Dangling?

One of my friends made a comment to me the other day.  She's also on Halaven (eribulen) but she's doing much better than I am....fewer side effects and MUCH better response with the tumor markers.  She said something to the effect that when she starts feeling neuropathy with a drug, she gets off it.

My viewpoint has always been that I will suffer through the neuropathy because it is better than being dead.  I suppose I came to this point as I got some neuropathy with Taxol.  I got more with Abraxane, even Xeloda gave me some, and Halaven is giving me a lot.....even to the point that I have numbness in my face.  Don't get me wrong, there's a lot of other reasons I may be experiencing this in my lower lip, and teeth....and I am checking with my dentist tomorrow.... It is a listed side effect....but I could also have a tooth infection, problems with my temporal mandibular joint (TMJ), heart issues, or a host of other things.

So....maybe she's right to jump ship and I'm silly for slogging on....,I sure as heck would like to find something that works.  My markers have been playing hopscotch.  Not fun.

So, what would  your choice be? Stick it out, or stop when you get the whimper of a debilitating side effect?  All I know is that it is getting progressively harder to walk.....  I sure do wish I could convince my oncologist to do a biopsy of the gluteal mets and have rational theraputics or Caris test it out...I am getting a little tired of being the lab rat and risking the side effects when there is something else out there which may give us the direction to go without needless side effects....but this is a new process and lots of the docs aren't looking at the new methods that these two employ, just at what used to be done.  I'm not saying it is without error, but surely it would be less expensive and possibly easier on me.

How Many,how much?

One of the things I struggle with in my current chem is not knowing when it is going to end.   Back in 1994, when I got CAF (cytoxin, adriamysin and 5-Fu) I knew I was to have 6 courses.  In 1998, with Taxol, I knew I was slated for 9 24-hour doses, one every three weeks.  But now?  "Until it no longer works or you die."

It is interesting....when people ask, and I tell them.....they startle.  They weren't expecting that.  To be honest, neither was I.  I used to play mind games with the chemos in 1994 and 1998..."One down, 5 to go..." until I had counted them out.  There are no mind games to help me through this one...Hopefully, (but terribly unlikely given how this has progressed and that it is in so many bones, my lungs and liver....and however improbably, my gluteal muscles) I will be able to knock this into a little period of remission...but....maybe not....and maybe I will be kept on a maintenance dose of some chemo ....Even for this warrior, such a protocol is hard to take.  So...I put one numb foot in front of the other and hope...That's all we can do.

There's a Cream for that!

When I was a kid and had to go to the pediatrician's to get a shot....my mom always promised me an ice cream afterwards to make me feel better (OK....it was really sherbet as I had to watch my milk intake as I had a sensitivity to dairy products).  I didn't like needles then unless they were pulling thread.

So, when I had a deep port which was often difficult to access, the nurses offered me a numbing cream for the skin.  I thought that was pretty silly as the skin was just a temporary prick and it didn't hurt much. What did hurt is when they dug around trying to find the port, poking through muscle tissue.  There's no cream for that unfortunately.

Since then, particularly after I got my current port which sits right under my skin and looks like an alien has taken up residence, I snorted when people asked me if I needed "the cream."

Today, however, I changed my mind about what I thought about it.  I was talking with another breast cancer patient who watched me get accessed.  She asked me why I didn't use THE CREAM.  I said I never really understood it.  She told me it made her life so much easier...and less painful.....and more relaxed to "get her pokes."

Hmmmm. I had known  that I could tolerate pain very well...but I never thought about it, especially in the case of needle pricks.  I said that I guess I really do have a pretty high tolerance, and said I delivered my baby without any kind of anesthesia. I thought my chemo partner for the day was going to pass out right there.

So..if you didn't know, and that pin prick hurts, just ask for the analgesic cream (it is sort of like Novocaine in a tube).  But also remind them to wait a little bit for the alcohol swabs to dry on the skin surface.  It does hurt when the needle carries in the alcohol and burns.

So...remember you can ask for THE CREAM.....and the kind of cream above isn't bad either.  I will still skip the former and occasionally have the later. Anyone want to share with their own spoon?

Karma and Punishment

About a month ago, I was sitting in my office trying to sort out insurance issues, deal with the denial of coverage for my husband and my daughter (for acne for pete's sake)  and dealing with some things which would be minor under most circumstances, but with the lack of income in my household....it has become major. I began to wonder what in heaven's name did I do  to deserve this?  I then was reading one of the posts from an older, devout Christian lady on one of the metastatic breast cancer boards I read and she said that she believed God was punishing her.

I am sure that this lady hasn't killed anyone,.  In fact, I am pretty sure that her transgressions are minor.....and my head snapped to.  If God is an entity who mets out punishment like this, then I want no part of him...and I certainly DO NOT believe in Karma, particularly the thought that the actions of an ancestor several generations ago can plague us now.  No.  This is just the human side of us wanted to explain the unexplainable....why we are suffering.

But it isn't just us....baby's suffer horrendous diseases....innocent children do as well.  Unfortunately, suffering side-swipes us...and it is up to us to make the best of it.   Sometimes I admit to myself of being a little jealous of those who are planning trips, and retirement.....and  I can't.  But, I will continue to forge ahead, and enjoy what I can.  I hope you will too.


I know this isn't a chameleon, but my photographs of anoles I took several years ago in Florida, are now corrupted and I borrowed this photograph of "Carlos" from Lauretta Brandow Kyser. 

Sherrie loves color!: Cancer survivor's mom needs votes

One of my on line Quilty friends is Sherrie Spangler.   She and I have very similar tastes in color. :)  today she posted about a mom of a 2 year old cancer survivor's mom who has an etsy site wehre she sells her hand-made knitted and crocheted items.  For every three hats sold, she donates one to a child currently fighting cancer.  Her etsy site is:  www.violetbrielle.etsy.com

She is participating in a website: Geen Mom Guide and they are having a contest.  Please check out Sherrie's blog spot and follow her links to give this woman extra publicity.

Sherrie loves color!: Cancer survivor's mom needs votes

Impossible?

I was pleased to find this today.  I guess it was originally posted here:  http://piccsy.com/2012/05/possible-s8lor5d66

I don't know where people find this stuff.....

Today was another treatment day and I was talking to a guy who has an aggressive form of lymphoma.  He is hopeful for a bone marrow transplant, but he must get the lymphoma stabilized before he goes for it.

He and I were of the same viewpoint:  We would continue, hoping and waiting for something to work so that we could manage this as a chronic disease.  "I don't fool myself," he said.  "Even if I do get a bone marrow transplant, life will be different.  I may have to do things in a different way....but if I can get a few more years or 10 or 20....I'll do what I can."

Things are different.  For the most part I feel good, even though I have lots of annoying side effects....and there's always that monkey on my shoulder....but if I keep on feeding it bananas, maybe I can keep it from whacking me in the head.

Sometimes Breaks are Good

A little more than a month ago, I was struggling with extreme neuropathy, lack of breath, and muscle weakness brought on by the Halaven treatments I was getting.  The neuropathy, as I have mentioned before, doesn't give me pain, but it makes me unbalanced in my walking and makes it hard to control my feet.  I was getting beaten down.

Soo.....I asked my oncologist if I could have a little break, thinking a couple of weeks off would make it so I could bear it.  He gave me a month off.

Asking for a break is a scary thing for a patient to do.  We are besieged by fears that the cancer will go completely out of control in the month we have off.  To me, and I am sure many other chemotherapy patients, we imagine that the cancer is sitting in our bodies rubbing its little receptors and growth proteins together just waiting until we are not vigilant, and the armor of chemo is let down.  Not being on chemo or not doing anything to our minds makes us as vulnerable as a new born baby.

I was assured by people from drug companies as well as my oncologist that this wasn't the case.  Even so, I was slightly worried.  The month off was wonderful....and well timed as the day after I saw my oncologist, I developed the gastro bug which was with me for three weeks. If I had been on chemo I think it would have really wiped me out.

Some of my side effects (most notably the shortness of breath, the slight nausea, loss of taste, watery/tearing eyes and a number of other lesser ones) got better or went away completely.  Although the neuropathy was with me, my feet were no longer "dropping."   Mentally, I recovered and by the time I was to re-start, I could face it much better.  I was ready and willing to go back into the battle.

Just as everyone told me, chemotherapy has residual effects, and even though I didn't get treatment for four weeks, my tumor markers continued to drop, not as dramatically as they do when I get treatments, but it was still in the right direction.  Mentally, as I said, I am much better, and I know that when it gets to the point when I am having too much trouble, I can ask for another little break.  That does wonders for my psyche.

So, dear comrades in arms, please do not hesitate to ask when you get to the point when you don't think you can take it any longer.  A vacation, especially from chemo, can do you a lot of good and put you in better fighting form when you go back to it.  Discuss it with your oncologist.   Go as far as you can, but keep in mind that you CAN do as I did....with your doctor's help.

On Chemo? Watch what you eat.

This is a cautionary tale.  In June, I wasn't thinking.  I have been on chemo for quite a while now, and like many people, I have a decreased white blood cell count.  For the most part, however, I avoid getting the bugs and illnesses that many people fall prey to when on chemo.  But I forgot one of the cardinal rules: be careful what you eat.

We went to a local restaurant and I ordered the seafood platter.  It came with stuff tilapia, crab cakes and five little pieces of pan seared ahi tuna. I shared the ahi with my friend Martha, and my husband....and ate one and a half tiny pieces myself. Not a biggie.  I had had it many times before as it is my husband and my favorite appetizer.  Only I wasn't thinking.

Pan seared ahi tuna is essentially raw fish.  While everyone else who ate it was fine.....I got diarrhea which lasted for three weeks.  It wasn't rampant....but it was a problem and I lost 10 pounds, got very hungry, and was weakened.  If you were healthy, this wasn't a problem....but I ate it just after my nadir and picked up some sort of bacteria.

It seems silly, or rather a no brainer, but people who are on chemo shouldn't be eating raw foods.  In addition, they shouldn't eat anything which is slightly questionable.  So....no cookie dough which has raw eggs.  No real Caesar dressing or any other salad dressings which contain raw eggs (commercially prepared Caesar should be fine....as they are usually made with pasteurized varieties, but it is worth a check).  One thing which you may not have thought of is eggs over easy or other methods of preparing eggs which leaves the yolks runny.  In addition, while you are on chemo it would be wise to date the containers which hold your leftovers and follow the guidelines for how long things may be kept refrigerated.  You can find details here:
http://www.foodsafety.gov/keep/charts/storagetimes.html#.Ue8zSY2TjSg
Make sure that foods are kept hot and refrigerated immediately after you're done eating.   Do not leave foods out, or eat foods which have been out for extended lengths of time.  If you have an impaired immune system, or low white blood cell (or neutrophil) count, maybe you should avoid buffets for a while.  Don't eat your meats rare...but make sure that they have been cooked well enough to kill bacteria.  Make sure that you and that those who are involved in food preparation wash your hands thoroughly and do not allow for cross contamination of foods through cutting boards, counters, or cooking utensils.

Hopefully this will help you avoid the gastric distress I experienced.  It was no fun.

Get Rid of Toxins

When you get cancer, it seems like negative people come out of the woodwork.  In addition, you notice when you are in contact with friends who...well...suck you dry.   When you're healthy, this is a drain, when you are in treatment or dealing with something significant, well....it is often too much.

Since many people pull back because you have cancer, give yourself the option of pulling back, pushing back (pointing out the thing which bothers you to the person who is expressing it nicely) and the evicting them (drawing away) if you must.

YOU are the important person.  YOU deserve to be happy, and you deserve to be able to go through diagnosis, treatment, etc. without any added baggage.....especially if it isn't yours in the first place.

I never heard of Robert Tew....I think I'm going to have to look more deeply into his work.

Neupogen and Neulasta (filgrastim and pegfilgrastim)

For people on chemo, keeping up the white blood cells, or more specifically neutrophils can sometimes be difficult.  Neutrophil granulocytes are part of the immune system and comprise the largest type of white blood cells we have.  If we have low white blood cells, specifically neutrophils, then we are at greater risk for infection.  Because these cells are rapidly dividing, they often fall victim to the same treatment as our cancer cells.  One of the reasons that chemo patients get a complete blood count (CBC) is to check on the white blood cells (as well as a host of other things).

If they find that your counts are low, one of the things which your oncologists may do is prescribe a dose of Neupogen (figrastim).  I have always been confused between Neupogen and another drug which does essentially the same thing, Neulasta (pegfilgrastim).   I finally asked what the difference was.  Neupogen is faster acting and is sort of a jump start, whereas Neulasta takes a big longer and does the same thing.  Both have side effects of aching bones and muscles (your legs and other long bones such as your humerus (upper arm) and your pelvis is where most of your marrow is...your marrow manufactures blood cells, so when you are given stimulators to make more blood cells of any type, then those bones can ache) which can be alleviated by taking a non-aspirin pain reliever such as acetaminophen (Tylenol).  Both can cause enlarged or even ruptured spleens (if you have pain in your upper left abdomen, let your doctor know) , and bruising.  Also, some people are allergic to it....and if  you show any sign of allergy, let your doctor know immediately.

Both drugs are given by injection approximately 24 hours after getting chemo.  The injection site can swell and bit and get a bit warm or sore (local injection site reaction), but this may be an indication of an allergic reaction, and it is worthwhile to let the doctor know.  I find it a bit annoying to go back 24 hours after, but it seems to be doing the trick....my counts today were  actually in the normal range!  I switched to Neulasta when it became apparent that the low counts were not a once in a while thing, but had become chronic.  It is important to note that they won't prevent all infections.....you are still at risk, but it does give you a fighting chance.

If you have sickle-cell disorder, then you need to make sure that your doctor knows.  Another thing to bear in mind, both Neulasta and Neupogen come in pre-loaded syringes.  Neulasta's syringe contains dry, natural latex, and if you have a latex sensitivity, you need to make sure that your oncologist (and the injection nurse) are aware of this.  I don't know if Neupogen's does or not, but it is worth asking.

One thing to be aware of, I got my PET scan on Tuesday morning, and I was supposed to get my Neulasta shot the same day, so I told the nurse I would come in after my PET. By mistake, someone had scheduled Neulasta the same day as chemo (a no-no)....the PET tech came in and said..."Um..when did you have your Neulasta?"  I told her I hadn't yet, I was going in to get it after I finished with her and had had lunch.  She was very relieved as if I had had it before getting the PET, the stimulation would have caused metabolic uptake and my legs/pelvis/arms would have shown increased activity and made the PET next to worthless....score one for the Goose!

Yes, there is a drug which stimulates red blood cell production, but this is VERY expensive and must only be used under certain conditions and diagnosis. According to my oncology nurse, the insurance criteria is very specific.


Hope this helps....it sure helped me understand what was what and why I was getting what I was.

Why the red and white dahlias?  Well....I didn't have anything which would really fit..so I thought they could represent red and white blood cells....

Peripheral Neuropathy

I really wish that drug companies would really take a good look at peripheral neuropathy and ways to avoid it.  Peripheral neuropathy is nerve damage, usually on the hands and feet and it causes numbness which may also be accompanied by pain which is often described as "burning" or "pins and needle" type pain.  Many different types of chemo have peripheral neuropathy as side effects,  particularly  the Taxanes (Taxol, (paclitaxel), taxotere (docetaxel).  Many other drugs also cause it, such as  Abraxane, Halaven (eribulin), platinum based drugs (Cisplatin for example),  Thalidomide and Bortezomib among others.  About.com Breast Cancer has a pretty good listing of drugs which may cause it.   You can find it here.

 People who have pain associated with it are often given drugs to help, many being drugs prescribed for neuropathy associated with diabetes.  Fr those of us who just have the numbness, well.....they are still trying to work out things to help us.   Usually, B vitamins (B-1, B-6, B-12, ) and vitamin E are suggested....but they never helped me.

I have had some neuropathy from Taxol (1998), Abraxane (2010-2011) and now Halaven.  It never completely went away, but at least after 6 months of  being off Abraxane, I could feel below my knees.

Granted....mine is severe, compliments of having had so much chemo.  I cannot feel my hands and feet at all, which makes for interesting typing.  It may seem like something silly, but it affects my balance. I can't get feedback from the ground to tell me if I am losing my balance,until I've already toppled.  Buttoning and unbuttoning things, opening containers, and other "simple" tasks become almost insurmountable.     couple of years ago, I sprained my ankle as I thought I had picked my foot up high enough off the ground to step over some plastic....only to get my foot tangled in it and causing a fall.  I was fortunate I didn't do anything worse.

Presently, I have been taking a month long break as it has made it so difficult to do so many things.  However, it isn't long enough to see any real positive results.   I have also been experiencing muscle weakness, or peripheral motor neuropathy in my legs----I put my weight on one of my legs only to  have it collapse underneath me, and I cannot get up by myself unless there is something nearby to help me pull myself up.  It has also made quilting very difficult.

 I told my oncologist that the neuropathy was causing me to walk like Frankenstein as I couldn't feel my feet, and they don't respond well, so I sort of have a "dropped foot."  This change in gait may have been the cause for a tightening of  tendon in the back of my calf, or it may have been just another side effect of Halaven as it has gone away with the  break, even if the neuropathy is still substantial.

If you experience peripheral neuropathy, you need to keep some things in mind:

• Be aware that you may not be  able to feel hot or cold surfaces and you may burn yourself---(particularly on my hot deck which gets no shade!)
• Always wear shoes and socks to protect your feet as you may injure them without really feeling it.  
• Check your feet before you go to bed to make sure you don't have any cuts, fissures or problems on your hands and feet. 
• Wear gloves when doing housework and gardening.  You must take every precaution to protect your hands. 
• You may have cramping and slowed or loss of reflexes (my games of Bejeweled are way off!).
• Use handrails even if you don't think you need to.  Better safe than sorry.  
• If you have weakness in your legs like me, or balance issues, by all means get a cane.  Hopefully, it will only be temporary, but it is a heck of a lot better than sporting the bruise I currently have on my knee.
• Another thing, limit alcohol as it may make things worse. 

Another wonderful side effect?  It can cause constipation, as well as loss of muscle mass and strength.

Yeah.  Cancer isn't for sissies.

Sorry....no photo...the only thing I could think of using was a shot of my now yellow bruise on my knees

What Emotional Support Should a Doctor offer? What should they say?

Not long ago, I took a survey on Advanced or Metastatic breast cancer (MBC).  One of the questions was whether or not our doctors had supported us emotionally after diagnosis.  I struggled with this question.   In talking to a breast cancer surgeon who worked with several breast health groups who said that she didn't think that women were given the information they needed, and in essence that things were minimized.

More thought on my part. This is  a really difficult question.   For one thing, what does emotional support mean in this context?  Does it mean a hug? Does it mean sharing a good cry together, or does it just mean acknowledging the patient's fear, anger, pain, confusion and all the myriad of other emotions that the newly diagnosed advanced or  MBC patient feels?  Or what about the patient who has struggled through treatment and failed?

I feel that being an oncologist is emotionally difficult and that they have to observe distance from their patients in order not to burn out...too many patients just don't make it.  This is not to say that they shouldn't be sympathetic or understand where their patient is coming from. I do understand, that they do form connections with some of their patients, they are, after all, human as well.   In addition, there are some doctors who are clinically very good....but need a lot of help in the "bedside manner" department.  Whenever a doctor makes a pronouncement as to how many months, years, etc. a patient has, I want to check to see if he has a belly button, or if he really IS God.

Also, each patient approaches cancer diagnosis in different ways..  Too much information terrifies some, others, like me want to know the details. This can present problems if the doctor doesn't understand his patient, or the wrong types are partnered. Take, for instance, me and my husband's cousin.   We see the same oncologist.   The Divine Ms. M doesn't want to know the details, whereas I want the whole skinny.  I take the viewpoint that the oncologist and I are partners, not me being a guinea pig.  When I don't get the whole picture, or what I perceive is the whole picture, I let him know that I don't feel like I am fully informed and I don't appreciate it.  Doctors can't read our minds and they have to learn about us.  Sometimes that works, other times I suggest that patients look for an oncologist who more closely aligns with their needs and expectations.  Cancer is hard enough to deal with without  dealing with a medical deity.

One thing which I do think is extremely lacking is access  to a social worker.  In the past, many of us, me included, got treatment in a facility associated with a large hospital.  Social workers were on staff to help us with our emotional needs.  Now, many go to smaller, independent cancer centers who don't have social workers (or financial people, but that's another issue) to help us through the morass.  I think this IS a problem.

Don't get me wrong......we need doctors who understand that we are going through a difficult time and we don't need to be hit by sledge hammers time after time....and that we are individuals who need to have all the information given to us in a compassionate, yet truthful way....but I  am not sure that our doctors need to be the main providers of emotional support....although they can be supportive in the way we are told and recognizing where we are and working from there.



  

NOVARTIS Survey finds that Advanced/Metastatic Breast Cancer Patients Feel Alone

I have to hand it to NOVARTIS....the pharmaceutical company which makes, among other things, Afinator.  They've been working at really talking to Advanced/Metastatic breast cancer patients and are actually trying to help.  I know that since it is a pharmaceutical company it is sort of self serving.....but they don't have to do this.  As part of their new initiative, they have started a new website to support advanced/MBC patients and are producing documents and support materials, as well as working to provide opportunities for us to meet and to reach out to others through their "Count us, Know Us, Join Us" campaign.  You can read more about this on their new website,
http://www.advancedbreastcancercommunity.org/

I took their survey which was put out through the Inspire.com website.  I think the survey could have been improved....but I have to give them credit as they are the first to have every ASKED the questions they did..at least in my experience.

Not surprising to those of us in the trenches, they discovered that we do not feel acknowledged or understood by other cancer patients, particularly the newly diagnosed stage 0 - 2.  Take a look at the synopsis the Metastatic Breast Cancer Network made of the report here:

http://mbcnbuzz.wordpress.com/2013/05/22/survey-says-metastatic-breast-cancer-can-be-a-lonely-experience/

It's hard being someone who is on long term chemo.  I have been on treatment for the last three years.....and people drop off the face of the earth....partly because I can't get out, and partly, I think, because they are tired of me. When I am asked how long I m going to be on chemo and I respond, "I don't know,"  they are incredulous.  They don't see me the days that I am bed bound because I am too fatigued to function. They figure that I can handle it....or that my family should be able to handle it...and yet I have issues that I am struggling to attend to....Yes, I can no longer garden like I did...but I want some help in destroying beds..but that's too hard.

Novartis is to be commended for this.  Hopefully, it will make a difference.  Their standard response is "You are not alone on this journey."  I have to say, that it is a much more positive response than when I was first diagnosed.

Take a look here for more interesting information on the different responses from different countries.

http://www.advancedbreastcancercommunity.org/countus/2013-global-survey.html

The www.advancedbreastscancercommunity.org website is as full of information as the website name is long.

I'm looking forward to seeing what other companies will do, and what else Novartis will undertake.

In the meantime....I'm going to bed...again.

Side Effects of Halaven (Eribulin)

I took this shot in Racine, Wisconsin last week.....I was just taking pictures of the architecture and laughed when I saw that I had captured my reflection in the window.  It was a wet, grey day.

I have completed my third cycle on Halaven (eribulin) and started my fourth...I have found that every other treatment just hammers me.  Because it drops my red blood cell count so low, I am often out of breath and I spend the third through 5 day sleeping  A lot.  Like 15 hours...and even then I'm not able to do much when I'm up.

The first treatment I received, I got a shot of  filgrastin (Neupogen) to elevate my white blood cell count.  My red was depressed as well..but they let it go.  After one dose of that, my counts were good.  The second series, I had to skip the second injection (which is put into an IV line) because my counts were low.  Still, I have been dropping tumor markers at a good rate.  I won't be allowed a PET scan until Sept. to see if it is really working...if then...per my insurance....although by then I will have run out of insurance.

Other side effects have been do-able.  I have lost my hair, although I'm told by  a lot of people that it often comes back before you finish, and that is only supposed to happen in 48 percent of the people on it.  I have increased neuropathy (in my case just numbness) in my hands and feet....always a problem.  I have increased lacrimation....in other words my eyes tear up and drip...which also causes a drippy nose.

I have nausea (which goes away pretty much after my week off and comes back again just before I get my second dose in a cycle), heart burn (which is handled by omeprozole--aka Prilosec), periodic hiccups, and burping (oh joy).  I also have severe cramping of some muscles, particularly my hands and jaw, which we are trying to figure out.

I also have lost my sense of taste, yet again, that starts coming back after my week off....only to lose it again.  The lack of taste and nausea has meant that I have been losing weight, which isn't a bad thing. It isn't a problem yet....until I put on the new pair of smaller pants I bought and discovered I can no longer wear them without a belt...That's OK.

I'd like to be able to do some more exercise...I am going to have to concentrate on going back to qi gong, which for lack of a better explanation is a form of Tai Chi...very slow, controlled movements which seem to do a lot of good for me....only I'm embarrassed to do them when Carlos is around.....so he really really does need to find a job and soon!

All in all....except for the severe sleepiness, I am able to do quite well on this.  I doubt I could get a regular job as I don't think I could handle it...with all the fatigue and weekly doctor's visits, but I have to say other than anoyances, I'm doing OK on this drug.

More on Caregiver Support

This last weekend, I was in Wisconsin, giving a talk about coping with advanced or metastatic breast cancer.  I spoke a bit about the need to take care of our caregivers.....they have needs, and are being drained emotionally and spiritually as well as possibly physically (depending on the situation).  After the presentation, one of the ladies in the audience asked if there were any support groups for caregivers locally.

The city I was speaking in had a population of 80,000 and presumably would pull from the outside area as well.  However, the host facilitator said that no, they didn't, although caregivers were encouraged to attend the support groups with their patient.....

That just isn't a good idea.  They need their own.  I suppose that it is a good stop gap measure....but to my mind, the patient AND the caregiver need to have an outlet where they can talk separately about the issues they have....Just as when I get together with my quilting friends we sometimes grump about the silly things our spouses have done....which is a way of getting it out of our systems without taking it out on the spouse.

Caregivers and patients do not necessarily have the same issues.  Caregivers may be  afraid that they are losing their patient.  They may be  afraid that they aren't doing a good enough job, and they also have a lot to learn in a short amount of time.  They need to take care of the needs of their patient as well as other standing obligations, whether it is job, family, household, as well as tending to their own health and person.  Sometimes they are taking on several new roles.

I wish that cancer centers and cancer support groups would take a stronger look at this.  It doesn't even have to be a group specific to a single type of cancer....but I think that it is needed....

(The above photo is an image of my Great Grandfather, John Robert Ross with his first family.  His wife, Isabella McBain (or McBane) died, leaving him with several children to take care of...he ultimately remarried, to his also widowed housekeeper who had three children of her own...going on to have a blended family).  I am a descendant of the second Ross family.)

The MoonWalk fundraiser NYC July 2013

Walk the Walk is bringing an Overnight Marathon, the Moonwalk to New York City. Kind of a nutty and fun idea.  Power Walkers (men and women) will be walking a marathon (26.2 miles) wearing decorated bras to "inspire and encourage others to get fit, have fun and raise money for breast cancer charities in New York."


Empire BlueCross BlueShield is the sponsor of the event which is expected to have about 8,000 participants.  In addition to the full marathon, there will be a half marathon to encourage participants who can't do the whole thing.

"the MoonWalk hopes to raise two million dollars in one night, most of which will be granted to Memorial Sloan-Kettering Cancer Center, to help support their Breast Examination Center in Harlem (BECH), one of the first free screening facilities for breast cancer in the country where 80% of the patients are uninsured by guaranteed support and guidance."

"We are all so thrilled to br bringing the MoonWalk to New York City.  This is the city where it al began!  In 1996, 13 of us proudly Power Walked the New York City Marathon in our Bras, and it is just quite amazing to see how far it has come and how much we have achieved,' says Nina Barough, Founder and chief Executive of Walk the Walk.

Applications and entries are available at www.walkthewalkAmerica.com . Participants are encouraged to raise at least $150.00.  you can also get additional information at www.facebook.com/walkthewalkworldwide or follow on twitter at @WalktheWalk

When you register, they send you a nifty training kit.  It has a fitbit zip activity monitor (aka pedometer), an insulated water bottle belt holster  and a VERY nice fanny pack...with lots of zippers and stuff. I got the package as they asked me to promote it....I kept on saying  that I couldn't walk two blocks because of my feet (maybe I could do it as a zombie?????) but that it sounded like a lot of fun and I would put it out there for anyone in the vicinity or who is able.

In Europe, this event has raised a lot of funds with events in London,England;  Edinburgh, Scotland; Iceland; SunWalk, London.  In total, Walk the Walk Worldwide has raised over $126 million for breast cancer causes.

They say that they have funded research.....how much for advanced stage or MBC I don't know....but it still seems fun and worthwhile.

ACS Wig Bank

 As a result of being confused with a fortune teller a couple of weeks ago and the suggestion of one of the people who commented on my blog (Thanks Karen!), I decided to bite the bullet and check out the American Cancer Society's wig bank.  This was a little imperative because last week I gave a talk to other advanced/metastatic breast cancer patients who had been recently diagnosed.  In addition, I was working at the International Quilt Festival in Cincinnati.

I called the American Cancer Society's 800 number, and I was referred to "Styles Unlimited" in Sidney, Ohio, which is about a half an hour from me.   I was surprised at the number of wigs they had on hand...some were donated, either after use or when they didn't work out for the person who ordered them and some are donated directly to ACS by the manufacturer.  Darla and Patty and I...and a couple of their customers who came in after we started the process had a fun time trying them on and trying to pick what would look the best.

I was a little surprised because hair which was my natural color looked a little too dark...Instead, we settled on this one which has some "frosted" areas in front, but also had reddish brown over all...sort of similar to my natural color but looking a tad lighter.

It hasn't fallen off.....it fits pretty well, although you do have to wiggle it around to find the sweet spot so it won't give me a head ache.  I still can't find my wigs from before (from three years ago and the original one which was purchased in 1994).....So I was very pleased to have been helped out with this one.  This was a godsend given the status of employment in this household of late.

You can check out resources offered to Cancer patients on their website here.  It is in the "find support and resources in your area."

Caregivers

Not too long ago, I read a post someone had written taking umbrage with the viewpoint that sometimes the caregiver of an advanced stage or metastatic cancer patient has a difficult time.  I agree that it is the patient who is staring death in the face and has to deal with the personal changes and personal hell of getting treatment.

But, I also think it is difficult for those who love us and are watching us go through this, and wanting to help...but not knowing quite what to do.  Partly, I think it is because there isn't much of a support system for the caregiver.  The attention is focused on the patient...and rightly so, but that doesn't make it easier for the caregiver.

Don't get me wrong...some spouses, significant others, etc. can be....well....real douche bags and idiots.  They take their fear out in the form of anger at the patient....or meet it all with denial, expecting the partner to continue to do everything as they have before diagnosis and treatment.

My own experience has been a husband who tries to be supportive but is scared spit-less ...who sometimes cries because he knows that in all likelihood  I'm not going to pull out of this one and time is limited.  Not to mention the other stuff he has to deal with...no job...how are we going to pay for this....a kid in college....blah blah blah.  I have taken the viewpoint that there's a heck of a lot I can't do anything about...so while I am concerned about those things....I'm not going to spend any time worrying about it.  Maybe it is silly...but why bother? I can't hire him.  I can't do anything about any of that....but I can try to straighten out my own messes, sell stuff on ebay, etc.

Sometimes I overhear things in the waiting room in the cancer center.  Some of it is really touching.  A couple of weeks ago, a woman who had gotten some treatment at the same time I had the week before was there with her husband to get her blood work done.  While they were sitting there, the husband was trying to figure out where he was going to take his wife....he was talking to her about Lourdes, or to Fatima, Portugal to get help for her....She was largely ignoring him.  It was obvious to me that he felt helpless and didn't know what to do, so he seized on what he could.....asking for help from God at the two shrines.  She was rather irritated with him...and was speaking rather sharply to him.

I felt sad for both of them.  We are in uncertain areas....it is hard to know what to do...and whatever we can try seems to be worth it.  I often get notes from friends or acquaintances with a new miracle juice, diet, or cure.  I try to look at all of this as what it is...people who want to help...people who love me and want to see me well.  And that's a good thing....

Down the Badger Hole

Ok...so I don't have any images of a rabbit hole.  Yesterday, I experienced a first....my blood counts were too low to get my second dose of Halaven in the second cycle.  I was stunned.  This had never happened before.

All sorts of odd feelings came rushing in....Will the cancer grow since I won't get any chemo until my oncologist sees me on April 17 and figures out a reduced dosage?  What does this mean for my overall survival?  Will a reduced dosage work? After all, the reduced dosage of Xeloda was only marginally better for my body and wasn't enough to control the cancer.

On top of it all, I obtained a copy of my last PET scan.....and the results were more dire than my oncologist had led me to believe.  All of this is downright scary.  However, I am trying to take a deep breath.  Since my first blood test indicated that the Halaven was working better than the oncologist anticipated, perhaps a reduced dosage will do as well.  Perhaps the fact that I got one cycle and one dose in will mean that I will have a residual effect while I am waiting to get the reduced dosage.

Other questions are in my head....can someone with extensive bone mets like I have manage to get to a level of stability or even better yet No Evidence of Disease again? Or am I fooling myself.  And in the mean time, what can I do to improve my health so that I am doing everything I can to make it work?  Hopefully, I will be able to start walking again...although I am very slow and the neuropathy (from previous drugs as well as Halaven) make my walking pretty dicey...it's like I have dropped feet.

I do know that I cannot be mired in the "what ifs."  However, I do recognize that I am having a period where it seems daunting indeed....That's one of the tough things about this disease.  It is in some ways unpredictable....but it does have one predictable thing....it can't be cured.  I will once again work to wrap my head around this....and not let the Cancer steal away my good days.....

Halaven and Hair...or Halavan and hair....or no hair at all

Wow.  What a surprise.  I suppose I shouldn't have been surprised.....but just 15 days after my first Halaven (some places it is spelled Halavan....eribulin) I hopped into the shower....put shampoo on my hand and started massaging my scalp....only to have a hand full of hair.  I was sort of shocked.

Wait a minute, you're probably thinking, she's shocked?  Well, yes.  For one thing, only 42% of patients using this drug lose their hair...and I had hoped that I was one of the 58% to keep it.  The other thing is that in the past on the other drugs which caused me to lose my hair (CAF, Taxol, Abraxane) it took longer.  

Don't get me wrong....I really don't mind being a hairless wonder...being bald has a lot of advantages....and I'm getting used to it by now.  But the process is always messy.  When we say that we have "handfulls" of hair, it isn't in hanks....it is in individual strands that have let go.  This is what I had after running my hand through my hair two days after the shower experience.  It's messy.  It's annoying....and I don't like hair as a condiment... I said something to my husband about it being time to shave my head.   "Can't you wait a couple of days?" Sigh....he has a hard time with it..so I waited ....until I got a hair wrapped around the head of my electric toothbrush.  That was the end.....

So..out popped the electric hairclippers and I buzzed away....Little stubs have been left, and I don't have anyone that I could ask to really do a close job (one of my daughter's high school friends who shaves his head did it for me the last time)....so I left it.  No big deal...except I am discovering something interesting. It appears that it all might not fall out.....I have hair stubble on the sides...but not a lot on top.  I wonder if I could pull off a comb-over???? NOT!

So the problem I have at present is that my wigs (cranial prosthesis per my prescription) are among the missing.  I can't figure out what I did with them...both the butchered one from 1994 which is really comfortable but unwearable in public since I took it to a hairdresser who charged me $60 to make something which has ragged ends and is basically a mess, and the one I bought at a local shop which was not personally fitted to me but looks presentable...and doesn't feel right after wearing it for a while.

I've looked and looked and I have no idea what I have done with them.  So I have been wearing scarves...It is odd because I get little crinks in my neck while tying them.....and on Easter my family (not my immediate family) asked me if I would tell their fortunes....

I'm tempted to take a trip to Connecticut and have the guy who fitted me in 1994 do it again.....I can't seem to find a place like that one here.  I must admit, it was sort of fun....I have a beef with a local salon here....as I was mischarged and they won't own up to it...but lied to my husband.   So...when I got notice that an appointment I had made 8 weeks ago (and had cancelled but they failed to do that) was coming up, I called once again to cancel....and they said "let me reschedule this for you."  It gave me great pleasure to say "No, that won't be necessary....I don't have any hair. "

When to go to the Doctor...NOW!

Sometimes side effects from chemotherapy and the doctors responses to them drives me nuts.  OK....MOST of the time they drive me nuts.  Sometimes the way seems to be tangled and you are left feeling like you should be relegated to the scrap heap.

I recommend that you keep a list of what your side effects are and make sure you share them with your oncologist.  Check out the side effects listed on the drug manufacturer's website, or in the hand out that you should have received when you got your first dose.  Usually, the drug manufacturers have you call your doctor right away for almost any of the side effects.  I have experienced the yawns and snorts from the triage nurses when you call them about your side effects.  It can be quite annoying.

Many of the side effects are not life threatening, but if they really impact your quality of life you do need to make sure that your oncologist knows about them right away.  Sometimes there are things which can be done to help you, and there is no need to suffer in silence.  Take the risk and just take their snorts and yawns --sometimes what you tell them may actually be important.

Many chemos have side effects such as losing your hair (annoying but not life threatening). However, many of the drugs DO have interactions which are very dangerous.  Ask your oncologist for a list of what side effects he wants you to call him about right away.  They probably include the following, but I am sure there are others I am going to forget:

tongue/throat/lips swelling: this might be an allergic reaction which could be very serious.

heart palpitations, racing or slowing heart beat, dizziness, shortness of breath.

A rash which is on your torso and upper part of your arms and legs (again, this might be sign of an allergic reaction).

Fainting.

Bleeding,

Fever.

The above are ones which you should probably not pass go, but go directly to the emergency room.

Others are dehydration from vomiting or diarrhea, prolonged bouts of either---usually the drug information will guide you on what they feel is important.

So...the best thing? Find out what the side effects are before, or as soon as you are taking the drugs.  TALK to your doctor and have him clearly indicate when he wants you to make an emergency room trip, or to check in with him, or what he feels is a serious problem.  Forewarned is forearmed.   I am sure you would be happier knowing what is serious and what isn't.  And better than listening to my chemo-infected blathering....it is best to get the information from the horses mouth....

Bits and Pieces: Taking Care of the Rest of Our Bodies

"Heart Throb" dimensional appliqued fiber art, in progress, Lisa Broberg Quintana

Tonight NBC had another post about how in some cases radiation for breast cancer patients had an impact on heart disease.  She went on to say that cancer patients should continue to go to their general practitioners and get things checked out.

I snorted.   Loudly.

I have been in a quandry about this for quite some time.  Sometimes it seems like we are viewed as bits and pieces and no one really looks at us entirely.  I don't know if they feel that cancer is the biggie we're fighting right now so looking at anything else is piddly, or if it just doesn't matter because cancer is going to kill us anyway.

When I started Abraxane, and started to have some side effects, I thought about driving down the 30 minutes to go to my oncologist to get some help.  But my general practitioner was only 15 minutes away and surely he could handle a case of thrush....or my weeping hands.....or the rash. Most of the time, they just looked at me, called their co-workers in who looked at me, they shook their heads and I went off.  Sometimes when I talk to my oncologist about problems I'm having which may or may not be cancer related and he shrugs and says, well....it might be bursitis..or whatever....and that's the end of that.

I have always been cautious of my heart.....afterall, my great-grandmother died of a heart attack at 51; my grandfather died of a massive heart attack at 68; my dad had his first heart attack at 50, his second at 72, and his third at 82.  A couple of weeks ago, some of my friends asked me if I went to my regular doctor....they were concerned because several weeks earlier they thought my color was bad.  I have pain in my sternum which is not cancer related and had severe fatigue...even though my blood counts were good and I hadn't been on chemo for three weeks.  I still don't know what is going on.  When ever I mention it...people nod....and go on.  Is it that the Lyme Disease I contracted in 2010 is still active, even though I did a course of oral antibiotics? Is it something else?  Who cares? Seemingly not my doctors.

It would be really great if the oncologist and the general practitioner would actually communicate.  I would seem to me that we could actually get somewhere from this...in the meantime, I feel like it just doesn't matter. I don't get satisfaction for the issues of the rest of my body....because I am just a bunch of bits and pieces.  And that is just plain wrong.

Faslodex: Additional Thoughts

The other day I looked over the statistics for my blog, and discovered that one of the most viewed was my post on Faslodex (fulvestrant).  I realized that I didn't include some information which I found out later and would be really helpful.

Faslodex is used for ER (estrogen receptor) positive breast cancers, and is an estrogen blocker.  AstraZeneca has a really good, simplified article on how it works here.

Usually, if you go on Faslodex, they observe you for at least three months to see if it is effective.  For me, side effects were a hot, bruised area at the injections site (more on that later) and fatigue for the first shot.  Some people experience muscle/joint pain. AstraZeneca lists the following as common side effects:  injection site pain, nausea, muscle, joint, and bone pain, headache, tiredness, hot flashes, vomiting, loss of appetite, weakness, cough, constipation, shortness of breath, and increased liver enzymes  It is not recommended for people who have liver problems, or who are on anticoagulants.  In addition, you should not take it if you are pregnant.

I have to say, for me, I only had the extreme fatigue the first time I had it.  The injection site bruising and pain was the greatest the first time I had it....and I think it had a lot to do with where I had it and who gave the injection (Nurse Rachett's sister).  After my first experience and being told that being tired was "all in my head."  I went to another place to get my chemo (same doctor, different office).  There, it was a world of difference.....

Faslodex should be administered at room temperature and SLOWLY as it is very thick (neither was done the first time).  In addition, you should not be bearing weight on the side you are getting injected as a slack muscle is better to accept it.  Some people get their shots laying down on their sides.  I just acted like one of these horses and canted on foot up while bearing all the weight on the opposite leg from which I was getting an injection.  Slowly injecting it also made a world of difference.  Simple things which made for a much smaller bruise and no big colorful lumps.

For some people, this works quite well. Unfortunately, for me it didn't.  Hopefully, this will give you a heads up and help so that you won't get huge, bruised lumps on your derriere.

Snake Oil

Ok...so I was looking for the photo I have of a snake that Lemmie caught and brought to me...so instead of a snake in the grass, we'll have to do with a Lemmie in a tree.

I am often annoyed by various posts and information I find on the web claiming that this or that is a cure for cancer....as a person who has stage IV cancer, I find it cruel that many people out there are snake oil salesmen, making unfounded promises and taking money from people who are willing to do anything to try to stay alive.

Perhaps some of these things which are suggested do have benefit.  However, I find that on some of the web sites I belong to which have posts by people...well....I am suspect.  For instance on the Inspire website the other day, someone posted about a miracle juice....which was curing her of breast cancer.....although when you go to her profile page....she is interested in people who have a gamut of illnesses, from Psoriasis, to various forms of cancers and other unrelated things.....but in the area where she is supposed to tell about herself and her treatments....it is empty.  Somehow I think that this person is not legitimate, but is trying to encourage sales of a particular material.

I encourage people to do further research...and look for information which has been vetted....and checked out.  Sometimes you see the same information posted over and over again, all from the same source.

Sometimes the anecdotal information is re-posted from poor research, unscientific research which has been pretty much dismantled by the medical field.  and some of it flies in the face of biology.  My favorite is that using deodorant causes breast cancer....well, the person who did the original "study" asked a group of people in the U.S.  who had breast cancer if they used deodorant.  Guess what....almost all of them did..ergo, reasoned the researcher, deodorant caused breast cancer.  But just thing...using deodorant is almost universal in the U.S.  So it goes to figure that people who had breast cancer also used deodorant.

One thing I see over and over now is "changing your body's pH by eating an alkaline diet.  Your body is an amazing machine.  Your stomach digests things using....acids and other things.  It is counter productive to try to change your body's pH....it just isn't going to happen.....and neutralizing your stomach acids isn't such a hot idea either.

I could go on and on.  Be aware.  Look into things more deeply.  Ask questions.  Look to see who is writing and WHY they are writing.  If you see holes....run.

Finding an Oncologist, an Homage to Samuel Bobrow

I've been thinking a lot about oncologists lately...and especially one I was privelidged to call mine in Connecticut.  When you choose an oncologist, you need to have one who you can work with.  You are going to be with them during some very difficult times and it is best that you find one who isn't all gloom and doom or who somehow has x-ray vision to see your expiration date somewhere inside your body....I assure you....it isn't there.

When I was first diagnosed, the surgeon recommended a different oncologist. One who was about my age (in my early 30s) and who worked in the same town I lived in.  I went to my appointment which I thought was just a consult to lay out what was going to happen.  I walked in the door and the first thing they did was drew my blood.  Why? I was new to this.  When my husband I and I were finally able to see her, she was brusk.  I mentioned to her that I would like to have children after treatment...she just about went ballistic.  I actually felt worse after seeing her than I did when they told me that the lump was cancer.

The next day, I had my Bosom Buddies support group meeting and I told them what had happened.  They encouraged me to find a new oncologist.  But how to do it without insulting my surgeon who had suggested her?  They suggested that I tell the surgeon that our personalities just didn't match and that I needed to find someone I was comfortable with.  Which I did....and my surgeon recommended Dr. Samuel Bobrow who at the time was working at the Father McGivney Cancer Center at the Hospital of St. Raphaels in New Haven.  True, I would have to travel 30 minutes, but it was worth every minute.

Sam is a guy who works with you.  You are part of a team.  He listens and if you think there's a problem, he looked into it.  While you sometimes had to wait a long time (one time almost two hours after my appointment time....he burst in and say "WHY did you wait for me? I would have gone home! This is ridiculous."   I laughed at him and told him that he often spent more than the allotted 15 minutes with a patient because they needed it...and I wanted to know that if I needed it, he would do the same for me), because he did listen.

His staff was great, empathetic and willing to do what they could to make your visit better or to solve the problem you had.  Linda who worked as the receptionist and kept things rolling could be an absolute bulldog for her patients.

Sam was a good doctor the first go around in 1994.  When I was diagnosed as stage IV in 1998, his wife was also getting treatment and we got treatment together a couple of times until she felt it was too much to be in the treatment room with the rest of us.  After living with cancer, Sam became an even better doc....he knew what we were going through.

Unfortunately, his wife passed away.  After several years, he re-married.  He had grandchildren who were a little younger than my daughter...and he delighted in them.

I wasn't happy when I had to leave him to move to Ohio....In fact, several times I have considered going back to him for a second opinion, especially during the last three years with this rather nasty flare-up I have been fighting.

Last week, I was calling to find out where my preserved tissue sample was....since Ohio State University had lost all my mammograms and not returned them to the originating institution, I was afraid they had done the same with my specimen.  When I called, I found out that one of my nurses was still there, but that Sam was retiring...he left in December but he was having his party either this week or next.   So..I've lost my chance.  It doesn't surprise me....he has a new wife and all those grandkids to play with....and I'm sure he wants to get a chance to perfect his golf game.

So here's to Sam Bobrow.  I hope that all of you are able to find a doc like him....and to have the courage to switch when things don't fit.  Remember, you might not find different information, protocols or drugs, but I hope you will find someone who delivers the information and listens to you as well as Sam did....

Have fun, Sam!  You deserve the best!

Oh yeah....and I stole the thumbshot of Sam from the Yale-New Haven website (Yale merged with St. Raphaels)

Cancer Support Groups

It is often difficult for the advanced or metastatic cancer patient to find a local support group.  Many support groups cater to those who were recently diagnosed with an early stage cancer.  They do not understand the reality for advanced cancer patients...and many don't want to.  We are emblems of fear to them.  When I lived in Connecticut, I was lucky to be a part of The Busom Buddies which was sponsored by the Meriden-Wallingford (Connecticut)  branch of the American Cancer Society.  Although I was the only stage IV person there, this group was a bunch of sage, funny and helpful women who supported me and helped me along the way even though I was in my 30s and most of them were in their 60s or older.

I had hoped to find a similar group here....but it seems that in person support groups are harder to find...a pity I think as although you may know people who have had breast cancer, the collective experience of 10  - 20 women is far better and in the case of the Busom Buddies, we had a social worker assigned to us to facilitate and she was just great at making sure we stayed within our boundaries or had the clinical material to point us in the right direction if we had specific concerns or problems.  She was also associated with the local hospital which was a great help.

Here, in the Greater Dayton area, I joined the Noble Circle .....but lately I have been feeling alienated from that.  This was their brochure for their fundraiser the "A Wear Affair"  which was held this last weekend.  I didn't go.  Primarily, the name for this function turned me off.  I am not thriving.  I'm in the trenches and giving it all I have.  Their byline which is above no longer seems to fit.  Thriving? Hardly.  In my group of 15 women, five died within the first year.  Another member who is in the same boat as I am has said she's not going to be involved much as she has "Noble Circle Regret" because we have lost so many....and also, it often seems that even though there are members who are fighting advanced cancer with this group, we are in a minority.

Still....it is important to have some contact with others who are going through this....and there are several very good on-line communities for people who have advanced stage cancer.  I hope to be able to give you a whole list of links soon..but I will give you a couple and hope you can join in and add more.  I prefer to go to site which are monitored as there can be some really way out people and there are those who are "snake oil" salesmen who are advocating "cures" which in reality are just a profit maker for them...or those who can get very negative.

Here are some of the ones which I think are pretty darned good:

http://www.metavivor.org/Support.html

This webpage talks about the various support groups sponsored by Metavivor, as well as how to start your own and what to look for in a group.

http://www.advancedbc.org/

http://www.cancersupportcommunity.org/MainMenu/Cancer-Support/Online-Support-Groups.html

http://community.youngsurvival.org/

http://www.cancercare.org/patients_and_survivors

http://www.inspire.com/

http://cancerhopenetwork.org/index.php?page=findamatch&gclid=CLTFl4rV1LUCFUVnOgod0k8AxA


http://www.healthcentral.com/breast-cancer/?ic=1102

(Health Central's "support group" functions through their share posts.  PJ Hamel and Phyllis Johnson are the two people I have had the most contact with....and I thoroughly enjoy them.)

Even so....you will find that from time to time you will need to step back, or avoid some posts.  We have cancer.  Some of us won't make it....and that makes it hard.  You really do mourn these people when they die.  However, I always feel grateful that I got to "meet" them.

If you know me...you'll know that I am quite fond of A. A. Milne's Winnie the Pooh.  Even though it is approaching 100 years since Winnie the Pooh, bear of very little brain and more stuffing that he ought came upon the scene, Milne had wonderful insight and the book is filled with nuggets....

“How lucky I am to have something that makes saying goodbye so hard.” 
― A.A. Milne, Winnie-the-Pooh

Side Effects and Drug Information

When faced with "choosing" new drugs, sometimes the fear of side effects can be overwhelming.  In addition, once you've started a new drug, sometimes it is difficult to determine what is a side effect of the drug and what is caused by something else.

I am preparing to figure out what new chemotherapy to start...and I must admit, I hate the fact that I have to do this.  It seems sort of wrong that the common thing today is to have the oncologist give you a selection of the drugs and.....you pick your own poison.  I don't mean to be negative, but it is strange.  I understand that it IS a good thing for the patient to have input as well as to feel like they are a partner in the treatment.  However, it is scary that we, who have no idea what it is going to be like, or how to interpret the cancers we have in order to choose the best thing, have to pick one.  Sometimes I feel rather much like Alice in Wonderland when she is presented with the vials and is told to pick one.

I would like it if somehow we were able to test the drugs against our particular cancers and choose from there....and in fact, in other countries (as well as here) there are ways of doing assays to rule out drugs which are likely not to work.  However, as I have noted before, that won't work for me as I have bone mets and no way of taking a live sample at present.  In addition, I don't have the money right now as this isn't covered by insurance.

Sometimes when you read the possible side effects you are more frightened than ever before.  The list of possibilities is daunting.  Downright terrifying.  However, all of the chemo-therapies have pretty prodigious side effects.  It is easy to think that you are going to have ALL of them, or you are going to have the most serious.  Usually, the patient information only lists the most common side effects. Instead of looking at that, I usually go to the paper inserts which are in the boxes called "highlights of prescribing information." This is exhaustive and truth be told, I sit and read it at the computer as much of it is written in medical jargon.  For instance, I learned that "epistaxis" means nosebleeds.

One of the best things about the inserts is that there is usually as section which lists ALL the adverse reactions, with the percentage of people in the study which reported them and listed against those who received a placebo in the trial.  Many side effects are rarer....for instance some of the side effects I had from Xeloda were only reported in 8% of the patients who were in the trial.  That didn't mean that it made me any less happy to HAVE those side effects, but it is worthwhile to note that for most, this side effect wasn't likely to happen.

These sheets are difficult to read.....but I think they are worthwhile.  It might be useful for you to read them and highlight areas to talk with your oncologist about so that you can understand them.  If  you don't have a sheet included with your drugs, or want to find the sheet for something you are contemplating taking, search on the name of the drug and "prescribing information" ,  for instance "Xeloda Prescribing information."  check out the most likely, looking for the link.  For Xeloda, I found this:

http://www.xeloda.com/treatment/side-effects/managing

Down at the bottom of the page is a hot link in bright blue which says  "Please see complete Prescribing Information" with the "prescribing information" being in a bright blue hotlink.  If  you click on that, you are taken to a Genentech download site which will give you a PDF to read.  Take a look...and have a dictionary handy.

Intent

Isn't this piece of graffiti neat? Sometimes I have some trouble with graffiti.  On the one hand, I admire a lot of it for the artwork...on the other hand, it bothers me that people are defacing other people's property.....and of course, not all graffiti is artistic.

When I wrote the post about the Platitudes....I was trying to offer some different reasons for the responses we get from friends, family and acquaintances, as well as offer some reasons for them saying them....sort of to help both sides out.

However, twice I have been surprised by friends of mine.....I forget that they read this too.  At Christmas, one apologized for saying that she had completed two things on her bucket list...That didn't bother me at all...and it is only when I am in a mood, or the circumstances in which it was being said that it bothers me.... Last week, one of the sweetest, dearest friends I know apologized for saying that I was going to be OK....Not necessary.  I understand what they area saying.....it is only sometimes, especially with family members, that I need them to understand that where I am is a very scary place....but if they want to offer the affirmation that I am going to be OK..then that's OK.

There are other things to say....other ways of looking at it....I hope that we can explore and find the way which is best for us.

Platitudes

Platypus, borrowed from http://mudfooted.com/platypus-mammal-eggs-bill/

Today, I got an IM from another stage IV survivor.  She was having a hard day...and was tired of hearing people tell her "you'll be OK."

Another friend of mine who has advanced ovarian cancer also has commented on this...how it makes her crazy because people DON'T know that you will be OK...in all likelihood, those of us in this boat probably won't be OK.  At the very least we will suffer financial set backs, worry, and tons of drugs, hospital visits and procedures.

For many of the people who offer such platitudes, most of the time what they are really saying is what they want for you.  This is an affirmation...which is somewhat mystical thinking...the more that we say "you will be OK" then maybe that person will be OK.  Sometimes, I have run into people who do have that mystical understanding...in fact I have felt it on occasion when speaking with someone who is undergoing a health issue...I sometimes get the feeling that they will most certainly be OK....but this is entirely unscientific and without foundation...and quite frankly, I am usually afraid to speak of it.

With my cousin, when I see her, she will say "You will be OK."  For her, she is saying it to calm herself down as she had breast cancer and finished treatment I think in 2004....so for her, she is absolutely terrified. Our friends and loved ones have difficulty knowing that they could indeed lose us....and so they keep on saying "you'll be OK."

Sometimes, this isn't enough.  We as cancer patients NEED people to understand and commiserate with us, even if briefly.  Sometimes we need someone to acknowledge our mortality and grieve with us before we go on into battle.  I got mad at my husband, because he couldn't do this....it was just too scary for him.

It is a tight rope.  You want to be positive for the person....but sometimes, saying "you'll be OK" falls flat.  So...perhaps the better thing to say would be "I want you to be well.  I hope and pray that you will be OK.  And I really wish you weren't going through this.  If you shouldn't be OK, I will miss you.  I will remember you...and for now, I just love you."