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.