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)