Wednesday, March 14, 2018

Side Effects Suck!

OMG can I just say how tired I am of dealing with side effects issues from cancer meds?!  This s*it sucks!  I have been dealing with cancer for almost 7 years now, and while I am grateful to be alive it's not really a good life.  Part of me feels like I have no right to complain, yet the other half says, "hell yes you do!"

As a metastatic breast cancer patient I am treated as a patient with a chronic disease that needs to be monitored and treated in times of "flare-ups" or growth or change.  This means that in order to keep my disease in a "stable" or even remission state I have to be on meds, meds that block estrogen and meds that block or attack the cancer.  These meds are a pain in the ass, and because I am so lucky not only to deal with this, I have the added bonus of not being able to tolerate most of the common medicines used by doctors for my disease.  Ibrance kicks my butt with severe bone aching fatigue along with seriously depleting my immune system and entire blood counts putting me at extremely high risk of anything contagious.  It does work in killing my cancer and allowing me a chance at being back in remission for my disease but the risk is to much to my body that the doctors try other meds.  Yay.  I hate playing around with medicines like a test subject of a mad scientist.

The doctors tried various doses of Ibrance over the past year in hopes that my body would tolerate it better but it turns out that the lower dose isn't strong enough to kill the cancer and if you know anything about cancer then you know if you give it an inch it will try to take a mile.  So after a year of playing around with Ibrance my oncologist decides Afinator is our next option as it is in a different class of oral chemo med as it attacks the cancer differently than the class that Ibrance is in.  Ok swell. 

My whole experience with Afinator has been a nightmare from the beginning.  A very common side effect is mouth sores and hideous headaches.  I'm talking severe blistering and canker sores so bad you can't smile or talk let alone eat.  Within the first 3 days I had horrible migraine like headaches that I couldn't go to work and my mouth erupted in sores.  The doctor knows this and puts in a prescription for something called "miracle mouth wash" this is $55 for 8oz that is not covered by insurance and only special compounding pharmacies can make for you.  It took over a week for me to finally get my little 8oz bottle and by that time I was miserable with mouth sores that it did little to nothing to help.  So the doctor lowered the dose, said to take a week off the meds and try again with the lower dose.  Yay we are playing around with meds again.  So.  Much.  Fun.  On the lower dose after a week I developed blistering sores all over my scalp as well as my mouth and this time one blister on the inside of my lip started bleeding.  The nurse says I needed to be taking this med inside of a gel capsule.  That the drug company won't make it this way, but that it is very well known in the breast cancer community that this medicine needs to be taken this way to help prevent the sores and that I can buy them anywhere, CVS, Target, Walmart, Walgreens, etc. anywhere with a pharmacy.  Ya no such luck.  I went to CVS, Riteaid, Costco pharmacy and nope they didn't sell them and didn't know who would.  So I figured maybe a vitamin supplement company like GNC would sell them.  Nope.  Ok internet it is, if you can't buy it on the internet then it doesn't exist right?  Thank goodness for Amazon.  (I love Amazon)  I have no idea what size of empty gel capsule to buy and they only have them in bulk so I buy the first one I find $7.99 and 1000ct. to be delivered in 2 days.  I am resigned to trying this although I really don't see how this will help my scalp, but if it helps the mouth sores it's worth trying.  The doctor has me on a 2-3 week break from these fun meds to completely heal.  We were hoping the newest blood test would show good results, and they were supposed to wait until after my 42nd birthday to share said results.  Nope 4 days before my birthday I get a call that there is cancer DNA circulating in my blood, and I need to get back on meds ASAP the day after my birthday, just as I was finally completely healed from all the sores.  Doctor suggests that we lower the dose again to the smallest amount and take them inside the gel capsules and let's wait and see what happens.  Fingers crossed that it works, and we can start moving back up the dose ladder so I can get back to a stable status.
It's now been 11 days and my mouth is pretty normal, sensitive to heat and spice but no blistering sores, however sores appeared all over my scalp again 2 days ago and are now starting to show up on my face and I've had a constant horrible headache for a week.  I don't like taking over the counter pain meds on a regular basis because of the damage to my liver and kidney counts and I only take my Dilaudid if I absolutely have to.  So I am feeling really peachy right about now.
No were in my internet research about Afinator does the scalp blistering appear, however I do find fellow patients complaining or reporting it on blogs and such and have tried steroidal treatments that help and some natural home remedies that work for the mouth sores that don't cost over $50. 
Why doesn't my doctor know about this?  Why do I have to do the research if she sees patients like me on these meds every week?  I am obviously not the only one, so why do I feel that way?

Because you have to be your own advocate.  This is a common statement in the medical community.  Sad but true.  Doctors are called practicing physicians for a reason.... they are still practicing to get it right!  Not to mention they are human and they see a lot of patients, especially with breast cancer rates rising.  

I get caught up in placing my trust in my oncologist and putting my life in their hands.  I need to remember to retain some of my own control over my health and treatments.  It's my body and my life.  I am a mother, wife, sister, daughter, friend and people depend on me.  No one will protect me or look out for my best interests like myself and I need to remember not to give total control of my health over to my "practicing physician" and look into options to minimize my negative side effects so we can kill this cancer.

I hope this blog helps those of you fighting cancer with me not feel alone, you have a friend in me.

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