“I regret to inform you that you don’t qualify for the study.”
The study coordinator’s words were a blow. My heart sunk. Apparently, the fact that I had a mastectomy FIRST before beginning chemo is what makes me an unsuitable candidate. They are looking for people who had a tumor that was not eradicated by chemo… WHICH WAS ME….but the study’s “rules” are that patients could only have had surgery after chemo -not before.
My oncologist and I finally agree on something – this is stupid.
After all – the fact that my cancer came back in the exact same spot was almost like a do-over. But I guess rules are rules. Doc Peacock also feels this study is “almost unethical” since a recently published study proves that taking Xeloda after chemo or radiation can increase the chances of no recurrence. This study randomizes patients into 2 categories – those who get the drug (Keytruda) and those who are merely watched taking nothing. No -there is no placebo drug given as Keytruda is given intravenously. But now (likely months or years after this trial was originally submitted for approval) any oncologist worth his/her salt would never recommend their patients not take whatever drug could increase their chances of survival just to be watched in a clinical trial.
Ssoooo -there goes that. Boo
For those unaware of what Keytruda is, its an immunotherapy drug that has been quite successful treating other types of cancers. It just hasn’t been approved for breast cancer yet. That’s what this trial is all about. It was my chance to take a drug that boosted my immune system instead the Xeloda, a chemo drug that harms it.
So now I am back to taking the same chemo pill that I was taking during radiation. Only now I take 7 pills a day for 2 weeks then take a week off. When I asked who came up with that dosage, I was told that the pharma companies dose by trial and error and simply see what works and whats tolerated. oh joy.
Apparently, Americans do not tolerate this drug as well as Europeans because of our crappy diet. We have too much folic acid in all our processed foods and it seems folic acid affects this drug. Me and my big mouth told him that my diet was better than most Americans. He skeptically told me that folic acid is in breads and pastas and most processed frozen type meals. I laughed and told him I haven’t eaten flour, sugar, rice or potatoes in almost three years (ok -the occasional meal nowadays) and that I avoid processed foods and attempt to eat whole foods – simply meat and veggies and that I am not a fan of wine or beer either.
He wow’ed then decided he could increase my dosage by an extra pill. Dammit.
I just finished my first 2 week cycle. Though my stomach tolerates the pills quite well (diarrhea is a common side effect) I AM beginning to get the hand and feet syndrome issue. My fingers and toes are getting shiny and red and beginning to peel in some areas. Of course they are all sore and my joints feel like I have arthritis. I use a lot of lotion and just bought a parafin wax bowl which provides me warmth for achy joints and conditions my skin.
What surprised me was how dry my lips got as well. I realize now that the medicine dehydrates you. According to literature -women over 40 have more of a dehydration issue than any other group. I wonder why?
Now I understand why these pills didn’t affect my fingers and toes so much when I took them during radiation. Not only was the dosage only 6 pills verses the 7 I take now. I also only took them on weekdays and had weekends off. But the biggest factor is that I stopped drinking alcohol during radiation to give my skin the best opportunity to heal and started drinking more water – to help flush the radiation out. Two major factors in keeping your body hydrated. Do yourself a favor and do NOT google images for hand and foot syndrome. It’s pretty horrifying and enough to make me do everything I can to prevent getting that bad.
So BOO! Just when it began to feel like I was getting my life back I get another daily reminder that I’m “still in treatment”. Sigh No more cocktail when I get home from my new 10 hour work days with an additional over 1 hour commute each way -which wouldn’t be so bad if it wasn’t for the bumper to bumper Atlanta traffic. No more yummies in my coffee on the weekends. Heck -I should even cut my coffee intake as well – it’s also a dehydrator. Aarrgh…
BUT…before I go feeling sorry for myself, I need to stop to look at the positives. Is this REALLY such a bummer? I am grateful to have this as my biggest downer! That means I am not fighting to save my life anymore. I am back to worrying about my weight and diet instead of wondering if I will even be alive next year. Thank you Lord!!
Besides – not drinking so much coffee and alcohol is just plain healthier anyway. Sigh… And speaking of health – I will be able to keep up daily walks if my feet don’t hurt. And the healthier my skin is -the faster I will be able to have what I hope will be my final surgery – to give my one boob a partner.
Speaking of which – I never realized how much I took having two breasts for granted. Even having no breasts was a bit easier to deal with. Though shirts didn’t fill out properly at least they hung evenly. Even hangage doesn’t happen with only one boob. Your body isn’t evenly weighted either. Not that my boobs were all that immense, but the loss of about 500 CCs on my left side has thrown my equilibrium off. It changes your gait and posture. Even my belly skin pulls weirdly.
That’s why health insurance has to cover the cost of a breast form (prosthesis) and mastectomy bras. These forms replace the weight on your chest and prevent back aches and spinal damage. And the even out your sweater. Woohoo!
Amazingly -these breast forms are quite expensive. They run from $100 – $375. Well, at least -that’s what they charge your insurance company. You can find far more affordable (and just as good) forms online. The cross dressers know what they are doing! I bought a $30 pair online (which I got in 2 days) while I waited for almost two months for my insurance to approve my request and ship out the lightweight form that was supposed to be best during radiation.
The forms come in as many different shapes and sizes as do real boobs so it’s not so easy to find one that matches your own. In this instance, the cross dressers got it made – they simply buy a pair – like the ones I got online. <—-
The first insurance form I received was too big. Seems even measurements can’t be accurate. The one I have now is a lightweight fabric form that is less painful against radiated skin. My skin was so burnt towards the end that I just met the world as Gail One-Boob; braless and baggy shirts. One advantage of having a completely fake breast is that it does not need a bra. So I got THAT going for me.
The mastectomy bras have special pockets in them to hold the forms. Notice the flap on the bottom of my form below. That is there so you can wear the form in a regular bra and tuck that flap under the cup to keep the form from floating around – or falling out when you bend over. This actually happened to me before I found out what that flap was for. Luckily it was at home with no one around to witness it. Made me belly laugh though.
The fabric form is actually quite stiff. It’s harder than a real breast but not as bad as the rock boobs I had with the expanders. The silicon forms I bought online are heavier but softer and feel more “real”. Then again, I doubt anyone giving me a hug could really tell the difference with any form so who really cares? And I’m hoping to only need these forms for another couple of months so I don’t want to spend too much time and money on them.
So that’s my update these days. I have happily moved back into boring every day where cancer doesn’t slap me in the face every morning. When you DON’T hear from me on this blog its a GOOD thing! I have stayed busy working a new job and finally spending the time with family and friends that I had to put off during treatment.
I should have named this post Pills, Boobs and Lots of Lotion. I may have gotten thousands of hits but they would all be from teen aged boys. Ha!
Smile! And Be a Blessing!