Phase VII
I am feeling very fortunate with my October 18th appointment being able to have Doxil available. My numbers continue to trend down to 1800, lowest for the year… Woo Hoo… The side effects that I was very nervous about are not that bad and I am very fortunate not to experience them for too long. Day 1 and 2 after chemo are what I call my steroid high days with my Emend. Day 3 after chemo I sleep on an off all day, I attribute that to not being on steroids on day 3 so it is like a crash. We have two boy cats (Boomer and Bonzi about 3 years old, brothers) that love nap hour(s) too… You will see me sleeping and one or both of them with me sleeping, sometimes one in under the blankets and you just see a paw or two with the other sprawled out next to me or laying on me. My family just loves day 3 to day 5, I don’t know what I want to eat, or what sounds good. So preparing meals those days are difficult at best. It starts with me asking, “what shall we do for lunch, or dinner”, followed by suggestions from Lynn and Megs, my mom, and sisters. Guess my face tells them their suggestions are not hitting the mark… They have all resorted to “what will you eat today”… Go figure, so there usually is a lot of takeout and a variety, more than I could ever eat because I just don’t know what will taste good, so we get whatever sounds good me... It’s the platin drug thing foods simply taste different... I have been asking for Kentucky Fried Chicken… I like their original recipe chicken (breast or strips) and coleslaw… So that is usually one of the things we have for dinner during the week after treatment. When the commercials come on for KFC we laugh as my mom and sister both told me to try it when I am not wanting anything as that is something they were always able to eat too… My mom actually picks some up for me when she knows I am going to home alone on a night so she knows I am eating…
With Doxil there are potential skin issues that made me really nervous in the beginning. With this chemo agent I need to watch how warm things are that I touch. From the water I wash my hands in, to preparing and cooking meals. Neuropathy is always a concern on chemo and yes I have some of that going on. I am fortunate that it is manageable and not slowing me down. Some days it is more prevalent to me than others, right now it always subsides to a manageable level if you will. Barb says that is because I keep moving, I don’t lay around too much, even on my sleeping/napping day I walk around the house and such, what I call puttering.
When I was first put on Doxil and carboplatin the infusion nurse talked to me on how to take care of my skin and manage the symptoms, what to look for and such. Seems with this combo you need to keep your skin temperate, not exposing it to extremes. Avoid acidity or spicy foods. I noticed heartburn seems to come on more easily now right after treatment. I have noticed that I go from cold to hot feeling wise in like 0 to 60 seconds. I try to drink lots of ice water or cool water and always have lotion with me. When I am home I have my one insulated cup filled with ice water and sometime lemon to change up the flavor. My favorite lotion that seems to really help me is Evelyn and Crabtree Gardener’s Hand Therapy and Utterly Smooth. Gardener’s Hand Therapy is my favorite. I use it all over including my face. Don’t need a lot of it; a little dab will do ya… My sister found this to be really helpful when she was going through radiation for Breast Cancer. She would put it on after treatment and wash it off before the next. It really helped her through that regimen. Any rashes or irritations I see go away when I use these lotions almost immediately. I lotion up after a shower or bath and through out the day as I feel I need it. I have a variety of cold packs that I use in various sizes; they really help when I am hot to cool me down quickly. This really helps keep me comfortable, which is a good thing…
Found another article posted by CBS about the shortage, still no real answers
It does talk about the importance of drug companies telling the FDA of potential shortages, which would allow the medical community to adjust accordingly. This they said avoided 99 serious other drug shortages… I was surprised again to learn that it is not a mandatory requirement. Hence this is what I would attribute to a laxed response by Jennsen to the Doxil shortage that the manufacturer had to know was not going to be only a few weeks and other drug companies as well.
On October 31, 2011 CBS reported President Obama’s attempt to address the serious issue of drug shortages in the US
Still no real response except a lot of words with VERY little news coverage… So concerning and frustrating to patients that this effects. I am a member of a online support group for Ovarian Peritoneal Cancer patients and am seeing patients being put on other protocols due to the Doxil issue. I am grateful that I am getting the protocol, I have only missed one cycle and feel very fortunate.
November 2, 2011
This discusses the Gray Market in pharmaceuticals, with suppliers obtaining short supply drugs and selling them at a premium price to pharmacies and hospitals...
I cannot believe in today’s age that is going on, I know drug manufactures are businesses, but to put patient lives over profits makes me really ashamed of us as a caring nurturing nation. Really, not profitable to make it so stop and don’t look at whom it will hurt without it’s existence? And suppliers stock piling short supply drugs and then marking them up 600 times more than they should be. And then not respond to government inquiry to price gouging, really… They should have to pay the profits they are reaping in fines and penalties, it is taking advantage of patients at a time when they need support, encouragement and needed treatment that is expensive on a good day. Words escape right now.
Now they are questioning is this Obama trying to grab attention for re-election? Really… Makes me laugh… Someone needs to do something, as obviously the system is not working as is should. Big business does not have a conscious. It is not human. Many CEO’s drive their companies to bolster share value as they reap millions in dollars in stock options. It was thought that CEO’s would take care of companies when they are paid with stocks but in today’s pay packages and CEO turnover this philosophy does not work and the companies do not grow their markets, they stay stagnate to shrink while the stocks are inflated for the short term gain. This is not a problem in any one sector of business it crosses all venues of big business…
Okay time to get off my soapbox… (Smile). I am going back to happy and light hearted… I will continue to look for updates on the drug shortages as I find more information I will include it with my blog, right now I am happy that I am able to receive my treatments as planned and my numbers are trending down… Woo Hoo. Happy Dance around the house… Makes me laugh thinking about dancing around the house, as did you know people can see you dancing in the living room if your drapes are open…? A friend saw me dancing up a storm when Megs was like 3 and we were dancing to a song she liked. Anyone going by our home could only see me and my friend said Cath why were you dancing all by yourself in your living room, you know people outside can see you… No one could see Megs, they only saw me… <Laughing>!!! Yes, I can only imagine how many times that has happened over the years! And yes, I still am dancing in the living room when a song comes on that I love…
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