Monday, January 15, 2018

New Year... More Treatment

I am really getting to hate even years!! They are when I have to start treatment again regardless of how long it has been since my last round.

I went back to NIH right before Thanksgiving. My counts were down but my doctor was really optimistic. Unfortunately the analysis of my blood showed cancer in it again ... then in December I had more labs that were about the same as November which confirmed the trend and that I was in the territory for re-treatment.

We are now debating trials... I could do ibrutinb which takes longer to work, but has fewer side effects, but would not likely get me to a complete remission. My other option is dabrafenib / trametinib (D&T). The side effects are a bit off putting but the efficacy is suppose to be much better.  Right now the plan is for me to do the D&T trial. If any of my doctor friends have experience with this one let me know!

All of the drugs under consideration are oral chemo drugs in a class called kinase inhibitors. My understanding is that they are targeted and do not cause stem cell damage like traditional chemo (which we are still trying to avoid for at least a few more years). The D&T drugs separately cause hair loss but combined the risk is less than 10%.

Only two women have been through the D&T trial at NIH so far and neither lost their hair... it is the side effect that is giving me the most trouble, despite a laundry list of others. I am on strike for cutting my hair until I know how they will impact me.

Those of you that know me know my hair is literally like a lion's mane - color, size, you name it.... I have never dyed it (and as someone going on age 46 am very proud of that fact). With the number of moves, illness, etc. I really should have more gray hair than I do. Am wondering if I could get it cut off and have a wig made with my hair.

In my immediate family, short hair is in fashion though. Katt still has Chad buzz her hair off twice a year because she cannot be bothered with it with all the swimming she does. Chad would love to have a bit more hair on his head but his genes have other plans for him.  So I'd have company....

We are working on setting dates for my start at NIH. I will be going to NIH every 4 weeks for a few days until either these drugs stop working, or they get approved by the FDA for my kind of cancer. It hit me the other day when the nurse at NIH filled out the paperwork for work and it asked about how long this treatment would last and her words were "no end".  Am struggling to realize this is my truth and reality....think that is why I've had  trouble about thinking about getting back into blogging.