First Course of Valcade

Yesterday was my first course of Valcade. Valcade along with Decadron have been successful in treating Amyloidosis. Although there is not a cure for Amyloidosis, these two drugs seem to slow the progression of the disease. As many of you know, I take Decadron on Wednesday 40mg or 10 little green pills, along with the other 27 pills for my shared heart. The Decadron is a nasty drug and causes many side effects. Each week I have experienced a different reaction to the drug. This past week it was, as I wrote in my blog, being wired. I was up at 2:00AM and couldn't go back to sleep, talking 50 miles a hour and sometimes not making much sense. Usually by today, I feeling fatigue and sore, but so far this morning feel pretty good. Slept good which helps alot. So yesterday, my first course of Valcade went well. I arrived at the infusion center in Santa Rosa at 9:00AM. They started an IV for about 15 minutes to flush the vein and then injected the drug into the IV, just like a shot. I met with the Ongologist Pharmacist who gave me alot of information at the two drugs. These two drugs are successful in treating multiple melanoma, also. I have been diagnosed with that form of a blood cancer but it is in the smoldering stage. That means that sometime in my life there is a chance it could surface, but as luck has it, having Amyloidosis and being treated with Decadron and Valcade will put the multiple melanoma into remission, hopefully! The Pharmacist stressed that these two drugs need to work together and need time. One or two courses will not be enough to see changes in the Kappa and Lamba light chain count. So I plan to give it time, as long as my numbers don't go too crazy.


These days all I think about is numbers. Numbers for cycolsporine, number for white blood cell count, number for blood pressure, blood sugar and yes numbers for Kappa and Lamba light chain. On November 14th my Kappa count was 4 and Lamba count was 206. The normal range for Lamba is 5-26. On Thursday I received my latest results which were very disappointing. I have been on Decadron for almost two months and my Lamba light chain went up to 277. We're going in the wrong direction I told the doctor, what's happening. She said these light chains are so crazy and sometimes they go up and sometimes they go way down. Decadron alone does not lower these numbers and possibly the number could have been alot higher. So now we wait and see how the two drugs together will work to lower these numbers. I will do lab work every Thursday, yes to see the numbers of my white blood cell count, kidney function and alot of other things, before they infuse Valcade on Friday. I will take Valcade and Decadron for 4 weeks and then go off for 2 weeks. I will enjoy not taking Decadron for two weeks!!!! Enough of all that serious stuff. I can just tell you, I will beat this and I will fight this. It is not going to get me!!!!

Yesterday I drove to Vallejo and picked up Tippi to spend the weekend with me. We enjoyed a wonderful evening together. Had a nice dinner, honey mustard chicken and a green salad. Talked for hours about her disease, my disease, our donor families and of course our beautiful donor angels. Tippi's donor is Angelina, a beautiful 28 year old Mom with 6 children who accidentally overdosed. Tippi has communicated with her donor Mom and will meet in April at the annual Donor/Recipient get together held by the Northern California Placement Donor Center. Tippi and I then got our PJs on and watched, guess what! SEX IN THE CITY movie! We laughed for hours! Finally went to bed at 11:30PM and sleep great! Today I would like to take a drive for a few hours either to the coast or up North through the wine country to show Tippi the sights. She hasn't seem too much of the wine country and maybe we can stop for lunch in Healdsburg. That is going to be a sight, two women with masks on who recently had heart transplants. I want to make memories with her that take our breath away! She has been such a support to me and I only hope I have given her the same. She brought her camera so pictures will be posted.


Maxwell's game last night was canceled, so Mark was a little disappointed. He has another game on Sunday and of course the All Star game on Tuesday. Today they are sight seeing and will go to the Hockey Hall of Fame. Matthew met a few friends in Toronto and stayed there overnight. He is enjoying the world of traveling. He will leave on Thursday for Florida to visit his friend Ann Marie and then next month its New York. I'm so happy he is able to travel and see the world. I know what a feeling it is to see other places. I have so many memories of my trips to Europe that it gives me hope to someday go again.


Have a wonderful weekend and I will post pictures soon. Tippi and I will enjoy making memories that take our breath away! This is our second chance in life to make memories that last forever!


Love,
Debbie