Yesterday as I said in my last post was D-Day. Met with Dr. Schrier at Stanford. He is the specialist for Stanford in the Amyloidosis Center. He was not happy about the recent results of my heart biopsy where one sample showed signs of the disease. I know now where it is located but how much and if there are any other spots we will never know. He also felt due to these recent results that my lambha light chain count at 114 is too high and wants me at normal 26.
So here we go. I'm staying on Dexadron and Velcade every week. The new treatment is a more agressive chemo, which is the same as I took during stem cell transplant. This is called Cytoxan. I will be taking it by mouth every day. I start out for the first 5 days 200mg and on the 6th day I will take lab work to be sure my white, red cells and platelets are ok. If so, the dosage goes up to 250mg for the next five days and again on the 6th day, check labs and if ok up the dosage to 300mg. Dr. Schrier wants to get me to the highest dosage my body will handle and keep me there for 30 to 60 days until the count goes down.
Side effects are not fun. The same as the stem cell. Hair loss which I don't care. I want to be healthy and protect my new heart. I want more TIME! Neausa, mouth sores, fatigue, all the normal side effects from chemo. I will also have the same chemo effects I suffer now from the Decadron and Velcade on top of all these new ones. I just want to feel good and I so afraid now that this is going to knock me down good.
I'm so scared!
Well this new treatment should start next week and I will update on my progress. I have also contacted heart transplant with the new treatment and wanted to know about future treatment of the heart. I think I will be doing heart biopsy every 3 months instead of 6. I will see what Dr. Dana says today.
I always think about how blessed I am. I have a wonderful husband who loves me and takes very good care of me. He just wants me to be happy and does everything he can to be sure I'm happy. I love him so much. My sons, daughter in law and grand kids are my world. I look into those babies eyes and hope and pray I will be here to see them grow up. Then there is my Mom. What can I say. She has been through hell with me. Seeing her daughter go through a heart transplant, chemo, stem cell transplant and all the other treatments and now this. My brother and sisters are always pushing me to be strong and fight. Then there are my friends. We have such dear friends, too many to list but they are always here pushing me too to fight. My donor family, Evelyn, Ben and the girls blessed me with the most wonderful gift and I thank and pray for them each day. They will always be apart of my life. Forever!!
So, remember every moment is a gift!! Go out and make moments that count.
RIP Auntie Josie. We all love you!
Love,
Debbie
No comments:
Post a Comment