We have returned from our visit with Dr. Byrd. Dr. Byrd and his staff are very kind, professional people. I only wish the drive was shorter to consult with them. I met one of my CLL online buddies from Florida at OSU, so that was a neat bonus.
The skin lesion on my leg, (that has been biopsied twice) was determined by the OSU team to be a leukemic infiltrate. This means that the leukemia cells are now emerging through my skin. They took one look at the biopsy report and the lesion and didn't bat an eye that it was an infiltration. They said we could expect more, but to remain vigilant with any and all lesions (biopsy, etc.) due to my increased risk of skin cancer.
My hemoglobin had improved from 7 when I was last hospitalized in August to 9.8 today. I have made it during daytime hours without oxygen for the past few days. So that is a praise! The hemoglobin should be 12-14, so I still have a way to go for it to be in normal ranges, but it is nice to just be able to breathe comfortably on my own without oxygen.
Dr. Byrd and I have agreed upon a tentative plan (and I state "tentative" as we all know how quickly the best leukemia plans can change directions) to try to get me through the winter (flu season and increased risks for infection) without any heavy chemotherapy or other treatments. I will see Dr. Byrd again in December. His fellow said that "band aid" type treatments of things like high dose steroids could be used if my very enlarged spleen continues to increase and needs reduction. (Spleen is 10 cm below the left costal margin -- no wonder it feels as though I tote around a full term baby all the time).
Then the plan is to return in March to OSU (post-flu season) to readdress the topic of treatment with Revlimid (the treatment I declined in July because I was not comfortable being in an early phase of a clinical trial. More data will be available for consideration in March). There will also be a couple of other clinical trials opening in March, Dr. Byrd told me, as well as FDA approval of the drug Flavopiridol is expected.
Dr. Byrd and the fellow also talked to me about transplant -- they said we have to make all decisions in the context that I will be headed to transplant one day -- they said that every year advancements are made and survival rates improve. So each year that I can survive, is a year closer to a better chance to survive a transplant. I do not have a sibling match for a transplant, so we will have to turn to the National Donor Marrow Registry to find a matched unrelated donor for me. When that time comes, we may need to call on friends and family to be tested to see if anyone is an unidentified, secret "twin" to me! Wouldn't that be scary to learn that you are my genetic twin? YIKES!
Severe right hip and back pain flared up on Saturday, so the trip and walking were difficult. I look forward to physical therapy tomorrow to try to work out that pain. We appreciate your prayers.
This is a photograph of the front the Ohio State University Medical Center where I see Dr. Byrd and team:
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