My blood work this morning again showed antibodies in my blood (as the Coombs test said), so they blood bank/lab wanted to find blood that matched these antibodies as best as possible - so the earliest they have blood would be tomorrow. They told me to come back tomorrow, I had them leave the IV in my arm so I don't need to be poked again. My red counts this morning were unfortunately almost identical to those before my transfusion of two units on Tuesday, so the "bump" was gone in less than 48 hours.
My regular oncologist/hemotologist (Dr Advani) was back last night from a conference in Europe, she examined me and gave some additional orders for tests to my trial doctor, who'll continue with me while we try and somehow stabilize my red counts. She didn't think that the antibodies were necessary responsible for the red cell destruction going on (the Prednisone which I started on Tuesday obviously hasn't had any effect yet, as the two units were destroyed pretty quickly) - my spleen is enlarged, which they seen in some people in the clinical trial, but it in the previous few cases where it happened before it resolved itself after you were off the drug (I've been off 2 weeks as of yesterday, and I guess my spleen is still showing evidence of problems). They're running more tests to try and figure out what's happening, including stockpiling lots of blood once they figure out what they want/need. I also get platelets tomorrow as those are going down too low as well.
The doctors agreed I should come off the trial, and go in Monday for some light chemo that's OK for folks with red cell count problems (a couple of days in the hospital - hopefully that's it). Although I feel pretty decent (perhaps it's the Prednisone), Dr Advani surprised me a bit by saying I should ensure my affairs are in order and see my family this weekend, as I am in a fragile state right now with the difficulty keeping my counts at a reasonable level, and things could go either way relatively quickly. It's nothing you want to hear from your doctor at any age, but somehow I think I'm too young ;^) Now Dr Advani never pulls punches nor is ever overly optimistic - I'm sure she got that way being in the lymphoma business for 20 years. She is the most respected Lymphoma doctor you can actually get into see at Stanford, she knows an incredible amount about lymphoma, so I definitely take her seriously but still hope for better results of course - as does she and my trial doctor - so they're doing their "all" to keep me in decent shape. The chemo hopefully will knock back the lymphoma at least a bit, which might help as well - although right now they don't think the lymphoma is in my spleen, so it's probably something else.
I'd certainly feared there could be a bad outcome once the auto stem cell transplant failed so miserably, so luckily I've taken care of most of getting things in "order". I didn't really expect to be at serious risk so quickly I guess, but I have been worried about falling counts since they started in Sept as it seemed like it could be a big complication. After 9 units of blood in two weeks, and two more tomorrow, just to keep my red count "skimming above the tree tops", something is definitely wrong.
After talking to Ali, we made reservations for her to fly home tomorrow night so we can spend the weekend as a family just in case. I hated to disturb her plans at school, but this is a three day weekend for them and she said she wanted to come given the circumstances. I'm certainly happy to have her here - I thought there'd be no problem seeing her in another 10 days for Thanksgiving (thought I'd be between chemo cycles), but I want to make sure to spend time together just in case.
I know I promised more posts on other things - I wish more than anyone that the Prednisone would clear up the red cell destruction problem, but it seems unlikely now. I'll do my best to "hang in there" and get through the next couple of weeks, but the red blood cell problem seems completely out of my control. Hopefully they'll learn more from the extra tests they did today.
Sorry for the lousy news, but I wanted to keep everyone interested up-to-date with the latest, no matter how depressing.
Have a good Friday and weekend.
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5 comments:
Just thought I'd leave a note to let you know lots of your friends are reading the blog regularly. Whether the news is good or bad, our thoughts and prayers are with you everyday.
I second the previous comment. Thank you for keeping us posted, I am sure it is not easy.
Alan, please keep the faith. You are such a tropper through all of this and you're an inspiration to me. Please know that you have so many friends here at Juniper who love you and want only the best for you. Know that we are all with you on this undaunting journey.
Your friend always!
Sherie ...
Alan, I'd like to speak the same words as Sherie, and let you know our hearts and prayers are always with you, ALWAYS!
I couldn't agree more. You will never be a "double loser" in my book. Just the opposite. You are an inspiration to me everyday. It really sucks when bad things happen to good people...just seems so unfair. But you are handling this with grace and courage and I could only hope that I'd be half the person you are if I were faced with the same issues. My prayers are with you...
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