Wednesday, April 8, 2009

MDA recap

Sorry I was so cryptic in yesterday's post. I was still tired from the day before and was having a hard time organizing my thoughts.

For the most part, my CBC numbers were normal with the exception of a liver enzyme and my creatinine level. My baseline creatinine is usually .6, but on Monday it was 1.2. I asked my doctor if I could be dehydrated since creatinine levels correlate to the kidneys. She didn't think so based on my other numbers. I have to go see my local oncologist next week to have another chemistry panel pulled to see if these numbers start behaving. Dr. K. said that the elevated liver enzyme could be due to Valtrex. I find it funny that I've been taking this drug off and on for over two years and it's just now starting to give me problems.

I still don't have any preliminary results from the bone marrow biopsy. Chris and I are just waiting to hear what percentage of blasts my marrow shows. Less than five percent is still considered cancer free. I'm hoping for zero.

A new P.A. performed the procedure and although she was nice and expeditious, she still managed to puncture my hip bone at just the right angle to be extremely painful. On a good day, bone marrow aspirations are uncomfortable. When Teri or Tommy do them, they are an absolute breeze. On Monday, each time the P.A. pulled marrow out my right leg would start to shake uncontrollably and I could feel my heart pounding against my ribcage. She stopped and asked if everything was okay and I told her to keep going just to get it over with. I know from experience that there is nothing to be done if the needle comes in at the wrong angle. On a positive note, she said that both the marrow and bone samples were excellent. Thank God for small victories.

Because you have to wait 48 hours before getting the puncture site wet, I have another hour and a half left before I can shower. I am miserable sitting in my own filth. It's an exaggeration, but I would dearly love a hot shower and to be able to shampoo what little hair I have. It's currently sticking up in pointy little wisps.

During my meeting with Dr. K. I got looked over for GvHD. My joint flexibility is still good and the strange brown spots on my leg are still missing. My skin is constantly itchy, but I will gladly suffer through it not to be on oral steroids. I'm still retaining a bit of fluid which concerns my doctor. I learned that the fluid can cause a hardening of the tissue which is another manifestation of GvHD. It would mean that my face and abdomen would be permanently distorted. I definitely did not groove on that little bit of information. I like to think that I'm a minimally vain individual, but I don't aspire to look like Quagmire on a permanent basis.

The one part of the visit that caught me off guard was the mention of additional chemotherapy. I don't know why I thought having a second transplant would be the end of things, but I did. When Dr. K. started talking about maintenance chemo, I think my brain leaked out of my ear. There is no standard of care when dealing with chemo post transplant for ALL t:(4;11). There aren't that many adults who have survived it and so there aren't that many successful studies out there. She mentioned Vidaza, which is a maintenance chemo given for AML, but there's no conclusive proof that it would be helpful. Another monoclonal antibody was mentioned, but she admitted that she wouldn't even know how much to dose me. We're essentially wading into very new territory.

I was told that if I'm going to relapse again, it will most likely happen in the first 12 months following transplant. I'm at month 7. The idea behind maintenance chemo is to give me a fighting chance to beat this thing. I was reminded of how aggressive this type of leukemia is and how very in the dark we are about it's treatment. My doctor is presenting my case to the other transplant doctors next week in the hopes of coming up with a firm treatment plan for maintenance. I've been handled by half a dozen of the transplant docs and know that there are some stellar intellects on the team. I just hope that one of them hits upon the right combination of chemicals to keep me cancer free.

So now you all have it. I'm still having a hard time with the idea of receiving more chemo after the last two years, but I'll come to terms with it. I'll be on pins and needles until I get that preliminary report, which I hope will come in today. As soon as I know something, I'll post.


Anonymous said...

Easter is about hope, victory, and love-God's timing is always perfect to us with His message of hope. Comes at a good time with this new news from your docs. 7 months down and a few more to go-Keep up the good fight and place your hope in Jesus for your peace and joy regardless of life unfair circumstances-

Anonymous said...


I follow your blog as I am also a post transplant for ALL (t 4:11) survivor. Keep up the fight. You are inspiring to me. I will keep praying for you.

Laura Grammer