Hi Westiemac,
My dx was based on my WBC count which was at 28,000 and platelets were over 100. After becoming a more informed consumer I now think that I would have preferred to wait longer. Once you start down the slippery slope there is no turning back.
My platelets were always good until I had chop + r treatment and since then are always under 100. My platelets are now at 48.
I just came out of the hospital from a short visit. Went in Monday for regular CBC and my HGB was below 8.0 which is the mark for red-blood transfusion. While there the oncologist looked at a cyst that I had on my back. She wanted me to have it checked out (go in to the hospital for infection check out and also have the x-fusion done three) as I have been on Levaquin to prevent infections. Had the surgery done but the blood x-fusion took longer as there were anti-bodies that they had to match and were not available in the hospital blood bank, requiring them to search other blood banks.
Reading the forums and additional information Rituxin seems to be a first choice for many first time dx. Also many continue on Rituxin for maintenance, I was not that lucky.
Having done a lot of reading on CLL I now wish I had a better understanding of what I was getting into and now ask the oncologist a lot of questions before treatment.
For information on Treanda I follow the forums on this board and an interesting article by CHAYA on her information forum.. I wish I had known about her articles earlier as she has demystified a lot of my questions on CLL. Please read her articles and educate your self.
One thing is for sure, no two CLL consumers have the same reactions to chemo. Wish I was one of those persons who have gotten along with Rituxin for years.
As I had written earlier I had told my oncologist that I was not ready for Treanda. I had shown her an article on ARZERRA (humax-cd20) and she did not think that was available yet. While in the hospital she informed me that she had called the drug rep and the rep was going to help her get the supplies. I will be talking to her about a possible treatment with Humax-CD20.
It is a very difficult decision on what treatment to use for CLL as there are so many available and the supposed gold standards are changing constantly. Also adding to the confusion is where you are being treated as there are many different approaches to what your treatment should be. My best advice to you is to educate your self and be comfortable with the choices you and your oncologist make.
I am also in the grand parent category (8). So we all have a lot to look forward to over the holidays. I will keep you updated on my next treatment and be sure to keep us posted on your results from Treanda.
Regards - Fred
