ibpatti32's Cancer Blog
December 16, 2009
I went to the LLS website & a doc that goes by the name of Trey sent me much need info which I have a file of which I am trying to condense of realistic questions for THURSDAY. What I did learn is that before they usually proceed with a transplant of any kind ( stem cell, cord blood, or bone marrow, what I need to know first before I proceed with one particular line of questioning is: How many blasts do I have? If you are under 10, you are still in chronic, 10-19 in accleerated in which they move fast, beyond 20 you are in blast crisis and the prognosis is very poor.
What I did learn is that if for any reason Gleevec needs to be D/C’D, then usually their next drug of choice would be is, “Sprycel”, which is also from Novartis. Then there is Tasigna which is generally viewed as a stronger form of GLEEVEC that works in a similar way as Gleevec ( in overly simplified terms). So it can be thought of as a stronger form of Gleevec. Sprycel binds to the BCR-ABL differently that Gleevec or Tasigna, and binds in a different BCR-ABL location, which is why it doesn’t violate the Gleevec patient. (If Tasigna was not a Novartis drug, it would violate the Gleevec patient since it is so similar in function). But, overall, both Sprycel & Tasigna are very effective frugs. Tasigna is approved for Chronic & Accelerated CML Phases, but not BLAST phases. Sprycel is approved for all 3 phases. Tasigna has a bloodstream half life of about 17 hours while Sprycel is only about 5 hours. So, there you have it. That is the back up drugs to experiment before the tranplant plan but again I DO NOT know my BLAST COUNTS and that will determine everything If anyone has heard of this regimen or know of knows of someone that has been through it, I would so appreciate their input on any level. What I am fearful of is the changes that have taken place in my body in the past 3-4 months. The large blood filled bolus’ in various parts of my body, the weekly injections. I put a RX. skin cream on my hands at bedtime followed by petroleum jelly which the dermatologist recommended but they look as though I have a severe skin disorder. Then, I always sleep in gloves in an attempt to try & heal these areas. These bolus’ have been biopsied and with all of the tests they ran on them, the only conclusion was that it was blood, or so that was what I was told. I am going to upload just one of them to show you what they looked like, I’m certainly no doc but when you suddenly have these appear on your body and most of them start as a dot size and will grow into a good golf ball size within just a few hours. That’s just not normal, I do not need a doc to tell me that. If anyone has had any of this and would like to share it with me, I would really appreciate it.I have spent the past 2 days getting all of my notes together for I cannot continue being in the dark. Whatever lies ahead, I’ll be ready and somewhat educated on what needs to me done. This is now in GOD’S HANDS. There is still so much I would like to do but if it isn’t meant to be then I won’t go without a fight. So, watch out, because I can get very determed especially when it would come to not being the “Mother of the Bride”, the GRANDMOTHER of my first grandchild. These are huge monumental times in my children’s lives & they may be living their own adult life but they do want their MOMMA at their side.
On the same topic, sort of, if you know of anyone that is healthy and would like to be tested to be in The National Bone Marrow Registry, I will get the link. Though all of my kids are still in it, they all say what it would mean to them to get that call, that something inside of them had the potential to save another ones life. they feel as though it would give them even more purpose. Also, if anyone knows of people that can donate blood and/or platlets please tell them how important they can change many folks lives. I would have never survived the crisis in 1997 if selfless people had not taken time out of their busy schedule to donate. Did anyone see the movie,” Seven Pounds”? If so, I am curious as to what your thoughts were.
Preparing list of questions for the 17th, any ideas?, 
1 comment)
Hi Patti;
I missed opening your post as I did with most of them, put them aside till after Xmas. I can see you are determined to be ready for the Dr.’s and have your notes in hand. As I posted to you upstream, I haven’t a clue what those rosy red clusters mean, nor do I think they look like something that should be there for long. I hope you have contacted your Doctor by now. This just doesn’t seem right and they do look mean. I am praying for a positive outcome. I have never thought to join the programme since I do have cancer. I’m sure that cancels me out as a prospect NO? Anyway I will be watching for your next post. Take care and Happy New Year
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Thanks for your support - 
