I started a post a week back called Scared. Well I had good reason to be. Became drug resistant to Gleevec and went in to full blow blast crisis. I am writng from a hospital bed at the University of Chicago medical center. This took no longer than week to happen. Good news it looks more and more like mylogenous chromosone mutation so I won't have to go through bone marrow transplant. I have been on some stuff called Hydrena or Hydrea don't know which is bringing down my WBC blood count rapidly. Don't have any idea when I will get to leave but not too soon I hear. Just glad to have survived the whole thing. One thing for everyone to know. If you feel the slightest bit off get your blood tested. I wasn't due for another two weeks and I know by going it probably saved my life.
Posted 27 January 2012 - 07:53 PM
Wow, glad you got it checked out! How long had it been since your last visit to the onc?
Posted 27 January 2012 - 07:57 PM
Hey there, jimit, that's quite a story! So glad you went and got checked, and that they are taking care of you. Do you know yet what mutation it is? PLUK when you do, thanks. Also, will you please give us your CML history (when dx'd, WBC etc., TKIs and dosages, any ups and downs, all that stuff), so we can get a picture of the context in which this happened to you so suddenly. Kudos to you for having the sense to go get your blood checked!!
Take care, and let us know how it goes, please,
Be alert, but not overly concerned.
• Dx Oct. 22, 2008, WBC 459k, in ICU for 2 days + in hospital 1 week
• Leukapheresis for 1 week, to reduce WBC (wasn't given Hydroxyurea)
• Oct. 28, 2008: CML confirmed, start Gleevec 400mg
• Oct. 31, 2008: sent home when WBC reached 121k
• On/off, reduced dose Gleevec for 7 months
• April 2009: Started Sprycel 100mg
• Sept. 2009: PCRU 0.000
• Sept. 2011: after 2 years steady PCRU & taking Sprycel 100mg before bed, quit Sprycel (with permission)
• Currently: still steady PCRU, testing every 6 months 🤗
— Fatigue, hearing loss continue, alas, but I prefer to think it is all getting better!
Posted 27 January 2012 - 07:57 PM
I am so sorry to hear about your situation and praying things get better soon. Please keep us informed as I know everyone on the group will be keeping you in their thoughts and prayers. Skittles
Posted 27 January 2012 - 08:00 PM
About two months earlier. I was fine he suggested waiting 3 months before next blood test. Started feeling shitty after 2 1/2
Posted 27 January 2012 - 08:14 PM
So glad you are doing better and hope you will be out of the hospital soon. Do you know what your last PCR test result was, the one before this crisis started? What were the symptoms you had that made you decide to get checked early? Please keep us posted, we will all be praying for you.
Posted 27 January 2012 - 08:47 PM
Please keep us updated, we are all here for any support we can offer. You said it best, know your body, when it doesn't feel right, it usually isn't.
Take care & God Bless
Posted 27 January 2012 - 09:08 PM
If you are truly in "Blast Crisis" then a transplant (BMT) would be needed. If you actually have a Kinase Mutation (instead of a secondary chromosome mutation) then another drug might work for you, probably Sprycel. The Hydrea is only a temporary solution, and will not work for the longer term. You should ask your Onc if you have a kinase mutation, and if yes, which one is it.
Posted 27 January 2012 - 09:31 PM
Just read your posts, I am so sorry for what you are going through. You are definitely at the right place, sooo many to give advice, listen and help in any way! The people I have met on here are wonderful and have helped me so much with my new diagnosis (September 2011). I hope you cAn get out of the hospital soon and will pray for you!
Posted 28 January 2012 - 03:31 PM
Sorry to be a pain, but I obsess about these things. What were you feeling that made you go get your blood checked? Just wondering what I should be looking out for. My shoulder blades were aching last night so badly, it made me wonder if the marrow in there was pumping about WBC's like crazy. Anyway, would appreciate knowing what concerned you enough to go to doc.
1 user(s) are reading this topic
0 members, 1 guests, 0 anonymous users