I'm so sorry for taking so long to get back to you. I was having trouble logging back into my account and there has been a lot happening in my life these days. I don't feel comfortable giving you his contact info. directly, so please go through Katie Schoeppner. She works for Be the Match and puts people in contact with other people who have been through similar situations. This is how I was put in contact with another blast survivor. kschope2@NMDP.ORG
Blast Crisis CML
#41
Posted 01 February 2016 - 09:20 PM
#42
Posted 02 February 2016 - 05:02 PM
It's OK! I'll definitely send her an email! I really think we are in the same situation! All of your questions and concerns are so similar to mine! My husband was diagnosed in blast phase, so it's a little different than your dad. It's been very hard finding people in the same situation. I've joined numerous groups on Facebook and have found a couple people who are in or were in blast phase. It's been nice chatting with them. There's also a page cml plus bmt. If you'd ever like to join, let me know. I wish you the best! My husband has his first appointment with Dr Talpaz on the 12th! Good luck with your dad!
I appreciate your understanding! I am thinking about you and your husband! My main goal these days is to get anyone and everyone I can to join Be the Match!
#43
Posted 07 February 2016 - 10:44 AM
Courtney,
A few hours drive west to the Mayo Clinic would be worth the trip, in my opinion, but then I have the highest respect for the doctors at the Mayo. The doctors at the Mayo told more than 5 years ago I would need a BMT (failed 5 TKI drugs) and they were correct, 80+ days post transplant (done at The Ohio State James Cancer center) doing well. My wife and I have made the trip through Madison to the Mayo many times, it's an easy drive all highway. Good luck.
Mike
#44
Posted 07 February 2016 - 02:04 PM
Courtney,
A few hours drive west to the Mayo Clinic would be worth the trip, in my opinion, but then I have the highest respect for the doctors at the Mayo. The doctors at the Mayo told more than 5 years ago I would need a BMT (failed 5 TKI drugs) and they were correct, 80+ days post transplant (done at The Ohio State James Cancer center) doing well. My wife and I have made the trip through Madison to the Mayo many times, it's an easy drive all highway. Good luck.
Mike
Hi Mike,
It's so wonderful to hear that you are doing well! I'm so sorry to hear that you went through so many TKI drugs, that is totally frustrating. I have some questions, however will understand if you do not want to share! Did you go through a blast crisis? Did you find a "perfect match" for your transplant? They are considering my brother and myself at this time for transplant because my dad had no great matches.
Thank you!
#45
Posted 07 February 2016 - 05:37 PM
Sorry to bombard you with questions but we don't hear from many people with CML that went to transplant.
It gives me hope that if the TKI stopped working maybe I could survive a transplant.
10/01/2014 100% Diagnosis (WBC 278k, Blasts 6%, Spleen extended 20cm)
Cancer Sucks!
#46
Posted 08 March 2016 - 01:13 PM
Courtney,
A few hours drive west to the Mayo Clinic would be worth the trip, in my opinion, but then I have the highest respect for the doctors at the Mayo. The doctors at the Mayo told more than 5 years ago I would need a BMT (failed 5 TKI drugs) and they were correct, 80+ days post transplant (done at The Ohio State James Cancer center) doing well. My wife and I have made the trip through Madison to the Mayo many times, it's an easy drive all highway. Good luck.
Mike
How are you doing post transplant Mike? My dad is still really struggling. They are going to switch him to Ponatinib because the Sprycel is no longer working. We are hoping to get him to transplant as soon as possible. He is transusion dependent now. My brother is likely going to be my dad's donor because he didn't have any perfect matches on the registry. My brother is a 6/10 match. I am interested to hear more about your story. Thank you!
#47
Posted 08 March 2016 - 01:57 PM
This was interesting reading:
http://www.news-medi...ast-crisis.aspx
Researchers discover key reason why form of leukemia progresses from chronic phase to blast crisis
Diagnosed 11 May 2011 (100% FiSH, 155% PCR)
with b2a2 BCR-ABL fusion transcript coding for the 210kDa BCR-ABL protein
Sprycel: 20 mg per day - taken at lights out with Quercetin and/or Magnesium Taurate
6-8 grams Curcumin C3 complex.
2015 PCR: < 0.01% (M.D. Anderson scale)
2016 PCR: < 0.01% (M.D. Anderson scale)
March 2017 PCR: 0.01% (M.D. Anderson scale)
June 2017 PCR: "undetected"
September 2017 PCR: "undetected"
#48
Posted 28 March 2016 - 08:27 AM
Blast cells as of last bone marrow biopsy a couple of weeks ago went from 28% at diagnosis in blast phase early December to 68%. Now on ponatinib. My dad got pancreatitis and was in the hospital for 5 days after being on the drug less than a week. There were no mutations at diagnosis July of 2015 in chronic phase and now there are several. I don't understand why TKIs haven't worked. Now it looks like we have to move to treating the disease like AML. I love my dad so much and he's only 56. This is so difficult.
#49
Posted 28 March 2016 - 10:07 AM
Blast Phase CML that has transitioned to look like AML means a transplant is almost certainly required at this point. The Ponatinib may help a small amount but will not be useful over the longer term. He may also need some interim chemotherapy while awaiting the transplant preparations to be put into place. All efforts should be put toward transplant preparation.
#50
Posted 28 March 2016 - 12:58 PM
Hoping for the best for your Dad Wisco
08/2015 Initial PCR: 66.392%
12/2015 PCR: 1.573%
03/2016 PCR: 0.153%
06/2016 PCR: 0.070%
09/2016 PCR: 0.052%
12/2016 PCR: 0.036%
03/2017 PCR: 0.029%
06/2017 PCR: 0.028%
09/2017 PCR: 0.025%
12/2017 PCR: 0.018%
Taking Imatinib 400 mg
#51
Posted 30 March 2017 - 02:49 PM
The hematopoietic cell cycle regulator, MS4A3 may play a role in both primary TKI resistance and blastic transformation of CML.
Background: We have previously demonstrated that the transcriptional profile of diagnostic CD34+ cells from chronic phase chronic myeloid leukemia (CP-CML) patients exhibiting primary cytogenetic resistance to imatinib overlaps with that of patients with myeloid blast phase CML (BP-CML) (McWeeney et al. Blood 2010). These data suggest that primary resistance to tyrosine kinase inhibitors (TKIs) and advanced disease are biologically related. The hematopoietic cell cycle regulator, MS4A3, was identified as a principal component of the gene expression classifier predicting response to imatinib. Low MS4A3 correlated not only with primary TKI resistance, but also with shorter overall survival in CP-CML (n=35). Consistently, microarray (n=19 CP-CML; n=16 BP-CML), qRT-PCR (n=22 CP-CML; n=17 BP-CML), and immunoblot (n=3 CP-CML; n=3 BP-CML) analyses demonstrated that MS4A3 mRNA and protein levels are reduced in CD34+ progenitor cells from BP-CML versus CP-CML patients, with no difference between CP-CML and normal CD34+progenitors (n=3) (Eiring et al. ASH 2015 #14). These data suggest that MS4A3 may play a role in both primary TKI resistance and blastic transformation of CML.
Extract of MS4A3: A New Player in Leukemic Stem Cell Survival in Chronic Myeloid Leukemia
#52
Posted 31 March 2017 - 08:03 PM
#53
Posted 01 April 2017 - 09:38 PM
Occasionally I'll have a patient with MM and one with CML, and so far, every single one of them has had a low vitamin D count at some point in their medical history. I have to say, too, that some of them don't seem to have been regularly checked after having been started on Vitamin D3.In addition to everything your father is doing, he should consider getting his vitamin D level tested. I suspect his level is below normal or low normal (normal is considered 30-50 ng/ml, but research is suggesting this is insufficient where cancer is concerned).
Vitamin D is known to help progenitor malignant blood cells including malignant blast cells to differentiate. It can't hurt and perhaps could help. I maintain my vitamin D level above 60 ng/ml and prefer to get it up to 70-80 ng/ml.
http://www.ncbi.nlm....les/PMC1906205/
http://www.ncbi.nlm....les/PMC2879394/
http://www.ncbi.nlm....les/PMC3166406/
Also tagged with one or more of these keywords: blast crisis, sprycel, bone marrow transplant, stem cell transplant, fatigue, low counts
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