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Blast crisis

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My husband was diagnosed with CML at the end of February this year. His blast level was at 8%. He is 48.

Our local Consultant put him on Nilotinib and his initial response was great and the white cell count reduced reduced week on week for a month. Then the platelets and neutrophils dropped below the safe level and it was necessary to take a treatment break. His consultant restarted treatment after they improved but had to stop again for several weeks for the same reason. All of a sudden the symptoms of cml returned and his spleen grew big again, he felt wretched. We saw another consultant as ours was away and he restarted it again.he ended up on a break again for the same reason and before he could change TKIs he had a blood test that gave concern and he was called in for Bone marrow biopsy which confirmed he has gone into a Blast Crisis. He was rushed into the oncology centre of the nearest major hospital and is still there nearly two weeks later. He’s being treated with high dose Imatinib, anti - everything drugs and various minerals etc. They had to slightly reduce the Imatinib because his kidneys started to struggle, and they are are supporting his various systems with whatever is needed on a day to day basis. His neutrophils are getting better but we really need to have a long talk with the top dog about what’s next, as yesterday one of the junior doctors said he may be well enough to go home in the next day or two. Typically top dog is going on holiday for two weeks now!  

The hospital have done another Bone Marrow Biopsy and are awaiting its results for mutations.

We  are under no illusion regarding the position he is in and have researched how it’s not a great prognosis. We have spoken about Bone MarrowTransplant and they are tissue typing his brother. His other medical issues mean that they are very twitchy about he being a good candidate for one.

Questions

Anyone offer any advice as to things we should be asking/ doing?

Anyone know why exactly Blast Crisis has a poor survival rate at 5yrs? 

Anyone offer any ideas?

Belladoo - Very sorry to learn of your husbands situation. Blast crisis is very serious. Normal blast cells are very short lived and exist in order to differentiate into working blood cells (red, white, platelets). In CML, mutations occur which stop blast cells from differentiating and instead they divide and divide crowding out normal cells. It is uncontrolled blast cell division which kills in CML. Until blast crisis, CML is a chronic condition and very slow.

One drug which has shown effect against blast crisis is Dasatinib (Sprycel). You should ask his doctors why they are not prescribing Dasatinib. I would insist on it in order to help save his life.

Below is a link to an excellent summary of how Blast crisis can be treated. Stem cell transplant is a last resort.

http://www.bloodjournal.org/content/120/4/737?sso-checked=true

One thing his doctors will likely not mention and you can try is to increase his vitamin D blood level dramatically. Chances are his vitamin D level is very low (i.e. < 20 ng/ml). Evidence has shown that high normal vitamin D levels (~ 70 ng/ml) induce blast cells to differentiate - INCLUDING leukemic blast cells. This is key. Getting leukemic blast cells to differentiate will reduce blast crisis and potentially revert CML back to chronic phase where it is very manageable.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5303117/

I would immediately start taking vitamin D3 supplements (converts to vitamin D in the body). I take 5,000  IU's per day (with food that has fat for absorption) in summer. I take 15,000 IU's per two days in winter. When I was first tested, my vitamin D level was 17 ng/ml - and I always had blast cells. In fact, when I was diagnosed with CML, I was borderline accelerated phase with over 6% blast cells. Sprycel reduced my blast cell count somewhat to around 4% - BUT when I started to take vitamin D3, my blast cell count went to zero. ONLY after I increased my blood level of vitamin D to around 70 ng/ml did my blast count disappear. The only issue is that it takes many months to build up vitamin D blood levels. And you do not want to overdose on vitamin D. It has to be built up slowly (the way the sun does as winter advances into summer).

Your husbands doctors will never tell you about vitamin D and its impact on the immune system and blast cells. They simply don't know because they don't read and follow this kind of research (I'm being very critical here) because there are no clinical trials. Without clinical trial support a doctor can't make the recommendations above. Only you can decided what is best.

We know vitamin D is critical in the immune system. This is a fact. We know that vitamin D is necessary for normal blast cells to differentiate and evidence that leukemic blast cells also will differentiate in the presence of vitamin D. My own personal story shows that after I increased my vitamin D level and only after I increased it, my blast count went to zero and has stayed zero ever since.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3166406/

https://www.universityofcalifornia.edu/news/higher-levels-vitamin-d-corr...

Adding vitamin D now may or may not help given your husbands current condition and he may need a stem cell transplant, but adding vitamin D won't hurt and may very well help in the fight.

Something to consider.

(note: I am not a doctor and only offer my opinion and experience.)

 

 

Belladoo I am so sorry to hear this. I hope you have family and friends close by to support you both. 

I would also post on the community section of the lls.org website. Trey (and others )who posts there has great deal of experience and I would seek him out. 

Hoping the match is good with your brother in law so you have that as back up. 

My very best wishes to you and your husband ,Louise 

 

Scuba, thank you so much for your comprehensive reply. 

I am very pleased to report that hubby’s doctors must be on the ball with Vitamin D as they have got him on supplements as part of his treatment. He’s currently on Imatinib but we will ask about dasatinib on Monday.

Ive already read some of the articles you attached and am going armed with them on Monday.

thank you again, 

Bella

They are learning a tremendous amount regarding T-cells (our immune defense mechanisms) and how T-cells are very much active against cancer all of the time - except when they are not. They are finding in order for T-cells to get "activated" - T-cells  need a signal that binds them to a specific set of proteins unique to the bad cells (whether foreign (virus) or domestic (cancer)). Vitamin D, they now know, is vital to activating T-cells to do their job.

It's not perfect - but if you can prevent a cancer from ever getting started, you are 90% there.

And the irony is that cancer cells, once they get a foothold, produce enough of their own signal proteins that tell T-cells to stand down. This is part of the reason that just increasing vitamin D AFTER you get cancer doesn't work.

My personal theory is given a vitamin D deficiency - first thing is to get that corrected and not just to what experts call normal, but what recent research is showing is needed (high normal > 60 ng/ml but less than 100 ng/ml). Then with cancer treatment, cancer cell numbers are knocked back so that potentially a critical threshold is reached where the cancer can no longer produce enough protein to shut down T-cells. Vitamin D activates our T-cells while TKI's do their job. I'm hoping that once I stop Sprycel to test cessation, my own immune system, having been strengthened by vitamin D (and other things I am doing), will be sufficient to keep me in treatment free remission.

(note: vitamin D3 should be taken with vitamin K2 - they work together: https://www.healthline.com/nutrition/vitamin-d-and-vitamin-k)

 

Belladoo, I wanted to reach out and find out how your husband is doing . I have been thinking about you both and hoping you have had some better news since you last posted. 

Best wishes Louise