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Blast crisis

Hello

Since  my last post this week about why my BCR-ABL has gone up, I met my consultant yesterday and it seems I have a blast crisis.
Also the Asciminib I was taking since last April had stopped working. No new mutations.
I have started taking Ponatinib. The doctor is going to find out if I can have one round of immunotherapy, to clear my system.
I received immunotherapy last year, but it’s usually only for those with ALL it seems (I had Blinatumomab through a CAD pump).
My consultant is looking at any trials I could go on. Sounds like a sad story! I am seventy two. They said last year I was too old for a stem cell transplant.
No mention of that yesterday..not that I would really want one anyway.
I attend a major London hospital
So not really good news. We will see how we go.
Thanks to all those who replied to my last posting.

Paul

Paul, I'm really sorry to hear this. It's tough news for you.

Please do keep us updated about treatment, and how you are doing. Is the London hospital you are seen at is a specialist centre for CML?

David.

Helllo David,

Many thanks for your message. We had a call from the consultant today. Am booked into the hospital on Monday to start receiving
Immunotherapy. Will be in for a few days as they want to see if I have any adverse reactions to it. It will be the same medication I
received last year so I should be alright. I am at UCLH on Euston Road. I understand it has the largest haematology department in Europe.

I will keep you up to date at some stage.
That you
Best wishes

Paul

Best of luck rambler. Stay strong. All we can do is wake up every morning and look this devil square in the face.

Hi Joe,
Many thanks for your message. I am always positive. Though you can’t help over thinking sometimes.
We try and make sure we enjoy everyday by getting out into nature. That is parks, the countryside or
Kew Gardens where we are going to today
Thank you again

Paul

Hi Joe,
Many thanks for your message. I am always positive. Though you can’t help over thinking sometimes.
We try and make sure we enjoy everyday by getting out into nature. That is parks, the countryside or
Kew Gardens where we are going to today
Thank you again

Paul

Yes a simple stroll in the park or walk in the country side is priceless. Good luck Paul.

UCLH is a fantastic hospital. I owe them my family, really. My children (twins) were delivered very early and very sick and were not expected to survive, or at best not survive well. The care they received was exceptional, and 6 years later they are totally normal kids. I get a lump in my throat every time I drive past. So in my book, you are in good hands.

Wishing you all the very best. Best of luck for Monday - I’ll be thinking of you.

David.

Hi David,

Many thanks for writing
Yes we can’t say enough how good UCLH is. Can’t fault them at all. I’m very happy everything going well
now with your children.
I feel a bit sorry for you if you have to drive along Euston road though!

Paul

Hi David,

Many thanks for writing
Yes we can’t say enough how good UCLH is. Can’t fault them at all. I’m very happy everything going well
now with your children.
I feel a bit sorry for you if you have to drive along Euston road though!

Paul

Hi Rambler - Do you know your vitamin D blood level?

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

Blast crisis is a condition where immature leukemic white blood cells (blasts) fail to differentiate into 'daughter' blood cells and instead self replicate leading to blast crisis. Blast cells express the vitamin D receptor which facilitates blast cell (normal & leukemic) differentiation and apoptosis. Patients in blast crisis almost always are vitamin D deficient.

It is important for you to KNOW your blood vitamin D level (simple blood test). Any level below 70 ng/ml inhibits the benefits of vitamin D in managing blast crisis. Vitamin D is not a magic elixir or a cure, but can be helpful in managing blast crisis.

I was near blast crisis at diagnosis. My vitamin D level was near ricketts level (~17 ng/ml). Once I increased my blood vitamin D over 50 ng/ml my blast cells dropped significantly. And once I achieved 70-90 ng/ml, my blast cells "disappeared" (i.e. they are always present, but differentiate too fast be measured). I haven't had a detectable blast cell (of any kind) since.

Everyone should know their blood vitamin D level and supplement to increase low measurements.

Thank you for your message Scuba,
I will try and get a check for my vitamin D level. I have no idea what it is, although I have numerous other things checked by the hospital every week. I have been taking vitamin D3 2000iu daily since 2020 when the covid pandemic began. Recently started on a higher dose, D3 4000, now winter is here.
I will see what it comes out to be
Thanks again

Best wishes,

Paul

I average 7500 IU's vitamin D3 (5,000/10,000 alternating days) daily and had to increase it to 10,000 IU per day for several weeks following a recent blood test. I tested 48 ng/ml ! This was my lowest in years - and despite my high normal supplementation! I am back up into the 70's following my temporary increase.

Vitamin D gets "used up" when the body is under viral/bacterial attack and you don't know it. I was certainly around sick people in October and November! Also - I take high doses of vitamin K2. Vitamin K2 "uses" vitamin D in manufacturing the enzymes used to regulate blood calcium.

Your 4000 IU's per day are likely not enough, but your blood test will show you where you are.

Hello Scuba,
Many thanks for your message. I am following your advice. I have increased my vitamin D3, to 8000IU per day
And I am going to get some K2 today.
Still yet to get a blood test
Best wishes
Paul

Hello Scuba,
Many thanks for your message. I am following your advice. I have increased my vitamin D3, to 8000IU per day
And I am going to get some K2 today.
Still yet to get a blood test
Best wishes
Paul

Get a vitamin D blood test. You want to know your D level before supplementing too much.