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140mg Sprycel Dastinitab

Hi my hubby had been on 140mg p/d since his diagnosis. I have noticed a big decline in his quality of life. He has lost his mojo, has been in denial, has no energy, very sore bones and is do tired. His heamotolofist believes his dose cannot be reduced because he was diagnosed in late accelerated stage with 21% blast cells. Any suggestions. Apart from alkaline juices? And what about long plane flights from Australia.?. He has been suffering with gout and odeama with fluid in face especially till mid morning. His eyesight is very poor now with the option of laser not an option at the moment. Would like to hear from anyone who has been on a such high dose for years and the side effects and expectations ahead. Thx Shell

Blast crisis is what kills in CML. It is a dangerous condition that has to be treated aggressively and early.

http://www.haematologica.org/content/93/12/1765

Your hubby is borderline with evidence that blast counts above 20%, but less than 30% have a better survival outcome than patients who enter full blown blast crisis.

High dose dasatinib is one of the treatment approaches to attack cell counts aggressively. It can be toxic and lead to many other side effects (some of which you reported above), but given the choice of blast crisis, it is probably a necessary trade-off.

There are some adjuvant supplements your husband can be taking to help dasatinib do its job better and hopefully "end" blast cells present in his blood and then he can greatly reduce his dasatinib dose. But he needs to act now. Today not tomorrow.

Background:

Blast cells are normally very temporary cells leading to differentiation of higher order blood cells into final action blood cells (red blood, white blood, platelets, other cells). They are very transient which is why normal blood counts of these cells are typically not observed (zero percent in blood) or only a few percent. During CML progression, bcr-abl - the protein created by CML cells, triggers an ever expanding cascade of busted signalling that causes an increase in leukemic blast cells. These leukemic blast cells do not differentiate very well and accumulate as well as pump out additional bcr-abl. The accumulation over time keeps expanding their numbers in the bone marrow squeezing out normal cells - including even functioning leukemic white cells. Eventually there are simply too many of them for any treatment to work and death occurs.

A key treatment approach is to reduce bcr-abl in order to stop blast cell triggering. The hope is leukemic blast cells die out or even differentiate away albeit slowly. The lower the leukemic blast cell burden to begin with, the better the odds.

Adjuvant approaches:

Vitamin D -

Interestingly, scientists are learning what triggers blast cell differentiation in the first place. Vitamin D is vital for blood cell differentiation (and other cells). Bone marrow blood have extensive networks of vitamin D receptors on their cell membranes which are used to trigger cell differentiation - including leukemic cell differentiation. There is evidence that high normal levels of vitamin D can trigger blast cells to more rapidly differentiate and ultimately lead to cell death (apoptosis). People with high normal levels of circulating vitamin D (> 60 ng/ml but < 100 ng/ml) often show zero blast cell as a percentage of sampled blood. People with very low vitamin D levels (< 20 ng/ml) often show several percent of blast cells. I even suspect that when healthy people go for routine blood tests (i.e. you) - if they show any blast cells, they are probably deficient in vitamin D! You should take it too.

Supplementing with vitamin D3 (converts to D in the body) could help dasatnib do its job and help drive leukemic blast cell counts down. But he needs to supplement now. I would bet his current vitamin D level is below 20 ng/ml. I take 5,000 IU's / 10,000 IU's every day alternately in winter to maintain my D level at around 70 ng/ml. ONCE I did this, my blast cell percentage - which was 11% at diagnosis and fell to around 3-5% during initial treatment - then fell to zero after adding vitamin D. It's been zero ever since. I am a believer in the power of vitamin D to impact blast cells. (note: I also take vitamin K2 with D3 as they work together).

Your husband needs a vitamin D blood test right away and if his blood level is very low, he would need to elevate his D rapidly. My original D level was 17 ng/ml. I took 10,000 IU's every day for 3 weeks to get my blood level raised. But once raised - less D is needed for maintenance. Vitamin D needs to be monitored when taking high doses (twice a year).

Also - there is evidence that low vitamin D can trigger depression or as you put it - no "mojo".

https://www.healthline.com/health/depression-and-vitamin-d

Selenium -

There is emerging evidence that high normal blood selenium levels can stimulate leukemic cell apoptosis.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4102641/

Doses around 200 mcg (typically one capsule) have shown to inhibit leukemia. Brazil nuts are an outstanding source of natural selenium. I alternate between 4 Brazil nuts per day OR take a supplement. I do not take both together as Selenium can be toxic in too high a dose. Read up on selenium dosing and leukemia. It may actually be possible high selenium along with a TKI (i.e. dasatnib) can eradicate leukemic stem cells! How nice that would be.

Summary:

Your hubby needs to elevate his vitamin D level, take selenium and it is possible his blast count level will drop significantly. He should consider adding a high quality vitamin D supplement (right now at 5,000 IU's per day with food that has fat as vitamin D is fat soluble) and get his D tested so you know his baseline. Also - take vitamin K2 (MK-7 variety) along with vitamin D3. The two vitamins work together and balance each other. It's hard to overdose on D when K2 is around. And for you, the combination of K2 and D3 can mitigate any osteoporosis.

I hope this helps.

 

Thank you so much for your detailed response. We will be sure to start your suggestions immediately. We understand he needs such a high dose but it seems he seems to be ageing rapidly since but I suppose it's a small price to pay for life.

Thank you so much for your detailed response. We will be sure to start your suggestions immediately. We understand he needs such a high dose but it seems he seems to be ageing rapidly since but I suppose it's a small price to pay for life.

One more question. He has been on 140mg sprycel now for nearly 5 years. I'm assuming he has no blast cells. According to his numbers his heamotolofist said he will Never get to full complete remission.

Shelly,

I did not fully appreciate that he has been on Sprycel for 5 years at 140 mg and that his blast cell count is no longer an issue.

What is his blast cell count currently? If it is low -then the fact he was diagnosed borderline blast crisis is irrelevant to what his situation is now. I was diagnosed borderline accelerated and now I only take 20 mg sprycel every other day and I am "undetected".

Assuming your husband's blast cell count is "normal", he most certainly should not be taking 140 mg ! What is his PCR? What is his current situation today - 5 years ago is ancient history.

Apologies for not being clearer. Yes he last bcr abl 10 July 2019 0.035 3 mths prior 10 may 2019 0.031. He just seems to be deteriorating. Rapidly...tired. No energy sore bones and body. I can send a copy of his results. Can't seem to attach to this thread. Regards
Shelly.

Apologies for not being clearer. Yes he last bcr abl 10 July 2019 0.035 3 mths prior 10 may 2019 0.031. He just seems to be deteriorating. Rapidly...tired. No energy sore bones and body. I can send a copy of his results. Can't seem to attach to this thread. Regards
Shelly.

I assume he no longer has significant blasts - and that a potential blast crisis is long past.

At 0.04 he is in major molecular remission. His current dose of sprycel is TOO HIGH. Work with his doctor to lower his dose to 70 mg and then to 40 mg. There is even a good chance his PCR will fall further with a lower dose. It sounds counter-intuitive, but high dose sprycel, although necessary in his case early, also suppresses normal blood defenses against CML. He needs to find out which sprycel dose is perfect for him. He can always go back up if his current response increases. I strongly doubt that it will.

Also - getting started with vitamin D, K2 and selenium will go a long way to elevating his mood and helping him to feel better. Again, without data, I am assuming his vitamin D level is very low. He needs to have a vitamin D blood test to know his current baseline.

Much appreciate your advice. Will work on that asap with Drs. Good luck to you. How are your side effects on 20mg every second day?

Much appreciate your advice. Will work on that asap with Drs. Good luck to you. How are your side effects on 20mg every second day?

I have no side effects which I can feel.

Scuba, I am new to this site and have been reading your response to this thread as I have only recently diagnosed with Accelerated CML in Sept 2019.  Currently, I am on 140mg Dasatinib and my BCR-ABL1 test has gone from 110(Sept 2019) to 0.12(Dec 2019).  Just had my latest blood test this week and will get the BCR-ABL1 result next Tuesday and hopefully it is indicative of MMR.  I wish to know from this community, what is the survival rate of patients with Accelerated Phase CML as I read some online materials that for this advanced phase there is a very high chance of re-ignition within 2 years even with Dasatinib and a second TKI drug is needed with the possibility of the need of stem cell transplant.  I hope that some of this content online are outdated. I am reading from this site that patients like yourself have prolong life continuing administering Dasatinib.  Wish to know your experience more as I will be making some decision whether to go back to work next month or the precautions I need to take. 

I understand you want to know what is the survival rate of patients with <sic> accelerate phase CML. A way to think of this is what is the survival rate of accelerated phase patients - once - they achieve chronic phase and reduced bcr-abl burden. The answer to that question is no difference. In other words, if an acclerated phase patient achieves reduction in blast cells and achieves CCyR (complete cytogenic remission), their ongoing survival rate is no different than other CCyR patients - well over 95% (and the remaining 5% died for other reasons!).

Given your successful response, "danger" of blast crisis for you has very likely been avoided.

Once CCyR has been achieved, liklihood of "re-ignition" is remote. It's never zero, but it's probably lower than getting hit by a car or struck by lightning.

You likely beat the disease and need to think more about ongoing management for side effects and other quality of life issues. For one thing - you should consider a lower dasatinib dose as 140 mg is quite high....necessary for accelerated phase, perhaps, but nor for someone near MMR.

Maker sure your blood vitamin D level is above 50 ng/ml (preferably above 60 ng/ml) and that you also add selenium and vitamin k2 to your diet.

 

 

Thanks and Appreciate much for your answer and will definitely be looking at my management for side effects and QOL issues.  Will discuss with my hematologist on my dosage and also check my blood vitamin D level.  Thanks!!!!

My latest reading today is 0.013% for my bcr-abl.  Will perform my CCyR test in March. This has been my 4 months plus journey with Dasatinib

0.01-ish% is basically MR4, so it would be highly unlikely you haven’t achieved CCyR which is usually associated with a PCR of about 1%, give or take.

David.