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Pleural Effusion Again ! Should we change from Dasatinib to Imatinib and BCR-ABL redecteded


Hi All,

My wife is on 50 MG Dasatinib and has got again Pleural Effusion in a span of 4-5 months since Pleural effusion first came into being. While it is evident Dasatinib is showing its side effects we want to know if it will be OK to shift to imatinib. If yes, in what dose.

She was first diagnosed in December 2020 and was on 100 MG Dasatinib till in June /July 2021 when she first got rashes.

We were consulting 2 Haematologists till that point, and we were suggested to be on steroids for a while. After a while, in September 2021 the rashes appeared again. This time they were intense. One of the haematologists recommended we change the drug to imatinib. As we had achieved the undetected status in July 2021, we were a little reluctant to change the drug despite her body/face swelling up due to edema.

We also had read posts of Scuba and others on how 50 mg was working fine for them, and we were able to convince one of the doctors to try a lower dose. Since October 2021 we were on Dasatinib and were able to maintain the undetected status.

In October 2022, Pleural Effusion was first detected, and each lung had a litre of water in it. The doctor advised us to be on off drug. We took some steroids, diuretics and were able to address the pleural effusion in 20 - 25 days.

Considering we had a fair result from Dasatinib 50 mg for a over a year and we were off drug to address Pleural Effusion we asked doctor if we could extend being off drug for some more time as we wanted to store embryos.

As we are almost 37 with no kids , we knew the chances were getting less for us hence we took a chance to extend being off drug and undergo IVF process to store embryos for later. The process lasted for 30-35 days but it wasn’t successful. Before starting this IVF process to only store embroy, we had tested undetected in the BCR ABL Test. In January, after being off medication for 2 months , we started the 50 mg dosage again in January 2023 and after in March 2023 ie 2 months on being on medicine we redeveloped Pleural effusion. This time it was only in one lung at 500 ml approx. Again, we have been asked to be on steroids and diuretics till this goes away.

Meanwhile in end of March 2023 we also retested for BCR ABL and this time we were diagnosed :(
BCR-ABL1/ABL1 % Ratio - 0.0060
Conversion Factor for IS - 0.703
BCR-ABL1/ABL1 (IS % Ratio) - 0.0042%

In our previous meeting with our doctor, he suggested we change the drug to either Imatinib or Nilotinib. Also, doctor said that since the CML has come back in a short span of time it it unlikely we can ever go on TFR.

We are confused now on what to do next. Which drug to choose. A little disheartened with the CML resurfacing and anxious if being off drug for a while and undergoing IVF to store embryos for later has spiked CML %

Should we continue to be on Dasatinib and monitor pleural effusion since the drug has worked well for us OR should be change the drug once the pleaural effusion settles.

Hence seeking guidance.

Scuba, David, Alex – Seek your inputs.


Hi there

Sorry to hear about the ongoing problem with pleural effusions. I'm nowhere near as knowledgeable as others on this site, but just wanted to give you my two cents' worth as someone who shifted from dasatinib to imatinib:

First, it's clear that your response to dasatinib is excellent with your very low level of 0.0042% (It took me more than 6 years to reach that level). I believe that there can be an association between good drug response and bad side effects as both are determined by your sensitivity to the drug. Have you discussed 20mg? I know that there are several people on this very low dose and it works brilliantly for them, but I guess the pleural effusions may still be a problem given your high sensitivity.

Second, I'm not sure that I agree that "the CML has come back in a short space of time" and that TFR is going to be unattainable. The difference between undetectable and 0.0042% is 42 cells in a million (assuming that your lab where you are is sensitive to MR5). As others on the site will hopefully confirm, doctors only consider TFR attempts to have failed if you lose MMR. In my own case, I tested undetectable only once but was forced to stop all treatment because of bad side effects - the count rose immediately to 0.003% after one month and then to 0.0042% a month later - but it has stopped there for now and dropped back to 0.003%. Yesterday I received my latest result and it is still 0.003% after 8 months. It may be possible to live with very low levels of BCR-Abl for a long time!

Third, it's definitely possible to shift "backwards" from a second generation TKI to a first generation one. I did it when, after a few years on dasatinib, I developed lymph node swelling that got progressively worse, and I was switched from dasatinib 100mg to imatinib 400mg. For some reason, doctors don't seem to be that keen to lower the dose of imatinib. Not sure why - but I read somewhere that dasatinib is over 350 times more potent than imatinib, and the safety / toxicity profile of imatinib is quite low. Imatinib and nilotinib work in a different way to dasatinib as they bind to a different area of the BCR-Abl gene, so it may well be that either one of these will be effective at getting you back to undetected without the hassle of the pleural effusions.

Lastly, my doctor is planning to start me on asciminib if my TFR attempt fails. This one works differently too and I don't even think it's a TKI - from what I understand it inhibits a different kind of protein. Maybe this would be an option?

Just some thoughts that hopefully make sense! Best of luck with these decisions and keep us updated.


Thank you so much for your note Martin.

Your experience is really helpful. I will keep you posted on what the doctor says when we meet him next in 2 weeks from now.

Wish you all the best

Scuba, David, Alex – Awaiting your inputs please

I would give dasatinib one more try before abandoning the drug for imatinib. But only if your doctor agrees with the following:

VERY LOW DOSE (see below). Once the pleural effusion resolves, track bcr-abl status and avoid taking nay TKI until bcr-abl shows a trend upward greater than 0.01%. Until that happens, she may be able to manage the disease naturally and not need a TKI. Of course making sure her immune system is strong is paramount (vitamin D, C, K2, selenium & curcumin). It's possible (50-50) that bcr-abl will stay low and may even disappear. It's a long shot, but worth a try. If bcr-abl returns (trends upward), start the low dose protocol and track. In my case, once I restarted on a lower dose (20 mg), my bcr-abl went undetected.

restart dasatinib (once pleural effusion is gone) at 20 mg EVERY OTHER DAY. This is key. Dasatinib is a potent drug. And the irony is that in people who develop pleural effusions, dasatinib is more effective in destroying bcr-abl. Your wife is likely to be exquisitely sensitive to dasatinib (low dose) in a good way regarding CML, but not so good regarding pleural effusion. I would consider trying a very low dose and see if this keeps CML at bay or even drive it back to "undetected" and avoid a return of pleural effusion. As long as bcr-abl is in chronic phase (blast cells < a few percent, ideally zero), this is a viable approach.

Given that your wife is already very low bcr-abl (already below the sensitivity of the test), she has time to experiment with low dose.

In my own case, I did the above dosing strategy for a few years (20 mg every other day) before stopping completely.

It boggles my mind why doctors start patients at 100 mg first. It's too high a dose given what we know now.
Let us know how it goes and what you both decide.

*(I know several female patients who did the above and even stopped altogether in order to have a baby (twins!). Her bcr-abl did come back and rise during the pregnancy, but blasts stayed zero (vitamin D is key here) and after birth and breast feeding, she resumed therapy, but on a very low dose. Her bcr-abl cratered and disappeared.)

** Dasatinib is a threshold drug, meaning that when sufficient dose is reached it works just as well or even better than a higher dose. More drug is not better and is certainly more toxic. What that threshold dose should be is unique to each patient. Finding that dose level is what doctors should be doing. One size dose does not work for all. In pleural effusion prone patients, we already know dasatinib is very effective at destroying bcr-abl at low dose and that lower dose is as effective for them as a higher dose for a different patient. Imatinib, however, is NOT a threshold drug. Imatinib effectiveness is dose dependent. More drug yields better response - up to toxicity. This is why 400 mg is a starting dose and lower dose is usually less effective, sometimes greatly so. Many patients require 600 mg or even 800 mg (which is close to toxicity upper limit) in order to manage bcr-abl.

Thanks, Scuba.

Like always your replies are guiding and very helpful.

Even we would like to continue on Dasatinib but in India convincing doctors for a lower dose is highly unlikely. So far we have consulted 4 doctors till date and none in last 2.5 years agreed for a lower dose than 100 mg. Only one doctor was somhow ok to try a 50 mg and with the plearal effusion happening again he was keen to make a move to imatinib or nilotinib.

Considering nilotinib has to be taken under a strict lifestyle and has some heart implications we were left with the choice of Imatinib only.

We are still having the 50 mg dose and the diuretics and steroids to bring the pleural effusion down and have a consultation in 2 weeks. I will keep you posted on what we got to chose.

Thanks much, Scuba.

Take care !

Your doctors are out of date with current practice regarding dasatinib. Show them these papers linked below:

It is very important your doctors do no harm. 100 mg is too much drug for anyone with pleural effusion.
Patients who exhibit pleural effusion in response to dasatinib are actually more likely (strong statistical correlation) to have very deep molecular response to dasatinib including eradication of CML vs patients who do not develop pleural effusion.

This is a very powerful reason to stay on dasatinib.

What is needed is dose management and "intelligence" on the part of doctors. It's called thinking. We're all different, but do fall into several groups medically where one size approach does not apply to everyone. People who exhibit pleural effusion AND have low residual TKI (your wife's case), can very well benefit from 20 mg dasatinib (once pleural effusion resolves) even every other day and experience as a result an EVEN BETTER CML response! It happened with me. The biochemistry is too compelling to ignore by doctors who are ignorant. Find a doctor who follows the research and is willing to learn.

I hope the references above help you in your decisions.

(Your doctors should understand there is NO practical risk in trying a low dose protocol. If it doesn't work, your wife has plenty of time to switch drugs. But I would wager it does work)

Hi Scuba,

Our doctor isnt keen to try 20 mg. When the PE was detected the second time we were told not to discontinue the TKI but take steroids to get rid of PE. After a while, from the ultrasound it became evident that PE was not going as we were still taking 50 mg dasatinib.

Then we stopped dasatanib and continued the steroid to get rid of PE. Its almost 2 months now that we are still on sterioids and have still 20 ml of fluid left.

The first time the fluid was more but we stopped the TKI and started with Sterioids and PE resolved faster. This time it has taken over 2 months.

We were told by the doctor to be ready for change ( from 50 mg dasatinib to 400 mg imatinib) as we were not keen for other TKI's.

We are meeting the doctor today and will keep you posted if our last try to come on 20 mg is suceessful or not as without doctor prescription we wont be able to get the TKI.

The other reason our dcotor is alarming us is that too much of tweaking with medicine may create issues with drug response and can impact bone marrow which is kinda scary to hear.


Consider adding NAC to Dasatinib. I’ve been taking 2g daily (NAC in the morning, Dasatinib in the evening) and haven’t experienced any side effects from NAC.

Based on radical scavenging property, N-acetylcysteine (NAC) was effective in preventing increased pulmonary endothelial permeability which is one of the underlying causes of PE.

Our doctor has simply given up on dasatinib. He asked to chose between Imatinib and Dasatinib and considering it is once a day drug we chose Imatinib. Lets see how this goes

I would have insisted on 20 mg Dasatinib not moved to Imatinib ,your side effects will be worse such as extreme fatigue and hooded eyes .It’s your body don’t be bullied,some of these doctors don’t really have a clue or are in a real hurry to reach MMR .Good luck .

I so agree with you. But the sad part it these drugs are only available upon doctor prescrpition. Lets see how it goes. If there would be more side effects then we would request to shift a 20 mg. Hopefully he agrees then.

Thank you , Felix.

Within a week on changing the medicine from 50 mg Dasatinib to 400 mg imatinib due to pleural effusion my wife is experiencing skin rashes.

It was in July 2021 when on 6 months of 100 mg she got similar rashes and were very painful and scary. The only difference as of now is that there is no itching.

Dec 20 - BCR ABL 49% detected, Dasatnib 100 mg

July 21 - Undetected , due to skin rashes shifted to 50 mg

till Oct 22 - remained undetected, medication stopped for pleaural effusion

Jan 23 - Continue dasatinib 50 mg

Mar 23 - BCR-ABL1/ABL1 % Ratio - 0.0060

mid Apil 23 - Second incident of pleaural effusion , dasatinib stopped

10 June 23 - doctor changed medication from dasatinib 50 to imatinib 400 as doctor dint agree for 20 mg.

Is these skin rashes normal or can it get worse as it was on dasatinib 100 mg

TOO CONFUSED what to do.

Scuba , Alex , Felix , John - Look for your guidance

Hi, the rash was really awful for me on Imatinib had it on my face and top of torso it was so itchy and burning used a vitamin E cream to help but it didn’t do much ,that is another reason for changing to Dasatinib ,I have non of the side effects of Imatinib they were truly awful .I don’t like the sound of your doctor ,can you change ,I took all the decisions of my treatment and my Doc just had to follow what I wanted to try .I am on 10 mg now of Dasatinib if she had her way I would be on 100 mg and half dead ,she never once suggested a decrease in meds ,I just told her what I had done
when I felt was the right time for me .

The irony is that we won’t be able to get medication without his prescription and he won’t buzz of his old theory.

She also started the skin rashes from her torso and now has it on legs hands and back too.

I think 400 mg too is a much dose for her but I don’t know if 200 mg can be prescribed.

Hi, if you want to try 200 mg of a Imatinib or 20 mg of Dasatinib and your doctor doesn’t agree then you just buy a pill splitter and take the dose you want .You don’t have to tell them ,just wait and see how your bloods respond .Like I said it’s your body ,you are the one who has to cope with the side effects ,and some are unbearable and ruin your life .Good luck I hope you get sorted soon .See if you can get a better doctor that is more up to date with treatment .

Your wife's case is an example of someone who is "perfect" for dasatinib if only there was no pleural effusion.
What I mean by that is she is very sensitive to the drug which is why it worked so well. 50 mg dsatainib is way too high a dose. She doesn't need it. It's too toxic.
(I was never on 50 mg. only 20 mg and then 10 mg because I was sensitive to the drug as well, myelosuppression & rashes. I would have developed pleural effusion, no doubt, but was never on a high enough dose long enough to trigger it.).

Given that she is below the precision and accuracy of the PCR test (i.e. bcr-abl < 0.01%) which is indistinguishable from "undetected" statistically, she can easily go on a on and off again therapy in order to manage pleural effusion and still likely maintain excellent response. I have a suspicion, however, that if her dose were lowered to 20 mg daily, pleural effusion may not re-appear, but if it does, stop therapy until it resolves. At bcr-abl < 0.01%, she is not in any danger of progression. Let me repeat that, at PCR < 0.01%, in fact at PCR < 0.1% (an order of magnitude higher), she is not in any danger of progression. I assume you also take vitamin D, selenium and curcumin? - especially vitamin D to help strengthen you immune system (good for both of you).

Changing drugs is always an option, but given her current status (i.e. borderline "undetected"), I would be concerned about full dose any drug.

(Consider 20 mg every other day. This was prescribed to me by by one of the authors in the papers cited below, but it is not standard protocol. Cutting edge research never is) (switcing to Imatinib was not as effective as staying on dasatinib)

Thanks, Scuba. While I write thanks to you everytime on your detailed answer you give , I so feel my Thanks as a understatement to your mammoth efforts to help us all. THANK YOU FOR ALL THAT YOU DO FOR US.

We had to pause imatinib 400 mg as my wife developed skin rash on it within 8 days. By today the skin rash seems to be getting better as it is day 3 on not being on any TKI.

I tried to convince the doctor last time for a 20 mg dose but he was unmoved and asked us to revisit again on Friday once rash would have got better.

I took my laptop along to show him what all recommendations were and while he was not convinced I will try again for him to try for 20 mg atleast for a month.

In case he doesnt get convinced we are thinking of going back to dasatinib 50 and break the pill by ourself to 25 mg. We wont be able to get 20 mg without a prescription.

Dr. Jorge Cortes, one of the top researchers in Leukemia is a specialist in CML and is involved in most of the trials for various drugs including dasatinib back in the day.
He prescribed for me 20 mg dasatinib as first line therapy. You might mention this to your doctor.
When I achieved PCR < 0.01%, however, I cut my 20 mg dose in half on my own to 10 mg (more or less) and then I just took 20 every other day. Over a few months my CML went undetected. After 3 years, I stopped therapy altogether. I have been off dasatinib for an additional 3+ years.

Dasatinib is a threshold drug - once a patient is taking sufficient dose, it works at a maximum level. More is not better with dasatinib because of its toxicity profile and half-life (5 hours). More actually impairs the immune system from assisting dasatinib do its job. Each patient needs to discover what that optimum dose is and it is almost certainly not 100 mg (clinical trial dose for adverse events & efficacy). The new standard is becoming 50 mg starting dose. Eventually it will likely be the protocol. Some people need more dose, some less.

We do know that certain groups of patients are 'exquisitely' sensitive and responsive to dasatinib who also suffer myelosuppression, rashes, and pleural effusions. They are the most likely to respond very well to dasatinib. This is why (my doctor) wanted to keep me on it even though I suffered SEVERE myelosuppression. And why he wrote papers on helping patients stay on dasatinib even though they had pleural effusions. The key is dose management. He would rather me go on and off the drug to manage side effects than switch drugs. He said my response to dasatinib was just too good to pass up. Not all patients are in this category, but worth finding out.


Thanks for being the consistent guide and all that you do and go above and beyond for helping us.

FINALLY we were able convince the doctor for a 20 mg dose. While he did write it for us he said that pleural effusion may still come again and this low dose isnt given before in India.

So, we convinced him that we will get the BCR ABL done every 4 weeks and even got one done today since we were off medicine for over a month and half and only started last week on imatinib for 8 days before the rashes came.

We also got the XRAY done which was clean. In the last ultrasound we had there were some traces of pleaural effusion but we couldnt get the appointment for ultrasound today.

We will start the medication day after as we are still to get the medicine since 20 mg is not manufactured by our current pharma company. Hope this 20 mg suits us well.

We have also started a multi vitamin supplment which has the below composition

elemental magencium - 167 mg,
sunflower oil 100 mg
evening primerose oil 100 mg
vit c 60 mg ,
nicotinamide 36 mg
elemental zinc and iron - 12mg each ,
vit B6 , Vit E - 6 mg each,
vit B2 - 5 mg
elemental manganese - 2.5 mg
elemental copper 1500 mcg
elemental selenium - 100 mcg
Vit D3 - 25 mcg
Vit B12 - 15mcg

Our last Vit D and B12 test came is range.

Please guide if you see anything missing here. What is the way out for coping with the feeling of low energy.

Thanks Scuba. Thank you so much. We can never thank you enough.

Scuba - Does this plan looks fine?


Hi, a multivitamin doesn’t really contain enough of anything, and some of those you don’t need ,you are better off buying individual supplements to get higher amounts .It is expensive tho .Try and look back over previous posts regarding vitamin supplements .Iam sure Scuba will get back to you soon with what he recommends,I certainly take everything he’s says ,I rattle .Denise.

I do not take a multivitamin for the reasons Felix (Denise) cites. Most of the amounts are not sufficient for efficacy and do not occur in nature in this form.

It is best to take specific supplements for which a deficiency exists and where food does not contain enough. These include vitamins and minerals our ancestors were able to "eat" in abundance and modern farming has reduced greatly. What I take includes:

magnesium (need 400 mg per day - minimum)*selenium (200 mcg per day)
vitamin C (500 mg minimum, ideally twice a day)
*Vitamin D as D3 (between 125 - 250 mcg per day UNLESS I am in the summer sun in the Bahamas at noon scuba diving)
Curcumin (2 grams per day MINIMUM if MMR, ideally 4- 8 grams if not)
vitamin K2 (200 mcg per day minimum, ideally 400 mcg per day OR eat fermented foods such as Natto)
Zinc (15 mg) - except when eating oysters.
Omega-3 (as fish oil high in EPA)

*Blood test is recommended to know base line blood levels. Important to stay in the range 60 - 100 ng/ml)

The above list, from my research, are critical to a healthy immune system and facilitates natural anti-cancer fighting properties as well as anti-viral. In addition, therapeutic dosing (much higher than the minimum requirements usually listed) works synergistically with our TKI's, but vitamins should not be taken at the same time as a TKI (minerals are o.k. to take at the same time (e.g. magnesium)). I have been on the above protocol for more than 10 years and while taking dasatinib. When I am fasting for multiple days, I still take the above list (although D & K2 are not likely as well absorbed).

I also take on occasion biotin (I was deficient), quercetin (anti-histamine and a strong anti-oxidant), resveratrol, B-complex when I am not eating meat and B12.

Vitamin D & K2 are fat soluble requiring fat for absorption (avocado, cheese). Vitamin C is water soluble and should not be taken at the same time as D & K2.

Other vitamins & minerals (especially calcium) is easily obtained from food (fruits & veggies). If you don't eat fruit much (as in Keto), then adding a potassium supplement makes sense. I take potassium when doing Keto.

Thanks, Scuba for the details. Will follow this.

Thank You

Hi Scuba, Felix,

While the doctos had recommended us 20 mg our latest blood count shows 250 copies of bcr abl which is .05%. While we have started the 20 mg 2 days back our doctos seems concerned and wants us to shif to Nilotinib.

We had paused the medication for almost 2 months and then shifted to imatinib for 8 days when rashes appeared. We then started 20 mg after a 5 days break and requested the doctor for a bcr abl test which says .05%.

We are confused. Can this on /off /on on medication impact bone marrow or decrease response to the medicine. Doctor says it can have adverse effects too.

Please guide what to do..


Hi, gosh this doctor is in a terrible hurry .Don’t give up on Dasatinib yet it hasn’t had time to work .Your poor wife’s body is confused with all this changing of meds .Stay your ground and give it time .Iam sure it will work for her .Hang on in there .

Thanks, Felix. We will stay on our ground..

Thank you so much.

Felix is spot on!
Stay at 20 mg. You need 3 months for it to work (or not) and then have the bcr-abl test.
At 0.05%, she is in MMR which is a very very - very - low residual disease level. As long as she is below 0.1%, she has room to test.

Thanks, Scuba. You words echo assurance in need.

We will stick to 20 mg. We have a bcr abl in another 28 days as well. Will keep you posted.

One more question - Is there an impact on bone marrow if we play pause the drungs. Something doctor quoted that drug may even stop responding to disease.

Thanks again, Scuba.

When a doctor suggests stopping cancer treatment may lead to "resistance" they often are confusing a bacterial infection vs cancer.

Cancer and bacterial infections are fundamentally different, and the analogy of treatment resistance does not hold true in the same way for both. Cancer is a complex group of diseases characterized by the uncontrolled growth and spread of abnormal cells in the body, whereas bacterial infections result from the invasion and multiplication of bacteria within the body.

In the case of bacterial infections, some bacteria can mutate and develop resistance to specific antibiotics through mechanisms such as genetic mutations or acquiring resistance genes from other bacteria. This can make certain antibiotics ineffective in treating the infection, and alternative antibiotics or treatment strategies may be required.

On the other hand, cancer cells can also undergo genetic changes, leading to the development of resistance to certain cancer treatments. This is often referred to as acquired resistance. However, the mechanisms of resistance in cancer are diverse and complex, and they typically involve multiple genetic alterations and cellular pathways. Cancer cells do not develop resistance in the same way as bacteria, where they acquire mutations in response to the treatment.

In cancer treatment, the concept of resistance is often related to the ability of cancer cells to adapt and survive despite treatment interventions. This can happen through various mechanisms such as alterations in drug targets, activation of alternative signaling pathways, or changes in the tumor microenvironment. When cancer treatment is halted or interrupted, it is not due to the fear of cancer cells developing resistance during the break, but rather for other reasons such as allowing the body to recover from treatment side effects or to assess treatment response.

Resuming cancer treatment after a break does not typically lead to the same kind of resistance development seen in bacterial infections. Instead, stopping and resuming treatment is a tested way to manage adverse events (pleural effusion, etc.) while maintaining killing pressure on the cancer cells.

Thanks, Scuba.

This is really helpful.


With Dasatinib being taken in the morning how to do you recommend taking magnecium, curcumin and other supplements in the day. Please guide on that as well.

Also, in India we do take turmuric as a part of our diet and the maximum curcumin tablent in mg we can get is 1000 mg. Since you recommend 2 gms at least guide us how much gap should we give between the two. Can other supplements be taken along curcumin.


I took dasatinib at night before sleep in order to avoid "feeling" any side effects that might happen and to avoid any "food" interaction that may or may not happen.
I also took dasatinib with 200 mg magnesium (as taurate). Dasatinib is complexed with magnesium during drug manufacture. Magnesium and dasatinib are fine together. Everything else I tend to take in the morning, which is many hours after dasatinib has done its job. This is why I have no concern about grapefruit or any other drug - supplements interaction.

Curcumin I always take in the morning. Mostly now because it is a strong anti-arthritis compound which works great I take two grams along with another 200 mg magnesium, vitamin C. When I eat a meal (usually just once a day unless out socially), I take everything else. It's such a habit now, I don't even think about it.

Scuba, we are taking elemental magnesium (167 mg) trhough our supplements at a gap of 12 hours from dasatinib. But it only mentions elemental magnesium and no further mention of oxide/citrate etc.

Can we take magnesium in any form at a 12 hr gap to be on safer side as we read magnesium oxide may reduce drug absorption.


I would assume the magnesium you are taking is the "oxide" version. It is very common, easy to produce (inexpensive) and not beneficial for our purposes at 167 mg. Separating drug/ supplements by 12 hours assures no interaction. After two hours, the interaction would be near zero anyway.

I take 400 mg of Magnesium taurate per day separated in two doses of 200 mg each (morning and evening). When I was taking dasatinib before my cessation trial (which is still ongoing), I would take my 200 mg evening at the same time as dasatinib. Magnesium taurate absorbs easily along with the dasatinib. Keep in mind, dasatinib (many drugs, in fact) is complexed and manufactured with magnesium stearate as an excipient.

I personally avoid magnesium oxide. It's only benefit (my opinion) is to speed things through the digestive tract - because it doesn't absorb well. Perfect for a colonoscopy!

Thanks, Scuba.

We will look for the one you recommend. We are able to get Magnesium Citrate but will try for Taurate. In case we dont get Taurate , is Magnesium Citrate recommeded?

Another question we have is that the curcumin we are taking is a 1500 mg tablet and only 500mg is curcumin while 1000 mg is turmuric. Should we start with one and then make it 2. But is still will reamain half to the one that you recommend.

We are taking 20 mg dasatinib daily in the morning 60 mins before the breakfast and curcumin ( 1500 mg out of which only 500 mg is curcumin). Since we had pleural effusion we are also taking nac to avoid pleural effusion.

What other precautions we can take to mitigate pleaural effusion.


Magnesium citrate is fine.

Curcumin's benefits is dose dependent. The more you take (up to about 8 grams per day), the greater the positive impact. Any dose less than a couple of grams per day is probably not worth the cost. The issue with Curcumin is its bioavailability. Pepper helps curcumin absorption, but to get therapeutic levels in the blood, more curcumin in the gram weight amounts is needed.

In addition, turmeric (usually a powder) is only a few percent curcumin. Taking turmeric supplements does not provide any meaningful levels of curcumin. However, turmeric, as a spice, has other beneficial properties when taken with food such as anti-oxidant properties. I use turmeric regularly, but as a food, nothing more.

Below is a link to a nice summary of Curcumin's benefits in clinical trial settings.

I take 2 grams per day Curcumin C3 complex mostly for osteoarthritis (which I no longer feel or have since taking Curcumin!). If for any reason, my CML were to re-appear (currently undetected), I would increase my dose back up to 4, 6 or 8 grams per day straight away. (or any other cancer). The only reason I only take 2 grams per day instead of six or eight grams per day is cost. Curcumin is expensive.

Scuba, Felix, David - NEED HELP

Our latest BCR ABL report is out and it shows an increase in BCR-ABL1/ABL1 (IS % Ratio) from .05% last time to 0.1242% in 35 days while we were on 20 mg dasatinib

Confused now if we should switch the drug. Please advise.

Observed Copies of ABL1 : 37,254.957
2. Observed Copies of BCR ABL1 : 65.833
3. BCR-ABL1/ABL1 % Ratio : 0.1767
4. Conversion Factor for IS : 0.703
5. BCR-ABL1/ABL1 (IS % Ratio) : 0.1242%

In June the report was

1. Observed Copies of ABL1 : 336,514.969
2. Observed Copies of BCR ABL1 : 269.527
3. BCR-ABL1/ABL1 % Ratio : 0.08009
4. Conversion Factor for IS : 0.703
5. BCR-ABL1/ABL1 (IS % Ratio) : 0.05630%

In April the report was

Observed Copies of ABL1 6,53,352.63
Observed Copies of BCR ABL1  39.361
BCR-ABL1/ABL1 % Ratio 0.006
Conversion Factor for IS 0.703
BCR-ABL1/ABL1 (IS % Ratio) 0.0042%


What is her doctor recommending?

The trend is up significantly indicating a possible clone breakout not susceptible to low dose dasatinib treatment. Switching to a different drug makes sense.
Given that she had pleural effusion, increasing dasatinib dose is not an option even if a higher dasatinib dose could work.

I would have a mutation test to learn what's changed in the bone marrow. This will guide a doctor as to what alternative TKI is recommended.

Does she have any blast cells? (blast cell count/percentage)? If no blast cells, she has time for this to get sorted out.

TKI alternatives when dasatinib not working:

Nilotinib (Tasigna): Nilotinib is another TKI used to treat CML. It has shown efficacy in patients who have not responded to or have become resistant to imatinib or dasatinib.

Bosutinib (Bosulif): Bosutinib is approved for the treatment of CML in patients who are resistant or intolerant to prior TKI therapy, including imatinib and dasatinib.

Ponatinib (Iclusig): Ponatinib is used to treat CML and Philadelphia chromosome-positive acute lymphoblastic leukemia (Ph+ ALL) in patients who have failed other TKIs or have the T315I mutation, which confers resistance to other TKIs.

Scuba, we are meeting the doctor tomorrow. There is no mention of blast cells in the report so i assume there are none.

We will discuss the report with the doctor. Our doctor was recommending Nilotinib last time instead of low dose dasatinib but we wanted to take your inputs for our discussion. He may also recommend to conitnue 50 mg Dasatinib as he knows our cousin who is pulmonologist is the same hospital.

Do you advise to try 40 mg dasatinib ? What is the long term side effect of recurring pleural effusions.

One doubt I have is that its been 2.5 years including 3/4 breaks on dasatinib ( 100 mg to start with for 6 months ) and then 50 mg for 1.5 years. Is it early for us to try a reduced dose of TKI's. Do you think we should try Nilotonib on full dose or a reduced dose?

With dasatinib possibly goin out as the option and side effects of imatinib within one week and now 20 mg dasatinib not working we are feeling anxious as we wanted to have some medcations in reserve for the long run.

Thanks for all your guidance, Scuba.

Low dose dasatinib was worth a try - and given no blast cells means she has time to try other TKI's.
Increasing dasatinib dose increases the risk of pleural effusion and low dose has already failed to keep CML in check.

Her doctor is likely to recommend a new drug at full dose. And that's fine in order to reverse the CML trend. Once she is undetected, a dose reduction is worth trying again. Of course new drug side effects will have to be closely monitored.

(Trying 40 mg dasatinib is up to you of course, just watch for pleural effusion closely and monitor bcr-abl 30 days later if you want to go that route.)

Thanks, Scuba.

Yes, we are making our minds up for Nilotonib now.

What is the appropriate time to try a dose reduction with a new drug. With 2.5 years in CML and with some pauses in between do you think we might were slight early to try dose reduction to 20 mg?

What according to you is the right time to try dose reduction ( based on your own journey)


In my own case, I went straight to low dose dasatinib (20 mg) due to severe myelosuppression at a higher dose (dangerously low neutrophils!). But once I was able to stay at 20 mg, my CML plummeted to below 0.01% and then undetected. In your wife's case, she went to 20 mg and her bcr-abl levels are rising. This suggests either the dose is too low OR another clone has emerged which is not sensitive to low dose dasatinib. A higher dasatinib dose may work, but given prior pleural effusion, likely best to switch drugs and avoid the risk. I can appreciate sticking with a drug you know and tolerate. And many pleural effusion patients succeeded on 40 mg dasatinib (instead of 100 mg prescribed).

Nilotinib is similar in the way it works with imatinib. I considered nilotinib when imatinib failed, but the strict dosing and not eating schedule wasn't for me - and then I met Dr. Cortes who wanted me on low dose dasatinib straight away.

I would consider staying on drug at whatever dose her doctor prescribes until undetected occurs as it did before. Once undetected, lowering dose after a few successful test reports is worth considering.


The doctor has recommended Nilotinib 300 mg twice a day. He dint recommend a mutation test as he thinks the low dose trial dint work for us.

The only issue he stated with the medicine is that it has to be taken in a gap of 12 hrs and 2 hrs fasting and eating anything after an hour.

The next BCR ABL he prescribed is now after 3 months. I hope the body respones well to the new drug unlike imatinib wherein skin rashes appeared just in 6 days.

Should we continue curcumin and other vitamins with this TKI as well? Any other lifestyle change that you think has worked well for you and you would suggest.


The big issue with nilotinib is qt prolongation (heart rythem )

According to data on nilotinib(Tasigna):
You may lower your chances for having QTc prolongation with TASIGNA if you:

Take TASIGNA on an empty stomach
Avoid eating food for at least 2 hours before the dose is taken, and
Avoid eating food for at least 1 hour after the dose is taken
Avoid grapefruit, grapefruit juice, and any supplement containing grapefruit extract during treatment with TASIGNA. Food and grapefruit products increase the amount of TASIGNA in your body.
Avoid taking other medicines or supplements with TASIGNA that can also cause QTc prolongation.
TASIGNA can interact with many medicines and supplements and increase your chance for serious and life-threatening side effects.
Do not take any other medicine during treatment with TASIGNA unless your health care provider tells you it is okay to do so.

Probably best to avoid supplements unless you have a deficiency and check with your doctor. I assume your doctor briefed you on nilotinib adverse events.

Unfortunatly, we only got information of how to eat medicine ( 2 hr and 1 hr gap) and not what major side effects you shared . We have had a sleepless night as this seems to be a little uphill task and we are slightly worried if we did the right thing to chajnge to nilotinib or would going back to 50 mg dasatinib and wait for pleural effusion would have been a better option.

Is there no simpler ways to mitigate pleaural effusions and only steroids are the way. Leaving dasatinib with whom we had a good run so far seems like leaving home for a hostel life ( anxious)

Thanks, Scuba for all that you do for us.

Your doctor should have reviewed the side effects possible with nilotinib (Tasigna)? Qt-prolongation is not a minor side effect.
All TKI's have side effects. Which is why getting off them or reducing dose is a worthwhile goal.

You may ask your doctor about bosutinib (Bosulif). It doesn't have the same profile as nilotinib and you will be able to maintain your supplements protocol. When dasatinib doesn't work, bosutinib is often prescribed as an alternative.

Regarding dasatinib, I am concerned that low dose did not work for you. But there is evidence that increasing to 50 mg may work and help avoid significant pleural effustion:

My doctor was the prime author of this paper.

Thanks , Scuba

Our discussion is majorly based on the inputs and knowledge we take to him ( through you )

Rest it’s very basic conversation. So , we have decided to follow nilotinib for now ( 600 mg per day through look a big dose )

But since our Bcr abl has gone up , we have to take this try.

In case our body doesn’t cooperate the high dose then hopefully it’s ok to shift back to 50 dasatinib

May be the other drugs are patented and that’s why the doctor dint recommend us those TKI

In India , we self fund our treatment like these. There is no social security programs to take care of such expenditures.

SS86, I've been following your thread and hoping your wife would do well on the low-dose dasatinib. I'm sorry that is not the case. I have a long history with pleural effusions and dasatinib, even on very low dose, 20mg—every other day. I had a Pleurx catheter for almost 2 years so I could drain the fluid at home and still stay on dasatinib at that very low dose since it worked so well for me.

However, realizing I did not want to do this forever I did eventually switch to nilotinib. I started at 150 mg twice a day and I'm now taking 150 mg once per day. I've been undetected since 2016 (I was on dasatinib until 2019) with an occasional blip to detected in the early years, but still with extremely low transcripts. The plan is to attempt TFR this January.

I have an ECG every 6 months (every 3 months at the beginning) to check for QT prolongation issues. Good luck to your wife - I understand the sadness at having to switch from a medication that worked so well, except for one adverse reaction, though an important one. There is also an enjoyable life on nilotinib, too.


Thank you so much for sharing your journey and writing these assuring words. Means a lot to us. I hope we too have a good run on nilotonib.

I wish you all the best for your upcoming TFR.

Can you also share some do's and dont's while being on Nilotonib.


Two months on Nilotinib 300 mg BD while has reduced the Bcr abl count to .019 but the recet blood test shows an increase in bilirubin.

Upon fibroscan it shows first stage of liver fibrosis. Previously on dastainib 50 except for pleural effusion all seemed under control.

The doctor is of the opinion that this isn’t due to the medication and we should continue the same full dose.

The bilirubin increase has happened in the last two months only.

Please advise what to do


SS86, I had one period when I had been on nilotinib for 6 months where my bilirubin doubled and my ALT went up to 58 (almost doubled). My doctor wasn't concerned with one test result and it went back down the next time I saw him. I was concerned because I had severe liver toxicity on Gleevec. Evidently, a transient rise on nilotinib is not unusual. Good luck to your wife and you!