In 2012 I was diagnosed with CML. First 2 years taking imatinib, no molecular response. After further treatment with desatinib, “Sprycel” in 2015 there was a molecular response of 0.0121. Currently with 0.0049, I would like to reduce the dose. I ask if there are studies about reducing the dose to 70mg or 50mg. My doctor says there are no studies and the minimum dose is 100mg and i will like to ask for help about find another Docter and maybe find other opinion. is there a possibility of healing, and stop the therapy?
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Healing CML ?
Paula, the Destiny Trial in UK examined this question. Professor Clarke talked about the results at the CML Patient day last year. You can isten to his talk on this link . There are links to papers on this trial on this web-site. If you think you meet the criteria (and it sounds like you do from what you have said), show the information to our consultant and see what they say. Good luck and please let us know what happens.
There is also this study which examines using 50mg as a starting point.
You can get the full text here:
To be frank, if your doctor says the minimum dose is 100mg I would find a new doctor. I take 20mg.
Congratulations on your PCR results. The way I interpret your question makes me think your current PCR has led you to be more confident in reaching a new milestone in your treatment, which is a dose reduction of Sprycel.
Fortunately, on this forum you will find many stories of people using lower doses of Sprycel. I myself have read them and had very positive feelings afterwards, even though I take Imatinib. So this is good news for you.
Allow me to say that it seems you feel uncomfortable with your doctor’s opinion on how much Sprycel you should take. In my view, some doctors are limited to using standard practices or lack sufficient knowledge to go beyond the “official” protocols. I don’t know your doctor nor the context behind his words, but I would look for other opinions (I actually did), specially from sources whose practice include dose reduction and are aware of new approaches on treating CML.
Good luck on finding the right support for your case.
Thank you very much for your answer. Here in Portugal I need help from the state doctors, to get the medicines for free. I went through the 5th doctor and for the question I asked (can I stop taking the medication or reduce the dose?) the answer is No. At this moment my only symptoms are fatigue. And that is why I assume that I am "healed" even though the doctor says "you have a disease without a cure and if that disease goes through the acute phase you die in 6 months". I do not know anyone who has gone through this disease and there is no "psychological support or group therapy" here. I feel alone in this process and disoriented. I feel that if I left these medicines or cut them to half, I'd still be fine. To be honest my biggest concern is the adverse effects of taking these chemicals for so many years. thank you
In your case, your doctors are scaring you unnecessarily. CML is actually well understood. As long as you have few or zero blast cells, CML is a very slow disease. Very slow. I know a patient who had similar PCR test results to you who wanted to get pregnant. She stopped treatment and was monitored every month for the nine months. Her PCR did rise and quite a bit (PCR > 20%). She stayed off drug until her babies were born (twins). After restarting therapy (on a lower dose mind you), she quickly regained MMR (PCR < 0.1%). She had no blasts during this time which is key. By the way, adequate vitamin D(3) helps blast cells even leukemic ones to not stick around.
You have plenty of time to 'experiment' and find the correct lower dose which works for you. Sprycel, recent research is showing, may actually work better at a lower dose than the current 100 mg starting dose. This is because sprycel depresses the immune systems natural anti-cancer fighting ability. In other words, more drug is not better. You want to find the sweet spot in terms of lowest dose which still kills CML faster than cells reproduce and also enables your immune system to help fight the disease.
Use the paper linked by David and show your doctor. Educate your doctor so they help you help yourself. If they refuse to read the paper, get a new doctor (one of the co-authors of the paper is my doctor.)
One more point - you will learn more on this forum on latest trends and advances in CML than you will from your doctors. General oncologists are not researchers who know the latest research results. They just follow the protocol which are as much as 5 years out of date.
I hope you feel more confident after your post. I have been taking Sprycel for almost 10 years. I started at 100mg and developed a pleural effusion after 2.5 years. (Hopefully avoiding a pleural effusion by taking a lower dose is one of the best arguments around!) My dose was reduced to 50mg. and I was fine until last October, 5.5 years after my first dose reduction, when I developed a second pleural effusion. This one has not gone away and my dose has been reduced further to 20mg. My response hovers between <.003 and .0000.
Also, I have split my pills. Here is a post from the LLS discussion board on the subject.
Paula, I suggest you show your consultant this article This only shows that summary - he/she will likely be able to access to the full article. If the consultant you are seeing is a general haematologist, and not a CML specialist, they will find it difficult to stay up to date with the treatment of this quite rare condition. You will find that you need to help them with the information you find through this forum.
I just started 20 mg Sprycel, having educated my hemotologist (I gave him Scuba’s study) along with some good ole’ assertive standing up for myself. He argued with me for months. He started me on 100mg in January but way too strong, so took a break, tried 80. Still too strong, took a second break, tried 50 and a third break. So I told him I would just split my 50’s in half: I took 25 mg for 2 months and my PCR went down from .0534 to .0132 in that time. Still a (little bit) low WBC and Hgb, so I finally talked him into 20 mg. Started 3 days ago.
I don’t think it hurts a bit to split them. I used a pill splitter, took the first half immediately and the second half the very next day. They were always a wee bit uneven, so I made sure they followed each other before splitting the next pill.