I am writing because my mom started sprycel 140mg middle of january. Her latest BCR/ABL showed a complete molecular response in middle of April . The sprycel is working on the CML but she is very weak and can't eat . Her stomach always bothers her and she does have very mild plueral effusion. The Dr lowered her dose of sprycel to 100mg a week ago but she is still miserable . She also takes a proton pump inhibitor for her acid reflux. i just want her to feel better. I keep reading that a high dose is not always needed. She was in the accelerated phase when she was diagnosed. How long do you have to hold a complete molecular response before lowering the dose again. The oncologist was reluctant to drop her to 100mg but since her BCR/ABL showed a complete molecular response she was willing . i am praying she can hold the response but also would like to see her lower the dose even more. Any info would be great. Thank you.
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80 year old mother on sprycel
When you say "complete molecular response" are you saying she is "undetected" for bcr/abl?
Your mother could easily drop her dose to 20 mg and test in one month to see if she holds "undetected". There is an excellent chance that she will. Her side effects will likely disappear.
I was put on 20 mg sprycel when my PCR was over 50% due to side effects (myelosuppression) by one of the top 4 CML researchers in the world. He knew what he was doing. My PCR plummeted to undetected where it remains today. I now take 20 mg every other day preparing for eventual stopping.
Sprycel, unlike gleevec, is a threshold drug* where more drug does not lead to improved response, but actually could lead to impaired response. Each person is different in what their personal dose needs to be. Recent research has shown that a vast majority of patients will actually do better on half the pharmacokinetic dose of 100 mg. 50 mg is fast becoming a new starting dose for sprycel. Patients like myself did even better on 20 mg. Your mother could very well be one of those people especially since she exhibited pleural effusion.
(* A threshold drug is one where most of a drugs effectiveness is achieved once a minimum level of drug is taken. More drug does not lead to any better response and in some cases can depress response due to immune suppression. But each person is unique in what that ideal level needs to be. For some, best response is achieved at full 100mg, some even need 140 mg (rare). But many, it is being observed do best on only 50 mg and some on 20 mg. Finding the best drug level is what a doctor should work towards with their patient - and once a doctor sees impressive response as your mother achieved, lowering the dose should be the next course of action)
Thank you for your information. Maybe because she was in accelerated phase at time of diagnosis is why her dr started her at 140. She did drop to 100 last week. How long would she have to hold the response before dropping it again? I appreciate your info. Do you have any literature on the effectiveness of being on a lower dose that I could show the Dr?
Hi,
It may help if you can get her to drink 1 tsp of Apple Cider Vinegar in some sparkling water. It really does help with some digestive issues. Has she been tested for Helicobacter infection? This can be the cause of acid reflux GERD etc.
She may also feel weak because of low HGB. do you know her level?
Sandy
Also she is on a ppi and that can diminish the potency of spyrcel. Is it crazy to think that even though she is on 100mg of sprycel it’s really not quite that high because of the ppi? Any thoughts?
Sprycel can suppress blood counts. It suppresses mine even on 20 mg.
If she's on a PPI, then her effective dose of dasatinib is certainly lower than 100mg. It depends on which PPI - some are more potent in this regard than others. I've seen a study that suggested typical doses of esomeprazole (Nexium) may lower dasatinib bioavailability by about a third. Pantoprazole may inhibit even more.
Here's an interesting article on this subject we posted some time ago. Interestingly, it suggests for those who do not want the reduction in effective dose drinking pepsi or coke might work nicely!
https://cmlsupport.org.uk/article/pepsi-or-coke-influence-acid-dasatinib...
David.
My mom had a complete molecular response a few months ago. She is on 100mg of syprycel and just had thoracentesis done on right side for pleural effusion. I am nervous the fluid will come back and that she will have permament lung damage. Her dr said if the fluid comes back she will lower the dose again. Her chest xray stated coarse interstitial disease which scares me and I am concerned it's permanent. Any thoughts would be appreciated.
The doctor has never lowered the dosage from 100MG?
I'm 73 and was diag. with CML Feb of 2018. Put on 100mg daily of Sprycel- that lasted about 3 weeks- BAD side effects, out of breath, loss of appetite etc..
Dosage was reduced to 80 MG daily- that also lasted maybe a month or so when same bad side effects appeared.
Lowered again to 50 MG- I was on 50 mg for a good year till June/July of 2019, but loss of appetite, shortness of breath, and fluid build up in right lung again. Almost had a thoracentesis done but my oncologist decided to stop the medicine for a month. June2019.
* My BRC/ABL1 and FISH test numbers went up from not detected to detected etc during this time, but after 6 months of the lower 20 MG daily dosage, my last 2 tests are back to NOT DETECTED!
Since July of last year the results are truly amazing regarding side effects.
I even gained almost 20 lbs of the 30 lbs of weight that I lost from 2018.
I am not a doctor, but I would seriously look into getting your mom's dosage of Sprycel lowered!
All the best to you and your family!
Chuck.
Chuck, Thank you so much for your response. My mom was at 140mg for 3 months and the last two months has been 100mg. She also takes a proton pump inhibitor for her gastric felux and I believe that can lower the sprycel too. I have a call into the oncologist . I am worried about her lungs and the pleiral effusion and her becoming too weak. The last time I spoke to the oncologist she said if the fluid returns she will lower her dose again. I am so upest and just want her to feel better. thank you again for your thoughts.
Because your mother is undetected there is absolutely NO REASON for her to be on 100 mg.
Any doctor who continues to prescribe 100mg dasatinib for elderly patients is uninformed and dangerous. Show her doctor the article above and do online searches for dasatinib, low dose, Cortes for more information.
In your shoes (and your mother's) I would reduce dose to 20 mg and monitor the first few months to verify no change (and I would wager no change) in her status. At 20 mg her side effects will virtually disappear. Also, consider adding quercetin to her diet which aids in senolytic cell removal. May be very beneficial for older people: I take quercetin regularly.
I am undetected for over three years and take 20 mg dasatinib. Your mother should too. She might even be a candidate to stop treatment altogether and test treatment free remission.
Find another doctor if he is not willing to lower her dose to 20 mg. She can always increase dose (i.e. to 40 mg.) if she loses undetected status. At least she will have better quality of life.
My mother developed pluerual effusion from spyrcel at 70mg and had to have it drained twice and was having a lot of gastro issues too. the Dr stopped sprycel and plueral effusion cleared up and gastro issues much better. My mom has been off sprycel about 6 weeks now and feels great. her cbc blood work is good but in her last BCR/ABL test it was now detectable so she definitley needs a TKI. Her dr consulted with the medical group to see how to move forward and they are switching her to bosutinib and starting at lowest dose which she said is 100mg. I don't know what to think about this switch. Does anyone have experience with bosutinib? Thank you so much for all your info.