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When to Change Medications?

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Hello All,

For background I am at 4.5 years on Sprycel 100mg and have been hovering around 0.05 to 0.09% BCR/ABL for the past year. I met recently with my oncologist and learned my most recent test was at 0.09%. A fine result for me as it is status quo, but not low enough to consider lowering my dosage according to my oncologist. I don't have horrible side effects with Sprycel except for bouts of fatigue. My oncologist has suggested changing medication to see if it could lower my numbers a bit more and perhaps alleviate the fatigue, recommending Tasigna. I know at this point there is no "right" answer but I am hoping to get people's thoughts. Stay the course or try something new? I'm a little hesitant to jump into a new batch of side effects, but also hopeful that perhaps this could help lower my numbers.

Thank You,

Ian

Ian, give Imatinib 200mg a try.  It is unlikely that you still require a high TKI dosage when your CML is at a low level.  If there isn't any negative change you can likely quickly reduce to Imatinib 100mg without it adversely effecting your CML level.  

Buzz

I had a decent downward trend on Dasatinib 100mg as you know but could not get below 0.32.  Then I had a result come in at 1.2 and we immediately switched to 600mg Nilotinib.  My latest results are 0.017, 0.017, and 0.015.  Looks like a plateau but I am hoping to gain another zero soon.  I will be 5 years in four days from now.  My doctor also did not want to lower to 400mg just yet.  To answer your question, I would give Nilotinib a try.  It is not as bad as it sounds regarding the fasting and having to take it twice a day.  It becomes second nature after a while.

Buzz and ColoradoGuy,

Thank you for the response. I think I will try to move forward with the switch to nilotinib. The way I see it, worse case is side effects are bad and I switch back to Sprycel. Best case side effects are better and my numbers go down! I'll keep you all posted. Sounds like the switch will take several weeks before I can order the medication. ColoradoGuy, what times have you found to be effective in taking the medication? I am leaning toward 9am and 9pm.

Thank You,

Ian

hey man,

0.09 isnt to be scoffed at. I know that is borderline MMR but it is MMR all the same. I would reduce dose when maybe you drop a bit further to create a bit of a buffer. We know this can take time and I am sure you will eventually drop further as we have seen countless times on this forum.

I have been on Tasigna since day dot, and other than initial symptoms I am mostly fine but some do persist but I have mostly gotten used to them. As Colorado guy says the fasting becomes second nature. I take my meds at 8am and 8pm which almost works perfectly for me. Only time its a pain is a planned meal out or social event - where I have cheated a little in the past. Still took my meds but sometimes an hour later on those occaisions. Its not advised but its worked out ok for me.

Onwards and downwards mate - I am against switching drugs unless absolutley neccasry -  I like to think of having several tools in the toolbox for when really needed. You are MMR I see no need for a switch personally if you hold that line. I do also think doctors are unlikely to reduce dose until you maintain a certain level for a sustained amount of time.

Al

To be honest I started taking it first thing in the morning as soon as I woke up and then an hour before dinner.  It has now become I just take it twice a day and make sure not to eat before or after.  This means I am taking it 9-12 hours from the last time I took it.  Naturally 12 hours exactly is better, but it is not always possible.  I found that a pill box with AM and PM sections keeps me from trying to guess whether I have taken it already or not.  

Hi there.  I have also been MMR for last year fluctuations between .06 to .006.   My current doctor wants to see about changing my meds as well and he won’t do a dose reduction either. Currently been on dasatinab for 3.5 years. Last year in 80 mg from 100mg.  I recently moved backed to Georgia from Oregon. I’m currently in the works to see Dr Cortes from University of Georgia.  I read on here recommendations from Scuba he is a great doctor and has studies showing dose reduction has good results.   I will hopefully be seeing him in the next few weeks and I will post here what he says about dose reduction or if he thinks I should switch.   I feel the same   Not sure you should switch meds yet.   According to studies some of us will never get TFR.  But as long as we maintain a MMR that is good.  Even though my focus is TFR.  I don’t think any of us want to be on this Medicine  forever especially the toxicities of the unknown later on in life.  

Hi Everyone,

Thanks for all the great responses! I chatted with my oncologist a bit more and we decided we would wait for a couple more tests (6 months) before deciding to switch medications. I doubt anything will change, and that's okay since I'm in an okay place. Ultimately the decision will be based on side effects. Sprycel hasn't been bad, but it would be nice to minimize the bouts of fatigue and low blood counts. Especially with a 3 year old and 6 month old running/crawling around. Hopefully if numbers go a little lower in the next 6 months I can first try to lower Sprycel dose. Otherwise, we may try a different medication at that time with the intent to minimize side effects and potentially lower numbers. I'll let you all know how it goes in the future! Thanks again for the responses!

Ian

Ipmaki I think your doc is right. If it ain’t broke don’t fix it. That is at least one way to look at it. I just switched to Tasigna after 11 years on Imatinib. The imatinib was failing as my numbers were starting to rise so I had no choice. All I can say adjusting to Tasigna is no cake walk, that has been my experience. Been on it about 6 months and still struggling with side effects. And my numbers are not dropping as much as I hoped. I do feel however that if I was put on Tasigna early on instead of Imatinib I would be possibly in TFR. I believe the longer this disease lives the better it learns how to adapt and mutate. Switching is not a bad idea and I sometimes think I should have done so 7 years ago when my doc suggested it. My thinking at the time was what’s the sense of adjusting to another set of side effects when I’ll probably still have to be on the new drug for the foreseeable future. The real question you may want to ask is if you switch and it doesn’t work can you go back to the original drug……

Hi, I wouldn't change to anything right now  no way your numbers are great ,your side effects will be much worse than Dasatinib,I have been there .I changed to Dasatinib but I refused  100 mg cos it's too toxic ,I started on 50 mg ,and gradually reduced ,I am now on 10 mg and holding undetected.Less is more with Dasatinib ,I would actually try reducing to 50 mg first and see if that works maybe even 20 mg .Please try before changing ,then if you have no joy then change .Some docs are stuck in their ways and won't budge on reducing .Good luck ,Denise.

Ian, if you ever get around to gradually reducing your Sprycel dosage I think you will find that when your CML has been plateaued at a low level for a prolonged period of time, gradually reducing your dosage won't have an adverse effect on your CML level.  At that point TKI dosage just doesn't seem to matter.

Hello Pojo,  

 

I have been taking Tasigna about a year and a half. I was diagnosed May 2020 and was prescribed  Sprycel and then Gleevac (spell?) I suffered a a minor stroke from a spike in blood pressure. I changed oncologist and he put me on Tasigna If you don’t mind sharing some of your side effects. I just want to know if some of the issues I have had are common with Tasigna.