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Sprycel - Lack of Response

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Hi All,

Feeling pretty discouraged and scared at the moment. I was diagnosed Feb. 2018 with PCR 97%. I was started on Sprycel 100 mg and PCR has been steadily dropping, but began dropping more slowly recently and has now started increasing at 15 months. My results are below:

PCR at diagnosis: 97%
3 month: 3.822%
6 month: 1.069%
9 month: 0.547%
12 month: 0.256%
15 month: 0.945% (now worried)

I read a lot about people switching to Sprycel due to lack of response, but very few that switch from Sprycel due to lack of response. It seems, most people switch from Sprycel due to side effects. I'm wondering if there is anyone out there that did not respond well to Sprycel, but switched to a new medication that worked successfully?

I found the same thing and was also very discouraged. My numbers are as follows on 100mg Sprycel:

64% at DX
23% 3 month
1.9% 6 month
0.81% 9 month
0.32% 12 month
0.58% 15 month
0.111% 16 month via bmb
1.2% 18 month.

We decided to switch to Nilotinib without mutation testing because it approaches the disease differently than Dasatinib and also does better if a handful of mutations are rearing their head (F317 I think is one). I just pray and will find out mid June how things are going. Just think that just because it is uncommon does not mean it is unmanageable. The great news is that you responded in the first place (others dont). Also some respond clinically but the blood counts drop to unsustainable levels which is not the case here. Keep your head up. Mutation testing is not a bad idea but we decided to give Tasigna a go for 3-4 months. I am much less worried than I was when test came in. There are many options for you. It just doesnt go perfect along the way. Take care.

Job,

Thank you for the response. That makes me feel a little better, but definitely still trying to come to terms with these results. My wife is also pregnant and due in June, so that is just adding to the stress and feeling of unknown. Can I ask whether you considered Bosutinib or Ponatinib and how you and your doctor decided on Nilotinib? Also, are you doing monthly testing while you try the new medication? Thank you again for the response.

Ian

I have 3 kids and is probably why I worry when I do worry. I did not consider the other two because the thought was to try a 3rd gen as a later option. I would add that I know someone who failed all but Ponatinib due to T315I mutation and that was over 7 years ago. He is pcr 0.02 that whole time. Others have had to go on and off medication for low blood counts and eventually found the right medication and dose.

The only reason I tried another med is because I went 0.111 to 1.2. In your case I probably wouldn't change anything just yet unless it climbed in two consecutive labs. I believe 0.5 is within error.

Sorry forgot to add I did a lab one month after starting Nilotinib but just to make sure nothing was climbing (WBC or basophil) and everything looked fine. Next test is 2.5 months out from last lab.

I know of someone. A friend of my daughter has CML, she’s 34, started Imatinib in Oct. 2015, went to Sprycel, went to Tasigna and is now in a stop trial. What are the odds of my daughters childhood friend and I ending up with CML, within three months of each other?

I texted her and confirmed that she failed Sprycel.

Prof Steve O'Brien talked about switching when PCR is drifting up in his talk at the patient day last September. His talk is here the bit about changing drugs due to PCR increasing is from about 14 minutes in. I'm lucky that I didn't need to worry about mutations; I responded (a little slowly, with a plateau for about 4 months) to imatinib, but got to MMR and have sustained), but having a read a few stories on here if you've switched to nilotinib or dasatinib and are not making progress mutation testing is a likely next step.

Hope this is useful.

hi, buddy! first of all, you need a retest. You should not change your treatment based on a single pcr because it's a very sensitive test and a lot of variations can happen (i'm 5 years and 4 months into treatment and i mmr4 - 4.5 with a lot of variations). I know a patient who went for MMR4 to 1% and than had a retest and she was mmr4 again (i.e.: the 1% was a lab mistake). You also should look for interactions (drugs and food). Good Luck!

Thank you to those that responded. It has made me feel much better. I feel like I have a general plan of action now when meeting the oncologist: First retest for PCR and if the trend continues up perform a mutation test. If the trend continues up it helps a lot to know there are others out there that did not respond to Sprycel, but we’re able to respond to other medications.