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Just had 19 month PCR and still not MMR

Hi,

Im new to this forum and somewhat new to CML. Wondering if I can get some suggestions and recommendations.
Especially if you were a slow Gleevac responder like me and still are on Gleevac. Would like to know how things have turned out.

Was DX July 2011 and started on 400 Gleevac. I understand I am a slow responder but now I'm reaching that point on whether to stay the coarse or switch to another drug. I have no side effects other than slightly puffy eyes. All blood/liver tests are normal range. I pretty much feel great!
My Doctor at Mayo says he is fine either way but if I want to start hoping to see PCRU one day and be eligible to stop meds a switch might need to be in order. He also said that since I'm CCyr long term that's what matters most and there is now evidence that proves it.
Dr. Druker has also said two months go that he is reasonably satisfied with my results so far for the time Ive been on Gleevac.

What to do?
I like Gleevac and don't want to change if I don't need to. Tasigna has been approved by my insurance so I can switch. I'm just scared.
I can't help feeling like Im asking for trouble staying with Gleevac with PCR levels like this

3months 53% International /20% Mayo
6 months 6.1 Int. /2.3 Mayo
7 months 2.9 Int. /1.1 Mayo
9 months 3.7 Int. /1.4 Mayo
11 months 4.5 Int/1.7 Mayo

Upped to 600 Gleevac

12months CCyr Bone marrow results.

14 months 2.1% Int. /.8 Mayo
16 months 1.3& Int. /.5 Mayo
18-19 months 1.6& Int / .6 Mayo

Thanks for the help!

Cliff

Hi Cliff,

The decision to switch meds can be daunting. My son was dx'd with CML in 2008 at age 10. We see Dr. Druker too. We're considering switching from Gleevec too due to side effects.

There is a doctor at MDAnderson (Texas), Dr. Jorge Cortes, who conducts studies with Dasatinib (Sprycel) & Nilotinib (Tasigna.) He sees patients as well. He may be an excellent resource for you if you're considering a switch to one of those TKIs.

Best wishes,

Tracey

Hello Cliff,

I completely understand your frustration as i was in a similar place to you. I reached the 18 month point and was only just MMR on Tasigna. The key point to remember is you're in CCyR and that is considered a really good place to be by the professionals. Your results are ok, but not great. The main things is they seem to be trending down. In your shoes i would be looking to switch to a 2nd gen TKI to try and bring those numbers down into the MMR ranges and lower. As you seem to have few or manageable side effects on Gleevec then Tasigna would probably be a natural progression due to their similarities. If that isn't a good fit for you then Dasatinib is an option (insurance dependent).

Don't be nervous about switching; you're in good hands from the names you mentioned. You are also quite fortunate to have the option to switch within your health insurance. With Tasigna the fasting is no big deal and I've found the other side effects to be fine.

There's no rush and take the time to think, but have a serious chat with your onc about changing.

Best wishes for whatever decision you make.

Chris

Hi Cliff,
I understand why you might not want to change from imatinib because you find it is easy to tolerate, but I do think that you should expect to see a continued drop in your results.

I agree that CCyR is probably- for the majority- a good place to be, but given the differences in your PCR results between the Mayo lab and the other on the International Scale- i.e they are higher on the IS lab (a more sensitive machine?)and the last two were more or less the same, and if you do want to reach MR5 (PCRu), then I agree with Chris that nilotinib (or dasatinib) as second generation TKI, would probably help you achieve that.

After all, although being at 1.6%(IS) is fine, it is not as low as 0.1%/MR3, 0.01%/MR4, or down to undetectable at MR5, and I think most doctors (even Brian Druker)would agree that, if you can get there, lower is preferable, at least to MR3/0.1%(IS)

Given that you needed to increase your dose of imatinib to achieve CCyR, reminded me of my own response to imatinib, which was good, but slow -
At 600mg it took me 18 months to get to CCyR and I only once had a result of 0.5% before I saw slowly rising levels of BCR/Abl.

If either nilotinib or dasatinib had been available when I lost my CCyR in 2002/3, I would have jumped at the chance to to change.

Sandy

Thanks for all the inspiring replies.

Looks like I will know soon enough.

I hope and pray to have good results!

Hi Sandy,

Please tell me more about your loss of CCyR?

Since it was back in 2003, what did you do?

That must have been scary as hell!

Is everything ok now?

This was due to an imatinib mutation, and yes it was scary even though it was very slow. However, I did have the backup of my brothers donor cells which had been collected at my diagnosis and kept in 'the fridge' just in case I did not hold my response to IM.
Another factor in my case was that I was diagnosed in late chronic phase.... basically my PH+ cells were on the brink of 'cranking up'! This was the really scary time for me and my family. By the time I got to Portland (7 months after diagnosis) to enrol in the phase ll trial at OHSU, I was at a very dangerous point. It was a gamble to go to the US rather than straight to transplant in the UK - but in my case it paid off.

I must admit, we were all really scared that I would not respond- but life is like that, you make a choice.

I responded very well to 600mg IM and had a very slow but steady decline in PH+ cells, then in bcr/abl over the following 18 months. I even had an MR(down to 0.5%) but that's when PCR results started to be inconsistent and the ratios started to rise and fall with each PCR- but each peak was higher than the last, and each fall was higher than the last. Mutation test showed I had developed Y253H.. a p.loop mutation that was resistant to IM.

At that time trials of dasatinib had not started to recruit and they were several months away. I was faced with a decision to take my chances again- or go for reduced intensity SCT from sibling donor.
As it turned out later, dasatinib would have been the right drug to deal with that particular mutation- but it was not available and I thought I could not push my luck any further.
I knew in my 'gut' that I would be OK, so I went for the RIC SCT. It ws not easy at all, but it was the only choice I had at that time and I was at the right place- Hammersmith in London.

The RIC SCT protocol take a little more 'holding of nerve' as my doctor used to say. In the end I had my 'all clear of BCR/Abl' conversation in March 2006- a little over 3 years post SCT. Since then I have been drug free and doing well. I am very grateful for the dedication of CML expert clinicians- without whom I would not have survived.

Sandy

You have been through some stress. I'm so glad things are going well for you.
Now that you had the RIC SCT are you glad you did?
My younger brother is a perfect match. I often wonder if I should go to transplant while we are somewhat young. I'm 45 and he is 42.
You said his cells were kept in the fridge. Can they bank cells for future use?

I am glad I had the transplant, but I would not have chosen to do it if I had another choice of TKI. RIC transplants are easier to tolerate because they use less chemotherapy to kill the cells, and here in the UK they are not combined with TBI) but even so it is not walk in the park by any means.
We have just lost Ali (a long time member here) to GVHD after a RIC SCT. She was intolerant of all the TKIs she tried- even ponatinib- and even though she responded well clinically and had a molecular response, she had to eventually agree to have a transplant. RIC transplants have the same risks of dying from acute GVHD as traditional transplants.

It is possible to bank your brothers stem cells, but I imagine that it would be very costly in the US.
TKI therapy will not kill you, SCT is a risky strategy because of GVHD- I was fortunate that I responded so well, but it could easily been a different story.

Sandy

Hi Cliff,
If you get the chance I would thoroughly recommend Nilotinib/ Tasigna
I found it easier to tolerate that Glivec and it has made a difference to me.
You get used to the fasting and it becomes routine.
After 2 and half years (of which 21 months on Nilotinib) I am now at 0.05.
Good luck

Hi Friends,

I switched over to Tasigna 600mg a day 3/27. First 3 days had a mild headache and some pain in legs. They both quickly went away and I feel great now. I wouldn't even know I was on anything. I pray it continues!
I was on Gleevac before this for almost 19 months and the only thing I experienced was some Eye lid edema so I should be ok,...I hope :)

Thanks for all the help,

Cliff

Hi Cliff, good to hear your news and that despite the switch you are now feeling great. Please update us as you go along.

Sandy

Your story is a wonderful tale of your inner strength, courage and determination to beat your CML.
Well done Sandy, and thanks for relaying your Good News history. This is inspiration for all.