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Hi all,

Just found this message board. I’m 42 and was diagnosed with CML last Oct with bcr-abl transcripts >50%. I was put on Imatinib right after diagnosis and went into complete hematological remission almost immediately, but my bcr-abl levels only went down to 17% after 6 months on Imatinib and were at 20% after 9 months on treatment despite staying in complete hematological remission. I was just switched to Nilotinib in an effort to bring down my PCR results. I just wanted to get everyone’s thoughts on why I’m doing so well hematologically, but my transcript levels are so stubborn? Also wondering if this stubbornness of my transcript levels means I’m likely to have a poor prognosis and if I should be considering more aggressive options earlier on (i.e. transplant)Any thoughts would be greatly appreciated. Thank you!

Howdy, glad you found us!

Sorry to hear about your slow response.  My first thought is that more information would be good to have.  Has your doc mentioned BCR/ABL mutational analysis?  Do you know why nilotinib was chosen as your next TKI?

Thank you for the quick response and for the welcome. I just gave blood for mutational analysis and expect results back next week, but wouldn’t it be strange to have such a good hematological response with Imatinib and have a mutation? Nilotinib was chosen for me based on the potential side effect profile (doc was concerned about potential pleural effusion with other TKIs). I’m encouraged by the blood work, but quite concerned about the transcripts. Please let me know if you have any other questions. 

Have you had any FISH testing done for BCR/ABL?  I've heard that the FISH test is more valuable than PCR until your tests for BCR/ABL get down to the 1% range.

No I haven’t. My doc hasn’t brought it up. I can mention.

It may have something to do with your age.  There are a handful of us in our late 30's to mid 40's who have been slow responders even to second generation TKI.  I was started on Dasatinib 100mg and was at 23% after 3 months....worrisome for sure but then 1.8% at 6 months.  Had I been started on Imatinib I may not have reached CCyR.  I never did reach MMR on Dasatinib and only recently reached MMR after 33 months (12 months on Nilotinib).  Getting under 1.0% is important and I believe that you will on a second generation TKI.  

A mutation test is not a bad idea and ultimately helps in deciding which TKI to switch to.  You are still within the first 12 months so although you missed a key target on Imatinib there is every reason to think Nilotinib will do it.  Be very strict on not eating and take exactly at the same time morning and afternoon.  

Hey there,

Sorry to hear of your diagnosis. Like us it takes time for things to work. These milestones are guidlines especially in the 1st year of treatment. As others have said your in the 1st 12 months of treatment. Switching to Nilotinib was a good choice as it’s fairly similar to imatinib and was made for imatinib resistance like maybe what you are experiencing. The mutation analysis will yeild what drug works best against any mutations that you may or may not have. To be honest this stuff just takes time to do its job, and it also is true for younger people. I constantly see people of our similar ages that seem to respond slower. Some may disagree with this but I am going by what I’ve seen in the 28 months I’ve had my diagnosis and reviewing these posts.

I am very sure that you will drop lower on Nilotinib it’s about 30x more potent than Imatinib and is far superior. Reaching CHR (complete haematological response) that you have is the easiest of all milestones to reach when on TKI.

Transcripts in short are copies of the BCR-ABL translocation onco gene. (The thing that’s responsible for our disease And the things that’s blocked by TKI). The PCR test measures these by a percentage and the lower those get the less active your CML is. In the early days it’s slower for some and in the latter days it’s slower for others or vice versa. Everyone is different and it’s unfair to expect us all to respond at the same rates. I am on Nilotinib and only just on the cusp of MMR at 0.1 at 28 months so far (not broken that barrier yet).

When 1st starting out this journey you’ll hear lots of talk of hitting MMR but the most important milestone is CCYR <1% at 12 - 18 months is treatment goal met (MMR is a bonus and is for those wanting eventually to cease taking the drug, obviously the lower we get the better). Difficult to see the light at the end of the tunnel but you will get there like the rest of us and potentially lower.

The most important thing is adherence to the drug take exactly as prescribed everyday without missing doses. With Nilotinib you’ll take meds twice a day with 3 hour fasts required for both. It’s easy when your in the swing. If Nilotinib doesn’t work for you you’ll have another 3 or 4 choice of meds. You won’t need anything other than TKI.

You’re going to be fine.

Hang in there.

Alex.

Thank you all for the thoughtful replies. I’ve been pretty nervous since being diagnosed! I started Nilotinib last Sunday and definitely not tolerating as well as Imatinib were I had almost no side effects (I am now getting some headaches and nausea and praying it goes away). I’m really hoping the side effects get better with time and can resume an active life style. I hope you guys are right about the response to Nilotinib! I’m just worried if running out of options. Would appreciate any future tips or thoughts. 

We’ve all been there and you will have a good and bad days coping with this diagnosis. Take things slowly in your stride its easier said than done believe me but try not to panic this is a marathon and not a sprint. I am sure Nilotinib will get you lower. The 1st few weeks on Nilotinib can be rough and now the symptoms are negligible for myself. It just takes some time. And don’t be alarmed if you get new symptoms further down the line too. After all these are toxic pills but I’d rather that than CML.

Reach out if you have any concerns on Nilotinib I’ve been on it for 28 months thus far.

Alex

Thanks Alex! I’m having some strange symptoms popping up (seem to get new ones each day). My pulse is pounding, have developed lower stomach pain and my face feels sunburned. Does any of that sound familiar? What have been your side effects in the past? Once again I hope this is short term and can’t imagine this is good for our bodies with all the years left we would like to live.

Yes you will. The red flushing of the face and parts of the body I had for sometime especially in the mornings I get those far less now. Yes I got the pulsing too I could hear it in my ears especially in a hot bath thats come and gone. Yes had lower abdomen pain on and off on the left side near my hip this persists but it’s negligible. I’ll list what Ive had and what persists.

I got:

Sore scalp (gone)

Dry scalp and around hair follicles (persists)

Hair thinning on head (gone)

Some pubic hair loss (persists) 

Reder whites of the eyes (persists)

Skin rash mainly noticeable on upper legs and upper arms - not itchy (persists)

Increase in zits from time to time in places the sun doesn’t shine (persists)

Dry mouth - mainly mornings (on and off)

Bleeding gums (on and off)

Numbness and tingling on first 3 finger tips of right hand (on and off)

Sharp pain within forearm or likened to a electric shock. It’s difficult to describe. (Gone)

Fatigue (on and off) seems to cycle for no apparent reason - this includes low motivation and feeling down in the dumps (could be depression or anxiety) the latter I have suffered from for many years post diagnosis.

Shin splints (on and off) noticeable when I run (which I used to do a lot of post diagnosis now I manage 10mins if that - this upsets me the most).

This looks like a scary list but I don’t think about any of them anymore they’re more annoyances than anything else. Some people have it far worse so I’ll count myself lucky for now.

I hope that helps mate

Alex

 

 

Helps a lot Alex, thank you! Look forward to the day when this isn’t constantly on my mind (if that ever comes).

Mate I’ve had it for over 2 years the way you think about it changes overtime and that’s the key. Of course it’s on my mind everyday but in different ways. You’ll get there I promise. I’ll worry  when if my doctors worries and that days hasn’t arrived as yet.

Alex

Hi Alex ,have you ever asked if you can change to Dasatinib or thought about it,your side effects sound awful and so many of them and ruining your life .Touch wood I don't have any side effects now been on it for about 18 months I think after changing from Imatinib.Dont know how you cope putting up with all that ,I feel so sorry for you ,Denise.

Hi Denise, you don’t have any side effects at all? That sounds amazing! How long do you have CML and how long have you been on the drug?

Hi, diagnosis December 2017 aged 60 was on Imatinib at first had lots of side effects with that and so tired all the time response was slowing after about 13 months so changed to Dasatinib50mg .Within days of changing all side effects went away ,the rash, the hooded eyes ,the fatigue I looked and felt so much better .Had a headache first thing in the morning for about 5 days or so but by the time I had breakfast it had gone .I take every vitamin supplement recommended it's a bit pricey but if they help I will take them .Been undetectable now since October 2019 ,reduced dose to 40 mg about 6 months ago hoping to reduce down again soon .Denise.

Hi, I was reading some pubmed articles this past week that suggest that gleevec is not a good medication for people who have just e13a2 transcript as opposed to people with the e14a2 or a mix of both. Do you know if there is a correlation with the slow responders you have spoken about?  I don’t see a lot of talk of transcripts on this forum. Just a thought!

Been having terrible side effects to the Tasigna and spent the last couple of days in bed as a result. Doc just pulled me off and we will discuss next steps tomorrow. Wonder if he’ll lower my dose or switch TKIs again. Ugh! What a pain!

Hi, is your doc a CML specialist .If Dasatinib is suggested he might say 100 mg is the norm ,I refused to go on this high dose because of the toxicity and the chance of pleural effusions ,my doc gave in and  agreed with 50 mg .This lower dose did the trick .Check out earlier posts about less is more with Dasatinib.Find Scubas posts you may find links to the latest research papers ,Take notes to show your doctor ,Good Luck hope you get sorted and feel better soon.

Thanks Felix! Will definitely bring up your suggestion. My doc is a CML specialist. It’s been a really long weekend. How’d we all get so lucky?

I have also read the reports that those with the e13a2 transcript alone tend to respond more slowly to imatinib. It is not so clear how e13a2 CMLers respond to second generation TKIs. I am recorded as e13a2.  

Hi!

I am also 42, in the UK, diagnosed Dec '19, and also have had a slow response to Imatinib that did not meet the guidelines.

I had a mutation test, but it came back negative. Apparently some people just don't absorb the Imatinib as well as others, and it can result in a slower response.

I was advised to switch to a 2nd-gen TKI, and I opted for Dasatinib. It's a bit like starting again from scratch. Most of the side effects seem to be settling down though now. I'm yet to have another BCR-ABL test done, so I don't really know how effective it is for me yet.

Sounds like we are in a very similar boat. Will be curious to hear about your response to Dasatinib. What dose are you taking?

Spoke to my doc this morning and he wants to to take 3 days off of Tasigna and then restart again at half the dose (just taking in the morning dose) to see how I adjust. Praying I don’t get the same side effects!

I'm on 100mg Dasatinib. I seem to be tolerating it right now, and as I say I don't know my latest BCR-ABL result yet, so I haven't fought to lower the dose or anything like that. After the first week my platelets crashed and I was struggling with fatigue (or possibly just depression, I find it hard to tell the difference), but I'm 35 days in now, the blood counts have picked up, and I'm mostly feeling ok. I had an x-ray to check for fluid build up on the lungs. It was suggested to me that if my platelets got any lower, I would have to take a break and restart again at a lower dose, so this kind of advice seems standard. Hope this relieves the side effects for you.