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Last br abl test showed a spike

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Up till now, I have shown a full molecular remission for several years have been on glivec for 13 years.

I was asked initially to stop given for 2 weeks, before I went for an operation due to concerns with lowered blood count and hemorrhage risk, by clinical surgeon.

 

After op they asked, I stay another 2 weeks off glivec. After the 2 weeks,  I went back on it and was tested 3 weeks later for my  6 monthly bar abl test, which I now have been advised has shown a spike by my haematology consultant and I will get another bar abl test in a couple of weeks to check again, when I'm next at clinic.

i have noticed since being back on glivec, the side effects are more pronounced now than they were before I stopped it,  as although I was tired I have managed to continue working full time.

Now I find, by afternoon I feel exhausted and have had other side effects  like a dry mouth, which i never had before. I have also had some pains in joints again.

Has anyone else had a break from glivec and experienced worse side effects on resuming it?

Or is it just that it's doing its work again to lower my bar abl count and should settle in a month or two?

Hi!

Spikes and drops are all relative. 

Do you know the percentage figures before and after? For example, an increase from 0.02% to 0.04% might be double - and that sounds a lot! - but is actually pretty insignificant.

David.

I'm not sure where it is now, I'll find out, when next at clinic, I was around  0.013.

I suppose I'm a bit worried also with side effects being worse now and it impacting on my ability to keep working.

0.013, assuming that is on the International Scale, is clearly approaching MR4 so a pretty deep response. 

Finding out the new figure is the important bit. Results can bounce around a fair bit, but usually settle back. 

Have a look at this thread I started a few years ago.I was worried about spikes in my results, but I'm happy to say I'm well into MR4 territory now. 

http://www.cmlsupport.org.uk/thread/10316/when-does-blip-become-trend

Please update us when you get the latest result. 

David

Hi Kenny

I've never been Imatinib free but I was on half dosage ( 200mgs) for a year (Nov 2014-Oct 2015) on the DESTINY trial. However, my PCRs started rising so I went back on full dose ( 400mgs) and  had side effects from Oct I never had before. I think the worst has been the acid reflux and very painful indigestion which Omeprazole from my GP has thankfully sorted OK. Never had this in the 5 years before I went on the trial. Very strange but thankfully I feel great now and all side effects have abated.

So, in answer to your question, yes, new side effects after a longtime but temporary it seems. Strange stuff, isn't it but it does its job so mustn't grumble, as they say.

Hope the exhaustion improves for you

Best

Chrissie

Thanks for link David, yes I will update on what result was, once I have it.

Thanks for the reassurance Christie.

Its good to hear that some has experienced a similar thing with Glivec.

Hopefully the side effects will clear for me soon as they did for you, I'll fight through it as I did when first on glivec.

 

 

Hi, As David said spikes are all relative, and it depends where your numbers are. I too came off Imatinib for a month restarted and found it took a couple of months for my numbers to fall below MMR again. Yoir numbers are still very low and good. Hope things settle down with the side effects, like me I assume the drug is taking a few weeks to get back in the system, and your body is adjusting again.

Hi Kenny,

I was taken off Dasatinib for three and a half weeks due to a large pleural effusion and partially collapsed lung (nasty side effects of that particular TKI). I restarted on Dasatinib100mg/day 7 days ago and the side effects have returned with great zeal... I can't remember the fatigue and dizzy spells and nausea ever being this bad! I still work full-time 8am-5.15pm, but by 2pm I'm totally wiped out and in serious need of a 'power nanna-nap' - like you, I hope the side effects settle down and I re-adjust quickly.

Even though I was off the TKI for three and half weeks, my bcr-abl results from last weeks blood test came back dramatically lower than the previous ones - I'm now at 0.026%IS, down from 0.087%IS 3 months ago (much rejoicing was had when those numbers came in)

Re. the side effects, I spoke to my Haemo yesterday and he basically told me to weather it out - listen to your body and take it easy when the fatigue hits, try to keep a daily routine, eat 'properly' and take the time to get some exercise everyday (even a gentle, short walk counts as exercise). He assured me that the side effects will lessen once the body and mind has adjusted to taking the TKI again. 

Hope you're feeling much better very soon

Lynette

Hi,

       My results were 0.033 and are now 0.25, I'm getting another bcl abl test at the end of the month, when I will have been back on glivec for 2 months, so hopefully the figure improves or doesn't go up.

Hi Kenny,

Good to hear you have another test coming up - that is a jump that is near enough to a log change, so definitely something to keep a close eye on. When I took a break from TKIs for just two weeks, my BCR-Abl ratio tripled. Things can move quick enough. When I went back on them, things moved down again fairly fast so hopefully the same will happen to you.

Please let us know what the next result says. Hopefully now you are back on imatinib it'll show a nice drop and can put your mind at rest.

David.

Hi, 

     My latest bcr abl test result stayed at 0.25.

I'm getting another test in January, hopefully the result improves by then.

 

Kenny

Hi Kenny,

Since the last result was quite a big jump after some time off taking TKIs, its good to see this has settled. Hopefully at your next test you'll see a really good improvement in response. 

Best of luck!

David.