TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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annie t on 31 December 2016

Category: Side effects

Replies: 9

Last updated: 1 August 2017

Cramps
by Richard42 (Aug 1)

Cramps were one of the main imatinib side effects I had. Hands, feet and back. They were quite significant at first but over time they reduced to the extent they had essentially

by annie t (Jul 22)

Hi - Yes even I get cramps in hands, abdomen and back. Breasts cramps are reduced to a greater extend. Good that you have started exercising. It does help.
Regards
Annie

by EvaH (Apr 19)

Checked and Magnesium levels are fine. With a bit more weight lifting the hand cramps are not happening now, still a few pre-cramps on the old abs but prob due to non-usage also

by sandy craine (Apr 2)

Eva, you might want to check your magnesium levels and try supplementing with Mag. Sandy
Category: Side effects

Replies: 9

Last updated: 1 August 2017
annie t on 21 July 2017

Category: Blood tests

Replies: 4

Last updated: 30 July 2017

BCR-ABL
by annie t (Jul 30)

Hi Sandy,
I met with my main doctor and he mentioned that the lab has upgraded to IS scale and not to worry about my current percentage.
Regards
Annie

by sandy craine (Jul 29)

Hi Annie,
yes 3 months to wait for another PCR does seem a long time. Could you persuade your doctor that you are concerned and would like another PCR test now?
Sandy

by annie t (Jul 22)

Thanks Sandy for the response. Actually there is no change in the lab. Also rather last 3 were negative and since it is now .01 now I am more worried. Doctor did mention to have a test done after 3

by sandy craine (Jul 22)

Annie, don't worry as your BCR-Abl ratio are still pretty low. This change is from one test so could be an anomaly. Has anything changed such as the lab that did this latest test as opposed to the
Category: Blood tests

Replies: 4

Last updated: 30 July 2017
Daphne Lynn on 7 April 2017

Category: Blood tests

Replies: 10

Last updated: 29 July 2017

Conversion levels
by sandy craine (Jul 29)

HI Daphne,
If you already have cardiac issues then maybe nilotinib would be contraindicated? Please ask your clinician.
Sandy

by chrissie (Jul 26)

Hi Daphne
Sorry to be late in answering but I only just went onto this site. By now I guess you've had the clinic appt and made a decision regarding Dasatinib or Nilotinib. Both seem to have very

by Daphne Lynn (Jul 24)

Three months on and I'm picking up an old thread to avoid retelling my whole story...
...Moving on I have now been taking Imatinib since December and actually feeling very well - I really didn't

by chrissie (Apr 12)

Good news, Daphne. It does help to have confidence in your haem and I have found them to be excellent. Take his advice and have a good summer. It's the downward trend which is the most important
Category: Blood tests

Replies: 10

Last updated: 29 July 2017
Amit on 4 July 2017

Category: Uncategorised

Replies: 25

Last updated: 29 July 2017

My Story
by sandy craine (Jul 29)

Great news Chrissie.
Sandy

by Olivia (Jul 28)

Brilliant! I'm so happy for you, Chrissie.

by chrissie (Jul 27)

Hi Olivia
Just had my PCR emailed and since starting on 300mgs on June 21st and 3 months+ on generics I'm the lowest ever at 0.0025 so am very happy. Just hope it keeps down as it's such early days

by Olivia (Jul 20)

Hi Chrissie
Congratulations - and I hope the test goes well. I'd forgotten about puffy eyes until I saw the Spirit2 nurse at my last check-up - I hadn't seen her for some time and she
Category: Uncategorised

Replies: 25

Last updated: 29 July 2017
HelenS on 24 July 2017

Category: Drug-drug interactions

Replies: 1

Last updated: 24 July 2017

Antibiotics and Imatinib
by David Fitz (Jul 24)

Hi Helen,
Antibiotics and TKIs are routine. However a cold is a viral infection, which antibiotics would have no effect on. If your doctor thinks it might be a bacterial infection they may prescribe

by HelenS (Jul 24)

I have been taking Imatinib for 6 months. I am pretty sure I now have sinusitis as a result of a lingering cold. Hope to get to GP tomorrow. But can anyone tell me if it's OK to take antibiotics
Category: Drug-drug interactions

Replies: 1

Last updated: 24 July 2017
HelenS on 21 July 2017

Category: About CML

Replies: 2

Last updated: 24 July 2017

Patient Conference
by HelenS (Jul 24)

Many thanks for the info. Helen

by sandy craine (Jul 22)

As the moment the UK Patient conference will take place a couple of months later than ususal... i.e. in mid January 2018 rather than in Oct/November this year. This is because the clinicians

by HelenS (Jul 21)

I wondered if anyone knew if there was going to be a UK CML Patient Conference like the one I saw on this site that took place last year in Manchester ?
Category: About CML

Replies: 2

Last updated: 24 July 2017
Amit on 22 July 2017

Category: Uncategorised

Replies: 0

Last updated: 22 July 2017

Multi Vitamins
by Amit (Jul 22)

Just wanted to find out while we are on Imatinib whether there would be any absorption issues if we take Aloe Vera based Multi.Vitamins ? I take a few of them which include Iron and so i was
Category: Uncategorised

Replies: 0

Last updated: 22 July 2017
zara786 on 17 July 2017

Category: Uncategorised

Replies: 6

Last updated: 20 July 2017

CML and pregnancy
by sandy craine (Jul 20)

Hi Zara,
City Hospital is one of the UK major centres for CML. If your white count does get higher than 80 you might want to ask if your doctors if they can control the counts by a procedure

by zara786 (Jul 18)

I live in Lincolnshire and I'm being treated in City hospital in Nottingham.

by David Fitz (Jul 17)

I imagine those infections might be interferon injections - if it is, it’s nothing to be scared of. Interferon has a long history and is well understood. So long as you are frequently monitored, and

by zara786 (Jul 17)

The video link you sent dose not open
Category: Uncategorised

Replies: 6

Last updated: 20 July 2017
Brynhenefield on 15 July 2017

Category: Side effects

Replies: 2

Last updated: 18 July 2017

Nausea/Vomiting & Intestinal Cramping
by johnw1001 (Jul 18)

Hi Bryn,
May I make a few observations but perhaps I really dont know the complete answer.It might be useful to revue when the imatinib is taken and with what type of food.There have been threads on

by David Fitz (Jul 15)

My gosh Bryn, that sounds awful.
In all honesty, the way I would manage that situation would be to demand to switch to another TKI. It seems, from what you have said, that imatinib is causing

by Brynhenefield (Jul 15)

Hi everyone!
My dad was diagnosed with CML in April 2017. He has been on 400mg imantinib since late April. Since starting he has struggled with severe vomiting and wretching. It happens
Category: Side effects

Replies: 2

Last updated: 18 July 2017
ian hinley on 6 October 2016

Category: Treating CML

Replies: 9

Last updated: 18 July 2017

Hopefully exciting times ahead - Sprycel dose reduction!
by ian hinley (Jul 18)

9 Month UPDATE: Have just had third 3 month test results since halving in September 2016 and still at 0.004 so MMR 4.5 still!! This still proves proves that half the dose (50mg Sprycel) is

by Philip (Jun 5)

HI Ian: I joined CML Support about a year and one month ago. I posted for the first time yesterday. As to your dosage reduction on Sprcyel, here is what I have to say.
I was

by David Fitz (Apr 13)

Ian,
That's great ... and assuming an IS calibrated result 0.003% is plenty more than MMR (MR3), it's MR4.5 - an excellent result! Congratulations.
David.

by ian hinley (Apr 13)

6 Month UPDATE: Have just had second 3 month test results since halving in September 2016 and still at 0.003 so MMR. Really chuffed as this proves that half the dose is keeping everything in
Category: Treating CML

Replies: 9

Last updated: 18 July 2017
sprycml on 15 July 2017

Category: About CML

Replies: 2

Last updated: 15 July 2017

How frequent are bone marrow biopsies?
by johnw1001 (Jul 15)

Hi there,
Just to add to what David has said it appears that the preference for undertaking a bone marrow biopsy in the early stages of CML treatment is about measuring the cytogenetics and the

by David Fitz (Jul 15)

There's no hard and fast rule. Many doctors are not taking bone marrow biopsies at all, even at diagnosis, and rely on PCR results from peripheral blood.
Some others adhere to older standards which

by sprycml (Jul 15)

I'm at one-year past diagnosis, and just wondering - how often do they tend to perform bone marrow biopsies? My doctor says he may or may not at the one year mark depending on my PCR levels.
Category: About CML

Replies: 2

Last updated: 15 July 2017
rholtslander on 10 July 2017

Category: Blood tests

Replies: 5

Last updated: 15 July 2017

I am having difficulty understanding my PCR results.
by rholtslander (Jul 15)

Thanks. It didn't make sense to me and I had speculated whether it was a typo or a weird bullet point kind of thing.
I will definitely talk to my Dr. about my results and whether they're IS or

by David Fitz (Jul 15)

You can't go negative for a BCR-Abl PCR test. 0 is as low as it goes, whether on the international scale or not.
Perhaps it was just a typo, or someone using the "-" symbol as a sort of bullet point

by rholtslander (Jul 15)

Thank you so much David and Sandy.
I had a confirmed diagnosis in March from a Bone marrow test. I live in Saskatchewan, Canada. I'm not certain if they use the international system or not as all

by sandy craine (Jul 11)

Hi and welcome,
I second David's remarks... you are right on track for a good response to therapy. You can ask your clinician if your PCR results are from a Lab that is tied to the
Category: Blood tests

Replies: 5

Last updated: 15 July 2017
Justine on 15 July 2017

Category: Blood tests

Replies: 1

Last updated: 15 July 2017

3 mo from diagnosis PCR test results
by sprycml (Jul 15)

MMR means < 0.1% Bcr-Abl. Don't sweat it, most people aren't at MMR until 9-12 months on TKIs, or even longer. Some never quite hit MMR but stay at very low and relatively safe

by Justine (Jul 15)

Just got my test results. What does this mean? Doctor appointment on Thursday to ask him.
BCR/ABL1 of b3a2 Type: 6.82% International Scale Ratio:
5.6606%
MMR: No
Since it says MMR no, I am
Category: Blood tests

Replies: 1

Last updated: 15 July 2017
David Fitz on 5 July 2017

Category: Uncategorised

Replies: 2

Last updated: 14 July 2017

Changes to CML Support web site
by David Fitz (Jul 14)

That's a good idea - I'll add it to the list, but can't make any promises and I'm not sure how difficult (or easy) that might be to implement.
Thanks for the idea, it's really helpful to get

by grells (Jul 6)

Can you make it so we can access our posts from our profiles - rather than having to scroll through everything on the forum? Also that you can access everyone's posts from their profiles.

by David Fitz (Jul 5)

Over the coming days, weeks and months, we are making some changes to the CML Support web site. We'd greatly appreciate your feedback on changes we are making, or ideas you might have to improve the
Category: Uncategorised

Replies: 2

Last updated: 14 July 2017
wshi2001 on 10 July 2017

Category: Uncategorised

Replies: 2

Last updated: 13 July 2017

Does indigestion problem affect efficacy of Tasigna?
by wshi2001 (Jul 13)

Thanks Sandy, much appreciate for your advice. I have tried dasatinib previously for 3 months, unfortunately it gave me severe palpitation,especially at night. So far nilotinib

by sandy craine (Jul 11)

Hi William,
Normally 2 hrs is long enough for a meal to be digested. When you say you still feel full even after 2hrs, this does not necessarily mean you have not digested enough of your last meal

by wshi2001 (Jul 10)

Hi, everyone,
I saw a recent thread in forum about the fasting of Tasigna, I have rather a slightly different problem. About 10 months ago, I have switched from Glivic to Tasigna, since
Category: Uncategorised

Replies: 2

Last updated: 13 July 2017
ayaz ahmad magray on 12 July 2017

Category: Uncategorised

Replies: 1

Last updated: 12 July 2017

10 weeks of dx
by sandy craine (Jul 12)

Genetic Tests used at diagnosis and in the first months of TKI therapy: Some sort of genetic testing will be done to look for the Philadelphia chromosome and/or the BCR-ABL1 gene. The

by ayaz ahmad magray (Jul 12)

After taking sprycel from diagnosis 10 weeks before from today my blood counts now improves hp 12.5 tlc 7000 and platelets 128000. What test is required after 3 months of diagnosis.
Category: Uncategorised

Replies: 1

Last updated: 12 July 2017
Nishant Parashar on 8 July 2017

Category: Organising your life

Replies: 1

Last updated: 9 July 2017

Smoking
by David Fitz (Jul 9)

Hi Nishant,
Quitting smoking is obviously going to be good for your health in general - but there also seems to be at least some evidence that smoking may increase the risk of CML progression. One

by Nishant Parashar (Jul 8)

I'm fairly new to this. I was diagnosed in June, 2015. I am gleevec (the counts keep changing from 400mg to 600mg lately, currently on 600mg).
I'm a smoker, but i have quit smoking lately but my
Category: Organising your life

Replies: 1

Last updated: 9 July 2017
Loki on 7 July 2017

Category: Uncategorised

Replies: 2

Last updated: 8 July 2017

just saying Hi.
by Loki (Jul 8)

Nigel
Thanks for the reply. My numbers have been good or better, I have been working at it for a long time. This surgery will be spinal and very invasive, I

by nigel (Jul 7)

Hi thanks for the post. Having been on treatment is I assume your PCR results are hopefully good and low. If they are and have been for awhile at no reason to fear coming off the meds, indeed, you

by Loki (Jul 7)

Just joined the website today and have been dealing with CML for 10 years. Walking a fence on an upcoming back surgery that will take me off Gleevec for a while. Not
Category: Uncategorised

Replies: 2

Last updated: 8 July 2017
Vmexican1 on 1 July 2017

Category: Organising your life

Replies: 2

Last updated: 6 July 2017

Recently diagnosed
by Thompsog (Jul 6)

Hi Victor, I've just recently been diagnosed (3 weeks ago today), I started Imatinib tablets 2 weeks ago and so far so good, my blood test showed a reduction in my White Blood Cell by half in

by sprycml (Jul 2)

Hi Victor -
Welcome to the forums!
The short answer is, maybe. Right now standard practice is lifelong medication, but many tests are underway at the moment which seem to suggest that a

by Vmexican1 (Jul 1)

Hello, my name is Victor i literally was diagnosed the 27th of June. My most pressing concern is, am I doomed to take pills forever
Category: Organising your life

Replies: 2

Last updated: 6 July 2017
sandy craine on 27 June 2017

Category: Uncategorised

Replies: 3

Last updated: 6 July 2017

Your (first) name in lights?
by grells (Jul 6)

Hi there. I have just emailed the organisers as I'd be happy to take part. I might even go along since it's just down the road!

by sandy craine (Jun 29)

Hi David,
I'll add you to the list.... so far 3 so 7 places to fill. I can update that the organisers have now said that it is not essential that people need travel to London to have their

by David Fitz (Jun 27)

Sandy,
I'd be happy to, and of course already in London. But if we find more people than spaces, I'll happily drop off.
David

by sandy craine (Jun 27)

Janssen, a large pharmaceutical company with an interest in blood cancers, are supporting a public awareness event about this group of cancers at a major London visitor attraction at the end of this
Category: Uncategorised

Replies: 3

Last updated: 6 July 2017