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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
MartinZA on 28 June 2017

Category: Side effects

Replies: 4

Last updated: 4 July 2017

Neck lump issues
by johnw1001 (Jul 4)

Hi Martin,
I may be able to add to what you are experiencing in that I commenced Glivec in 2007 and in 2012 experienced a swollen lymph node "a small posterior triangle lymph node but there was

by MartinZA (Jun 30)

Dear Sandy and Philip
First, thank you once again for replying to my posting and for the very good advice you gave. Sandy, I decided to go under the knife after all because I felt it was the

by Philip (Jun 30)

Hi Martin: I have been on dasatinab for a little over 8 years now. I did have some sensitivity in the lymph node areas especially under my arms. I've not experienced the degree which you have

by sandy craine (Jun 28)

Martin,
This must have been really worrying for you and it is good that you didn't have to wait around too long for the results of your biopsies. Very reassuring that they were negative and I assume
Category: Side effects

Replies: 4

Last updated: 4 July 2017
David Fitz on 4 July 2017

Category: Uncategorised

Replies: 0

Last updated: 4 July 2017

Art exhibition near Old St (London) by CML patient in aid of Bloodwise.
by David Fitz (Jul 4)

I might pop along after work and thought others in London might be interested. 50% of all sales go to Bloodwise.
http://curiousdukegallery.com/exhibition_show.php?ExhibitionID=125
Category: Uncategorised

Replies: 0

Last updated: 4 July 2017
David Ryner on 28 April 2017

Category: Uncategorised

Replies: 2

Last updated: 29 June 2017

Ponatinib: NICE publish their final recommendations
by David Ryner (Jun 29)

NICE have published final guidance on ponatinib today (see link below). The recommendation is as I posted in late April since there was not a successful appeal or indeed an appeal against that

by chrissie (Apr 28)

More good news. Thanks for posting, David. It does feel comforting to have 5 TKIs these days.
best
Chrissie

by David Ryner (Apr 28)

NICE have today published their final recommendations for ponatinib for adult patients being treated in the NHS in England.
We are very pleased to report that they have modified their initial
Category: Uncategorised

Replies: 2

Last updated: 29 June 2017
Naj on 24 June 2017

Category: Uncategorised

Replies: 6

Last updated: 29 June 2017

Newly diagnosed and sharing some experience with Tasigna
by cmljax (Jun 29)

I'm not even close to the 38 group (I am 64), but have been on Tasigna since Dx in October 2016. Response has been very rapid - MMR in 80 days; >MR 4.5 in 6 months. Side effects have been

by Naj (Jun 27)

Davide and Harsh
Thank you very much for sharing your experience . Knowing that people similar to my age are managing the CMl with positive results provides me good hope.
Good luck to all of us.

by Harsh (Jun 26)

Hi ,

I am 38 years old,diagnosed in last year NOV end and immediately started on nilotinib 400mg 2 times/day.I was dx with 31% blast cells ,345000 wbc count,45%bcr- abl.My prospects very

by davewell (Jun 26)

Hello!
Here's another member of the "diagnosed at 38" club, writing from Italy; not the best club to be in, but it's nice to have company :)
I was also diagnosed last year, April 2016; blasts at 5
Category: Uncategorised

Replies: 6

Last updated: 29 June 2017
markmcd on 25 June 2017

Category: About CML

Replies: 3

Last updated: 2 September 2022

Educational resources for children
by sandy craine (Jun 28)

Hi,
This is an interesting issue and I will attempt to highlight this as an unmet need at a meeting I will attend on Monday with CML clinicians- including one clinician who treats children with CML

by markmcd (Jun 27)

Thanks for taking the time to reply David - much appreciated - I'll keep on searching. Best regards, Mark

by David Fitz (Jun 26)

Hi Mark,
That's a great question. I am not sure there are many child-friendly materials around. Most of the material is geared towards adults, as they're the main patient group. The stuff that takes

by markmcd (Jun 25)

Hi everyone. I realise I may be going over old ground, but haven't managed to find anything suitable by searching the site or the web. I was diagnosed with CML 3 years ago (I have the T315i mutation
Category: About CML

Replies: 3

Last updated: 2 September 2022
ayaz ahmad magray on 27 June 2017

Category: Uncategorised

Replies: 1

Last updated: 27 June 2017

Reduced dose
by David Fitz (Jun 27)

I take Sprycel, and my counts a couple of years ago were very similar to your ones, thought your platelets were lower than mine.
But don't worry too much: WBC of 4.5 is within the normal range, if

by ayaz ahmad magray (Jun 27)

After taking sprycel from last 15 days with one day 50 mg and other day 100 mg. My count is hb 12.10 wbc 4500 and platelets 100000 and my doctor advise me to take now full dose 100mg each day. Any
Category: Uncategorised

Replies: 1

Last updated: 27 June 2017
iffat on 6 April 2017

Category: Uncategorised

Replies: 5

Last updated: 17 June 2017

slow response to imatinib
by David Fitz (Jun 17)

That's good news. Sometimes slow and steady can win the race!

by iffat (Jun 14)

hello David

i got my latest pcr and it was 0.6 pretty good enough to stay on imatinib.

Thanks for your support
Iffat

by EvaH (Apr 18)

I had a sub optimal response at 3 months (we switched to Tasigna but changed back to Imatanib after a few weeks due to eye bleeds) and a very good one by 6 months.
From a video on this forum, I

by iffat (Apr 6)

hi David

thanks for replying, your answer was very clear and relaxing that i am gonna do it one day :)

i will ask my dr about the international scale next time and send you my latest pcr
Category: Uncategorised

Replies: 5

Last updated: 17 June 2017
alliswell on 21 April 2017

Category: Blood tests

Replies: 8

Last updated: 14 June 2017

18th month PCR RESULT , A Blip and Next Step ?
by David Fitz (Jun 14)

Congratulations - that result is well into MMR territory! Excellent news.
David.

by alliswell (Jun 13)

i got the last result for PCR test today. and i guess the test of april was just a technical or lab sourced raise . not so good but definetely not bad. we are on track again .
29/05 gave sample for

by alliswell (May 23)

we made a small change to our program .
23/05 meeting with doctor (was today)
23/05 or 29/05 PCR test - as soon as i convince my mom to go to hospital again.
12/06 PCR Result and

by alliswell (Apr 28)

david hi and thanks again
yeap , your last message summarize all our history and dilemma.
not having MMR ( 18 month or later ) but if your trend is going down this is not an issue . on the
Category: Blood tests

Replies: 8

Last updated: 14 June 2017