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Philip on 4 June 2017

Category: Uncategorised

Replies: 0

Last updated: 4 June 2017

CMR Response and Discontinuation of Treatment
by Philip (Jun 4)

Hi All! Here’s my story.
I was diagnosed with CML on 23 February 2009 at age 48. I was in the accelerated phase well on my way to the acute phase. My WBC was, 354,000.00.
Category: Uncategorised

Replies: 0

Last updated: 4 June 2017
micheller on 20 May 2017

Category: Uncategorised

Replies: 1

Last updated: 3 June 2017

side effects of glivec
by sandy craine (Jun 3)

Hi,
I am not sure that loss of feeling in both legs and dizziness could be attributed to imatinib, especially as such symptoms could be caused by other health issues. I suggest you contact

by micheller (May 20)

I have been on glivec almost five years and recently lost the feeling in both legs it has returned however I am experiencing dizzy spells. Has anyone else had these experiences on glivec?
Category: Uncategorised

Replies: 1

Last updated: 3 June 2017
David Fitz on 25 May 2017

Category: Uncategorised

Replies: 1

Last updated: 25 May 2017

CML Horizons conference 2017: call for questions
by nigel (May 25)

Thanks David, looking forward to it. Additionally, I have heard today Professor Jane Applerley from the Hammersmith will also be speaking on fertility and a couple of other topics.
As David

by David Fitz (May 25)

Nigel Deekes and I are both attending the CML Horizons conference this year, which takes place this weekend (26-28th May). CML Horizons is a conference for patient advocacy groups (like CML Support
Category: Uncategorised

Replies: 1

Last updated: 25 May 2017
Steven Davies on 17 April 2017

Category: Getting help

Replies: 1

Last updated: 23 May 2017

Hammersmith CML Patient Carer Group Meeting Saturday 10th June 2017
by EvaH (May 23)

Hi
ID Like to attend, as I'm passing through London ...I sent an email but didn't get a response yet.
Thanks

by Steven Davies (Apr 17)

EVERYONE WELCOME to the LEUKAEMIA PATIENTS SUPPORT GROUP, The CATHERINE LEWIS CENTRE Reception Area (entrance at rear of main Hospital)
HAMMERSMITH HOSPITAL,
Du Cane Road,
London, W12 OHS.
Category: Getting help

Replies: 1

Last updated: 23 May 2017
Mitraa on 20 May 2017

Category: Organising your life

Replies: 2

Last updated: 21 May 2017

getting back to 'normal'?
by Mike B (May 21)

Hello Mitraa,
Having just been diagnosed 6 months ago and with a 2 year old of our own I understood this is a huge shock. I think David gives a great response. Education about how the medicine works

by David Fitz (May 20)

Hi Mitraa,
I think in the early days - and three months since diagnosis is certainly in the early days - it's totally normal to be stressed out quite a lot! I think it would be a bit strange to

by Mitraa (May 20)

hello to every one
im so happy to hear success stories from people trying to fight CML.
my husband was diagnosed with CML 3 months ago and since then i really try to manage my stress
i have a 3 year
Category: Organising your life

Replies: 2

Last updated: 21 May 2017
Mike B on 16 May 2017

Category: Blood tests

Replies: 4

Last updated: 18 May 2017

Stay course or switch TKI
by David Fitz (May 18)

Sounds like a sensible plan. Best of luck!

by Mike B (May 18)

Thanks for the comments. After meeting with my oncologist we are staying on Imatinib for now. She did say a case could be made to switch. We will check again in 6 weeks and again at my 9 month mark

by Olivia (May 17)

Hello and welcome, Mike
Personally, if you are doing OK on imatinib - and it sounds as if you are - I'd stick with it. I've been on it nearly 8 years now and have had no problems apart

by David Fitz (May 17)

Hi Mike,
There's no concensus on this really. Some studies suggest that reaching 10% (on the International Scale) by 3 months is desirable, and correlated with good outcomes. Others are of the
Category: Blood tests

Replies: 4

Last updated: 18 May 2017
Justine on 11 May 2017

Category: Treating CML

Replies: 5

Last updated: 12 May 2017

Newly diagnosed
by Justine (May 12)

Thank you, David. I just met a lady who "tolerated" Gleevec for three years but was miserable. She switched to a different one and had a much better experience after that. It is good to

by Justine (May 12)

And good luck to you! And to all of us! :-)

by Justine (May 12)

Thanks, I appreciate your words. Justine

by David Fitz (May 11)

Hi Justine,
As already mentioned, these are not uncommon side effects. For many people, they pass in their own time. For others, they don't.
I'm one of the others. Imatinib (Gleevec) didn
Category: Treating CML

Replies: 5

Last updated: 12 May 2017
David Fitz on 10 May 2017

Category: Treating CML

Replies: 0

Last updated: 10 May 2017

New Generic Imatinib Leaflet
by David Fitz (May 10)

CML Support have recently published a new leaflet on the topic of generic imatinib.
We will distribute this at patient CML clinics, so reaching a much wider audience of patients than are just
Category: Treating CML

Replies: 0

Last updated: 10 May 2017
Walkereyles on 27 April 2017

Category: Side effects

Replies: 4

Last updated: 5 May 2017

Bone Pain
by johnw1001 (May 5)

Hi Garry,
Yes have had a number of episodes like this and have been on Glivec for over ten years.First some years ago it was drug interaction Glivec and antibiotic Ciprofloxacin but it

by David Fitz (May 4)

Hi Garry,
Though of course as others point out, not every ailment can be CML or TKI related I do have some experience in this regard that was very much related.
A few years back, when I was

by Olivia (May 4)

I was suffering from sciatica, too, and my GP recommended Pilates as an alternative to physio. For me, it works a treat - and I didn't have the 12-week wait for NHS physio which is the

by sandy craine (May 3)

Hi Gary and welcome,
I am not sure that changing TKI from imatinib to dasatinib would effect your replacement hip. TKIs work in a very selective way and only target the abnormal cells by shutting
Category: Side effects

Replies: 4

Last updated: 5 May 2017
patriciamanning on 27 April 2017

Category: Uncategorised

Replies: 3

Last updated: 4 May 2017

new to the Forum
by johnw1001 (May 4)

Hi Patricia,
Regarding your husbands experience of a 600mg imatinib dose and musculo- skeletal issues with muscular pain my history and situation might be of some interest and use.
First you do not

by sandy craine (Apr 30)

Hi Patricia,
Firstly congratulations to your husband for maintaining his excellent response to imatinib. However, I do agree with David's point about 600mg being his dose over such a long

by David Fitz (Apr 27)

Hi Patricia,
Congratulations to your husband for maintaining all the zeros!
600mg of imatinib is a high dose. The usual dose is 400mg. Perhaps it's worth talking to his doctor about

by patriciamanning (Apr 27)

Hi
My husband wad diagnosed with CML in July 2002 and was lucky enough to recieve Glivec straight away. All these years later he is still taking 600mg daily and PCR testing is showing all the
Category: Uncategorised

Replies: 3

Last updated: 4 May 2017
chrissie on 24 April 2017

Category: Uncategorised

Replies: 3

Last updated: 25 April 2017

Different generics
by chrissie (Apr 25)

Hi Margaret
I'm hoping to go down to 300mgs in June. Pleased things are going well for you,
best
Chrissie

by MRB (Apr 25)

Chrissie - thank you for the reassuring information on generics from H@H. I received Intrapharm first, then Wockhardt! I have been reduced to 300mg - the 100 mg generic tablets are minute- much

by chrissie (Apr 24)

Just had an answer from both my haematologist and the cancer pharmacist at the hospital. What amazing care!!
All OK with either generic - and for those with H@H they apparently will send one of

by chrissie (Apr 24)

I have been taking Imatinib 400mgs from Wockhardt for the past month - my first month on the generic, and all has been fine. Healthcare at Home have just delivered my next month's supply and on
Category: Uncategorised

Replies: 3

Last updated: 25 April 2017
carmeplas on 18 April 2017

Category: Side effects

Replies: 4

Last updated: 25 April 2017

Generic IMATINIB
by carmeplas (Apr 25)

thank you. It is being very useful, since some docs does not believe that generic may doing that.

by carmeplas (Apr 25)

It is nice to see, because our doc... does not care so much about the fact that some generic give harder troubles to patients...

by iffat (Apr 23)

i used gleevec for six months then switch to teva imatinib which is a generic drug.it seems that the side effects get more noticible for me,more puffy eyes,joint pain which i never had with gleevec.

by EvaH (Apr 19)

I had more nausea on Veenat, which is an indian generic, having taken imatanib before. I tend to like Sandoz imatanib over Teva, not sure why really...Zentiva Imatanib tabs are quite large for some
Category: Side effects

Replies: 4

Last updated: 25 April 2017
Jyellak on 12 April 2017

Category: Blood tests

Replies: 6

Last updated: 23 April 2017

Question about PCR plateau
by cmljax (Apr 23)

By the way, if you stay at MMR or better, you will most certainly die from something other than CML. Since you are better than MMR and PCR numbers continue to decline, why switch? It

by cmljax (Apr 23)

As long as your PCR's continue to improve, it would be premature to switch medicine and take on a whole new side effect profile. The newer TKI's (Tasigna and Sprycell) are stronger and

by EvaH (Apr 19)

I've had a very quick response so I cant really say much but have you watched this video?
http://www.cmlsupport.org.uk/videos/how-should-cp-phase-cml-management-b...
I found it very informative

by Jyellak (Apr 13)

Sorry I made a typo it's a 0.126 for the April number. Thank you for answering
Category: Blood tests

Replies: 6

Last updated: 23 April 2017
Greetje on 21 April 2017

Category: Treating CML

Replies: 2

Last updated: 23 April 2017

reducing dosage within a year after diagnose
by cmljax (Apr 23)

See my response to the post titled
Have you reduced your dosage due to deep response? Share your experience

by nigel (Apr 21)

First of all well done on some great results and the speed they have come, really good. A couple of points I would make; first of all it is a little early for does reduction in my view as yet,

by Greetje (Apr 21)

Hi, this is my first post. I'm diagnosed in october 2016. Start with Imatinib 400 at 22%, after 3 months 0.27%, now after 6 months 0.012%. I would like to ask my docter to reduce my
Category: Treating CML

Replies: 2

Last updated: 23 April 2017
Stacy.Langdon on 15 April 2017

Category: Treating CML

Replies: 2

Last updated: 23 April 2017

Diagnosed with CML @ 6 weeks pregnant
by Stacy.Langdon (Apr 23)

Update! 4 days interferon alpha 2b treatment complete and so far zero side effects other than some fatigue (which could also possibly be related to growing a human!! Feeling like myself and excited

by EvaH (Apr 19)

Welcome to the forum - keep the updates coming and I'm sure some of the pre-imatanib patients here will be able to relate the the interferon treatement.
All the best and stay positive!

by Stacy.Langdon (Apr 15)

Hi All!

New to the forum. Last week I was diagnosed with CML at 6 weeks pregnant. Routine Prenatal Bloodwork detected a high whiteblood cell count. Thankfully for a group of fast acting
Category: Treating CML

Replies: 2

Last updated: 23 April 2017
Avril Dailly on 19 April 2017

Category: Uncategorised

Replies: 4

Last updated: 21 April 2017

Wheat intolerance
by Avril Dailly (Apr 21)

Thanks Richard. Have been on imatinib since June and had terrible problems from the start. Was told it was side effect of treatment. However had macaroni at lunch one day followed by urgent need and

by Richard42 (Apr 21)

Hi Avril
Regarding diarrhoea, I experienced this - or at least "urgency" - while I was on imatinib. Usually a few hours after taking it. I did not experience it before and I have

by Avril Dailly (Apr 21)

Has anyone tried cutting out wheat to see if it stops their diarrhea?

by David Fitz (Apr 19)

Hi Avril,
No, I haven't and I haven't heard this from anyone else.
It is easy to blame ailments on CML or a response to TKIs. And while this is often right, and sometimes very serious
Category: Uncategorised

Replies: 4

Last updated: 21 April 2017
remw on 23 January 2017

Category: Treating CML

Replies: 4

Last updated: 21 April 2017

Destiny trial - successful so far
by Richard42 (Apr 21)

I had a couple of blips during the trial but they always went away, and some, when reviewed, were wrong anyway. Most peculiar - my consultant said they may have been "artefact".
I

by remw (Apr 19)

Just read my post and realised I did actually mean one year on half dose. I have about another 5 months left to go on the trial off Imatinib. One very minor blip in the figures this month, but

by sandy craine (Feb 1)

Thanks for posting your update - it is very good to hear that your have managed to maintain TFR, and hopefully will continue to do so. It is also good to know that you felt so good on half dose TKI

by Richard42 (Jan 25)

Hi there
Congratulations on great results.
I was a bit puzzled by your trial schedule though - I'm also on Destiny but for me (and I thought, everyone), it's been 12 months on half dose,
Category: Treating CML

Replies: 4

Last updated: 21 April 2017
EvaH on 20 April 2017

Category: Side effects

Replies: 0

Last updated: 20 April 2017

Anemia research paper
by EvaH (Apr 20)

I've been reading up on anemia, as mine appears to be persistent. Although its thought to be "simply" a side effect of imatanib, this paper from Czech republic suggests that post
Category: Side effects

Replies: 0

Last updated: 20 April 2017
Lynette on 15 April 2017

Category: Uncategorised

Replies: 4

Last updated: 18 April 2017

Facebook
by EvaH (Apr 18)

Do check if closed groups show up on your profile ie your friends will certainly not be able to see your posts in the group on fb but they very well might be able to see that you are part of

by Lynette (Apr 15)

Thanks Nigel - thanks for processing my request so promptly - I'm in! LB

by Lynette (Apr 15)

Good morning Nigel, thank you for your reply - I'll search for the closed page and apply to join up. Have an awesome Easter, Lynette

by nigel (Apr 15)

Hi Lynette, there are several CML support groups on Facebook, most are “closed” meaning only members will be able to see what is posted, so most feel happy to perhaps be a little more
Category: Uncategorised

Replies: 4

Last updated: 18 April 2017
EvaH on 7 February 2017

Category: Side effects

Replies: 4

Last updated: 18 April 2017

Update on my eye issues and side effects with Veenat
by EvaH (Apr 18)

I've now had an avastin injection in both eyes, leftie about one month ago and rightie one week ago. Vision problems seem to have completely cleared in the left, I still have some residual in

by EvaH (Mar 9)

Thanks Sandy!

I have since learned that high blood counts cause VEGF a protein which leads to neovessel proliferation in the retina - basically the starving retina grows its own vessels but

by sandy craine (Mar 9)

Good luck with the eye issues Eva... Please let us know how this additional therapy works,
Sandy

by EvaH (Mar 4)

Update 2: We ve moved on from lasers to treat my retina problems to an off-label use of Avastin injection to kill off all the abnormal vessels at once. At least I hope it will!
Category: Side effects

Replies: 4

Last updated: 18 April 2017