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Judith on 3 October 2015

Category: Side effects

Replies: 8

Last updated: 17 October 2015

Dasatinib side effects
by Judith (Oct 17)

Hi Andey
Thank you so much for your helpful comments. My doctor has agreed to lower my dosage to 80mg so I hope this will ease my symptoms. In the meantime I will certainly ask about a '

by sandy craine (Oct 13)

Hi Andey, good to hear you have some control over your 'difficult friend' (what a great way to describe your therapy ;o). I do know of others who manage their disease very well with even

by Andey (Oct 11)

Hi. I understand just what you're going through. I have also been on Dasatinib for about the same amount of time, after about 1 year on Gleevec. Fluid buildup around the heart and lungs has been

by wshi2001 (Oct 10)

Hi, Judith,
I also took Dasatinib at one stage. But due to heart pumping caused breathless, I switched to Glivic. If your counts are low enough, say below 0.1%, I think you can try other
Category: Side effects

Replies: 8

Last updated: 17 October 2015
jd on 4 November 2007

Category: Uncategorised

Replies: 13

Last updated: 10 October 2015

How to overcome the nausea caused by the Gleevec
by wshi2001 (Oct 10)

hi, Darley,
I found this article http://www.ncbi.nlm.nih.gov/pubmed/19740393.
William

by wshi2001 (Oct 10)

Hi, Sandy and Darley,
Thanks for reminding me the drug interaction. I checked with my specialist, he said its Ok to take Nexium with Imatinib but not with Dasatinib. But I think you are

by Richard42 (Oct 2)

I discussed with no fewer than 4, including 3 at the Hammersmith and indeed one of them suggested omeprazole to deal with the acid reflux that imatinib caused me. All said it is fine.

by darley (Oct 2)

Quite different to the advice I was given by my Consultant.
Category: Uncategorised

Replies: 13

Last updated: 10 October 2015
David Ryner on 28 June 2015

Category: Uncategorised

Replies: 2

Last updated: 7 October 2015

There is to be a review of bosutinib by the Cancer Drugs Fund
by sandy craine (Oct 7)

I said I would report back to our members on the NHS England meeting, held on the 7th September and on any subsequent activity taken by the coalitions of the patient organisations CML Support Group

by karen (Jun 28)

I sincerely hope you are able to put forward the arguments you have listed here. I for one am grateful for Bosutinib as it was the last option available to me having failed Glivec, Dasatinib,

by David Ryner (Jun 28)

We were notified a few days ago of yet another review at the end of July of many of the drugs in the Cancer Drugs Fund (CDF).
Some people may recall the re-evaluation exercise at the end of last
Category: Uncategorised

Replies: 2

Last updated: 7 October 2015
johnw1001 on 6 October 2015

Category: Treating CML

Replies: 0

Last updated: 6 October 2015

Imatinib and mechanism of action of Resveratol on IM resistant cell lines
by johnw1001 (Oct 6)

Hi Sandy,
There was mention in the press recently of the potential benefits of dosing with Reservatol for patients in the early stages of dementia of the Alzheimer type.
Some years ago there
Category: Treating CML

Replies: 0

Last updated: 6 October 2015
david_a on 22 September 2015

Category: Treating CML

Replies: 5

Last updated: 5 October 2015

Off DESTINY
by darley (Oct 5)

Oh dear you have had a bad time!     Glad you can still see the black humour and there is something VERY ironic about breaking your arm at "Keep Fit".

by chrissie (Oct 5)

Just to update re destiny. My results are not good enough (having the 3rd blip of 0.1%pcr in month 11) to come off meds altogether. Decision taken with consultant in clinic 2 weeks ago. Whether i

by darley (Oct 5)

I've only just seen this post today. I'm SO sorry that you've not had the results you would have hoped for.   I'll be really interested in knowing what your

by nigel (Sep 23)

Hi David, really sorry to hear that you have had to come off destiny, sure all will go well and numbers will fall away again quickly. All the best and keep us posted   Nigel
Category: Treating CML

Replies: 5

Last updated: 5 October 2015
nithisevaguru on 5 August 2014

Category: Side effects

Replies: 14

Last updated: 5 October 2015

CML and Hip and Back pain
by sandy craine (Oct 5)

That's very interesting ... which method of supplementing with magnesium did you use?
Sandy

by Beekayporter (Oct 5)

I had extreme muscle cramps in my calves, feet and hamstring, turned out my magnesium levels were very low, doctor suggested supplements and after several months the cramps abated

by angela (Sep 9)

Hi Sandy I have been TKI free now for 15 months under Prof Jane Apperley

When I came off TKI's I had awful pains mainly in my toes/ feet , hands and fingers

Now it in my finger joints

by angela (Sep 9)

As a result of stopping, 111 of the 200 patients (56%) remained therapy-free after stopping TKIs , and 89 relapsed. Like in the STIM study, most relapses occurred very quickly within the first 6
Category: Side effects

Replies: 14

Last updated: 5 October 2015
sandy craine on 18 September 2015

Category: Getting help

Replies: 1

Last updated: 5 October 2015

Patient in Birmingham denied access to ponatinib
by darley (Oct 5)

Done.

That's shameful!

by sandy craine (Sep 18)

Some of you may like to join in and sign the following petition regarding the denial of access to ponatinib for a patient who does not qualify under the current rules of NHEngland. He has very
Category: Getting help

Replies: 1

Last updated: 5 October 2015
Phillip A on 17 September 2015

Category: Side effects

Replies: 5

Last updated: 5 October 2015

Stopped Glivec Destiny Trial
by darley (Oct 5)

Seems I can't think logically. Though I can count ;)
I've done a year on half dose but I have to continue on half a dose for 13 months and until my NEXT appointment when I

by chrissie (Sep 20)

First I must congratulate you, Barry. What a great result - long may it last for you on TFR. Hope the pains soon go.

I am currently just into month 12 on half dosage in DESTINY (and waiting

by Phillip A (Sep 18)

Many thanks for your comments Sandy.

I will try some Vitamin D3 supplement. Although I get plenty of sunshine as I am a keen vegetable gardener and beekeeper, it may still not be

by sandy craine (Sep 18)

Barry,

congratulations, that's really good news. Tonight I attended a conference in London where patient's TFR was being discussed. It seems that a lot of clinicians -throughout Europe- are
Category: Side effects

Replies: 5

Last updated: 5 October 2015
LS on 28 September 2015

Category: Treating CML

Replies: 4

Last updated: 5 October 2015

Transplantation
by darley (Oct 5)

That's how I first presented over 20 years ago.

by sandy craine (Oct 4)

Blast phase CML is very similar to the way Acute Leukaemia's behave. It is possible for Chronic phase CML to 'miss' the middle stage (accelerated phase) and develop into Blastic/acute

by LS (Sep 29)

Indeed, diagnosed 2 months ago with ALL Philadelphia +. Treatment with lighter chemo and Glivec. Blasts decreased rapidly to 0.11% but then, some 3 weeks ago a high level (some 35% ) of Philadelphia

by sandy craine (Sep 28)

Hi, from what you say your friends initial disease with CML went undiagnosed? Or was he diagnosed with Ph+ ALL? I assume he will now be treated with high dose chemotherapy to get rid of the
Category: Treating CML

Replies: 4

Last updated: 5 October 2015
Bmckenna on 10 August 2015

Category: Treating CML

Replies: 6

Last updated: 5 October 2015

Newly diagnosed cml- reposted from out of date thread below
by darley (Oct 5)

Don't be alarmed by stories of what WILL happen and how you WILL feel. Frankly it's the reason I never joined support groups. I strongly believe attitudue is

by Beekayporter (Oct 5)

I have really bad joint and bone pain, like you arms, hands but worse in the lower leg area, feels like deep bone pain. Doctor prescribed Tramadol 4 times a day, it really works. Hang in there, the

by Bmckenna (Sep 6)

Hi David, Kimberly and Olivia,

I'm still trying to figure out how to find my comments and peoples replies. Lol! I just saw your replies and wanted to say thanks!!! I have so many questions and

by Olivia (Aug 13)

Hi Kimberley
I've been taking imatinib for nearly 6 years now. I was 66 when I was diagnosed, and, like your mum, have grandchildren and want to see them grow up. So far, I'm managing that, and hope
Category: Treating CML

Replies: 6

Last updated: 5 October 2015
Frenchguy on 29 September 2015

Category: Uncategorised

Replies: 2

Last updated: 2 October 2015

Change in therapy, still side effects but better response!
by sandy craine (Oct 2)

Hi Francis,
Thank you for updating us on your experiences with changing therapy. I know you have suffered high levels of pain since the start of your journey, and so I am really glad to hear you

by Lucas (Oct 1)

so happy for you, francis!!! I told you, man!! You did it!!! now it's time to celebrate and live your life!!!! congratulations!

by Frenchguy (Sep 29)

Hello everyone,
It has been a long time that I had not posted on cmlsupport, the new website looks very nice.
I was diagnosed on april 2014, after several months on supplying a lot of doctors (GP,
Category: Uncategorised

Replies: 2

Last updated: 2 October 2015
Importtek on 2 October 2015

Category: About CML

Replies: 3

Last updated: 2 October 2015

Hello recently diagnosed
by sandy craine (Oct 2)

Hi, welcome to this forum where you will find lots of support from people who, like you, are being treated with TKI therapy. I am sure it will take a while for you to come to terms with your

by darley (Oct 2)

And I'm one of the rare ones.... diagnosed in the "olden days" when treatment options were severely limited. 21 years ago! Believe me the first 7 years

by Olivia (Oct 2)

Hello
I'm glad you have found this site, and hope it helps you as much as it helped me (and continues to help). I was diagnosed nearly 6 years ago - and I'm still here, enjoying seeing

by Importtek (Oct 2)

I am 45 yrs old and a month ago got ill. Was diagnosed as mono but wbc were 29,000 and after a few days of testing went up to 35,000. Hematologist study showed cml. They have started me on sprycel
Category: About CML

Replies: 3

Last updated: 2 October 2015
Ndb on 25 September 2015

Category: Reproductive health

Replies: 0

Last updated: 25 September 2015

Autism
by Ndb (Sep 25)

My husband was on gleevec for several years we had a son in 2011 perfectly healthy later diagnosed with autism. Anyone else have this experience?
Category: Reproductive health

Replies: 0

Last updated: 25 September 2015
David Fitz on 15 September 2015

Category: Blood tests

Replies: 9

Last updated: 24 September 2015

Good news, but I'm a bit confused!
by Lucas (Sep 24)

great news, david!! congratulations!!

by David Fitz (Sep 20)

Haha - I'm the same. If I can't control it, I don't worry about it too much.
But at the same time, to temper my own expectations I don't get carried away with thing (that's what I mean about

by darley (Sep 17)

But if you're a natural pessimist it could stop that ;)
I'm in the camp of never wanting to worry about what I can't control and effect. Tending to optimism and always eager for good news though

by David Fitz (Sep 16)

I have my oncologist's email address and might drop her a note. But to be honest it wouldn't change what she'd say to me in a couple of months at the next clinic. I'm pretty patient :)
Category: Blood tests

Replies: 9

Last updated: 24 September 2015
RodM on 24 September 2015

Category: Treating CML

Replies: 2

Last updated: 24 September 2015

Guardian Article - Cancer Drug costs in the UK
by Lucas (Sep 24)

here in brazil dasatinib is cheaper than glivec for market reasons. we have only imatinib (generic one) for first line therapy here and dasatinib is the most used second line therapy here.

by David Fitz (Sep 24)

My understanding was that Dasatinib (100mg) was available to the NHS at a cost of £2504.96p per 30 day cycle (from section 3.4 here), which is over £30,000 a year. That's still less

by RodM (Sep 24)

http://www.theguardian.com/business/2015/sep/23/uk-cancer-patients-being...

I didn't realise that Dasatinib in Brazil is sold at less than half the cost of the UK, or that it's over
Category: Treating CML

Replies: 2

Last updated: 24 September 2015
David Fitz on 22 September 2015

Category: Getting help

Replies: 5

Last updated: 23 September 2015

New web site - Sept 2015
by karen (Sep 23)

The new site is much more user friendly and feels like it has even more information on it - congratulations Sandy and team

Karen

by nigel (Sep 22)

Well done sandy and all, looks really good.

by stella (Sep 22)

The new site is great, much, much easier to use. Thanks for all the work you've put into it, we all appreciate it.

by darley (Sep 22)

It looks a lot better.
Category: Getting help

Replies: 5

Last updated: 23 September 2015
Parklife on 18 September 2015

Category: Side effects

Replies: 2

Last updated: 19 September 2015

Bosutinib and stomach/abdomen pain.
by Parklife (Sep 19)

Hi Sandy.
Thanks for getting back.
I have had bloods ran this week and apparently my liver results are normal but the Consultant said my Haemaglobin was low. He requested an Ultrasound and the

by sandy craine (Sep 19)

John... from your description of where the pain radiates from it sounds like it may be your liver. Maybe a good idea to ask for your liver enzyme levels. If they are raised it may explain the pain-

by Parklife (Sep 18)

Hi everyone. I just wondered if anyone out there currently taking Bosutinib has had any issues with abdomen/flank/lower back pain. I have been on here before for muscularskeletal pain which I have
Category: Side effects

Replies: 2

Last updated: 19 September 2015
David Ryner on 13 September 2015

Category: Uncategorised

Replies: 2

Last updated: 15 September 2015

The availability of bosutinib and ponatinib for CML patients in England: an update
by sandy craine (Sep 15)

Hi Moirah,

Do not worry at this point. It is highly likely that you will respond very well to imatinib.
If you were not to respond to imatinib, then you will have access to nilotinib to which

by Moirah (Sep 13)

Sorry but being newly dx end July and now being on imatinib, does this decision by the CDF now mean that if my imatinib doesn't work then my 1 and only other option left is nilotinib and if that

by David Ryner (Sep 13)

Update on bosutinib: I went to a meeting on Monday (7th) at the Department of Health where the Chair of the CDF Panel, Peter Clark, briefed patient groups on the current delist and the Panel’s
Category: Uncategorised

Replies: 2

Last updated: 15 September 2015
Bmckenna on 10 September 2015

Category: Drug-food interactions

Replies: 5

Last updated: 13 September 2015

Juicing fresh produce... Is it ok with SPRYCEL?
by Steven Davies (Sep 13)

Other foods to avoid are Pomegranate, Star fruit, blood or servile oranges and Aloe Vera juice.

by Bmckenna (Sep 11)

Hi S and D,
Thanks to you both for your input. I did read about grapefruit and the negative affects while taking TKIs. I've read up much on juicing. I think I'll try it in addition to healthier

by darley (Sep 10)

I farm and aside from your mistaken beliefs re farming it's really just playing to marketing hype which the objective of generating sales if you're taking vitamin and mineral supplements without

by sandy craine (Sep 10)

As Darley has already warned... grapefruit is definitely contraindicated with TKIs. this is because one of its constituents increased the plasma concentration of these kinds of drugs and therefore
Category: Drug-food interactions

Replies: 5

Last updated: 13 September 2015
Moirah on 7 September 2015

Category: Side effects

Replies: 3

Last updated: 11 September 2015

spleen pain?
by cdw5000 (Sep 11)

Hi Moirah,
Mt spleen took ages to feel normal again. My white blood cell count was 108,000 at diagnosis, which resulted in my spleen being twice its normal size. I recall i had twinges for up to one

by Moirah (Sep 8)

Thank you Sandy yes I'm very lucky to be at the royal in Liverpool prof Clark and the CML nurses are fab. I just feel like I would b bugging them prof Clark did say when I mentioned the pain that it

by sandy craine (Sep 8)

I am sure your notes will indicate how large your spleen was at diagnosis, but without knowing that it is difficult to say how long it will take to get back to normal. You are still at an early

by Moirah (Sep 7)

Hi Please can I ask how long it takes for spleen to go back to normal Or at least stop hurting, I was dx 20/7 been on imatinib since this date an I am getting twinges of pain around spleen area
Category: Side effects

Replies: 3

Last updated: 11 September 2015