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sandy craine on 4 November 2015

Category: Getting help

Replies: 1

Last updated: 6 November 2015

UK Patient Day- 14th November
by sandy craine (Nov 6)

Registration is now closed. For those of you who cannot make the day there will be a webcast of the conference - Link will be provided as soon as it is live, both here and on our Facebook page.

by sandy craine (Nov 4)

http://www.cmlsupport.org.uk/node/984
There are just 2 places left for the Patient Day at Hammersmith Hospital, London.
If you would like to grab them call or email Mandy Sale asap. on
a
Category: Getting help

Replies: 1

Last updated: 6 November 2015
chrissie on 4 November 2015

Category: Blood tests

Replies: 2

Last updated: 5 November 2015

Strange results on DESTINY
by chrissie (Nov 5)

Thanks, Darley. Finally allowed to lie down so managing to get a little sleep at long last. Got to wear the brace to immobilise the upper arm for at least another 6 weeks, but, looking at the xray,

by darley (Nov 5)

Chrissie, you're obviously an oddity.
Whoops I mean one in a million ;)
I'm following your story with interest because as you know I've also just completed the year on half dose and

by chrissie (Nov 4)

Hi All
Well my blood appears to be somewhat strange. Having had Month 12's PCR result on half dose Imatinib (Glivec) come back at 0.294% with a phone call from my consultant that same evening
Category: Blood tests

Replies: 2

Last updated: 5 November 2015
Lisabragg on 28 September 2015

Category: Side effects

Replies: 5

Last updated: 29 October 2015

spyrcel side effects
by Anonymous (Oct 29)

I will be on Sprycel 3 years this January. Initial dose caused severe fatigue, so severe I could not get out of bed. My oncologist decreased it to 70mg/day, 5 days a week and I can now

by Andey (Oct 2)

I have been on Sprycel (dasatinib) for several years now, after I stopped responding to Gleevec. My experience has been that the side effects are at their worst when first starting on the treatment

by sandy craine (Sep 28)

Hi Lisa, I am sure the side effects will subside eventually. Maybe your son needs to know how TKIs actually work - you have to keep the plasma level of the drug (whichever one it is) constant

by LS (Sep 28)

Hi, Lisa,
My friend takes Sprycel for a little more than two weeks now. He has nausea and could not eat properly. As a result, he has lost 3 KG... Wee hope that it will disappear with the time
Category: Side effects

Replies: 5

Last updated: 29 October 2015
Miriam 78 on 28 October 2015

Category: Uncategorised

Replies: 1

Last updated: 29 October 2015

NHS prescription process for imatinib
by darley (Oct 29)

Read this:

http://www.cmlsupport.org.uk/thread/10662/new-policy-dispensing-glivec

by Miriam 78 (Oct 28)

Hello!
ive just converted to the NHS after my year of private treatment and was surprised that I could only collect a 1 month supply at a time from NHS - is that normal?! I'm used to
Category: Uncategorised

Replies: 1

Last updated: 29 October 2015
Parklife on 16 October 2015

Category: Uncategorised

Replies: 15

Last updated: 28 October 2015

Blistering, possible chicken pox?
by sandy craine (Oct 28)

So sorry that you are suffering so much John. ... doesn't seem right that you have to get chickenpox at the same time as trying to cope with the side effects of TKIs. It must be a real

by David Fitz (Oct 28)

Hey mate -
I don't have much to add or say, but I know how much you were looking forward to your appointment at Hammersmith. Hopefully that'll be rescheduled soon.
You're not catching

by Parklife (Oct 28)

Hi. Out of hospital.
Unfortunately I still feel not too great. My CRP was 15 on Friday and then 17 on discharge. I have been taken off IV Aciclovir and put onto another 7 days of oral

by darley (Oct 25)

Oh dear! I'm sorry to hear that. I do hope you get the support and diagnosis you need and are soon feeling better.
Category: Uncategorised

Replies: 15

Last updated: 28 October 2015
agroslk on 26 October 2015

Category: Reproductive health

Replies: 2

Last updated: 27 October 2015

Effect on foetus on using Imatinib
by sandy craine (Oct 27)

Congratulations. For women who have a diagnosis of CML and who are treated with TKI therapy it is not recommended that they continue with this drug therapy if they plan to get pregnant or if they

by darley (Oct 26)

First of all congratulations to you and your wife. Great news that you have a new addition to look forward to.
If you enter the word "pregnancy" in the search bar you

by agroslk (Oct 26)

I am male 38 years old and on treatment for CML chronic phase for exactly one year and taking imatinib 400. My wife recently conceived appropriately one month. My question is, are there any effects
Category: Reproductive health

Replies: 2

Last updated: 27 October 2015
Lienke SA on 25 October 2015

Category: Treating CML

Replies: 0

Last updated: 25 October 2015

Tasigna with peg interferon
by Lienke SA (Oct 25)

Hi!

Are any of you on the Tasigna combined with pegylated interferon trial? Or any other tki in combination with peg interferon. Eg this one:
https://www.clinicaltrials.gov/ct2/
Category: Treating CML

Replies: 0

Last updated: 25 October 2015
Moirah on 14 October 2015

Category: Side effects

Replies: 3

Last updated: 19 October 2015

1st 3 months of imatinib - your experiences?
by darley (Oct 19)

Bug away all you like. It's a huge thing getting a cancer diagnosis. There'll be "stuff" you want to know and better understand.
I saw your post last

by sandy craine (Oct 17)

Hi Moirah,
good to see your haemoglobin is going up... you should feel less tired the higher it goes (check the CML Facts page for normal ranges of all blood counts) . You wbc is well within the

by Parklife (Oct 15)

Hi Moirah
First of all, don't be sorry for asking questions and never feel like you are bothering people, that would be my first bit of advice. Especially on this forum, that is what we are all

by Moirah (Oct 14)

Hi everyone I hope you are all doing well, I was dx July this year been on imatinib 400mg since 20/7.

I'm a worrier, overthinker and think I prob do bug people with my need for reassurance for
Category: Side effects

Replies: 3

Last updated: 19 October 2015
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