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sandy craine on 11 November 2015

Category: About CML

Replies: 6

Last updated: 13 November 2015

Upcoming Events
by darley (Nov 13)

Thanks for finding out and letting us know.   I'm hoping that it's also going to be available after the event.   I've a busy day tomorrow but wanted to watch some of

by sandy craine (Nov 12)

Just checked with organisers and was told the following:
There will be a LIVE Webcast of this years meeting as well as links to the presentations etc. on   http://www.mpdmeetings.org/

by darley (Nov 12)

Ah right.   That's a relief. I thought it was me that wasn't seeing something obvious. ;)
Thanks.

by sandy craine (Nov 12)

Hi Darley, I am not too clear on this either. I am waiting for Prof. O'brien to let me have the actual webcast link... which I assume/hope will be apparent on the www.mpdmeetings.org
Category: About CML

Replies: 6

Last updated: 13 November 2015
Basil from RSA on 10 November 2015

Category: About CML

Replies: 6

Last updated: 12 November 2015

Good news from Basil in South Africa
by darley (Nov 12)

Basil, most interesting. I remained hesitant about trying dose reduction having read about those who had come off, albeit not in trial and whom had managed

by Basil from RSA (Nov 11)

Thanks Sandy. I have always stated that it is a pity that many in TFR were not part of any trials so that this valuable data is lost.
I have kept all my medical and test records since my first PCR

by Basil from RSA (Nov 11)

Hi Darley,
No I was not on any trial at all. We don't have such luxuries in South Africa. My decision to stop was based on many factors but mainly the results of the original STIM trials in

by sandy craine (Nov 11)

Basil,
so good to hear you are still in TFR after all this time. I know you started off as a 'one man trial' and it is wonderful that your doctor was willing to support you in the right way
Category: About CML

Replies: 6

Last updated: 12 November 2015
Moirah on 9 November 2015

Category: Uncategorised

Replies: 3

Last updated: 11 November 2015

what am I aiming for? what does good look like?
by sandy craine (Nov 11)

Hi Moirah,
Many congratulations on your extremely good response to therapy within the first 3 months. European Leukaemia Net recommendations are as follows:
Optimal Response
3 mths:

by darley (Nov 10)

It's sounds good to me too. But then it took me 6 years to get to that stage. Plus a mass of awful treatment including twice daily interferon injections and matched

by Olivia (Nov 10)

Your pcr sounds very good indeed - it took me a year to get that low. There may indeed be blips, as the pcr result can vary for a lot of reasons. The time taken for the sample to

by Moirah (Nov 9)

Hi everyone I hope you are all doing good.
I'm sorry to bug but after my 1st pcr results I'm now starting to feel a bit more brave and want to try and understand more, so I'm sorry if I'm asking
Category: Uncategorised

Replies: 3

Last updated: 11 November 2015
sandy craine on 6 November 2015

Category: About CML

Replies: 0

Last updated: 6 November 2015

Live Online Broadcast: CML, the Patient's Journey. November 12th 19.30 EST
by sandy craine (Nov 6)

If you take a look at the Events page (both under Resources or on the Home page) you will see a flyer for the above.
Category: About CML

Replies: 0

Last updated: 6 November 2015
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