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David Ryner on 3 June 2016

Category: Uncategorised

Replies: 2

Last updated: 3 June 2016

NICE CDF Rapid Reconsideration Committee meeting for bosutinib
by David Ryner (Jun 3)

You make an interesting point and what's called NICE 's 'new approach', and broader policy, is all about reducing the timelines between clinical trial data becoming available and

by darley (Jun 3)

Excellent post and thank you for that.
Whilst I understand the NICE process and the necessity of ensuring that drugs are objectively reviewed, it does seriously concern me that NICE impedes clinical

by David Ryner (Jun 3)

As part of the NICE CDF (Cancer Drugs Fund) Rapid Reconsideration process for bosutinib I attended, with a patient who very kindly volunteered to participate, the committee meeting in Manchester
Category: Uncategorised

Replies: 2

Last updated: 3 June 2016
sandy craine on 1 June 2016

Category: Uncategorised

Replies: 0

Last updated: 1 June 2016

CML Patient's support meeting - Glasgow 16th June 6-8pm
by sandy craine (Jun 1)

See our events page for details
http://www.cmlsupport.org.uk/event/cml-patient-support-group-meeting-gla...
Category: Uncategorised

Replies: 0

Last updated: 1 June 2016
Frenchguy on 11 May 2016

Category: Uncategorised

Replies: 16

Last updated: 1 June 2016

Leg Muscular and other limb problems
by Frenchguy (Jun 1)

Thanks John,
Unfortunately, our cases seem to be so similar... With the frustration come the fear of being mis-diagnosed from long term tki using or something else.
Walking is my main issue actually

by Parklife (Jun 1)

Hi Francis
Sorry for the late response, I haven't been great.
In response to your question, the twitches are intermittent, appear in different areas and are not troublesome. I have had them across

by Frenchguy (May 28)

Hi all,
I come back on the thread, to give you some news which are exactly the same as before. John, I am really "interested" to know that you suffer from twitches too. I am actually

by chrissie (May 25)

Rooting for you, John. I so hope they get to the bottom of all this pain. Not much I can add but I'm sure there are many people out there reading of your experience and thinking of you,
Best
Category: Uncategorised

Replies: 16

Last updated: 1 June 2016
wshi2001 on 31 May 2016

Category: Uncategorised

Replies: 3

Last updated: 1 June 2016

Left abdomen pain lately
by nigel (Jun 1)

Well worth mentioning it to you Dr and or pop and see you GP for them to feel for it to see if palpable.

by wshi2001 (Jun 1)

Hi, Nigel,
Thanks so much for your quick response. The left abdomen pain persists, it gets worse after I had a meal. I hope it is not cml related. I did my blood test today.

by nigel (May 31)

Hi William. Firstly you mention not being at MMR 0.1 at 18 months, while absolutely that is right, you are so so close that basically you have achieved it in my view. You have a CML that seems to

by wshi2001 (May 31)

Hi, everyone,
Its been a while that I haven't posted on the forum. My PCR from diagnose is 412%, 37%, 0.74%, 0.24%, 0.48%, 0.11%, 0.12% (3 months ago), virtually no change for the last two
Category: Uncategorised

Replies: 3

Last updated: 1 June 2016
lesley baliga on 13 September 2015

Category: About CML

Replies: 6

Last updated: 31 May 2016

atypical CML
by ajmmmm2728 (May 31)

Does your husband experience SEVERE fatigue and weakness?

by sandy craine (Sep 14)

Hi Lesley, as far as I am aware 'atypical CML' (aCML) is a myelodysplastic syndrome (MDS)/ myeloproliferative neoplasm (MPN) - part of a group of rare diseases of the marrow.
aCML does not show

by lesley baliga (Sep 14)

Thank you very much Darley I didn't know about google scholar - very useful.
Lesley

by lesley baliga (Sep 14)

Hi David,
We don't know. His haematologist just said in passing that it is atypical and has referred him to a specialist at Hammersmith Hospital. My husband doesn't really want to know anything
Category: About CML

Replies: 6

Last updated: 31 May 2016
DKurup on 9 May 2016

Category: Reproductive health

Replies: 6

Last updated: 21 May 2016

Discontinue Imatinib after 1 year for conception
by David Fitz (May 21)

That's great to hear, I hope it's put your mind totally at rest.
Good luck!!

by DKurup (May 21)

Thank you David, Sandy, Darley, Nigel for your answers.
We have decided to not stop the medication and continue. Talked to Dr. about this and he is okay with this as well.
Thanks again,

by nigel (May 9)

LIkewise i would agree, indeed this was covered this week at the cml horizons conference where they very clearly said fathering a child on imatinib is safe, and on the oher tkis there is growing

by darley (May 9)

I'm gob-smacked at that advice. For certain it's not best practice and in my opinion you're right to be concerned.
I notice that Sandy has referred you to a talk by Dr. Graeme
Category: Reproductive health

Replies: 6

Last updated: 21 May 2016
Doshi on 19 May 2016

Category: Blood tests

Replies: 2

Last updated: 19 May 2016

Gleevec resistance?
by David Fitz (May 19)

Hi Raj,
With regards to timing ... with imatinib, you are "topping up" a level in your body so breakfast or lunch ought not to make a difference really. Though it's best to take as

by nigel (May 19)

Hi Raj, Welcome to the group. Your results have been outstanding for 10 years. I do feel that your " blips" are exactly that and not resistance. Your levels are still very very low and

by Doshi (May 19)

Hello All,
I am new to the group. Hope you can help answer my question.
History: I was diagnosed CML in 2001. After 2-3 years On gleevec 400mg, I was in major molecular response and
Category: Blood tests

Replies: 2

Last updated: 19 May 2016
Lopaulpa on 16 May 2016

Category: Side effects

Replies: 2

Last updated: 17 May 2016

Do you eat any supplements, vitamins and such?
by David Fitz (May 17)

Vitamin D because I'm low on that, but then again nearly everyone in the UK is!

by darley (May 16)

No. I just have a well balanced diet so get everything I need there. Also have regular blood,checks so i know I'm neither deficient or have problems with malabsorption.

I'm not a

by Lopaulpa (May 16)

I am wondering because of the low energy I have and all that side effect business with me taking Tasigna, I was wondering if ya'll take any vitamin supplements or something like that to get some
Category: Side effects

Replies: 2

Last updated: 17 May 2016
RufusBabe on 20 April 2016

Category: About CML

Replies: 3

Last updated: 13 May 2016

New to the group
by nicholas22 (May 13)

Hi rufus, I was told I had cml about a year ago, and it to made me very angry. Ive led a very healthy lifestyle, but as we all know with cml its nothing really to do
with that, after a year on

by sandy craine (Apr 21)

Hi,
It must be very hard for you to cope with your sisters anger which is really an expression of her fear.... I do agree with David that you might try to learn as much as you can about CML,

by David Fitz (Apr 20)

Hi there. I know - all of us here know - how your sister is feeling at the moment. Anger is a pretty normal response to a cancer diagnosis. Unfortunately, our nearest and dearest are the ones

by RufusBabe (Apr 20)

Hello everyone
Hope you are OK :) My sister has been diagnosed with CML and she has been so angry since. She cannot stand seeing me as I have not CML and constantly tells me I should have CML
Category: About CML

Replies: 3

Last updated: 13 May 2016
teddyb on 13 April 2012

Category: Uncategorised

Replies: 18

Last updated: 12 May 2016

Safe to split 400mg Glivec in 3 or 4 parts for easier swalloing?
by chrissie (May 12)

Hi teddyb
Thanks for you reply. I have now started taking the 400mg as one whole tablet again and the pain in my oesophagus is decreasing, so am wondering if it was taking the tablet in 2 halves.

by teddyb (May 10)

Chrissie: I have also been on the 100mg for the last years now, i hope you can get them soon. The small pills are "scored" so they can be split, but i think there is a lot more Imatinib

by chrissie (Apr 26)

Thanks for your reply, Olivia.
Yes I have always had problems swallowing the 400mgs. I was so pleased when I was on the 2x100mgs as they were easy to swallow, but after losing MMR 3 times in the

by Olivia (Apr 26)

That's interesting, Chrissie. When you were first diagnosed and presumably put on the big 400 tablets, did you have any difficulty swallowing them then? Have you asked about going on
Category: Uncategorised

Replies: 18

Last updated: 12 May 2016
rsgiles on 4 May 2016

Category: Blood tests

Replies: 9

Last updated: 10 May 2016

How often between PCR tests
by teddyb (May 10)

Hello.

I have been tested every 3 months up until now, but after 4 years of CML, and being in MMR for the last 3 years, i am now having pcr tests done every 6 months.

Good luck to you

by sandy craine (May 6)

MUGA scans are usually for those who have had radiotherapy to the chest, spine or upper abdomen or those who have had a stem cell transplant or certain 'chemotherapies'. I had to have a MUGA

by darley (May 6)

Not because of imatanib. But I do know that some chemo can cause heart problems. Not so far as I'm aware the TKI's though.
I have had one and because I had total body

by rsgiles (May 5)

Did anyone ever have to take that MUGA test for the heart?
Category: Blood tests

Replies: 9

Last updated: 10 May 2016
Parklife on 5 May 2016

Category: Side effects

Replies: 9

Last updated: 9 May 2016

Steroids and lesions
by darley (May 9)

Hey it's been fabulous and sunny here this week. Mind you we were white over with snow the week before.

by Parklife (May 8)

Hi Sandy
Many thanks for all this information and links.
Interesting point about the plasma testing, this is something that hasn't been mentioned, I'm not saying this hasn't been tested, but to my

by sandy craine (May 8)

John-Paul,
Re your vitamin D3 deficiency... well you can do something about that quite quickly-
a. sit in the sun as much a possible - Darley suggests a holiday but if you can't manage that

by darley (May 8)

For sure you've got a dilemma and a big decision to make. Sounds like you need a holiday in the sun to boost your vitamin D and give you some head space to think it through.
All the best.
Category: Side effects

Replies: 9

Last updated: 9 May 2016
Judith on 8 May 2016

Category: Uncategorised

Replies: 2

Last updated: 9 May 2016

Decision time
by darley (May 9)

I absolutely agree with Sandy

by sandy craine (May 8)

Hi Judith,
I am rather alarmed that your doctor has not given you another TKI to keep your CML under control. Where are you being 'treated' ?? There is no doubt that your bcr/abl counts will

by Judith (May 8)

To Sandy and Darley
Many thanks for your replies. When I made the decision to stop dasatinib I asked my doctor what TK I would be put on should my counts start to go up. I was surprised when
Category: Uncategorised

Replies: 2

Last updated: 9 May 2016
Lopaulpa on 3 May 2016

Category: Side effects

Replies: 6

Last updated: 8 May 2016

New here, I am having a difficult time.
by Lopaulpa (May 8)

Also, sex life is not very good at the moment because of all of this.. my energy is not good at all and I have used Cialis from the doctor and it helps with keeping it up but then also the energy

by Parklife (May 4)

It may be worth asking where you are from a molecular perspective. If you have a very good response and therefore are sensitive to TKI's that may also be worth discussing a redution of Tasigna

by Lopaulpa (May 4)

Thank you for the reassuring David, I am glad I am not the only one this is happening to.
It has been so hard, I am 28 and I can barely clean up around the house without being exhausted and dripping

by Lopaulpa (May 4)

Hi and thanks for kind words, I am also glad I found this forum.
I switched the meds because I think the side effects were even worse on Imatinib, and I was moving from Iceland to Denmark so my
Category: Side effects

Replies: 6

Last updated: 8 May 2016
Moirah on 20 April 2016

Category: Uncategorised

Replies: 11

Last updated: 7 May 2016

Do you take your imatinib same time daily
by David Fitz (May 7)

Hi again Moirah,
This topic just came up at CML Horizons 2016 conference. One of the doctor's there (Dr Rossi) spoke about he was not that concerned about taking imatinib at different times of

by darley (Apr 25)

Mine's slightly different to that. It says

Try to takeat the same times of day each day, as this will help you to remember to take your doses regularly.
If you do forget to take a dose,

by David Fitz (Apr 24)

Whilst I think all patients should be very familiar with the patient information leaflets and the content of them, the Glivec one isn't massively helpful in this instance.

Take the

by darley (Apr 24)

If you read your leaflet it tells you what you should do in terms of taking the medication and delay.
Category: Uncategorised

Replies: 11

Last updated: 7 May 2016
Judith on 25 April 2016

Category: Uncategorised

Replies: 2

Last updated: 7 May 2016

Decision time
by darley (May 7)

Judith, Not sure how I missed this post. I'm sorry if you think you were being ignored.
That's a really difficult position to be in and I can absolutely appreciate your concern

by sandy craine (May 6)

Judith.... have you been offered another TKI? One that does not have PE as a side effect such as bosutinib, nilotinib or ponatinib?
Sandy

by Judith (Apr 25)

To Darley
Further to my comments in February regarding dasatinib. I came of the tablets for 7 weeks and it was wonderful to feel so normal and healthy. In March I saw my doctor and was given 3
Category: Uncategorised

Replies: 2

Last updated: 7 May 2016
MartinZA on 19 April 2016

Category: Treating CML

Replies: 4

Last updated: 6 May 2016

Some questions on responses and side effects
by MartinZA (May 6)

Hi David

Thank you so much for the kind words and support. It is as you say, and we are so fortunate to have this site to help us - just knowing that there are many more of us "out

by David Fitz (Apr 20)

Hi Martin,
Something you said in your reply struck a chord with me... "I am sure that as time goes on I will think much less about CML".
You're absolutely right in that it is very much

by MartinZA (Apr 20)

Hi Nigel
Thank you so much for taking the time and trouble to write me such a comprehensive reply. Before seeing your message, I had actually edited my thread as I thought it was too long,

by nigel (Apr 19)

Hi Martin

Welcome to the wide and varied world of CML, I mean this in the sense that there seem to be so many pieces of advice, some of which seem to conflict and many of which do not reflect
Category: Treating CML

Replies: 4

Last updated: 6 May 2016
Lynette on 3 May 2016

Category: Uncategorised

Replies: 4

Last updated: 6 May 2016

Anxiety
by MartinZA (May 6)

Hi Lynette

I'm pleased you started this thread because it is something that I've had to deal with too - I tell people that my CML is mostly fought in my head, as I'm fortunate

by darley (May 4)

Doesn't worry me at all. I don't see why it should. a test is merely confirmation of a fact that already exists. As a principle I don't worry about what i can't control and effect. I

by Olivia (May 4)

I think we all - or at least most of us - feel some apprehension when the check-up is approaching. I do, even after nearly seven years of good progress, and I can honestly say that I don't

by Ben K (May 4)

Hi Lynette,

I am completely new to this as I have been recently diagnosed. There are so many unknowns it seems that if you try to manage them all you end up a bit messy. I am
Category: Uncategorised

Replies: 4

Last updated: 6 May 2016
Ben K on 4 May 2016

Category: Side effects

Replies: 1

Last updated: 5 May 2016

Nilotinib and Lipase
by sandy craine (May 5)

Hi Ben and welcome to this forum. Nilotinib can cause elevated seem lipase, but unless you have had a previous history of pancreatitis or are suffering abdominal symptoms then it is most likely that

by Ben K (May 4)

Hi - I am Ben and am a 50 year ex-Pom living in Australia - there doesn't seem to be a support group like this in Oz so I decided to hang out here - hope that's OK!
I was diagnosed in March
Category: Side effects

Replies: 1

Last updated: 5 May 2016
2waterdogs on 29 April 2016

Category: Treating CML

Replies: 1

Last updated: 30 April 2016

Tasigna
by sandy craine (Apr 30)

Hi Pat and welcome to this forum. This is really early days for you.... only day 4 on therapy, so it is not surprising that you feel you are still in denial about the whole thing. I think I can say

by 2waterdogs (Apr 29)

Hi!
Brand new here...Just diagnosed 3 wks ago. I'm just starting Tasigna (4 days ago) and I'm wondering how long till we see results that (hopefully) show it is working.
Category: Treating CML

Replies: 1

Last updated: 30 April 2016