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robforrest on 2 November 2011

Category: Uncategorised

Replies: 3

Last updated: 9 November 2011

Conceiving on Glivec
by robforrest (Nov 9)

Thanks guys for the posts, its always nice to hear other people have been through the same.
I spoke with my consultant about this the last time I saw him and he towed the classic doctor line of

by bc (Nov 9)

Hi Rob,
We had a similar sort of experience. Diagnosed Nov 2007 and have been on Imatinib 400 and 600 (for the last year/18 months). Fertility issues were one of the things that were important

by cmlblogger (Nov 3)

Dx'd back in 2006, initially the doctors advice was not to try for more children, this advice changed a couple of years later so we started trying for child #2
And after a little while we had a

by robforrest (Nov 2)

Hi All,
I was dx'ed back in early 2009 and finally after a steady decline, I've git the magic 0.1% BCR/ABl. My wife and I are now thinking of starting a family and I was wondering if anyone
Category: Uncategorised

Replies: 3

Last updated: 9 November 2011
Anonymous (not verified) on 2 November 2011

Category: Uncategorised

Replies: 2

Last updated: 2 November 2011

Night sweats – Glivec side effect ?
by lisad123 (Nov 2)

my husband had been having night sweats for about 6 months before he was dx'ed. He was very unwell but was still in first stage of cml. I could be a side effect or it could be the cml itself.

by Olivia (Nov 2)

I have had night sweats all the time I've been on Glivec - 2 years now - but not all night, and not every night. They are just one of those things we have to put up with. As well as

by Anonymous (Nov 2)

Hi all, I been on Glivec for 2 weeks now, had some bad leg cramps for a few days easing off now, found Ibuprofen low does has helped.
Last couple of
Category: Uncategorised

Replies: 2

Last updated: 2 November 2011
hcy0da on 2 November 2011

Category: Uncategorised

Replies: 3

Last updated: 5 November 2011

Glivec Mouth?
by sandy craine (Nov 5)

Hi Naomii,
I have never been told to avoid vitamins/minerals. These are food supplements- i.e what we should get from the foods we eat.... however, the way foods are produced, farming /growing/

by ni2i (Nov 3)

Hi I also have the same problem, started with outh ulcers and then swollen purple gums m heamatologist thinks its from the gleevec, as it only started after taking them. Im not in pain with my gums

by sandy craine (Nov 3)

I have not heard of this side effect.. you might look at supplementing with B Vits as it might be that you need a little more B's etc in your diet. I think one of the signs of B deficiency

by hcy0da (Nov 2)

I have been on Imatinib for 2 years now post transplant and over the last few months have experienced quite sore gums. Several trips to the dentist and a whole face x-ray later has established there
Category: Uncategorised

Replies: 3

Last updated: 5 November 2011
joflo on 30 October 2011

Category: Uncategorised

Replies: 1

Last updated: 30 October 2011

Newly diagnosed any advice/support please
by sandy craine (Oct 30)

Good you found us early on because as you say- the best people to talk to are the one's who have the same experience and therefore understand what you are feeling and understand what you need to

by joflo (Oct 30)

Hi All
Am I glad I came across this site - first time I have had nerve to google as am totally petrified of what I may find out.
Only just diagnosed about 2 weeks ago and I can't tell you
Category: Uncategorised

Replies: 1

Last updated: 30 October 2011
lisad123 on 29 October 2011

Category: Uncategorised

Replies: 2

Last updated: 30 October 2011

HELP, moving PCT after NICE guidelines change on Dasatinib
by sandy craine (Oct 30)

The NICE guidlines are not legal just yet. We have an appeal to get through first. Even so, those who are already treated with dasatinib or nilotinib will remain on treatment unless they cease to

by Pennie (Oct 30)

Hi Lisa not sure of the position now, but when I moved PCT the new one accepted the drugs I was on as OK. Perhaps one way is to stay as a Hammersmith patient and do sharecare with

by lisad123 (Oct 29)

hello all,

sorry its been so long since posting. History for those that dont know. My husband Darren was dx'ed with CML, in April 2009 and to start with he wasnt well at all. |When dx
Category: Uncategorised

Replies: 2

Last updated: 30 October 2011
Anonymous (not verified) on 29 October 2011

Category: Uncategorised

Replies: 1

Last updated: 29 October 2011

Ache legs, Magnesium and Basophils
by sandy craine (Oct 29)

Hi Nigel.... well done on normalisation of blood counts- HR (Haematological Response). within 4 weeks from starting with imatinib therapy is the first goal.
Don't worry- basophils are not blast

by Anonymous (Oct 29)

Hi been on Glivec for 12 days and top of my legs ache, cramps somewhat yesterday and today, feels like after you have exercised to much, and then the following day feeling. Otherwise no side effects
Category: Uncategorised

Replies: 1

Last updated: 29 October 2011
EmChops on 28 October 2011

Category: Uncategorised

Replies: 7

Last updated: 12 November 2011

Water during fasting on Nilotinib please comment if you do
by EmChops (Nov 12)

Thank you so much everyone. i have now had it confirmed by my trial nurse I can drink water during the fasting period. you would not believe the difference it has made to my life, i no longer zone

by lynnsch (Nov 12)

Hi Emma,
I have been on Nilotinib for a year. I have been told that its fat that transports the drug into your bloodstream to quickly and that's why you fast. I personally drink mint tea,

by EmChops (Oct 30)

This really has changed everything! I have started sipping water during fasting although my husband is very reluctant for me to do it without checking with the trial people so I shall call first

by EmChops (Oct 30)

This really has changed everything! I have started sipping water during fasting although my husband is very reluctant for me to do it without checking with the trial people so I shall call first
Category: Uncategorised

Replies: 7

Last updated: 12 November 2011
Janet on 28 October 2011

Category: Uncategorised

Replies: 1

Last updated: 29 October 2011

Webcast - Dr Michael Mauro
by sandy craine (Oct 29)

Hi Janet... thanks. I have uploaded this to the video page as I found a way of getting the embed code by linking to Patient Power via their YouTube link rather than through their webpage.
I agree

by Janet (Oct 28)

This is a webcast by Dr Michael Mauro, an eminent US haematologist. He covers a range of CML treatment questions, the quest for a cure, and treatments for those who do not respond to current TKIs.
Category: Uncategorised

Replies: 1

Last updated: 29 October 2011
cousineg on 28 October 2011

Category: Uncategorised

Replies: 2

Last updated: 29 October 2011

What is the first day of clinical trials for Gleevec?
by cousineg (Oct 29)

According to this article, the first patient, Bud Romine took his first dose of the experimental drug on Thursday, June 25, 1998, at Oregon Health Sciences University.
http://www.

by sandy craine (Oct 29)

thanks for the links to these video's. I actually remember Bud and Yvonne because they were still at OHSU when I started the phase ll trial back in August 99. Watching these video's brought

by cousineg (Oct 28)

See this video: The first day of clinical trials for Gleevec, Bud and Yvonne
See also the History of CML
Category: Uncategorised

Replies: 2

Last updated: 29 October 2011
ruddoug09 on 27 October 2011

Category: Uncategorised

Replies: 3

Last updated: 9 November 2011

Help needed please - a bit confused!
by ruddoug09 (Nov 9)

Hi Sandy
I had the meeting today and the PCR has dropped again to 0.48% (October blood test).
However, the doc said that he wanted to see the cytogenetic showing a negative result, but its actually

by ruddoug09 (Oct 28)

Thanks for a fantastically comprehensive reply Sandy! That's just what I need and I'll take they key points to my meeting next month when hopefully we have an indication to the appeal result.

by sandy craine (Oct 28)

Hi Neil,
I would say that your doctor might be being a little bit picky here given your level is now at
0.62% rather than 0.1...%
the difference between .6 and .1% = .5 .... not much in the scheme

by ruddoug09 (Oct 27)

Hi
I was diagnosed 12 months ago and since the end of November 2010 I've been on standard 400mg Imatinib. My PCR results have gone as follows
Nov-10 71.80%

Jan-11
Category: Uncategorised

Replies: 3

Last updated: 9 November 2011
Steven D on 25 October 2011

Category: Uncategorised

Replies: 1

Last updated: 26 October 2011

I might like to change to Bosutinib
by Ali Loram (Oct 26)

Hi Steven, will contac you via email

by Steven D (Oct 25)

Hi
I have had CML since August 2004 and for the 1st 5 1/2 years was on Gleevec with a good response. However I had quite a few side effects and in May 2010 was changed to Nilotinib. I am doing very
Category: Uncategorised

Replies: 1

Last updated: 26 October 2011
Lyndsey on 25 October 2011

Category: Uncategorised

Replies: 9

Last updated: 27 October 2011

1st PCR result
by EmChops (Oct 27)

well done! really good news, congratulations!
Emma x

by Ali Loram (Oct 27)

Hi Sandy,
Thanks for you kind words, its been such a relief for now. My liver continues not to like Bosutinib, ALT is around 170, although the last one showed 118 for some reason. I think

by sandy craine (Oct 27)

Hi Ali,
this is such good news. You are obviously very sensitive to TKI therapy- given your current response to such a low dose of bosutinib. It must be such a relief for you given your experiences

by chrissie (Oct 26)

Hi Ali
It was good to talk the other day.So pleased to see that your PCRs have come down now. Congratulations - and to Olivia and Lyndsey as well. I am going to Cardiff on the 12th - so we may meet
Category: Uncategorised

Replies: 9

Last updated: 27 October 2011
Anonymous (not verified) on 24 October 2011

Category: Uncategorised

Replies: 4

Last updated: 26 October 2011

Barrier Contraception - Glivec
by sandy craine (Oct 26)

Hi Nigel,
Just for clarity on this specific and very important issue- you say this 'advice' was from your specialist- is that a CML specialist or a general haematologist?
Best wishes,
Sandy

by Anonymous (Oct 25)

Thanks for the notes both Sandy and Richard, very helpful, for info the advise was from my specalist !

by Richard42 (Oct 25)

Hi Nigel
I agree with what Sandy says - the advice given by the doctor who suggested Glivec would somehow be passed on to your wife is most odd and I have never heard that before, nor read it

by sandy craine (Oct 25)

Hi Nigel,
I am very surprised at the advice you received. I have NEVER heard any CML expert clinician express this opinion. Remember, Glivec is a targeted therapy and not chemotherapy in the
Category: Uncategorised

Replies: 4

Last updated: 26 October 2011
chalked on 24 October 2011

Category: Uncategorised

Replies: 1

Last updated: 24 October 2011

water retention?
by sandy craine (Oct 24)

Hi Chalky,
Welcome to this forum, I hope you will find it helpful as time goes on. Facial swelling or 'peri-orbital oedema' is a very commone side effect of Glivec (imatinib). It was only

by chalked (Oct 24)

Hi guys, I'm glad I stumbled upon this forum as I was looking for other side effects of glivac. My mum has been on it for about 3 weeks now. She has been experiencing the frequent runs but we
Category: Uncategorised

Replies: 1

Last updated: 24 October 2011
EmChops on 23 October 2011

Category: Uncategorised

Replies: 7

Last updated: 30 October 2011

Looking at my diet
by cdw5000 (Oct 30)

Em,
i've been on nilotinib successfully for 1 year. unless it is specific to your trial water is absolutley fine at any point in the 3-hour period. I am amazed you've been doing without

by EmChops (Oct 28)

I am so very interested to read that! I was told nil by mouth while fasting, if I can drink water that would be wonderful! I shall call my trial nurse first thing monday morning, I shall also ask

by sandy craine (Oct 28)

Hi Emma... as Pennie has already said, water is, to my knowledge, not prohibited during the fasting hours.... do check but I am pretty sure this is correct.
Vitamin supplements need to be taken with

by Pennie (Oct 28)

Hi Emma I am also on Nilotinib, and I drink water in the 3 hour slot. Check with your Dr but I think plain water is fine. Also my morning dose I take on wake up the alarm
Category: Uncategorised

Replies: 7

Last updated: 30 October 2011
Anonymous (not verified) on 21 October 2011

Category: Uncategorised

Replies: 6

Last updated: 25 October 2011

Paracetamol or Ibuprofen while on Glivec ?
by Richard42 (Oct 25)

This is one of those questions I've never had a consistent answer to.. even from CML specialists and haematologists!
Some say avoid paracetemol because it is, like Glivec, metabolised in the

by sandy craine (Oct 24)

John... I absolutely agree that we should all (CML or not) beware of codeine and thank you this post about your own experience. It is so easy to become dependant and I am amazed that this drug is

by fehr (Oct 23)

I take paracetamol or ibuprofen without worrying and I am PCRU.
I have had occasion to take the maximum recommended quantity of 30/500 co-codamol for some time and became dependant

by Olivia (Oct 22)

I'm another codeine junkie - not that I need it often, but that's what my doc gave me. Seems to do the trick.
Category: Uncategorised

Replies: 6

Last updated: 25 October 2011
Anonymous (not verified) on 20 October 2011

Category: Uncategorised

Replies: 1

Last updated: 20 October 2011

Multi vitamins and Glucosamine Sulphate
by sandy craine (Oct 20)

Hi Nigel... I am not aware of any problem with multivitamins/amino acids/vitiamin and mineral supplements in general have any adverse interaction with imatinib.... my advice would be that you should

by Anonymous (Oct 20)

Hi All,
Until diagnosis with CML took a multi vitamin and 500mg Glucosamine Sulphate for joints as play a fair bit of squash. Does anyone have any knowledge whether these tablets will have an effect
Category: Uncategorised

Replies: 1

Last updated: 20 October 2011
sandy craine on 18 October 2011

Category: Uncategorised

Replies: 6

Last updated: 11 November 2011

Nigel
by Anonymous (Nov 11)

Thanks for the note Chrissie, no i am not on statins that i know of, legs have got alot better over the past week, so fingures crossed they stay that well.
Nigel

by chrissie (Nov 11)

Hi Nigel

I've been on Glivec 400 for 26 months now and had real trouble with cramps up till early this summer. By far the worst was in
the neck ( pain in the neck?) which lasted on and

by Richard42 (Nov 11)

Just my own experience with cramps. 2 1/2 years on Glivec and I still get cramps. In the feet, legs (occasionally), hands, neck and back. They are minor and not constant - a bit like when

by Anonymous (Nov 9)

Hi all,
Posting this for others for the future, i have found one ibuprofen tablet with breakfast makes a massive difference for the whole day.
Nigel
Category: Uncategorised

Replies: 6

Last updated: 11 November 2011
Lyndsey on 18 October 2011

Category: Uncategorised

Replies: 4

Last updated: 18 October 2011

1st eye bleed
by sandy craine (Oct 18)

Hi Lynne, it would do no harm for you to check with your optician as it will reassure you that there is no more sinister a reason for your eyebleed other than it is a common side effect of TKI

by Lyndsey (Oct 18)

Thanks sandy I'm now on the case to get all of the above! Just another question it does seen common from reading the forum but should I get my optician to check it out or will it be ok. Yes very bad

by Lyndsey (Oct 18)

Thanks sandy I'm now on the case to get all of the above! Just another question it does seen common from reading the forum but should I get my optician to check it out or will it be ok. Yes very bad

by sandy craine (Oct 18)

Hi Lynne,
This is very inconvenient timing for you to have an eyebleed. It is quite common and will go away eventually.... hopefully by Friday!
I found that bathing my eyes in either
Category: Uncategorised

Replies: 4

Last updated: 18 October 2011
david_a on 17 October 2011

Category: Uncategorised

Replies: 2

Last updated: 18 October 2011

Magnesium oil
by sandy craine (Oct 18)

Hi David,
I too would like to congratulate you on your MMR- this is a very good response indeed.
Re; side effects you mention- I assume you did not experience dehydration and/or diarrhea before? As

by Olivia (Oct 18)

Firstly, congratulations on your PCR - I'm quite envious, as I've been on Glivec for nearly 2 years and mine is quite a bit higher.
I've been using magnesium oil for some time

by david_a (Oct 17)

Hello everyone.
I have minimal side effects with glivec 400mg per day for 16 months, but I do get occasional cramp in the hands, feet and neck. I also sometimes feel quite fatigued in the afternoon
Category: Uncategorised

Replies: 2

Last updated: 18 October 2011