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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
sandy craine on 13 October 2011

Category: Uncategorised

Replies: 2

Last updated: 20 October 2011

Dr. Cortez talks about bosutinib
by sandy craine (Oct 20)

Of course there are other TKI's in clinical trial, not only bosutinib and ponatinib- particularly effective in those with T315i mutation. many companies are interested in this area and the

by durgeshsoni (Oct 18)

My question is that as we are new molecules like ponatinb and other many NCEs in pipe line then what is the best benifit from bosutinib.
As I saw the litreture, their is no results found

by sandy craine (Oct 13)

Video interview with Dr. Cortez talking about bosutinib (Pfizer)
http://youtu.be/Ld2Cv6wntxQ
Category: Uncategorised

Replies: 2

Last updated: 20 October 2011
cousineg on 11 October 2011

Category: Uncategorised

Replies: 1

Last updated: 11 October 2011

New videos about CML
by cousineg (Oct 11)

Other video:

Sandra E. Kurtin, MS, RN, ANP-C, AOCN®, Arizona Cancer Center, addresses nursing management of the patient with CML, adherence and compliance issues with oral agents, and

by cousineg (Oct 11)

A video case study will be presented, illustrating a complicated outpatient CML scenario, beginning with the diagnostic work-up through the treatment trajectory
Category: Uncategorised

Replies: 1

Last updated: 11 October 2011
cousineg on 10 October 2011

Category: Uncategorised

Replies: 1

Last updated: 10 October 2011

Pr. Tim Hughes and CML
by Kate (Oct 10)

Thank you so much for posting this up. I found the video of the conference particularly fascinating as he discusses the trial I am taking part in in and I didn't know this video existed!

This

by cousineg (Oct 10)

See Pr. Tim Hughes
Category: Uncategorised

Replies: 1

Last updated: 10 October 2011
EmChops on 6 October 2011

Category: Uncategorised

Replies: 7

Last updated: 11 October 2011

Cytogenetic remission
by spence11 (Oct 11)

...who finds it all confusing. You're definitely not the only dumb kid in class!

Thank heavens for Sandy! Take care.x

by EmChops (Oct 11)

I think I am using the wrong terminology, according to another post, I am confused rather and do feel like the dumb kid in class!

Either way, hooray!

by EmChops (Oct 11)

Thank you so much.

It is nice to share some good news. I am getting stronger every day, although some days are harder than others I know I am on a good drug and I am one of the lucky ones.

by Steven Davies (Oct 9)

Hi Emma,
Congratulations well done on your PCR you must be really happy to haves achieved this after your ups&downs with Nilotonib Hope things will get even better with your next one. Good news
Category: Uncategorised

Replies: 7

Last updated: 11 October 2011
spence11 on 6 October 2011

Category: Uncategorised

Replies: 3

Last updated: 10 October 2011

Results confusion
by sandy craine (Oct 10)

I think there is some confusion regarding the meaning of the letter R in the context of CML tests.
We are all used the word 'remission' when talking about cancer in general and usually

by spence11 (Oct 10)

Hello Sandy
Thank you so much for your comprehensive reply - your knowledge is amazing!
Just one more question if you don't mind, can I just clarify that cytogenic remission is the same as a

by sandy craine (Oct 6)

It can be very confusing so don't worry about being confused.
Most people are not tested by PCR until the amount of PH+ cells reduces to such levels that they cannot be seen or detected by FISH

by spence11 (Oct 6)

Hello everyone.
I wonder if anyone can help me please? I'm a bit confused about my husband's latest test results.
Until now the results have been in percentages - he was diagnosed late
Category: Uncategorised

Replies: 3

Last updated: 10 October 2011
karen on 5 October 2011

Category: Uncategorised

Replies: 3

Last updated: 7 October 2011

Advice please
by Swede (Oct 7)

Hi Kerena,
Just a thought but wondered what dose of Dasatinib you've been on and whether that could be lowered to keep the PE at bay? I went down to 70 mg per day (from 100) after a bout of

by keith Pratt (Oct 6)

Good Afternoon Karena
The very same thinghappend to me earlier this year, nearly copped it this time with so much fluid in the lungs. Yes did take quite a while to get back on the straight and

by sandy craine (Oct 6)

Dear Karena,
I am sorry to hear you have had such extreme side effects from both dasatinib and nilotinib. The only advice I can offer is that you discuss your fears about restarting nilotinib fully

by karen (Oct 5)

I am hoping that someone on here could give me some advice to help me make a decision! I stopped Glivec after 8 months due to liver problems and then went onto Dasatinib which i have been on for
Category: Uncategorised

Replies: 3

Last updated: 7 October 2011
bobosbo on 5 October 2011

Category: Uncategorised

Replies: 5

Last updated: 9 October 2011

Latest PCR Results
by Steven Davies (Oct 9)

Fantastic news we are both really pleased for you. As you say so much for Nice what do they know! We know different! Hope you had a celebration with your extra zero.
See you soon
Steven & Carol

by Steven Davies (Oct 9)

Fantastic news we are both really pleased for you. As you say so much for Nice what do they know! We know different! Hope you had a celebration with your extra zero.
See you soon
Steven & Carol

by EmChops (Oct 6)

Congratulations Bob! Well done you.

Emma x

by sandy craine (Oct 6)

Hi Bob, congratulations on yet another zero. I agree when you ask "what do they know"..... we are just preparing our comment on the TAR for 2nd generation TKI's in first line use and
Category: Uncategorised

Replies: 5

Last updated: 9 October 2011
Barbs on 3 October 2011

Category: Uncategorised

Replies: 3

Last updated: 5 October 2011

FLAMSA
by sandy craine (Oct 5)

Hi Barb,
Has your friends CML progressed to acute stage? If so then a reduced intensity sct plus DLI, would only be used after high dose chemotherapy had put them into 2nd chronic stage- as in

by Barbs (Oct 4)

Thanks sandy, had already seen the articles; Am trying to get some first hand information for a CML friend

by sandy craine (Oct 4)

Hi Barb,
try these links,
http://www.nature.com/bmt/journal/v41/n8/full/1705965a.html

Conditioning RegimensHigh antileukemic efficacy of an intermediate intensity conditioning regimen for

by Barbs (Oct 3)

Has anyone heard of this conditioing regime used for AML patients? Please reply it's very important.
I think it's a reduced intensity one, like the one sandy had
Category: Uncategorised

Replies: 3

Last updated: 5 October 2011
David on 2 October 2011

Category: Uncategorised

Replies: 7

Last updated: 4 October 2011

New Trial at the Hammersmith - Glivec
by Richard42 (Oct 4)

I think the assumption must be that the understandings about what is necessary to achieve optimal response don't apply to long term maintenance of that response in at least a subset of patients

by Barbs (Oct 4)

To be perfectly honest, I find this trial dangerous.
Sub optimal doses can result in resistance!
Will they be monitoring Glivec concentration in the blood at the same time to see whether the

by terryhickmott (Oct 3)

I'm under Professor Clark in Liverpool, but now only see him once a year. Dr Heartin at Glan Clwyd mentioned the STIM trial last month, and my first reaction was one of reluctance, especially as

by liz (Oct 3)

Hi
Although very willing, I will also be asking lots of questions. Last year I asked my Cml nurse if I could drop my Glivec to 200mg, her response was that it wasn't a therapeutic dose, and not
Category: Uncategorised

Replies: 7

Last updated: 4 October 2011
Pennie on 29 September 2011

Category: Uncategorised

Replies: 3

Last updated: 30 September 2011

New consultant at Kings
by Pennie (Sep 30)

Hello Tony, Yes I also think he will be a great asset to the team, he is very keen on looking forward to new ways to work with the treatments available.
I will ask Ibrahim to make sure you are on

by Vangogh (Sep 30)

Hi Pennie
I was Dr de Lavallade's first patient on his first day, 12th September. I think he will be a great asset to The Kings Team. Would you put me on your mailing list for upcoming

by cmlblogger (Sep 29)

Am sure he used to be at the Hammersmith, very nice bloke :)

Rob

by Pennie (Sep 29)

The Kings CML the patients group meeting yesterday were introduced to Dr Hugues de Lavallade. He has joined the clinical team as a consultant haematologist in myeloid malignancies and
Category: Uncategorised

Replies: 3

Last updated: 30 September 2011
Lyndsey on 28 September 2011

Category: Uncategorised

Replies: 5

Last updated: 29 September 2011

Worried! Maybe doing too much reading
by Lyndsey (Sep 29)

Thank you everyone for your kind words. I have always been an impatient person and like things to be sorted out promptly so there lies my problem having cml is a waiting game and to watch for

by Paul Miller (Sep 29)

It sounds very familiar! I've got DX 2.5 years ago now, I can relate to those concerns about where you stand in relation to prognosis today. Well my sister had her thinking hat on and she

by ADJL (Sep 28)

For me anxiety is the primary symptom of my CML- it fluctuates in the gaps between hospital visits (some days I even almost forget that I have it!) But the days leading up to bone marrow or blood

by Lyndsey (Sep 28)

I think the 69% is my PCR now that you say that. I do often get confused over numbers. Thank you for taking the time to reassure me. My spleen was back to it's own self a couple of days after 4
Category: Uncategorised

Replies: 5

Last updated: 29 September 2011
Vangogh on 28 September 2011

Category: Uncategorised

Replies: 1

Last updated: 28 September 2011

BCR/ABL Test Results
by sandy craine (Sep 28)

Hi Tony,
I know you must be disappointed but with pcr results there is always the possibility of small changes. This is because of the variables such as- the blood sample being left a little too

by Vangogh (Sep 28)

Hi
A bit dissappointed today, just got my latest results from Kings. I have hovered at 0.037% for the last year but in July the result was undectable!!! Really pleased. Yesterdays results are 0.033
Category: Uncategorised

Replies: 1

Last updated: 28 September 2011
ian hinley on 24 September 2011

Category: Uncategorised

Replies: 1

Last updated: 24 September 2011

Great news - 3 log reduction after nearly 2 years...
by sandy craine (Sep 24)

Dear Ian... what a great result. Wonderful to have this result on or near CML Awareness Day! Not just good vibes but a real concrete acheivement.
It gives me strength to continue to argue the

by ian hinley (Sep 24)

Just a quick note to say I have finally reached 3 log reduction |(MMR) after nearly 2 years since dx. I switched from Gleevec to Sprycel 2 months ago and in 2 months it has gone down from 0.
Category: Uncategorised

Replies: 1

Last updated: 24 September 2011