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Dsk on 17 June 2015

Category: Organising your life

Replies: 3

Last updated: 21 June 2015

Marrying
by darley (Jun 21)

If:
you can't talk to her and ask her about her illness
You can't ask her about her medication
Your concern is how YOUR life will be if you marry her
Then you're not marriage material.

by Dsk (Jun 18)

She said that its been 3 yrs since diagnosed with cml and she even does not feel that she has cml. She also told that she has to continue imatnib life long.I am cdoes that mean if she stops taking

by cdw5000 (Jun 18)

At the risk of sounding abrupt you should probably ask her about the illness yourself. If you want to get married then you might need to know what she thinks and how she copes. If it's a recent

by Dsk (Jun 17)

Hi there, Can I marry a girl with cml I am confused since I don't have any knowledge on this is it dangerous she is taking imatnib tablet can any body share ur experience plz. Shez 28 now.how
Category: Organising your life

Replies: 3

Last updated: 21 June 2015
Steven Davies on 21 June 2015

Category: Getting help

Replies: 1

Last updated: 10 July 2015

Hammersmith Patient Carer support Meeting on Saturday 19/9 at 10:30
by Steven Davies (Jul 10)

Spaces are going fast so please reserve your space

by Steven Davies (Jun 21)

Hi All Support Group Meeting at Hammersmith Hospital EVERYONE WELCOME LEUKAEMIA PATIENTS SUPPORT GROUP CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 0HS The next
Category: Getting help

Replies: 1

Last updated: 10 July 2015
wshi2001 on 11 June 2015

Category: Side effects

Replies: 2

Last updated: 12 June 2015

Can I switch back to Imatinib from Dasatinib?
by wshi2001 (Jun 12)

Thanks Martin for sharing your experience. I did raise my quaestion in the forum, whether it is necessary to change from Imatinib to Dasatinib in the first place. Many fellow CMLers have also said

by martin1960 (Jun 11)

Hi William,

I have also experienced slow response but have a totally different experience to you.

My Bcr/Abl results at diagnosis 06/12/2013 were 66.5%, dropping to 10.9% by 17/04/2014

by wshi2001 (Jun 11)

hi, All, A question has been puzzling me for the last 2 months and wonder if anyone can help or somebody who has similar situation could give some advice . I was given Imatinib for the first 6
Category: Side effects

Replies: 2

Last updated: 12 June 2015
chrissie on 9 June 2015

Category: Organising your life

Replies: 8

Last updated: 26 June 2015

Timing for Imatinib
by fehr (Jun 26)

When on 400mg daily, I split the pill in half and had half after breakfast and half after evening meal. That greatly reduced side effects and my PCR test results stayed at just above undetectable

by nigel (Jun 11)

Hi, if I have a large lunch, I will have some toast or something on the night to take my pill. Often I still feel full from lunch time, no issues personally with this

by darley (Jun 11)

I'm also last thing at night.

by Richard42 (Jun 11)

In my case, I had real problems with nausea to begin with, even being really quite sick on a couple of occasions - it was the worst nausea ever. What I found worked for me was taking imatinib a
Category: Organising your life

Replies: 8

Last updated: 26 June 2015
Rosary on 6 June 2015

Category: Side effects

Replies: 1

Last updated: 7 June 2015

CML, Lupus, sojrens, FM, Luckoclastic Vasculitis and microsidic anemia
by sandy craine (Jun 7)

Hi, I am sorry you have so many issues to deal with as well as CML. As you are in the US you might find the following organisation of some help with how you can source financial support for your

by Rosary (Jun 6)

I was diagnosed last year with Lupus and just 3 months ago CML. I had never heard of this before and was shocked that I was diagnosed with it. I kept telling my Primary NP that I just didn't
Category: Side effects

Replies: 1

Last updated: 7 June 2015
Jimbo on 3 June 2015

Category: Getting help

Replies: 2

Last updated: 5 June 2015

Newly Diagnosed
by sandy craine (Jun 5)

Hi and welcome to this forum. I agree with Darley that before anything you should take a deep breath and consider your options which, for the vast majority of people diagnosed in chronic stage, are

by darley (Jun 4)

The shock of diagnosis is now a distance memory to me. I'm one of the world's longest survivors :)
IF you're going to have to have a cancer than this one is not too bad in the great scheme of

by Jimbo (Jun 3)

I have recently been diagnosed with CML and wanted to know if there are some recommended Consultants in the UK ( ideally in the North). I have read that not all general haematology consultants are
Category: Getting help

Replies: 2

Last updated: 5 June 2015
KS on 31 May 2015

Category: Side effects

Replies: 3

Last updated: 4 June 2015

Can Tasigna be hastening mom's dementia?
by darley (Jun 4)

I'm thinking "coincidence". A most unfortunate coincidence. I really feel for you having to cope with your mum's dementia. The thing is with dementia that it's somewhat unpredictable and

by KS (Jun 3)

Thank you Sandy,

Maybt. She is significantly more drugged on it - for instance, she used to get a second wind around 11 at night and have all this energy, and that has stopped (Which

by sandy craine (Jun 2)

Hi, I am sorry your mother is having to battle CML as well as dementia. It is not easy for you I am sure. However, I do not know of and TKi -including nilotinib (Tasigna) causing progression of

by KS (May 31)

Hi, Mom (76 years old) has been taking Tasigna (300 mg per day) for 8 months (along with a number of other unrelated meds for thyroid, blood pressure and such). The main side effects she has are
Category: Side effects

Replies: 3

Last updated: 4 June 2015
Gst on 30 May 2015

Category: Treating CML

Replies: 4

Last updated: 5 June 2015

PCR levels have gone up and possibility of a stem cell transplant
by sandy craine (Jun 5)

Hi,

You are not yet at the full dose of bosutinib (500mg) so if I were you I would want to try that before making any decision to go to transplant.

If your mutation test (which I thought

by darley (Jun 4)

I was diagnosed a long time ago and before the likes of imatanib etc.
I was on anything and everything available at that time and including interferon A and all to no avail.
I ultimately had a

by Gst (Jun 1)

Hi Luisa,
So nice to hear from you and reading your response. Just to start with I had a bone marrow biopsy done today at Kings and should get the results in 2 weeks time. Its so good that you have

by Luisa (May 31)

Hi,

Your situation sounds very familiar - the same thing is happening to me.Diagnosed over 2 years ago, I have been on bosutinib for over a year after failing to respond satisfactorily to
Category: Treating CML

Replies: 4

Last updated: 5 June 2015
Mavis on 27 May 2015

Category: Side effects

Replies: 1

Last updated: 2 June 2015

Disatinb
by sandy craine (Jun 2)

I am sorry your daughter is suffering. I am sure she will see some kind of resolution of the initial side effects as the weeks go on. Sometimes it take a while for the body to adjust. If she can, I

by Mavis (May 27)

My daughter has recently started taking disatinib but she is suffering from horrendous headaches and being violently sick. Has anyone else suffered such side effects and if so how long did it last
Category: Side effects

Replies: 1

Last updated: 2 June 2015
Mr Bill on 3 June 2015

Category: Blood tests

Replies: 1

Last updated: 5 June 2015

Questions about interpreting Lab results
by sandy craine (Jun 5)

Hi Blll,
You might like to read our PCR primer... link at the bottom of the left hand menu.... which might explain some of the intricacies of PCR analysis etc.
I think that your results look very

by Mr Bill (Jun 3)

Hello all, I have had CML now for 8 years caught early and results are typically good and generally well tolerated (On Imatanib 400 mg.) I have the PCR testing every 6 months now and % results are
Category: Blood tests

Replies: 1

Last updated: 5 June 2015
Briareos on 25 May 2015

Category: Other conditions

Replies: 1

Last updated: 28 May 2015

CML and BMT survivor
by darley (May 28)

I had a matched unrelated transplant in 1996. It was really tough. REALLY tough. Indeed I was seriously ill for 3 years and then just ill for a year and then in year 5 started to think maybe it

by Briareos (May 25)

For nearly ten years I battled chronic myeloid leukemia until the daily chemotherapy became so toxic that I had to undergo a procedure that was a coin toss of success: a bone marrow transplant. For
Category: Other conditions

Replies: 1

Last updated: 28 May 2015
Stephanie K on 21 May 2015

Category: Side effects

Replies: 2

Last updated: 3 June 2015

Change from Nilotinib to Imatinib
by Stephanie K (Jun 3)

Hi Chris,
Just wanted to say thanks for taking the time to respond, very much appreciated.
Your reply has given both my husband and I a lot to think about and I will definitely ask the question as

by cdw5000 (May 23)

Hi,
I' sorry to hear your husband is not tolerating Tasigna well. I am a little surprised by the doctor's suggestion of a move to Gleevec. Novartis make both medications and Tasigna is the second

by Stephanie K (May 21)

Hi all, My husband has been on Nilotinib (Tasigna) for nearly three years, his PCR is at 0.043 so its doing its job. Unfortunately he has suffered from lots of side effects, some of which I have
Category: Side effects

Replies: 2

Last updated: 3 June 2015
anjanahogan on 20 May 2015

Category: Blood tests

Replies: 1

Last updated: 20 May 2015

3-log at Hammersmith??
by sandy craine (May 20)

Hi Anjana,
HH can give results on the IS but they do not always do so. Their methodology is very sensitive and currently detects down to 5 logs. Their Eq% MMR is 0.045 so from that their conversion

by anjanahogan (May 20)

Hi Sandy and Group, I am currently in contact with one of Prof. Apperley's patients from India. I would like to know what is 3-log or MMR at Hammersmith? Does Hammersmith follow the
Category: Blood tests

Replies: 1

Last updated: 20 May 2015
Anna123 on 18 May 2015

Category: Getting help

Replies: 2

Last updated: 28 May 2015

Employer Support?
by darley (May 28)

My partner is an expert in this area. If you want I can get her to do you a detailed response about your employment rights and legislation.
Quite simply though and to answer your questions. When

by cdw5000 (May 23)

Hi,
Sorry to hear you're feeling a bit rubbish and that your boss is an apparently heartless git. I'm fortunate in that my boss is really supportive. I usually go above and beyond, so any time off

by Anna123 (May 18)

Hi all just looking for a bit of virtual support really. I have recently been feeling ill, throat infection, general cold/feeling rubbish but have been trying my hardest to keep going - employer is
Category: Getting help

Replies: 2

Last updated: 28 May 2015
Parklife on 16 May 2015

Category: Side effects

Replies: 2

Last updated: 20 May 2015

Dasatanib or not?
by Parklife (May 20)

Hi Sandy
Many thanks for your input, I have now decreased the Pregabalin to half dose in a bid to come off to rule that out. Just strange as never had a problem before... That said I am not sure if

by sandy craine (May 19)

Hi John.... sorry to hear you still have such a high level of pain in spite of changing to dasatinib!
I took a quick look at the side effects of pregabalin as you had already looked at dasatinib

by Parklife (May 16)

Hello everyone. Wow, here I am again, with yet another dilemma. I just want to gauge peoples thoughts who have experienced being on Dasatinib or know of others with similar issue. Here is my story
Category: Side effects

Replies: 2

Last updated: 20 May 2015
Ria Roza on 14 May 2015

Category: Uncategorised

Replies: 1

Last updated: 14 May 2015

Pleural effusion
by sandy craine (May 14)

Hi Ria,
I think it is quite a difficult question to answer---- 'what shall I do?' but I will try to help you make your decision if I can.
1. how many month have you been on a treatment break?
2.

by Ria Roza (May 14)

Dear group.
Please will you give me your advice in the following problem I'm facing now.
After being diagnosed in sept. 2001 and being treated with Hydrea, interferon and 11 years Gleevec,
Category: Uncategorised

Replies: 1

Last updated: 14 May 2015
sandy craine on 11 May 2015

Category: Treating CML

Replies: 25

Last updated: 11 June 2015

Question 4
by wshi2001 (Jun 11)

I stopped twice since dx. First time, 2 months into Glivic treatment my platelets went below 40, in fact white cell is also down to 1. After consulting with my doctor, I stopped for 1 week followed

by Parklife (Jun 7)

* Are you tempted to try stopping treatment/dose reduction outside of a clinical trial?
I am not on trial but hope I can add my two pennies worth so to speak. Yes to the question and I have done on

by chrissie (May 28)

Hi Simon
You mention in your post that it's hard to cut a 400mg tablet in half. Did you know there is such a thing as a tablet cutter - available in any pharmacy? It cuts it inside a container so

by darley (May 28)

Are you tempted to try stopping treatment/dose reduction outside of a clinical trial?
No way! Never! Not in a month of Sundays! That would be stark staring bonkers!
I went on Imatanib when it
Category: Treating CML

Replies: 25

Last updated: 11 June 2015
sandy craine on 8 May 2015

Category: Uncategorised

Replies: 1

Last updated: 8 May 2015

CML Horizons Meeting- Barcelona
by nigel (May 8)

Initially may I say once more my thanks for the opportunity to attend conference this year, and to be able to represent CML Support group was especially a privilege. As always The CML Advocates

by sandy craine (May 8)

See link below for presentations that are available for download. Nigel Deekes kindly agreed to represent CML Support Group at this years meeting and I would like to thank him for taking part on our
Category: Uncategorised

Replies: 1

Last updated: 8 May 2015
Basil from RSA on 7 May 2015

Category: Uncategorised

Replies: 1

Last updated: 9 May 2015

Basil from South Africa - update
by sandy craine (May 9)

Once again, great news Basil. I think Des is in the very same position- at least 6 years from stopping. Hopefully we will learn from the various stopping studies exactly why some can successfully

by Basil from RSA (May 7)

Hi all.
OK, so the time we all dread happened today for me.

Today was my 6 monthly visit to my Haematologist for my check up and of course to get the results of my last RT-QPCR test of two
Category: Uncategorised

Replies: 1

Last updated: 9 May 2015
Stuart Johnston on 7 May 2015

Category: Uncategorised

Replies: 12

Last updated: 28 May 2015

Latest results for destiny
by darley (May 28)

I've just completed month 8 on half dose.
Sorry to hear your counts haven't been stable now you've further reduced. I'd be most interested to know what happens now and if and when you increase the

by sandy craine (May 19)

Chrissie... firstly, great you are still on the trial.

Secondly, I think there are others who have seen such fluctuations after de-escalation and then seen the PCRs stabilize again. Maybe this

by chrissie (May 19)

As I posted below, I expected to have to go back onto full dose Imatinib after 6 months on half dose on DESTINY. My results seem to be all over the place:
March 4th -0.09

April 7 - 0.07

by Stuart Johnston (May 12)

Looks like we are in the same boat.

Like you say, plenty of options positivity is the operative word.

Keep us informed as to how things go.
Good luck with your treatments.
Stuart
Category: Uncategorised

Replies: 12

Last updated: 28 May 2015