You are here

Forum

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
AnthonyI on 29 April 2015

Category: Uncategorised

Replies: 4

Last updated: 4 May 2015

Low WBC During First Few Weeks of Imatinib?
by Annie Kennedy (May 4)

Sorry for slow reply - white counts came up quickly on neupogen - within a week I'd say (although this was 11 years ago and , happily, a distant memory!) I am sure your mum's white counts will

by AnthonyI (May 1)

After two shots of neupogen, her WBC has not really improved that much. She is going for another shot tomorrow and another on Monday. How long did it take for you to see improvement with the

by AnthonyI (Apr 30)

Hi, Annie,
Thank you so much for your response. Your testimony and reassuring words have comforted me and my mother immensely. She has been experiencing some fatigue lately, which also has me a

by Annie Kennedy (Apr 30)

Sandy's reply to the query above sets out a very good explanation of why low white counts happen on Glivec and that it is very common in early treatment - there is nothing untoward here but it is a
Category: Uncategorised

Replies: 4

Last updated: 4 May 2015
chrissie on 28 April 2015

Category: Uncategorised

Replies: 3

Last updated: 2 May 2015

DESTINY results finally back
by chrissie (May 2)

Thanks to both Sandy and Darley for your support.
Best

Chrissie

by darley (May 1)

I'm still doing well too :)

by sandy craine (Apr 28)

What a great bit of news. I know of another person who thought they had lost MMR but the subsequent PCR result proved like yours to be back on track at the half dose.
I am so glad for you Chrissie

by chrissie (Apr 28)

Hi All
I've started a new thread as the DESTINY one seemed rather long. After waiting 20 days I finally have my results back from HH/trial office and it seems my PCRs are down again to 0.07 (from 0.
Category: Uncategorised

Replies: 3

Last updated: 2 May 2015
The Wife on 28 April 2015

Category: Treating CML

Replies: 3

Last updated: 25 May 2015

Imatinib/ Bosutinib Trial
by Fran (May 25)

Hi,

I'm on the same trial - I was diagnosed on Tuesday and started taking bosutinib on Saturday (quite scary how quickly things are moving - I only went to my GP with suspected anaemia five

by sandy craine (Apr 30)

Hi and welcome,
I totally endorse what Olivia has said about clinical trials for CML. Both imatinib and bosutinib are very effective treatments for chronic stage CML with bosutinib being one of the

by Olivia (Apr 29)

Hello, and welcome to the group. This site is wonderfully useful, and most if not all your questions will get some sort of answer from someone who has faced similar problems.
For myself, I have

by The Wife (Apr 28)

My husband was diagnosed with CML 12 days ago- so we're new at this. He has yet to start treatment. He has been offered a chance to enter a clinical trial designed to show whether Bosutinib is a
Category: Treating CML

Replies: 3

Last updated: 25 May 2015
Lucas on 20 April 2015

Category: Uncategorised

Replies: 5

Last updated: 2 May 2015

good news!
by ginger (May 2)

Dear Sandy, Lucas, et al,
Thanks for bearing with me when my test results were at 0.385 at 3 mos, 0.365 at 6 mos, 0.13 at 9 mos, 0.11 at 12 mos and now happy, I think to report, 0.0455 at 15 mos.

by Lucas (Apr 27)

hi, william, hope everything's ok with you. i had a poor response on glivec - i had a response, but it was too slow, my pcr was 6% when i changed (7 months and a half into therapy). i was dx in

by wshi2001 (Apr 25)

It's indeed a great news, Lucas. I remember you also had some turbulance at the beginning, but you have finally achieved something we are all hoping to achieve. I have just switched from Glivec to

by Lucas (Apr 21)

thank you so much, sandy. i know that my lab is not so sensitive, so i must be around 4 logs of response, but, hey, that's amazing!! i rope i can go to 600mg of nilotinib in some years but i'm
Category: Uncategorised

Replies: 5

Last updated: 2 May 2015
Steven Davies on 16 April 2015

Category: Getting help

Replies: 2

Last updated: 25 May 2015

Hammersmith Patitent/Carer Meeting Saturday 30th May 2015
by Steven Davies (May 25)

Please book now for the Hammersmith Patient Carer meeting this Saturday

by Steven Davies (Apr 27)

Places going fast so please book early.

by Steven Davies (Apr 16)

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 meeting of
Category: Getting help

Replies: 2

Last updated: 25 May 2015
markmcd on 26 April 2015

Category: Side effects

Replies: 6

Last updated: 19 May 2015

Imatinib not working well and Nilotinib not tolerated - any advice/suggestions?
by sandy craine (May 19)

Hi Mark... this is good news - back on full dose without a return of the initial problems. Shows that when you have a clinician and a pharmacist who are 'engaged' you can be sure you are in good

by markmcd (May 16)

Thanks for your feedback Sandy & Lucas.
A brief update - hopefully of use to someone in future.
Discussed with my Haematologist and the Pharmacist at the hospital, and switched from the

by Lucas (Apr 28)

hi, mark. somehow i'm lucky and don't have many side effects from those drugs. on nilotinib i went to 800mg and never had to lower the dose. i just have a little fatigue, some skins problems and low

by sandy craine (Apr 28)

Mark... welcome. It's good that you have found this forum as there are many on here who can advise. I think all your questions are very relevant and will try to answer as best I can (although Lucas
Category: Side effects

Replies: 6

Last updated: 19 May 2015
David Ryner on 13 April 2015

Category: Treating CML

Replies: 1

Last updated: 6 May 2015

Ponatinib approved for use in Scotland
by David Ryner (May 6)

CML Support has now written to all 14 local Health Boards in Scotland advising them of the SMC's recommendation for the use of ponatinib for the treatment of CML in all the indications (or clinical

by David Ryner (Apr 13)

Very good news today from the NICE equivalent in Scotland, the Scottish Medicines Consortium (SMC), with ponatinib approved for use in Scotland in what are called all its licensed indications. That
Category: Treating CML

Replies: 1

Last updated: 6 May 2015
Steven Davies on 9 April 2015

Category: Uncategorised

Replies: 1

Last updated: 10 April 2015

Denial of ponatinib by the CDF fund in 12 out of 14 applications
by David Ryner (Apr 10)

Kris is correct in pointing out the abysmal success rate of Cancer Drugs Fund Individual Funding Requests (ICDFRs), made within overall Cancer Drugs Fund (CDF) procedures, for the treatment of CML

by Steven Davies (Apr 9)

Just seen this on face book about the denial of ponatinib by the CDF a
Ponatinib Access: Denied

by Kris Griffin

14 patients who requested ponatinib (from April 2013 to March 2015), just
Category: Uncategorised

Replies: 1

Last updated: 10 April 2015
Parklife on 24 April 2015

Category: Uncategorised

Replies: 5

Last updated: 28 April 2015

Bosutinib vs Dasatinib choice for side effects
by sandy craine (Apr 28)

Hi John,
Very glad to hear you have been able to make a choice- pretty rational to try a TKI that targets a slightly different pathway- although dasatinib is a dual inhibitor and although it does

by Parklife (Apr 27)

Hi guys.
Thanks Sandy and Chris for all your input.
I have spoken to my Consultant and he thinks I should go for a low dose Dasatinib. I collect script as soon as paperwork completed.
I mentioned I

by cdw5000 (Apr 27)

just a quick reply (late for work), but Dasatinib seems like the next obvious step. I've read (anecdotally) about several people maintaining an adequate response on a very low dose of Dasatinib.
As

by Parklife (Apr 26)

Hi Sandy
Many thanks for getting back with your thoughts and advice.
It may be worth me pointing out that my PCR did drop and stabilise whilst being on Nilotinib over the rough year I was assigned
Category: Uncategorised

Replies: 5

Last updated: 28 April 2015
shaynalee on 7 April 2015

Category: Uncategorised

Replies: 5

Last updated: 13 April 2015

fertility and sprycel in males? please help
by David Fitz (Apr 13)

Hi, the NHS (National Health Service) is the publicly funded health service in the UK.
David.

by shaynalee (Apr 13)

David, I dont know what NHS is... we are in the united states, I just happened across this forum when I was doing research and found some of the topics very helpful. We were told by 2 different

by David Fitz (Apr 10)

Hi,
I'm a few years older than your husband, but in a similar situation. The research in inconclusive whether there is a fertility issue in men on Sprycel / dasatinib - perhaps there is no problem

by sandy craine (Apr 9)

Hi,

I am sorry to hear your husband has been diagnosed with CML at the young age of 25.
As Nigel has said, Sprycel (dasatinib) is one of 5 very effective TKIs, and it is more than likely that
Category: Uncategorised

Replies: 5

Last updated: 13 April 2015
sandy craine on 7 April 2015

Category: Uncategorised

Replies: 1

Last updated: 8 April 2015

Side effects of targeted treatments: clinicians' perceptions, patients' realities
by darley (Apr 8)

Oh well it keeps someone occupied

by sandy craine (Apr 7)

The side effects of targeted drugs are poorly documented, and their impact on patients frequently seriously underestimated and undertreated. Efforts to address these issues could improve survival as
Category: Uncategorised

Replies: 1

Last updated: 8 April 2015