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Ali Loram on 17 May 2010

Category: Uncategorised

Replies: 5

Last updated: 21 May 2010

Again, severe reaction on Nilotinib.
by sandy craine (May 21)

Dear Ali.... if your pcr is very low then low dose IFn would be something to consider. I know there is a trial in Germany that has effectively kept low pcr status stable with low dose IFN... once

by Ali Loram (May 19)

Hi Sandy & all & thanks for your posts.

Sandy, The Dr at the hospital is reluctant to put me back on steroids as I have had so much over the last few week. I saw my consultant yesterday

by michael (May 19)

Yes Dasatinib can give you pleural effusion, one in ten chance,but the possible gains over a transplant are massive,with monitoring the risks to health are quite low.That said its

by sandy craine (May 19)

Dear Ali.... I am sorry to hear the rash has come back. However it might be that you could control it with a small amount of steroids for a short time? or is that not possible?

I would not
Category: Uncategorised

Replies: 5

Last updated: 21 May 2010
ian hinley on 17 May 2010

Category: Uncategorised

Replies: 1

Last updated: 17 May 2010

Combination therapy targets stubborn leukemia stem cells
by ian hinley (May 17)

http://www.eurekalert.org/pub_releases/2010-05/cp-ctt051010.php

by ian hinley (May 17)

Combination therapy targets stubborn leukemia stem cells

New research discovers a combination of drugs that may prove to be a more effective treatment for a lethal form of leukemia. The
Category: Uncategorised

Replies: 1

Last updated: 17 May 2010
Bhiru on 14 May 2010

Category: Uncategorised

Replies: 1

Last updated: 14 May 2010

TKIs and depression
by Bhiru (May 14)

http://jco.ascopubs.org/cgi/content/full/27/2/312

Journal of Clinical Oncology

by Bhiru (May 14)

I came across this interesting paper that I thought I would share with the group. It was written by an oncologist, and describes a number of case studies of people who were prescribed either
Category: Uncategorised

Replies: 1

Last updated: 14 May 2010
Jean on 13 May 2010

Category: Uncategorised

Replies: 10

Last updated: 26 May 2010

Thank you
by yogiB (May 26)

I have had a few days of feeling very lacking in spark and find it difficult to find support.

I don't want to winge to children (37,33 and 30) as their lives a very full.

Am

by karen (May 18)

Hi Jean

Let us all know how you get on with your second opinion. It's the last thing you want to deal with when you are already feeling bad but I guess employers have to have a 'party

by Jean (May 17)

Hi everyone

Again, my thanks to your helpful replies. Unfortunately my employers are not willing to wait any longer to see if I am likely to respond more positively to treatment

by V (May 16)

I'm interested to hear these discussions as I have been on Glivec for a number of years and am finding the fatigue very debilitating, to the point where I am having to seriously consider
Category: Uncategorised

Replies: 10

Last updated: 26 May 2010
Bhiru on 9 May 2010

Category: Uncategorised

Replies: 2

Last updated: 10 May 2010

Nilotinib and Food
by Ali Loram (May 10)

Hi Bhiru, I too am on Nilotinib & have to be very careful about fasting times. When I swapped from Glivec my consultant made it quite clear that it is strictly 2 hours before and 1

by sandy craine (May 9)

Dear Bhiru, As far as I am aware the reason you need to be quite strict with fasting before taking the drug is that food- particularly with a high fat content- increases the absorption of

by Bhiru (May 9)

Hi All,

It's been a while since I posted as we've been recovering from the campaigning frenzy of earlier this year (fingers crossed that comes good in the end despite all the delays).
Category: Uncategorised

Replies: 2

Last updated: 10 May 2010
fish4 on 6 May 2010

Category: Uncategorised

Replies: 3

Last updated: 6 May 2010

Gout as a side effect of Tasigna
by vickiep (May 6)

Friend of mine had gout, was teetotal, but drank lemonade and apparently citrus drinks are bad...also he worked at a Garden Centre & was also suffering some dehydration in the heat of the

by fish4 (May 6)

Thanks Karena

Have trawled the web for diets and for the last week have cut out all the things the diet sheets tell you to

Lots of things I like i have cut out. Fortunately don't

by karen (May 6)

Hi Trevor

Sorry to hear about the gout - it really is painful. My other half gets it really badly (although that has nothing to do with drugs) and the only thing that helps is diet - avoiding

by fish4 (May 6)

Hi All

I am on Tasigna and have been on it for 18 months now.

All of a sudden if gotten a bad case of gout in my feet It is most painful My onc says it could be a side effect but has
Category: Uncategorised

Replies: 3

Last updated: 6 May 2010
sandy craine on 5 May 2010

Category: Uncategorised

Replies: 5

Last updated: 3 June 2010

FAD delayed again
by sandy craine (Jun 3)

Hello All,

still no news on the FAD. I think this might be a case of no news is good news but we shall see. I am sure that NICE do not want adverse publicity at the moment given that the con/lib

by irenekallison (Jun 2)

Funny, the same thought went through my mind, Karena, when I heard the alcohol story!

Irene

by karen (Jun 2)

Do you think that NICE releasing controversial statements about alcohol will be used to cover up any FAD they may issue about CML or am I just getting cynical?!

K

by sandy craine (May 29)

Hi Bob, I have heard nothing more from NICE regarding the likely date. I am not holding my breath. If and when I hear anything about the FAD I will let you know! I am hoping that we get some
Category: Uncategorised

Replies: 5

Last updated: 3 June 2010
cinzia on 2 May 2010

Category: Uncategorised

Replies: 1

Last updated: 3 May 2010

imatinib side effects and interactions with other drugs
by sandy craine (May 3)

Dear Cinzia, I am sorry to hear your boyfriend has such worrying side effects. Please let me know where he is being treated. His doctors really do need to communicate with an expert CML clinician

by cinzia (May 2)

Hi to everybody.

From November 09 -when my 35 years old boyfriend was diagnosed with MCL- I’m reading this interesting forum and I thank you for the precious information you share. I’m
Category: Uncategorised

Replies: 1

Last updated: 3 May 2010
Des on 1 May 2010

Category: Uncategorised

Replies: 3

Last updated: 3 May 2010

Still PCRU
by sandy craine (May 3)

Dear Des... just back from a short break and saw your news and I am really glad to hear that you are still stable without drug therapy. I am not sure that the research is proving that interferon

by liz (May 1)

Brilliant.... Congratulations, keep up the good work! I always keep a look out to see how you're doing. Keep updating us all on your great news.

Liz x

by ADJL (May 1)

Heartfelt congratulations- I hope that more and more of us will find ourselves in your position in our battles with CML... xx

by Des (May 1)

It was my 7 year anniversary on 29th April of diagnosis with CML. Like most others at that time I was given the 4-6 years prognosis, so as I often remark, I am now well past my "sell-by
Category: Uncategorised

Replies: 3

Last updated: 3 May 2010
yogiB on 28 April 2010

Category: Uncategorised

Replies: 1

Last updated: 29 April 2010

strange bruise! info needed?
by cmlblogger (Apr 29)

bx - not specific to that area but when i do get bruised I definatly get more bruising and for longer than prior to DX

not sure if that helps at all

rob

by yogiB (Apr 28)

For the past two months I have had a dark persistent 'bruise' by my right ear, just under the cheek bone. I have had a long time jaw problem and was wondering if there may be a general
Category: Uncategorised

Replies: 1

Last updated: 29 April 2010
ali on 28 April 2010

Category: Uncategorised

Replies: 1

Last updated: 29 April 2010

Night sweats
by michael (Apr 29)

It might be worth getting your husband sugar levels checked,Diabetes can cause night sweats,thirsty and more visits to the toilet?

by ali (Apr 28)

My husband is suffering from major night sweats. First had them 6 years ago when diagnosed and then they stopped after about 1 month on Glivec but for the last two weeks its been really bad. Bcr/
Category: Uncategorised

Replies: 1

Last updated: 29 April 2010
Bill on 27 April 2010

Category: Uncategorised

Replies: 7

Last updated: 3 May 2010

Preganant while Spouse on Glivec
by sandy craine (May 3)

Hi Bill,

during the pre-human clinical trials it was found that IM could cause foetal abnormalities during the first trimester, so this is why woman only are not advised to get pregnant whilst

by bc (Apr 29)

Have read this forum since diagnosis (Nov 2007). Fertility issues were one of the things that were important to me and my wife at that time, so thought i'd chip-in with our experiences as it

by cmlblogger (Apr 28)

that I got my advice from the Doctors at the Hammersmith and can pass on contact details if needs be

email me at robmar@microsoft.com

also when i told them of our good news, i asked if there

by cmlblogger (Apr 28)

Adam - no problem at all

Currently on 400mg Imatinib, for last 3 years curenty at 0.125PCR

I have no evidence at all, we did struggle to concieve for both children taking about 12 months each
Category: Uncategorised

Replies: 7

Last updated: 3 May 2010
dmc23 on 26 April 2010

Category: Uncategorised

Replies: 8

Last updated: 28 April 2010

Bone Marrow Biopsy And Pain Management
by Vangogh (Apr 28)

Hi

I was dx in June 2008 and have had a few BMB's at Kings with a local anaesthetic, which is uncomfortable but ok until they bend the needle. (4 times). I was offered full anaesthetic but

by michael (Apr 27)

I would expect you to have bone marrow taken every 3 months until your counts are really low,To my mind this is what you should expect if your getting the best treatment ,it keeps your

by Steven D (Apr 27)

Hi

Once your PCR is going in the right direction bmb are thought not to be necessary as pcr's look at 100,000 to 1,000,000 cells and a bmb only looks at 25. Hammersmith I belive

by PhilB (Apr 27)

Reminds me of when I broke my leg in an RTA many years ago. They gave me entenox whilst they reset the leg, but before I could get a breath from it the tube came away from the mask. I
Category: Uncategorised

Replies: 8

Last updated: 28 April 2010
ADJL on 26 April 2010

Category: Uncategorised

Replies: 5

Last updated: 3 May 2010

Not alone
by sandy craine (May 3)

Dear Adam,

Thanks for your post about your experience having a diagnosis of CML. I am so glad that you have found a good centre for your treatment and that you have good support given that you

by kate32 (Apr 28)

Hi Adam

That make sense to me too. I understand where you are coming from! It takes a while to get your head around things and you can only do things when your ready. It took me

by ADJL (Apr 28)

Hi Kate,

Thanks for responding to my post!!

I'm glad to hear that your treatment is still so effective 18 months on from diagnosis.

It would be nice to meet up at some stage, but

by kate32 (Apr 27)

Hi Adam

This is my first post on this forum too! I am 34 and I also live in Bristol. I am under Frenchay/Southmead Hospital. I was diagnosed in Nov 08 and am mostly doing well and am
Category: Uncategorised

Replies: 5

Last updated: 3 May 2010
ian hinley on 26 April 2010

Category: Uncategorised

Replies: 1

Last updated: 26 April 2010

After 4 Months 0.5 log reduction
by zaviemiller (Apr 26)

Hi Ian,

Welcome to the club that nobody really wants to be a member of.

I would make sure that you get a copy of all your test results. It will allpw you to follow your progress. They are very

by ian hinley (Apr 26)

Hi all, had my first results since starting Gleevec today and my Haematologist said I had a 0.5 log reduction but didn't have the figures with him ?!?! He said he was looking for
Category: Uncategorised

Replies: 1

Last updated: 26 April 2010
angela on 26 April 2010

Category: Uncategorised

Replies: 6

Last updated: 23 May 2010

Travel Insurance - Shop Around
by goofyfoot (May 23)

£1480 for single trip to New York He was diagnosed nearly 4 years ago and remains stable and otherwise healthy

This is outragous! Has anyone please got any ideas of other insurance

by Dennis (Apr 29)

Obviously, the reason some people get refused insurance and the reason we get different quotes, is down to the answers we give. For instance, I'm always asked if I am currently on

by angela (Apr 28)

Hi Michelle,

Thanks very much for your kind words.

The travel company is called Orbis Insurance Services based in Bexhill, Sussex. Tel: 01424 217107

They were really helpful and when you go

by Bill (Apr 27)

Hi. I bought insurance from Medici

www.medicitravel.com

They were really helpfully and very cost effective. I bought mine for the year. I cannot remember but I think the whole family and
Category: Uncategorised

Replies: 6

Last updated: 23 May 2010
Ali Loram on 26 April 2010

Category: Uncategorised

Replies: 4

Last updated: 4 May 2010

Stopping Nilotinib & dose reduction.
by Ali Loram (May 4)

I have just finished the third dose of steroids via IV. I have never had such an extreme reaction before. My face & neck were burning red sore & swollen. My eyes had started to swell and

by sandy craine (May 3)

HI Ali,

I hope the rash and other effects clear up soon. Also hope you can try the lower dose as it looks like it might be fine. Remember the standard dose of dasatinib began at 140 mg and then

by Bhiru (Apr 30)

Jed is also now on the 300mg dose which has helped with side effects.

At the time that he changed doses we were told about some recent research that had been done to compare outcomes of

by lynnsch (Apr 28)

Hi Ali,

I recently moved over to Nilotinib and I am on 300mg. I believe that there are a few of us who are on this dosage and achieving good responses but with fewer side effects.

I hope
Category: Uncategorised

Replies: 4

Last updated: 4 May 2010
Pennie on 23 April 2010

Category: Uncategorised

Replies: 2

Last updated: 23 April 2010

Current advice on changing from one 2nd generation TKI to another please
by michael (Apr 23)

Sorry to hear your news Pennie,contact Diabetes uk for advice, they will be outraged if your access to Dasatinib is denied,especially since the costs are about the same.I am diabetic so I

by sandy craine (Apr 23)

Dear Pennie... I am so sorry to hear that you have developed diabetes! what a challenge! Regarding the problem with changing drugs and PCR's etc. I suggest that you contact Kate Spall... who

by Pennie (Apr 23)

I am in the unhappy situation of probably having to change from Tasigna to Dasatinib, due to onset of diabetes. As this counts intolerance, what is the current advice on approaching PCT for
Category: Uncategorised

Replies: 2

Last updated: 23 April 2010
Pennie on 23 April 2010

Category: Uncategorised

Replies: 1

Last updated: 26 April 2010

Current advice on changing from one 2nd generation TKI to another please
by Ali Loram (Apr 26)

Pennie, please could you email me privatly? ali@loram2028.fsnet.co.uk

Thanks

by Pennie (Apr 23)

I am in the unhappy situation of probably having to change from Tasigna to Dasatinib, due to onset of diabetes. As this counts intolerance, what is the current advice on approaching PCT for
Category: Uncategorised

Replies: 1

Last updated: 26 April 2010
chrissie on 20 April 2010

Category: Uncategorised

Replies: 3

Last updated: 21 April 2010

PCR results delay
by chrissbb (Apr 21)

Hi My results go to Leeds, and it has been over 4 weeks since i have had my blood test, i still have no results.

I,m hoping to hear something soon, i know we get anxious, and the delay only

by irenekallison (Apr 21)

I have had a couple of 'late' results + lost in post once. If late my consultant has phoned thro for a FAX'd copy and phoned me with the results so try getting the consultant to chase

by karen (Apr 20)

Mine normally are back in about 3 weeks but saying that I have had 2 occassions where my blood has gone off in the post (!) so no results and once it went missing in the post (!) so never assume.

by chrissie (Apr 20)

My blood went to Hammersmith on March 12 for the PCR results but the results aren't back yet although my local hospital thought 2-3 weeks. I'm wondering how long it usually takes to get
Category: Uncategorised

Replies: 3

Last updated: 21 April 2010