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chrissie on 30 May 2010

Category: Uncategorised

Replies: 4

Last updated: 1 June 2010

Sunburn and light sensitivity?
by angela (Jun 1)

Hi Chrissie,

I also suffer with sunburn now and put on high factor cream. I think my skin is also thinning which may well add to the fact that I burn more frequently. The thinning

by sue d (May 30)

I have been on gleevic for about 6 years and have been more sensitive to the sun, even just hanging our washing I was always lead to believe that we were meant to take more care and use a high

by fehr (May 30)

I understand that increased sensitivity to sun is normal with Glivec. However, whilst I don't tan as easily as I used to and can now get burned, I do tan. I find that

by jacqui from Colchester (May 30)

Hi Chrissie

You are not alone although I am on dasatinib and I reported the same things to my consultant - I guess it is something we just have to live with

Regards jacqui
Category: Uncategorised

Replies: 4

Last updated: 1 June 2010
Bhiru on 28 May 2010

Category: Uncategorised

Replies: 1

Last updated: 29 May 2010

Asda selling imatinib at cost price
by sandy craine (May 29)

Thanks for posting this Bhiru. I must say that I agree with the following comment from Macmillan.

"Mike Hobday, head of campaigns and policy at the charity Macmillan Cancer Support, said:

by Bhiru (May 28)

Just seen this article in the Times about the provision of some cancer drugs at cost price for those on private prescriptions.

http://www.timesonline.co.uk/tol/life_and_style/health/
Category: Uncategorised

Replies: 1

Last updated: 29 May 2010
CheryAnnes on 28 May 2010

Category: Uncategorised

Replies: 2

Last updated: 2 June 2010

Petition to the FDA calling for clarification Omacetaxine Mepesuccinate, and non-standardized in-vitro diagnostics.
by CheryAnnes (Jun 2)

Thank you to all who have signed the petition!
We need more signatures if we intend to make sure the FDA hears our voices.
This issue is of a very critical and vital nature

by sandy craine (May 29)

Hi Cheryl-anne,

thanks for taking time to post the link to the petition on this forum. I had tried to find the link via your Website but somehow missed it.

I had posted this decision by the

by CheryAnnes (May 28)

Dear All,

This issue is very vital to all of us.

In march I went to the FDA and spoke to the ODAC regarding the drug review for Omacetaxine. I did not speak as a patient on the
Category: Uncategorised

Replies: 2

Last updated: 2 June 2010
Ali Loram on 27 May 2010

Category: Uncategorised

Replies: 4

Last updated: 28 May 2010

swapping from Nilotinib to Dasatinib
by sandy craine (May 28)

Hi Ali,

the standard dose for dasatinib is 100mg daily. It might be that you respond well and in time could even reduce the dose. When dasatinib was first used in the general population the

by Ali Loram (May 28)

Hi Pennie, what a coincidence! I am stating at 100mg once daily. I don't know what dose others are on. Perhaps they could let us know? As yet I don't know if the dose will increase. I also

by Pennie (May 28)

Hi Ali

I am also swapping from Nilotinib to Dasatinib. Will see Dr second week in June to start the change over. I am on holiday till then

What dose are you starting on? Keep

by karen (May 28)

Hi Ali

I swapped from Glivec to Dasatinib due to adverse reactions and it was a really smooth transition. A few minor side effects but nothing like getting used to Glivec and the only problem I
Category: Uncategorised

Replies: 4

Last updated: 28 May 2010
Judsmiles on 25 May 2010

Category: Uncategorised

Replies: 1

Last updated: 28 May 2010

CMML JAK2 support advice and experiences
by sandy craine (May 28)

The JAK2 V617F mutation is a somatic mutation in the JAK2 gene resulting in cell autonomuos overproduction of myeloid cells. The mutation is present in virtually all patients with PV (

by Judsmiles (May 25)

would be so welcome right now please, I can find out so very little, I'd love to hear from anyone who has any knowledge of this DX.

Thanx
Category: Uncategorised

Replies: 1

Last updated: 28 May 2010
tadlaw on 21 May 2010

Category: Uncategorised

Replies: 5

Last updated: 24 May 2010

12 y/o son with CML wants to join 'tackle' football team.
by sandy craine (May 24)

Dear Tracey,

Have faith- in your son- in his TKI therapy and how it controls CML...and in the possibility to have full and active life after diagnosis.

Support him and he will flourish. As you

by angela (May 24)

Hi, I totally agree with the above comment. I'm 48, diagnosed 7 years ago and on 400 glivec. I'm a qualified riding instructor - I still ride and take the knocks which comes

by remw (May 22)

I might not be in my teens still, (45 now) but having been diagnosed 7 years ago, I continued to train hard (3-4 times a week) and play squash regularly, and even took up football again two years

by michael (May 21)

Your son sounds great,I am glad CML has not robbed him oh his youthful spirit,let him give it a go for a trial period.
Category: Uncategorised

Replies: 5

Last updated: 24 May 2010
yogiB on 18 May 2010

Category: Uncategorised

Replies: 4

Last updated: 25 May 2010

Bone Marrow Biopsy - the truth?
by yogiB (May 25)

Sandy

I so resepct your comment and thank you for all you said.

I am not in any way out to 'play God' or hamper progress, just to manage my own condition as best my intuition and

by sandy craine (May 24)

Dear Beth,

most clinicians would agree that you do not need to endure a bmb/a unless there is concern from the results of a pcr or some other indication that there is a sub-optimal response to

by michael (May 20)

Zavie is a old hand when it comes to CML,and always offers great advice,I myself push for extra BMBs to have the best up to date knowledge to combat CML which will kill you if ignored.

by zaviemiller (May 20)

Hi,

I believe that it's a mistake for you to play doctor. If you don't agree with your doctor's treatment, then seek out another CML specialist who will treat you differently and to
Category: Uncategorised

Replies: 4

Last updated: 25 May 2010
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