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Calalily on 24 November 2012

Category: Uncategorised

Replies: 5

Last updated: 12 December 2012

Difficult decision!
by sandy craine (Dec 12)

I have not taken nilotinib so cannot answer your questions re side effects from personal experience. However, there are many who access this forum who would be able to advise/reassure you.
I would

by Calalily (Dec 11)

Thank you so much, Lynn Sandy and Jacqui! It's been a whirlwind few weeks trying to get my head around everything but forums like this are really helping me as you understand what I'm going through

by jacqui from Colchester (Nov 25)

I have just change to Nilotinib (Tasigna) I also feel great on this drug compared to dasatinib and imatinb
I initially started taking it at 9am and 9pm but after a few months I decided that putting

by sandy craine (Nov 25)

Calalily,

Welcome to this forum. In my opinion- whick echo's Lynn's - you have made the right choice given that you were only offered imatinib as the other choice.
There is no doubt that
Category: Uncategorised

Replies: 5

Last updated: 12 December 2012
Audrey on 24 November 2012

Category: Uncategorised

Replies: 5

Last updated: 3 December 2012

worrying failure of imatinib
by Audrey (Dec 3)

Thank you so much to everyone for their comments. Unfortunately, after 8 days on nilotinib, my husband had to contact the hospital about his racing heart and a very bad rash. His body and arms were

by ni2i (Dec 2)

Hi Audrey
Please try not to worry, easier said than done i know. When I was dx in feb 2011 I was given Imatinib I was on them for 12 months and felt rubbish and I could not get my Bcr down any lower

by jacqui from Colchester (Nov 26)

Hi on reading your post a few things reminded me of how I felt. I am 46 and I chose to go on the Spirit II trial (praying I would get dasatinib)and luckily I was given dasatinib. I was so hoping

by teddyb (Nov 26)

Hello, sorry to hear your husband didnt get the desired results, but at least the drugs seemed to have some effect on his CML, so the nilotinib should have a much more powerfull effect since its a "
Category: Uncategorised

Replies: 5

Last updated: 3 December 2012
sandy craine on 20 November 2012

Category: Uncategorised

Replies: 1

Last updated: 21 November 2012

OHSU's cancer programme-Article in Portland Monthly.
by chrissie (Nov 21)

Wow - that is amazing,not just the generosity of the Knights, but the equipment, the building, the whole project and the enthusism and determination for the research displayed by the doctors. So

by sandy craine (Nov 20)

thanks to Pat Elliot for sharing this link. There is a great photo of Brian Druker ;o)

Sandy
How OHSU will use big money, brand new labs, and all-star researchers to launch bold new cancer
Category: Uncategorised

Replies: 1

Last updated: 21 November 2012
David Fitz on 30 November 2012

Category: Uncategorised

Replies: 2

Last updated: 4 December 2012

Travel insurance - thumbs up to Lloyds TSB
by sandy craine (Dec 4)

Hi Des...I absolutely agree with everything you have said. I am also very pleased that you have finally updated us on your trip into the unknown- i.e Stopping therapy.

4 years TFS (treatment

by Des (Dec 4)

there are many insurance companies, (hsbc amongst them) who will cover every scenario except cml. Initially, when diagnosed almost 10 years ago, I was really concerned about the necessity of

by David Fitz (Nov 30)

3 weeks on from DX, I'm starting to get myself organised and tell insurance companies things they need to know, etc.
Having read lots of people's nightmares with travel insurance, I was expecting
Category: Uncategorised

Replies: 2

Last updated: 4 December 2012
lucky4lock on 30 November 2012

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Replies: 2

Last updated: 13 December 2012

MMR in 3 Months!!!!!!!!!!!
by lucky4lock (Dec 13)

Thanks Sandy.It is Clear now.

by sandy craine (Dec 3)

Hi Lucky,
Well you should be very pleased indeed. Your brother has responded extremely well to dasatinib (Sprycel) and from the figures you give above calculated on the IS, his disease has reduced

by lucky4lock (Nov 30)

Hi all,
My brother of age 29 is dx with CML with WBC 216, 4 months back.Firstly on Hydrox for 2 Weeks, then onSprycel 100 mg.
We went for 3 months follow up blood test.The below are the BCR/ABL
Category: Uncategorised

Replies: 2

Last updated: 13 December 2012
clair merritt on 6 December 2012

Category: Uncategorised

Replies: 1

Last updated: 6 December 2012

Advice needed: daughter stopped taking imatinib
by sandy craine (Dec 6)

Dear Clair, I am so sorry you have to watch your daughter suffer so. She is not alone in not wanting to take her medication- and being 15 I am sure she must to so fed up with the whole thing and

by clair merritt (Dec 6)

Hi everyone, I haven't posted on here in a while but really need some advice. My daughter is 15 and was diagnosed 18 months ago she also has cystic fibrosis. She has been going through a tough time
Category: Uncategorised

Replies: 1

Last updated: 6 December 2012
tartancaddy on 5 December 2012

Category: Uncategorised

Replies: 2

Last updated: 6 December 2012

abdominal pain
by tartancaddy (Dec 6)

Hi Sandy
Thanks for your reply. Will speak to my Consultant.
Regards
Gary

by sandy craine (Dec 6)

Gary,

it sounds like you may well have a urinary infection- given you also are having pain in the Kidney area. If your wee is dark yellow in colour (rather than a pale straw colour) then you

by tartancaddy (Dec 5)

Hi Guys
I've been on 400mg of Imatinib for 2 1/2 years but have recently been experiencing abdominal pain when i wake up. This seems to pass when i get up and walk around but is really painful and
Category: Uncategorised

Replies: 2

Last updated: 6 December 2012
Barbs on 3 December 2012

Category: Uncategorised

Replies: 3

Last updated: 5 December 2012

French STIM 2 trial
by sandy craine (Dec 5)

I am copying a portion of Des' post below on the Travel Ins thread as it also contains an update on her experience with stopping therapy.....
From Des:

".....For those newbies, just diagnosed

by cousineg (Dec 4)

Thank you Barbara for your posting. I thought of you when I read these new articles about STIM (STop IMatinib)

Model-based decision rules reduce the risk of molecular relapse

by sandy craine (Dec 3)

Dear Barbara, thank you for posting this very positive news on this forum. I am sure it will give many of us hope for a future of TFS (treatment free survival) in spite of low levels of molecular

by Barbs (Dec 3)

Some of you may remember that I stopped taking my Glivec as part of the French STIM 2 trial in May 2011.

I am pleased I get to stay off Glivec for at least 2 more months; latest PCR 0.006 (
Category: Uncategorised

Replies: 3

Last updated: 5 December 2012
cousineg on 7 December 2012

Category: Uncategorised

Replies: 1

Last updated: 7 December 2012

Preliminary results of a phase II clinical trial to treat leukemia with a WT1 DNA vaccine
by cdw5000 (Dec 7)

While I am always encouraged by news of 2G/3G TKIs, it's this technology and Potential treatment that really excites me. If this works at full scale it could be a game changer for so many CML

by cousineg (Dec 7)

See this new article Inovio Pharmaceuticals Announces Positive Interim Results in Phase II Leukemia Trial

See also CML Vaccine
Category: Uncategorised

Replies: 1

Last updated: 7 December 2012
sandy craine on 8 December 2012

Category: Uncategorised

Replies: 1

Last updated: 9 December 2012

Updates from ASH
by sandy craine (Dec 9)

Live from the ASH Press conference room!

Dr. Cortes just presented saying that difficult to treat patients such as patients who have not achieved responses with two or three prior therapies

by sandy craine (Dec 8)

Quick update from Cheryl-Anne Simoneau of The CML Society of Canada who is attending ASH in Atlanta GA, alongside other CML patient Advocates.
"From ASH: Hitting the ground running! But three key
Category: Uncategorised

Replies: 1

Last updated: 9 December 2012
Anonymous (not verified) on 19 November 2012

Category: Uncategorised

Replies: 3

Last updated: 20 November 2012

re pleural effusion from Sandy & jacqui
by Anonymous (Nov 20)

Hi Jacqui:

I am having an echocardiogram tomorrow and seeing my GP in a week;

also having another blood test. If my breathing gets worse, I will contact

my consultant. My GP is

by jacqui from Colchester (Nov 20)

Just to give you more information
I Intially went to the doctors as I was finding it hard to breathe. They sent me to the hospital for an xray. I had an appointment with my consultant by

by sandy craine (Nov 20)

Dear Linda,
From what I can have gathered over the weekend and reviewing the side effect profile for dasatinib, should have interrupted your therapy until the PE was fully resolved.

Maybe you

by Anonymous (Nov 19)

Thank you both for your replys.

I did try to reply to your individual messages but don't think it worked.

I am still on Dastinib and my GP has put me back on water tablets as

I
Category: Uncategorised

Replies: 3

Last updated: 20 November 2012
ruddoug09 on 18 November 2012

Category: Uncategorised

Replies: 3

Last updated: 20 November 2012

Glasgow patient day
by sandy craine (Nov 20)

Hi Neil and Olivia,
Good to meet up with you too- even though there was not much time to talk.
All in all I thought it was a good meeting although I was not able to get to the breakout sessions,

by Lyndsey (Nov 19)

Just to add also was a great day and great to see everyone look so well! Olivia I agree with the comment with name badges as would have been nice to meet you both. I did speak to someone regarding

by Olivia (Nov 19)

I'd like to add my thanks - I came away tired, but optimistic and aware of how lucky we are to have so many wonderful people on our side in the fight against this disease.

One minor

by ruddoug09 (Nov 18)

Just a quick note of thanks to everyone involved in the patient day yesterday, hugely informative and well organised. Many thanks to the speakers as well for giving up their valuable time, the
Category: Uncategorised

Replies: 3

Last updated: 20 November 2012
Lydia on 18 November 2012

Category: Uncategorised

Replies: 3

Last updated: 21 November 2012

Looking for a Centre of Excellence
by sandy craine (Nov 21)

Dear Lydia,
I will contact you with the contact details of Liverpool and Leeds. I think the lead haematologists at any of the centres mentioned would be sympathetic- Liverpool is a very good centre

by Lydia (Nov 20)

Thank you for replying so promptly, Sandy. We could go to Manchester, Liverpool or Leeds. There's not much difference in the distance.

by sandy craine (Nov 20)

Hi... side effects are a serious issue if they affect your quality of life and even if you are a good responder you should not just 'put up with' side effects and soldier on.
During the Glasgow

by Lydia (Nov 18)

Could I ask for some advice please? My husband is thinking of asking another consultant for advice on living with the side effects of Glivec. Having been PCRU for 3 years it is obviously working and
Category: Uncategorised

Replies: 3

Last updated: 21 November 2012
Anonymous (not verified) on 16 November 2012

Category: Uncategorised

Replies: 4

Last updated: 21 November 2012

Plural infusions breast
by John555 (Nov 21)

Webnomics Technologies is an asp.net development and outsourcing company providing affordable design and development services. Now a new project of Online store launched, where you can buy online

by jacqui from Colchester (Nov 19)

Hi Linda
I developed a pleural effusion after being on dasatinib for 2.5 years. I had nine months of worry and trying different tablets, I even came off all drugs for over 4 months whilst the

by Anonymous (Nov 17)

Hi Sandy, Thanks for your reply. I am based at the Eastbourne Hospital and at this moment I am still on Dasatinib 100mg. I have had 3 weeks of water tablets and 10 days of steroids.I saw my own

by sandy craine (Nov 16)

Dear Linda,
sorry to hear you have had such a problem with side effects from dasatinib. It is true that a minority of patients develop pleural effusion. I think it sounds like you have had quite an
Category: Uncategorised

Replies: 4

Last updated: 21 November 2012
Pennie on 14 November 2012

Category: Uncategorised

Replies: 8

Last updated: 22 November 2012

Severe rash on Nilotinib anyone?
by sandy craine (Nov 22)

Dear karena,
thanks for updating here on your experience with TKIs and now ponatinib. This is an interesting drug not least because it deals with T315i mutation. exciting times once again, but it is

by karen (Nov 22)

Hi Pennie

It may be worth seeing if you could try Ponatinib. I have had problems with Glivec, Nilotinib and Dasatinib and they allowed me to try Ponatinib (from Hammersmith but Kings are now

by Pennie (Nov 20)

Thank you for your reply Ali. It's a very scary place to be and it helps to know I'm not the only one. I am being front loaded with steroids right now in the hope that I can restart Nilotinib

by Steven Davies (Nov 20)

Hi Pennie
Sorry to hear you have problems again
I'm on Nilotinib and have developed acne roseace on my head .. Taking slow release antibiotics and have a lotion to put on in which seems to be
Category: Uncategorised

Replies: 8

Last updated: 22 November 2012
sharito on 13 November 2012

Category: Uncategorised

Replies: 2

Last updated: 14 November 2012

Advice please
by sandy craine (Nov 14)

Hi Sharon,
This is obviously quite a complex situation and I am struggling with how to advise you about what your consultant might be thinking, but I will try.
Can you say what the problems you had

by Gerry (Nov 14)

Hi Sharon,

I would be looking to change doctors and get a second opinion. There are people who take drug holidays due to side effects and get their response back eventually. Loss of response

by sharito (Nov 13)

Hi,
I've been on glivec for just under four years. I started having problems with it July, I stopped taking it for about 6 weeks then I saw my consultant, and obviously I have since gone back on it
Category: Uncategorised

Replies: 2

Last updated: 14 November 2012
David Fitz on 11 November 2012

Category: Uncategorised

Replies: 12

Last updated: 15 November 2012

A new member, unfortunately :-(
by sandy craine (Nov 15)

Hi Adam... good to hear you are doing well and with such good support from your family, friends and others. As you say- this is so important. Congratulations on the upcoming birth of your second

by ADJL (Nov 15)

Hi David,
So pleased you found this supportive community- diagnosis is a massive shock, but Sandy and others here work wonders in explaining and presenting facts, and the emotional support of

by David Fitz (Nov 15)

Thanks Sandy, that's going to be really helpful. I am allowed fly home this weekend (after a bit of appointment shuffling!) to see my family, so I am not really sure how we're all going to react as

by sandy craine (Nov 13)

David,
I completely understand you saying that is the biggest stress. My family live in the north (Liverpool) and I found it very difficult/impossible to tell them about my diagnosis over the phone
Category: Uncategorised

Replies: 12

Last updated: 15 November 2012
gizmos mum on 9 November 2012

Category: Uncategorised

Replies: 3

Last updated: 11 November 2012

Iron supplements and vitamins
by sandy craine (Nov 11)

In my experience, iron supplements can cause constipation (very undesirable!)so you are doing the right thing to try to overcome low HGB count by including dark green veg etc. in your diet. Another

by gizmos mum (Nov 9)

Thanks Sandy. I have been eating lots of greens and spinach to try get my iron up as i am anaemic but i think it is caused by the treatment. i will ask doc again next time but i am pretty sure he

by sandy craine (Nov 9)

I think there are lots of doctors that do not recommend taking supplements of any kind- as far as I know we can get a lot of iron from everyday food such as tomatoes etc. However, opinions differ

by gizmos mum (Nov 9)

Hi, thank you Sandy for the link about supplements to help those who suffer with thier eyes on TKI's.Just out of curiosity, I was advised by my consultant last time to not take any vitamin
Category: Uncategorised

Replies: 3

Last updated: 11 November 2012
Ali Loram on 7 November 2012

Category: Uncategorised

Replies: 2

Last updated: 9 November 2012

BMT
by sandy craine (Nov 9)

Dear Ali,

I follow your caringbridge posts carefully and I am pleased to hear you have reached the bit where you 'escape'and after only 21 days after your SCT! I am sure being semi-independent

by Alastair C (Nov 8)

Ali
To borrow a quote from Craig on "Strictly"
FAB-U-LOUS
great to hear your progress, and thanks for sharing it with everyone.
Alastair

by Ali Loram (Nov 7)

Hi all, this is just a quick update to let you know where I am following my reduced intensity BMT.
I am + 21 days today and feeling very well! I am going to the apartment in Bristol and will
Category: Uncategorised

Replies: 2

Last updated: 9 November 2012
teddyb on 6 November 2012

Category: Uncategorised

Replies: 5

Last updated: 7 November 2012

6 month PCR results
by teddyb (Nov 7)

Thank you Sandy :)

by sandy craine (Nov 7)

Teddy, what a great response- so glad we can share and 'feel' your happiness! Enjoy those tears of joy- they are the best kind!
Sandy

by teddyb (Nov 6)

Thank you Lyndsey and Don.
When i first read the pcr results, there were a few tears of joy, so yes, im over the moon :)
Having a few glasses of red wine tonight :)

by Don Adkins (Nov 6)

Hi Teddy,
Celebrate! Great count...
Cheers,

Don
Category: Uncategorised

Replies: 5

Last updated: 7 November 2012