You are here

Forum

ClaudeM on 5 August 2013

Category: Uncategorised

Replies: 2

Last updated: 19 February 2014

Interferon / Roferon / Peginterferon negative side effects research
by ClaudeM (Feb 19)

UPDATE:
I finished creating my research / book with the help of steadyhealth and it's completely free.
It's called "Dealing with Interferon Side Effects: Patient Stories". And it has...well, exactly

by sandy craine (Aug 5)

Hi Claude,
I am not sure where you were/are treated, but - certainly in Europe and specifically in UK- Interferon in any of its forms is NOT recommended as first line therapy, and certainly not as a

by ClaudeM (Aug 5)

Hi,
I would like to help other people who are in treatment or about to start one with any kind of Interferon. I was on this drug for a whole year and it was , mildly said, the worst time of my life
Category: Uncategorised

Replies: 2

Last updated: 19 February 2014
Parklife on 3 August 2013

Category: Uncategorised

Replies: 17

Last updated: 12 July 2014

Advice after recent diagnoses.
by Parklife (Jul 12)

Hi
I will start by saying that I came across your post by chance as I haven't been on the forum for a while as things have been manic (Not CML related, as you will see later in my post ;-)). I was

by Wellfi (Jul 7)

Hi John, I know this is an old post but have just read through it while looking for some info and I can relate. My husband has just been diagnosed at 29 years old and I am 6 months pregnant with our

by David Fitz (Aug 7)

If you want to read more, I'd recommend this book. It can get a little technical at times, but not overly so and you don't need to understand the occasional sciency bits to get the overall picture.

by Parklife (Aug 7)

Hi David
Thanks for getting back.
It's all hopefully going to become more familiar as time goes by, I need to read more! I think for me is I don't want to be misunderstanding something that makes
Category: Uncategorised

Replies: 17

Last updated: 12 July 2014
Pennie on 1 August 2013

Category: Uncategorised

Replies: 8

Last updated: 20 August 2013

Latest PCR and 12 year CML anniversary
by vickiep (Aug 20)

Well done Pennie...excellent news, you've done so well and weathered so much over the last 12 years..

Congratulations!

Vickie

by EmChops (Aug 8)

Hi Pennie

Such good news with your PCR result and 12 year anniversary, very heartening for all of us too.

This site and your story always help, I don't come on often but days like today

by sandy craine (Aug 5)

Hi Pennie.... many congratulations on your continuing excellent response. Your latest PCR result is excellent- being somewhere between MR4 and MR 4.5 and will no doubt encourage others who are more

by skiinglaketahoe (Aug 4)

Hi Pennie
Great to hear that you are doing nicely. Well done on the anniversary. It is always nice to hear how you are doing.
Regards

Susan
Category: Uncategorised

Replies: 8

Last updated: 20 August 2013
Steven Davies on 30 July 2013

Category: Uncategorised

Replies: 2

Last updated: 2 August 2013

2 weeks short of 9 years
by Richard42 (Aug 2)

Great news Steven

by sandy craine (Jul 31)

Hi Steven,

Just to say well done and congratulations. I know you have had quite a few intolerance issues but at least you are now comfortable with your QoL on nilotinib and.... an excellent

by Steven Davies (Jul 30)

Went for my regular check up today at and just 2 weeks short of 9 years I'm 0.022. I have been at this level for a number of years and only once reached PCRu when I changed to Bosutinib for a short
Category: Uncategorised

Replies: 2

Last updated: 2 August 2013
Dennis on 30 July 2013

Category: Uncategorised

Replies: 8

Last updated: 31 July 2013

Holiday insurance nightmare!
by Dennis (Jul 31)

Seems this is the only way to go for me - at the moment. Hopefully things might change.

by Dennis (Jul 31)

I got in touch with Hiscox, David. Nice company, gave me a quote then got me to ring their medical line. I spoke to a qualified nurse who understood CML, understood that I'm in MMR, Understood that

by sandy craine (Jul 31)

Hi Dennis,
this is and always has been a problem and I do not see the insurance industry changing any time soon- no matter what. I think that - as David says- the 'computer says no' scenario is

by cdw5000 (Jul 30)

Dennis,
I've traveled quite a bit since Dx. I'm also MMR and have been for some time. I received some silly quotes from a 'specialist' insurer (read: we can justify high prices because we're a '
Category: Uncategorised

Replies: 8

Last updated: 31 July 2013
cdw5000 on 27 July 2013

Category: Uncategorised

Replies: 8

Last updated: 2 August 2013

Emerging Strategies for Targeting CML Stem Cells
by Lyndsey (Aug 2)

Thanks sandy

I am on the HCQ 800mg along side the imatinib 400mg. Next bone marrow oct. Prof Holyoake is very good at explaining things and you can see her passion when she speaks. She is

by sandy craine (Aug 2)

hi Lyndsey,

this study is certainly 'one to watch'. I hope you can take time to keep us informed as you go on. Hopefully you will see a further drop in PCR test next time. Just to clarify- you

by Lyndsey (Jul 30)

I have tolerated it very well. Initially after 3 weeks on drug I got constant diarrhoea the drug was stopped until settled. Sample etc taken to rule out infection then drug restarted at same dosage

by sandy craine (Jul 30)

Hi Lyndsey,
Thanks for your update, it is obvious that you are doing very well as your last PCR result shows. Can you let us know how you have got on with the new therapy? ... has the HCQ caused you
Category: Uncategorised

Replies: 8

Last updated: 2 August 2013
sandy craine on 31 July 2013

Category: Uncategorised

Replies: 3

Last updated: 4 August 2013

Bosutinib patients in Scotland?
by skiinglaketahoe (Aug 4)

Pleasure Sandy, sorry to be such a nerd looking out for typos......
Hope you do get some response but as you say it is going to be difficult - but you have to try!
Susan

by sandy craine (Aug 1)

Thank you Susan, I have now corrected it. Not too hopeful of a response as there are so few (I only know of one) patients on bosutinib in Scotland. Nevertheless we need to try.
best wishes,
Sandy

by skiinglaketahoe (Jul 31)

think you have a typo on the email address so you may not get any responses
Susan

by sandy craine (Jul 31)

The upcoming SMC appraisal is crucial if bosutinib is going to be available to CML patients in Scotland and given the recent NICE ACD which does not recommend bosutinib for treatment in England (we
Category: Uncategorised

Replies: 3

Last updated: 4 August 2013
sandy craine on 26 July 2013

Category: Uncategorised

Replies: 1

Last updated: 26 July 2013

New article on Home Page: State of CML Treatments.
by David Fitz (Jul 26)

I read this article this morning, unrelated to seeing this post, and was interested in this piece of it [talking about the genesis of the Ph+ chromosome in an individual]:
"How and why that happens

by sandy craine (Jul 26)

http://www.cmlsupport.org.uk/node/7982
Category: Uncategorised

Replies: 1

Last updated: 26 July 2013
Olivia on 25 July 2013

Category: Uncategorised

Replies: 4

Last updated: 2 August 2013

Does cancer run in families?
by Richard42 (Aug 2)

My mother has had CMML for 8 years, diagnosed 4 years before my CML. I was told this is coincidence, and hers is dysplastic not proliferative like CML. To my knowledge no one else in my family has

by Steven Davies (Jul 28)

Hi
In 2 weeks it will have been 9 years since dx and considering my local hospital said I had 3-5 5 years . What they forgot to say is that I had 3-5 years without medication. Obviously once I got

by Olivia (Jul 28)

Hi Sandy
That's really interesting! Perhaps I should warn my family about the possibility. It makes me wonder whether we have a genetic glitch that makes us a little more susceptible, and then

by sandy craine (Jul 25)

Hi Olivia,
my mum was recently (2 years ago) diagnosed with CLL. It was a bit of a shock for my family as they had only just about got used to me having CML! CLL has a higher incidence rate than CML
Category: Uncategorised

Replies: 4

Last updated: 2 August 2013
Luisa on 24 July 2013

Category: Uncategorised

Replies: 10

Last updated: 8 April 2014

neutropenia on nilotinib
by cdw5000 (Apr 8)

I'm not aware of the 400mg once a day either, but it seems to be doing the trick!
The cynical side of me thinks Novartis probably understands how to get to a single dose and maintain adequate plasma

by sandy craine (Apr 8)

Hi Steven,
I think you are the first person I am aware of who is on 00mg once daily, although I am sure there are others.

My question is, why are you not required to divide the 400mg into

by Steven Davies (Apr 2)

Hi Luisa.
Sorry to but in but just reading your latest post.. I am on 400 mg Nilotinib once a day as I cannot tolerate the full dose..

The full dose is actually 400mg twice daily. (800mg) .

by Luisa (Apr 2)

Hi Dav,

I still use this forum occasionally. I tend to read other people's stories rather than posting myself!. Anyway to answer your question: after a week off nilotinib my blood counts
Category: Uncategorised

Replies: 10

Last updated: 8 April 2014
Sarah Bo on 23 July 2013

Category: Uncategorised

Replies: 2

Last updated: 23 July 2013

PCR Results
by David Fitz (Jul 23)

Congrats Sarah - that sounds awesome! Onwards and downwards!

by sandy craine (Jul 23)

Hi Sarah... very good news, and given you have had this within 6 months it is likely that you will respond well to imatinib. It's also great that you have few side effects - oh and that you feel

by Sarah Bo (Jul 23)

Hello,
Hope everybody is well.
I have just had my 6 month PCR results back from the Hammersmith and I am pleased to say they are now at 0.88%. I am so pleased as I was worried whether Imatinib would
Category: Uncategorised

Replies: 2

Last updated: 23 July 2013
tartancaddy on 22 July 2013

Category: Uncategorised

Replies: 4

Last updated: 24 July 2013

affect of chemo on having children
by tartancaddy (Jul 24)

guys, thanks for all your helpful comments.

by sandy craine (Jul 23)

I would also add to Rod's suggestion that you read the following from the CML Horizons Conf. where Prof. Jane Apperley presented about fertility and pregnancy issues.

The full report is on the

by bc (Jul 23)

Hi Gary,
What sort of chemo are you talking about? Hydroxyurea possibly on first diagnosis? My understanding (I went through a similar situation) is this is low dose chemotherapy and shouldn't

by RodM (Jul 22)

Hi
I suggest you watch the videos on pregnancy in CML, which do also deal with fathering a child.
Available using the links at the top of the forum topic lists.
Rod
Category: Uncategorised

Replies: 4

Last updated: 24 July 2013
mneale on 19 July 2013

Category: Uncategorised

Replies: 3

Last updated: 21 July 2013

What does this mean?
by mneale (Jul 21)

Hi Sandy,

Thank you for your reply and all the information you have supplied, it has got me thinking. I will have a look this evening at the link that you have given me.

I am currently

by sandy craine (Jul 21)

Hi Mark,
So sorry to hear you are suffering from such a complex set of complications as well as transplant relapse. I know very little about the effect that an additional chromosome 3 abnormality

by nigel (Jul 20)

Sounds like you've had tough 2 years, cant help with your question but just wanted to day hi, sure all here are with you, and that sandy / someone can help. Nigel

by mneale (Jul 19)

Hi all,

I haven't posted on here for quite some time, but I could do with some help if possible. I was diagnosed with CML in Feb last year. I had three TKI's Imatinib, Nilotinib and Dasatinib
Category: Uncategorised

Replies: 3

Last updated: 21 July 2013
sandy craine on 18 July 2013

Category: Uncategorised

Replies: 1

Last updated: 19 July 2013

High cost cancer drugs- the argument goes on
by Richard42 (Jul 19)

Thanks for posting this Sandy - an open discussion about healthcare costs, especially cancer therapy, is absolutely necessary. It's certainly not as simple as the tabloids would have one believe

by sandy craine (Jul 18)

This is obviously a complex issue, and the argument about how much profit a company makes is 'too much' opens what must be a valid discussion. In my view, if you take the position that 'blockbuster
Category: Uncategorised

Replies: 1

Last updated: 19 July 2013
Belinda Whitting on 14 July 2013

Category: Uncategorised

Replies: 6

Last updated: 16 July 2013

How often patients see their consultant
by Olivia (Jul 16)

Thanks Sandy. I had assumed my consultant knew what he was doing (!), but it's good to have your confirmation.

Olivia

by Belinda Whitting (Jul 15)

Thankyou for your advice everyone I will post his pcr results when I have got them from the clinic. Once again I appreciate all your advice.x

by sandy craine (Jul 15)

Dear Olivia,

well done on the achievement of such low pcr's - your last is equivalent to MR4 on the international scale.

I have just taken a look at the SPIRIT study website and found

by Olivia (Jul 15)

I was wondering about this very subject recently. I too am on 400 mg Glivec, and have been for nearly 4 years now. My last PCR was 0.017, and other results all fine. The consultant told me he
Category: Uncategorised

Replies: 6

Last updated: 16 July 2013
sandy craine on 17 July 2013

Category: Uncategorised

Replies: 1

Last updated: 19 July 2013

Burzynski: Cancer is a Serious Business.
by Richard42 (Jul 19)

Dr Burzynski was the subject of a critical Panorama documentary a couple of months ago - might be worth tracking that down for another perspective, too, if you watch this one.

by sandy craine (Jul 17)

I have just watched the first hour of this video..... it is fairly stunning! and also very moving. Take some time out to watch this... it is only available online until July 20th.

Sandy
'
Category: Uncategorised

Replies: 1

Last updated: 19 July 2013
ruddoug09 on 12 July 2013

Category: Uncategorised

Replies: 1

Last updated: 11 September 2013

National 3 Peak Challenge
by ruddoug09 (Sep 11)

Many thanks to everyone for the support, we raised £2,656, well above my hopes!
An unforgettable experience...never to be repeated...probably.

by ruddoug09 (Jul 12)

Hi Everyone,
Once again I'm taking part in a challenge to raise funds for Leukaemia & Lymphoma Research, a chairty close to all of our hearts.
There are 8 of us taking part in the challenge
Category: Uncategorised

Replies: 1

Last updated: 11 September 2013
Rogue Wave Fan on 10 July 2013

Category: Uncategorised

Replies: 5

Last updated: 17 July 2013

new and discouraged
by David Fitz (Jul 17)

Hi Christine,
I'm so pleased to hear the bone pain has gone - that's awesome! For me it just wouldn't go, so I switched to dasatinib and that made it go away. The main thing is that it goes, and the

by Christine Wilson (Jul 15)

Hello, I am also newly diagnosed within the last month and just wanted to say what a fantastic site this is and I have received so much reassurance and support from other CML ers.

I would

by Steven Davies (Jul 14)

About 2 years ago I developed what's called geographic tongue which is extremely painful and also very sensitive.
I was put on a course of steroid mouth was and tablets and that cleared it up.
I

by sandy craine (Jul 12)

Hi,

So sorry to read that you are suffering side effects. You do not say when you were diagnosed but I assume it was quite recently- within 3 months?. Side effects from imatinib/Glivec (
Category: Uncategorised

Replies: 5

Last updated: 17 July 2013
chrissie on 3 July 2013

Category: Uncategorised

Replies: 2

Last updated: 5 July 2013

Hayfever
by chrissie (Jul 5)

Hi Sandy

Yes, so far so good.it was the most unpleasant experience, and considering last summer's wet and cold no one thought of hay fever. All under control so far this year thanks to tablets

by sandy craine (Jul 4)

Hi Chrissie,

It could be that as periorbital oedema is a common side effect of imatinib that you are more prone to reactions caused by allergens in the air- such as pollen? Just a guess really

by chrissie (Jul 3)

Hi All

Some of you may remember last summer I had a real problem with my sinuses/nose etc and managed to lose 20 lbs in weight as I was unable to chew and breathe, so chose to breathe. I felt
Category: Uncategorised

Replies: 2

Last updated: 5 July 2013
nigel on 2 July 2013

Category: Uncategorised

Replies: 2

Last updated: 3 July 2013

Update on Results
by sandy craine (Jul 3)

Really good news Nigel. You are absolutely right about the 'guidelines'... see discussion on this as Karen made the same point - see thread further down. My friend took 11 years to get to MR3.
At 0.

by Richard42 (Jul 2)

Excellent news Nigel. Best - Richard

by nigel (Jul 2)

Hi all, Pleased to say after a little blip few months ago and a rise in PCR from 0.4 to 0.6 then back to 0.4 again, we discussed changing from Imatinib with my consultant to Nilotinib, I don't
Category: Uncategorised

Replies: 2

Last updated: 3 July 2013