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Ndb on 25 September 2015

Category: Reproductive health

Replies: 0

Last updated: 25 September 2015

Autism
by Ndb (Sep 25)

My husband was on gleevec for several years we had a son in 2011 perfectly healthy later diagnosed with autism. Anyone else have this experience?
Category: Reproductive health

Replies: 0

Last updated: 25 September 2015
David Fitz on 15 September 2015

Category: Blood tests

Replies: 9

Last updated: 24 September 2015

Good news, but I'm a bit confused!
by Lucas (Sep 24)

great news, david!! congratulations!!

by David Fitz (Sep 20)

Haha - I'm the same. If I can't control it, I don't worry about it too much.
But at the same time, to temper my own expectations I don't get carried away with thing (that's what I mean about

by darley (Sep 17)

But if you're a natural pessimist it could stop that ;)
I'm in the camp of never wanting to worry about what I can't control and effect. Tending to optimism and always eager for good news though

by David Fitz (Sep 16)

I have my oncologist's email address and might drop her a note. But to be honest it wouldn't change what she'd say to me in a couple of months at the next clinic. I'm pretty patient :)
Category: Blood tests

Replies: 9

Last updated: 24 September 2015
RodM on 24 September 2015

Category: Treating CML

Replies: 2

Last updated: 24 September 2015

Guardian Article - Cancer Drug costs in the UK
by Lucas (Sep 24)

here in brazil dasatinib is cheaper than glivec for market reasons. we have only imatinib (generic one) for first line therapy here and dasatinib is the most used second line therapy here.

by David Fitz (Sep 24)

My understanding was that Dasatinib (100mg) was available to the NHS at a cost of £2504.96p per 30 day cycle (from section 3.4 here), which is over £30,000 a year. That's still less

by RodM (Sep 24)

http://www.theguardian.com/business/2015/sep/23/uk-cancer-patients-being...

I didn't realise that Dasatinib in Brazil is sold at less than half the cost of the UK, or that it's over
Category: Treating CML

Replies: 2

Last updated: 24 September 2015
David Fitz on 22 September 2015

Category: Getting help

Replies: 5

Last updated: 23 September 2015

New web site - Sept 2015
by karen (Sep 23)

The new site is much more user friendly and feels like it has even more information on it - congratulations Sandy and team

Karen

by nigel (Sep 22)

Well done sandy and all, looks really good.

by stella (Sep 22)

The new site is great, much, much easier to use. Thanks for all the work you've put into it, we all appreciate it.

by darley (Sep 22)

It looks a lot better.
Category: Getting help

Replies: 5

Last updated: 23 September 2015
Parklife on 18 September 2015

Category: Side effects

Replies: 2

Last updated: 19 September 2015

Bosutinib and stomach/abdomen pain.
by Parklife (Sep 19)

Hi Sandy.
Thanks for getting back.
I have had bloods ran this week and apparently my liver results are normal but the Consultant said my Haemaglobin was low. He requested an Ultrasound and the

by sandy craine (Sep 19)

John... from your description of where the pain radiates from it sounds like it may be your liver. Maybe a good idea to ask for your liver enzyme levels. If they are raised it may explain the pain-

by Parklife (Sep 18)

Hi everyone. I just wondered if anyone out there currently taking Bosutinib has had any issues with abdomen/flank/lower back pain. I have been on here before for muscularskeletal pain which I have
Category: Side effects

Replies: 2

Last updated: 19 September 2015
David Ryner on 13 September 2015

Category: Uncategorised

Replies: 2

Last updated: 15 September 2015

The availability of bosutinib and ponatinib for CML patients in England: an update
by sandy craine (Sep 15)

Hi Moirah,

Do not worry at this point. It is highly likely that you will respond very well to imatinib.
If you were not to respond to imatinib, then you will have access to nilotinib to which

by Moirah (Sep 13)

Sorry but being newly dx end July and now being on imatinib, does this decision by the CDF now mean that if my imatinib doesn't work then my 1 and only other option left is nilotinib and if that

by David Ryner (Sep 13)

Update on bosutinib: I went to a meeting on Monday (7th) at the Department of Health where the Chair of the CDF Panel, Peter Clark, briefed patient groups on the current delist and the Panel’s
Category: Uncategorised

Replies: 2

Last updated: 15 September 2015
Bmckenna on 10 September 2015

Category: Drug-food interactions

Replies: 5

Last updated: 13 September 2015

Juicing fresh produce... Is it ok with SPRYCEL?
by Steven Davies (Sep 13)

Other foods to avoid are Pomegranate, Star fruit, blood or servile oranges and Aloe Vera juice.

by Bmckenna (Sep 11)

Hi S and D,
Thanks to you both for your input. I did read about grapefruit and the negative affects while taking TKIs. I've read up much on juicing. I think I'll try it in addition to healthier

by darley (Sep 10)

I farm and aside from your mistaken beliefs re farming it's really just playing to marketing hype which the objective of generating sales if you're taking vitamin and mineral supplements without

by sandy craine (Sep 10)

As Darley has already warned... grapefruit is definitely contraindicated with TKIs. this is because one of its constituents increased the plasma concentration of these kinds of drugs and therefore
Category: Drug-food interactions

Replies: 5

Last updated: 13 September 2015
Moirah on 7 September 2015

Category: Side effects

Replies: 3

Last updated: 11 September 2015

spleen pain?
by cdw5000 (Sep 11)

Hi Moirah,
Mt spleen took ages to feel normal again. My white blood cell count was 108,000 at diagnosis, which resulted in my spleen being twice its normal size. I recall i had twinges for up to one

by Moirah (Sep 8)

Thank you Sandy yes I'm very lucky to be at the royal in Liverpool prof Clark and the CML nurses are fab. I just feel like I would b bugging them prof Clark did say when I mentioned the pain that it

by sandy craine (Sep 8)

I am sure your notes will indicate how large your spleen was at diagnosis, but without knowing that it is difficult to say how long it will take to get back to normal. You are still at an early

by Moirah (Sep 7)

Hi Please can I ask how long it takes for spleen to go back to normal Or at least stop hurting, I was dx 20/7 been on imatinib since this date an I am getting twinges of pain around spleen area
Category: Side effects

Replies: 3

Last updated: 11 September 2015
waxi on 3 September 2015

Category: Drug-food interactions

Replies: 1

Last updated: 8 September 2015

Foods to avoid on Imatanib
by darley (Sep 8)

http://www.cmlsupport.org.uk/node/8752

by waxi (Sep 3)

Hi All New to all this so hope i get it right. I was diagnosed CML in Sep 03 2008 and so far been ok ish but have just looked at other posts that suggest we cannot eat food such as marmalade is this
Category: Drug-food interactions

Replies: 1

Last updated: 8 September 2015
RodM on 3 September 2015

Category: Organising your life

Replies: 2

Last updated: 7 September 2015

Scuba insurance
by Stuart Johnston (Sep 7)

I was a diving instructor before Cml

A factor you need to consider would be down to the interaction between medication, absorbsion rates and the risk of bends or nitrogen narcosis.

Due

by David Fitz (Sep 5)

Hi Rod.
Divemaster here ...
The way I look at it is can a diving accident be attributed to CML? So long as your bloods are in good shape, and you are not anaemia, or very low in Hb then I don't

by RodM (Sep 3)

Hi Has anyone managed to get specialist Scuba Diving cover which includes CML? I have travel insurance which covers me with an exclusion on CML direct or indirect events, and does cover diving, but
Category: Organising your life

Replies: 2

Last updated: 7 September 2015
David on 3 September 2015

Category: Treating CML

Replies: 1

Last updated: 3 September 2015

New Treatments
by sandy craine (Sep 3)

Hi David,
Thanks for posting the link to this article. Having read the detail in this one- and another one on the BBC website here: http://www.bbc.co.uk/news/health-34127096 - I think it is highly

by David (Sep 3)

The Times today (3 September, page 21) comments on research in the USA published in the journal, Nature, with an accompanying Editorial by Tessa Holyoake and David Vetrie of Glasgow University. The
Category: Treating CML

Replies: 1

Last updated: 3 September 2015
teddyb on 30 August 2015

Category: About CML

Replies: 2

Last updated: 6 September 2015

Researchers Discover How Myelogenous Leukaemia Stem Cells Obtain Their Nutrients
by teddyb (Sep 6)

Yes i agree, luckily they are making progress on CML as well.
With the sales of TKI`s generating so much revenue, i guess the incentive for developing new drugs will always be there. The article

by Olivia (Sep 1)

I am very grateful that scientists are still interested in finding out more about cml. Since we now have so many drugs to control it, it would be understandable if scientists diverted their

by teddyb (Aug 30)

https://scicasts.com/cancer-research/9949-researchers-discover-how-myelo... Thought this was worth a post :)
Category: About CML

Replies: 2

Last updated: 6 September 2015
FullofHope on 28 August 2015

Category: Treating CML

Replies: 2

Last updated: 30 August 2015

Please help me
by darley (Aug 30)

Well said Sandy.
I can thoroughly endorse what you said and just from having had the personal experience of being at acute phase when I was first diagnosed and undergone years of treatment without

by sandy craine (Aug 29)

Hi,
Your experience of TKI therapy is unfortunate to say the least. I have not heard of many people with such a strong negative reaction that it would make them stop therapy and risk progression of

by FullofHope (Aug 28)

I have been fighting CML since 2013. The treatment was killing me. Kidneys, heart issues, etc. What number is at "acute" and what number is " Blast." I am not willing to stay on
Category: Treating CML

Replies: 2

Last updated: 30 August 2015
Gst on 24 August 2015

Category: Side effects

Replies: 6

Last updated: 3 September 2015

My SCT
by Parklife (Sep 3)

Hi
Just wanted to drop by and say best wishes. I think I speak for everyone on CML Support in wishing you the best in the next few weeks and your speedy recovery moving forward.
Please keep us all

by Gst (Aug 28)

Thanks for all your replies and kind words. I'm coming up to a week now post transplant. My neutrophils have increased slightly but should go up over the next couple of weeks. I will keep you

by skiinglaketahoe (Aug 28)

Hi, just wanted to wish you all the best. I am coming up to 8 years post SCT. In reality, I had a very easy ride with it all. I was only in hospital for about 17/18 nights and really wasn't at all

by darley (Aug 25)

It's just gone past 19 years since I had my MUD BMT.
Take each day as it comes. Try not to worry about what you can't control and effect. Don't bother dwelling on other people's experience.
Category: Side effects

Replies: 6

Last updated: 3 September 2015
Moirah on 19 August 2015

Category: Getting help

Replies: 11

Last updated: 21 August 2015

Feeling very scared :(
by Moirah (Aug 21)

Thank you David I have just transferred to the royal Liverpool my Dr is prof Clarke, met him for the 1st time today he has put my mind at ease x

by Moirah (Aug 21)

Thank you Sandy

by sandy craine (Aug 21)

Hi Moirah,

as everyone has already said, diagnosis is a very scary time and we have probably all experienced some of what you are experiencing now. I found the first weeks and months very

by David Fitz (Aug 21)

When you get which tests done depends on where you live, and what doctor you see. There are a few schools of thought. But you will certainly have had blood tests done already which will show at the
Category: Getting help

Replies: 11

Last updated: 21 August 2015
Steven Davies on 18 August 2015

Category: Treating CML

Replies: 4

Last updated: 25 August 2015

11th cancerversarry
by darley (Aug 25)

I've just past my 21st Anniversary this year.
Thanks to Leukaemia Research, medical science, support of family and friends and a huge measure of good luck :)

by sandy craine (Aug 23)

Hi Steven,

just to join with others and say well done. Thanks for posting this anniversary here, it will give a lot of those who are new to CML great confidence for their future.
Best wishes

by Moirah (Aug 19)

Fantastic xxx

by chrissie (Aug 19)

Great result. Shows us all that if we keep taking the tablets, we may all get there one day.
Best

Chrissie
Category: Treating CML

Replies: 4

Last updated: 25 August 2015
Lucas on 17 August 2015

Category: Treating CML

Replies: 9

Last updated: 26 August 2015

just want to share good news
by wshi2001 (Aug 26)

Lucas,I am so happy for you as you finally found the best medication for your problem. This is already MMR4.5. Inspiring news for everyone.

William

by Lucas (Aug 21)

thanks, david! yes! i'm in MMR4!! still can't believe in it!! hope you're doing great!

by Lucas (Aug 21)

thank you so much, sandy. i had 2 pcrs in a 15 day gap (2 different labs) just to see how good i was and to find out what was the sensibility of my local lab). in my local lab i was pcru and in the

by sandy craine (Aug 21)

Dear Lucas,
so good to hear you're doing so well on nilotinib/Tasigna..... great per result and the bonus is that your Q of L is good. After a shaky start with imatinib you must be so relieved to
Category: Treating CML

Replies: 9

Last updated: 26 August 2015
Moirah on 16 August 2015

Category: Side effects

Replies: 3

Last updated: 22 August 2015

Left side tummy, back pain spleen/kidney?
by David Fitz (Aug 22)

Just to reassure you, in the early days of treatment your body is probably breaking down a lot of the disease with the help of your medication. That means there's a lot of 'waste' to get rid of,

by Moirah (Aug 18)

Thank you Lucas x

by Lucas (Aug 17)

probably your spleen getting to the normal size. try not to worry much, it happens a lot. :)

by Moirah (Aug 16)

Hi Please can I ask I've been on imatinib now coming up to 1 month and yesterday I've started to feel some pain in my left side front & back but more back, I'm thinking spleen or
Category: Side effects

Replies: 3

Last updated: 22 August 2015
Moirah on 13 August 2015

Category: Getting help

Replies: 6

Last updated: 15 August 2015

Newly DX Liverpool
by nigel (Aug 15)

Hi just wanted to add a hello, as others have said the out look is excellent for us. I am diagnosed 4 years next month and they fly by. Work full time, play sport and live normal life. Takes a

by darley (Aug 14)

You will still be going through an emotional roller coaster. But indulge yourself. Get it over and done with and then take deep breaths and consider that as you were diagnosed merely through a

by Moirah (Aug 14)

Thank you Chris x

by cdw5000 (Aug 13)

Hi,
It's early days so far and every slight change or unusual occurrence will set your mind into a state of mild panic. Over time this will settle down - as you have more blood tests you should
Category: Getting help

Replies: 6

Last updated: 15 August 2015
chrissie on 7 August 2015

Category: Getting help

Replies: 3

Last updated: 10 August 2015

DESTINY - happy me
by sandy craine (Aug 10)

Hi Chrissie... that is good news and underlines that it is for a good reason that they (labs) always retest with a different blood sample. Grapefruit aside, you must be feeling pretty wonderful!

by chrissie (Aug 9)

... and I love grapefruit!

by darley (Aug 9)

You're obviously just "an odd one" ;)
I wonder if something is affecting your dose? You're not eating 5 grapefruits and a load of marmalade every day are you :)

by chrissie (Aug 7)

Hi All Just had a call from my local Exeter hospital who had been called by HH regarding my re-test after I appeared to have had a relapse. Apparently I'm back down to 0.055 PCR (IS) to my great
Category: Getting help

Replies: 3

Last updated: 10 August 2015