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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
wshi2001 on 1 August 2015

Category: Treating CML

Replies: 5

Last updated: 4 August 2015

Would Imatinib work again for me?
by David Fitz (Aug 4)

Hi William,
I am not 100% sure on the time it takes for dasatinib to completely wash out of your system, but when I dropped imatinib my consultant and I calculated the half lives of the drug, and

by wshi2001 (Aug 4)

Thanks Sandy, your support means a lot to me. My heart pounding problem has improved a lot, I would say 70% of symptom went within 2 days, and I can finally sleep well at night. I will make an

by sandy craine (Aug 2)

Hi William,
sorry to read of your experience.... especially as you were responding well to imatinib... as David has said in his post - ELNet recommendations are for 12 months not 6, and even then a

by wshi2001 (Aug 2)

Thanks David, I guess symptons and side effects varies from one to the other. Heart pumping is the main reason for me to switch back to Imatinib. And with Imatinib, I don't really have too much of
Category: Treating CML

Replies: 5

Last updated: 4 August 2015
Kerrie on 31 July 2015

Category: Blood tests

Replies: 2

Last updated: 1 August 2015

New to Forum
by David Fitz (Aug 1)

Hi Kerrie,
Those are good numbers for him, at this stage. It took me over 2 years to get to anything below 0.05%, and I'm doing very well now.
Leukaemia Net suggests that anything above 0.1% after a

by cdw5000 (Jul 31)

Hi Kerrie,
Welcome to the forum. I'm sorry to hear your husband was diagnosed with CML, but I'm really pleased to see he had a fantastic response to the Tasigna. He has easily achieved a Major

by Kerrie (Jul 31)

Hi - my hubbie was diagnosed in Feb 2015 in the Chronic stage - he is current on Nilotinib (Tasigna) Got the results today for his BCR-ABL test - its at 0.046% - consultant is happy :-) Is there
Category: Blood tests

Replies: 2

Last updated: 1 August 2015
Richard on 24 July 2015

Category: Other conditions

Replies: 2

Last updated: 26 July 2015

Wish me luck!
by chrissie (Jul 26)

Wishing you lots of good luck for your forthcoming op. It sounds as if you've been through the mill so I wish you plain sailing ( as far as is possible) from now on. Will be thinking of you on Sat

by Olivia (Jul 25)

I hope the operation eventually goes ahead, that all goes smoothly for you, and that your pain is relieved. It sounds as though you have had a very difficult time getting this far.

Good luck

by Richard (Jul 24)

I am due to go into hospital on 1st August for a discectomy and two decompressions on my spine. After two years of leg pains, then bilateral sciatica, then numbness and cramps, the hospital decided
Category: Other conditions

Replies: 2

Last updated: 26 July 2015
Gst on 23 July 2015

Category: Treating CML

Replies: 13

Last updated: 8 August 2015

Delaying a SCT
by darley (Aug 8)

I hope everything goes as well as possible.

by sandy craine (Aug 4)

Hi G,

I am glad you are planning a reduced intensity SCT. This is the protocol I had but with post transplant TKI therapy to ensure effective control of any residual disease and keep it at a

by Gst (Aug 3)

Hello again,
I'm good thanks but still very anxious as it's not long now before I'm admitted. Your thread has made me think about it all this evening and the fact that the SCT will be life changing

by Gst (Aug 3)

Hi,
I am planning for a reduced intensity SCT.
Category: Treating CML

Replies: 13

Last updated: 8 August 2015
robert mcadie on 23 July 2015

Category: Side effects

Replies: 11

Last updated: 13 August 2015

dasatinib
by robert mcadie (Aug 13)

Quick update, I am starting on 100mg bosutinib next Monday. Raigmore hospital did not have a license to dispense it but applied for one and got it. My consultant is starting me off on 100mg but she

by David Fitz (Aug 6)

I've been having a few problems with elevated pulse and a pounding heart recently too. Not too bad, but enough to warrant it to be checked out.
Chest x-ray, CT and EKG all were pretty normal.

by robert mcadie (Aug 4)

Thanks for advice Sandy. Still waiting for phone call from hospital but am very short of breath when I do anything physical- stairs, washing car etc. Will defo ask for a second opinion in Glasgow.

by wshi2001 (Jul 31)

hi, Rab,

I've just stopped dasatinib 3 days ago, the symptoms of heart has improved a lot, I can finally have a good night of sleep. I'm not sure why you have to take 800mg Imatinib at this
Category: Side effects

Replies: 11

Last updated: 13 August 2015
Olivia on 21 July 2015

Category: Getting help

Replies: 2

Last updated: 22 July 2015

Article in Daily Telegraph
by sandy craine (Jul 22)

I too hid my diagnosis from most people in the first few weeks.... especially my parents and my daughter. I suppose the shock of it all, due to the fact that I was obviously about to enter

by cdw5000 (Jul 21)

Only my boss and head of HR know I have CML. Admittedly I've move companies since dx, but nobody is any the wiser. A bizarre sense of 'wanting to carry on as normal' kept me in the job I was in when

by Olivia (Jul 21)

This article appeared yesterday (20 July). Although the writer doesn't say as much, I suspect her husband has cml... http://www.telegraph.co.uk/lifestyle/11738594/I-kept-my-husbands-cancer-...
Category: Getting help

Replies: 2

Last updated: 22 July 2015
chrissie on 21 July 2015

Category: Treating CML

Replies: 17

Last updated: 8 September 2015

DESTINY update
by chrissie (Sep 8)

I'm into the 11th month now. Just got my PCR back from HH for Month 10 after a 3 week wait - still hanging in there at 0.034% IS after a couple of earlier blips. I guess as we're tested every 4

by darley (Aug 30)

Check up last week and all remains well and good so far. After 15 years on imatanib if all remains well then this could be my last month on it :)

by darley (Aug 19)

I'm a month behind you. I go to Leeds next Wednesday and if everything is good that will be me stopping glyvec after 15 years on it.

by chrissie (Aug 18)

..... with your treatment free "new" life. You've certainly got nice low PCRs well sustained over the past year. We shall all be watching with interest, so please keep us posted.
Grapefruit for
Category: Treating CML

Replies: 17

Last updated: 8 September 2015
chrissie on 10 July 2015

Category: Uncategorised

Replies: 1

Last updated: 10 July 2015

DESTINY and HH results
by darley (Jul 10)

I've just completed month 10. Managed from Leeds. No delays.
So far so good :)

by chrissie (Jul 10)

Hi
I'm in month 9 of DESTINY but am finding my PCR results from HH are very slow in coming through. Blood is taken at my local hospital (Exeter) every 4 weeks on the trial and sent to HH but I
Category: Uncategorised

Replies: 1

Last updated: 10 July 2015