You are here

Forum

MartinZA on 20 January 2016

Category: Uncategorised

Replies: 9

Last updated: 29 January 2016

New member of the club nobody wants to join!
by MartinZA (Jan 29)

Thank you so much, darley - I have read so many of your posts and I find your recovery and positive attitude inspirational. To come back from blast crisis - WOW. Watching rugby at

by darley (Jan 29)

Good news with your results after such a short time. Let's hope they continue to go the right way. Enjoy Panama. I'll soon be at 6 Nations Rugby watching England

by Lucas (Jan 28)

oh, man, i did the same as you: read all the stories here. There's much inspiration and hope here. my spleen was very enlarged and it was scary. i know many people with high sokal who responded

by MartinZA (Jan 28)

Hi Lucas
Thank you so much for the words of encouragement - indeed, your story has inspired me because I hope that I can also do as well as you. I had read your posts about your enlarged
Category: Uncategorised

Replies: 9

Last updated: 29 January 2016
cdaugh22 on 20 January 2016

Category: Treating CML

Replies: 7

Last updated: 27 January 2016

Looking for a post-transplant patient to ease concerns
by darley (Jan 27)

I try to not worry about what I can't control and effect. I also try to stay positive and hopeful. I've done that in a variety of ways. It helps because my partner in life

by cdaugh22 (Jan 27)

Darley,
I'm so sorry you went through all of that to get where you are today. It sounds like you are a very positive person though and that is why you have made it through that incredibly

by cdaugh22 (Jan 27)

Sandy,
He did have mutation testing done and it was negative. His platelets got as low as 20. He is suppose to go to the Mayo Clinic hopefully sometime next month so we can see the CML specialist

by darley (Jan 23)

How old were you at the time of transplant? What phase were you diagnosed in? Did you fail previous TKIs prior to transplant? How have you been doing since the transplant? Sorry for all the ?????
Category: Treating CML

Replies: 7

Last updated: 27 January 2016
Yalcos80 on 25 January 2016

Category: Uncategorised

Replies: 4

Last updated: 26 January 2016

Pcr
by Yalcos80 (Jan 26)

Hi Lucas,

thanks for the advice i will wait for the next one.

by Lucas (Jan 26)

hey, yalcos, many here have variations in the PCR - like me. PCR test isn't that accurate and there's a margin of error of half log. I don't think you are losing response and, as i said

by Yalcos80 (Jan 26)

Hi lucas thank you for your message, to be clear i was for 2 years on 300mg glivec and all went well it was not detectable and after 2 years it was dubious they told me they can see it under the

by Lucas (Jan 26)

hi, yalcos.

Let me see if i understand what you said: you had undetectable results for 3 years and you last result was detectable, but bellow the detection limit, isn't it? if that's
Category: Uncategorised

Replies: 4

Last updated: 26 January 2016
trevorcadieux on 21 January 2016

Category: Uncategorised

Replies: 0

Last updated: 21 January 2016

Help for a friend who recently relapsed
by trevorcadieux (Jan 21)

Hi Everyone, I apologise if this isn`t appropriate for the forum but I`m just trying every avenue I can. A friend of mine just relapsed with his leukemia and is unable to work and support his
Category: Uncategorised

Replies: 0

Last updated: 21 January 2016
Jyoti Ali on 27 December 2015

Category: Drug-drug interactions

Replies: 4

Last updated: 19 January 2016

Paracetamol while on Dasatinib
by David Fitz (Jan 19)

I was told that it's OK once or twice, but don't make a habit of it.
I was given a couple of packs of plain old codeine to use for painkillers if needed, which I rarely take. One every

by Jyoti Ali (Jan 17)

Thanks Nigel,
Hubby was on Imatinib at first (for about 7 months) and was told not to take paracetamol at all. Then due to signs of liver damage and his BCR-abl numbers going up, he was changed to

by johnw1001 (Jan 3)

Confusion over pain killers and drug interactions
Hi Nigel,
Interesting to refer to the drugs.com drugs checker;I have used this for imatinib but not for dasatinib.As a general point there seem to

by nigel (Dec 27)

Hi, I have found alot of contradictory guidance is given on Paracetamol and Ibuprofen generally, one doctor says you can take one with one TKI or the other, and then another says not. I am on
Category: Drug-drug interactions

Replies: 4

Last updated: 19 January 2016
LS on 13 January 2016

Category: Food & fitness

Replies: 5

Last updated: 17 January 2016

Fasting program
by darley (Jan 17)

I got the distinct impression from the OP that rather than this being properly and appropriately linked to something like a "fasting window" that it was one of those totally whacky ideas

by LS (Jan 14)

Thanks! Good to know how others look at it!

by nigel (Jan 14)

Likewise, I must agree, to keep a good balanced diet, and your body " fuelled " to me seems quite logical and the route I would and do take.
Are you sure the fasting is not related to a

by David Fitz (Jan 14)

I strongly agree!
The most important thing is to keep yourself as healthy as possible, so a good balanced diet with plenty of nutritious food. I can't see how depriving your body of the
Category: Food & fitness

Replies: 5

Last updated: 17 January 2016
sandy craine on 30 April 2014

Category: Uncategorised

Replies: 10

Last updated: 17 January 2016

Nilotinib- stomach pain - pantoprazole
by Richard42 (Jan 17)

I've posted this before but just for completeness, my original CML consultant suggested omeprazole for the moderate to severe heartburn I was getting with imatinib. All the other

by sandy craine (Jan 15)

I would add Matula Tea to that list John. My mother suffered badly for years from H.Pylori infection and she found great relief from her symptoms by using this tea. It is expensive but you only need

by johnw1001 (Jan 14)

PPIs a blanket approach-then interactions!
Hi All,
I suspect that the provision of PPIs as a remedy for stomach issues and irritation is a blanket approach from GPs . However a significant

by David Fitz (Jan 11)

Hi Diana,
I take Sprycel / dasatinib, which has a similar requirement for stomach acid and thus isn't good to mix with PPIs. PPIs are quite long-lasting so it's not really good to take
Category: Uncategorised

Replies: 10

Last updated: 17 January 2016
Carol on 1 December 2015

Category: Uncategorised

Replies: 1

Last updated: 16 January 2016

Patient Carer Support Meeting on Saturday 20th February 2016 at the Hammersmith Hospital London
by Carol (Jan 16)

Limited places left.. It is also hoped to have a visit to the Lab where the PCR test is done.. That would be very interesting.. Perhaps this post could be pinned .thanks everyone

by Carol (Dec 1)

Hi All Support Group Meeting at Hammersmith Hospital EVERYONE WELCOME LEUKAEMIA PATIENTS SUPPORT GROUP CATHERINE LEWIS CENTRE RECEPTION HAMMERSMITH HOSPITAL Du Cane Road London W12 0HS
The next
Category: Uncategorised

Replies: 1

Last updated: 16 January 2016
Anonymous (not verified) on 26 November 2015

Category: Uncategorised

Replies: 1

Last updated: 13 January 2016

Just got diagnosed
by sandy craine (Jan 13)

HI... welcome to this forum. I am so sorry to have missed your post- but please do ask here if you have any questions as you go on through your treatment. It is a good idea to read the CML facts

by Anonymous (Nov 26)

I just got diagnosed with cml, curious on what to expect, and what to expect while taking gleevec?
Category: Uncategorised

Replies: 1

Last updated: 13 January 2016
Yasmina on 12 January 2016

Category: About CML

Replies: 2

Last updated: 13 January 2016

Bad news :(
by Yasmina (Jan 13)

Thanks ver y so much I do apreciate your words. Thanks for taking your time and gide me true this situation. God bless you.

by darley (Jan 12)

Hello and welcome to the club that no-one wanted to join.
No-one can answer that question but I can tell you that I was diagnosed 22 years ago when I was 43 years of age and I have a wonderful

by Yasmina (Jan 12)

To months ago I have revived a phone call that change my life . I am 45 years old and I have 4 kids and a wonderful husband My kids 24,21,8,and 6. My worries are no different from
Category: About CML

Replies: 2

Last updated: 13 January 2016
Olivia on 17 November 2015

Category: Uncategorised

Replies: 17

Last updated: 9 January 2016

Undetectable!
by wshi2001 (Jan 9)

Hi, David,
Thanks for sharing your experience with us. It gives me hope and I feel a lot better now. My circumstances are quite similar to yours (similar high starting BCR, similar age,

by Olivia (Jan 8)

My 'undetectable' turned out be a blip after all - my latest result is 0.0048, which is still OK by me! I can however hope for more blips...
Olivia

by sandy craine (Dec 30)

Hi David.... well this may be disappointing - undetectable is such a desirable word ;o) - but you are almost at MR4 so given all the variables involved in molecular testing if I were you I would

by David Fitz (Dec 30)

Oh well, back up to 0.02% - from that "undetectable" that I was rather dubious about.
Still, a decent enough number and disregarding that undetectable PCR result, 0.02% is a level I
Category: Uncategorised

Replies: 17

Last updated: 9 January 2016
Peter Miles on 25 January 2010

Category: Uncategorised

Replies: 20

Last updated: 8 January 2016

Dark Palate Anybody?
by acoustic (Jan 8)

Hi, I am a wife of a CML patient diagnosed in 2002 and he was in complete remission in 2003 until now. I am at peace to know that its not only my husband who has the same concern, which is having a

by Peter Miles (Jan 31)

Hi Sue

Sorry I missed your posting hidden amongst the others but thank you.

If you have any further info from Australia I would be very interested to hear (patient confidentiality

by SwanValleySue (Jan 31)

Peter
One of the CML girls in Australia also had the same side effect.
Like yourself - all her consultants and orthodontist etc had never seen this effect or thought it was a known side effect of

by Peter Miles (Jan 29)

Hi Sandy

Many thanks for your helpful reply.

I'm seeing Prof Clark next month and having a biopsy at the Royal Liverpool Dental Hospital early March so I'll know more after that.
Category: Uncategorised

Replies: 20

Last updated: 8 January 2016
Belinda Whitting on 2 January 2016

Category: About CML

Replies: 1

Last updated: 3 January 2016

Daily mail article
by darley (Jan 3)

I didn't see it but there's a couple of things that make me sceptical
1) You said "The Daily Mail" :)
2) If it sounds too good to be true, then it likely will be

by Belinda Whitting (Jan 2)

Hello everyone.. Hope 2016 will be a good year for you all.
Did any one see the daily mail article about a possible cure researched by London Hammersmith hospital.
just wondered if it was true?
Category: About CML

Replies: 1

Last updated: 3 January 2016
sandy craine on 31 December 2015

Category: Uncategorised

Replies: 1

Last updated: 3 January 2016

Happy New Year!
by darley (Jan 3)

Happy new year to you too and to all other readers. Let's all hope for good health, good luck and prosperity. No point dreaming anything other than big :)

by sandy craine (Dec 31)

On behalf or the board and trustees of Cml Support Group, I would like to wish everyone the best for the coming New Year. Things are pretty tough for many people at the moment, both here in the UK
Category: Uncategorised

Replies: 1

Last updated: 3 January 2016
StephenC on 31 December 2015

Category: Uncategorised

Replies: 5

Last updated: 2 January 2016

Hello New to the Forum
by chrissie (Jan 2)

Hi Steve
There are plenty of folks on FB who are experiencing the same muscular skeletal pains as you on Tasigna.These are a common side effect of the meds. Sometimes it helps to see these

by StephenC (Jan 1)

Thank you both for the uplifting words, and encouragement.
Some of the side effects have been very manageable, like I get tired very quickly and I sometimes will get extremely week and have to

by chrissie (Dec 31)

Hi Steve

Sorry, I didn't realise that you're in the US (not being aware of US hospitals, unlike Sandy) so what I said about financial support is not relevant. As well as Sandy

by sandy craine (Dec 31)

Hello Steve, and welcome to this forum- and yes you have found the right place to talk openly with people who have or are experiencing the same as you. As Chrissie has already said- it may not
Category: Uncategorised

Replies: 5

Last updated: 2 January 2016
sandy craine on 31 December 2015

Category: Uncategorised

Replies: 1

Last updated: 31 December 2015

Professor Charles Craddock receives CBE
by nigel (Dec 31)

Hi Sandy, Great news on Charlie Craddock being recognised for outstanding work. I to was under him for a while and was so pleased to have had his care.
Happy new year all, here's to a great 2016

by sandy craine (Dec 31)

Good to see Prof. Craddock recognised for his work. He was my doctor when I was first diagnosed at Hammersmith Hospital in 1998/9 and was always supportive and sympathetic. His pioneering work on
Category: Uncategorised

Replies: 1

Last updated: 31 December 2015
lisachen40 on 29 December 2015

Category: Blood tests

Replies: 2

Last updated: 30 December 2015

PCR result arise
by sandy craine (Dec 30)

Hi,
This can be a problem for those tested in labs (particularly in the US) that do not use a suitably sensitive Q-PCR method. It is likely that the previous lab used did not find Bcr/

by chrissie (Dec 29)

I shouldn't worry as this result on IS is very good and within MMR. Have a look at the PCR primer on this website if you need more information.
Have a happy New Year,
Best
Chrissie

by lisachen40 (Dec 29)

I had two years PCR results Not detected. Recently relocated to another state, the lab also changed, the PCR result come out to be 0.045% IS. This really worried me.
Category: Blood tests

Replies: 2

Last updated: 30 December 2015
MarioCon on 20 December 2015

Category: Uncategorised

Replies: 2

Last updated: 21 December 2015

Hi guys!
by sandy craine (Dec 21)

Hi Marios,
Welcome and good luck with your treatment. I you need any advice please ask- there are many of us on here who can advise you.
Best wishes, Sandy

by chrissie (Dec 21)

Welcome to the site, Marios. I'm sure you will find it very helpful with all the information on here,
Best wishes for Christmas,
Chrissie

by MarioCon (Dec 20)

Hello everyone. My name's Marios, 25, from the sunny island of Cyprus (albeit rainy and moody these last few days). I had no idea such a website existed and to my great pleasure, I stumbled upon
Category: Uncategorised

Replies: 2

Last updated: 21 December 2015
sandy craine on 17 December 2015

Category: About CML

Replies: 1

Last updated: 18 December 2015

Prof. Steve O'brien's summary of ASH 2015
by darley (Dec 18)

Here's the link:

https://www.dropbox.com/s/twrzp76lcbu7qny/ASH%20CML%20report%202015.pdf?...

by sandy craine (Dec 17)

Please see resources page under Articles
Sandy
Category: About CML

Replies: 1

Last updated: 18 December 2015
MekaMa on 15 December 2015

Category: Reproductive health

Replies: 4

Last updated: 18 December 2015

Male sperm and Tasigna
by MekaMa (Dec 18)

Thank you so much Sandy. I agree, in life there are no guarantees. I determine disability everyday and see hundreds of cases where a child who was the product of a normal pregnancy AND delivery as

by sandy craine (Dec 17)

Well if you look hard enough you will find ;o) Click on the link to the Patient Seminar (image at the top of home page) and follow the links to the days presentations. You will find Dr. Graeme Smith

by MekaMa (Dec 17)

Thanks. I did see those responses. Was hoping for something specific to Tasigna but I guess I have to take what I can get. I'm researching because the situation is past pre-conception and the

by sandy craine (Dec 16)

Over the years this has been a very popular discussion thread.... there have been quite a few posts about this subjects so you might like to take a look at some of them here:
http://www.cmlsupport.
Category: Reproductive health

Replies: 4

Last updated: 18 December 2015