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glo on 20 February 2016

Category: About CML

Replies: 6

Last updated: 20 February 2016

awaiting results of philedelphia test
by glo (Feb 20)

Hi-Thank you so much for validating my thoughts/concerns, etc. I sent a lenthy reply to Sandy's message, which of course the thoughts, cudos, etc are meant for you as well! I really

by glo (Feb 20)

Hi-Thank you so much for validating my thoughts/concerns, etc. I sent a lenthy reply to Sandy's message, which of course the thoughts, cudos, etc are meant for you as well! I really

by glo (Feb 20)

WOW!! Thanks for the clarification! Here, I thought I was such a wonderful researcher and I was fairly mixed up. I really thought CMML and CML were really both the same thing...

by darley (Feb 20)

You sound like a seasoned realist and I'm sure you're anticipated what other seasoned campaigners are likely say.
Of course the test you're having isn't taken for no good reason....
Category: About CML

Replies: 6

Last updated: 20 February 2016
rsgiles on 3 February 2016

Category: Blood tests

Replies: 6

Last updated: 20 February 2016

Worried about test
by glo (Feb 20)

I am new here, but I like that attitude-I always tell my twin sister, "control your emotions, don't let your emotions control you!" This has gotten me through 52 years of living

by darley (Feb 6)

So what's making you worry? What's different about your health since you knew you had this little blip? Why have you chosen to worry about it?
As you said you've

by sandy craine (Feb 4)

Please be reassured by others advice of 'not to worry' about your latest PCR result. Even if you have been undetectable before- pcr testing is extremely sensitive to all sorts of factors,

by nigel (Feb 3)

I truly believe you shouldn't worry about 1 increased PCR result, trends count and are looked at. Even if it is not undetectable now the result is not far off MR4 which in anyone's eyes is
Category: Blood tests

Replies: 6

Last updated: 20 February 2016
Frenchguy on 14 February 2016

Category: Uncategorised

Replies: 6

Last updated: 18 February 2016

Severe general pains
by sandy craine (Feb 18)

Hi Francis,
sorry these pain issues have not lessened even though you are taking a different TKI now. You molecular response is good- so at least you have some good news. You are certainly not alone

by johnw1001 (Feb 17)

Hi Francis,
Severe musculo-skeletal issues
I dont know if my experiences might help but have been on Glivec/imatinib for 9 years now but about nine months ago had a disturbing episode of

by Lucas (Feb 16)

Francis, i know other patient who is very intolerant to all tki but is doing well over more than 10 years of treatment. I'll ask him if i can send you his e-mail. i think you should chat with

by Frenchguy (Feb 16)

Hi Lucas,

Thanks for your concern, the thing is that I am getting worse day by day, feeling extremely weak like I never was before, especially in my legs which are painful and I never knew
Category: Uncategorised

Replies: 6

Last updated: 18 February 2016
David Ryner on 17 February 2016

Category: About CML

Replies: 0

Last updated: 17 February 2016

New Model for the Cancer Drugs Fund (England)
by David Ryner (Feb 17)

Recent developments in access to CML drug treatments in England
Background:
Some of you may be aware of the NHS England public consultation on a new set of proposals for the way the Cancer Drugs
Category: About CML

Replies: 0

Last updated: 17 February 2016
Jadey on 5 February 2016

Category: Uncategorised

Replies: 9

Last updated: 17 February 2016

Hi
by MartinZA (Feb 17)

Hi Jade
I'm so sorry that you have to deal with such a life-changing diagnosis at age 20. I am 37 and three months ago today I received my devastating news and I know how you feel - I

by darley (Feb 9)

Glad to hear that already your results are going in the right direction. Now for some practical suggestions with regard to things you've mentioned:
Veins: Here's

by Jadey (Feb 9)

Thank you so so much to all of you, Christie, Elaine and Nigel! I'm glad to hear everyone's doing so well, I'm getting to grips without it now and had my first result today and I've

by nigel (Feb 8)

Hi Jade

Welcome to the Group, I was very sorry to hear about your recent diagnosis, this first few weeks and months particularly can be unbelievably scary, we have all been there!

You
Category: Uncategorised

Replies: 9

Last updated: 17 February 2016
sandy craine on 11 February 2016

Category: About CML

Replies: 4

Last updated: 14 February 2016

2016 UK CML Patient Day
by darley (Feb 14)

I find Web casting on demand to be most useful. I've tended to watch them when I can and also just skip the bits I'm not interested in. (I'm self employed with my own

by chrissie (Feb 13)

Just wondering how you are these days, John?
Best,
Chrissie

by Olivia (Feb 12)

Hi Sandy
I would like to second John's plea for a session on withdrawal and the possible effects.
Also, a briefing on what the introduction of generic imatinib will mean for those of us

by Parklife (Feb 11)

Hi Sandy
Thanks for letting us know and giving us the opportunity to contribute.
Could I personally suggest a topic on TKI withdrawal, or continued side effects after discontinuation of TKI's?
Category: About CML

Replies: 4

Last updated: 14 February 2016
johnw1001 on 31 January 2016

Category: Treating CML

Replies: 3

Last updated: 8 February 2016

Generic imatinib again -some updates
by nigel (Feb 8)

Hi John
Thanks for a very interesting and detailed post and synopsis with regard to Generic Imatinib. I likewise shared your concerns with regard to the potential change that is on the way. However

by johnw1001 (Feb 5)

Hi Moirah,
Thanks for reading my posting and replying .Welcome to the CML/Glivec club -yes it certainly keeps us alive .Trust you are doing well in your first year which can be quite challenging.I

by Moirah (Feb 3)

Thank you for posting this. This is something im very worried about i was diagnosed july last year and doing well last pcr 6 months 0.067%
Can we really ask for monthly pcrs if changed to the

by johnw1001 (Jan 31)

Hi All,
There have been a few threads on this before and this included a posting from myself so no apologies for another separate thread as this for many of us will probably involve a switch from
Category: Treating CML

Replies: 3

Last updated: 8 February 2016
Samah27 on 5 February 2016

Category: About CML

Replies: 0

Last updated: 5 February 2016

CML and pregnant
by Samah27 (Feb 5)

Have been diagnosed with chronic meyloid leukemia 16 years ago. began prescribing glivec and I kept it for eight years after no longer responds physically to him then dropped for medication
Category: About CML

Replies: 0

Last updated: 5 February 2016
Jyellak on 4 February 2016

Category: Blood tests

Replies: 3

Last updated: 4 February 2016

Newly diagnosed question about PCR test at 3 months
by David Fitz (Feb 4)

I wouldn't get too hung up about 3%. After all, 10% is "optimal", so 13% is pretty damn good!!
Many of us here didn't get that 10% at 3 months figure, yet are doing great. Your

by Jyellak (Feb 4)

Thanks Sandy, appreciate your reply.

by sandy craine (Feb 4)

Hi,
I think you are doing very well to get to 13% at 3 months, which is virtually at the ELNet 3 month goal of 10%. I am sure your doctor is fully confident in your response and would not consider a

by Jyellak (Feb 4)

Was diagnosed end of October2015. Had my first PCR test at three months. Results said 13.128 IS. Onc said that's very good number but everything I've seen indicates that's supposed to be under 10
Category: Blood tests

Replies: 3

Last updated: 4 February 2016
sandy craine on 29 January 2016

Category: Uncategorised

Replies: 0

Last updated: 29 January 2016

Charity Football Match/Sportsman Dinner to raise funds for CML research in Glasgow.
by sandy craine (Jan 29)

Hi all.
My name is Vignir Helgason and I'm a researcher at the University of Glasgow: see link to website www.gla.ac.uk/researchinstitutes/cancersciences/staff/vignirhelgason/.
My group works on
Category: Uncategorised

Replies: 0

Last updated: 29 January 2016
nigel on 28 January 2016

Category: Treating CML

Replies: 1

Last updated: 29 January 2016

Dr. Michael Mauro speaks after the ASH 2015 conference about CML
by sandy craine (Jan 29)

Thanks for the link Nigel.... I tried to put this on our video section but Patient Power will not give permission for that- which is a shame as they used to share freely. But at least we can watch

by nigel (Jan 28)

Dr. Michael Mauro speaks after the ASH 2015 conference about CML, where we are, and where we are going, together with some brief detail of AML 001 a "4th Generation" inhibitor.
Category: Treating CML

Replies: 1

Last updated: 29 January 2016
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