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cousineg on 26 April 2014

Category: Uncategorised

Replies: 2

Last updated: 28 April 2014

René Quinton and his Marine Plasma - Can we use this plasma to manage CML side effects?
by sandy craine (Apr 28)

I have had a look at some of the products and the overall rationale for why this might be helpful... i.e by replacing minerals and maintaining a healthier PH level (more alkaline than acidic).
I

by darley (Apr 26)

What the heck????

by cousineg (Apr 26)

Rene Quinton saved several thousands of children's lives in France and in Egypt at the last century.
Rene Quinton was the first person to discern and to investigate the similarity between sea water
Category: Uncategorised

Replies: 2

Last updated: 28 April 2014
sandy craine on 25 April 2014

Category: Uncategorised

Replies: 2

Last updated: 26 April 2014

'Having cancer is not a fight or a battle'- Kate Granger
by darley (Apr 26)

I've said "if you really have to have a cancer, then CML is one of the better ones to choose" ;)
I'm also not big into this "fighting cancer" thing. I prefer to see it as "living with" and "

by Olivia (Apr 26)

Thank you for putting this up, Sandy.
Kate's view is much more like life as I see it than the slogan that's going round Edinburgh at the moment, advertising the Moon Walk: "Watch out, cancer,

by sandy craine (Apr 25)

At last someone has said it.

Sandy
"She lost her brave fight." If anyone mutters those words after my death, wherever I am, I will curse them.
I would like to be remembered for the positive
Category: Uncategorised

Replies: 2

Last updated: 26 April 2014
cmlblogger on 22 April 2014

Category: Uncategorised

Replies: 6

Last updated: 23 April 2014

Where can I get the correct form for free prescriptions
by cmlblogger (Apr 23)

looks like I don't have correct version
thanks everyone
rob

by Richard42 (Apr 23)

Hi
I have just renewed mine. (and yes - I did receive a reminder.) The relevant boxes are on the bottom left of the form, separate from the other conditions. They refer to being treated, or having

by darley (Apr 22)

Did you get the right form? Might be best if you get it from your GP. They'll make sure you get the right one and if necessary help you complete it.

by cmlblogger (Apr 22)

thanks all - I have found this on the net
but what did you fill in on that form as it mentions conditions such as , epilepsy, diabetes, etc etc but not cancer/leukaemia
Category: Uncategorised

Replies: 6

Last updated: 23 April 2014
martin1960 on 20 April 2014

Category: Uncategorised

Replies: 3

Last updated: 22 April 2014

Recently diagnosed December 2013
by darley (Apr 22)

Hi,
I once went to outpatients at the centre in Leeds and bumped into someone who lived in the next village to me and who also had CML.
I've never troubled myself to consider 'why me'. I don't

by Lucas (Apr 21)

Hi martin!
I have a friend, who is also my neighbour, who has CML since 2002. Don't worry too much about the 10% in 3 months, the difference between optimal and suboptimal response at 3 months it's

by sandy craine (Apr 21)

Hi Martin and welcome to this forum and website. I am glad it has been helpful to you since your recent diagnosis, a time which, as you say, is very difficult to deal with.
Firstly, congratulations

by martin1960 (Apr 20)

Hi everyone,

I would like to introduce myself to the forum and have been reading this site since being diagnosed in early december 2013 and find it very informative and supportive. As you all
Category: Uncategorised

Replies: 3

Last updated: 22 April 2014
Thomaskk on 17 April 2014

Category: Uncategorised

Replies: 4

Last updated: 19 April 2014

low vitamin D and elevated liver enzyms
by sandy craine (Apr 19)

Hi Thomas,

Sorry to hear you have this extra complication. I do not know anything much about GS but I have found quite a good website which you might find some useful information- particularly

by Lucas (Apr 18)

Hi thomas!! how are you?
I'm fine. I did not receive the results. I'm trying to stay calm and enjoy life now. I have an appointment in 2 weeks. fingers crossed!!
:)

by Thomaskk (Apr 17)

Long time !
How are you doing? Did you get your BMB report?
Thomas

by Lucas (Apr 17)

Hi thomas, how are you?
Vitamin D is related with osteoporosis and with others chronics diseases. It's very common nowadays. If your doctor thinks it's not related with gleevec, you should look
Category: Uncategorised

Replies: 4

Last updated: 19 April 2014
ruddoug09 on 15 April 2014

Category: Uncategorised

Replies: 5

Last updated: 15 April 2014

Protein shake impact?
by ruddoug09 (Apr 15)

Thanks darley, I'll do some more reading on it! :)

by ruddoug09 (Apr 15)

Thanks Sandy, I generally run fist thing in the morning before food and I do tend to drink plenty of water before, during and after running so I'd ruled that out. I'll give the shakes a to I think

by ruddoug09 (Apr 15)

Thanks Sandy, I generally run fist thing in the morning before food and I do tend to drink plenty of water before, during and after running so I'd ruled that out. I'll give the shakes a to I think

by darley (Apr 15)

I've used a product called maxijul and that my consultant said did not contraindicate. I wrote about it recently here:
http://www.cmlsupport.org.uk/node/8313
Category: Uncategorised

Replies: 5

Last updated: 15 April 2014
lsunder on 14 April 2014

Category: Uncategorised

Replies: 3

Last updated: 15 April 2014

Eye Bleeds - subconjunctival hemorrhage
by Dennis (Apr 15)

The advice I've had from a number of consultants and GP's is that this isn't a problem. I once had one in both eyes at the same time, - that scared a lot of folk. Lol.

by chrissie (Apr 15)

Yes, I have been on IM 400mg since Sept 2009 and I get eye bleeds - which seem to occur more often these days and last for longer. (Originally it happened once or twice a year).In fact, the last one

by Steven Davies (Apr 14)

I to had eye bleeds regularly whilst on imatinib. As far as I was concerned my eyes were examined bu the optician on a regular basis. Once I changed to Nilotonib the eye bleeds stopped.

I

by lsunder (Apr 14)

Hi
I am CML patient on glivec 400 for the last 12 years. I now get frequent eye bleeds (once a month). Is there any solution for this? Can this be prevented? Is it harmful in the long run for the
Category: Uncategorised

Replies: 3

Last updated: 15 April 2014
Steven Davies on 12 April 2014

Category: Uncategorised

Replies: 2

Last updated: 15 April 2014

Two in a row
by sandy craine (Apr 15)

Hi Steven... these results look good for an excellent response (and you are on half dose?). Well done and good luck for your next result.
Sandy

by darley (Apr 12)

Good luck for a bright future

by Steven Davies (Apr 12)

I've just had my PCR back from the Hammersmith and I have had my second 0.003 in a row.. I feel a good trend coming. I'm keeping my fingers crossed.
Category: Uncategorised

Replies: 2

Last updated: 15 April 2014
sandy craine on 12 April 2014

Category: Uncategorised

Replies: 2

Last updated: 13 April 2014

Patient perspectives of treatment including orphan medicines for those with rare diseases
by darley (Apr 13)

It's just come off the listing. It does say but it's not particularly user friendly.
CML is down as rare illness though

by Olivia (Apr 13)

We had a go at this survey, and couldn't find imatinib on the list of orphan drugs...

by sandy craine (Apr 12)

If you would like to take part in this ABPI commissioned survey see the link at the top of this page- in red.
Sandy
Category: Uncategorised

Replies: 2

Last updated: 13 April 2014
sandy craine on 12 April 2014

Category: Uncategorised

Replies: 2

Last updated: 14 April 2014

Patient perspectives of treatment including orphan medicines for those with rare diseases
by sandy craine (Apr 14)

I must say I failed to notice that they had only sent me the carer one! thanks for putting the patient link on Chris.
Sandy

by cdw5000 (Apr 14)

The link Sandy posted is for carers, this link is for patients:
http://www.smartsurvey.co.uk/s/ABPIpatientSurvey
Chris

by sandy craine (Apr 12)

*Who has commissioned this survey?

This survey has been commissioned by the Association of the British Pharmaceutical Industry (ABPI).

The survey is being conducted by an independent
Category: Uncategorised

Replies: 2

Last updated: 14 April 2014
shelly on 8 April 2014

Category: Uncategorised

Replies: 11

Last updated: 16 April 2014

Low Platelet Sprycel.
by Lucas (Apr 16)

you're welcome, shelly.
I'm doing good. actually, i only felt sick after the diagnosis (i think it was my mind and the fear). I live a pretty normal life with mild side effects (sensible skin). i

by RodM (Apr 16)

Good luck on the test, he'll have to get very used to those! I think my biggest has been around 15 vials taken in one go, but some of the nurses are very good at it.
My partially-educated

by shelly (Apr 16)

Hi Rod -you sound like your symptoms and treatment plan is almost the same. So glad you are doing well and appreciate your response. You have certainly given me hope in this learning curve.

by shelly (Apr 16)

Hi Lucas

Thanks for your advice- Much appreciated. Hope you are well on the way to recovery.
Category: Uncategorised

Replies: 11

Last updated: 16 April 2014
david barnes on 5 April 2014

Category: Uncategorised

Replies: 1

Last updated: 5 April 2014

tai chi
by chrissie (Apr 5)

Hi Dave
I have been doing Tai Chi for 5 and a half years (was diagnosed 5 years ago this coming Sept). I found, during the anxiety of diagnosis, that it helped me mentally no end and kept me calm

by david barnes (Apr 5)

Hi

I have been doing tai chi for about 6mths and have seen an increase in my hb level ,just wondered if any other one with clm did tai chi

Dave
Category: Uncategorised

Replies: 1

Last updated: 5 April 2014
nigel on 4 April 2014

Category: Uncategorised

Replies: 5

Last updated: 20 May 2014

6 monthly PCR tests from now on - and a good solid MMR
by sandy craine (May 20)

Hi Nigel, thanks for your post. I think it will reassure a lot of people.
0.07% is a great result! many congratulations on achieving that and you must be really pleased that your 'instincts' to

by nigel (May 20)

Hi all, Like to keep all posted with progress for those on Imatinib as it can be a journey and slower acting than 2nd Gen TKI's, and perhaps early days.
Started at 95% PH+ on Dx. fell to 24% PCR at

by darley (Apr 10)

I'm possibly in a minority position in so far as I had a matched unrelated transplant a long time ago.... 17th May 1996, so just coming up to 18 years ago and after a couple of years of being

by nigel (Apr 5)

Many thanks as always. Nigel
Category: Uncategorised

Replies: 5

Last updated: 20 May 2014
sandy craine on 4 April 2014

Category: Uncategorised

Replies: 4

Last updated: 10 April 2014

Impact of Healthcare Settings on Survival Time of Patients With CML Research · March 12, 2014
by darley (Apr 10)

I'm not at all surprised by this. Indeed it seems to me to just be confirming what common sense (and personal experience) would tell me is going to be blinding obvious.
It was 20 years ago when I

by karen (Apr 7)

Specialist centres are really the best way if there are any queries but, as you say, it depends on willingness to push patients through to them from the local hospital.

Bosutinib seems to be

by sandy craine (Apr 5)

Not sure Karen, but I suspect not- however,I think we would all agree that in the case of any serious disease it is crucial that you are treated at a centre that has experienced/expert clinicians or

by karen (Apr 4)

Seems quite an interesting result - have they ever done anything like this in the UK?
Karen
Category: Uncategorised

Replies: 4

Last updated: 10 April 2014
sandy craine on 2 April 2014

Category: Uncategorised

Replies: 4

Last updated: 30 April 2014

Dav- low platelets/nilotinib
by Dav33 (Apr 30)

Hi Sandy,
Firstly apologies for no reply after you took your time to reply to me in detail. I am self-employed so at some stage had to jump back into everything to try and catch up on lost ground.

by darley (Apr 10)

Hi,
I'm new to this forum but most definitely not new to CML.
I was diagnosed nearly 20 years ago and have been through a roller coaster ride of treatment, emotions and results since then.

by sandy craine (Apr 2)

Hi Dav,(is that the right name?)
I am glad you feel more connected to this forum now. The fact that you are being treated at a general heamatology dept. must be a little disconcerting, however these

by Dav33 (Apr 2)

Hi Sandy,
Many thanks for your comments and wishes. It is really comforting to hear advice from someone else. I am not at a specialist CML clinic, but I am being treated in a general hospital. The
Category: Uncategorised

Replies: 4

Last updated: 30 April 2014
Sneezy123 on 29 March 2014

Category: Uncategorised

Replies: 4

Last updated: 31 March 2014

Log Help
by David Fitz (Mar 31)

PS. It might be useful to look at a thread I started some months ago when I had a few increases in a row. I was worried because I had some consecutive rises, but lo and behold it moved back in

by sandy craine (Mar 31)

Hi Frank,
I agree that this result is more likely to be a 'blip' rather than a more important 'trend'. This is not a big increase as David has said and you should not be too concerned.
It might be

by Thomaskk (Mar 29)

Hi
If it is IS it is just more than 1 fold increase which is more the pcr error range ,
How long have you been holding the pcru ?

When did you achieve CCYR , MMR and first PCRU ?
Are you on

by David Fitz (Mar 29)

Hi,
From my (poor!) maths, it looks like that increase is less than half a log, from a very low base. I guess that's the sort of 'noise' we often see between test results. They're not going to be
Category: Uncategorised

Replies: 4

Last updated: 31 March 2014
Lucas on 26 March 2014

Category: Uncategorised

Replies: 6

Last updated: 10 April 2014

News from Brazil!
by Lucas (Apr 10)

Hi, darley!! I'm glad you're well after all these years!
I had a BMA on monday and it didn't hurt. actually, it was painless. Now i'm waiting for the results. fingers crossed!!

by darley (Apr 10)

Nearly 20 years on from my diagnosis and I've had a LOT of BMA's. They're not the most pleasant of experiences and given a choice I'd choose to go somewhere else but don't be overly worried.

by Lucas (Mar 27)

Oh, man! i hope you have some good tv shows in england :D
I have two friends who had BMAs and they told me the same thing as you said: it's not painful, it's "strange", "uncomfortable".
What team do

by David Fitz (Mar 27)

Yes, I'm well. I am well, just recovering at home from a week in the hospital (surgery to correct a stomach / oesophagus problem) so watching a lot of daytime TV! Actually the surgery should help my
Category: Uncategorised

Replies: 6

Last updated: 10 April 2014
Thomaskk on 26 March 2014

Category: Uncategorised

Replies: 1

Last updated: 27 March 2014

CML progression after CCYR in 3 months.
by Lucas (Mar 27)

Hi Thomas
Your chances of progression are low, but nothing in life is 100% sure. Try to relax a little and think about how you are doing. You were diagnosed very early and had a great response. 95%

by Thomaskk (Mar 26)

Hi
Has any one experienced CML progression after acheiving CCYR in 3 months of Gleevec treatment ?
Regards
Thomas
Category: Uncategorised

Replies: 1

Last updated: 27 March 2014
Lucas on 25 March 2014

Category: Uncategorised

Replies: 9

Last updated: 11 April 2014

What do you do to help your body to fight CML?
by RodM (Apr 11)

Enjoy each day to the best of your ability - what more could you want? :)

by Lucas (Apr 10)

Hi, darley, how are you?
Thanks for the kind words. Actually, i have a much more positive attitude now. i fell great, but my doctors told me not to do hard exercises because my platelets are low (86

by darley (Apr 10)

Frankly if my specialist told me that standing on my head with my finger up my backside would help then I'd do it! ;)
Seriously though I'm not one for fads and notions that there's going to be some

by Lucas (Mar 28)

Hi Ece!
I'm glad you're doing great on Tasigna. with a PCR under 0,1% you're in a great place and probably CML will not be a great concern in the future for you. :)
TKI therapy is our savior and
Category: Uncategorised

Replies: 9

Last updated: 11 April 2014
Thomaskk on 23 March 2014

Category: Uncategorised

Replies: 1

Last updated: 23 March 2014

Any one from Australia ? ( cx 5461 )
by sandy craine (Mar 23)

Hi Thomas,

CX5461 is being studied for its potential in treating aggressive haematological malignancies - i.e. AML and Multiple Myeloma. Both of which are entirely different diseases to CML

by Thomaskk (Mar 23)

Hi
I understand that cx 5461 trails are going on at Peter Mac . Has anyone got an update ?
Thomas
Category: Uncategorised

Replies: 1

Last updated: 23 March 2014