You are here

Forum

sandy craine on 23 May 2014

Category: Uncategorised

Replies: 1

Last updated: 24 May 2014

Memorial: Professor John Goldman
by karen (May 24)

It sounds like an amazing day to celebrate the life of an amazing man. We will all be thinking of him today.

Karen

by sandy craine (May 23)

CML patient advocates as well as patients will attend tomorrow's memorial for Prof. Goldman at the Wolfson Theatre, Royal College of Physicians, Regents Park, London. Many of you will know how
Category: Uncategorised

Replies: 1

Last updated: 24 May 2014
Lucas on 21 May 2014

Category: Uncategorised

Replies: 3

Last updated: 22 May 2014

New Milestones and anxiety
by Lucas (May 22)

Thanks for your reply - sandy and chris
It was just my anxiety. I'm doing good. i feel good. I heard about the diference between recomendations and guidelines. I think it's to early to chance tki

by sandy craine (May 22)

Hi Lucas, Chris has said it all really. The only thing I would add is this... you need to put the NCCN guidelines and the ELNet recommendations into context. They are an 'overall picture' of how to

by cdw5000 (May 21)

Hello Lucas,
The medical opinion is deeper, earlier is better; however there are many people who don't meet the milestones who live quite normal lives. At 3.5 years in I still bounce in and out of

by Lucas (May 21)

I had some free time this afternoon and i watched the CML Horizons 2014 videos. In one of them, a professor said that they now want the patients to achieve the milestones earlier than before (CCR by
Category: Uncategorised

Replies: 3

Last updated: 22 May 2014
johnmakus on 15 May 2014

Category: Uncategorised

Replies: 2

Last updated: 16 May 2014

New to CML
by johnmakus (May 16)

Thank you for the info. It has been hopeful.

by sandy craine (May 16)

I am so sorry that your child has been diagnosed with CML- and at such a young age. Over the years there have been quite a few young people and children who's parents or carers have posted on this

by johnmakus (May 15)

Hi everyone.
This seems to be the best site to find information as well as discuss with other people that are living with CML.

My son was diagnosed about 1 month ago with CML. He is 2.5 years
Category: Uncategorised

Replies: 2

Last updated: 16 May 2014
David Fitz on 13 May 2014

Category: Uncategorised

Replies: 6

Last updated: 17 May 2014

Just when I thought I understood PCRs!
by sandy craine (May 17)

The problem is that at diagnosis it is very likely that every cell in the sample will be positive. At this stage q-PCR testing is unreliable, apart from as a qualitative(rather than quantitative)

by Lucas (May 15)

Congrats for the good result, david!! I got confused with my results too! i saw 25% ratio first and thought it was bad, then i looke ate "international scale convertion" and it was 14.4%. When you

by karen (May 15)

Six years in and i still feel that i struggle to understand all the types of results and the fact that you have to be able to adjust them for the International Scale. Still fantastic results for you

by sandy craine (May 15)

Hi David, not just you- I asked my doctor about how it was possible to be more than 100% positive at diagnosis and she explained it like this:
"With respect to the 300% this is not uncommon. The
Category: Uncategorised

Replies: 6

Last updated: 17 May 2014
Thomaskk on 8 May 2014

Category: Uncategorised

Replies: 3

Last updated: 8 May 2014

They say "it is cured" ..see who ?
by Basil from RSA (May 8)

I concur with your statement and conclusion Sandy. TFR can never be seen as a "cure", but merely the Bodies Immune system being able to suppress the effect of the Philadelphia Syndrome. After all

by sandy craine (May 8)

Well there has been a lot of reaction to this on various F/book pages and I can see why people would be upset. I think though that the word 'cure' (and we have had this discussion before) is being

by Lucas (May 8)

well, if we think in that way, diabetes is "cured" too heheh

by Thomaskk (May 8)

Enjoy :)

https://onedown.org/?utm_source=kci_homepage_banner&utm_medium=referral&...
Thomas
Category: Uncategorised

Replies: 3

Last updated: 8 May 2014
Barryphilipallsop on 25 July 2014

Category: Uncategorised

Replies: 2

Last updated: 27 July 2014

DESTINY TRIAL 3Month Results
by Barryphilipallsop (Jul 27)

Hi Sandy
I have not had side effects for many years - not after the first three months on Glivec.

I notice no difference on the reduced 200mg dose.

Many thanks for your ongoing guidance

by sandy craine (Jul 25)

Hi Barry,

thanks for taking time to update us all on your experience so far of the DESTINY study. I do hope you continue to hold your current MMR as you have obviously had 3 stable results- at

by Barryphilipallsop (Jul 25)

I have not posted here for a very long time but thought it would be useful to share my results on the DESTINY trial.

I am one of the very few, six I think, patients involved at Hammersmith.
Category: Uncategorised

Replies: 2

Last updated: 27 July 2014
Lucas on 5 May 2014

Category: Uncategorised

Replies: 4

Last updated: 6 May 2014

sub-optimal, but good
by Lucas (May 6)

Hi everyone,
I went to an appointment today. it was ok. my doctor wasn't so impressed with my PCR, but wasn't too disappointed too. She told me that heard about few cases of lost of reponse with

by RodM (May 6)

Hi
You just can't tell what's going to happen - I had a fast drop below 10% in 3 months, but after 12 months I got to 0.2% and stayed right there for nearly a year (worryingly above MMR) until the

by sandy craine (May 6)

Hi Lucas,

congratulations, a good result for you... even if it is not what you hoped for it is pretty much very near the 3m 10% IS mark. The next 'goal' is CCyR (1.5% - 0%) at 6 months.

by David Fitz (May 5)

Hey Lucas,
That's not a bad result at all. There's a lot of talk about a marker of 10% at 3 months, but it's more individual than that really. If it's any help, I started off with a 321% PCR and
Category: Uncategorised

Replies: 4

Last updated: 6 May 2014
Thomaskk on 5 May 2014

Category: Uncategorised

Replies: 2

Last updated: 6 May 2014

PCRU after 13 years
by sandy craine (May 6)

It's always reassuring to hear such news. Thanks for sharing it.

Congratulations to your friend.
Sandy

by Lucas (May 5)

great! I'm glad to hear good news :)

by Thomaskk (May 5)

Hi
I just want to share a good news. A cml buddy of mine has achieved PCRU today after 13 gleevec years. Party to begin shortly. .....
Thomas
Category: Uncategorised

Replies: 2

Last updated: 6 May 2014
Wellfi on 7 July 2014

Category: Uncategorised

Replies: 23

Last updated: 10 July 2014

Husband diagnosed....terrified
by Dennis (Jul 10)

I was diagnosed at the age of 45, and have now reached 65. I'm as well today as I was just before diagnosis.

Things have changed dramatically since the advent of Glivec and hopefully you'll

by Wellfi (Jul 9)

Thanks everyone for your replies. Have taken some time to read through some CML blogs and am feeling more positive. Sounds like life goes on as long as the medication is working.
It has just broken

by RodM (Jul 9)

Hi
I can only echo what everyone else has said on this forum, but in my opinion, if I was forced somehow to pick one cancer to have out of all the different forms of it, this is the one I'd pick -

by cmlblogger (Jul 9)

On the subject of Private vs NHS - I too am covered by a very generous company private policy, but I decided to go with the NHS as was referred to the Hammersmith where I think a lot of the
Category: Uncategorised

Replies: 23

Last updated: 10 July 2014
Jcab on 4 July 2014

Category: Uncategorised

Replies: 15

Last updated: 11 August 2014

Fathering a child on Imatinib
by Jcab (Aug 11)

Hi all, I just wanted to say thanks again for all the information sent over. We finally saw our GP this morning, and shes writing a letter to Prof Apperley to request a referral. Fingers crossed

by sandy craine (Jul 24)

Hi David... I suffer from these too. You might find the following article interesting- I have not yet had time to read but it might have some useful info. Mine do improve when I consistently use an

by David Fitz (Jul 24)

Yeah, I have loads of floaters too. I try to count them, but as soon as you start to they move so it makes it impossible!! I reckon it's around the 15-20 mark. It's worst in the summer as they show

by Jcab (Jul 23)

His sight is ok. All of the haemorrhages repaired leaving no lasting damage. I'd say the big thing is the anxiety it brought with his eyes. He has floaters (which most people do even me) and he now
Category: Uncategorised

Replies: 15

Last updated: 11 August 2014
shafagh12 on 30 June 2014

Category: Uncategorised

Replies: 3

Last updated: 1 July 2014

PCR results after 1 year
by sandy craine (Jul 1)

You should be celebrating your mothers 2 PCR results. The first - 6 months ago- (so only 4 months after she started therapy) is an optimal results to say the least! 0.002% on the IS means her level

by chrissie (Jun 30)

Hi Shafagh
A wonderful result for your mother again. She has reacted very well to imatinib to achieve such good results so quickly and to hold it. The extra .00099 don't mean anything as far as I

by David Fitz (Jun 30)

Hi,
That's an awesome result!
Major Molecular Response, MMR or MR3, is usually considered the "safe haven" level, when it comes to PCR tests. MMR is 0.1%. Once a patient is below (and maintains

by shafagh12 (Jun 30)

Hi everybody.

My mother was diagnosed with CML about 10 months Ago and she is on imatinib 400 and today we got her PCR examination results and it was 0.00299 but the previous one (about 6
Category: Uncategorised

Replies: 3

Last updated: 1 July 2014
tartancaddy on 30 June 2014

Category: Uncategorised

Replies: 1

Last updated: 1 July 2014

Hypokalemia
by sandy craine (Jul 1)

Hi Gary,
Hypomagnesemia can cause hypokalemia. Magnesium is required for adequate processing of potassium. It is hard to assess whether you are deficient in magnesium as only about 1% is in the

by tartancaddy (Jun 30)

Hi Guys
Anyone else have experience of borderline levels of potassium in their blood? Just had a blood test and this has been noticed. Just had a quick google to see what it means and Hypokalemia
Category: Uncategorised

Replies: 1

Last updated: 1 July 2014
sandy craine on 29 April 2014

Category: Uncategorised

Replies: 18

Last updated: 16 July 2014

Updates on DESTINY trial- Thomas
by sandy craine (Jul 16)

Hi David,
It's great that your side effects have 'pretty much disappeared' on the reduced dose of imatinib. My fingers are crossed too in the hope that the next PCR shows that your BCR-ABL1

by david_a (Jul 15)

Hi all, 2 weeks in and my side effects have pretty much disappeared on half dose of glivec. I feel much better mentally, more alert, no brain fog. No fatigue. I thought my side effects were pretty

by sandy craine (Jul 3)

Wishing you the best of luck- hopefully you will maintain you MR on the reduced dose without problems. Thanks for sharing your experience here, I look forward to hearing how you get on.
Sandy

by david_a (Jul 2)

Hi all, this is day 1 for me on the DESTINY trial. My dose of glivec has reduced from 400mg to 200mg. I'll keep you all updated on progress and side effect reductions.
Category: Uncategorised

Replies: 18

Last updated: 16 July 2014
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