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Des on 7 February 2008

Category: Uncategorised

Replies: 2

Last updated: 7 February 2008

radioactive isotopes & CML
by leslie chambers (Feb 7)

Hi Des,

I was at HH on Monday for a total body PET scan, and was injected with a radioactive isotope mixed with a glucose carrier. I asked my doctor all about it and was assured it was safe,

by sandy craine (Feb 7)

hi Des,

yes i agree that you should question methods. when i was having my 'workup' to my transplant i had to have some sort of test which used radioactive isotopes. i think it was called a

by Des (Feb 7)

After much spine, hip and leg pain,totally dissimilar to that caused by the Glivec, I am to have a bone scan. I have been told that an iv injection of radioactive isotopes will be used to
Category: Uncategorised

Replies: 2

Last updated: 7 February 2008
Fenton on 2 February 2008

Category: Uncategorised

Replies: 9

Last updated: 7 February 2008

Can someone explain log reduction to me?
by julie hubbard (Feb 7)

Hi sandy thanks for telling me about the childrens site. i am registered on that. i will try jerrys site later. i don't get much chance to get to the site very often due to being a single parent,

by sandy craine (Feb 6)

hi Julie,

have you joined the 'children with CMl' site ...see direct link on left of page.... which Jayne set up last year? the site has a forum for parents/carers and also one just for the

by sandy craine (Feb 5)

Dear Julie,

first let me say that it is great news that your son has achieved molecular remission.

as for your question, as long as he can tolerate the adult dose (paedratric doses tend

by zaviemiller (Feb 5)

Hi Julie,
Could you please write me at zmiller@sympatico.ca
Zavie
Category: Uncategorised

Replies: 9

Last updated: 7 February 2008
Fenton on 2 February 2008

Category: Uncategorised

Replies: 9

Last updated: 27 February 2008

New to this site
by Fenton (Feb 27)

Welcome to the CML site.

I am so glad you at last have a diagnosis after all those months of feeling unwell and that you have been able to start on Glivec and so far have not had any great ill

by Fenton (Feb 27)

After diagnosis, it took me 9 months to read stuff about CML on the internet site. I just read through my BACUP book and got on with it. I did feel rather alone because its not a very common

by sandy craine (Feb 19)

hi Fernando and welcome to this forum. if you need any advice or support please do not hesitate to ask here. there is great hope for people diagnosed with CML. read as much as you can and you will

by fselman (Feb 18)

I am a chilean astronomer working at an European Observatory based in Chile. I was diagnosed with CML 28 Jan 2008, just two and half months before my 50th birthday. Previous to this I had been in
Category: Uncategorised

Replies: 9

Last updated: 27 February 2008
Pennie on 2 February 2008

Category: Uncategorised

Replies: 1

Last updated: 3 February 2008

Nilotinib/AMN107 - enact trial
by sandy craine (Feb 3)

hi pennie,

thanks for sharing your experience of nilotinib. we have not had many people on this forum who have been willing to share their experience of this alternative to Glivec.

i am

by Pennie (Feb 2)

I have started on this trial(in Jan)due to Glivec intolerance. Dose 8oomg,400mg twice a day.
After fighting for Glivec in 2001 - 2002, alongside so many others who are early members of this forum, I
Category: Uncategorised

Replies: 1

Last updated: 3 February 2008
sandy craine on 29 January 2008

Category: Uncategorised

Replies: 3

Last updated: 10 July 2012

for Tamaguci - Itchy eyes- Homeopathy-
by shantelle1109 (Jul 10)

Homeopathic remedies are safe to use, and yes i have used them during and after my therapy with Glivec to counter the side effects and also during my stem cell transplant to offset the effects of

by sandy craine (Feb 25)

hi Fernando,

yes, taking herbal supplement of St. John's Wort is contraindicated with taking Glivec.... and maybe other TKI's like Sprycel (dasatinib) and Tasigna (nilotinib)?
however... using

by fselman (Feb 18)

I am no expert on this (I was diagnosed with CML only a month ago) so I will throw this comment so somebody else might advice. It is my understanding that Hypericum (St John's Wort) is one of the

by sandy craine (Jan 29)

Hi Tamaguci,to answer your question from the discussion thread on the side effect of 'sore eyes' further down the page....
Homeopathic remedies are safe to use, and yes i have used them during and
Category: Uncategorised

Replies: 3

Last updated: 10 July 2012
Dennis on 24 January 2008

Category: Uncategorised

Replies: 11

Last updated: 31 January 2008

MP's reply to Dasatinib
by sandy craine (Jan 31)

Hi Paul, yes i do agree with you about the effects of devolution starting to be felt. i am hopeful that NICE will give a positive appraisal of both dasatinib and nilotinib, which will at least

by Paul Cooke (Jan 31)

Hi Sandy,
Unfortunately, patients are getting caught between the politicians, NICE, and NHS management.

In addition, the whole issue of devolution is beginning to have an impact. I have heard

by sandy craine (Jan 31)

hi Paul, thanks very much for you clarification and the breakdown of the costs of dasatinib compared to imatinib. it is very helpful to see those figures in print and as you say it really does

by Paul Cooke (Jan 30)

I note the comments about the discrepancies within the home countries of the UK - this is something we'll all have to learn to 'live with' as devolution really begins to hit, and have an impact upon
Category: Uncategorised

Replies: 11

Last updated: 31 January 2008
mariansy on 22 January 2008

Category: Uncategorised

Replies: 4

Last updated: 23 January 2008

PCR up
by zaviemiller (Jan 23)

YAHOOO!!! YIPPEEE!!!

Number 1145 in the Zero Club

Zavie
Reaching CCR gets you into the Zero Club
Zavie Miller (age 69)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd

by zaviemiller (Jan 22)

Hi Marian,
Could you send me you email address?
Zavie
zmiller@sympatico.ca
Zavie Miller (age 68)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec since MAR/27/01 (400

by mariansy (Jan 22)

Thanks Sandy
I really appreciate the reassurance. I do however know that King's want to increase my dose as I haven't got down to a 0.0?? in two years. Perhaps they'll just opt for 600 instead - at

by sandy craine (Jan 22)

Hi Marian,

I am not sure if you should panic just yet. the rise in your pcr is not that much and may not be significant. you should also wait until you get another result to compare as it may
Category: Uncategorised

Replies: 4

Last updated: 23 January 2008
Des on 21 January 2008

Category: Uncategorised

Replies: 12

Last updated: 2 February 2008

Winter chills again!/Pins and Needles
by Mo (Feb 2)

Maureen
Glad I am not the only one,I am so cold right inside me heating high two jumpers, today added my thermal vest and yes still feeling cold.other wise all my counts are fine so a small price

by Fenton (Feb 2)

Hello Diana
I am sitting here replying to you with full central heating on and still freezing inside my fleece. Up until CML and Glivec I was a real warm person.

The cold seems to be right

by Lorraine Rollo (Feb 2)

Des I was very interested to hear about your disc problems. I have been on Glivec for the past eight years and have had niggling back problems for the past five. However last august I had a

by leslie chambers (Jan 29)

Hi Des,

just a quick follow up,a couple of months ago we bought a memory foam topper for our bed mattress,I havent slept as warm for years, it's wonderful, much warmer than the mattress on its
Category: Uncategorised

Replies: 12

Last updated: 2 February 2008
nosila on 19 January 2008

Category: Uncategorised

Replies: 7

Last updated: 5 February 2008

Ayrshire PCR s
by sandy craine (Feb 5)

Hi Chris,

sorry i missed this message...... congratulations on getting access to one of the best haematologists working in CML today. i am so glad you managed to do this and can understand

by chris murphy (Jan 31)

Hi Sandy

I have managed to get Brian transferred to Prof. Holyoake in Glasgow from Ayr. It will take approx 4 weeks to sort out, but this is all such a relief. I can now feel that all that

by sandy craine (Jan 30)

dear Chris, i understand why you would feel defeated and isolated. CML is quite a rare disease and if you not treated at one of the major centres then there is little chance of meeting others with

by chris murphy (Jan 26)

hi Sandy

Thanks very much, I tend to feel very defeated and isolated fighting Brian's battles - he finds it very difficult and I am desperate to get the right help and support, it doesn't seem
Category: Uncategorised

Replies: 7

Last updated: 5 February 2008
Dennis on 18 January 2008

Category: Uncategorised

Replies: 8

Last updated: 21 January 2008

Coming off Glivec
by Dennis (Jan 21)

Oh and David - I'll be very interested to know how you and Val go on. Thanks.

by Dennis (Jan 21)

To everyone who has responded, thanks - you have ALL made some very interesting and useful points.

I had better start by explaining as briefly as possible, my position. I was diagnosed 14

by sandy craine (Jan 21)

hi Dennis,

as you can see from the replies to your post, this is a contentious issue and how patients experience side effects, as far as i can see, is the main reason for doctors to consider a

by David (Jan 21)

Dennis - this dose reduction idea is a bit of a conundrum for us all to understand, particularly given the minimum stated clinically effective dose.
We saw David Morin at the Hammersmith just before
Category: Uncategorised

Replies: 8

Last updated: 21 January 2008
David on 13 January 2008

Category: Uncategorised

Replies: 2

Last updated: 19 January 2008

Thank you for Fund Raising
by Steven D (Jan 19)

I would like to thank Val very much for taking a role in the fund raising at the Stowe Golf Club.
Many people do not realise how much time and effort goes into organizing such events and for that

by sandy craine (Jan 16)

Hello David,

thank you for putting the link on this forum. As you know I have written to the Ladies Section of the Stowe Golf Club to thank them for their donation.

Best wishes to both

by David (Jan 13)

This post is to say a huge thank you to the Ladies of Stowe Golf Club, where my wife, Val, is a member, for their fund raising activities in 2007 on behalf of CML Support Group. They raised £1,550
Category: Uncategorised

Replies: 2

Last updated: 19 January 2008
johnh on 13 January 2008

Category: Uncategorised

Replies: 2

Last updated: 16 January 2008

Dasatinib & Nilotinib Approval - MP Response
by sandy craine (Jan 16)

Hi John and Dennis,
I too have had replies to my letters. One from a civil servant at the DH which told me very little that I didn't already know, and one from my local MP who kindly included the

by Dennis (Jan 14)

Thanks for posting that. I haven't recieved a reply yet, but no doubt it will be exactly the same as yours.

The question that needs asking after that response is: well what are you doing to

by johnh (Jan 13)

I have now received an answer to my letter to my MP requesting the Government to accelerate NICE approval for Dasatinib and Nilotinib.
The reply from the Minister, Dawn Primarolo MP, is quite long
Category: Uncategorised

Replies: 2

Last updated: 16 January 2008
Janet on 13 January 2008

Category: Uncategorised

Replies: 4

Last updated: 15 January 2008

Travel Insurance 2008
by Janet (Jan 15)

Dear Phil, John and David
Thanks very much for your very helpful advice. Following a call this evening to Age Concern, we now have a family annual world-wide [incl Canada and the USA] travel

by David (Jan 13)

I was dreading the renewal last week of our policy but it proved to be easiy.
I have just renewed an annual policy with worlwide cover, including USA, with Age Concern (underwritten by Fortis) for

by johnh (Jan 13)

Aged 68 with CML, I spent about 18 months trying to get travel insurance at a reasonable price. I eventually changed my home insurance to Norwich Union and they included worldwide, multi trip cover

by Phil Poole (Jan 13)

Janet & others,
I have been using J.D.Consultants, 44, High Street, Farnborough, Kent, for the past 3 years. Telephone 01689 859102, 850333, 856551, 851145, or 856984. I have just received my
Category: Uncategorised

Replies: 4

Last updated: 15 January 2008
Barbs on 11 January 2008

Category: Uncategorised

Replies: 5

Last updated: 20 January 2008

This Year's CML Meeting
by paul.ridley158 (Jan 20)

Paul Ridley
Just wanted to endorse comments about Edinburgh seminar - really useful and great to meet new people and share experiences. Also to repeat our gratitude to Elizabeth and Sandy for their

by Carol (Jan 13)

I would like to endorse David's comments about Elizabeth.
She was a great support to both Steven & I when Steven was Dx with CML her knowledge kindness the fantastic way she is with people

by David (Jan 13)

Barbara
I imagine the reason that Elizabeth no longer has access to the Email addresses is because she is no longer a Trustee of the CML Support Group Charity. As far as I know, the site has not

by Barbs (Jan 12)

Good to hear from you!

I was beginning to get worried.

The kids are fine & I'm still PCR-U (just 10% T8 now).

I'm sorry to hear that you've been under a lot of stress recently
Category: Uncategorised

Replies: 5

Last updated: 20 January 2008
Belinda Whitting on 10 January 2008

Category: Uncategorised

Replies: 4

Last updated: 22 January 2008

tiredness
by Belinda Whitting (Jan 22)

thankyou everyone who answered my questions about tiredness etc. i hope that you are all keeping well & thankyou once again, i dont know what i would do sometimes without this web site to tune

by sandy craine (Jan 11)

hi Belinda,

yes tiredness is a side effect of Glivec therapy... Glivec can affect haemaglobin levels and mine was never higher than 10 when i was taking Glivec. this is really a sub-optimal

by kathy (Jan 11)

hi belinda,i have a problem with tiredness,some days i cant do anything ,i mentioned this to my consultant and he said its a common side effect of the medication,take care,kathy

by kestrel (Jan 10)

Hi Belinda,

So sorry to hear that your husband has some side-effects. I was going to say that I couldnt comment on the yellow tinge and insomnia, but have just looked at the leaflet in the
Category: Uncategorised

Replies: 4

Last updated: 22 January 2008
derren on 9 January 2008

Category: Uncategorised

Replies: 2

Last updated: 17 January 2008

Life Insurance
by skiinglaketahoe (Jan 17)

Hi
My consultant told me that once diagnosed with CML that there was no chance of getting any more life insurance. It will be interesting to hear if you manage to find out differently.
regards
Susan

by cmlblogger (Jan 9)

after being dx'd in december 06 I got a critical illness payout with the provider where I work (Candia Life ISTR), every year we have a flex benefits scheme for everything from life assurance, to

by derren (Jan 9)

Hi Every one
Just wondered if anyone out there could give me some advice. I was diagnosed in August 2007 and it was the spur that made me and the wife get that 'house of our dreams' so I will be
Category: Uncategorised

Replies: 2

Last updated: 17 January 2008
mcgiv on 8 January 2008

Category: Uncategorised

Replies: 3

Last updated: 11 January 2008

Leg swelling
by Debbie (Jan 11)

Hi,

I also suffered from a swollen lower leg, ankle and foot. Its funny how it only happened with one leg, never had the problem with other leg. The problem first started when I was put on

by mcgiv (Jan 9)

Thanks Sandy,will pass on you comments

by sandy craine (Jan 8)

hi,

it is difficult to advise you as any sort of swelling which cannot be easily explained should really be investigated by a doctor. i am sure your son-in-laws doctor would be willing to talk

by mcgiv (Jan 8)

My son-in-law being treated with Glivec for CML has developed swelling in one leg. Doctor recommened course of steroids. What would cause this swelling and would steroids be the answer
Category: Uncategorised

Replies: 3

Last updated: 11 January 2008
hcy0da on 7 January 2008

Category: Uncategorised

Replies: 4

Last updated: 9 January 2008

Mouth Bleeds
by Dennis (Jan 9)

I too get blisters in the roof of my mouth that very quickly bleed. I thought that it had to do with the thinning of the skin,caused by Glivec.

by Des (Jan 8)

I too get blood blisters in my mouth, again after eating something salty or rough, like crisps, French Bread etc. Some of them are pretty big, ulcers too are far more prevalent.
As I never had them

by sandy craine (Jan 8)

hi,

mouth ulcers can respond to increased vitamin C and/or a general vitamin and mineral supplement. you may be a little 'run down' if you have suffered from any recent colds or flu.

as

by Debbie (Jan 8)

Hi,

I get what I would call blood blisters. They usually appear after if have bitten the inside of my mouth or after I have eaten something hard or sharp. They go away within a day or
Category: Uncategorised

Replies: 4

Last updated: 9 January 2008
kestrel on 6 January 2008

Category: Uncategorised

Replies: 6

Last updated: 13 January 2008

Dasatinib trials
by kestrel (Jan 13)

Thank you to all who replied - some food for thought there. pcrs have been bobbling around - as low as 0.39 at one point, but now up to 0.7 and awaiting another result in 1/2 weeks. Psychological

by keith Pratt (Jan 12)

Hi Kestrel

Same happened to me, have been on Dasatinib for just over a year, but only on a low dose due to platlets that have had too much punishment. I plateaued at about 80%-ve with Glivec,

by Michael Behn (Jan 8)

M.P.Behn
Hi Kestrel and Rachel
My name is Teresa and my husband Mike was diagnosed with CML in Feb 07. He began his treatment with Glivec but has now built up a resistance to it and is now in the

by sandy craine (Jan 8)

hi Kestral,

i am sorry to hear that Rio is suffering more side effects from the increase Glivec. his pcr will probably take a little longer to show any effect from the larger dose so do not
Category: Uncategorised

Replies: 6

Last updated: 13 January 2008
garym161 on 1 January 2008

Category: Uncategorised

Replies: 14

Last updated: 14 January 2008

Just diagnosed
by carmeplas (Jan 14)

Hi Gary,
sorry to hear these news. David (my husband) is 34 now, he was diagnosed at JUne 2007. Doctor discover CML just by a routine lab test, as he had no symptoms except for night sweatings.

by Hannah Bracegirdle (Jan 14)

Hannah Bracegirdle
Hi Gary, I was diagnosed in Oct 2007, I found out after having a routine blood test because Im pregnant. So it was a massive shock. My wbc was 116. I didnt really and still

by jaynelister (Jan 7)

Hi Garry,

Im sorry to hear of your diagnosis but please feel some comfort that you have found the right place for information and support.
My Son was diagnosed at the age of 15 with CML and I

by RACHEL HALSALL (Jan 5)

Hi Gary,

Just read your earlier post and noted that you are being treated at Blackburn. We live in Bolton, just down the road and my Gary was being treated at Bolton. Currently he is being
Category: Uncategorised

Replies: 14

Last updated: 14 January 2008