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sandy craine on 18 September 2009

Category: Uncategorised

Replies: 1

Last updated: 20 September 2009

Lond term Survivorship - roundtable discussion 25/09/09
by Bee (Sep 20)

Ted might be interested (diagnosed June 2001 if that is considered long term?), but we don't live in London. Can you e-mail us please Sandy?

Bee

by sandy craine (Sep 18)

Due to cancellations there are a few places left on the upcoming roundtable discussion on 'long term survivorship with CML' which will take place in central London on Friday 25th September.
Category: Uncategorised

Replies: 1

Last updated: 20 September 2009
Ali Loram on 17 September 2009

Category: Uncategorised

Replies: 6

Last updated: 27 September 2009

starting a support group
by kestrel (Sep 27)

I remember now - I'm the member with the son with CML who lives near Bristol, who you referred to on another thread! It comes back to me that we have had this conversation before..... If you do

by Ali Loram (Sep 23)

Hi Kestrel, I live not far from Exeter, Devon. You?

Ali

by kestrel (Sep 23)

Hi Ali

What part of SW are you please?

kestrel

by Ali Loram (Sep 18)

Sandy, sorry, I have put your contact details in a "safe Place" & now cant find them! Please could I have them agin or feel free to email me, ali@loram2028.fsnet.co.uk. Thanks.

Ali
Category: Uncategorised

Replies: 6

Last updated: 27 September 2009
sue on 16 September 2009

Category: Uncategorised

Replies: 5

Last updated: 7 October 2009

cml seminar in nottingham
by Bhiru (Oct 7)

Hello All,
I've just boooked a hotel for the seminar and thought I would share my findings in case others are still looking for cheaper alternatives to the "delegate discount" that Crowne Plaza are

by Bee (Sep 20)

Hi All
I've not posted on the site for a long, long time but often pop in and have a look. Nice to see some familar names still around. We have also applied to come to the Nottingham Seminar as it's

by sandy craine (Sep 18)

Dear Bob,

I am sure that your registration will ensure you a place. These events are usually organised by the nurses working at the centres concerned rather than professional events

by Cathy Thomas (Sep 17)

Hi, I am new to this group and will introduce myself in a separate posting but I thought you might like to know what I've found out about booking the Crowne Plaza for the seminar. Firstly, the
Category: Uncategorised

Replies: 5

Last updated: 7 October 2009
johnh on 14 September 2009

Category: Uncategorised

Replies: 3

Last updated: 16 September 2009

Vitamin B12 Deficiency
by mariansy (Sep 16)

I'm glad it went well. Mine were done in the afternoon, it was term time so mornings were out. I suppose this might have made a difference.
Must admit I too love having an excuse to eat liver,

by johnh (Sep 15)

Hi Marian,
Thanks for your response. I am sorry to hear that you reacted badly to the B12 injections. I had my first one this morning, fortunately before I saw your post, and am pleased to say that

by mariansy (Sep 15)

Hi John
I had a series of B12 shots due to low counts. Although I wasn't suffering from gastric disorders or fatigue. They were truly horrid, I'm afraid, it felt like a nasty sting and I was

by johnh (Sep 14)

I recently had a blood test because of persistent stomach disorders associated with loss of energy. I have suffered this to a slight extent over the four years I have been taking Glivec but, in the
Category: Uncategorised

Replies: 3

Last updated: 16 September 2009
stella on 13 September 2009

Category: Uncategorised

Replies: 4

Last updated: 23 September 2009

New member
by stella (Sep 23)

Many thanks for those comments. I find looking at this website bucks me up when I am feeling sorry for myself! Everyone is so kind and it is a good source of info. I will think about coming to the

by sandy craine (Sep 18)

Dear Stella,

Welcome to this forum. I would also like to add that I am so sorry you had a miscarriage. I understand from personal experience how that feels.
I am sure as the months go on and

by Bram (Sep 14)

Hi Stella, My heart felt sympathy goes out to you, your husband and your family. That really is sad news.

I, and everyone else on this great site know only too well that very few words can

by kathy (Sep 13)

Hi stella,sorry to hear about the miscarriage and of course the cml,i was 26 when i was dx and its now 6 years on,things are hard to take in at first but with time things get easier,email me anytime
Category: Uncategorised

Replies: 4

Last updated: 23 September 2009
Jo on 12 September 2009

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Replies: 2

Last updated: 13 September 2009

Cord Blood Transplant
by michael (Sep 13)

Hi Jo

Wow you must be one of the first to be in the Kingscord scheme,great news on your progress I to would be interested to hear more.Professor Mufti and his team have come a long way in

by sandy craine (Sep 13)

Dear Jo,

thanks for updating here on your progress. It is great news that your transplant using cord blood as a source of donor cells has been successful and the disease is now at very low

by Jo (Sep 12)

It has been a long time since I have visited this site. I wanted to write to say thank you - I found the forum a very useful source of information during my treatment. I refered to the forum for
Category: Uncategorised

Replies: 2

Last updated: 13 September 2009
Jeanette Douglas on 8 September 2009

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Replies: 2

Last updated: 9 September 2009

Great results (I think!)
by zaviemiller (Sep 9)

Y A H O O O !!! Y I P P E E E !!!

Number 1271 in the Zero Club

Zavie
Jeanette, could you please send me your email address. I have a couple of questions for you.
Thanks
Zavie Miller (

by sandy craine (Sep 9)

Dear Jeanette,

This is such a good result and well in line with the current expectations for a good response.

Side effects do diminish with time for most people and I hope you are not

by Jeanette Douglas (Sep 8)

Hi to All

I haven't posted anything for ages but I have been reading all your topics and have really enjoyed the discussions and reading some great test results. I have just received my
Category: Uncategorised

Replies: 2

Last updated: 9 September 2009
chris murphy on 8 September 2009

Category: Uncategorised

Replies: 2

Last updated: 9 September 2009

Dasatanib - stiffness
by zaviemiller (Sep 9)

Y A H O O O !!! Y I P P E E E !!!
Number 1272 in the Zero Club
Zavie
Chris, all he needs is to be at CCR to get into the Zero Club.
Send me your email address please. I have some questions for you

by sandy craine (Sep 9)

dear Chris,

I would recommend some sort of complimentary therapy like reflexology or even acupuncture... see my note to Pat about this on another thread further down this page.... my friend

by chris murphy (Sep 8)

Hi,

We haven't been in touch recently as everything is going according to plan.
My husband had had CML for three years and has beeen on Dasatanib for a year. His main side effect has been
Category: Uncategorised

Replies: 2

Last updated: 9 September 2009
fehr on 7 September 2009

Category: Uncategorised

Replies: 4

Last updated: 10 September 2009

Short break in Glivec
by fehr (Sep 10)

Thanks, Sandy, Sue, Zavie, for those comments. I feel reassured. I am due another PCR test result shortly, and I guess that should confirm it.

Sue, I understand just how you felt - I am

by zaviemiller (Sep 9)

Hi John,
Your doctor is being extra cautious. At the level of remission that you are at now you could take a months break without any ill effects.
It takes one week before the Gleevec is cleared

by sue (Sep 8)

susan dickerson

Hi John I have had a short break in gleevic earlier this year when I went into hospital. I had an op which meant could not stomach the gleevic after starving pre op day before

by sandy craine (Sep 8)

Dear John, I am sorry to hear you have had to have surgery and hope all is now OK.

regarding your very short break from Glivec: I am sure your levels would not have been affected too much by
Category: Uncategorised

Replies: 4

Last updated: 10 September 2009
chrissbb on 7 September 2009

Category: Uncategorised

Replies: 1

Last updated: 9 September 2009

Low platlets
by Dennis (Sep 9)

I've posted Chris.
Hope I haven't done more harm than good.

by chrissbb (Sep 7)

Hi One of our members in our local cml support group has asked a question about been taken off glivec. It involves very low platlets. If anyone has any helpfull advice could you please post her a
Category: Uncategorised

Replies: 1

Last updated: 9 September 2009
rebecca stevens on 3 September 2009

Category: Uncategorised

Replies: 5

Last updated: 4 September 2009

sacked for having CML
by rebecca stevens (Sep 4)

Thank you all so much for your advice. Today Steve has been in touch with the equality and human rights commission, who have said that this type of behaviour is classified as direct discrimination

by valandi (Sep 4)

Hi Rebecca,
Under the Disability Discrimination Act, it is unlawful for an employer to discriminate against a person because of their disability. Everyone with cancer is classed as disabled under

by kestrel (Sep 3)

Hi Rebecca,

First, just to introduce myself, I have a 15 year old with CML who had a bone marrow transplant last year and although I haven't posted for a while, I always keep an eye on this

by michael (Sep 3)

CML is covered under the disability at work act,so I would contact a solicitor that deals with work related matters.Or ring the Acas helpline 08457 47 47 47 decent free advice from the uk goverment
Category: Uncategorised

Replies: 5

Last updated: 4 September 2009
Nansubuga on 2 September 2009

Category: Uncategorised

Replies: 1

Last updated: 6 September 2009

pregnancy
by cassidy62 (Sep 6)

hi Nansubuga, dont know if you read my post from June but i have just given birth to a beautiful baby girl in June, she is 10wks old and so far everything is good. I was diagnosed in October 2007

by Nansubuga (Sep 2)

i want someone to give me hope of having a healthy brother or sister for my little son. I believe there is hope somewhere though unpublished. I am so stressed about it but at the same time not
Category: Uncategorised

Replies: 1

Last updated: 6 September 2009
Comkick1 on 31 August 2009

Category: Uncategorised

Replies: 2

Last updated: 1 September 2009

Glivec Failure
by fish4 (Sep 1)

Hi Mark
My experience was not unsimelar to yours in that Glivec worked wonderfully for the 1st 20 months after DX in January 2006 that my PCR went from just under 2% up to 81% I am now on Tisiga

by vickiep (Aug 31)

Couldn't have been more delighted when they told me that Glivec just wasn't working for me. At 56 I had spiralled into old-age. Am now on Dasantinib and feel very much better for it! Having a bit of

by Comkick1 (Aug 31)

Hi all,
I was DX in October 2008 with Chronic Phase CML, I had a marvelous response coming from 113.553% baseline to 0.468% which was my result in April 2009. However in my July PCR it came back as
Category: Uncategorised

Replies: 2

Last updated: 1 September 2009
pat preston on 30 August 2009

Category: Uncategorised

Replies: 4

Last updated: 15 October 2009

Tasigna for CML and bits and pieces from an old timer.
by Apryl (Oct 15)

I changed over to Tasigna a few months ago due to adverse side affects of Glivec. At first I thought if might have been a mistake to change as I felt like I had been under a bus, my bones ached so

by sandy craine (Sep 9)

Dear Pat,

good to see your post and hear also that you are still 'fighting' in-spite of all the challenges you have had since losing your husband. I am so sorry to hear your grand-daughter is

by valandi (Aug 31)

Pat,
great to here from you again, it seems so long since we last were in touch; looking back I can see it was well over two years, but the advice you gave me when Val was diagnosed was so useful at

by Pennie (Aug 30)

Dear Pat

So great to hear that you are still doing well on Gleevec, 0 PCR - wow, the goal we all aspire to.
I am so sorry to hear about the C diff- not something you needed to deal with. Hope
Category: Uncategorised

Replies: 4

Last updated: 15 October 2009
lynnsch on 22 August 2009

Category: Uncategorised

Replies: 2

Last updated: 10 September 2009

Adoption
by lynnsch (Sep 10)

Hi Sandy,
Thats very helpful thank you, I'll contact the BAAF.
Many thanks

Lynn

by sandy craine (Sep 9)

Dear Lynn,

I am not sure how having CML would affect your chances. I suggest you contact your local authority ask what there attitude is. The 'rules' seem to differ depending on the region you

by lynnsch (Aug 22)

Hi everyone,
I was wondering if anyone with CML had looked into adoption in England? I have heard that cancer suffers have to have had the all clear which I would imagine would count me out? Just
Category: Uncategorised

Replies: 2

Last updated: 10 September 2009
sue on 21 August 2009

Category: Uncategorised

Replies: 2

Last updated: 28 August 2009

advise please on bone scans
by leslie chambers (Aug 28)

Hi Sue,I have had several MRI scans, and a PET scan which involved a radioactive injection with no ill effects at all. I am due to have a "special chromium scan" whatever that is, at the HH,they do'

by Des (Aug 23)

I have a slipped disc from 2 years ago and have undergone x-rays,bone scans, MIRs, also bone density tests for osteoporosis involving nuclear medicine, I was assured they were all safe. If you are

by sue (Aug 21)

Can anyone tell me if they have had a bone scan and if so how was it and how safe is it to have one with cml. I have always suffered from bone/joint/muscle and cramps since starting on gleevic 6
Category: Uncategorised

Replies: 2

Last updated: 28 August 2009
Vangogh on 19 August 2009

Category: Uncategorised

Replies: 2

Last updated: 20 August 2009

BCR/ABL Test Results
by Andy Parkin (Aug 20)

Well done Tony. I know from experience what a great feeling it is when the PCR result comes back and it's trending in right direction!! Best wishes for continuing drop toward 3 log reduction !!

by sandy craine (Aug 20)

Dear Tony,

Many congratulations on a really good response.

I am sure you will continue with this downward trend.
Best wishes,

Sandy

by Vangogh (Aug 19)

Hi Everybody
Just had my last test results. Dx June 2008 and now for the first time below 1% (0.287%). Feeling pretty pleased.
Best Regards

Tony
Category: Uncategorised

Replies: 2

Last updated: 20 August 2009
Des on 18 August 2009

Category: Uncategorised

Replies: 5

Last updated: 3 November 2009

Still undetectable
by Basil from RSA (Nov 3)

Hi all,

I would like to share my good news with the forum, Des and those who follow this thread.
I received the results of my last PCR today and the results are fantastic.

BCR-ABL 9-22

by Basil from RSA (Sep 1)

Hi all,
This is just a short note to let you know the results of my last PCR test done on 20/8/2009.

The BCR/ABL ratio was 0.00083.

This is obviously not an "Undetectable" result and

by sandy craine (Aug 20)

Hello Des, I have been away for a few days so have just caught up with your continuing good news.
I remember reading that patients from the STIM trial who maintained PCRU status for >6 months

by Basil from RSA (Aug 19)

Hi Des,

Great news from your side. My best wishes for ypur great results.
Well I saw my Haematologist today and we did the first tests since comming off Gleevec (400mg per day) at the
Category: Uncategorised

Replies: 5

Last updated: 3 November 2009
sandy craine on 14 August 2009

Category: Uncategorised

Replies: 4

Last updated: 15 October 2009

CML Patient Seminar 2009-
by Apryl (Oct 15)

Hi Sandy
Are you planning on having the usual patient get to gether this year, cant see any details of it on the site. Can you let me know if you are, if we have to register for it and how much it

by sandy craine (Sep 8)

Hi Janet,
Sorry but I am not aware of the doctors that are due to speak at the Seminar in Nottingham. I have not been involved in the organisation of the day and was only provided with the details

by Steven D (Aug 24)

Hi.
It seems the phone number for the Crowne Plaza has recently changed to

0871 9429161
Steven

by Janet (Aug 24)

Dear Sandy and Steven
This looks a very interesting programme. Thank you for your input in organising the day.
Do we know yet which doctors are speaking?
Regards, Janet
Category: Uncategorised

Replies: 4

Last updated: 15 October 2009
jjhollis100 on 12 August 2009

Category: Uncategorised

Replies: 9

Last updated: 20 August 2009

Talk of a BMT
by Andy Parkin (Aug 20)

If it is any help trying to get your consultant to try the plasma level testing then the following may help.

I was diagnosed Spring 07 with CML and on 400mgs Imatinib from april '07. By 6

by jjhollis100 (Aug 18)

Thanks for all the information.
yes i am in CCR and my PCR's for the last couple of years are always around 2%.
I shall go back to hospital in 5 weeks armed with this new info and advice and see

by zaviemiller (Aug 17)

Hi,
I am puzzled at your doctor's comment that you should start thinking about a transplant.
He is the doctor and he should be looking at all the alternatives for you. What about the many drugs

by michael (Aug 14)

Nilotnib was discounted for me because I am Diabetic,without a full history its hard to decide treatment options,but dont let it put you off asking why your options are limited.

Mike
Category: Uncategorised

Replies: 9

Last updated: 20 August 2009