CML Horizons 2024 Videos and Presentations

iCMLf Publicaions.

iCMLf Forum 2022: The Next Big Challenges in CML? Webstreams

iCMLf publications: A selection of interesting articles on CML from peer-reviewed journals

You are here

Forum

Linda Corcoran on 9 May 2007

Category: Uncategorised

Replies: 16

Last updated: 14 August 2014

Glivec V Mini Transplant
by darley (Aug 14)

Believe me if a mini transplant is even a tenth as bad as a MUD transplant, it's going to make being on glivec seem like a walk in the park.
My transplant was 19 years ago. I didn't have the option

by Dom (Aug 13)

A big thanks to Chris and Sandy for keeping me right. I know we all have a great deal to be thankful for, and I know that over time I will re-adjust to the new reality. It has been really positive

by sandy craine (Aug 13)

Hi Dom and welcome,
Chris has more or less spelled it out very clearly... in the era of 5 TKis, transplantation for CML in chronic phase is indeed a last resort.
Being fit and healthy may help you '

by cdw5000 (Aug 13)

Hello Dom,
I'll offer some initial advice and I'm sure Sandy will be along to give her expert words of wisdom.
Unless you have a serious problem responding to the medication(s) then there is no
Category: Uncategorised

Replies: 16

Last updated: 14 August 2014
Swede on 8 May 2007

Category: Uncategorised

Replies: 2

Last updated: 10 May 2007

Steroids
by Paul Cooke (May 10)

Many people do take long term steroids for various conditions, but usually intermittent courses. Are you taking prednsiolone in varying doses every day? Or are you receiving regular 'courses' of the

by sandy craine (May 9)

i am not sure that long term steroid use is really desirable. if you still have the side effects that are so severe that you still need steroids after 12 months then i would suggest that you should

by Swede (May 8)

Hi

Just wondering if anyone else been on long term steroids in order to tolerate the side effects of Glivec? I’ve been on Glivec for nearly a year now and steroids for the same amount of time
Category: Uncategorised

Replies: 2

Last updated: 10 May 2007
Bill on 8 May 2007

Category: Uncategorised

Replies: 5

Last updated: 10 May 2007

What do I ask?
by zaviemiller (May 10)

Hi Bill and John,
You have both been diagnosed very early in the chronic phase of CML. It has been my experience that Gleevec works really well and very quickly for these patients. Hope to enroll

by Janet (May 8)

Hi Bill
Welcome to the club! I was diagnosed last September and asked the same question about centres of excellence a few weeks ago. The following is taken directly from Sandy's reply:
"certainly

by fehr (May 8)

Hi again Bill,
Three weeks on Glivec and wbc is down to 7.5. All other parameters in normal range.
Incidentally, back in the early 1970s, I was involved in developing and setting up exclusion

by Elizabeth Rees (May 8)

I support what John said above. There are other CML Centres across the country though, where do you live ? The Hammersmith is regarded as the best and the whole team there are excellent. The
Category: Uncategorised

Replies: 5

Last updated: 10 May 2007
technician69 on 7 May 2007

Category: Uncategorised

Replies: 31

Last updated: 7 June 2007

Daughter diagnosed with CML
by kestrel (Jun 7)

Hi Dawn,

Yes, he was sick the very first time he took it! After that he just felt nauseous and the hosp prescribed an anti-sickness drug called Ondansetron, which he took for a few weeks. He

by technician69 (Jun 7)

Hi Kathy, I am going to get Rebecca to take her tablets with her evening meal and see how that goes. She does not like spicy stuff any way so I don`t think that will be much of a problem. All she

by technician69 (Jun 7)

Hi Kathy I am going to try and get her to take them with her evening meal and see how that goes. She does not really like spicy stuff so I don`t think that will be a problem. All she wants at the

by kathy (Jun 7)

hi dawn,i used to take mine with breakfast but was always sick,tell rebecca to take them with her largest meal,and stay away from spicy food,if you or rebecca ever want a chat email me on kathy.
Category: Uncategorised

Replies: 31

Last updated: 7 June 2007
ivanbert on 6 May 2007

Category: Uncategorised

Replies: 1

Last updated: 9 May 2007

Liver Function Test
by Bill (May 9)

Hi,
I had a quick chat with my Onc/Hemo today and asked them about liver functions in relation to Glivec use. She said that sometime these will go up and normalise themselves. Gleevec works

by ivanbert (May 6)

Hello everyone,
I live in Perth Western Australia and have bee Dx since Dec 06. Since then all my FBCs have been normal, Im curretly awaiting the results of my first PCR test.(fingers crossed)
Category: Uncategorised

Replies: 1

Last updated: 9 May 2007
kathy on 6 May 2007

Category: Uncategorised

Replies: 5

Last updated: 5 July 2007

anemia
by suzzie (Jul 5)

Hi Kathy: I just wrote a post recently on Anemia. I am having the same problem, and I just wrote in about my Platelets. Everything is going low on me. I have a very good Oncologist/Hemotologist

by kathy (May 9)

paul,thank you so much for your reply,im gonna ring the doc today,thanks again,kathy

by Paul Cooke (May 9)

Hi Kathy,
When your Doctor told you about your anaemia, did they say what your Haemoglobin (Hb) level was?

This will determine whether you need it to be investigated further.

My wife (

by kathy (May 7)

Thanks for your reply but has anyone any ideas,thank u,kathy
Category: Uncategorised

Replies: 5

Last updated: 5 July 2007
David on 6 May 2007

Category: Uncategorised

Replies: 1

Last updated: 9 May 2007

Dasatinib Funding in the NHS
by Paul Cooke (May 9)

Interestingly, public funding for Dasatinib is now agreed in Scotland, but NOT as yet the rest of the UK.
I think, in these post devolution days, we are going to see an increasing number of funding

by David (May 6)

On 2 May below, I said I would post when I had a reply from NICE as to its attitude to Dasatinib. The reply I have received is as follows (with parts of it highlighted in bold by me):
"Many thanks
Category: Uncategorised

Replies: 1

Last updated: 9 May 2007
Mark Ostapiak on 3 May 2007

Category: Uncategorised

Replies: 2

Last updated: 6 May 2007

US CML support grop?
by Nancy C. (May 6)

Hi Mark,

There are very active US CML support groups. As mentioned above, to to www.newcmldrug.com and click on CML Talk. From this site you can find links to all the other cml support groups

by Steven D (May 4)

Dear Mark,
We are sorry that you had to find us. But you will be more than welcome to post here.
Ask any question and I am sure it will be answered. If you want any further information you can

by Mark Ostapiak (May 3)

Hello,
I was looking for a US CML support group (I was diagnosed with CML in June 2006), but couldn't find one. Is it OK if I post on this group?
Mark

29 yo male with CML
Category: Uncategorised

Replies: 2

Last updated: 6 May 2007
Bill on 3 May 2007

Category: Uncategorised

Replies: 7

Last updated: 22 April 2015

Jaw Pain
by kathy55 (Apr 22)

I am overwhelmed with the changes to my body since starting tasigna! My numbers are great, dr couldn't be happier...... me however just want to crawl in a hole and die. Lost most of my hair in the

by Janet (Jun 1)

Hi Diana
Bone marrow taken from your chest?? YOuch - that sounds like it was painful. My consultant goes digging about in the back of my hip when he does mine and manages not to hurt at all, which

by Diana Green (May 26)

Diana G
Sorry it's taken me so long to reply - only just found your message of May 8!!
Glad to hear you're doing well. I'm OK, thanks. The doc says the blood is clear, I had a bit of bone marrow

by Janet (May 8)

Hi Diana
Yes I'm doing fine thank you. Had a visit to the hospital last week when the consultant did another bone marrow, so I have been hopping a little less athletically when the cramp strikes
Category: Uncategorised

Replies: 7

Last updated: 22 April 2015
leslie chambers on 2 May 2007

Category: Uncategorised

Replies: 6

Last updated: 7 May 2007

First Time Posting
by Elizabeth Rees (May 7)

Hi Les

This is great news. I have had a lot of problem in the past with Glivec suppressing my marrow, I used to spend more time off than on.

Glad to hear that the counts are picking up

by leslie chambers (May 6)

Hello Elizabeth & Ivan,just to update,blood levels well up since stopping Imatinib,particually platelets,Hb 10.9. WBC 6.9. PLts 155.Apparently, before you are born,the spleen makes some blood,

by ivanbert (May 6)

Hi Les
As far as I am aware multiple 0.000s are very good results. (im hopefully going towards that magic number ) But I am with Elizabeth being very interested to hear about more about your other

by Elizabeth Rees (May 5)

Hi Les

You are an old timer and you've done really well. I was dx in Feb.99. Your PCR results are very good indeed with no sign of CML at all.

I find your situation somewhat confusing
Category: Uncategorised

Replies: 6

Last updated: 7 May 2007
Elizabeth Rees on 2 May 2007

Category: Uncategorised

Replies: 5

Last updated: 9 May 2007

Anyone having difficulty in getting PCT to fund Dasatinib/Sprycel ?
by Paul Cooke (May 9)

Dasatinib costs are as follows:
20mg Tablet pack 56 £1216.43
50mg Tablet pack 56 £2432.85
70mg Tablet pack 56 £2432.85
Imatinib costs are:
400mg tablet pack 30 £1604.08
100mg tablet pack 60 £802.04

by sandy craine (May 4)

BMS UK have told me that dasatinib has a cost equivalent to 600mg of glivec. as most patients are given 800mg of glivec if they show signs of reistance then i cannot see how any pct can find grounds

by Elizabeth Rees (May 4)

Hi Keith

We are going to be back to the old campaigning days. First line lttr frm consultant to pct with letter from patient pointing out the costs implication and then make a lot of noise

by David (May 2)

Elizabeth
My understanding is that Dasatinib is less expensive than 800mg of Glivec and that patients on 800mg of Glivec should have no funding problem moving to a standard Dasatinib dose. However,
Category: Uncategorised

Replies: 5

Last updated: 9 May 2007
Elle on 1 May 2007

Category: Uncategorised

Replies: 2

Last updated: 4 May 2007

Dasatinib!!!
by Elle (May 4)

Hi Annie
Thanks for your reply. I've been writing it all down what i want to ask. I'll let you know how i get on.
Thanks
Elaine

by Annie Kennedy (May 1)

Elaine

Hope you get all the answers to your questions at your meeting - make sure you go armed with questions. I met Tessa Holyoake a few years ago when considering glivec/ transplant

by Elle (May 1)

Hi all
Just thought i'd let you all know i did not get started on Dasatinib last month. It has been decided that i go to Glasgow Royal to see Proff Holyoake. So i am going next week ( 10th ).
She
Category: Uncategorised

Replies: 2

Last updated: 4 May 2007
David on 26 April 2007

Category: Uncategorised

Replies: 7

Last updated: 6 April 2018

Headaches and extreme tiredness
by David (May 2)

Sandy - thank you very much.
David

by sandy craine (Apr 30)

dear David,

i can vouch for the homeopathic systems's power to help this form of headache. of course painkillers are purely palliative and the cause of the headaches is not addressed.

by David (Apr 29)

Pennie
Many thanks.
Kind regards
David

by Pennie (Apr 28)

Hi David and Val
Helios homeopathic pharmacy - 01892 537254 have a homeopath you can speak to over the phone. Perhaps the best way to find a local person is to contact the school of homeopathy in
Category: Uncategorised

Replies: 7

Last updated: 6 April 2018
sue on 26 April 2007

Category: Uncategorised

Replies: 4

Last updated: 11 May 2007

fluid retention
by Basil from RSA (May 11)

Hello Sue,

I have been on Gleevec 400mg per day for nearly 4 years now.

As a precaution against fluid retension my Clonical Haematologist put me on 40mg per day.

I still have

by Elizabeth Rees (Apr 27)

Hope the above suggestions help Sue. Hope you have an absolutely wonderful day and that the sun shines for you all next weekend.

Much love

Elizabeth x

by hoofinruth (Apr 27)

Try Pycnogenol - you can get it from Holland & Barratt. It's quite expensive. Although my mum is the CMLer I regularly visit this site. But I did recently suffer badly with fluid retention

by David (Apr 26)

My wife has this problem. The Consultant prescribed Fusamide, which she takes occasionally when the fluid retention is bad. It is very effective but there is a need to be near a toilet for several
Category: Uncategorised

Replies: 4

Last updated: 11 May 2007
Elizabeth Rees on 25 April 2007

Category: Uncategorised

Replies: 2

Last updated: 27 April 2007

Two new articles under Essential Reading
by Elizabeth Rees (Apr 27)

Hi David

My computer language skills are lacking. Thank you for pointing this out. I have remedied the problem.

E x

by David (Apr 26)

Elizabeth - there do not seem to any links to the articles in the two boxes.
Kind regards
david

by Elizabeth Rees (Apr 25)

Just posted two articles under Essential Reading to do with resistance and IM. Very interesting read.

Elizabeth
Category: Uncategorised

Replies: 2

Last updated: 27 April 2007
sandy craine on 25 April 2007

Category: Uncategorised

Replies: 3

Last updated: 27 April 2007

Brian Goodier- new member
by clare (Apr 27)

Hi
I live in wrexham also in pentre broughton how mad is that!!

if you ever want a chat email me on my husband email address

alistair@jones1109.freeserve.co.uk
clare x

by maidmarian (Apr 26)

I'm also from n.wales I was diagnosed with CML in dec 2001, I attend WXM maelor hospital, and I am a patient of Dr. WaTSON/Dr lalli Desoysa. When I was first diagnosed I was prescribed "hydroxieau

by clare (Apr 25)

Hi brian

Nice to hear somebody else from north wales im from there myself where do you go to be treated?I go to the shooting star in wrexham maelor and see dr watson.

I havent got a clue

by sandy craine (Apr 25)

i have copied brian's post -see below- from the 'what may have caused me to develop CML' page and would like to welcome Brian to our website.
sandy
Submitted by BRIAN GOODIER on Sat, 2007-03-24 19
Category: Uncategorised

Replies: 3

Last updated: 27 April 2007
hottuna on 25 April 2007

Category: Uncategorised

Replies: 4

Last updated: 26 April 2007

chest pain
by hottuna (Apr 26)

Hi Sandy,

Thanks for the feedback.

My GP has got reflux on his list to investigate, however, it was nine hours since I had eaten anything and other than occasional nausea and diaharea, I

by hottuna (Apr 26)

Hi Paul,

Thanks for the feedback. It was nine hours since I had eaten or taken my Glivec but I'll post when we do track down the issue.
Peter H

The Man From Oz

#825 Zero Club

by sandy craine (Apr 25)

hi peter,

the pain sounds really distressing, but given you have had the tests to rule out cardiac arrest, then there must be another cause?

reflux can be a problem with glivec and i

by Paul Cooke (Apr 25)

Hi,

Did the pain come on soon after taking the Glivec?

Sometimes medication can lodge in the oesophagus if not taken with enough liquid.

Just a thought.

Paul
Category: Uncategorised

Replies: 4

Last updated: 26 April 2007
claire hall on 23 April 2007

Category: Uncategorised

Replies: 5

Last updated: 24 April 2007

Pregnancy
by Coyney (Apr 24)

Wow Claire that's great news, I'm so pleased for you and your family. It must be so encouraging for other women in you position.
All the best,

Martyn
Please sponsor me!

by Maria L. (Apr 24)

Hi all,
It´s been a while since I last checked this wonderful web, and I´m so happy to first read: PREGNANCY.

I was 28 when I was diagnosed, about 4 years ago. I have been on Glivec since then

by MJS (Apr 24)

Congrats Claire!
It's great to hear that the Gleevec "holiday" went well and you're expecting a wee baby.
I've been on Gleevec for 18 months now and my wife is pregnant - 18 weeks pregnant, the bump

by clare (Apr 23)

thats amazing

im so glad there is hope out there for you to have children ive been asking my consultants for a few months now and he says to wait 2 years!but i think i will start pestering him
Category: Uncategorised

Replies: 5

Last updated: 24 April 2007
sandy craine on 23 April 2007

Category: Uncategorised

Replies: 1

Last updated: 7 May 2007

UK Patient Seminar
by KennyD (May 7)

Sandy - are there any plans to make webcast-type vids of the key parts of the conference, so that those abroad, or otherwise unable to attend, can hear the goings-on?
Regards,

Kenny

by sandy craine (Apr 23)

This years UK National Patient Seminar will take place in Edinburgh on Sat 24th November,2007. Prof Tessa Holyoake will be organizing it.

I understand that the place and date was a compromise
Category: Uncategorised

Replies: 1

Last updated: 7 May 2007
Apryl on 23 April 2007

Category: Uncategorised

Replies: 16

Last updated: 9 May 2007

Bone marrow harvest?
by Paul Cooke (May 9)

Hi Janet,
I'm surprised at that, it's less than a year since Anne had the harvest done - this was at UHW as opposed to LLandough, but I wouldn't have thought ther'd be that much variation.

by Janet (May 4)

Hello Paul
You may be interested to know that the policy seems to have changed at the University Hospital of Wales. I went to see my consultant yesterday, and now that I am nearly at CCR, asked him

by Apryl (May 3)

Hi Paul
I think I have made my mind up to have bone marrow taken from the hip like your wife, for various reason which I wont go into now. How was your wife afterwards, did it take long to get over

by Steven D (May 2)

Hi Apryl.
Sorry for the delay in getting back to you.
I had some flu like symptoms for a few days but nothing to really worry about. I started with the injections on Xmas Eve.
Regards
Steven D
Category: Uncategorised

Replies: 16

Last updated: 9 May 2007