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Anonymous (not verified) on 4 June 2008

Category: Uncategorised

Replies: 3

Last updated: 5 June 2008

Advice Please
by zaviemiller (Jun 5)

First
Y A H O O O !!! Y I P P E E E !!!
Number 1191 in the Zero Club
Zavie
Now
The difference between your two PCR resuts is not clinically significant to warrant a change in treatment. The PCR

by sandy craine (Jun 4)

Hi Linda,

I agree with all that Andy has said and regarding pcr's rising it really does depend on the sample taken/lab testing it/whether it was contaminated etc etc. That is why, as Andy has

by Andy Parkin (Jun 4)

Linda, You may have seen from a recent post of mine that my PCR's had risen from a low of .139 to .208 to .431, and that consultant has put me up to 600mgs from 400mgs.

All the advice seems to

by Anonymous (Jun 4)

Hi ..I would like some advice please.

I went to see my consultant yesterday

and he wants me to go on 800 ml of Glivec. My results from the last two Pcrs are 11 March ..hb 11.2 wbc 5.9 pl
Category: Uncategorised

Replies: 3

Last updated: 5 June 2008
sandy craine on 2 June 2008

Category: Uncategorised

Replies: 2

Last updated: 16 June 2008

LEUKAEMIA PATIENTS SUPPORT GROUP
by donnaberry (Jun 16)

Does anyone have any info on this....I am in the USA my (considerably older) brother is a perfect match for me he is in the UK. Has anyone ever heard of harvesting a possible donor's BM for future

by Carol (Jun 3)

We both look forward to seeing you all at our meeting on Saturday which should prove to be another interesting meeting & a chance for both patients & carers to meet together.
Please note the

by sandy craine (Jun 2)

EVERYONE WELCOME
LEUKAEMIA PATIENTS SUPPORT GROUP
CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane Road

London W12 0HS
SATURDAY 7th June 2008

10.30AM – 1.00PM
Category: Uncategorised

Replies: 2

Last updated: 16 June 2008
richard bolam uk on 1 June 2008

Category: Uncategorised

Replies: 6

Last updated: 3 August 2008

cml in milton keynes
by Belinda Whitting (Aug 3)

hi richard we both hope your still doing ok. bit confused about mark wwhen he went last tues he saw a lady doc who seemed concerned that his blood counts werent doing what they should so she was

by richard bolam uk (Aug 2)

hi Belinda
hope mark is still on the up. i have news there are two new docs starting soon and word is the hospital are very excited to get them ..... time will tell . drop me a line maybe we can

by Belinda Whitting (Jul 13)

hi richard, hope you are doing ok? mark is doing well on his meds, he is a bit worried now dr moir has left because like you he doesnt really click with his new doctor, & it worries him because

by richard bolam uk (Jun 29)

hello to the lady above and mark, i thought i was reading about my self there ! Dr Moir was the guy who looked after me until he went, now i am being seen by some other guy who i just dont click
Category: Uncategorised

Replies: 6

Last updated: 3 August 2008
fehr on 28 May 2008

Category: Uncategorised

Replies: 2

Last updated: 29 May 2008

Hooray for Glivec
by Andy Parkin (May 29)

John, Many congrats on such a good result after 1 year !!

Andy

by sandy craine (May 29)

Dear John,

Big Fat Congratulatons on your Big Fat Zero.... spectacular results!.... ;o)

Sandy

by fehr (May 28)

After just one year my BMB gave a big fat zero and PCR test result was 0.008%. I make that a 4.1 log reduction. For me, Glivec seems to be working well with tolerable side effects.
Zavie, you've
Category: Uncategorised

Replies: 2

Last updated: 29 May 2008
Mistymoo on 27 May 2008

Category: Uncategorised

Replies: 3

Last updated: 28 May 2008

Stomach pain and belly button changes!
by sandy craine (May 28)

Sorry I have no idea why he might be experiencing this problem... but it may be that he has some sort of infection. Salt water bathing might help but I would again say that his doctor should know

by Mistymoo (May 28)

Thanks for response.
His spleen was enlarged at initial dx. He has a very bad habit of saying he's fine when the Dr asks "how are you today?". He often tells them he's fine because at that moment

by sandy craine (May 28)

Your dad should mention this to his doctor as the spleen can be enlarged which is why he is feeling discomfort and pain. His doctor should certainly have examined him at diagnosis to see if the

by Mistymoo (May 27)

Hi
Dad was dx last August. He says that before the dx he had stomach pains which seemed to come from the spleen area. He is still getting these but has not mentioned it at any of his appts. Is it
Category: Uncategorised

Replies: 3

Last updated: 28 May 2008
cmlblogger on 23 May 2008

Category: Uncategorised

Replies: 2

Last updated: 26 May 2008

Zavie I am more than just a number...
by sandy craine (May 26)

Dear Rob, great news about your falling PCR. wishing you many more zero's in the months to come ;o)
Sandy

by zaviemiller (May 23)

Y A H O O O !!! Y I P P E E E !!!
Number 1183 in the Zero Club
Zavie
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec since MAR/27/01 (400 mg)

by cmlblogger (May 23)

Well after 12 months on Imatinib I finally have got below 1.00 , and now down to 0.4 and pretty much continuing my trend for halving every 3 months. Really pleased to have got down and looking
Category: Uncategorised

Replies: 2

Last updated: 26 May 2008
sandy craine on 23 May 2008

Category: Uncategorised

Replies: 3

Last updated: 24 May 2008

Statement from Novartis Oncology on the supply of Tasigna for ENACT trial patients
by kazza62blue (May 24)

Please that in Scotland, it's only 4 months free supply post SMC decision which is due in June

by sandy craine (May 24)

hi Pennie,

The final two paragraphs of the Novartis statement should make you feel more secure....
"Novartis Oncology continues to work with all clinical trial investigators involved in the

by Pennie (May 23)

Sandy

Thank you so much for getting this staement from the Oncology Communications at Novartis. It is somewhat reassuring to know that they will cover the cost of the drug for 12 months.

by sandy craine (May 23)

Owing to Pennie's post about the closure of the ENACT trial programme and the worries that some trial patients might now have about the continuation of therapy with Tasigna, I contacted Novartis
Category: Uncategorised

Replies: 3

Last updated: 24 May 2008
Diana Green on 21 May 2008

Category: Uncategorised

Replies: 4

Last updated: 26 May 2008

Adrian on telly
by sandy craine (May 26)

Dear Susan,

thanks for posting this link. I have put a more permanent link under Newswire in the hope that it will be seen and signed by more people.
best wishes,

Sandy

by Flora (May 26)

My daughter is a student nurse attending Uni in Inverness, Scotland. Recently they were given a talk on bone marrow donation and the oportunity to go on the register. My daughter and her friends

by skiinglaketahoe (May 25)

http://petitions.pm.gov.uk/bone-marrow/
Everyone, please sign the petition to better publicise and educate everyone about bone marrow donation.
Susan

7 months post transplant

www.

by sandy craine (May 22)

Thanks Diana, I have taken a look at Adrian's blog and would suggest that people take a look at 'the drugs don't work' which suggest that Adrian is having a hard time at the moment in spite of his
Category: Uncategorised

Replies: 4

Last updated: 26 May 2008
Pennie on 20 May 2008

Category: Uncategorised

Replies: 2

Last updated: 20 May 2008

End of AMN 107 trial
by Peter Capel (May 20)

Pennie: The procedure for the continuing supply of drugs for the participants of the trial should be enshrined in the Protocol document. In the case of Trial 106 (the trial where STI 571 was

by sandy craine (May 20)

Hi Pennie,

I understood that the ENACT trials were to end at some point after April. What were you told by your hospital?

As far as I understand most clincal trials end when the drug is

by Pennie (May 20)

Hi everyone,

I have just been told by the hospital that the trial I am on (amn 107/Tasigna) finishes on June 15th. This is not what I was told when I started on the trial in Jan this year.
Category: Uncategorised

Replies: 2

Last updated: 20 May 2008
valandi on 20 May 2008

Category: Uncategorised

Replies: 1

Last updated: 28 May 2008

Side Effects
by fehr (May 28)

See this thread:

http://www.cmlsupport.org.uk/?q=node/580
It doesn't seem to have materialised yet. Any progress Sandy?
John

by valandi (May 20)

Some time ago I think i read that someone was going to database the common side effects of CML medication for reference. Anyone know if this happened and where we can find it?
Phil
Category: Uncategorised

Replies: 1

Last updated: 28 May 2008
Basil from RSA on 19 May 2008

Category: Uncategorised

Replies: 1

Last updated: 19 May 2008

Great news
by sandy craine (May 19)

Thanks for keeping us all updated Basil. Your PCR at .0004 would be envied by some people I am sure, but it is great to hear that you have your undetectable status back ;o)

best wishes,

by Basil from RSA (May 19)

I have been BCR-ABL undetectable for about 3 years now, but in January my QRT-PCR showed up 8 copies of BCR-ABL. This only related to a ratio of 0.0004 of BCR/ABL:GUS.

Although my
Category: Uncategorised

Replies: 1

Last updated: 19 May 2008
Lorraine Rollo on 18 May 2008

Category: Uncategorised

Replies: 1

Last updated: 23 May 2008

Travel Insurance
by PAUL (May 23)

Is there an age limit with age concern? I mean lower limit.

by Lorraine Rollo (May 18)

Thanks to Angie Kennedy I took the tip to try Age Concern for travel insurance and saved a fortune.
I am now covered for CML for a trip to egypt for a week in July for only £36 - compared to £450!
Category: Uncategorised

Replies: 1

Last updated: 23 May 2008
hcy0da on 15 May 2008

Category: Uncategorised

Replies: 3

Last updated: 16 May 2008

BCR/ABL Percentages
by keith Pratt (May 16)

Hello Helen

Had the same problems as yourself, but in 2001, took a bit of juggling about to get the optimum dose for you. It is not true, that one dose fits all, but the dose you are on is

by Andy Parkin (May 15)

Helen, Given how I felt about my readings, I can really appreciate how you feel. I do hope that some of the avenues that Sandy has outlined in her post are pursued when you visit Addenbrookes next

by sandy craine (May 15)

Dear Helen, I am sorry you are feeling so low and can understand why. Your response to Glivec has obviously not been optimal and you should talk to your doctor about the possibility of further

by hcy0da (May 15)

I have been reading with interest posts about the BCR/ABL results but can take no comfort.
I was diagnosed back in May 2007 and was given 400mg Glivec. My first PCR result came back in Oct 07 at 32
Category: Uncategorised

Replies: 3

Last updated: 16 May 2008
fehr on 13 May 2008

Category: Uncategorised

Replies: 1

Last updated: 14 May 2008

Let a little sunshine in.
by keith Pratt (May 14)

Hello

well said, use the power of nature to your benefit, we all need Vit D and the best natural source is sunshine, used sensibly, very good for you. No good being a cave dweller and becoming

by fehr (May 13)

Over the last few months, I have had small itchy patches and "gritty" areas almost anywhere which were slowly increasing in number/size. I had earlier got rid of an unpleasant rash by using
Category: Uncategorised

Replies: 1

Last updated: 14 May 2008
annette ward on 13 May 2008

Category: Uncategorised

Replies: 3

Last updated: 15 May 2008

Dasatinib - side effects?
by Annie Kennedy (May 15)

It is really useful to know what the common (and even uncommon) side effects are so that you know to watch out for them. I can't help directly (having been on glivec 400mg since 2003) but don't know

by annette ward (May 15)

Thanks Keith for your helpful comments. Mum was pleased to hear your story and how you have got on. I will let you know if she will be at Hammersmith on 11th June. At the moment she is going up

by keith Pratt (May 14)

Hello Annette

Hope I can help you and your Mum, I went onto dasatinib in November 2006, after five years on Glivec (sti 571) due to Glivec treatment 'plateauing' and values becoming stationary

by annette ward (May 13)

My mum, aged 73 has just started to take dasatinib, as she was not achieving a lowering of her PCR on gleevec. She has started on 70mg per day, but is worried about possible side effects. The
Category: Uncategorised

Replies: 3

Last updated: 15 May 2008
ruth on 13 May 2008

Category: Uncategorised

Replies: 1

Last updated: 14 May 2008

prc results
by sandy craine (May 14)

Dear Ruth,

i can imagine you are very pleased, many congratulations of such a low pcr.

best to you,

Sandy

by ruth (May 13)

Hi Everyone,
Just thought i would share my latest pcr with you.
0.001
very pleased
ruth
dx may 04
Category: Uncategorised

Replies: 1

Last updated: 14 May 2008
Andy Parkin on 13 May 2008

Category: Uncategorised

Replies: 12

Last updated: 2 July 2008

BCRABL/ABL results
by KennyD (Jul 2)

Hi Andy and Janet - seems i'm in about the same situation as you after 18 months - see my new posting. All the best to you both on the higher dosage! I don't know if we can get the plasma testing

by Andy Parkin (Jun 18)

Sandy, I just wanted to say thanks again for the info posted on this website re this issue.

I got my plasma test result back via my consultant, earlier this week, and it was low at 511 nano

by Andy Parkin (May 28)

Hi Janet,

Many thanks for the additional web link. Again it seems a very useful update on current thinking on CML and a good comparison of the various medications available in the States.( and

by Janet (May 27)

Hi Andy
I came across this discussion as well by Dr Druker, Dr Talpaz and Dr Sawyer, in it Dr Talpaz states that if you can maintain CCR for 4 years, then the future looks as bright as if you had
Category: Uncategorised

Replies: 12

Last updated: 2 July 2008
Paul Cooke on 11 May 2008

Category: Uncategorised

Replies: 3

Last updated: 12 May 2008

Glivec - cml & skin
by SwanValleySue (May 12)

Good Morning all
18months 600mg
Yes - even though I do not think my skin has thinned

- more that it looks like it has lightened.
I have had several types of skin issues.
Blood Blisters

by wkeeping (May 11)

Paul,
You are definitely not alone. A number of people, including myself, find that their skin breaks easily or bruises easily. This seems to be due to thinning of the skin. I found a reference to

by Simon Clayson (May 11)

My wife (Denise) has the same problem. Even quite gentle knocks leave a wound that takes some time to heal. She was diagnosed nearly 4 years ago and is currently on 400mg of Glivec. Her skin has

by Paul Cooke (May 11)

Has any one experienced problems which my wife has been for a little while (now approx 5 years after dx, on Glivec 400mg for 1 year, 600mg for 3+ years).

My wife (Anne) feels that her skin is
Category: Uncategorised

Replies: 3

Last updated: 12 May 2008
sue on 8 May 2008

Category: Uncategorised

Replies: 2

Last updated: 12 May 2008

sunshine remember the sun block
by keith Pratt (May 12)

Hello Ladies

Never heard of this before, was on Glivec for 5 years, did not encounter ther problems you mention, mind, I have always been an outdoor person, country boy at heart, so I suppose

by SwanValleySue (May 9)

Ditto Sue
I was also doing the washing (Australia)

(not a hot day - just pleasant 25 degrees - overcast in part)

warm enough to wear a Tee Shirt.

Not summer in Australia of those

by sue (May 8)

Just thought I'd say how lovely it is to have some warm sunny weather and to remind us cmlers to use sun block. I went out on wednesday to hang out the washing and to the shops forgetting how
Category: Uncategorised

Replies: 2

Last updated: 12 May 2008
Apryl on 7 May 2008

Category: Uncategorised

Replies: 5

Last updated: 12 May 2008

Cant wake up
by keith Pratt (May 12)

Hello

Have you tried taking your medication during your main meal of the day ? Not before, not after, but in between mouthfuls. I used to take mine like this and never did have any problems

by kathy (May 7)

Hi there your not on your own ,i cant function at all in the morning,it takes me ages to come round,i take my glivec after tea which helps with the sickness but within an hour of taking them im

by kestrel (May 7)

Hi Apryl,

Rio takes ondansetron (on prescription)to prevent nausea, about an hour before his imatinib - seems to work a treat.

Best wishes,

kestrel

by Apryl (May 7)

they make me feel sick so I try to get to sleep before the nausia start. Dont think I could face sitting at work and feeling green.
Category: Uncategorised

Replies: 5

Last updated: 12 May 2008