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sandy craine on 9 June 2008

Category: Uncategorised

Replies: 1

Last updated: 9 June 2008

SMC approves nilotinib for chronic stage CML
by Janet (Jun 9)

Hi Sandy
I think that is brilliant news, an excellent beginning! Now that the Scottish Medicines group has approved Nilotinib, then hopefully NICE and the Medicines Strategy group in Wales will

by sandy craine (Jun 9)

The Scottish Medicines Consortium (SMC) approves Tasigna® (nilotinib) for use in patients with Philadelphia chromosome positive (Ph+) chronic myeloid leukaemia (CML) who are intolerant of or
Category: Uncategorised

Replies: 1

Last updated: 9 June 2008
cmlblogger on 9 June 2008

Category: Uncategorised

Replies: 1

Last updated: 9 June 2008

broken bones - anythign to consider
by Diana Green (Jun 9)

Diana G
Rob's posting has reminded me to warn other CML people about what was a very unpleasant consequence of taking the antibiotic CoAmoxiclav while on 400mg of Glivec per day.
I had the nasty

by cmlblogger (Jun 9)

So i managed to break my nose last week, by not quite catching a softball, ouch (these by the way are not soft!, actually broke my oakley sunglasses in 2!)
I lost what looked like a lot of blood and
Category: Uncategorised

Replies: 1

Last updated: 9 June 2008
Apryl on 7 June 2008

Category: Uncategorised

Replies: 1

Last updated: 7 June 2008

Happy Birthday Zavie
by zaviemiller (Jun 7)

Thank you,
The blessed event happened June 4, 1938 in Montreal Canada
I am still shaking my head.
Zavie
Zavie Miller (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

by Apryl (Jun 7)

Zavie, I've just noticed that some time over the past two weeks you have changed your personal details from 69yrs to 70yrs of age. Hope you had a great birthday. Your a real inspiration, if you can
Category: Uncategorised

Replies: 1

Last updated: 7 June 2008
MarkandCharlotte on 6 June 2008

Category: Uncategorised

Replies: 2

Last updated: 6 June 2008

Newly diagnosed awaiting BMT
by sandy craine (Jun 6)

Hi Mark,I understand your concern and worry. Given that she has responded so well to Glivec,I would suggest a second opinion and agree with Zavie that Dr. Eduardo Olavarria at Hammersmith Hospital

by zaviemiller (Jun 6)

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

Number 1192 in the Zero Club

Zavie
My best advice for your friend is to get to a CML specialist as quickly as possible. My choice would be Dr.

by MarkandCharlotte (Jun 6)

My 27yo girlfriend of 12 years was diagnosed with leukaemia in february of this year. Initially she was told she had AML, however after futher tests this was changed to AML philadelphia +.
Category: Uncategorised

Replies: 2

Last updated: 6 June 2008
sandy craine on 5 June 2008

Category: Uncategorised

Replies: 3

Last updated: 6 June 2008

donating blood and signing up to marrow registry
by julie hubbard (Jun 6)

the national blood service will only take people up to 45. Anthony Nolan is 40. I only know because my friend is 43 and she was turned down by anthony nolan and just mentioned it in passing when

by Mo (Jun 6)

My sons have been blood doners for a long time, but have also signed to go on the bone marrow register, when I was dx 6 yrs ago
Maureen

by Simon Clayson (Jun 6)

I tried to join the bone marrow register when I donated blood recently. I was told I was too old which was a bit of a shock at age 55! I am due to give blood again soon so I will check - maybe

by sandy craine (Jun 5)

My daughter Nina had planned to become a donor since I had my transplant in 2003 but somehow had never got around to it. However after reading Adrians petition, she sent it to all of her friends and
Category: Uncategorised

Replies: 3

Last updated: 6 June 2008
garym161 on 5 June 2008

Category: Uncategorised

Replies: 2

Last updated: 5 June 2008

Sportmans Dinner In Aid Of Leukaemia Research
by sandy craine (Jun 5)

Hi Gary,

good luck with your fundraising dinner. I was born and brought up on Liverpool and my family still live there. I was thinking that you might also be able to encourage people at the

by Tufty3 (Jun 5)

Hi Gary
I would love to come, but I live too far away and have too many commitments this weekend. Anyhow, good luck with it and your ongoing treatment!
All the best,

Chris

DX Jan 2001

by garym161 (Jun 5)

Hi I contacted this forum in December when I found out I had CML. Things are going better now even though I am off Glivec for two weeks to see if the side effects calm down (lumps in breasts, rash
Category: Uncategorised

Replies: 2

Last updated: 5 June 2008
sue on 4 June 2008

Category: Uncategorised

Replies: 2

Last updated: 5 June 2008

gleevic and omega 7
by Tufty3 (Jun 5)

Hi Sue
I don't take any supplements, other than a daily multi-vitamin tablet;but I have read that increasing your intake of Omega3 and reducing your intake of Omega6 is good at reducing the risks of

by sandy craine (Jun 5)

Hi Sue,

I have not used this but it sounds quite interesting.
http://www.siberiantigernaturals.com/seabuckthornoil.htm
I am not sure if it would have any effect on the absorbtion of Glivec

by sue (Jun 4)

Does anyone take omega 7 supplement I would like to know if its ok to take whilst on gleevic

thanks sue d
Category: Uncategorised

Replies: 2

Last updated: 5 June 2008
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