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sandy craine on 11 December 2008

Category: Uncategorised

Replies: 1

Last updated: 12 December 2008

UK CML patient seminar -Summary
by jaynelister (Dec 12)

Hi Sandy,
Thanks for this, I will direct everyone to this from our site too.
Much love
Jayne x

by sandy craine (Dec 11)

Hello all,

I have finally managed to upload the summary of the recent UK CML Patient Seminar which took place in London on November 15th...

Many thanks to Janet Perry for providing me
Category: Uncategorised

Replies: 1

Last updated: 12 December 2008
Ali Loram on 10 December 2008

Category: Uncategorised

Replies: 2

Last updated: 16 December 2008

Nilotinib
by Ali Loram (Dec 16)

Dear all, just wondering if anyone has experianced a rash whilst on nilotinib? I develped this after only being on the drug for 4 days. i have had a sore mouth as well but thats getting better. I

by sandy craine (Dec 11)

Dear Ali,

so glad things have worked out well for you ;o)) nilotinib and dasatinib do not have cross intolerance with imatinib or each other, so you should see a lot of the problems you had

by Ali Loram (Dec 10)

Hi to you all. I am so pleased to say that my local PCT have agreed to fund Nilotinib for me (very bad side effects on Glivec). I was at the clinic yesterday and have collected my first supply, so
Category: Uncategorised

Replies: 2

Last updated: 16 December 2008
kiruba ganesh on 9 December 2008

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Replies: 4

Last updated: 17 December 2008

regarding white hair
by kiruba ganesh (Dec 17)

I am 25 years old,and i had black hair during past 2 years taking Glivec 400mg and 600mg regularly.From last two weeks onwards suddenly my hairs change to white.After taking 800 mg only this will

by John Ford (Dec 14)

My son Edward is 8 1/2 years old and has been on Gleevec since he was 22 months old. He has developed quite a few white hairs over the years which we have always attributed to the Gleevec. So I

by SwanValleySue (Dec 11)

Hi all
My hair has not gone white - pepper and salt - thank god for hair dressers - now is blonde, red, brown, and gold colourings.

Now that is ageing!!
However my hair has thickened

by cmlblogger (Dec 9)

don't want to appear rude, but are you sure that this is not natural ageing?
rob - http://cmlblog.spaces.live.com
Category: Uncategorised

Replies: 4

Last updated: 17 December 2008
Colin Woodall on 7 December 2008

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Replies: 3

Last updated: 9 December 2008

Is this molecular remission?
by tadlaw (Dec 9)

Hi Colin,
I'm not certain what your consultant is referring to here. From what I understand, you have billions of cells. An aspirate looks at a slide of about 200 cells. A PCR looks deeper at many

by Colin Woodall (Dec 8)

Hi Sandy,
thanks very much for your response. Congratulations on your 10 years by the way.
Best regards,
Colin

by sandy craine (Dec 8)

Hi Colin,

mmmm, as your doctor described the results this time in a different way... i.e by using cells good and bad to describe a PCR test (rather than FISH/cytogenetics?)which is usually

by Colin Woodall (Dec 7)

I have recently had my 18 month PCR results. My consultant phoned them to me a few days ago and said that the news is good because they showed, in his words "8000 good cells and no bad ones". This
Category: Uncategorised

Replies: 3

Last updated: 9 December 2008
sue on 4 December 2008

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Replies: 1

Last updated: 7 December 2008

yorkshire region cml support group
by SwanValleySue (Dec 7)

Congratulations
10 years
It gives me confidence - I am only two years from DX

and boy have heaps happened in that time.
I live in a rural area of Australia - and there is absolutely no-one

by sue (Dec 4)

Hi to all congratulations to Sandy on your 10 year anniversary,I am coming to 9 years in January 2009. Several months ago I asked if there was anyone with cml that lived in the Leeds,Bradford,
Category: Uncategorised

Replies: 1

Last updated: 7 December 2008
sandy craine on 4 December 2008

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Replies: 13

Last updated: 15 December 2008

10 years since diagnosis
by zaviemiller (Dec 15)

Dear Sandy,
Best wishes on your 10th anniversary.
Zavie
Zavie Miller (age 70)

67 Shoreham Avenue

Ottawa, Canada, K2G 3X3

dxd AUG/99

INF OCT/99 to FEB/00, CHF

No meds

by jaynelister (Dec 12)

Sandy, Just wanted to say 'Happy 10 Year Anniversary'
Things have come such a long way in this time havent they.
I would like to take this opportunity to thank you for all the support you have given

by Gisela (Dec 9)

Dear Sandy,

You are an inspiration to all and your help and support over the years has been extremely valuable and we are very grateful for all the good advice you have given us personally.

by Dennis (Dec 7)

The outlook when we were diagnosed was much bleaker than today - there really wasn't much to look forward to pre-Imatinib days. That first news of STI 571, well what a bolt from the blue that was. I
Category: Uncategorised

Replies: 13

Last updated: 15 December 2008
tadlaw on 3 December 2008

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Replies: 3

Last updated: 15 December 2008

MMR in 6 Months
by zaviemiller (Dec 15)

Y A H O O O !!! Y I P P E E E !!!
Number 1233 in the Zero Club
Zavie
Tracey, please send me your email address - zmiller@sympatico.ca
Zavie Miller (age 70)

67 Shoreham Avenue

Ottawa,

by technician69 (Dec 7)

Hi Tracey, what great news to hear that Ben has had a fantastic response. Its really good to achieve MMR in the first 6 months!!! All the best Dawn xxx

by sandy craine (Dec 4)

Dear Tracey,

what good news! Ben has had a great response and I am sure will see further reductions over the next months

Enjoy your thankgiving ;o))

Sandy

by tadlaw (Dec 3)

Hello,
I'm just so happy to report that my son, Ben, has decreased his CML from PCR 100% in May 2008 to Q-PCR 83.6% in July to Q-PCR 1.6% in September to Q-PCR .065 in November 2008. His aspirate is
Category: Uncategorised

Replies: 3

Last updated: 15 December 2008
chattena on 1 December 2008

Category: Uncategorised

Replies: 2

Last updated: 2 December 2008

CML support group Yorkshire Region
by valandi (Dec 2)

We live in Lincoln; don't know of a local group but may be interested

by Tufty3 (Dec 2)

I live in the Newark/Lincoln area and would be interested in being involved in a local support group. Does anybody know if one already exists, in this area?
If not, perhaps we could become part of

by chattena (Dec 1)

If anyone in the Yorkshire region is interested in a CML supprt group please see the flyer below.
Chronic Myeloid Leukaemia Support Group
Have you been affected by Chronic Myeloid Leukaemia?
Would
Category: Uncategorised

Replies: 2

Last updated: 2 December 2008
ssilver on 30 November 2008

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Replies: 2

Last updated: 1 December 2008

Recurrence of CML After Interferon
by Dennis (Dec 1)

Stephen, I might have misunderstood you here, but were you not on any treatment in between ending the interferon and starting the Glivec - 10 years later?

Incidentally, I was on interferon for

by sandy craine (Nov 30)

Dear Stephen,

I am amazed you have tolerated a high dose IFN regime for so long. However, there is a lot of evidence that those patients who have been pre-treated with IFN and then

by ssilver (Nov 30)

After 9 years of daily high dose Interferon and then 10 years of being 'clean', my CML has recently come back with a vengeance. I have started Gleevec and am hopeful.
Has anyone out there had a
Category: Uncategorised

Replies: 2

Last updated: 1 December 2008
Tufty3 on 27 November 2008

Category: Uncategorised

Replies: 13

Last updated: 27 March 2010

Availability of new drugs, before NICE approval
by DPJ (Mar 27)

Hi, I am on Glivec on the Spirit trial. I have been told that dasatinib will help me if glivec fails, + I was reassured about this . Then received a letter that said NICE wouldn't recommend this

by Tufty3 (Dec 3)

Hi Sandy
Thanks for the additional advice;I will definitely use it, if and when I need to change treatments in the future.
Do you know what the latest thinking is, regarding a decision from NICE?

by Tufty3 (Dec 3)

Hi Karen
Thanks for the feedback. Every bit of experience could be useful to one of us in a similar situation right now, or in the future!
I hope it all works out with your new treatment.
Keep in

by karen (Dec 2)

I have to be honest and say I did nothing!

My consultant clearly thought it was the best drug and did the business case. I know he had spoken to others and to the Glivec drug rep who agreed
Category: Uncategorised

Replies: 13

Last updated: 27 March 2010
Paul Cooke on 21 November 2008

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Replies: 4

Last updated: 23 February 2009

PCR - Marrow vs peripheral blood
by vicki h (Feb 23)

My consultant at barts has dropped the levels to every 18 months or longer (if i make a long enough face at the metion of biopsy). I have been in cyto and molec remission for 6 years or so. I still

by Steven D (Nov 24)

Hi Paul,

I asked this very question at the recent seminar as I know there is mixed feeling amongst some doctors. The eminent consultants there were of the opinion that once the pcr reaches a

by Debbie (Nov 24)

Hi Paul,

I'm from Australia so I don't know if we do it different over here. I was dx with cml in June 2005. I have been on Glivec since then and I am in total remission. There is no

by keith Pratt (Nov 23)

Hi Paul

I understand what you mean, since transferring to Dasatinib from Glivec, I have not endured a marrow examination, so last visit to Hammersmith, I queried this and I was told, that as
Category: Uncategorised

Replies: 4

Last updated: 23 February 2009
kiruba ganesh on 18 November 2008

Category: Uncategorised

Replies: 3

Last updated: 23 November 2008

regarding weight reduction
by keith Pratt (Nov 23)

Hi Ladies

Seems we all have this problem....so why not try Weightwatchers No Count diet, great food, much as you can eat, and guess what......you loose weight!!!!!

Have fun and keep

by zaviemiller (Nov 18)

Hi Kiruba and Marian,
There are many of us in the same boat.
There is a group of CML patients trying to deal with losing (or maintaining) our weight. You can join us at:
http://health.groups.yahoo.

by mariansy (Nov 18)

Hi Kiruba
Can I join you with the weight lose - I crept from 45kg at Dx to 57Kg now - I'd like to lose about 4 - 5 Kg - shall we compare notes.
Anyone else want to join.
Marian

by kiruba ganesh (Nov 18)

dear all,

I am a cml patient.during diagnosis my weight was around 43kg.After 2 years of treatment my weight was increased to 53mg. iwant to reduce my weight without any side effects.I
Category: Uncategorised

Replies: 3

Last updated: 23 November 2008
Andy Parkin on 16 November 2008

Category: Uncategorised

Replies: 1

Last updated: 17 November 2008

Yesterday's Conference
by sandy craine (Nov 17)

Hi Andy,

great to meet up on Saturday.... and yes, it really was a good conference with great presentations. I particularly liked Prof. Foroni's workshop on Monitoring CML. She was very good

by Andy Parkin (Nov 16)

Thanks to all those connected with organisation of yesterday's conference. Really good speakers, very useful workshops and great venue. Thanks as well to all the doctors who gave up their saturday
Category: Uncategorised

Replies: 1

Last updated: 17 November 2008
Lorraine Rollo on 16 November 2008

Category: Uncategorised

Replies: 3

Last updated: 22 November 2008

Links between radon in cornwall and leukaemia
by Lorraine Rollo (Nov 22)

Hello Ali and Pennie - thanks for your comments. The Radon map of UK is available on the Health Protection Agency website. Hopefully this link will get you there:
http://www.hpa.org.uk/web/HPAweb

by Ali Loram (Nov 17)

Ali
Hi Lorraine, I to was at the CML conference & found it very informative & I learnt a lot. I came away feeling full of promise for the future treatment & who knows possibley a cure to

by Pennie (Nov 17)

Hi Lorraine, please can you let me have the link/reference for the map and paper. I am also very interested in finding out about Radon links and CML.
Great seminar on Saturday with lots of

by Lorraine Rollo (Nov 16)

Hi All - I was at the CML conference yesterday and Dr Goldman mentioned that there is a possible link between radon poisoning in cornwall and leukaemia.
Having done a bit of research I've found the
Category: Uncategorised

Replies: 3

Last updated: 22 November 2008
michael on 12 November 2008

Category: Uncategorised

Replies: 8

Last updated: 22 November 2008

recycle Glivec?
by Carol (Nov 22)

Hi Michael,
please could you contact me about you Extra Glivec my email is steven.carol@ntlworld.com would really appreciate to hear from you.
Such a shame we didn't get the chance to met at the

by michael (Nov 16)

Yes Kings treat 200+ CML patients,And I was born at the hospital so yes I feel lucky ,thanks Sandy for the information,

regards Michael

by michael (Nov 16)

Thanks Louise for taking the time to post,The big pink flyer arrived today and we will try to attend,

best regards Michael

by L0U (Nov 16)

Hiya,

The next CML patient/carer support group for Kings is on the 24th November 2.30pm-4.30pm at the Salvation Army HQ (opposite Denmark Hill Station).

I do beleive that Dr.Al.Ho will
Category: Uncategorised

Replies: 8

Last updated: 22 November 2008
Vangogh on 12 November 2008

Category: Uncategorised

Replies: 1

Last updated: 12 November 2008

CML Update
by sandy craine (Nov 12)

Hi Tony,

good to see your results are within normal ranges and stable. However I am sorry you are suffering from tinnitus, it must be distracting. I hope it is not too bad.

Hope to see

by Vangogh (Nov 12)

Hi

Just got back from Kings, latest results have kept pretty steady.WBC 5.37 PLT 253 Hb 13.4. Got to have another PCR test middle of December. I seem to have tinnitus, which I believe is a
Category: Uncategorised

Replies: 1

Last updated: 12 November 2008
sal on 10 November 2008

Category: Uncategorised

Replies: 4

Last updated: 12 November 2008

Pcr
by keith Pratt (Nov 12)

Hi Sal

Interesting post. I have achieved PCR value of 0.2 having halved from 0.4 in 6 weeks, I am very happy having waited 12 years for this to happen. All thamks to 2 years on Dasatinib and 5

by sandy craine (Nov 12)

Hi Sal,

has there been any suggestion of increasing the dose Rob takes? I am not sure that there is too much data on dasatinib and better pcr responses with increasing the dose, however I do

by sal (Nov 11)

Zavie

Thanks so much for you quick reply which was very reassuring. Rob is really well on Dasatinib and we would not want to rock the boat. With three young children transplant is something we

by zaviemiller (Nov 11)

Hi Sal,
Rob is in CCR and very stable. Why would you change this treatment and try one that has a mortality rate that is way too high for my liking.
In a recent teleconference, Dr. Brian Druker has
Category: Uncategorised

Replies: 4

Last updated: 12 November 2008
Andytyneside on 9 November 2008

Category: Uncategorised

Replies: 3

Last updated: 16 November 2008

Very dry skin after BMT
by Andytyneside (Nov 16)

Thanks for the comments.
I haven't used Diprobase, I'll ask about it as I'm back at hospital later in the week.
My ciclosporin is being reduced and I think the dryness is being caused by the GvHD

by jaynelister (Nov 13)

Hi there, My Son had this problem as well post BMT. I think its quite a common one. We were told not to use anything scented, ideally aqueous cream. I also used diprobase on him and that seemed to

by kestrel (Nov 12)

Can you get Diprobase cream? My foster son had a BMT about the same time as you and was given Diprobase in hospital. Maybe it's available on prescription? Ask at your hospital. He no longer uses it

by Andytyneside (Nov 9)

6 months ago now, I had a MUD bone marrow transplant. Everything was going fine until 2 weeks where my skin has become very dry, itchy and flaky. Specialist has recommended moisturising cream, but
Category: Uncategorised

Replies: 3

Last updated: 16 November 2008
sandy craine on 9 November 2008

Category: Uncategorised

Replies: 2

Last updated: 12 November 2008

UK Seminar Sat 15th November
by sandy craine (Nov 12)

Hi Pennie,

I would email Mandy (prof. Apperley's sec) to make sure your registration went ahead and they have taken into account your dietary needs... I emailed her last week and she responded

by Pennie (Nov 10)

Sandy
Could you clear something up for me please? No info recieved re places booked, also Gluten free food availablity. Plus telephone number on the registration page dose not respond !!!
Thanks

by sandy craine (Nov 9)

There are approximately 28 places left for the seminar... so if some of you want to attend then you still have time to register.
CML support would like to invite all delegates for a post conference
Category: Uncategorised

Replies: 2

Last updated: 12 November 2008
Vangogh on 3 November 2008

Category: Uncategorised

Replies: 2

Last updated: 4 November 2008

New to CML
by sandy craine (Nov 4)

hello Tony and welcome to this forum. You are right to be really encouraged by your latest results... 13% PH+ represents a major cytogenetic response and it is within 3 months of starting Glivec

by tadlaw (Nov 4)

Hello Tony,

Just sending out some positive thoughts to you with this note. My son (age 10) was diagnosed with CML in May 2008. It seems you're responding well to Gleevec. You should be

by Vangogh (Nov 3)

Hi Everybody

Just to introduce myself. I was diagnosed in June this year after feeling fairly unwell for about about a couple of months, and losing 2.5 stone in weight. After the usual blood
Category: Uncategorised

Replies: 2

Last updated: 4 November 2008