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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
Peter Miles on 6 May 2008

Category: Uncategorised

Replies: 2

Last updated: 7 May 2008

British Transplant Games
by Peter Miles (May 7)

Hi Julie

Trust you are well too. I'm doing real good although working silly hours again - something I vowed I would never go back to! I'm at the Royal on 14th May.

Take care

Love

by (May 7)

Hello Peter
Hope that you are keeping well - I havent bumped into you at the Royal on my last few visits.
Best of Luck for the British Transplant Games - hopefully I will see you soon. My next

by Peter Miles (May 6)

Dear All
Just a reminder that the British Transplant Games take place in Sheffield from 6th to 19th August - all ages and abilities are most welcome. Closing date for entries is 31st May. Follow
Category: Uncategorised

Replies: 2

Last updated: 7 May 2008
Phil Poole on 6 May 2008

Category: Uncategorised

Replies: 1

Last updated: 6 May 2008

Patient Study @ Hammersmith - Long Term Therapy with Imatinib.
by cmlblogger (May 6)

I think this is the same study but more details on the clinical trials web site
http://clinicaltrials.gov/ct2/show/NCT00632255?recr=open&cond="Myeloproliferative+Disorders"&rcv_s=02/05/2008

by Phil Poole (May 6)

Dear all,
Some of you may already know of, or may have already been approached to participate in a 3 month study conducted by Dr. Marin at the Hammersmith. I was asked to take part as I have been
Category: Uncategorised

Replies: 1

Last updated: 6 May 2008
Colin Woodall on 4 May 2008

Category: Uncategorised

Replies: 4

Last updated: 14 May 2008

Is this as good as it gets?
by Colin Woodall (May 14)

Hi Keith,
thankyou for your comments and observations. You have clearly had quite a journey thus far. I do realise that those of us diagnosed since Glivec appeared have an easier time than those who

by keith Pratt (May 12)

Hello Colin

Yes it does get better,I can assure you, tiredness is somthing that you will find you can live along with and adjust around it. I was dx in 1996, and have tried most therapies,

by Colin Woodall (May 10)

Hi John,
thanks for your comments. I am 48 and until I was diagnosed I led a very busy life. I worked long hours running a small company and what leisure time I had was always filled with jobs at

by johnh (May 8)

Hi Colin,
It sound like you are where I was after the first year. My energy levels varied a lot. I would tend to feel very tired for 10 days or so every month. This was usually associated with a
Category: Uncategorised

Replies: 4

Last updated: 14 May 2008
Bill on 2 May 2008

Category: Uncategorised

Replies: 3

Last updated: 7 May 2008

BCR ABL RESULTS
by Apryl (May 7)

My PCR test got me spooked when it went in the wrong direction, even though it was only a tiny increase from .23 to .26 but when they did the next one it was going back down in the right direction

by sandy craine (May 3)

Hi Bill,

the difference between .039 and .044 is negligible and as your doctor says is really not significant. It is not a reduction it is really just about the same result.

Hopefully

by mariansy (May 3)

Hi Bill
I know how you feel - my last PCR rose from 0.1 to 0.5 and I too had a panic. I was told by Dr Ho that the increase was not large enough to be significant. I am now waiting for the results

by Bill (May 2)

Hi Everyone,
I have a quick question, the doctor posted by BCR ABL results to me today and I was slightly unerved to read them. I have had a good decrease each test (diagnosed April last year)
Category: Uncategorised

Replies: 3

Last updated: 7 May 2008
technician69 on 28 April 2008

Category: Uncategorised

Replies: 4

Last updated: 7 May 2008

Rash.
by fehr (May 7)

Dawn,

I found Doublebase cream applied morning and evening a great help. Hydrocortisone and E45 didn't work anywhere near so well.

John

by Bill Lubbock (May 7)

I a sa very itchy rash on Glivec tothe point where I flt like giving up on the whole thing. However, after being off the drug for ten days and restarting with prednixolone 20 mg decreasing to 5

by technician69 (Apr 29)

Thanks Rob, I have emailed her consultant and she has said try E45 cream, then if it gets worse take her to see the doctor. Dawn xxx

by cmlblogger (Apr 28)

is it excema, I have since childhood had very mild excema, since taking imatinib/gleevec I have had it more often, I use a simple (from any pharmacy , non prescription) hydrocortosone cream or gell
Category: Uncategorised

Replies: 4

Last updated: 7 May 2008
SwanValleySue on 26 April 2008

Category: Uncategorised

Replies: 3

Last updated: 3 May 2008

Glivec reaction? Vivid Dreams
by leslie chambers (May 3)

Hi Sue,

When I started out on Glivec, in 2000, it was’nt long before I had the most vivid dreams, thankfully none of them were nightmarish, but they were in brilliant colour. I used to recount

by tkrober (May 2)

Ken Roberson

I started having very violent dreams during the first few months I was on Gleevec, and violence is not my nature. The nurse advised that this was occurring with several people.

by Flora (Apr 26)

I have been on a variety of doses of Glivec for the past 10 months and I too have had very vivid dreams. Not bad dreams - just much more vivid with some really surprising people in them (both

by SwanValleySue (Apr 26)

Good Afternoon All
An Australian has asked this question about anyone having experienced vivid dreams since taking glivec.
Please advise of your experience - If you have any suggestions that would
Category: Uncategorised

Replies: 3

Last updated: 3 May 2008
Colin Woodall on 25 April 2008

Category: Uncategorised

Replies: 2

Last updated: 27 April 2008

latest pcr results
by sandy craine (Apr 27)

Dear Colin,

congratulations on your latest pcr result. you now have a really good reason to celebrate and bragging is definitely encouraged.

best wishes,

Sandy

by zaviemiller (Apr 26)

Y A H O O O !!! Y I P P E E E !!!
Number 1174 in the Zero Club
Zavie
Zavie Miller

zmiller@sympatico.ca

by Colin Woodall (Apr 25)

Hello everyone,
this post is intended to give a little bit of hope to anyone recently diagnosed with cml who is worrying about the future, although I must admit there is also an element of bragging
Category: Uncategorised

Replies: 2

Last updated: 27 April 2008
michelle on 24 April 2008

Category: Uncategorised

Replies: 5

Last updated: 28 April 2008

Another one for the gals!! post menapause at 43!!
by michelle (Apr 28)

Michelle

Hi thank you for all your kind comments and its nice to know that I am not the only gal who seems to have had this problem,

the themal ablasion certainly did stop my periods so

by Lorraine Rollo (Apr 26)

Hi everyone - just thought I'd write and say me too! Since turning 40 my periods have been a nightmare and are really beginning to get me down. Been to gynae appt at hospital three weeks ago and

by SwanValleySue (Apr 26)

Michelle
As you would have read my posting of One for the Gals!!
My periods were A-OK and I was not one for having period problems when diagnosed with CML and commenced on glivec (600mg).
Co-

by patricia dever (Apr 25)

Hi Michelle, I've been on Glivec for almost 5 year, I'm now 43, and I had the same things happen to me, except I didn't have any blood transfusions. After 2 years I finally had a hormone test and
Category: Uncategorised

Replies: 5

Last updated: 28 April 2008
michelle on 24 April 2008

Category: Uncategorised

Replies: 7

Last updated: 29 April 2008

pcr not a good result talking about Dasatnib please advise
by keith Pratt (Apr 29)

Hello to you all

Nothing to worry about, Doctors would not promote the idea if it was dangerous ? I had enjoyed a trouble free five years with Glivec, but it could not take me any further,

by Tufty3 (Apr 28)

Hi Sandy
Many thanks for your comments. I think I will try going direct, and then re-approach my consultant, if necessary. I will update when I have some news.
Best wishes

Chris

by michelle (Apr 28)

Michelle

Thank you all for your comments it really does feel nice to know you are not alone. I am going back in June to see the results of the pcr and discuss further if the results seem to

by sandy craine (Apr 26)

Hi Chris,

just replying here to your question on the thread below regarding plasma testing.

I am so sorry you consultant does not see the usefullness of this as it is NOT just for
Category: Uncategorised

Replies: 7

Last updated: 29 April 2008
denisetaylor on 22 April 2008

Category: Uncategorised

Replies: 3

Last updated: 29 April 2008

Harvestng cells
by keith Pratt (Apr 29)

Hello Fernando

Purpose of this proceedure is to give the clinicians a store of your own 'clean' stem cells for future use in your treatment, either for a boost when necessary, or an autolugus

by fselman (Apr 24)

Just for curiosity, as this procedure has not been mentioned by my hematologist.
Thanks,
Fernando

by (Apr 22)

Hello Denise
I had cells harvested at The Royal Hospital in Liverpool.
I had to come off Glivec for two weeks before having this done.
Try not to worry as this isnt painful or anything maybe a bit

by denisetaylor (Apr 22)

I am having a collection of my stem cells next month, and am to be given G>C>S>F> for five days prior to this,does anyone know if I continue to take Glivec during this time, or have any
Category: Uncategorised

Replies: 3

Last updated: 29 April 2008
jaynelister on 21 April 2008

Category: Uncategorised

Replies: 8

Last updated: 26 April 2008

Happy News Re; Aaron
by sandy craine (Apr 26)

Hi Jayne and Aaron.

I have been away for a week but I am so pleased to come back to this wonderful news. It is such a milestone as you say and I am really pleased ... especially for Aaron of

by Phil Poole (Apr 24)

Hi Jane, Aaron & family,
I am really happy for you all. What a wonderful life changing moment, and something that will always stay with you.
Very best wishes from all my family and I,
Phil.

by SwanValleySue (Apr 23)

What a WOW Moment !!!
you had reason to be emotional -
After 5 years and now NOW this moment
Heartfelt feelings of joy for your family and Aaron at this time
Sue

by (Apr 22)

Hello Jayne
I am so happy for you all!!!

What Wonderful News!!!
Love and Best Wishes
Julie Valentine x
Category: Uncategorised

Replies: 8

Last updated: 26 April 2008