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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
arrowsc on 18 April 2008

Category: Uncategorised

Replies: 6

Last updated: 22 April 2008

Effects of virus and taking Glivec
by michelle (Apr 22)

Michelle

Hi I am sorry to hear you are not well with a virus. I have a problem with glivec making me feel sick and I have been sick often after about 1 hour after taking it even if i take it

by SwanValleySue (Apr 21)

Craig
What dose are you on?
If 800mg you can split the dose (400 morning 400 night)

If 600mg you can do the same (400mg morning 200 night)

I take 600mg at one time

You have to eat

by arrowsc (Apr 18)

Thanks for the advice everyone, hopefully it will be a short lived virus and I can get back to normal soon. I will think about changing to taking the pill on an evening instead.
Thanks,
Craig A

by Steven D (Apr 18)

Hi Craig,

Sorry to hear your not so well.

Why don't you try taking it in the evening. I have always done it that way and never had any problems. I hear more and more people have switched
Category: Uncategorised

Replies: 6

Last updated: 22 April 2008
SwanValleySue on 18 April 2008

Category: Uncategorised

Replies: 5

Last updated: 7 May 2008

Break from Glivec and resumption
by SwanValleySue (May 7)

Bill
Just read your posting of reasons for CML.
At the first of my diagnosis I wondered how did I get this condition - I think that is a normal reaction,
However, I have racked my brains and no

by Bill Yellowley (May 6)

I have always took my Glivec after my evening meal with a large glass of water followed by a short walk with the dog ! I am currently taking 300 / 200 on alternate days and have been amazed how I

by SwanValleySue (May 3)

Bill
Glivec

I was orignally when first diagnosed on 100mg then to 200mg then to 400mg then to 600mg over a small period of time.
100mg a doddle - no problems at all but even at such a small

by Bill Yellowley (May 3)

Hi I have just reread my reply posted on the 18th.I should clarify that the reduced dose I was on was only a temporary measure. I will be steadily increasing the dose over a period of months till I
Category: Uncategorised

Replies: 5

Last updated: 7 May 2008
sandy craine on 14 April 2008

Category: Uncategorised

Replies: 1

Last updated: 15 April 2008

multi-targeted inhibitor AP24534 - ARIAD
by Dennis (Apr 15)

Sounds really, really promising Sandy. It's the T315I that we need to get!

by sandy craine (Apr 14)

AP24534 - a novel multi-targeted kinase inhibitor ARIAD’s second oncology product candidate, AP24534, is an internally discovered novel oral multi-targeted kinase inhibitor that has broad potential
Category: Uncategorised

Replies: 1

Last updated: 15 April 2008
Coyney on 12 April 2008

Category: Uncategorised

Replies: 2

Last updated: 13 April 2008

Im running the London marathon tommorow. Please sponsor me if you can afford to.
by Coyney (Apr 13)

Dear all,
Many thanks to all of you that sponsored my brother Craig and I for today’s London marathon. We returned home about an hour ago and are pleased to tell you all everything went really well

by kathy (Apr 12)

Good luck martyn,

kathy

by Coyney (Apr 12)

Dear all,
I'll be running the London marathon tommorow for the second time since my transplant in November 2005 for Leukaemia CARE.
The training's gone fairly well alhough I had a 3 week break
Category: Uncategorised

Replies: 2

Last updated: 13 April 2008
donnaberry on 10 April 2008

Category: Uncategorised

Replies: 7

Last updated: 18 April 2008

Weight Gain
by SwanValleySue (Apr 18)

Good topic
For those who do not want to use a diuretic -

if you go on an eating plan named Salt Skip Program

- which was devised for Menieres, High Blood Pressure control

and

by donnaberry (Apr 14)

Sandy

Thanks for your help I am seeing my Onc tomorrow will mention the plasma test.

Donna x

by sandy craine (Apr 12)

Hi Donna,

I understand why you might be unwilling to take a diuretic as this may have the effects of upsetting your sodium/potassium balance. Anyway you have to take Glivec every day so why

by donnaberry (Apr 11)

Thanks for your comments! Sandy I was given a pill for water retention by my onc but I don't take it regularly enough (my fault) to see the effects.

I was an avid runner before dx and now do
Category: Uncategorised

Replies: 7

Last updated: 18 April 2008
Dennis on 10 April 2008

Category: Uncategorised

Replies: 1

Last updated: 11 April 2008

Projection.
by sandy craine (Apr 11)

Hi Dennis.......... thanks for letting us know what your consultant said. We all know that doctors are generally conservative in their opinions/estimates about therapy so this is good to hear.

by Dennis (Apr 10)

Just a quickie. I saw my new consultant yesterday. He told me that the projections for CML patients survival, were 30 years now. Of course, he added that was only a projection and time will tell,
Category: Uncategorised

Replies: 1

Last updated: 11 April 2008
fselman on 10 April 2008

Category: Uncategorised

Replies: 5

Last updated: 13 May 2015

CML, Glivec, flu vaccine, and anti viral medicine
by David Fitz (May 13)

I had a flu jab this year (I take dasatinib, if that matters) and besides a sore arm for a few hours, no problems whatsoever.

by fselman (Apr 11)

Thanks everybody for the advice. I will take it as soon as I get the green light from my hematologist.

Cheers,

Fernando

by donnaberry (Apr 10)

I had the flu jab and pneumonia jab about 3 mos ago. My arm ached like hell for 2 days the pneumonia side but nothing from the flu jab. I am so glad I had them both. I was dx last May.

by kathy (Apr 10)

Hi fernando,ive had the flu jab every year since i was dx,never had any problems,

take care,kath
Category: Uncategorised

Replies: 5

Last updated: 13 May 2015
leslie chambers on 9 April 2008

Category: Uncategorised

Replies: 2

Last updated: 20 April 2008

Re alcohol levels.
by denisetaylor (Apr 20)

I am having a collection of my stem cells next month,and are to be given G.C.S.F. injections for five days prior to this. Does any one who has experienced this know if I continue to take Glivec

by sandy craine (Apr 11)

Thanks for the feedback Les. Good to know patients questions/thoughts can contribute to our doctors ideas about possible effects on therapy.

best,

Sandy

by leslie chambers (Apr 9)

Hi all,

Been to HH today and asked about low HGB counts and alcohol, there doesn’t seem to be any problem of it having a greater effect on low counts, as it’s about the volume of blood not the
Category: Uncategorised

Replies: 2

Last updated: 20 April 2008
clare on 9 April 2008

Category: Uncategorised

Replies: 6

Last updated: 12 April 2008

low white count
by sandy craine (Apr 12)

Hi Clare,

please do not worry.... the range for normal white cell count is 4 -11 but you must remember that that is for the general population who do not have CML and who do not need to take

by clare (Apr 11)

the doctors have never mentioned my white count before so i would have asumed it was normal!!! they havent ask me to go back before i travel on mon so hopefully i will be fine !!

app on the

by clare (Apr 11)

thankyou for your views will have a look on the website

by sandy craine (Apr 10)

It is with some agreement amongst clinicians that if your white count does not fall below 1.50 that you are quite OK. maybe in that case it would be best to stay out of crowded places but 2.2 is
Category: Uncategorised

Replies: 6

Last updated: 12 April 2008