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Jim Simpson on 9 April 2009

Category: Uncategorised

Replies: 5

Last updated: 15 April 2009

Bosutinib
by zaviemiller (Apr 15)

Hi Jim,
Sorry to hear about your recent PCR result. Glad to hear that they are redoing the PCR test. A 2 log increase is pretty dramatic and needs to be acted on quickly. If the result is not a blip

by Jim Simpson (Apr 13)

Hi Sandy

You may be right regarding the one off blip and I think that is why the nurse is having me come in earlier to have an other PCR test done and have the results in time for my doctors

by Jim Simpson (Apr 13)

Hi Tracy

The answer to your question is – I don’t know – but it is possible that they are not available or maybe this new one suits my profile. It’s all to early to say but I will certainly

by sandy craine (Apr 10)

Hi Jim,

hopefully your PCR will be a one of 'blip' and you will not need to change drugs. Usually 3 consecutive PCR's are required to confirm the 'trend' of your results rather than a one off
Category: Uncategorised

Replies: 5

Last updated: 15 April 2009
sue on 8 April 2009

Category: Uncategorised

Replies: 4

Last updated: 2 May 2009

feeling cold and night sweats and gleevic
by clare (May 2)

hi

havent spoke for a while but ive been getting this for years ,wakeing up soaking with sweat and then really cold all the time!!

i also suffer from hot flushes (alot recently )and

by kathy (Apr 9)

Hi sue,ive been on glivec since 0ct 03 and im just the same.Im always cold to the bone.xx

by SwanValleySue (Apr 9)

Sue
I am also PCRU
I also have night sweats - and during the day (just hot)
and suprising I also have if not a sore throat but a scratchy throat
Always cold to the bone (now that is a glivec issue

by patricia dever (Apr 8)

Sue, I've been on Glivec almost 6 years and the same thing happens to me, Im cold during the day, night sweats and sometimes wake up during the night with a sore throat. I just put it down to
Category: Uncategorised

Replies: 4

Last updated: 2 May 2009
Pennie on 2 April 2009

Category: Uncategorised

Replies: 1

Last updated: 4 April 2009

Thyroid nodules anyone?
by sandy craine (Apr 4)

Hi Pennie,

usually nodules indicate an underactive thyroid glad... hypothyroidism. Both my mother and sister-in-law have underactive thryroid and have had nodules (both had them removed)..

by Pennie (Apr 2)

Well it seems to be my time for problems ! Have been having severe back pain so had a CT scan, then a ultra sound and 3 nodules were found on my thyroid gland. Am on the list for an urgent needle
Category: Uncategorised

Replies: 1

Last updated: 4 April 2009
Paul Cooke on 29 March 2009

Category: Uncategorised

Replies: 10

Last updated: 27 April 2009

Length of time since diagnosis
by johnh (Apr 27)

I have now had my regular chat with the consultant but, unfortunately, he couldn't tell me what my PCR result was. It has now been four weeks since my blood test and still no result. However, the

by Des (Apr 21)

Just come back from HH from the first of many monthly monitorings. My wbc, platelets hbg etc had not changed from a month ago when I stopped the Glivec initially. I was surprised that the wbc

by sandy craine (Apr 18)

Hi Kenny,

I just wanted to say congratulations on the improvement in your pcr results after the increase in dose. Its good to hear positive stories from positive people like you. I am sure it

by Kenny (Apr 13)

Hi Paul,

I was diagnosed in 2003 and have been on Glivec since January 2004 and have achieved 0.012 % PCR. Within 18 months I had shown significant improvements in molecular response
Category: Uncategorised

Replies: 10

Last updated: 27 April 2009
Pennie on 27 March 2009

Category: Uncategorised

Replies: 10

Last updated: 2 May 2009

Funding agreed
by Ali Loram (May 2)

Hi Pennie, what a small world, I live about 1/2 away from paignton. I have a house there which is let out, its on the cliff (where the steam train runs) overlooking Broadsands beach! It would be

by Pennie (May 1)

Sorry Ali - there is an Ali up here in London near me I have been trying to get in contact with !!! Where abouts in Devon are you based? My family lived in Paignton, and I know that area really well

by Ali Loram (May 1)

Pennie

hope it will be ok, let us know your results.
Coffe sounds great but a bit of a way to travel..I'm in Devon, perhaps you thought I was someone else!!
What side effects have you

by Pennie (Apr 30)

Hi Ali
Had a biopsy this week, now I have to wait until May 13th to see thyroid specialist
Hope you are well.

Perhaps we could manage that coffee soon?
ATB

Pennie.pennie
Category: Uncategorised

Replies: 10

Last updated: 2 May 2009
tadlaw on 25 March 2009

Category: Uncategorised

Replies: 3

Last updated: 27 March 2009

Combined Therapy as Tx for CML - Anything new??
by michael (Mar 27)

I asked my consultant about a Dasatinib/Nilotinib/other cocktail but the drug costs put it out of reach(NICE would have a fit)

by tadlaw (Mar 27)

Thanks so much. It would be wonderful if a combined therapy or a cocktail would work one day to eradicate CML entirely. My 11 y/o (with CML) has decided to become a scientist, so maybe one day he'

by kazza62blue (Mar 26)

This sounds like Tessa Holyoake in Glasgow's "GIMI" trial who was trying to bring CML cells out of quiescence. 3 arm study with a)continuous Glivec, b)glivec "holiday" 1 week out of 4, c)same as b

by tadlaw (Mar 25)

Hi,

In 2008, some reports came out addressing "quiescent CML stem cells" that are "impervious to BCR/ABL inhibitor therapy".
Those studies seemed to recommend that a combined therapy, a
Category: Uncategorised

Replies: 3

Last updated: 27 March 2009
vicki h on 25 March 2009

Category: Uncategorised

Replies: 3

Last updated: 30 March 2009

Paracetamol and periods
by technician69 (Mar 30)

Hi Vicky, Becky may daughter (16) had very heavy periods after starting on Glivec. Her consultant put her on Northisterone, these stop her periods fully. She does have very bad cramps in her

by SwanValleySue (Mar 25)

Vicki
600mg glivec dose
My suggestion is to get yourself a really good gynno who will

share care your health with your CML specialist.
I and many women have your experience of erratic and very

by sue (Mar 25)

susan dickerson Hi Vicki, Sorry you are having these problems and at least your consultant says this is a side effect of gleevic/cml where as my consultant dismissed this. I have had cml for 9

by vicki h (Mar 25)

One for the ladies maybe - I've been expeincing far more erratic and painful periods over the past few years. I've been on Glivec for 7 years now. I take lots of poaracetamol and never thought about
Category: Uncategorised

Replies: 3

Last updated: 30 March 2009
Des on 20 March 2009

Category: Uncategorised

Replies: 6

Last updated: 24 March 2009

Has my CML gone?
by tadlaw (Mar 24)

Hi Des,

I'm very interested in your progress as you begin your journey without Gleevec. My son is only 11 y/o. He still has a way to go before his CML is undetectable on PCR (last .068). Yet

by Colin Woodall (Mar 22)

Hi Des,
Best of luck with this. I too will be watching with interest. I have only been PCR undetectable for 6 months but I hope I reach the position you are in eventually.

Regards,

Colin

by patricia dever (Mar 21)

Hi Des
I'm in a position to stop Glivec, my PCRs have been clear for 4.5 years, and my consultant has mentioned it several times to me but so far I havent had to courage to stop completely.
I've

by Barbs (Mar 21)

Hi Des,

my dr here in france told me on Tuesday that they now have 70 patients who've been able to stop their Glivec like this - it's still about 50% who become PCR positive again, but they
Category: Uncategorised

Replies: 6

Last updated: 24 March 2009
karen on 18 March 2009

Category: Uncategorised

Replies: 5

Last updated: 29 March 2009

Travel Insurance
by Paul Cooke (Mar 29)

Hi,

We've used Post Office Insurance for travel within Europe for the last six years since Anne's been diagnosed, they do a telephone medical screening and will cover cml for extra premium.

by Martha Stuart-Berrisford (Mar 25)

i've used insure and go. We usually pay for annual travel insurance and they have been pretty good. The only minus is that they will not cover my cml but will cover everything else.

by sandy craine (Mar 19)

Try some of the companies listed on the FAQ under the main menu.

Your can get an online quote from Travelbility.....

....www.travelbility.co.uk
Sandy

by Janet (Mar 19)

Hi Karen
Try Age Concern :-) - they will cover anyone of any age and the quote I thought was reasonable. They asked lots of sensible questions about the drug I was taking, and whether I went for
Category: Uncategorised

Replies: 5

Last updated: 29 March 2009
Bram on 17 March 2009

Category: Uncategorised

Replies: 3

Last updated: 19 March 2009

Lower Glivec dose suggested as white count is too low.
by zaviemiller (Mar 19)

Hi Bram,
Listen to Michael. You really don't want to be treated by a 'fill-in' consultant who knows very little about treating CML. Get yourself to someone who has lots of experience in treating CML

by Simon Clayson (Mar 18)

My wife was in a very similar situation to you about 3 years ago. She was not responding to Glivec as well as we had hoped and her white cell count started to fall. She was attending our local

by michael (Mar 18)

I have been in your situation,but I was able to self inject GCSF to keep my white cell count up,best advice if your not already being treated at a specialist CML clinic such as the Hammersmith or

by Bram (Mar 17)

I sincerely apoligise for starting a new thread when there are others similar but in my defence, I have searched and not found one thats the same.

Prior to going to the hospital today for my 2
Category: Uncategorised

Replies: 3

Last updated: 19 March 2009
chris murphy on 16 March 2009

Category: Uncategorised

Replies: 7

Last updated: 22 March 2009

medication for acid reflux
by michael (Mar 22)

I have the USA drug notes for Sprycel/dasatinib,thats 11 A4 pages, Section 7.2 long term suppression of gastric acid by H2 antagonists or proton pump inhibitors(eg famotidine and omeprazole)is

by keith Pratt (Mar 21)

Hi - I am on Dasatinib, having changed from Glivec over two years ago. I was prescribed Omeprazole for use when necessary, which it never was really, I also read the drug fact sheet on Dasatinib,

by sandy craine (Mar 18)

Hi Chris.......sorry to hear Brian is suffering with this effect. Apart from the drugs used to neutralise stomach acids (which is not ideal as the digestive acids are essential)Brian could try

by chris murphy (Mar 17)

Many thanks for replies. I have been in touch with Tessa Holyoake's office at the Beatson, Glasgow and she has given the go ahead to take lowest dose 20 mg of omeprazole last thing at night. I
Category: Uncategorised

Replies: 7

Last updated: 22 March 2009
josecisne7 on 13 March 2009

Category: Uncategorised

Replies: 3

Last updated: 24 March 2009

on 800mg imatinib
by tadlaw (Mar 24)

Hi

Some patients don't respond well to Gleevec & are switched to dasatinib. There's also another med out these days- but I'm not too sure of the name (it begins with the letter "N"). My

by josecisne7 (Mar 16)

thank you sandy for this information , i will be more patient, hopefully next test will be better .

by sandy craine (Mar 16)

Dear Jose,

I am hopeful that 800mg will mean that you see evidence of a cytogenetic response which means that the cells that are positive to PH chromosome will start to reduce. If this does

by josecisne7 (Mar 13)

i was recently put on 800mg of imatinib and wainting for another cystogenetic test to se if my ph cromosone is gone and also 2 other altered chromoson get handled , iguess more than anything my
Category: Uncategorised

Replies: 3

Last updated: 24 March 2009
Pennie on 12 March 2009

Category: Uncategorised

Replies: 3

Last updated: 12 March 2009

Help please I can't open itemplate letters on the site
by sandy craine (Mar 12)

Hi Pennie and all,

I have checked the links to the templates and they work fine. Go to Essential Reading on left hand menu and scroll down until you hit Template Letters etc....
However I

by Paul C (Mar 12)

Cut and paste this to bypass the link that is not there...
http://www.cmlsupport.org.uk/?q=node/689
Paul C

XXXX

by cmlblogger (Mar 12)

I cannot get these either sorry
rob - http://cmlblog.spaces.live.com

by Pennie (Mar 12)

Hi Sandy or anyone who can help. I don't seem able to open the link to the template letters, to MP and PCT.
Ineed these as a matter of some urgency. If anyone can open this link could they please
Category: Uncategorised

Replies: 3

Last updated: 12 March 2009
karen on 11 March 2009

Category: Uncategorised

Replies: 6

Last updated: 28 March 2009

Results
by technician69 (Mar 28)

Hi Karen, sorry not been on for a while to reply to you. Becky is on Glivec 500mg a day, we may try Datasanib if her bloods do not come down to zero but we are not sure yet whats happening. A BMT

by tadlaw (Mar 25)

I always get the results of all blood work. I also insist on receiving copies of the reports. I'm becoming very adept at following my son's trends & I've even learned that my son's blood

by karen (Mar 15)

Hi Dawn

Sorry to hear about Becky - thats a really young age - are you coping OK and are they planning on a transplant for her? I just mostly want to forget it which is probably why I just

by technician69 (Mar 14)

Hi Karen, we are the same when we go to the hospital, as long as the results are ok I do not make any note of them. Becky who is 16 does not feel the need to know her blood counts, as long as we
Category: Uncategorised

Replies: 6

Last updated: 28 March 2009
Pennie on 11 March 2009

Category: Uncategorised

Replies: 8

Last updated: 17 March 2009

Refusal to fund Tasigna.
by Pennie (Mar 17)

HI Bhiru Tried emailing you and the address won't compute ! is it bhiru@hotmail.com ?
You can email me at pennie.douglas@blueyonder.co.uk
Good luck with the wedding, and perhaps we can meet up

by Bhiru (Mar 17)

Hi Pennie,

Glad to hear Siobhan was supportive. And if you do need backup please don't be shy to ask. I know if we were in the same situation we'd do whatever we needed to fight the

by Pennie (Mar 14)

Thanks for your offer of support. I might take you up on that soon. Went to see Siobhan McDonagh on Friday, she was very supportive. Hope her contact with the PCT might bring about a change of

by Bhiru (Mar 14)

Hi Pennie,
As a fellow Merton resident I just wanted to let you know that you are in my thoughts at the moment with everything you are going through.

My husband has CML and was recently faced
Category: Uncategorised

Replies: 8

Last updated: 17 March 2009
arrowsc on 11 March 2009

Category: Uncategorised

Replies: 5

Last updated: 12 March 2009

PCR tests failing - no communication from hospital
by arrowsc (Mar 12)

Thanks Colin, I know of the centre which you refer to, It's the Centre for Life and they are a world leader in genetic research. Hopefully our issues can be resolved !!
Craig A

by Colin Woodall (Mar 11)

Hi Craig,
although I am treated at West Cumberland hospital in Cumbria my blood samples also go to Newcastle for pcr testing. Out of the last 4 tests 2 have failed. I share your frustration but I

by arrowsc (Mar 11)

Hi Sue, and thanks for your reply, the reason I don't phone up to get the results is that I find it too stressful to make the call to be honest. I used to phone up, but I found that the result was

by SwanValleySue (Mar 11)

Aust.
Craig
At times I had this experience, however unlike yourself

my medico nurses have contacted me and asked me to have the test done again - and sent out a new pathology form. Then just
Category: Uncategorised

Replies: 5

Last updated: 12 March 2009
Vangogh on 10 March 2009

Category: Uncategorised

Replies: 1

Last updated: 10 March 2009

The Story So Far
by sandy craine (Mar 10)

Dear Tony....... this is really great news. Many many congratulations.
Imatinib has revolutionised the prognosis of CML. Without access to this drug most CML patients would not survive in the long

by Vangogh (Mar 10)

Hi Everybody

I was dianosed with CML in June 2008, and have been on Glivec (400mg)since mid July 2008. No significant side effects as yet. The BCR/ABL tests have been reducing nicely, I am
Category: Uncategorised

Replies: 1

Last updated: 10 March 2009
sal on 9 March 2009

Category: Uncategorised

Replies: 1

Last updated: 10 March 2009

Nilotinib funding
by sandy craine (Mar 10)

Dear Sal,

your consultant should be congratulated ;o) If the pct refuses funding retrospectively then you must fight.... local media has a magical effect on PCT's. But I am sure that Robs

by sal (Mar 9)

After many weeks and numerous phone calls and emails we still do not know if Rob has been granted funding for nilotinib. However the consultant at our local hospital, having got fed up of waiting,
Category: Uncategorised

Replies: 1

Last updated: 10 March 2009
sandy craine on 6 March 2009

Category: Uncategorised

Replies: 5

Last updated: 9 March 2009

Support group in Derby area?
by chrissbb (Mar 9)

Yeah mate pretty random, i was born in Bradford lucky me :) been n Halifax over 20 yr , i like it here, You take care mate and many more happy birthdays to come .

by chrissbb (Mar 9)

Thanks Sandy , ive got my ap coming through from eye department for next eye test, also been to doctor and now having blood presure monitored , apart from that i,m feeling Ok at the moment. just

by cmlblogger (Mar 9)

Hi Chris - i share you birthday but was born exactly a year before you , and originally from west yorkshire
a couple of random coincidences
rob - http://cmlblog.spaces.live.com

by sandy craine (Mar 8)

Hi Chris,

thanks for your post. I am sure there are people in the area of West Yorkshire who would be interested in meeting up to form a support group, and it would be more accessible than
Category: Uncategorised

Replies: 5

Last updated: 9 March 2009
robert mcadie on 5 March 2009

Category: Uncategorised

Replies: 5

Last updated: 15 April 2009

bcr coount
by SwanValleySue (Apr 15)

Robert
I found the same issue - dairy does not only send me to the loo but also I feel quite queezy during the day
I found eating quite alot of food - stodgy prior to glivec

does the trick
I

by michael (Apr 14)

Hi Robert,

dont be in a hurry to change to Dasatanib or Nilotinib,if your getting those results on Glivic stick to it,Neutrophils at 1.8 not bad ,you can have GCSF if required to surport your

by robert mcadie (Apr 13)

thanks
Have had a test for mutations and am relieved that it has come back negative. Neutrophils down to 1.6 but am reassured by you being allowed home after transplant with a result of 1.

I

by sandy craine (Mar 8)

Hi Robert,
It might be that you would see a deeper response with another drug... either dasatinib (Sprycel) or nilotinib (Tasigna).... If your doctor is willing to change your therapy I suggest you
Category: Uncategorised

Replies: 5

Last updated: 15 April 2009