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Keith Danby on 10 June 2007

Category: Uncategorised

Replies: 11

Last updated: 5 July 2007

End of STI-571 (GLIVEC) trial
by suzzie (Jul 5)

Hi: I was in the clinical trial in the U.S., and when the FDA approved the Gleevec I was told if I ever ran into a problem due to finances that I was entitled to free pills. My insurance was

by Keith Danby (Jun 18)

Thank you very much Elizabeth , that's wonderful to hear and a great worry off my mind !! Hope to get that confirmed sooner rather than later !

Thank you Novartis for your fantastic drug !

by pat preston (Jun 18)

Have just read through these stories and am greatly relieved to hear your news Elizabeth. It has restored my faith in human nature. Well done Novartis - I have always trusted you - on Glivec since

by Elizabeth Rees (Jun 16)

I have just come back from a week's holiday so trying to catch up on the website.

This issue was raised by a patient earlier on last month and I queried this with Novartis who were adamant
Category: Uncategorised

Replies: 11

Last updated: 5 July 2007
MJS on 8 June 2007

Category: Uncategorised

Replies: 1

Last updated: 9 June 2007

Lymph Nodes
by Parmjit (Jun 9)

Matt
Given that you are only two weeks into the new treatment, I would as a precaution just get yourself checked out. Even if it is to dismiss any association with the new drug.
Hope you feel better

by MJS (Jun 8)

Evening!
I have a question to the regulars on CML Support and am hoping for some help to my query...
I've been on Desatinib for only 2 weeks now after being on Gleevec for 18 months. All is very
Category: Uncategorised

Replies: 1

Last updated: 9 June 2007
CHRISTINE MURPHY on 8 June 2007

Category: Uncategorised

Replies: 5

Last updated: 23 June 2007

nasty red rash predominently on forearms and lower legs
by suzzie (Jun 23)

I am new, and I hope this is going through.

I cannot say much about the rash, but its a good thing to get it checked out soon.

I am on Gleevec since 1998, and to this day I still have no

by Elizabeth Rees (Jun 18)

Hi Christine

Could the rash be Glivec related ? Some people do get quite a bad rash with Glivec which has to be treated with steroids and then it settles down. Haven't heard of rash with

by kestrel (Jun 11)

Hi Christine and Brian,

Im sorry I dont have anything useful to say, but just letting you know Im thinking of you. You're having a really tough time at the mo - here's hoping things settle

by CHRISTINE MURPHY (Jun 8)

Thanks Kathy, the first a.d. was dosulepine then prozac, which he is still taking, this is Friday I spoke to our gp practice but got snr. doctor in our practice who was useless, waiting for his
Category: Uncategorised

Replies: 5

Last updated: 23 June 2007
technician69 on 8 June 2007

Category: Uncategorised

Replies: 9

Last updated: 12 June 2007

Glive: the best time of day to take it?
by Paul Cooke (Jun 12)

For all your queries about when / how best to take Glivec, perhaps the following information provided by Novartis will be of help:
##############################################################

by kestrel (Jun 11)

Hi Dawn

Our lad takes it in the evening with a glass of water - we actually PAY him to take his meds- started that when he had lots of things to take and found tablets impossible to swallow.

by technician69 (Jun 11)

Hi Rob, I give Rebecca her Glivec late too. About 9.00pm with something to eat. She`s not keen on healthy stuff but I do try and make her eat salads etc. She drinks fruit squash with her meal and

by Paul Cooke (Jun 11)

Hi Dawn,
I would echo the suggestions of other contributors, DO NOT TAKE ON AN EMPTY STOMACH, TAKE WITH PLENTY OF LIQUID.
However, could you confirm what dose Rebecca is on? You referred to 5 x
Category: Uncategorised

Replies: 9

Last updated: 12 June 2007
Des on 7 June 2007

Category: Uncategorised

Replies: 3

Last updated: 11 June 2007

glucose intoklerance and Glivec
by hoofinruth (Jun 11)

Paul hi
Thanks for posting the link. Although most of it was too technical I got the gist of the article. I was angry to think that this knowledge was available at the time my mother suffered a

by Paul Cooke (Jun 8)

Hi Des,
I have found an interesting article which suggests the reverse of what your experiencing i.e a beneficial effect for patients who are diabetic and who also take Glivec.
http://jco.ascopubs.

by hoofinruth (Jun 8)

My mother was dx about 7 years ago and has been on Glivec (400mg pd) for 2 years. She too is diabetic (Type II).
She had the reverse problem to the one you've experienced. Because Glivec caused

by Des (Jun 7)

My husband is diabetic and regularly tests his blood sugar. Out of interest I took my blood sugar recently (we get tested at HH for everything except that I believe!) and to my horror the fasting
Category: Uncategorised

Replies: 3

Last updated: 11 June 2007
Sultan on 6 June 2007

Category: Uncategorised

Replies: 6

Last updated: 15 June 2007

New ...Can somebody explain me what is the meaning of my BCRABL level please ?
by zaviemiller (Jun 15)

Hi Freeda,
Skip Duffie from Halifax, Nova Scotia, Canada has had CML for 27 years.
This is quite remarkable because he still hasn't made it into the Zero Club. He is currently on the AMN107 trial.

by Freeda (Jun 13)

five year survivor
Not age wise...having CML the longest??
I slipped a few months ago and my Gleevec dosage was lowered from 400 mg per day to 400 one day and 200 the next///Anyone else been in this

by Freeda (Jun 13)

five year survivor
I am lazy and procrastanator...I don't come here often because it's too much work the way I go about it. Is it possible to have digest go directly to my email box?

Thanks,

by David (Jun 7)

Sultan
For a great explanation of all this, click on "FAQs/Glossary" on the left of this page and then go to "PCRs explained".
Regards
David
Category: Uncategorised

Replies: 6

Last updated: 15 June 2007
RACHEL HALSALL on 19 December 2007

Category: Uncategorised

Replies: 5

Last updated: 27 December 2007

TEETH
by RACHEL HALSALL (Dec 27)

Thank you Keith and Nancy for your information. We will discuss all options with the dentist in the new year. Better start saving the pennies, think its going to be costly! Does anyone know if you

by Nancy C. (Dec 27)

Hi Rachel,

YES, acid reflux can be called indigestion or heart burn...it is actually very common in even healthy people. On 800mg of Gleevec, I had acid reflux for quite a while....and my

by keith Pratt (Dec 26)

Hi Rachel

Teeth - I can agree with what is happening with Gary, I did take up this with my dentist friend, and she told me that it was a side effect of having cml and the treatment program. I

by RACHEL HALSALL (Dec 22)

Thank you Nancy for your information. I have booked a dentist appointment for Gary in the New Year. I think a calcium supplement and an increase in his milk intake may also help. He drinks a lot of
Category: Uncategorised

Replies: 5

Last updated: 27 December 2007
David on 18 December 2007

Category: Uncategorised

Replies: 1

Last updated: 18 December 2007

New Drug
by cmlblogger (Dec 18)

Bosutinib
rob - http://cmlblog.spaces.live.com

by David (Dec 18)

A doctor friend in Australia has Emailed us with some information presented at ASH by an Australian pharmaceutical company called ChemGenex.
Their drug, Omacetaxine, has been trialled on 21 CML
Category: Uncategorised

Replies: 1

Last updated: 18 December 2007
karen lloyd on 3 June 2007

Category: Uncategorised

Replies: 11

Last updated: 7 June 2007

Fake Tan
by kestrel (Jun 7)

I LOVE that kind of story! Cant wait for the next installment....

kestrel

by Diana Green (Jun 6)

Diana G

Once upon a time there was a grey-haired old crone who looked as though she'd happily polish off Hansel and Gretel for breakfast before lying back on the pillows and tucking into a

by clare (Jun 5)

HELLO ALL
I HAVE HIGHLIGHTS ALL THE TIME AND HAVE BEEN FOR A FEW YEARS NOW .I HAD A SPRAY TAN LAST WEEK AS I ALSO LOOKED LIKE A GHOST AND THERE WAS NO PROBLEMS AT ALL

CAN I ASK !! WHEN I WENT

by Elizabeth Rees (Jun 5)

Hello everyone

I've highlighted my hair with no ill effects and got a better sun tan with Glivec ! [not that is recommended to go in the sun of course, but this is me] Had holidays in Florida
Category: Uncategorised

Replies: 11

Last updated: 7 June 2007
donniejan on 30 May 2007

Category: Uncategorised

Replies: 1

Last updated: 2 June 2007

intense itching
by Elizabeth Rees (Jun 2)

Hi

I am afraid we know only about CML Chronic Myeloid Leukaemia and have no experience of Viraferonpeg. However, you could find there is a group dealing with this disease on www.acor.org

by donniejan (May 30)

I am recently diagnosed as having (cmml). My symptoms are a really intense itching from under the skin. I have been prescribed Viraferonpeg which is giving mixed results. I would dearly love to talk
Category: Uncategorised

Replies: 1

Last updated: 2 June 2007
Elizabeth Rees on 25 May 2007

Category: Uncategorised

Replies: 8

Last updated: 8 July 2007

Template letters to campaign for funding for Sprycel/Dasatinib
by Steven D (Jul 8)

Please find copy of the wording received my my MP and forwarded to me.
Quote

"Thank you for your letter of 29 May to Patricia Hewitt enclosing correspondence from your constituent about the

by BarryAllsop (Jun 5)

I have written to my MP, Oliver Letwin, a leading Tory, who will be anxious to harry the ministers . I await the reply.
Barry Allsop

by David (Jun 3)

My MP has replied too saying he has taken up the issues with NICE and the NHS and he will write again when he gets answers from them.
David

by kestrel (Jun 2)

Ive also had a reply from my MP (Conservative, so has a good reason to want to put pressure on Govt!). he has written to Patricia Hewitt and sent me a copy of his letter, also sent a copy of my
Category: Uncategorised

Replies: 8

Last updated: 8 July 2007
Sara on 22 May 2007

Category: Uncategorised

Replies: 7

Last updated: 15 June 2007

Low neutrophils
by skipd (Jun 15)

Hello Sara, I am not sure if your doctor is acting a bit hasty or not? I am not a doctor just another CML patient.

I have very low ANC down below 400.. I am not sure if your husband's count

by Swede (May 24)

Sorry - the last line of my post was meant to say that a short Glivec or IFN holiday may be all that Mike needs.

Sarah

by Swede (May 24)

Hi Sara
I’m also on the SPIRIT trial with the 400 mg Glivec and weekly IFN injections, and was in a similar situation to Mike. In my case, however, the infection came first (in my throat and chest)

by Sara (May 23)

Thanks for your comments Elizabeth and Kestrel. Mike is being treated at Nottingham City Hospital. He was in day case as his consultant Jenny Byrne was away, so the Doctor was an SHO on duty. Have
Category: Uncategorised

Replies: 7

Last updated: 15 June 2007
Bill on 21 May 2007

Category: Uncategorised

Replies: 5

Last updated: 28 May 2007

But I really want to exercise!
by fehr (May 28)

Hi Bill,
I'm 61 and have been on Glivec for 6 weeks.
I find it difficult to separate the side effects of Glivec from several other things that are wrong with me, but I am sure some lower leg pains

by david barnes (May 24)

Hi Bill I dont know how old you are or how much exercise you did before being ill.I used to cycle to work and go kickboxing

it is hard to get back at first but if your haemoglobin level rises

by MJS (May 22)

Hi Bill,
I know how you feel. Wanting to get mobile ASAP, to be feeling as 'normal' as you can...
30 minutes a day of walking is very good anyway and it's what is recommended to keep a healthy heart

by kestrel (May 21)

Hi Bill,

Is your haemoglobin level still low? If so, you'll likely see it improve on Glivec and with it, your energy levels will go up....be easy on yourself! 30 minutes a day seems pretty
Category: Uncategorised

Replies: 5

Last updated: 28 May 2007
Bill on 17 May 2007

Category: Uncategorised

Replies: 6

Last updated: 21 May 2007

Inno 406
by Bill (May 21)

Hi Elizabeth and Sandy,
Thanks for the feedback. I look forward to the template letters and will distribute them accordingly.
I look forward to hopefully meeting you in Scotland this November.

by sandy craine (May 21)

'.....Sandy,

If we cannot get drugs we need, what are the options? For example I found out the other week that if I lived in the PCT region next to mine, I would not have even gotten Glivec

by Elizabeth Rees (May 21)

Hi Bill

Glivec is NICE approved for frontline therapy for CML. The PCT cannot refuse to fund this and if there is anyone out there who is being refused funding for Glivec we need to know.

by Bill (May 20)

Hi Sandy
Yes you are right, one worry which we should not have to contend with is the fact of worrying how I will get the next drug if/when I become intolerent to Glivec, I had a very interesting
Category: Uncategorised

Replies: 6

Last updated: 21 May 2007
sandy craine on 14 May 2007

Category: Uncategorised

Replies: 8

Last updated: 24 May 2007

NICE -topic suggestion
by Paul Cooke (May 24)

We are caught in a 'cleft stick' in terms of funding any new treatments whether for cml or other conditions. On the one hand NICE has to make deliberations and recommendations, on the other hand

by keith Pratt (May 20)

Hi Sandie

Here we go again ! STI all over again. Possibly have the same problem myself with Dasatinib. You will rmeber that when NICE revued Glivec, they did send me their primary report for a

by sandy craine (May 16)

hi Sal,

thanks for your note about Rob's experience. it is heartening to hear that not all PCT's are prepared to be party to such short-sighted and cruel cost cutting. it is true that some PCT

by sal (May 15)

After Robs appointment with Graham Smith on 13 April Rob has been lucky enough to get Dasatinib easily. Our pct had already funded it for one patient and had told the Haematologist at our local
Category: Uncategorised

Replies: 8

Last updated: 24 May 2007
Elle on 10 May 2007

Category: Uncategorised

Replies: 6

Last updated: 6 July 2007

CML Seminar 2007
by Steven D (Jul 6)

Hi Denise,
The file is in PowerPoint that is why you might be having trouble opening it.
Sorry you had to find us.
we are all very helpful here. If we can help you with anything please don't be

by denisetaylor (Jul 6)

Thanks Steven,
Found that but when I try and download form, it says file type unknown,and sends me to windows market place so will get my son to help this weekend. Thanks again,first time I have

by Steven D (Jul 5)

Hi Denise,
Look to the right on this page and you will see under newswire dated Jul 2 Booking Form This is a link to get the booking form. If you have any problems please email me as steven.carol@

by denisetaylor (Jul 5)

I was diagnosed with CML last November, and I would like to go to the seminar in Edinburgh. How do I find out where the venue is and how to apply for a ticket.I am really hopeless with computers so
Category: Uncategorised

Replies: 6

Last updated: 6 July 2007
sandy craine on 10 May 2007

Category: Uncategorised

Replies: 21

Last updated: 25 May 2007

Please fill in the NICE 'Topic suggestion' form
by kestrel (May 25)

Done it - took just a few minutes

kestrel

by BarryAllsop (May 24)

Nice Form
Done
Barry Allsop

by David (May 19)

Me too!
Val

by Bill (May 17)

Done, thanks for letting us know about this.
Bill
Category: Uncategorised

Replies: 21

Last updated: 25 May 2007
Bill on 10 May 2007

Category: Uncategorised

Replies: 1

Last updated: 10 May 2007

Two Week Results
by Elizabeth Rees (May 10)

Hi Bill

It seems it is all going according to plan for you right. Long may this last and keep us posted.

With best wishes

Elizabeth

by Bill (May 10)

Hi,
Thanks to everyone who responded to my request to understand what questions to ask.
I have been on Glivec for a couple of weeks and just had my first two week follow up.
My initial white count
Category: Uncategorised

Replies: 1

Last updated: 10 May 2007
sandy craine on 9 May 2007

Category: Uncategorised

Replies: 4

Last updated: 10 May 2007

SMC says yes-NHS Scotalnd to fund Sprycel
by fehr (May 10)

It is my understanding, that, while NICE has not looked at Dasatinib, it is approved for use and the NHS is free to provide it if they see fit.
The Times said, this week, that the cost is about the

by Paul Cooke (May 10)

The following gives the most recent cost of these two drugs:
Dasatinib costs are as follows:
20mg Tablet pack 56 £1216.43
50mg Tablet pack 56 £2432.85
70mg Tablet pack 56 £2432.85
Imatinib costs are

by Bill (May 9)

Hi,
Thanks for posting this I will make sure I fill in the form.
Interesting though reading the the report/statement. If I am correct in my maths (and most of the time I am not) it looks like this

by Paul Cooke (May 9)

Interestingly, public funding for Dasatinib is now agreed in Scotland, but NOT as yet the rest of the UK.
I think, in these post devolution days, we are going to see an increasing number of funding
Category: Uncategorised

Replies: 4

Last updated: 10 May 2007
sandy craine on 9 May 2007

Category: Uncategorised

Replies: 2

Last updated: 9 May 2007

Dasatinib Effective Against Imatinib-Resistant Leukemia
by sandy craine (May 9)

hi craig,

please read my comments about this on my post about SMC.

i believe we should all act now and fill in the NICE online topic suggestion form 'en masse' maybe they would notice

by arrowsc (May 9)

Hi Sandy, this is a great result, but I am really concerned that we ( in England ) will have a battle to get it if required, having looked at previous posts and having just seen an article in the

by sandy craine (May 9)

Dasatinib Effective Against Imatinib-Resistant Leukemia

NEW YORK (Reuters Health) May 01 - The kinase inhibitor dasatinib induces complete responses in patients with imatinib-resistant or
Category: Uncategorised

Replies: 2

Last updated: 9 May 2007