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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
Linda Corcoran on 9 May 2007

Category: Uncategorised

Replies: 16

Last updated: 14 August 2014

Glivec V Mini Transplant
by darley (Aug 14)

Believe me if a mini transplant is even a tenth as bad as a MUD transplant, it's going to make being on glivec seem like a walk in the park.
My transplant was 19 years ago. I didn't have the option

by Dom (Aug 13)

A big thanks to Chris and Sandy for keeping me right. I know we all have a great deal to be thankful for, and I know that over time I will re-adjust to the new reality. It has been really positive

by sandy craine (Aug 13)

Hi Dom and welcome,
Chris has more or less spelled it out very clearly... in the era of 5 TKis, transplantation for CML in chronic phase is indeed a last resort.
Being fit and healthy may help you '

by cdw5000 (Aug 13)

Hello Dom,
I'll offer some initial advice and I'm sure Sandy will be along to give her expert words of wisdom.
Unless you have a serious problem responding to the medication(s) then there is no
Category: Uncategorised

Replies: 16

Last updated: 14 August 2014
Swede on 8 May 2007

Category: Uncategorised

Replies: 2

Last updated: 10 May 2007

Steroids
by Paul Cooke (May 10)

Many people do take long term steroids for various conditions, but usually intermittent courses. Are you taking prednsiolone in varying doses every day? Or are you receiving regular 'courses' of the

by sandy craine (May 9)

i am not sure that long term steroid use is really desirable. if you still have the side effects that are so severe that you still need steroids after 12 months then i would suggest that you should

by Swede (May 8)

Hi

Just wondering if anyone else been on long term steroids in order to tolerate the side effects of Glivec? I’ve been on Glivec for nearly a year now and steroids for the same amount of time
Category: Uncategorised

Replies: 2

Last updated: 10 May 2007
Bill on 8 May 2007

Category: Uncategorised

Replies: 5

Last updated: 10 May 2007

What do I ask?
by zaviemiller (May 10)

Hi Bill and John,
You have both been diagnosed very early in the chronic phase of CML. It has been my experience that Gleevec works really well and very quickly for these patients. Hope to enroll

by Janet (May 8)

Hi Bill
Welcome to the club! I was diagnosed last September and asked the same question about centres of excellence a few weeks ago. The following is taken directly from Sandy's reply:
"certainly

by fehr (May 8)

Hi again Bill,
Three weeks on Glivec and wbc is down to 7.5. All other parameters in normal range.
Incidentally, back in the early 1970s, I was involved in developing and setting up exclusion

by Elizabeth Rees (May 8)

I support what John said above. There are other CML Centres across the country though, where do you live ? The Hammersmith is regarded as the best and the whole team there are excellent. The
Category: Uncategorised

Replies: 5

Last updated: 10 May 2007
technician69 on 7 May 2007

Category: Uncategorised

Replies: 31

Last updated: 7 June 2007

Daughter diagnosed with CML
by kestrel (Jun 7)

Hi Dawn,

Yes, he was sick the very first time he took it! After that he just felt nauseous and the hosp prescribed an anti-sickness drug called Ondansetron, which he took for a few weeks. He

by technician69 (Jun 7)

Hi Kathy, I am going to get Rebecca to take her tablets with her evening meal and see how that goes. She does not like spicy stuff any way so I don`t think that will be much of a problem. All she

by technician69 (Jun 7)

Hi Kathy I am going to try and get her to take them with her evening meal and see how that goes. She does not really like spicy stuff so I don`t think that will be a problem. All she wants at the

by kathy (Jun 7)

hi dawn,i used to take mine with breakfast but was always sick,tell rebecca to take them with her largest meal,and stay away from spicy food,if you or rebecca ever want a chat email me on kathy.
Category: Uncategorised

Replies: 31

Last updated: 7 June 2007
ivanbert on 6 May 2007

Category: Uncategorised

Replies: 1

Last updated: 9 May 2007

Liver Function Test
by Bill (May 9)

Hi,
I had a quick chat with my Onc/Hemo today and asked them about liver functions in relation to Glivec use. She said that sometime these will go up and normalise themselves. Gleevec works

by ivanbert (May 6)

Hello everyone,
I live in Perth Western Australia and have bee Dx since Dec 06. Since then all my FBCs have been normal, Im curretly awaiting the results of my first PCR test.(fingers crossed)
Category: Uncategorised

Replies: 1

Last updated: 9 May 2007
kathy on 6 May 2007

Category: Uncategorised

Replies: 5

Last updated: 5 July 2007

anemia
by suzzie (Jul 5)

Hi Kathy: I just wrote a post recently on Anemia. I am having the same problem, and I just wrote in about my Platelets. Everything is going low on me. I have a very good Oncologist/Hemotologist

by kathy (May 9)

paul,thank you so much for your reply,im gonna ring the doc today,thanks again,kathy

by Paul Cooke (May 9)

Hi Kathy,
When your Doctor told you about your anaemia, did they say what your Haemoglobin (Hb) level was?

This will determine whether you need it to be investigated further.

My wife (

by kathy (May 7)

Thanks for your reply but has anyone any ideas,thank u,kathy
Category: Uncategorised

Replies: 5

Last updated: 5 July 2007
David on 6 May 2007

Category: Uncategorised

Replies: 1

Last updated: 9 May 2007

Dasatinib Funding in the NHS
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

by David (May 6)

On 2 May below, I said I would post when I had a reply from NICE as to its attitude to Dasatinib. The reply I have received is as follows (with parts of it highlighted in bold by me):
"Many thanks
Category: Uncategorised

Replies: 1

Last updated: 9 May 2007
Mark Ostapiak on 3 May 2007

Category: Uncategorised

Replies: 2

Last updated: 6 May 2007

US CML support grop?
by Nancy C. (May 6)

Hi Mark,

There are very active US CML support groups. As mentioned above, to to www.newcmldrug.com and click on CML Talk. From this site you can find links to all the other cml support groups

by Steven D (May 4)

Dear Mark,
We are sorry that you had to find us. But you will be more than welcome to post here.
Ask any question and I am sure it will be answered. If you want any further information you can

by Mark Ostapiak (May 3)

Hello,
I was looking for a US CML support group (I was diagnosed with CML in June 2006), but couldn't find one. Is it OK if I post on this group?
Mark

29 yo male with CML
Category: Uncategorised

Replies: 2

Last updated: 6 May 2007
Bill on 3 May 2007

Category: Uncategorised

Replies: 7

Last updated: 22 April 2015

Jaw Pain
by kathy55 (Apr 22)

I am overwhelmed with the changes to my body since starting tasigna! My numbers are great, dr couldn't be happier...... me however just want to crawl in a hole and die. Lost most of my hair in the

by Janet (Jun 1)

Hi Diana
Bone marrow taken from your chest?? YOuch - that sounds like it was painful. My consultant goes digging about in the back of my hip when he does mine and manages not to hurt at all, which

by Diana Green (May 26)

Diana G
Sorry it's taken me so long to reply - only just found your message of May 8!!
Glad to hear you're doing well. I'm OK, thanks. The doc says the blood is clear, I had a bit of bone marrow

by Janet (May 8)

Hi Diana
Yes I'm doing fine thank you. Had a visit to the hospital last week when the consultant did another bone marrow, so I have been hopping a little less athletically when the cramp strikes
Category: Uncategorised

Replies: 7

Last updated: 22 April 2015
leslie chambers on 2 May 2007

Category: Uncategorised

Replies: 6

Last updated: 7 May 2007

First Time Posting
by Elizabeth Rees (May 7)

Hi Les

This is great news. I have had a lot of problem in the past with Glivec suppressing my marrow, I used to spend more time off than on.

Glad to hear that the counts are picking up

by leslie chambers (May 6)

Hello Elizabeth & Ivan,just to update,blood levels well up since stopping Imatinib,particually platelets,Hb 10.9. WBC 6.9. PLts 155.Apparently, before you are born,the spleen makes some blood,

by ivanbert (May 6)

Hi Les
As far as I am aware multiple 0.000s are very good results. (im hopefully going towards that magic number ) But I am with Elizabeth being very interested to hear about more about your other

by Elizabeth Rees (May 5)

Hi Les

You are an old timer and you've done really well. I was dx in Feb.99. Your PCR results are very good indeed with no sign of CML at all.

I find your situation somewhat confusing
Category: Uncategorised

Replies: 6

Last updated: 7 May 2007
Elizabeth Rees on 2 May 2007

Category: Uncategorised

Replies: 5

Last updated: 9 May 2007

Anyone having difficulty in getting PCT to fund Dasatinib/Sprycel ?
by Paul Cooke (May 9)

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:
400mg tablet pack 30 £1604.08
100mg tablet pack 60 £802.04

by sandy craine (May 4)

BMS UK have told me that dasatinib has a cost equivalent to 600mg of glivec. as most patients are given 800mg of glivec if they show signs of reistance then i cannot see how any pct can find grounds

by Elizabeth Rees (May 4)

Hi Keith

We are going to be back to the old campaigning days. First line lttr frm consultant to pct with letter from patient pointing out the costs implication and then make a lot of noise

by David (May 2)

Elizabeth
My understanding is that Dasatinib is less expensive than 800mg of Glivec and that patients on 800mg of Glivec should have no funding problem moving to a standard Dasatinib dose. However,
Category: Uncategorised

Replies: 5

Last updated: 9 May 2007
Elle on 1 May 2007

Category: Uncategorised

Replies: 2

Last updated: 4 May 2007

Dasatinib!!!
by Elle (May 4)

Hi Annie
Thanks for your reply. I've been writing it all down what i want to ask. I'll let you know how i get on.
Thanks
Elaine

by Annie Kennedy (May 1)

Elaine

Hope you get all the answers to your questions at your meeting - make sure you go armed with questions. I met Tessa Holyoake a few years ago when considering glivec/ transplant

by Elle (May 1)

Hi all
Just thought i'd let you all know i did not get started on Dasatinib last month. It has been decided that i go to Glasgow Royal to see Proff Holyoake. So i am going next week ( 10th ).
She
Category: Uncategorised

Replies: 2

Last updated: 4 May 2007
David on 26 April 2007

Category: Uncategorised

Replies: 7

Last updated: 6 April 2018

Headaches and extreme tiredness
by David (May 2)

Sandy - thank you very much.
David

by sandy craine (Apr 30)

dear David,

i can vouch for the homeopathic systems's power to help this form of headache. of course painkillers are purely palliative and the cause of the headaches is not addressed.

by David (Apr 29)

Pennie
Many thanks.
Kind regards
David

by Pennie (Apr 28)

Hi David and Val
Helios homeopathic pharmacy - 01892 537254 have a homeopath you can speak to over the phone. Perhaps the best way to find a local person is to contact the school of homeopathy in
Category: Uncategorised

Replies: 7

Last updated: 6 April 2018