TKI Discontinuation Criteria Established in Updated NCCN Guidelines

Skeletal muscle toxicity associated with TKIs in CML patients

Falsified Iclusig / ponatinib traded globally

The e13a2 BCR-ABL1 Transcript Is Associated with Higher Rates of Molecular Recurrence after TFR attempts

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Lyndsey on 22 August 2011

Category: Uncategorised

Replies: 3

Last updated: 5 September 2011

Uk seminar in cardiff
by TheCoopers (Sep 5)

My husband (with CML) and I will certainly be attending, we live just outside Cardiff. I'll keep checking this site for when we can register/get more info.
Theresa Cooper

by chrissie (Aug 30)

I'm thinking of attending this, too, and will keep an eye on the site for further information,
Best to everyone,
Chrissie

by sandy craine (Aug 23)

Hi Lynn, I would encourage you to attend, especially as you are newly diagnosed.
I will update here on the forum as soon as I hear from the organisers in Cardiff about the final agenda and

by Lyndsey (Aug 22)

Hi

I was wondering if anyone could give me any information about the seminar on 12th November in cardiff. I am from Glasgow and would really like to attend but having to look at flights, train
Category: Uncategorised

Replies: 3

Last updated: 5 September 2011
Barbs on 19 August 2011

Category: Uncategorised

Replies: 1

Last updated: 19 August 2011

3rde PCR result
by sandy craine (Aug 19)

Hi Barb... I would agree with your doctor. As your result is from a much more sensitive machine it is not surprising that you have a slightly more positive ratio. I always try to remind myself that

by Barbs (Aug 19)

Just had 3rd PCR result since stopping Glivec - 0,003 positive. My doctor says not to worry because it was done on a more sensitive machine 140 953,6 BCR-ABL transcripts instead of 20 000 on usual
Category: Uncategorised

Replies: 1

Last updated: 19 August 2011
Des on 19 August 2011

Category: Uncategorised

Replies: 3

Last updated: 25 March 2014

there's an app for that!!!
by Thomaskk (Mar 25)

What is the latest on your off TKI journey . Very curious :)
Regards
Thomas

by sandy craine (Aug 19)

Hi Des... wonderful to read your update. I am amazed that your CML is under control without drug therapy- presumably it is being controlled by your own immune system! This is the only explanation

by Barbs (Aug 19)

Thanks for your post - I came off Glivec in may - just got 1st slight positive result back - 0 003.
Will get another PCR done before deciding what to do; Basil from South Africa was the same

by Des (Aug 19)

there's an app for the ipad, My CML Tracker, which is very informative and free to install. It comes from Novartis, so is easy to understand and credible. For those interested, its worth looking at
Category: Uncategorised

Replies: 3

Last updated: 25 March 2014
claudia on 18 August 2011

Category: Uncategorised

Replies: 7

Last updated: 6 September 2011

Dasatinib side effects
by michelle (Sep 6)

Hi,
I too moved from Imatanib to Dasatanib in June this year after being on Imatanib since Nov 03. I found the first 2 months very hard. I had awful joint pain and Acne, although it did not effect

by claudia (Aug 24)

Thank you for all the good info! Claudia

by marsy (Aug 21)

Hi Claudio,
I was diagnosed last August and went straight onto the Sprit 2 trial on Dasatinib. I was concerned about side effects and had a chat with my consultant about taking one tablet in the

by brassman (Aug 21)

I'm not sure it really matters what time of the day you take your meds.
I started off taking them before bed to try to avoid feeling nauseous, but found I would lie awake waiting to feel
Category: Uncategorised

Replies: 7

Last updated: 6 September 2011
sandy craine on 18 August 2011

Category: Uncategorised

Replies: 5

Last updated: 23 August 2011

Leukaemia (chronic myeloid) - Dastatinib, nilotinib, imatinib (intolerant, resistant) (including partial review of TA70): FAD
by David (Aug 23)

I have just made time to read the NICE decision in full together with all the submissions made by everyone who responded to the consultation.
I am truly horrified. This an unfair and flawed process

by sandy craine (Aug 18)

Appeals process is complex and as Richard says we are trying to decide how best we can do this. We can only appeal on the issue of 'process' ...we are not allowed to use any arguments

by Richard42 (Aug 18)

There are appeal routes and I know Sandy is looking at those. I don't know for sure if they will but I would not be surprised at all if BMS (who make dasatinib) appeal.
I think you

by Bhiru (Aug 18)

So what can we do now to appeal this decision? Are there formal appeal routes or it is just a case of continuing with letters to MPs?
I feel strongly about this, and am not prepared to
Category: Uncategorised

Replies: 5

Last updated: 23 August 2011
Steven D on 18 August 2011

Category: Uncategorised

Replies: 2

Last updated: 19 August 2011

7 Years today since DX
by Barbs (Aug 19)

Hi Steve,
isn't it funny how we remember exactly what happened on the day of dx word for word?
Am glad to hear you're still doing so well - what's a zero between friends?
XXX

by sandy craine (Aug 18)

Hi Steven,
no matter whether you do achieve another zero, and I hope you do, you are in a good place 7 years on. How fortunate we live in a time of true innovation in the treatment of CML.

by Steven D (Aug 18)

Its exactly 7 years to the day and time when I was telephoned by my GP to come to his surgery and to bring a bag as I was being admitted to hospital.
I asked why and he told me that I had to many
Category: Uncategorised

Replies: 2

Last updated: 19 August 2011
Anonymous (not verified) on 17 August 2011

Category: Uncategorised

Replies: 1

Last updated: 17 August 2011

Travel insurance to America
by Richard42 (Aug 17)

Hi
I have annual insurance with my credit card which covers me for everywhere - it's a fairly standard policy in terms of benefits and didn't cost any more once I had CML: the way the policy

by Anonymous (Aug 17)

Has anyone travelled to the USA recently?
Trying to find an insurer that won't rip me off.
Any help appreciated.
Thanks Linda
Category: Uncategorised

Replies: 1

Last updated: 17 August 2011
spence11 on 17 August 2011

Category: Uncategorised

Replies: 13

Last updated: 5 September 2011

Holiday
by johnh (Sep 5)

Hi Richard,
Thanks very much for the response. That is very helpful.
Best regards, John H

by Richard42 (Sep 2)

Hi John
In answer to your question about Glivec holidays, there are a few studies on adherence and its relationship to molecular response. Perhaps the best is the study by David Marin (

by johnh (Aug 30)

Hi Sandy,
Can you give me the references to the documented evidence that Glivec holidays are not desirable. I am just about to have my routine consultation with my consultant and I am hopeful that

by SwanValleySue (Aug 29)

Hi

My suggestions - keep your drugs in the blister packs.
I carry my drugs with hand luggage .
For security - I do the below.
Have my travel medical certificate signed by doctor.
Category: Uncategorised

Replies: 13

Last updated: 5 September 2011
EmChops on 16 August 2011

Category: Uncategorised

Replies: 5

Last updated: 17 August 2011

Has anyone tried counselling?
by EmChops (Aug 17)

thank you so much for your comments, so nice to not feel alone.
i mentioned to the clinical trial nurse today about councilling and she is trying to get something sorted for me.
I have had white

by Pennie (Aug 17)

Hello Emma
I think counselling is an excellent idea. When I was first diagnosed, (10 years ago almost) I had counselling for some time. It really helped to have

by sandy craine (Aug 17)

Dear Emma,
I think this is probably a very good idea. Talking with someone who is 'outside' of personal family and friends/collegues etc means that you can explore/discuss feelings and

by Olivia (Aug 17)

When I was first diagnosed (nearly 2 years ago) I had sleeping problems, and my GP gave me a few sleeping pills - I took them for about three nights and hated the feeling the following day -
Category: Uncategorised

Replies: 5

Last updated: 17 August 2011
Carol on 11 August 2011

Category: Uncategorised

Replies: 15

Last updated: 27 September 2011

Leukaemia Patient/Carer Support Meeting Hammersmith
by chrissbb (Sep 27)

Hello,
I would just like to thank all concerned on our recent visit to the Hammersmith Support group.
Me & Tammy, Sharon & Dave, Frank & Sandra and Julie & Andrew were all made

by Carol (Sep 1)

Hi Sue,
It will be lovely to see both you & your husband at our meeting on the 17th can you let me have your email adddress so we can reserve 2 places for you both if you aren't able to make

by EmChops (Aug 31)

Hi sue

It will be good to meet someone else and chat about the Churchill, I do not know any faces there yet so hopefully be able to swap notes! See you on the 17th

Emma x

by LizzieD (Aug 31)

I am hoping to come to the patient/career meeting with my husband. We have not been for a while so it will be good to catch up with everybody. I would like to meet Emma as we both go to
Category: Uncategorised

Replies: 15

Last updated: 27 September 2011
chrissie on 10 August 2011

Category: Uncategorised

Replies: 1

Last updated: 16 August 2011

Another letter from Earl Howe
by fehr (Aug 16)

My letter from the Earl Howe (via my MP) said:
"I would stress that NICE has not yet published its final guidance to the NHS. It currently expects to do so in September 2011.

by chrissie (Aug 10)

Hi All
My MP wrote to Earl Howe seeking further clarification of his somewhat obtuse letter. This letter of August 1st is another 2 pages of drivel so I will not bother typing it in total. However,
Category: Uncategorised

Replies: 1

Last updated: 16 August 2011
Lyndsey on 9 August 2011

Category: Uncategorised

Replies: 6

Last updated: 10 August 2011

Haemolytic response
by sandy craine (Aug 10)

Hi , welcome to this forum.
As Alastair has already said..you are well in line with the expected response in that you have achieved an HR within the first 4 weeks. So yes, be reassured

by Lyndsey (Aug 10)

I am treated in Glasgow. I'm still on weekly visits at the moment. Is the actual starting percentage very important? He said it can be anywhere from 50-200%.in the section of FAQ from what my

by Alastair C (Aug 9)

Yes, those are the numbers you need to be aware of - I've not come across the rather broad brush approach they've adopted before, but 0.01% is very much a target very many are familiar with

by Lyndsey (Aug 9)

Thank you I think I did ask a question regarding my percentage (as I had read people on the forum talk about it) and he said that they start everyone off at 100% and hope to get down to 0.01% is
Category: Uncategorised

Replies: 6

Last updated: 10 August 2011
ian hinley on 8 August 2011

Category: Uncategorised

Replies: 3

Last updated: 10 August 2011

A potential cure made from girders ?!?!
by sandy craine (Aug 10)

Thanks Ian... just read the links and it all looks pretty hopeful- as you say the bit about autophagy is really interesting re: cell proliferation/death etc. "In CML, BCR–ABL mimics

by ian hinley (Aug 9)

Agreed, in the article below it mentions the toxicity and dangers of hydroxychloroquine, still very interesting about autophagy and there is phase 2 trial on 400mg twice a day.
http

by sandy craine (Aug 9)

Interesting article- although I am surprised that the researchers did not mention that this drug is very powerful and can have quite serious side effects in some people.
So before anyone ask their

by ian hinley (Aug 8)

http://www.dailyrecord.co.uk/news/scottish-news/2011/08/08/scottish-university-reveals-new-drug-to-combat-leukaemia-and-it-s-found-in-irn-bru-86908-23328602/
Interesting news...
Category: Uncategorised

Replies: 3

Last updated: 10 August 2011
sandy craine on 8 August 2011

Category: Uncategorised

Replies: 2

Last updated: 9 August 2011

SMC says yes to nilotinib for first line use
by sandy craine (Aug 9)

hi Rchard... yes and I am assuming we might see something similar from NICE re nilotinib, although the appraisal was for second line use rather than in the SMC case for first line- the PAS offer

by Richard42 (Aug 9)

Interesting to see the guidance is contingent on and takes account of the patient access scheme offered by Novartis.

by sandy craine (Aug 8)

Newly diagnosed Scottish patients will be offered Tasigna (nilotinib) see below:
Sandy
Advice
Following a full submission:
nilotinib 150mg hard capsules (Tasigna®) is
Category: Uncategorised

Replies: 2

Last updated: 9 August 2011
Richard Wilday on 7 August 2011

Category: Uncategorised

Replies: 1

Last updated: 7 August 2011

Health trusts pay £1m to STOP patients getting expensive drugs
by sandy craine (Aug 7)

Very interesting piece! Thanks for posting it here Richard. I understand the the present government take a dim view of any public body (PCT) taking positions that are pro or against. If it is a

by Richard Wilday (Aug 7)

Interesting article in the Daily Mail on Friday showing that NICE is not the only problem.

www.dailymail.co.uk/news/article-2022965/Health-trusts-pay-1m-STOP-patients-getting-expensive
Category: Uncategorised

Replies: 1

Last updated: 7 August 2011
EmChops on 5 August 2011

Category: Uncategorised

Replies: 2

Last updated: 10 August 2011

BCR-ABL results and bloods still dropping
by EmChops (Aug 10)

Hi sandy
i am on 300mg twice a day.
There is talk of dropping it but will need to follow trial protocols so not sure what they will change it to.
Only time will tell
Em

by sandy craine (Aug 6)

Dear Emma,
I wondered if you are on 300mg x 2 day or 400mg x 2?
This is the recommendation for dosage of nilotinib:
For use in patients with newly diagnosed Philadelphia

by EmChops (Aug 5)

I am on Nilotanib as part of a clinical trial and have had a bumpy start. I had to stop treatment for 4 weeks as my platelets and neutrophils were very low. My 3 month results were therefore a
Category: Uncategorised

Replies: 2

Last updated: 10 August 2011
sandy craine on 5 August 2011

Category: Uncategorised

Replies: 7

Last updated: 6 August 2011

Dr Kantarjian interview
by sandy craine (Aug 6)

Dear Don,
Thanks for setting out your story here, I did't know Dr Kantarjian was your doctor. He is pretty impressive, I was especially impressed with his take on how clinicians like him might

by Don Adkins (Aug 6)

I am a living example how important 2nd generation TKIs are.
In June 2004 I was in Blast crisis after having failed Glivec miserably. I traveled to MD Anderson to get a transplant, if I wasn

by EmChops (Aug 5)

Just what i needed to hear.
Thanks Sandy
Emma x

by ni2i (Aug 5)

Thanks for this Sandy it has really cheered me up, just to hear the words "normal life expectancy" at the end is brill, i hope NICE will see this interview.
Thanks again
Naomii
Category: Uncategorised

Replies: 7

Last updated: 6 August 2011
david_a on 2 August 2011

Category: Uncategorised

Replies: 5

Last updated: 16 August 2011

How sensitive is a PCR test?
by fehr (Aug 16)

5 log reduction is 0.001% which represents five decimal places if not expressed as a percentage.. Hammersmith is the same as the South Africa quote.
John

by Basil from RSA (Aug 4)

The Lab that does my tests in South Africa reports my results down to 5 decimal places.
But what is important is to get a Zero reading. That is PCRU and that is what it is all about.
So

by david_a (Aug 3)

Thanks for your replies Alastair and Richard.
Im currently on 0.009% at St James's hospital in Leeds.
Best wishes.

by Richard42 (Aug 3)

PCR sensitivities vary from centre to centre, and there is a difference in the kinds of PCR that can be done. The basic test is RQ-PCR. My own tests, which are done at the Hammersmith so
Category: Uncategorised

Replies: 5

Last updated: 16 August 2011
sandy craine on 2 August 2011

Category: Uncategorised

Replies: 3

Last updated: 8 August 2011

FAD? NICE delay's again!
by Richard42 (Aug 8)

Hi Stella
In answer to your question, value based pricing is a new regime for pricing pharmaceuticals in the UK that is due to enter into force in about 2014. The idea is that the price of drugs

by stella (Aug 8)

Hi everyone,
My Mum got a reply from her MP in Epping, Eleanor Laing (Conservative). See below...

Thank you for your email regarding your daughter's treatment for Chronic Myeloid

by sandy craine (Aug 2)

Having outlined in my post above that the letters CMLSg have received from Earl Howe (one on behalf of Andrew Lansley) were more or less unhelpful and disinclined to answer specific points outlining

by sandy craine (Aug 2)

CMLSg was informed that we should expect the FAD at "some point" last week- this was the second time we were informed there was a delay this time owing to "staff shortages".
Category: Uncategorised

Replies: 3

Last updated: 8 August 2011
ruddoug09 on 1 August 2011

Category: Uncategorised

Replies: 2

Last updated: 2 August 2011

Getting there...
by Alastair C (Aug 2)

Hi Neil, congrats on your PCR progress, and on your fund-raising activities.
Having had 2 results trending down after the March upwards blip, I think its probably safe now to say that result was

by ruddoug09 (Aug 1)

And to prove CML doesn't have to stop us doing things we like, I've been voted Fundraiser of the month for Leukaemia & Lymphoma Research.
http://leukaemialymphomaresearch.org.uk/running/

by ruddoug09 (Aug 1)

Just rang my doc for my latest PCR result and so far so good, not sure if I am where I need to be after 9 months on Glivec 400mg, but I'm delighted so far.
Nov 11 - 71.8% (diagnosis)
Jan 11 - 9.
Category: Uncategorised

Replies: 2

Last updated: 2 August 2011