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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
Lyndsey on 21 July 2011

Category: Uncategorised

Replies: 13

Last updated: 28 July 2011

Newly diagnosed
by Lyndsey (Jul 28)

Thank you so much for taking the time to reassure me. This site has been a life line to me and in a short space of time I have learned lots about cml. It truly is amazing that this drug has not been

by keith Pratt (Jul 28)

Hello Lyndsey
I agree, it sure it some sort of shock being dx with such a thing when you feel so fit and well. Same happened to me in 1996, I was training 10 hours a week in the gym, but still

by Olivia (Jul 27)

Hi Lyndsey
I was diagnosed nearly 2 years ago, and like yourself have had spells of doom & gloom - in spite of my consultant (in Edinburgh) saying "If I had to have leukaemia, this is the

by Lyndsey (Jul 21)

Thank you do much for reply this forum really has been helping especially after the last couple of days can't really pull myself out of this doom and gloom outlook. My consultant has been nothing
Category: Uncategorised

Replies: 13

Last updated: 28 July 2011
Basil from RSA on 23 July 2011

Category: Uncategorised

Replies: 3

Last updated: 27 July 2011

Still "undetectable"
by sandy craine (Jul 27)

HI Basil, Hi Barb,
Thanks to you both for your updates on your progress towards a 'cure'. It is particularly exciting to read about Basil's ongoing pcr's which even when

by Basil from RSA (Jul 24)

Hi Barbs,

I am very happy that you have decided to follow this path.

What is amazing in may case is that from a few positive results in-between, I have now had two PCRU's. Please let me

by Barbs (Jul 24)

I'm so happy for you Basil & I'm hoping to follow in your footsteps. I've had 2 negative PCR's since stopping my Glivec at the beginning of May - will be having my third test done on Thursday

by Basil from RSA (Jul 23)

Hi to all.

I just thought it important to let you know of my continuing good fortune.

I was diagnosed with CML in 2003. At first was put on Inteferon A but has to discontinue after a
Category: Uncategorised

Replies: 3

Last updated: 27 July 2011
Steven Davies on 22 July 2011

Category: Uncategorised

Replies: 1

Last updated: 24 July 2011

Disgusting people
by sandy craine (Jul 24)

hi

steven.... this is the worst attack of spam ever... i have just spent 3 hours deleting it all.. not the best way to end my holdiay ;o/
best,

Sandy

by Steven Davies (Jul 22)

What type of low life, crash this site as they have done and left sales messages over so many postings.
My suggestion is to to as I have done and leave a message on there website teliing them of
Category: Uncategorised

Replies: 1

Last updated: 24 July 2011
Diana Green on 17 July 2011

Category: Uncategorised

Replies: 3

Last updated: 19 July 2011

Can these aches and pains really be Glivec...five years in?
by fehr (Jul 19)

It may be that this has nothing to do with Glivec. It is likely to be spinal - the nerves feeding your legs run through the lower spine and wear can cause inflamation of the nerves and result in

by Diana Green (Jul 19)

Thanks very much for the tip, Stuart. I shall certainly try the juice. If it helps with all the other side effects too, it will be money well spent! I will report back.
Regards,
Diana

by Stuart Johnston (Jul 18)

in response to your side effects of glivec, i too was experiencing most that you described. i have been on glivec since may 2009.

whilst the effects were managable they are a bit of a

by Diana Green (Jul 17)

After nearly five years on Glivec I've started to get tiresome and debilitating aches and pains in my legs/lower back, and I wonder if this can be a new side effect after all this time.
I've always
Category: Uncategorised

Replies: 3

Last updated: 19 July 2011
ni2i on 14 July 2011

Category: Uncategorised

Replies: 6

Last updated: 19 July 2011

PCR result
by david_a (Jul 19)

Hi Naomii,

Well done! The drugs are working!

I think your results are good.

Just to give you an idea mine were as follows:-

diagnosed 55%

3 months 14%

6 months 0.

by ni2i (Jul 16)

Thank you everyone, i assumed it was good news but was a little unsure as i didn't know what rate was expected. You have all made me feel great.
Thanks again
Oh and good luck Emma with your biopsy

by tommy c (Jul 15)

sounds that all is going well, when i was dianosed 2007 prof clark at liverpool royal explained it like this, your around 100% at start of treatment at twelve months in you would want to be around 1

by EmChops (Jul 15)

i think that is good news.

I have just had my biopsy this week, will get results in 2 weeks, i hope mine look as good as yours!!

Well done

em x
Category: Uncategorised

Replies: 6

Last updated: 19 July 2011
chrissie on 13 July 2011

Category: Uncategorised

Replies: 4

Last updated: 23 August 2011

Uncomfortably tingling feet and hands
by chrissie (Aug 23)

Have now had my appt to have my nerve endings checked and, of course, the pins and needles had more or less stopped by the time the appt came through. All seems OK according to technician.
Also

by skiinglaketahoe (Jul 16)

Hi Chrissie
Electrophysiology tests are to do with nerve conduction tests, ie see how well the nerves are working. The reason for doing these tests is that rarely pins and needles can be assosciated

by chrissie (Jul 15)

Hi Susan
Thank you for your reply. I had a call from the hospital today to tell me I have an appt at the Electrophysiology Dept (whatever that is)to have a look at my feet. Goodness knows what they'

by skiinglaketahoe (Jul 14)

Hi Chrissie
Sorry to hear that you are suffering with pins and needles. I suffered very badly with this whilst I was on both glivec and dasatanib. Not only did I have pins and needles in my hands
Category: Uncategorised

Replies: 4

Last updated: 23 August 2011
chrissie on 27 July 2011

Category: Uncategorised

Replies: 5

Last updated: 16 August 2011

Imatanib and simvastatin
by fehr (Aug 16)

I am on imatinib 400mg. After a cholesterol test, on the instruction of an endocrinologist, I changed from Pravastatin 20mg to Simvastatin 40mg. I also made some modest

by Vangogh (Aug 5)

Hi
I was on Simvastatin when dx 3 years ago. Dr. Ho at Kings said that should I still need to take a statin I should change to Pravastatin as it was tolerated by Glivec. Luckily enough my

by chrissie (Aug 1)

Thank you for your replies, Sandy and Andy.
I still cannot believe how much better I feel now I've stopped taking simvastatin. One possible downside to stopping is that while digging around on

by Andy Parkin (Jul 31)

Chrissie,
I was taking simavastatin before being diagnosed with CML in Feb 2007. My cholestoral readings were high and hence the prescription for simavastatin. I was prescribed Imatinib for the CML
Category: Uncategorised

Replies: 5

Last updated: 16 August 2011