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sandy craine on 13 October 2014

Category: Uncategorised

Replies: 1

Last updated: 13 October 2014

Patient/carer day
by Olivia (Oct 13)

First of all - what an excellent venue. It was the right size, and the spectacular views at lunchtime were a good contrast to the concentration of facts and opinions in the sessions.
The opening

by sandy craine (Oct 13)

Slides and videos are now uploaded. See link via post in red at top of page

Sandy
Category: Uncategorised

Replies: 1

Last updated: 13 October 2014
ypoulton on 13 October 2014

Category: Treating CML

Replies: 34

Last updated: 1 July 2015

Destiny trial
by darley (Jul 1)

:)
I asked when I was there today if they had a high level summary of how the people on the trial were doing so far.
Anyone else asked for that? Or got it?

by darley (May 28)

All remains well.
No cramps for 3 months now :)
Also my sense of smell and taste is most definitely returning :) Never expected that

by Richard42 (May 11)

Just an update - back to HH today for month 13 PCR result and still zero. So, officially stopping imatinib today. It is a sense of freedom tinged with slight apprehension since while I was

by darley (May 1)

So far, so good
Category: Treating CML

Replies: 34

Last updated: 1 July 2015
teddyb on 9 October 2014

Category: Uncategorised

Replies: 1

Last updated: 10 October 2014

Invalid url
by sandy craine (Oct 10)

Hi Teddy,
thanks so much for letting me know! I have now made the correct links and pathways so that you can access the pdf on CMLAdvocates.net website. They only share their info directly through

by teddyb (Oct 9)

Hello Sandy.
Just wanted to let you know, the url mentioned here does not work:
http://www.cmlsupport.org.uk/node/8558
Would be nice if you could update it to a working one :)
Teddy
Category: Uncategorised

Replies: 1

Last updated: 10 October 2014
Chad Chinavare on 7 October 2014

Category: Uncategorised

Replies: 2

Last updated: 7 October 2014

Depression with Gleevec?
by sandy craine (Oct 7)

Hi Chad,

I think that everything that Chris has suggested would help. As humans we are designed to move and even though it may be difficult to start with, if you try a little walking exercise

by cdw5000 (Oct 7)

Hello Chad,
It is possible Gleevec is causing or contributing to your symptoms. I suffered with some mild depression last year and it took some determined steps to improve my mental state. My advice

by Chad Chinavare (Oct 7)

Hello, I was diagnosed with CML in 2009 when I was 14. I have been on Gleevec (400 mg.) ever since. I am currently in remission and have been since 2011. Also, I am still on Gleevec(400 mg). Within
Category: Uncategorised

Replies: 2

Last updated: 7 October 2014
johnw1001 on 6 October 2014

Category: Uncategorised

Replies: 3

Last updated: 7 October 2014

Generic imatinib-risks and issues
by Richard42 (Oct 7)

Hi John
Personally, I have no concern about using a generic that has been approved by the FDA or EMA. They have to be bioequivalent, which means they achieve the same levels of active in the body

by Lucas (Oct 6)

Hi john,
I'm brazilian and here the public service uses generic imatinib. my doctor said that he believes that the medication is good, but there's not study about it. i've heard about a few cases of

by sandy craine (Oct 6)

Hi John,
I will be asking the CML clinicians who are attending the UK CML patient/carer day in Newcastle about this issue this coming Saturday.
Thanks for bringing the subject to our attention as

by johnw1001 (Oct 6)

It will be of interest to all of us as CML patients currently taking the branded version of imatinib namely Glivec that not so far into the future that it will be off patent and that generic
Category: Uncategorised

Replies: 3

Last updated: 7 October 2014
sandy craine on 3 October 2014

Category: Uncategorised

Replies: 8

Last updated: 13 October 2014

National UK CML Patient Day October 10th
by nigel (Oct 13)

Hi John Paul, Glad we had chance to talk, hopefully you will find higher does glucosamine helps, I believe it did me - Pre CML so maybe different, but hopefully not. Let us know how you get on.

by Parklife (Oct 12)

Thanks for the links, I am going to order some oil, even it stings like a Bee then it will be better than this constant ache, tingle and general soreness in the neck, shoulder and back I'm getting.

by sandy craine (Oct 12)

Hi.... yes it was a good day, in fact I found it to be one of the best meetings so far.

It was lovely to talk with you and your wife and I really hope you can resolve the joint pain you are

by Parklife (Oct 11)

Hi Sandy
Just wanted to say, it was great to meet you finally today at the CML day in Gateshead, your presentation was very good. Hope everyone enjoyed a sunny day on Tyneside. Hopefully everyone
Category: Uncategorised

Replies: 8

Last updated: 13 October 2014
Lienke SA on 30 September 2014

Category: Uncategorised

Replies: 2

Last updated: 1 October 2014

Indirubin (Indigofera tinctoria)
by Lienke SA (Oct 1)

Hi Sandy
Thank you for your comment and all your hard work!
I am responding well to treatment with MMR after 8 months of treatment, which I am extremely greatful for. However my Platelets are very

by sandy craine (Oct 1)

I have not heard of this particular herb as being specific for treatment of CML. Chinese Traditional Medicine (TCM) has a different approach to the current model of 'scientific' western medicine...

by Lienke SA (Sep 30)

Hi
I am 33years old. Diagnosed with cml 9 months ago. On Nilotinib.
Does anybody know anything about Indirubin (Indigofera tinctoria)?
I found the following on University of Maryland Medical
Category: Uncategorised

Replies: 2

Last updated: 1 October 2014
Lucas on 24 September 2014

Category: Uncategorised

Replies: 4

Last updated: 26 September 2014

trisomy in chromosome 8 ph-
by Lucas (Sep 26)

hi, ginger! thanks for the words. trisomy is another genetic alteration (i have three chromosomes 8). if the trisomy is on the leukemic cells then there's a clonal evolution (the leukemia is

by ginger (Sep 26)

Dear Lucas,

I read your posts all the time and am glad you have such a close relationship with your doctors. Good luck on Tasigna. I had never heard of trisomy. . .not sure if staying in the

by Lucas (Sep 25)

Thanks, sandy. My doctors aren't concerned about the trisomy (it was only in 10% of my cells) but they want to continue my close monitoring (i have cbcs every month and bmas every 3). I started

by sandy craine (Sep 25)

Hi Lucas,
from some brief research it seems that the T8 in PH neg cells is reported in patients treated with imatinib, in most cases it seems to be transient

http://www.ncbi.nlm.nih.gov/pubmed
Category: Uncategorised

Replies: 4

Last updated: 26 September 2014
MaryClaire on 23 September 2014

Category: Uncategorised

Replies: 2

Last updated: 25 September 2014

Newly diagnosed with CML
by sandy craine (Sep 25)

Welcome, I am glad you found you way here via our Facebook page. Gerry has already suggested how you might find support in Australia either via facebook group or via the Leukemia Foundation- http://

by Gerry (Sep 24)

Hi MaryClaire,

Just wanted to wish you luck with the Peg-Interferon, I'm not fond of needles and the self injecting would spin me out, but I guess people get used to it. I'd have to organise

by MaryClaire (Sep 23)

Hi

I'm MaryClaire and in the past two months I've been diagnosed with CML. I'm from Australia and have chosen to take part in a trial where I'm taking Nilotinib and in a month or so I'll also
Category: Uncategorised

Replies: 2

Last updated: 25 September 2014
sandy craine on 23 September 2014

Category: Uncategorised

Replies: 2

Last updated: 22 October 2014

Q RT-PCR: A Primer For Patients - online version
by ginger (Oct 22)

Dear Sandy and Sarah,

Thank you for making this available to us. Finally have a better understanding of those logs!

Ginger

by sandy craine (Sep 29)

For those who requested a printed copy of the q-PCR Primer for Patients, I hope you have now received it. for UK members of this forum, we have decided to waive the cost of P&P and will provide

by sandy craine (Sep 23)

Our designer has kindly produced an online version of the hard copy of the Primer. So for those of you like David who prefer to work towards being 'paperless' then you can now access it clicking on
Category: Uncategorised

Replies: 2

Last updated: 22 October 2014
sandy craine on 21 September 2014

Category: Uncategorised

Replies: 4

Last updated: 24 September 2014

22/09 World CML Day: Q RT-PCR: A Primer For Patients
by sandy craine (Sep 24)

Hi David,
Maybe this link (provided by our graphic designer) would be an easier way to download the PDF
www.withrelish.co.uk/cml/qrt-pcr-primer.pdf
Hope that works,

Sandy

by David Fitz (Sep 24)

Thanks Sandy,
For the benefit of those who'd like a PDF copy to save to their computer, e-reader or tablet, rather than rely on the web based view (which can be a bit tricky on the eyes and

by sandy craine (Sep 23)

Hi David,

Thanks so much for the offer, but there is no need for a donation- it was always meant to be freely available to all.
The graphic designer- who produced all the illustrations and

by David Fitz (Sep 22)

Hi Sandy -
I"m happy to make a donation towards the cost of production, but I'm a paperless kind of guy wherever possible so it would be great if the PDF was available to UK patients as well!
David
Category: Uncategorised

Replies: 4

Last updated: 24 September 2014
wshi2001 on 15 November 2014

Category: Uncategorised

Replies: 12

Last updated: 23 November 2014

Red pinpoint spots on skin
by ginger (Nov 23)

Dear William, Good, good luck with stopping the Imatinib for a week in hopes the spots diminish. I did have blood work when the spots appeared and my platelets were low/normal. I think my body

by wshi2001 (Nov 22)

hi, Ginger,

My latest blood test result is quite low refer to my new post(Low platelets,low WBC,low RBC). The red spots is mainly due to ultra low platelets. It doesn't disappear. I was told

by ginger (Nov 22)

Dear William,

Good luck with the blood test. I have taken off the jade bracelet which is such a lovely green color. What you wrote is a scary thought. And to think that jade is supposed to

by David Fitz (Nov 20)

The ones that were on my arms eventually went away about 90%. I get a lot on my legs too that have persisted, but since as a guy I don't wear skirts too often, it doesn't really bother me!
Category: Uncategorised

Replies: 12

Last updated: 23 November 2014
blueyes74 on 19 September 2014

Category: Uncategorised

Replies: 2

Last updated: 20 September 2014

I hit the big Zero
by skiinglaketahoe (Sep 20)

Hi, I am under the Royal Free for my CML. I have been extremely pleased with my treatment. UCH and Royal Free are linked in haematology and several of the consultants have clinics at both sites. UCH

by sandy craine (Sep 20)

Congratulations on your lovely zero's. Regarding getting to hammersmith- I live in east london (E!7) and still make the treck to HH. Driving there is a nightmare so now I get the tube to East Acton

by blueyes74 (Sep 19)

This week was my 5yr mark and I finally got the 0.000.

I currently go to North Middx hospital but am thinking of changing. They haven't got a clue there about any of the trials taking place
Category: Uncategorised

Replies: 2

Last updated: 20 September 2014
Lucas on 19 September 2014

Category: Blood tests

Replies: 9

Last updated: 3 June 2015

pcr < 10% and not in MCyR. is it possible?
by Mr Bill (Jun 3)

Sorry moved post

by Lucas (Oct 3)

unfortunately not many labs run pcr tests with this profile. i think i'll use this most sensitive lab for a long time. it's far from my city (3 hours by plane), but i think that's the only way i can

by sandy craine (Oct 3)

Lucas, you can safely ignore any result that has less than 10,000 copies of a control gene (BCR; ABL1 etc)
I am sure you will do well on tasigna-
Sandy

by Lucas (Oct 3)

Thanks, gerry! The paper you send me talk about pcr x cytogenetics at diagnosis. i don't know if we can apply this after DX. As you can see, all my results were less than 10%, even the test i had in
Category: Blood tests

Replies: 9

Last updated: 3 June 2015
Steven Davies on 18 September 2014

Category: Uncategorised

Replies: 1

Last updated: 5 November 2014

Hammersmith Patient/Carer support meeting Saturday 15th November 2014
by Steven Davies (Nov 5)

Just to let you know there are a couple of places left. Email me to confirm you place.

by Steven Davies (Sep 18)

Hammersmith Patient Support Meeting

Saturday 15th November – 10.30am/1.00pm
Patient waiting room

Catherine Lewis Centre

Hammersmith Hospital

DuCane Road

London W12 0HS
Category: Uncategorised

Replies: 1

Last updated: 5 November 2014
Luisa on 17 September 2014

Category: Uncategorised

Replies: 6

Last updated: 22 September 2014

Travel Insurance
by David Fitz (Sep 22)

Insurers suit themselves when it's in their interest. My medical insurer decided dasatinib was not a chemotherapy drug, because that would have meant they would have had to pay for it for me

by Dennis (Sep 21)

Because I looked into whether Glivec is a chemotherapy drug and the evidence that I got was that it is. I decided to go without cml cover for two reasons. Firstly that I think the chances of

by Luisa (Sep 19)

Thank you very much for the information. I applied and got my annual policy at a very reasonable price, £84, considerably cheaper in fact than the one with Medici travel. The medical screening was

by johnw1001 (Sep 19)

Hi Luisa

Have you tried "WorldFirst Travel Insurance"-google this to see their website

We used them a few years ago for annual cover for worldwide exc USA and the loadings for CML were
Category: Uncategorised

Replies: 6

Last updated: 22 September 2014
Smahmood on 15 September 2014

Category: Uncategorised

Replies: 1

Last updated: 16 September 2014

Hello Sandy
by sandy craine (Sep 16)

Hi Shahid,

I am not sure I will be able to help but I will do my best. contact me at cmlsupportgroup@gmail.com

Sandy

by Smahmood (Sep 15)

Hi Sandy,

I was wondering if it is possible for me to write to you privately regarding some issues I am facing at HH regarding my care.
Regards,
Shahid
Category: Uncategorised

Replies: 1

Last updated: 16 September 2014
Lucas on 15 September 2014

Category: Uncategorised

Replies: 4

Last updated: 20 September 2014

change in tki
by Lucas (Sep 20)

thanks, sandy. Here in brazil we only have 3 TKI avaible (imatinib, dasatinib and nilotinib). Some people aware me about OCT-1 levels in another forum and that nilotinib and dasatinib doesn't use

by sandy craine (Sep 16)

Hi Lucas,

plasma levels can be affected by the dose- i.e if you have a low trough level then you might respond better by an increased dose. But also- do read the article about OCT 1- high or

by Lucas (Sep 15)

Hi, sandy, thanks for the insight.
kariotype is my cytogenetic test. My intolerance is not a great problem, it's just moderate. i had 2 PCRs last month from 2 different labs and 2 differents machine

by sandy craine (Sep 15)

Hi Lucas,

You say this result is from a karyotype i.e a cytogenetic test...not a PCR test? I thought your PCR showed a molecular response so I am now confused.
You know you have no mutations
Category: Uncategorised

Replies: 4

Last updated: 20 September 2014
Mo on 15 September 2014

Category: Uncategorised

Replies: 2

Last updated: 17 September 2014

Nilotanib
by Lydia (Sep 17)

Thanks for your update. Really pleased to hear Nilotinib is keeping things under control. It has undoubtedly been a very worrying chapter in your CML journey.
Best wishes
Lydia

by sandy craine (Sep 15)

Hi Mo, thanks for sharing your really great news. The PCR result is great, even though you did not lose your molecular response on imatinib, nilotinib obviously suits you better- hopefully the side

by Mo (Sep 15)

Hi to you all, just an update , was on Imatanib for eleven yrs when it stopped working , was put on Nilotanib 2nd June at the time my P CR was 0.413%, went on 300mg per day but within three days I
Category: Uncategorised

Replies: 2

Last updated: 17 September 2014
chrissie on 9 September 2014

Category: Uncategorised

Replies: 5

Last updated: 16 September 2014

DESTINY - and Imatinib 200mg
by chrissie (Sep 16)

for your replies. Good to know it's not just me who finds the tablets rather large. I'll try your ideas.
Hope all is well with everyone

Chrissie

by fehr (Sep 16)

For several years, I have been taking 400mg as 200mg morning and evening. I split a 400mg tablet in half and softened the resulting sharp corners before swallowing. Spreading the dose reduced side

by teddyb (Sep 9)

Hello Chrissie.
I too, had problems swallowing the 400mg pill, so the first half year i dissolved it in water and drank. The i got the 100mg pills, and now i take 4 of them each morning. They are

by chrissie (Sep 9)

Many thanks for your reply, Richard. Hope you are doing well on the trial,
best

Chrissie
Category: Uncategorised

Replies: 5

Last updated: 16 September 2014