You are here

Forum

sandy craine on 16 December 2013

Category: Uncategorised

Replies: 2

Last updated: 1 February 2015

DESTINY trial is now OPEN!
by darley (Feb 1)

I'm on the trial.
Got to say though that whoever decided to call it "Destiny" needs a slap round the back of the head!
It makes me wonder at the thinking and mentality and mindset.
Dumb!

by chrissie (Nov 15)

DESTINY is now open in Exeter. I started on the lower IM dose last Monday- what joy as the tablets are so much smaller and therefore easier to swallow.
Best to all

Chrissie

by sandy craine (Dec 16)

At long last, the DESTINY study is now officially open, as of Friday. Liverpool Royal University Hospital (Prof. Richard Clark is the lead investigator of this UK study) seeing their first patients
Category: Uncategorised

Replies: 2

Last updated: 1 February 2015
Richard on 16 December 2013

Category: Uncategorised

Replies: 12

Last updated: 19 March 2014

Healthcare at Home
by darley (Mar 19)

They totally messed up my last prescription. They left it hanging around their office for days despite the fact they'd been told I was about out of supply.
Then when chased for it they discovered

by Richard (Dec 20)

My "missing" imatinib, delivered to wrong address, turned up today. I phoned HAH, and they have asked me to keep them until they collect them.
The main problem appears to be that, although the

by Pennie (Dec 19)

Evolution homecare company was adamant they had delivered my drugs to me at a time when there was nobody in the house all day!
Next day I was expecting the delivery and of course nothing arrived.

by Steven Davies (Dec 18)

I have just had a similar problem with EVOLUTION from the Hammersmith.

They took nearly 2 weeks to deliver and then when they did arrive I had 2 more deliveries on the next 2 days.

I
Category: Uncategorised

Replies: 12

Last updated: 19 March 2014
lloyd152 on 16 December 2013

Category: Uncategorised

Replies: 4

Last updated: 30 December 2013

A question for the ladies
by lloyd152 (Dec 30)

Thanks for your reply. It's really interesting that these problems occur as a result of treatment and nice to know I'm not alone! The coil is seeming like the best option for me too and hopefully my

by lloyd152 (Dec 30)

Hi Sandy,
Thank you so much for your comments.
It is good to know that others have experienced and thought about this issue and that I am not an isolated case. I have requested a referral to

by ece2108 (Dec 28)

Hello, I found last august out that I had CML and started with nilotinib. I'm a 38 old women and as you, I had a very heavy menstruation and also very irregular. I also took some iron supplements

by sandy craine (Dec 18)

Hi Clare,
Your story is not unusual I fear. I do know that as least one expert CML clinician (Prof. Jane Applerley of Imperial College Hammersmith Hospital) is very aware that the adverse menstrual
Category: Uncategorised

Replies: 4

Last updated: 30 December 2013
Olivia on 12 December 2013

Category: Uncategorised

Replies: 1

Last updated: 15 December 2013

CML in novels
by karen (Dec 15)

I remember reading that and smiling. I think with most novels they tend to just put leukaemia rather than pick anything specific as that way they don't have to research too much!
K

by Olivia (Dec 12)

Has anyone come across a reference to CML in a novel? I am reading "Port Mortuary" by Patricia Cornwell, and on p 307 the heroine, Kay Scarpetta, remembers her father's death from CML, which
Category: Uncategorised

Replies: 1

Last updated: 15 December 2013
ece2108 on 12 December 2013

Category: Uncategorised

Replies: 2

Last updated: 15 December 2013

After 3 month on TASIGNA
by karen (Dec 15)

Just wanted to say that is an excellent result and you should be really pleased. Hopefully it will continue that way and you may (in the future) get to stop taking it all together
K

by sandy craine (Dec 12)

Thanks so much for updating us all about your experience. Your story will certainly help any newly diagnosed patient have confidence in this kind of therapy.
Your response to nilotinib is certainly

by ece2108 (Dec 12)

Hello, I wrote 4 months ago about my new life with CML on this forum (thank you for your support). I was diagnosed in mid-august this year to have CML, a sickness I never heard of. 38 years old
Category: Uncategorised

Replies: 2

Last updated: 15 December 2013
HAYLEY88 on 9 December 2013

Category: Uncategorised

Replies: 2

Last updated: 10 December 2013

Co dydramol painkiller
by HAYLEY88 (Dec 10)

Sandy, Thank-you so much for the advise.

Regards

Hayley

by sandy craine (Dec 10)

Hi Hayley,

so sorry to hear your dad had such a potentially serious accident! Regarding you worries about the painkillers and potential contra-indication with his therapy. Ibuprofen is contra-

by HAYLEY88 (Dec 9)

Hi,
Can anybody advise me please?

My Dad was diagnosed in Nov 2010 and switched from imatinib to nilotinib which seems to be doing its job.

However he is still not at the target of 0.001
Category: Uncategorised

Replies: 2

Last updated: 10 December 2013
David Fitz on 5 December 2013

Category: Uncategorised

Replies: 2

Last updated: 7 December 2013

Slides from the patient day in Oxford
by David Fitz (Dec 7)

Thanks Sandy - much appreciated.

by sandy craine (Dec 5)

Hi David,

Prof. Clark said he would upload the slides as soon as possible. I think he is waiting until he has all the information regarding the DESTINY trial (i.e that it is open for

by David Fitz (Dec 5)

At the patient day in Oxford, I think I recall a mention that the slides would be made available to participants - but I haven't received an email or anything yet with details.
Had anyone received
Category: Uncategorised

Replies: 2

Last updated: 7 December 2013
sandy craine on 4 December 2013

Category: Uncategorised

Replies: 6

Last updated: 16 January 2014

Surviving CML
by marsy (Jan 16)

Hi Sandy,

I've not logged in for a while and just catching up on the posts. Many congratulations on hitting the 15 year mark. It's a real milestone and I'm sure you raised the odd glass over

by Dennis (Dec 16)

Really happy for you.
Don't often post these days, but I still read quite regularly. Thank you for all the hard work that you've put in over the years. This site helps people understand what the

by cdw5000 (Dec 15)

Sandy,
Congratulations on making 15 years and everything you have achieved both personally and with the wider campaigning and awareness for CML. 15 years is a tremendous achievement and here's to

by Olivia (Dec 5)

I would just like to add my congratulations and thanks for the wonderful work you do on this site, it has helped so many of us to come to terms with our common experience. Keep up the good work,
Category: Uncategorised

Replies: 6

Last updated: 16 January 2014
Gst on 29 November 2013

Category: Uncategorised

Replies: 3

Last updated: 5 December 2013

Last option
by Gst (Dec 5)

Thanks for you detailed replies. I will keep you updated with the test results of Dasatinib.
I feel a bit better I have been able to read more experiences from bloggers on this site.
Thanks
G

by karen (Dec 3)

Hello
The good news is you are being treated at a centre of excellence and the care you are getting will be second to none but I would push to try all the available drugs prior to going for a

by sandy craine (Dec 2)

Hello G,
There are a few points I would like to make.
According to the 2013 update of ELNet recommendations for optimal response to TKI therapy, your initial response to imatinib would have shown

by Gst (Nov 29)

Hello everyone
I just want to start by saying thank-you for this site and for everyone who posts as it has helped me since being diagnosed in Jan 2013. I am 35 years old and it came as shock to me
Category: Uncategorised

Replies: 3

Last updated: 5 December 2013
sandy craine on 19 November 2013

Category: Uncategorised

Replies: 2

Last updated: 22 November 2013

Safety and efficacy of imatinib cessation for CML patients with stable undetectable MRD: results from the TWISTER Study
by sandy craine (Nov 22)

Tony you can contact me on cmlsupportgroup@gmail.com
Sandy

by tony morgan (Nov 21)

Hi sandy,

Had your email address an gone and lost it.could you please email on Mr_Fireworks@hotmail.com thanks tony.

by sandy craine (Nov 19)

See our home page for a link to this article in Blood (ASH Journal) including the related article called TWIST it but don’t spin it! by Professor Jane Apperley of Imperial College, Hammersmith
Category: Uncategorised

Replies: 2

Last updated: 22 November 2013
kp on 17 November 2013

Category: Uncategorised

Replies: 10

Last updated: 17 March 2014

arthritis
by sandy craine (Mar 17)

Polyphenolics isolated from virgin coconut oil inhibits adjuvant induced arthritis in rats through antioxidant and anti-inflammatory action.
http://www.ncbi.nlm.nih.gov/pubmed/24613207?dopt=Abstract

by CanMakeLightofit (Mar 6)

Just to clarify things - what Stuart and Steve are describing is rheumatoid arthritis (RA). This has an autoimmune element in it (though that isn't the whole story) and is treated with drugs like

by Luisa (Feb 26)

I have been on Bosutinib for 4 months now and I am experiencing pain and stiffness at the base of my thumbs (both hands) and also at the base of my big toes,sometimes with a burning sensation. The

by RodM (Feb 26)

Hi - since starting Dasatinib, I've been having problems with my thumb's basal joint - which is the main joint where it joins the wrist. It was at a point where everything I did all day long was
Category: Uncategorised

Replies: 10

Last updated: 17 March 2014
Sarah Bo on 17 November 2013

Category: Uncategorised

Replies: 3

Last updated: 22 November 2013

Hammersmith Results
by sandy craine (Nov 22)

Hi Sarah... you are inline with an optimal response so you are doing well and within the less than 3 month ELNet recommendation..... i.e less that <10% BCR-ABL or less than <35% PH+ by

by Sarah Bo (Nov 17)

Hi Sandy,

Thanks for the response, I wasn't sure if I had misunderstood.

So if that is the case, my 30% results at 3 months may have actually been 9% and I was worrying about nothing

by sandy craine (Nov 17)

Hi Sarah, you are right.
I think Prof. Apperley mentioned that a result from Hammersmith is not reported on the IS, so you need to apply a conversion rate which for HH is 0.3(?).... I hope my memory

by Sarah Bo (Nov 17)

Hi,
Not sure if anybody can help with this question? At the CML patient day in Oxford this week Professor Jane Apperley briefly mentioned 'conversion rates' for PCR results received from the
Category: Uncategorised

Replies: 3

Last updated: 22 November 2013
Dennis on 16 November 2013

Category: Uncategorised

Replies: 1

Last updated: 18 November 2013

Cancer diversity threatens drugs
by cdw5000 (Nov 18)

We already know of a range of different 'types' of CML i.e. mutations - which affect some of us. At the patient day on 16 Nov, professor Jane Apperley showed a slide of approximately 25 different

by Dennis (Nov 16)

I don't know enough about this, so any comment I might make, would be guessing. Anyone else know how this relates to the CML drugs?
http://www.bbc.co.uk/news/health-24957089
Category: Uncategorised

Replies: 1

Last updated: 18 November 2013
stevebroom on 15 November 2013

Category: Uncategorised

Replies: 8

Last updated: 9 December 2013

CML centres in South Wales
by stevebroom (Dec 9)

Hi Theresa, Thanks for responding to my posting. My haematologist consultant tells me that the procedure is that I have to register with a GP when I arrive in wales who will then refer me to a

by TheCoopers (Dec 6)

Hi Steve, my husband has been receiving excellent treatment and support from Dr Chris Fegan of the University Hospital Cardiff (known locally as the Heath Hospital). We actually see him at another

by stevebroom (Nov 18)

Hi Sandy,

Thanks for that.

Steve

by sandy craine (Nov 18)

Hi Steve,
Yes I saw Janet's post regarding QE Birmingham, which is sound advice as they will also be a centre for DESTINY.

Just to confuse you, there is also Oxford and Dr. Adam Mead. I think
Category: Uncategorised

Replies: 8

Last updated: 9 December 2013
Basil from RSA on 13 November 2013

Category: Uncategorised

Replies: 3

Last updated: 14 November 2013

Report back on my CML status
by chrissie (Nov 14)

This is fantastic news, Basil and so many thanks for keeping us all posted. Your example has certainly given me, (and I'm sure many others on this site), hope that in time we can join you in TFR.

by Basil from RSA (Nov 14)

Thank for the kind words Sandy. My Haematologist could not refuse my request as I had gathered so much information from the internet regarding CML, especially the STIM Trials that were being

by sandy craine (Nov 14)

Dear Basil.... your story is a great example of what some of us think 'might' be the reason why some people who,thanks to treatment with one or other of the TKIs, have a sustained (at least 2years)

by Basil from RSA (Nov 13)

Hi all my fellow CML buddies,

I thought it would be of interest to those following my progress since stopping my TKI, Gleevec.

I took my last 400mg dose on 30 April 2009 after following
Category: Uncategorised

Replies: 3

Last updated: 14 November 2013
Luisa on 8 November 2013

Category: Uncategorised

Replies: 11

Last updated: 11 November 2013

bosutinib
by karen (Nov 11)

...you get there it would be good to say hi
K

by Luisa (Nov 11)

I hadn't really considered going. Oxford is quite a long way from York. I can't go the night before so I would have to travel on the day, setting off very early. I'll think about it

by karen (Nov 11)

...it seems to be going well - fingers crossed! Are you going to the conference on Sat?

K

by sandy craine (Nov 11)

Hi Luisa,
just to clarify why the data shows a high rate of discontinuation on bosutinib. During the initial trials a lot of patients experienced diarrhoea but instead of this effect being 'managed
Category: Uncategorised

Replies: 11

Last updated: 11 November 2013
EmChops on 7 November 2013

Category: Uncategorised

Replies: 6

Last updated: 14 November 2013

A decision I have to make about quality of life
by EmChops (Nov 14)

Thank you everyone for posting, your experiences have heartened (and saddened) me that I am not alone and there are options open that I need to explore further.

Chris I shall look out for you

by Pennie (Nov 9)

Hi Emma

There are know cognitive effects with Nilotinib for some people. Unfortunately I am one - I take an antidepressant called agomelatine, prescribed by CML consultant and the Psych dept

by skiinglaketahoe (Nov 8)

Hi Emma
So sorry to hear that you are feeling so low for whatever reason. I couldn't take either glivec or dasatanib and didn't want to even try nilotinib so I had a transplant. I had a variety of

by cdw5000 (Nov 8)

Emma,
I look forward to meeting you on the 16th as you and I have some similar nilotinib side effects. I'm about to make quite a big life change - tell you more face to face.
Chris
Category: Uncategorised

Replies: 6

Last updated: 14 November 2013
sandy craine on 7 November 2013

Category: Uncategorised

Replies: 1

Last updated: 11 November 2013

2013 CML Patient and Family Day - Oxford- approx 20 places left
by sandy craine (Nov 11)

For those who might be driving to Wolfson College for the UK patient day you should consider that Oxford is notoriously anti car.
According to the colleges website it is possible to park and ride

by sandy craine (Nov 7)

Currently there are just over 20 places left for the Oxford day. If you have not already registered or are still considering whether you should attend then you need to register and confirm your
Category: Uncategorised

Replies: 1

Last updated: 11 November 2013
Lydia on 4 November 2013

Category: Uncategorised

Replies: 5

Last updated: 7 November 2013

Reduced Dose Glivec - 300mg
by Lydia (Nov 7)

Well, thank you both Sandy and Alistair. I searched for Prof. Flanagan at Kings and actually came up with the very test you refer to and his contact details! I have written to him and we'll see what

by Alastair C (Nov 6)

Lydia glad to hear your husband is PCRU. I think the test is well worth doing as he may well have a high blood/serum level which would give him more than a therapeutic level in his system which may

by sandy craine (Nov 6)

Lydia,

Alistair advice is good and I agree that it would be a good first step - esp. given your husband does not want to change therapy -
For quite a few years now (since 2012 I think) we

by Lydia (Nov 5)

Hi Alistair,
Now, that's very interesting. Especially patients on the same dose not necessarily having the same level of drug in the bloodstream. That had not occurred to me before but everyone is
Category: Uncategorised

Replies: 5

Last updated: 7 November 2013
sandy craine on 4 November 2013

Category: Uncategorised

Replies: 1

Last updated: 4 November 2013

Doctors Fear Losing Leukemia Drug Deemed Risky
by sandy craine (Nov 4)

For those in the EU, the EMA is actively reviewing our proposed changes to the Iclusig label and we cannot comment or speculate as to whether the EMA will have different views compared to FDA.

by sandy craine (Nov 4)

Doctors Fear Losing Leukemia Drug Deemed Risky

By DENISE GRADY and ANDREW POLLACK

Published: November 1, 2013
People with fatal diseases may be willing to try risky treatments that have
Category: Uncategorised

Replies: 1

Last updated: 4 November 2013