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Smurf42 on 21 November 2014

Category: Side effects

Replies: 3

Last updated: 14 June 2015

Testosterone levels in male CML patients
by aseli100 (Jun 14)

If not yet solved the problem : as a cml patient used Testosterone suplamentation due to hypogonadism resulted most probably from treatment . it works! you may get plenty of information by joining

by Smurf42 (Dec 15)

Thankyou Sandy
I'm finding it really difficult to find answers but I will certainly investigate the adrenal fatigue information. Thankyou for your answer :-)

by sandy craine (Nov 23)

Supplementing with hormones -particularly with testosterone- is a difficult area to advise on as there are many effects (some quite scary) that can become an issue. I am sure long term TKi therapy

by Smurf42 (Nov 21)

Hi to all, I've joined this forum as the wife of someone who was diagnosed with CML nearly 6 years ago. I am interested to learn if there is anyone else out there who has suffered with a drop in
Category: Side effects

Replies: 3

Last updated: 14 June 2015
jeffcarroll34 on 20 November 2014

Category: Uncategorised

Replies: 4

Last updated: 21 November 2014

Major BCR/ABLl/ABLl (International Scale): 2.1% at Three Months
by sandy craine (Nov 21)

Hi Jeff,
Well done- looks like you are well within ELN recommendations for an optimal response at 3 months, < l0% BCR-ABL ..... Hopefully your doctor will tell you the same ;o)
Sandy

by Lucas (Nov 20)

so do the happy dance and celebrate. it was a very good result. under 10% IS at 3 months is considerer an optimal result. :)

by jeffcarroll34 (Nov 20)

Yes it is, I just had it emailed to me and haven't spoke to my doc about it.

by Lucas (Nov 20)

is this yours result? if it is, it was great for 3 months. it's an optimal response. congratulations. :)
Category: Uncategorised

Replies: 4

Last updated: 21 November 2014
wshi2001 on 20 November 2014

Category: Uncategorised

Replies: 9

Last updated: 29 April 2015

Low Platelets, low WBC, low RBC
by AnthonyI (Apr 29)

William -
May I ask how everything turned out with you low WBC situation?

by Lucas (Nov 24)

you're welcome, william. i just got my CBC. all "normal" (my normal): 3800 wbc, 87 K platelets (from 79K a month ago) and 13.8 HB. hope you can come back to the medication soon. cheers.

by wshi2001 (Nov 23)

Thanks Lucas and Dennis. By looking at fellow CMLer's posts, I discover that it is really up to the doctors to decide for individual cases, and possiblly every doctor has their own standard,

by Dennis (Nov 22)

If it helps at all, my platelets have been around 45-50 since I went on Glivec 12 years ago. Prior to Glivec, they were around 12-15 for 8 years. The Doctors told me then, that I would have to stop
Category: Uncategorised

Replies: 9

Last updated: 29 April 2015
sandy craine on 19 November 2014

Category: Uncategorised

Replies: 2

Last updated: 26 November 2014

drugs to be assessed at the next meeting of the national CDF panel – December 2014
by David Ryner (Nov 26)

Thanks Chris.
I just want to stress that treatment of chronic or accelerated phase CML using dasatinib will NOT be included in the re-evaluation exercise. Ponatinib will NOT be re-evaluated for

by cdw5000 (Nov 19)

And we're back to the dichotomy of high drug pricing funding the development of other drugs. I know the panel is looking at efficacy vs cost vs additional quality time, but it all comes down to

by sandy craine (Nov 19)

The following list of drugs, which are currently on the CDF list, will be re-evaluated at the next meeting of the national CDF panel on 15 and 16 December 2014. The re-evaluation of existing drugs,
Category: Uncategorised

Replies: 2

Last updated: 26 November 2014
JohnnyBoy on 17 November 2014

Category: Uncategorised

Replies: 7

Last updated: 19 November 2014

SCT next February or March
by JohnnyBoy (Nov 19)

Hello Sandy,
This is great news! I'll get on the phone to my consultant tomorrow to see if I can give Ponatinib a try during the wait. Who knows, perhaps this could be the TKI for me!

by sandy craine (Nov 19)

Hi Johnny,
Last Wednesday there was a meeting in Cardiff of the All Wales Medicines Strategy Group (AWMSG) which discussed ponatinib for use in:
‘..the treatment of adult patients with: chronic

by sandy craine (Nov 18)

See my transplant diary here

http://caringbridgeclassic.org/europe/sandycraine/
Sandy

by JohnnyBoy (Nov 17)

The mutation test was negative, so the head of the transplant team in Cardiff recommended a SCT. What can I expect after the procedure? I'm thinking of going for a mini transplant as the risks of
Category: Uncategorised

Replies: 7

Last updated: 19 November 2014
DJ on 18 November 2014

Category: Uncategorised

Replies: 12

Last updated: 12 December 2014

Mom will be starting Tasigna and Allipurinol. Scared to daeath after reading the pamphlet?
by DJ (Dec 12)

Thank you Sandy, I am grateful she is covered. But we were just so shocked to see the price. I was not aware they were looking at privatizing your system - I hope for your sake they don't. Many

by DJ (Dec 12)

Thank you (and thank you also for taking the time to reply when you work a 50+ hour week!)

She hasn't had any nausea or headaches, thankfully. We did Thanksgiving a little early out of

by sandy craine (Dec 8)

DJ, this is probably quite a normal reaction- remember there will be quite a few white cells that are being knocked out so it will take some time for her body to adjust to that never mind the

by DJ (Dec 7)

SHe is a bit spacey and drugged on this. Is that normal and does it get better?
Category: Uncategorised

Replies: 12

Last updated: 12 December 2014
Smahmood on 16 November 2014

Category: Uncategorised

Replies: 7

Last updated: 6 December 2014

Stopping Glivec
by fehr (Dec 6)

Hi Sandy,

Not a great difference, as I said, and I am not concerned. However, it bucks the trend. That could be down to all sorts of things, including test error. I have seen that before

by sandy craine (Nov 26)

Hi John,

There is really very little difference between 0.091 and 0.076% for it to be considered a rise. When is your next test due?

Sandy

by fehr (Nov 25)

This from the thread Sandy linked to:

I had been taking Imatinib 400mg for six and a half years when I stopped because of particular side effects. My PCR results after the first year had

by Smahmood (Nov 19)

Hi Barry,
Thank you for the information and good luck with your PCRs over the next 6 months.
Regards
Shahid
Category: Uncategorised

Replies: 7

Last updated: 6 December 2014
Frenchguy on 12 November 2014

Category: Uncategorised

Replies: 1

Last updated: 12 November 2014

Big deception
by Lucas (Nov 12)

francis, your result was good! your pcr halved in 3 months. if you can't hold the side effects, ok, but you're doing very good on tasigna. i'll send you an e-mail. cheers!

by Frenchguy (Nov 12)

Hi everyone,
Today I had the result at 6 months and I am desappointed because I am only at 0.34% vs 0.68% at 3 months so I will ask to my onc to change TKI because I can't support the side effects
Category: Uncategorised

Replies: 1

Last updated: 12 November 2014
nigel on 12 November 2014

Category: Uncategorised

Replies: 8

Last updated: 26 November 2014

Cancer Drugs Fund to be restricted - says NHS - off BBC web site today
by nigel (Nov 26)

So Nigel, to clarify:

The 5 year 'guaranteed' dasatinib supply is for 5 years from last patient enrolled. Last person in was March 2013 therefore supply is guaranteed for all patients until

by RodM (Nov 26)

Did he come back to you on this?

by David Ryner (Nov 15)

Hi Nigel and Rod,
There are two quite distinct issues here.
The first concerns the Cancer Drugs Fund (CDF) and the re-evaluation of the 40+ drugs on the national CDF list which include dasatinib,

by nigel (Nov 13)

I will email Prof O'Brien and ask
Category: Uncategorised

Replies: 8

Last updated: 26 November 2014
Basil from RSA on 9 November 2014

Category: Uncategorised

Replies: 2

Last updated: 11 November 2014

Good news from South Africa.
by sandy craine (Nov 11)

Hi Basil,
thanks for the update on this forum. Many will be very heartened by your experience of stopping. If only we could find out why some people (like you) can successfully stop therapy without

by Lucas (Nov 10)

Congratulations, basil!!! great news!

by Basil from RSA (Nov 9)

Hi Sandy and all my fellow members of the CML club.

I have posted the news on our FaceBook forum but for those who do not follow it here goes.

I have just had my 6 monthly consultation
Category: Uncategorised

Replies: 2

Last updated: 11 November 2014
teddyb on 9 November 2014

Category: Uncategorised

Replies: 1

Last updated: 9 November 2014

ABT-199 + TKI = Hope?
by Lucas (Nov 9)

i saw this on LLS forum. it sounds very very promising. we need to know the toxicity, etc.. but i think scientists are in the right track :)

by teddyb (Nov 9)

https://ash.confex.com/ash/2014/webprogram/Paper72972.html
Does anyone know if trials on this will start anytime soon?
This seems VERY promising :)
Category: Uncategorised

Replies: 1

Last updated: 9 November 2014
On Fire on 7 November 2014

Category: Uncategorised

Replies: 3

Last updated: 10 November 2014

Pre-employment occupational health assessments for those with Chronic myeloid leukaemia
by Richard42 (Nov 10)

This is an interesting topic - when I was changing jobs a couple of years ago, I spoke to an employment lawyer friend of mine and his advice was not to mention my CML until the OH assessment came.

by karen (Nov 7)

I think it varies from work place to work place.
I have had three different jobs since diagnosis and i have used the disability tick box to get an interview. The only difficulty with that is

by skiinglaketahoe (Nov 7)

This is a very interesting question and one that bothers me. I work for the NHS and so could tick the disability box and guarantee an interview. We can't lie about our health but I haven't applied

by On Fire (Nov 7)

My wife has been recently diagnosed with Chronic myeloid leukaemia, has responded excellently to treatment and has been told by her consultant doctor that she probably has a normal life expectancy,
Category: Uncategorised

Replies: 3

Last updated: 10 November 2014
wshi2001 on 6 November 2014

Category: Uncategorised

Replies: 15

Last updated: 17 November 2014

Need help! Weight loss after one month of Imatinib
by David Fitz (Nov 17)

Hi again - I'm on a quarterly schedule now for bloods and annual for bone marrow. It's all pretty easy now, to be honest.

by Lucas (Nov 8)

Hi, william,
i had one bone marrow biopsy and 2 bone marrow aspirations (they don't get a piece of the bone in this one, so it's less painfull). in my first one i was 65% positive (at 3 months) and

by Lucas (Nov 8)

William, it's very hard in the beggining. i cried a lot - cancer was my worst nightmare - but i'm here now. much more positive. I was suboptimal on glivec (6% PCR and 40% marrow PH positive at 7

by wshi2001 (Nov 8)

hi, Lucas,

I guess I am a bit sensitive to any change at the moment, often wondering how the drug is doing now. I went through some of the posts, they are great success stories which are
Category: Uncategorised

Replies: 15

Last updated: 17 November 2014
daniellaw on 3 November 2014

Category: Uncategorised

Replies: 6

Last updated: 25 March 2015

EURO-SKI study
by sandy craine (Mar 25)

Hi Daniella,
Thanks for updating on your progress. I am sure you are very happy to be able to do the DESTINY protocol inspite of not being eligible for the study. Even though your data will not be

by daniellaw (Mar 21)

Hi everyone,
I posted back in November that I was looking into enrolling on the EUROSKI study after Prof Apperley at Hammersmith had suggested it at my check up. We also talked about the possibility

by sandy craine (Feb 9)

Hi Simon... this does seem so unfair. The trial inclusion criteria is always very strict- but in this (and Daniela's) case it seems a little churlish. Over time it might be that this particular

by Simon Clayson (Feb 7)

My wife has been looking forward to joining the DESTINY trial ever since it was first announced. She is treated in Birmingham and when that centre recently joined the trial, she was delighted that
Category: Uncategorised

Replies: 6

Last updated: 25 March 2015
david_a on 27 October 2014

Category: Uncategorised

Replies: 2

Last updated: 4 November 2014

PCR levels after stopping TKI's
by FOURthPLINTH (Nov 4)

Hi David,
It may interest you - I stopped taking tki`s almost 5 months ago.So far so good!
Read my post to Daniella [3Nov] re:EURO-SKI Study.
Sue.

by fehr (Nov 4)

Not quite relevant, but I had been taking Imatinib 400mg for six and a half years when I stopped because of particular side effects. My PCR results after the first year had settled to around 0.003

by david_a (Oct 27)

hello, is there anyone out there not on tkis with a stable (low) pcr level? You may have been on the STIM trial?

If so what is your pcr level and how long have you been off the tkis?
Category: Uncategorised

Replies: 2

Last updated: 4 November 2014
Frenchguy on 23 October 2014

Category: Uncategorised

Replies: 8

Last updated: 25 October 2014

Myelocytes
by sandy craine (Oct 25)

My understanding is that myelemia means the same as myelocytosis which is an overabundance of meylocytes in either the marrow or peripheral blood.

by Frenchguy (Oct 25)

Sorry for being a bit boring but I have got one last question. I watched an other time this blood test. In fact, it is myelemia at 0.03 and not myelocytes sorry to have made the confusion. In the

by Lucas (Oct 24)

Thanks, francis! my sokal score was pretty high too due the spleen size. now, put in your mind that the sokal score is from the interferon era (70's/80's). there's some research with imatinib and

by Frenchguy (Oct 24)

Thanks very much, It is clearer now, the body and blood languages are very very difficult to understand. The most difficult is that I can't ask to my onc because he is too busy and I am fed up with
Category: Uncategorised

Replies: 8

Last updated: 25 October 2014
Anonymous (not verified) on 17 October 2014

Category: Uncategorised

Replies: 1

Last updated: 18 October 2014

Eczema
by sandy craine (Oct 18)

Linda, as far as I am aware, this kind of skin rash is quite a common side effect from nilotinib. I think from what others have said that it resolves in most people if the drug is stopped for a

by Anonymous (Oct 17)

Hi I am on 400mg daily of Nilotonib, I started in Jan 2013. By May I had eczema on my legs. My consultant said it could possibly be

connected to the TKI. It settled down after using steroid
Category: Uncategorised

Replies: 1

Last updated: 18 October 2014
mal e-jones on 16 October 2014

Category: Uncategorised

Replies: 1

Last updated: 16 October 2014

high blood pressure from glivec
by Richard42 (Oct 16)

Hi there
thats really interesting - I've been having my blood pressure checked now I'm on a trial and it's higher than it ought to be especially as I exercise regularly and am not overweight. Will

by mal e-jones (Oct 16)

this is my first post, hope you are all doing well, I have been taking glivec for many years , I think I was one of the first in North Wales to do so, apart from two bouts of pancreatitis all has
Category: Uncategorised

Replies: 1

Last updated: 16 October 2014
YoungWithCML on 13 October 2014

Category: Uncategorised

Replies: 1

Last updated: 15 October 2014

OK - This is a tough one
by sandy craine (Oct 15)

From reading your post I am reminded that the US health system is not one that I would like to emulate and I am very glad that we have a national health system such as we have in the UK. You have

by YoungWithCML (Oct 13)

So I'm a 26 year old male who just got officially diagnosed in June of this year, 2014.
4 Years ago I got hurt in an auto accident (not my fault) and have been battling an insurance company for my
Category: Uncategorised

Replies: 1

Last updated: 15 October 2014
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