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Dennis on 10 March 2015

Category: Uncategorised

Replies: 2

Last updated: 17 March 2015

Holiday insurance
by Dennis (Mar 17)

Glad I posted on here now. I had no idea that cover for CML was available at such a reasonable cost. Thanks.

by Steven Davies (Mar 13)

World first insurance covers cml. At a reasonable rate

by Dennis (Mar 10)

Hi peeps, with it becoming increasingly difficult to get any travel insurance at all unless we're prepared to pay extortionate prices, I've been searching around for a company which will still
Category: Uncategorised

Replies: 2

Last updated: 17 March 2015
johnw1001 on 16 April 2015

Category: Uncategorised

Replies: 2

Last updated: 16 April 2015

Skin thinning and increased sensitivity to sun after prolonged use of TKIs
by chrissie (Apr 16)

I have found I burn really easily now in the sun - even under an umbrella. I avoid sitting in the sun now and use factor 50 if outside in sunny weather. I also seem to operate at a higher

by David Fitz (Apr 16)

Hi John,
I spent 20 minutes out in the sun yesterday afternoon. Whilst I did not burn badly, I did get a couple of "red face" comments at work today. I've never been the bronzed Adonis, but I do

by johnw1001 (Apr 16)

Hi Sandy,

Have been on Glivec/Imatinib for over 8 years and now have gained complete molecular response so we are having PCRs every six months now which is good news.

I have an issue
Category: Uncategorised

Replies: 2

Last updated: 16 April 2015
Stephanie K on 25 February 2015

Category: Uncategorised

Replies: 5

Last updated: 3 March 2015

Skin Infections whilst on Nilotinib
by Stephanie K (Mar 3)

Hi Pennie
Thank you so much for taking the time to respond to me and for sharing your experience. I too am very sorry to hear that you have suffered with the skin problems.
We are trying to get an

by sandy craine (Mar 1)

Hi Pennie, sorry to hear you too are having skin/rash problems from nilotinib- but glad to hear your pcr is undetectable- that is worth celebrating. Now you have so many zeros, could you try to

by Pennie (Feb 27)

Hello Stephanie, Sorry your husband has skin problems on Nilotinib, I have terrible issues. My treatment centre is Kings College hospital London, and they are on top of the issues, and I regularly

by Stephanie K (Feb 26)

Hi Sandy,
Thanks so much for your response. It is reassuring to know that we aren't on the wrong track to think that the drugs could possibly be effecting Ian.
His PCR is below 0.1 and very
Category: Uncategorised

Replies: 5

Last updated: 3 March 2015
nigel on 27 February 2015

Category: Treating CML

Replies: 8

Last updated: 28 May 2015

DESTINY Trial - Asked to join
by darley (May 28)

I've just reported on one of the others that I've just had my month 8 tests and all remains absolutely spot on perfect.
Positive is that I've not had any cramps at all for over 3 months now. They

by nigel (May 28)

Month 2 of DESTINY completed, result back today 0.006, lowest yet, realise it is the same as last month in effect, but still nice to see a tiny fall, and no increase after 2 months 1/2 dose. What

by chrissie (May 6)

A great result, Nigel. The same thing happened to me. For 5+ years I'd also been around 0.03 -0.07 and then my first result on DESTINY half dose Imatinib was 0.008 -the lowest ever. After a wee

by sandy craine (May 6)

Hi Nigel, well I bet you weren't expecting and extra zero on a reduced dose? amazing news- congratulations.
Sandy
Category: Treating CML

Replies: 8

Last updated: 28 May 2015
Parklife on 2 March 2015

Category: Uncategorised

Replies: 6

Last updated: 6 March 2015

Treatment break and PCR increase
by Parklife (Mar 6)

Hi Frenchguy/Sandy
Thanks for getting in touch and sorry to hear you too are experiencing pain. First of all, you are more than welcome to send me an email if you need to chat ever. I am sure Sandy

by sandy craine (Mar 6)

Hi John,

It is hard to find a credible reason for your side effects other than they were/are triggered by TKI therapy- i.e nilotinib- or at least some of them are directly caused by NI and

by Frenchguy (Mar 6)

When I read your posts since several days, I understood that I am not alone to suffer of these bizarre pains on nilotinib. I suffered from neck pains (burning senation, electric discharges),

by Parklife (Mar 5)

Hi Sandy and David.
Many thanks for taking the time go respond with your thoughts on this. I have showed my wife your posts and it has made her feel somewhat better.
I will keep you informed of my
Category: Uncategorised

Replies: 6

Last updated: 6 March 2015
sandy craine on 14 February 2015

Category: Treating CML

Replies: 13

Last updated: 27 May 2015

Question 1: How do you feel about generic imatinib being introduced after the patent expires in 2016?
by Simon Clayson (May 27)

I would expect any generic drugs that are available through official UK channels to have the same quality control as the original drug. As such my wife would be happy to take the generic version

by Richard42 (Feb 21)

It will be interesting to see what does happen with patients already on Glivec. Doctors in the UK prescribe generically ie they write down "imatinib 400mg", not "Glivec 400mg". All things being

by darley (Feb 20)

My concern is that the NHS is so dysfunctional when it comes to procurement and management. Also so wasteful. They're over complicated, bureaucratic. No-one takes responsibility. They're

by sandy craine (Feb 19)

Hi Nigel,
Yes, NICE review all their recommendations periodically- TKIs for CML in both first and second lines were reviewed last year (September 2014).

TA251-1st line and TA241-2nd line are
Category: Treating CML

Replies: 13

Last updated: 27 May 2015
sandy craine on 12 February 2015

Category: Uncategorised

Replies: 5

Last updated: 14 April 2015

Ashu-12 month result not good
by sandy craine (Apr 14)

Hi Ashu,

your result shows another log reduction than the previous one so..... you should really celebrate this drop in Bcr/Abl percentage. The result is very good and shows you are responding

by ashu1103 (Apr 14)

HI SANDY,

GOT MY 15 MONTH PCR 0.056 , WHICH IS COMPARATIVELY BETTER THAN MY 12 MONTH PCR WHICH WAS .32 .FEELING RELAXED ENOUGH. TOMORROW IS MY FIRST WEDDING ANNIVERSARY ,FEELING GOOD. COULD

by David Fitz (Feb 14)

Hi Ashu,
Have a look at this thread. I started it when I was worried my PCR wasn't coming down. 9 months after diagnosis I was at 0.5% and the next month it was 1.1%. 3 months after that it was just

by sandy craine (Feb 12)

I have put this post again in a new thread as the other one is getting a little long.
Ashu- David is right, your pcr 9 and 12 month pcr results are virtually the same.

On the molecular level
Category: Uncategorised

Replies: 5

Last updated: 14 April 2015
David Fitz on 11 February 2015

Category: Uncategorised

Replies: 3

Last updated: 15 February 2015

IS Conversion Factors
by Steven Davies (Feb 15)

The HH results are given on the front sheet as a IS level although the listings on your page of pcr results are on there own standard.

For the IS Standard for the Hammersmith the conversion

by David Fitz (Feb 12)

Thanks Sandy,
The results I get from HH are IS - I know that. I just don't get them done as frequently as those from Barts. That said, blood went over to HH just the other day so I should get a

by sandy craine (Feb 12)

Hi David,
You're absolutely right, you cannot convert to IS without the local lab (in this case Bart's) giving you their conversion factor. If I were you I would take the HH labs results- if they

by David Fitz (Feb 11)

Is there a list anywhere of IS conversion factors for different labs? I've been trying to find out the CF for my lab (Barts) since the results I get from there seem to be 'raw' (but might not be),
Category: Uncategorised

Replies: 3

Last updated: 15 February 2015
sandy craine on 10 February 2015

Category: Uncategorised

Replies: 2

Last updated: 12 February 2015

Axitinib Shown to Be Active in Resistant CML and B-ALL
by sandy craine (Feb 12)

Thanks David,

Thanks for the link to this article.
I think for resistant CML there is still a lot of work going on- this will no doubt benefit all of us in the longer run.
'.... By virtue of

by David Fitz (Feb 10)

I was just about to post a very similar article!
Here's the one I read:
http://www.news-medical.net/news/20150210/Researchers-identify-axitinib-...
It's very promising that there's still new

by sandy craine (Feb 10)

Axitinib (Inlyta, Pfizer Inc), already approved for the second-line treatment of advanced renal cell carcinoma (RCC), has surprisingly been shown to inhibit the BCR-ABL1 (T315I) mutation in cells of
Category: Uncategorised

Replies: 2

Last updated: 12 February 2015
sandy craine on 19 February 2015

Category: Uncategorised

Replies: 2

Last updated: 30 March 2015

Stacey-help please: reposted from previous thread on Male fertility and TKI therapy.
by Jacob (Mar 30)

I was diagnosed 11/01/2013. My wife and I had a 6 month old son at the time. After looking into the treatment, we noticed the warnings for preganency for males taking sprycel. We wanted more

by David Fitz (Feb 21)

Hi Stacey,
The link between dasatinib and pregnancy isn't that well understood. At the CML Patient conference here in the UK a couple of years ago, we had a seminar on fertility whilst on TKIs -

by sandy craine (Feb 19)

Submitted by stacbrown14 on Wed, 18/02/2015 - 21:51.

Hello my name is Stacey my husband has been on dasatinib for cml for 14 months he is 34 and I am 27 we were trying to get pregnant when he
Category: Uncategorised

Replies: 2

Last updated: 30 March 2015
Lucas on 3 February 2015

Category: Uncategorised

Replies: 4

Last updated: 4 February 2015

Pancreas and thyroid
by Lucas (Feb 4)

hi, sandy. i don't feel the symptons. i read an article that says that it could be temporary. i'll check it with a thyroid doctor. :)

by sandy craine (Feb 4)

Lucas... the STTM book/website covers both hyper and hypo as well as hashimoto's thyroiditis etc. - complex info explained well.

Do you have symptoms or feel that you may be hyperthyroid?

by Lucas (Feb 4)

thanks, sandy, but it seems i have hyper, not hipo. maybe it's transitory. let's wait :)

by sandy craine (Feb 4)

Hi Lucas,

you might be hypothyroid (thyroid giving out too low a level of hormones)- which I am sure happens to many.

You can read all about this condition as well as other related
Category: Uncategorised

Replies: 4

Last updated: 4 February 2015
Lucas on 4 February 2015

Category: Uncategorised

Replies: 9

Last updated: 1 March 2015

just over the moon! mmr!!
by sandy craine (Mar 1)

Thomas... congratulations on your optimal response, and thanks for updating us on this forum.

Sandy

by Thomaskk (Mar 1)

You are a hero Lucas.amazing results. I am also doing welL with 3rd month (.8 ) 6th month (.002) and one year ( 0.000) ..thank you all

by wshi2001 (Feb 23)

Congradulations, Lucas, I know it wasn't a easy journey for you, but you've made it. Keep going and you will get there.

William

by David Fitz (Feb 9)

That's amazing Lucas - well done. I know the road hasn't been easy for you. Really pleased to hear it!!
Category: Uncategorised

Replies: 9

Last updated: 1 March 2015
Lucas on 5 February 2015

Category: Uncategorised

Replies: 4

Last updated: 6 February 2015

another doubt
by Lucas (Feb 6)

hi sandy. as far i know, the problem is the degradation of the bcr-abl, that is much faster than the control gene, but i'm not sure. i'm not hopeless. it was just another little upset. i'm sure i'll

by sandy craine (Feb 6)

Hi Lucas... I am not sure if that is correct but it is too technical for me to comment as a lay person. I had understood that the reason why samples do not generate accurate results is because the

by Lucas (Feb 6)

thank you, sandy. i spoke with the lab and my doctors and both told me to retest. it's a shame i have to pass throught this situation again - second time my sample get late to the lab. there was

by sandy craine (Feb 6)

Hi Lucas... if the sample had been degraded because of time taken to test it then the lab would not have been able to generate much of a result. I understand why you might worry about his but
Category: Uncategorised

Replies: 4

Last updated: 6 February 2015
Lucas on 28 January 2015

Category: Uncategorised

Replies: 6

Last updated: 3 February 2015

finally CCyR!!
by ginger (Feb 3)

Hi Lucas,

Happy to read your good news. Yes, onto the zeroes.

Ginger

by darley (Feb 1)

Very good news for you. Let's hope this marks a turn and good health onwards.

by David Fitz (Jan 30)

Congratulations Lucas - I know you're had a tough year so this is amazing news. Really happy for you!!

by Lucas (Jan 29)

Thank you, on fire! Sandy, i'm very happy. actually i'm trying to figure out what it means to me!! Now i'm waiting for my pcr hoping for my first zero :) Thank you, sandy!
Category: Uncategorised

Replies: 6

Last updated: 3 February 2015
shafagh12 on 28 January 2015

Category: Uncategorised

Replies: 3

Last updated: 3 February 2015

Switching from imatinib to dasatinib or nilotinib after 19 months
by Lucas (Feb 3)

shafagh, you need to know if those numbers are in the international scale. if yes, then there's no reason to change treatment because your mother has a great response. good luck.

by sandy craine (Feb 3)

Hi Shafagh,
Your mother's pcr results are extremely good and appear very stable at 0.002% which is just below MR 4.5 (0.0032%/ 4.5 log reduction)- according to most experts a very good place to be,

by On Fire (Jan 28)

Yes it is possible to change from one treatment to another. From what I have gathered it seems that people suffer from side effects differently and some do not appear to suffer any side effects at

by shafagh12 (Jan 28)

Hi everybody.

My mother (54 years old) was diagnosed with CML about 19 months Ago and she is on imatinib 400.

PCR examination results:

13 months ago: 0.002

7 months ago: 0.
Category: Uncategorised

Replies: 3

Last updated: 3 February 2015
On Fire on 24 January 2015

Category: Uncategorised

Replies: 4

Last updated: 1 February 2015

Does stress effect the effectiveness of tyrosine-kinase inhibitors?
by darley (Feb 1)

20 years next month from diagnosis . Of course that was the early days when diagnosis was a death sentence and treatment was really tough!
I've had a matched unrelated bone marrow transplant

by RodM (Jan 29)

...I was dx in Feb 2012, in the middle of a difficult divorce process which went on over a year, large change in friendship circles, significant family issues, moved home twice within 2 years, spent

by On Fire (Jan 27)

Thank you for your response. I am 31 and do not want cml to define how I should live my life because the way I see it is that TKI have given me another chance in life. I will however do my best to

by cdw5000 (Jan 25)

Hello,
I'm in a similar position, but a little further down the line. I was pushing hard on the career ladder when diagnosed at 32 (4 years ago). I then pulled back a bit and took it slow for a few
Category: Uncategorised

Replies: 4

Last updated: 1 February 2015
Luisa on 18 March 2015

Category: Uncategorised

Replies: 3

Last updated: 3 May 2015

TKI and travel vaccinations
by Luisa (May 3)

Hi John,

thanks for your comment. Since posting my question about YF vaccine I had several conversations with the consultant in York and in Leeds. Initially they said that I "might" be able to

by johnw1001 (May 3)

Hi Luisa,

If you look at some of the drugs checkers such as Drugs.com it lists the interaction of Bosutinib (and all the other TKIs) with Yellow Fever Vaccine as being potentially severe.The

by David Fitz (Mar 19)

Hi Luisa,
There was a thread about this a few years ago, which will give you a bit more info:
http://www.cmlsupport.org.uk/node/6671
As far as it appears, the key things is that you have a good

by Luisa (Mar 18)

I'm planning a trip to South America later in the year to celebrate my 60th birthday - Peru and Ecuador including a few days in the Amazon and a high altitude trek.

Vaccination against yellow
Category: Uncategorised

Replies: 3

Last updated: 3 May 2015
Parklife on 17 January 2015

Category: Uncategorised

Replies: 7

Last updated: 16 February 2015

Treatment or not?
by johnh (Feb 16)

Hi John,
I don't know where you live but, if you can find someone like this locally, I would strongly recommend a look.

https://www.facebook.com/livelifethrive
I haven't experienced anything

by Parklife (Jan 27)

Hi William.
Thanks for posting your issues. Hope everything is going well with your treatment, joint issues aside.
I haven't, as far as I am aware, had a uric acid reading, although this maybe done

by wshi2001 (Jan 27)

hi, John,

I haven't been on the forum for a little while. At least not like what it used to be when

I was first dx 4 months ago, like you I am also considered as young (37). I just want

by Parklife (Jan 23)

Hi all.
I just wanted to first of all thank you Onfire, Sandy and David for being so kind to offer your two cents and most of all being compassionate about my current predicament.
I will give you
Category: Uncategorised

Replies: 7

Last updated: 16 February 2015
sandy craine on 22 January 2015

Category: Uncategorised

Replies: 1

Last updated: 22 January 2015

INTERIM Confirms 5-Year Efficacy of Intermittent Imatinib in CML
by sandy craine (Jan 22)

Despite the early termination of a phase III trial due to safety concerns, an analysis suggests that ponatinib offers improved efficacy over imatinib in patients with newly diagnosed chronic-phase

by sandy craine (Jan 22)

There has been substantial interest in intermittent or other alternative scheduling of tyrosine kinase inhibitors in treatment for CML. The success of the drugs has been remarkable, but because of
Category: Uncategorised

Replies: 1

Last updated: 22 January 2015
Steven Davies on 14 January 2015

Category: Uncategorised

Replies: 2

Last updated: 25 February 2015

Patient Carer support meting at the Hammerssmith Hospital, London on 28th February 2015
by Steven Davies (Feb 25)

Tonight is the last chance to reserve you please for the meeting.

by Steven Davies (Feb 3)

Hi just a quick note to let you know space are going quickly places are limited to reserve you place now..

by Steven Davies (Jan 14)

Patient Support Group Meeting at Hammersmith Hospital

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du Cane
Category: Uncategorised

Replies: 2

Last updated: 25 February 2015