You are here

Forum

Malikah on 31 July 2016

Category: Uncategorised

Replies: 2

Last updated: 13 August 2016

New to the group.
by Malikah (Aug 13)

Hi Sandy
Thank you for your response.
Firstly, I reside in Cape Town South Africa so unfortunately & regrettably will not be able to attend the CML Patient Day. I will look into finding

by sandy craine (Aug 2)

Hello Malikah, welcome to this group.
I must say that I have not come across extreme hair loss as a side effect of TKI therapy... at least to the extent that you indicate you have suffered. You said

by Malikah (Jul 31)

Hi All,
I came across this website while I was searching the net for information to combat the hair loss resulted from using Nilotinib. I decided to join the group. I have been living with CML for
Category: Uncategorised

Replies: 2

Last updated: 13 August 2016
alroder on 5 January 2016

Category: Reproductive health

Replies: 6

Last updated: 11 August 2016

Questions for newbie :)
by sandy craine (Aug 11)

Hi, Thank you so much for sharing your story which I am sure will reassure many Male patients who are contemplating fathering children whilst still on TKI therapy. Congratulations on the birth of

by Schlorf06 (Aug 11)

Good evening-- I just wanted to share my husbands and I's experience. He's had CML for almost 8 years and has been treated with Gleevec and now Sprycel. We have 4 healthy children. Our

by alroder (Jan 11)

Thanks for the insight. We actually spoke with our doctor about it too, and we are now in the process of some fertility testing to make sure everything is good to go before we start trying. As long

by MekaMa (Jan 7)

I think this is them being OVERLY cautious. While it is true that a man's sperm can be the cause of defects too we have to remember that in the world of sperm, it is survival of the fittest. if
Category: Reproductive health

Replies: 6

Last updated: 11 August 2016
chrissie on 6 August 2016

Category: Uncategorised

Replies: 0

Last updated: 6 August 2016

Walking for Bloodwise - Exeter area
by chrissie (Aug 6)

https://bloodwise.org.uk/event-challenges/walk-or-trek/south-west/exeter...
Best to all
Chrissie
Category: Uncategorised

Replies: 0

Last updated: 6 August 2016
Jadey on 3 August 2016

Category: Getting help

Replies: 5

Last updated: 4 August 2016

Pregnant while taking Glivec and scared!!
by sandy craine (Aug 4)

Hi Jadey,
I agree with everything that has been said... the danger with taking imatinib and pregnancy seems to be within the first trimester (3 months) which David has already pointed out. It

by nigel (Aug 3)

Hi Jadey, I have little to add other than to say I agree absolutely with all David has said. There are risks, and some potential large ones for you both, but the rewards can be great, as many have

by David Fitz (Aug 3)

Hi again,
While 8% at 5 months is nothing to worry about from a treatment response point of view for you, it's too high to stop taking TKIs for the length of a pregnancy I think. I was hoping

by Jadey (Aug 3)

Hi thankyou so much for replying. It was at 8% last month and I've had CML for 5 months now. The doctors over whelming me with the risks and so scared for me and the baby but I know that I'm
Category: Getting help

Replies: 5

Last updated: 4 August 2016
David Fitz on 4 August 2016

Category: Treating CML

Replies: 0

Last updated: 4 August 2016

Slides from CML Horizons conference 2016
by David Fitz (Aug 4)

Hi all,
Nigel Deekes and myself attended the CML Horizons conference in May this year, which was organised by CML Advocates.
The slides from each talk / presentation are available here.
I have notes
Category: Treating CML

Replies: 0

Last updated: 4 August 2016
Terri on 2 August 2016

Category: Uncategorised

Replies: 4

Last updated: 3 August 2016

Hi there
by Terri (Aug 3)

Thank you Chris
I will keep reading the leaflet, and we are asking for all her blood test results tomorrow so we can do a graph of such
It is encouraging for me to read the journeys of people

by cdw5000 (Aug 3)

Hi Terri,
Sandy's advice to read through the guide is very good advice and it will better arm you with the right questions to ask and, more importantly, understand the answers. I think the most

by Terri (Aug 2)

Hi Sandy
Thankyou for replying
Receiving treatment in Gloucestershire and is 23.
The graph we saw had a bottom line and a top line the top line was near the top of the graph and I asked what

by sandy craine (Aug 2)

Hi Terri,
just a few questions before I can offer you and your daughter advice.
How old is she?
Where is she being treated?
When you say 'after noticing a graph' do you mean that her doctor
Category: Uncategorised

Replies: 4

Last updated: 3 August 2016
nigel on 27 July 2016

Category: Uncategorised

Replies: 3

Last updated: 2 August 2016

Intersting little video from Novartis that may be good to share with Freinds, family or employers about your CML
by sandy craine (Aug 2)

Thanks Nigel,
we have had the first in this series on our video page since this time last year but I have added the others in the series including David's story. I am sure all of these will be

by MartinZA (Aug 2)

Thanks Nigel and David - these videos are great. At our school I am going to give a presentation about my leukaemia on International CML Day this year and I'm thrilled to have this easy-to

by David Fitz (Jul 27)

Hi Nigel -
I think that series of videos is really good. I hadn't seen the one you posted, but am familiar with the set of them.
Here's my story, as part of that series. It's a bit

by nigel (Jul 27)

Hope this is ok to share here, but been well received on Facebook, so thought I would share further. Nigel
https://www.youtube.com/playlist?list=PL6YfpI0VEjhvPGBH9jlkam4jEkPujnwiA
Category: Uncategorised

Replies: 3

Last updated: 2 August 2016
johnw1001 on 2 August 2016

Category: Organising your life

Replies: 0

Last updated: 2 August 2016

Are your TKIs insured against loss, theft etc
by johnw1001 (Aug 2)

Hi All
Have been meaning to rise this as an issue for some time but now house insurance is up for renewal will share my experiences.
For those of us who still receive our TKIs as a 3 monthly batch
Category: Organising your life

Replies: 0

Last updated: 2 August 2016
sandy craine on 3 June 2016

Category: Uncategorised

Replies: 2

Last updated: 7 September 2016

2016 UK CML PATIENT CONFERENCE
by David Ryner (Aug 1)

Hi Lynette,
I will check with the organisers but my guess is that it will not be available to the general public.

by Lynette (Jul 31)

Good morning Everybody! I can see from the info on the flyer that the patient conference shall be made available to everyone via webcast... will the practitioners conference also be available to

by sandy craine (Jun 3)

This years CML patient conference will be held at the Midland Hotel in Manchester on 24th September. The following link will take you to the website with all details of how to book etc.
http://www.
Category: Uncategorised

Replies: 2

Last updated: 7 September 2016
hyderabadindia on 27 July 2016

Category: Blood tests

Replies: 1

Last updated: 30 July 2016

RT-PCR results
by sandy craine (Jul 30)

Hi,
I might be that your wife's symptoms are because she is anaemic. Imatinib can suppress the red cells so it is often the case that the haemoglobin level (HGB) is a little low. If it is under

by hyderabadindia (Jul 27)

6 MONTHS RT-PCR for monitoring M-BCR/ABL1(p210)mrRNA transcripts
Dear Madam,
6th month RT-PCR RESULTS

BCR/ABL1 COPY NO
Category: Blood tests

Replies: 1

Last updated: 30 July 2016
GBear on 27 July 2016

Category: Side effects

Replies: 4

Last updated: 28 July 2016

Joint stiffness and bone pain after 5 years??
by GBear (Jul 28)

Thanks John, I will keep you posted if anything turns up! And thanks for your thoughts and info, it helps to know I'm not the only one feeling this way

by GBear (Jul 28)

Hi David,
Thanks for taking time to reply! I am 50 years old and have always been athletic and active up until May of this year when this problems started. It has gradually gotten worse in all of my

by David Fitz (Jul 27)

Hi,
I'm sorry for such a short message, but I'd prefer to reply quickly than not at all.
Some side effects of TKIs can come on late. For example, a pleural effusion can occur with a

by Parklife (Jul 27)

Hi
Sorry to hear about your joint stiffness and bone pain.
I have been on 4 TKI's since diagnosis in June 2013. Personally I started to experience joint stiffness approximately 7/8 month into
Category: Side effects

Replies: 4

Last updated: 28 July 2016
sandy craine on 14 July 2016

Category: Uncategorised

Replies: 10

Last updated: 26 July 2016

Please share your views on the following 2 Questions
by David Fitz (Jul 26)

Me too - you would be very lucky to have zero problems with a particular TKI, so sometime's better the devil you know!
David.

by cdw5000 (Jul 24)

Hi,
in a similar vein to other responses, once you're settled on a treatment that's working and the side effects are tolerable/manageable, why would you change TKIs?
i would only change TKI

by Parklife (Jul 21)

Hi Sandy and David.
Thanks for that. As I say I am more than willing to speak if I am wanted, just let me know.
Take care all.
Kind regards,

John

by sandy craine (Jul 21)

Thanks to all for your responses.... I will send them on to Prof. Copeland and will let you have her feedback regarding candidates for 'Patient Stories'.
Any other volunteers?
Sandy
Category: Uncategorised

Replies: 10

Last updated: 26 July 2016
Claire_71 on 25 July 2016

Category: Uncategorised

Replies: 2

Last updated: 25 July 2016

My blog...
by chrissie (Jul 25)

Hi Claire

My haem was so positive about CML he started his diagnosis to me over the phone with the word "Congratulations!". I found that very hopeful and, of course, over the past

by Olivia (Jul 25)

Hi Claire, welcome to the club - none of us expected or wanted to join, but it's not so bad for most of us! So many people here have offered help and advice, please keep asking if or when

by Claire_71 (Jul 25)

Hi, I've finally got some balls to write about my journey with CML. I've decided to blog about my cancer to hopefully help others through this journey and to raise awareness of blood cancers
Category: Uncategorised

Replies: 2

Last updated: 25 July 2016
V1ck1 on 21 July 2016

Category: Treating CML

Replies: 2

Last updated: 21 July 2016

BMT??
by darley (Jul 21)

* sticks hand up :)

by sandy craine (Jul 21)

Hi Vicky,
Yes, I think there are several of us on this forum. Nowadays it is quite rare to transplant for CML but there are people who either do not respond well to TKI therapy in general, or

by V1ck1 (Jul 21)

Has anyone in here had a bone marrow transplant?
Category: Treating CML

Replies: 2

Last updated: 21 July 2016
Lopaulpa on 14 July 2016

Category: About CML

Replies: 2

Last updated: 14 July 2016

Some tough news..
by Lopaulpa (Jul 14)

Hi Sandy, all blood work was beautiful while on Tasigna but the with the side effects it wasn't a life to be honest..
About other drugs, the doctors are meeting today to talk about all this and

by sandy craine (Jul 14)

I am sorry to hear you do not seem to be responding well enough to dasatinib. Have you asked your doctors why they think this is? Have they identified a dasatinib resistant mutation? I assume -

by Lopaulpa (Jul 14)

Hey again guys, I will introduce my self again. My name is Gudmundur and I am 29 yo from Iceland but currently living in DK with my girlfriend and 2yo daughter.
I had been on Gleevec and Tasigna for
Category: About CML

Replies: 2

Last updated: 14 July 2016
sandy craine on 11 July 2016

Category: Uncategorised

Replies: 1

Last updated: 14 July 2016

WalkforWards- The Blood Fund.
by sandy craine (Jul 14)

To all those who have donated to the WalkforWards event so far..... a message of thanks from Prof. Jane Apperley and the team at Imperial College NHS Trust, Hammersmith Hospital.
'On behalf of

by sandy craine (Jul 11)

The Blood Fund is a new departmental charity at Imperial College Healthcare NT, raising funds for the Department of Haematology. Monies raised will support a variety of projects aimed at improving
Category: Uncategorised

Replies: 1

Last updated: 14 July 2016
David Ryner on 10 July 2016

Category: Uncategorised

Replies: 0

Last updated: 10 July 2016

NHS England publishes details of their new process for evaluating and funding cancer drugs
by David Ryner (Jul 10)

Rather bizarrely for an area of activity with such high media visibility, NHS England (NHSE) did not put out, as they usually do, a media release in its news section of the website. Instead a very
Category: Uncategorised

Replies: 0

Last updated: 10 July 2016
sandy craine on 7 July 2016

Category: Treating CML

Replies: 3

Last updated: 9 July 2016

Positive recommendation of bosutinib (Bosulif) from NICE CDF Rapid Reconsideration
by chrissie (Jul 9)

Hi David and Sandy
Thank you very much for all you have done and great news on the NICE decision. It feels safer to have more options on the meds. front. I certainly feel happier to now there

by sandy craine (Jul 8)

Hi Nigel,
I have now fixed the link to the NICE press release- and yes, for the moment it is only available through the CDF until the FAD is implemented which I think is within 90 days? -
see

by nigel (Jul 7)

Hi David, that is very good news, thank you for the update, and all you have done, along with our patient representative in getting the rapid review through, and with a positive outcome.

by sandy craine (Jul 7)

We are very pleased that the outcome of the NICE Cancer Drugs Fund Rapid Reconsideration of bosutinib has resulted in a positive recommendation for its routine use in the NHSE in England for all the
Category: Treating CML

Replies: 3

Last updated: 9 July 2016
leelanarasimha on 17 June 2016

Category: About CML

Replies: 4

Last updated: 3 July 2016

Recently diagnosed with CML
by hyderabadindia (Jul 3)

Hi leela narsimha,
i am from hyderabad(India). my wife also recenly(Jan- 20-2016) diagnised CML., her medication Levin 400mg (imatinib mesylate). If you living in india this medicine cost

by shawn_143 (Jun 20)

Hi Leela,
Sorry to hear that, i am also recently diagnosed with CML like a Month before and i can understand what you are go through.
I am not an Expert or experienced guy to advice on this. But

by sandy craine (Jun 17)

Welcome Leela,
1. Is one year is sufficient or we should take the rest of life.?
Currently the situation is that the majority of patients (over 90%) diagnosed in chronic phase CML will respond

by darley (Jun 17)

Hi,
Welcome to the club nobody wanted to join. I was diagnosed with CML 22 years ago. So Keep Calm and Carry On :)
Veenat is the generic version of imatanib (also called glyvec or
Category: About CML

Replies: 4

Last updated: 3 July 2016
MartinZA on 2 July 2016

Category: Treating CML

Replies: 3

Last updated: 3 July 2016

ELN or NCCN?
by MartinZA (Jul 3)

Dear Sandy and David
Thank you so much for your quick response and for your kind and wise words. I have read so many of your replies to other CML patients and your words carry a great deal of

by David Fitz (Jul 2)

Hi Martin,
Sorry for the short message. I don't have time right now for a long one but wanted to reply.
I too take dasatinib. After almost 2 years from diagnosis I was above 1%. Another 18

by sandy craine (Jul 2)

Hi Martin,
I understand why you are disappointed but you should temper your disappointment with the knowledge that this is not an exact science - time of testing and consequent pcr result. PCR is

by MartinZA (Jul 2)

Hi everyone
I have just received my six-month results after being on dasatinib since December 4 2015 and I am hugely disappointed. BCR-ABL is only at 1.4% from 72% at diagnosis and only a small drop
Category: Treating CML

Replies: 3

Last updated: 3 July 2016