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cmljax on 23 February 2017

Category: Uncategorised

Replies: 3

Last updated: 24 February 2017

Direct communication with Members
by David Fitz (Feb 24)

Hi there,
Yes - this should be pretty easy, though it's a little hidden. We are going to try to work on improving this in the future when we make updates to the site.
To send a direct message to

by cmljax (Feb 23)

Thanks Sandy. Actually I was hoping to ask you to look at and comment on my post Skin Cancer 7 and counting. I want to know if you have heard of this type of outbreak associated with CML

by sandy craine (Feb 23)

Hi,
at the moment this is not possible but we will be working on this as a extra in the near future. If you wish to PM a particular member of this forum ... and they agree.... we can put you in

by cmljax (Feb 23)

I am new to this site and just wanted to know if there is a personal messenger capability that allows members to communicate directly with one another?? Thanks
Category: Uncategorised

Replies: 3

Last updated: 24 February 2017
Lucas on 18 February 2017

Category: Treating CML

Replies: 3

Last updated: 23 February 2017

some - good - news and reassurance
by sandy craine (Feb 23)

HI Lucas,
thanks for your positively uplifting post.... so glad you continue to have such a low PCR result -
my best wishes as always,
Sandy

by Lucas (Feb 20)

Hey, Martin!! Thanks for the kind words. I know that most of us wait for that big fat 0.1% to live life, but it doesn't have to be like that. Life is happens all the time. If you're feeling

by MartinZA (Feb 20)

Hi there Lucas

Muito obrigado for your excellent post and your reassuring advice. It's such good news that your PCR is now so low - I read all your posts about your problems with

by Lucas (Feb 18)

Hey, guys, hope everyone's fine.

I don't post here for a long time but i'm always reading the threads. This is a great group and i'm so greatful to have found cml support when
Category: Treating CML

Replies: 3

Last updated: 23 February 2017
DJ on 11 February 2017

Category: Side effects

Replies: 3

Last updated: 20 February 2017

What will happen if mom takes Tasigna 9 hours apart instead of 12?
by DJ (Feb 20)

Thanks you guys. She took it once and it about knocked her out - she's very sensitive to it - so she decided to go back to taking it before bed because it's so strong for her it's

by sandy craine (Feb 16)

Hi,
You should advise your mother that if she eats a meal within 1 hour of taking her nilotinib the she is risking an increase in the levels of nilotinib in her blood and therefore an increase in

by Ben K (Feb 13)

Hi,
I can't tell from your post if your mum wants to take her Tasigna always 9 hours apart or if she is just trying to adjust her dose times.
I recently travelled overseas and needed to adjust

by DJ (Feb 11)

She's trying to adjust her eating schedule in the evening. She is in remission now. She just took one (it's right before dinnertime) but says she is feeling dizzy.
Category: Side effects

Replies: 3

Last updated: 20 February 2017
David Ryner on 13 February 2017

Category: Treating CML

Replies: 1

Last updated: 20 February 2017

Update on the NICE evaluation of ponatinib
by David Ryner (Feb 20)

Following the publication of the NICE Appraisal Consultation Document (ACD) NHS England (NHSE) have now updated the National Cancer Drugs Fund (CDF) List to include ponatinib treatment for both

by David Ryner (Feb 13)

NICE have today published their Appraisal Consultation Document (ACD) on the evaluation of ponatinib. ACD publication is a significant milestone event in the evaluation process. The provisional
Category: Treating CML

Replies: 1

Last updated: 20 February 2017
SamLG on 18 February 2017

Category: Uncategorised

Replies: 2

Last updated: 18 February 2017

New to the forum, newly diagnosed and wanted to say hi
by SamLG (Feb 18)

Thanks Lucas :) Great to hear you're well, its so nice to see so many positive people on here, and thank you for the heads up on the meeting, i'll drop them a line

by Lucas (Feb 18)

Hi, sam. hope you're fine. My name is Lucas and i'm 35 - so, about your age. i was diagnosed almost 3 and a half years ago and i'm doing great. I know that there are some meet up in

by SamLG (Feb 18)

Hi all,
I'm a 34 year old female who was diagnosed three weeks ago following a routine blood test as I was having problems conceiving a child. So far I’ve been on imatinib for a few weeks
Category: Uncategorised

Replies: 2

Last updated: 18 February 2017
Basil from RSA on 17 February 2017

Category: Uncategorised

Replies: 0

Last updated: 17 February 2017

My good news from South Africa
by Basil from RSA (Feb 17)

Hi from South Africa,
It has been a while since I posted an update on my journey "living with CML"
Below is a screen shot of my PCR tests since inception of PCR testing in South
Category: Uncategorised

Replies: 0

Last updated: 17 February 2017
Bmstier on 9 February 2017

Category: Uncategorised

Replies: 2

Last updated: 16 February 2017

Pimples and itch
by sandy craine (Feb 16)

Hi, itching skin /rashes etc. is a common side effect of TKI therapy and can be successfully treated with a short course of hydrocortisone cream. I had an itching skin rash when I first took

by soniatc.denny (Feb 12)

hi im sonia im 61years and diagnosed with cml sept 2016, im on nilotinib 2 tabs twice daily. lots of side effects initially but feeling a lot better now.
currently i have spots and itcching i take

by Bmstier (Feb 9)

I was diagnosed with CML going on 4 years now. Have had various side effects over the years but manageable for the most part. After 4 years you would think side effects would have all
Category: Uncategorised

Replies: 2

Last updated: 16 February 2017
hyderabadindia on 15 February 2017

Category: Blood tests

Replies: 1

Last updated: 16 February 2017

12 MONTHS PCR TEST RESULTS
by sandy craine (Feb 16)

Thanks for the update... this looks like a good response with the added bonus of less side effects. Well done,
Sandy

by hyderabadindia (Feb 15)

HELLO MADAM,
RECENTLY WE ARE DONE WITH BCR-ABL TEST( ONE YEAR ) AND CBP TESTS...THE RESULTS ARE AS FOLLOWING

1.COMPLETE BLOOD
Category: Blood tests

Replies: 1

Last updated: 16 February 2017
Susan Cole on 11 February 2017

Category: Uncategorised

Replies: 1

Last updated: 16 February 2017

Very neutropenia
by sandy craine (Feb 16)

Hi Susan,
Sorry you are having a rotten time of it. Unfortunately this is the time of year that even those of us with a decent neutrophil count suffer from colds infections etc. I am surprised that

by Susan Cole (Feb 11)

I have been having very low blood counts using dasatinib. In the past 6 months I've gone from 100mg to 80mg to 50mg daily, to now off any since Jan. 10th. As of January 24 I have a virus w/
Category: Uncategorised

Replies: 1

Last updated: 16 February 2017
sg3 on 13 February 2017

Category: Side effects

Replies: 1

Last updated: 16 February 2017

Nilotinib side effects
by sandy craine (Feb 16)

I suggest your friend talks with his clinician as the side effects you describe seem to be quite severe. It may be that they do diminish over time as most side effects do.... however, if his quality

by sg3 (Feb 13)

My friend is on 800mg of nilotinib a day, since Jan 17. May-Dec 16 previously 400mg of Imatinib a day, but had to change as didn't reach 2nd stage remission.
He has a headache through the left
Category: Side effects

Replies: 1

Last updated: 16 February 2017
xdesireemartinez90 on 22 July 2016

Category: Side effects

Replies: 11

Last updated: 7 February 2017

6 year old with imatinib bone pain
by EvaH (Feb 7)

In case its ever useful there is a world specialist in CML based in Galway....Prof Micheal O Dwyer.

by Irishmammy (Oct 10)

Thanks David, it was a very useful discussion! i really appreciate you making the link.

by David Fitz (Oct 1)

If you don't get the answers you want on the dental front let me know. My sister is a paediatric dental consultant in Crumlin hospital and is much more clued up on CML than your average dental

by Irishmammy (Oct 1)

Janey Mac!
Thanks David for the tips.
It's still all a bit new to us, we were muddling through and trying to go on as normal even though it will never BE normal.
We have dental on Wednesday to
Category: Side effects

Replies: 11

Last updated: 7 February 2017
TheCoopers on 26 July 2016

Category: Uncategorised

Replies: 17

Last updated: 7 February 2017

Internal Eye Bleeds
by EvaH (Feb 7)

Longer update in case of interest:
http://www.cmlsupport.org.uk/thread/11339/update-my-eye-issues-and-side-...

by EvaH (Jan 19)

Update:
Now 20 days after I was almost clear, the vision in my left eye is worse than ever and not improving. I have been told I have bleeds in my right eye too but so far they have not been causing

by nigel (Jan 12)

Hi sorry to hear this. I saw a local optician who could not see the issue and so saw an eye specialist that was able, with better equipment to look at he back of the eye better. I had the repair to

by EvaH (Jan 12)

Urgh....am a bit scared now. I was told it was a bleed not a detachment but I do get that tired eye ache that you spoke of.

After a week of bed rest my eye was pretty much 100%, then I did
Category: Uncategorised

Replies: 17

Last updated: 7 February 2017
Tabitola on 6 June 2016

Category: Reproductive health

Replies: 18

Last updated: 7 February 2017

Mothering a child with CML
by EvaH (Feb 7)

Wonderful news!!

by Tabitola (Feb 6)

Hahahahahaha. Chrissie dear I'm having sleepless nights for sure but unfortunately can't enjoy them.

by Tabitola (Feb 6)

Thank you Sindy. She is my miracle baby.

by Tabitola (Feb 6)

Thank you dear. Her name is Wilmah. I can't get my eyes off her.
Category: Reproductive health

Replies: 18

Last updated: 7 February 2017
debjal on 3 February 2017

Category: Blood tests

Replies: 3

Last updated: 7 February 2017

PCR reporting
by chrissie (Feb 7)

My consultant asked me to talk to his genetics students (both BSc and MSc students) so they know
1) what they are testing in the lab belongs to an actual person and the importance of accurate

by sandy craine (Feb 4)

Hi, and many thanks for sharing this. I am amazed that someone would try to 'fob you off' with such a statement as 'you wouldn't understand the results'!.... and that this

by debjal (Feb 3)

After a few phone calls, it seems there is no change in reporting. Nurse has now rung me back and given me my results. Why or why do they treat patients like bloody idiots? All

by debjal (Feb 3)

Not sure if I have just been fobbed off by my local hospital. I usually ring up for my PCR results three weeks after they are done, and have always been given the result over the phone.
Category: Blood tests

Replies: 3

Last updated: 7 February 2017
Justyna on 1 February 2017

Category: Uncategorised

Replies: 2

Last updated: 2 February 2017

Improving immunity after a BMT
by Justyna (Feb 2)

Thank you Sandy. I knew about supplementation with vitamin C but vitamin D is a new one and I shall try it. Many thanks again.

by sandy craine (Feb 1)

Hi Justyna,
I also had a reduced intensity SCT but that was in 2003. I have had various upper respiratory tract infections over the years but fortunately not pneumonia. I currently have a heavy cold

by Justyna (Feb 1)

My husband had a reduced intensity BMT about 2.5 years ago. It went well but his immunity is worrying me as he was hospitalized twice last year with pneumonia first and another less serious chest
Category: Uncategorised

Replies: 2

Last updated: 2 February 2017
JackyWong on 25 January 2017

Category: Blood tests

Replies: 5

Last updated: 26 January 2017

A little bit worry about the qpcr result
by David Fitz (Jan 26)

Jacky,
You're doing great. It's already brilliant that you are keeping this close to your results. Too many people aren't savvy enough.
So, keep an eye on the PCR numbers but take

by JackyWong (Jan 26)

Thank you for your reply and hope your trail of stopping drug is successful. Sometimes, I have a dream for stopping drug when I reach 3 years pcru. But now... it may not be come true. I hope a cure

by JackyWong (Jan 26)

Thank you for your reply. Yes, it may have a lot of factors to affect the result. So I try to relax myself and don't think anymore.

by Richard42 (Jan 25)

Hi there
Your pcr still looks good to me.
For information, I was undetectable (0.000) from November 2009 until I went on the Destiny trial in April 2014. Since I've been on the trial (
Category: Blood tests

Replies: 5

Last updated: 26 January 2017
David Ryner on 10 July 2016

Category: Uncategorised

Replies: 2

Last updated: 25 January 2017

Provisional dates for the evaluation of ponatinib by NICE
by David Ryner (Jan 25)

I attended, with a patient being treated with ponatinib, the Committee meeting in Manchester for the NICE appraisal of ponatinib on the 18th of January.
Ponatinib is currently only accessible

by David Ryner (Aug 9)

NICE have sent us a package of documents as a first step in their appraisal of ponatinib which is part of the CDF Rapid Reconsideration programme. We intend to be participants and have already

by David Ryner (Jul 10)

NICE contacted us on Friday and have said that they are now able to start the evaluation process sometime in early August with the closing date for submissions by 'patient experts' being
Category: Uncategorised

Replies: 2

Last updated: 25 January 2017
madhug on 3 January 2017

Category: Children & young people

Replies: 3

Last updated: 19 January 2017

Newly diagnosed. Need advice
by EvaH (Jan 19)

I think Sandy has adressed your questions very well. I think vegetarian diet is a good idea for many reasons but not as a majic cure :)
I was dianosed 6 months ago in central africa, I returned to

by mihir (Jan 5)

Dear Madhu,

Sorry to hear about the diagnosis. Incidentally, I am also from India, diagnosed a little before you, and also began with Veenat (imatinib generic) 800 mg [which as I learnt is a

by sandy craine (Jan 4)

Hello Madhu and welcome,
I am sorry you have been diagnosed with CML at such a young age. We all experience the same sense of shock at diagnosis but it does help if you can talk with

by madhug (Jan 3)

hi
Category: Children & young people

Replies: 3

Last updated: 19 January 2017
teddyb on 6 December 2016

Category: Treating CML

Replies: 2

Last updated: 14 January 2017

Halving the TKI dose safe, cost effective in CML patients with stable remissions. Destiny.
by teddyb (Jan 14)

Thanks Sandy, i will read up on those.
Exiting times, i too am hoping of reducing the dosage at some point.
Bloodwork is good, pcr is low and stable, so i guess i am doing pretty well except for

by sandy craine (Dec 13)

Thanks for the links Teddyb, we have posted an abstract from ASH on this but this is a more detailed report and will be helpful to more people. I hope you are doing well.
Sandy

by teddyb (Dec 6)

Sorry if this has been posted before.

Here are some uplifting information from the Destiny trial.

http://www.mdedge.com/hematologynews/article/119417/cml/halving-tki-dose...
http://www
Category: Treating CML

Replies: 2

Last updated: 14 January 2017
Olivia on 11 January 2017

Category: Other conditions

Replies: 2

Last updated: 14 January 2017

Another use for nilotinib?
by Olivia (Jan 14)

Thanks for all that information, John. It seems that my husband (who has Parkinson's) won't be offered nilotinib any time soon, but it is good to know that so much research is going on

by johnw1001 (Jan 12)

Hi Olivia,
The potential use of a tki such as nilotinib for purposes other than CML refers to some research work being undertaken at Georgetown Medical Centre in USA .There was a small sample

by Olivia (Jan 11)

I have just got back from a talk about current research into Parkinson's Disease, where the speaker mentioned that nilotinib is currently under discussion as a possible drug for use in its
Category: Other conditions

Replies: 2

Last updated: 14 January 2017