You are here

Forum

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
louisepim on 13 January 2015

Category: Uncategorised

Replies: 1

Last updated: 13 January 2015

Glivec/Imatinib
by sandy craine (Jan 13)

Louise,
Both imatinib (Glivec) and nilotinib (Tasigna) are 1st line TKI treatments for CML in England, Scotland and Wales. NICE approved both for use by the NHS for chronic phase CML.
The Cancer

by louisepim (Jan 13)

Hello, could someone clarify for me whether or not Glivec/Imatinib is funded by the Cancer Drugs Fund. If not, does being able to get it depend on which area of the UK one lives in or can one be
Category: Uncategorised

Replies: 1

Last updated: 13 January 2015
sandy craine on 8 January 2015

Category: Drug-drug interactions

Replies: 10

Last updated: 25 August 2015

Drug interactions with the tyrosine kinase inhibitors imatinib, dasatinib, and nilotinib
by MISSPH (Aug 25)

I have been on Gleevec for 3 years now.. lots of foods I liked before don't like now & vice versa. no Yogurt.. of course no Grapefruit. didn't like Mayo.. better now. anyone else have this. also

by Tim (Mar 9)

New to this site! CML since 2009 and now on Destiny. Anyone else have problems on medication with onion, onion powder, mustard? Rules out a lot of recipes!!!!

by ginger (Feb 8)

Thanks Sandy. I did cut it out but thought I'd put it back in.

Now I won't.

Ginger

by sandy craine (Feb 6)

I think to be on the safe side you might cut out the Soy milk.
Sandy
Category: Drug-drug interactions

Replies: 10

Last updated: 25 August 2015
On Fire on 6 January 2015

Category: Uncategorised

Replies: 2

Last updated: 7 January 2015

Bcr-abl results
by sandy craine (Jan 7)

Hi.... and many, many congratulations on a pretty spectacular result- one that is clearly well within the European Leukaemia Net and NCCN Guidelines for an optimal response. Getting anywhere near a

by chrissie (Jan 7)

Hi there
So pleased for you . What a great result after such a short time - a good New Year present! It does take time to come to terms with a CML diagnosis and yes, this forum and Sandy's expert

by On Fire (Jan 6)

Hi all
Well where can I start, I was diagnosed with CML in October 2014 late October and was put on Nilotinib soon afterwards. I am 31 years old and mother of one. At that time I thought this was it
Category: Uncategorised

Replies: 2

Last updated: 7 January 2015
sandy craine on 25 December 2014

Category: Uncategorised

Replies: 2

Last updated: 1 January 2015

Seasons Greetings
by Dennis (Jan 1)

Seasons best to you Sandy - and thanks for the wonderful job you do with this site.

by karen (Dec 25)

And to you Sandy and David.

Thank you again for such a great site

x

by sandy craine (Dec 25)

Wishing you all the very best for the coming New Year and a peaceful Xmas holiday.
Sandy
Category: Uncategorised

Replies: 2

Last updated: 1 January 2015
Steven Davies on 24 December 2014

Category: Uncategorised

Replies: 1

Last updated: 25 December 2014

24th December a day to remember.
by sandy craine (Dec 25)

Thanks for reminding us about the loss of Professor Goldman. He was one of the doctors that saved my life when I was diagnosed 16 years ago. Many still mourn his loss.
Sandy

by Steven Davies (Dec 24)

1 year ago today sadly Professor John Goldman passed away. A pioneer in CML and a great man who lived and breathed for a remedy for CML. Without his dedication CML survival rates would not be were
Category: Uncategorised

Replies: 1

Last updated: 25 December 2014
carmeplas on 28 December 2014

Category: Uncategorised

Replies: 3

Last updated: 6 January 2015

Dizziness and vertigo
by teddyb (Jan 6)

Hello, i feel dizzy some times myself, and its usually related to my tense shoulders. That is why i do physical therapy a few times pr month. (Massage and some exercises) This really helps for me.

by sandy craine (Jan 1)

Hi Carmen,

another link here to possible homeopathic treatment of vertigo- you might find it useful.
http://www.drhomeo.com/vertigo/vertigo/
Sandy

by David Ryner (Dec 31)

Hi Carmen,
I am not sure if this is relevant but there was an article in the DM about possible causes of dizziness- my parents told me about it and when I saw your post I looked it up. Ear infection

by carmeplas (Dec 28)

Dear All,
david is already 7 years and a half in Glivec, and he is doing still ok, however, recently he is experiencing some side-effects, mostly related to dizziness.

Last week, his heart
Category: Uncategorised

Replies: 3

Last updated: 6 January 2015
martin1960 on 11 December 2014

Category: Uncategorised

Replies: 5

Last updated: 16 December 2014

1 Year since diagnosis -Update
by Richard42 (Dec 16)

Hi Martin
In the early years (I've been on imatinib since 2009 - now on DESTINY at reduced dose) I often had nausea if I got the timing wrong. For me, taking the tablet about 15 mins to half an

by chrissie (Dec 16)

Hi Martin
Many congratulations on your excellent response.
With regard to nausea, I also take Imatinib and also suffered nausea for an hour after eating and taking my tablet. I have found that a

by Lucas (Dec 16)

Hi martin. Congratulations for the great results!
today it's my first year since diagnosis. like you, my response was not great for around 7 months (6% pcr at the time) but i had to change to

by sandy craine (Dec 14)

Hi Martin,

Well done, you have achieved a very good molecular response - 0.002%- within 12 months which is one of the recommended goals for optimal response according to ELNet guidelines:
Category: Uncategorised

Replies: 5

Last updated: 16 December 2014
sandy craine on 9 December 2014

Category: Uncategorised

Replies: 3

Last updated: 11 December 2014

Platelet Dysfunction linked to TKI therapy in CML
by sandy craine (Dec 11)

I am not sure Pat.... I will try to find out and let you know.
Best wishes to you and glad to hear you are still doing well,

sandy

by pat preston (Dec 10)

I realise platelet information comes in a full blood count, but I wondered if there was another way to diagnose platelet dysfunction information? Does the study just use platelet information to make

by pat preston (Dec 10)

Thank you for posting this study Sandy. I am wondering if there is, in fact, a way that one can find out if one has a platelet dysfunction? I have been on imatinib for 14 years - the last six at

by sandy craine (Dec 9)

December 7, 2014 – San Francisco, California – A high prevalence of platelet dysfunction has been demonstrated in patients with chronic myeloid leukemia (CML) receiving all types of tyrosine kinase
Category: Uncategorised

Replies: 3

Last updated: 11 December 2014
sandy craine on 6 December 2014

Category: Uncategorised

Replies: 8

Last updated: 9 December 2014

ASH 2014- CML Abstracts of interest
by teddyb (Dec 9)

Thank you for reply Sandy. Will be interesting to follow the progress of ABT-199. (And the other new agents on the horizon)
Edit: Glad to see the info on ABT-199 and PF-114 on the front page, both

by sandy craine (Dec 9)

There has been some interest in this via posts on this forum earlier this year- and as my mum has CLL I have been watching the results of the c/trials for CLL and it seems to be having some success

by Olivia (Dec 9)

I'm seeing him in January, and will discuss the possibility with him then. Thanks again, Sandy

by teddyb (Dec 9)

"512 Cooperative Targeting of Bcl - 2 Family Proteins by ABT - 199 (GDC - 0199) and Tyrosine Kinase Inhibitors to Eradicate Blast Crisis CML

and CML Stem/Progenitor Cells"
https://ash.confex.
Category: Uncategorised

Replies: 8

Last updated: 9 December 2014
nigel on 3 December 2014

Category: Uncategorised

Replies: 2

Last updated: 3 December 2014

3 year update
by cdw5000 (Dec 3)

Congrats on the result - an excellent outcome three years in. There will always be blips and none of us really know if that's the level of CML in our bodies moving up and down or 'noise' from

by sandy craine (Dec 3)

I can't believe its been 3 years Nigel! Well done on your steady progress down to a very comforting 0.04%. You are right to say that imatinib is a good drug- it has saved so many lives. Side effects

by nigel (Dec 3)

Hi all, three years in on Imatinib. Last PCR 0.04 June, last week 3 monthly hospital visit told no PCR result as now 6 monthly as stead PCR. Couple of blips, on the way. Imatinib may be a little
Category: Uncategorised

Replies: 2

Last updated: 3 December 2014
On Fire on 2 December 2014

Category: Uncategorised

Replies: 2

Last updated: 10 December 2014

Effectiveness of the TKI
by wshi2001 (Dec 10)

Congradulations, you reached normal blood count in just 2 months time. That shows the drug is working well for you. I too was dx not long ago (3 months). Just want to share my experience with you.

by sandy craine (Dec 3)

Hi,

the quick answer is yes, your medication is obviously working. You should expect to see your blood cell counts return to normal within the first 6- 8 weeks, then it is likely that you will

by On Fire (Dec 2)

Hi all 2 months since diagnosis and my heamological is now back to normal. The doctor said this was very quick. However my question is that, does this suggest that the medication is working? I'm
Category: Uncategorised

Replies: 2

Last updated: 10 December 2014