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Steven Davies on 18 September 2014

Category: Uncategorised

Replies: 1

Last updated: 5 November 2014

Hammersmith Patient/Carer support meeting Saturday 15th November 2014
by Steven Davies (Nov 5)

Just to let you know there are a couple of places left. Email me to confirm you place.

by Steven Davies (Sep 18)

Hammersmith Patient Support Meeting

Saturday 15th November – 10.30am/1.00pm
Patient waiting room

Catherine Lewis Centre

Hammersmith Hospital

DuCane Road

London W12 0HS
Category: Uncategorised

Replies: 1

Last updated: 5 November 2014
Luisa on 17 September 2014

Category: Uncategorised

Replies: 6

Last updated: 22 September 2014

Travel Insurance
by David Fitz (Sep 22)

Insurers suit themselves when it's in their interest. My medical insurer decided dasatinib was not a chemotherapy drug, because that would have meant they would have had to pay for it for me

by Dennis (Sep 21)

Because I looked into whether Glivec is a chemotherapy drug and the evidence that I got was that it is. I decided to go without cml cover for two reasons. Firstly that I think the chances of

by Luisa (Sep 19)

Thank you very much for the information. I applied and got my annual policy at a very reasonable price, £84, considerably cheaper in fact than the one with Medici travel. The medical screening was

by johnw1001 (Sep 19)

Hi Luisa

Have you tried "WorldFirst Travel Insurance"-google this to see their website

We used them a few years ago for annual cover for worldwide exc USA and the loadings for CML were
Category: Uncategorised

Replies: 6

Last updated: 22 September 2014
Smahmood on 15 September 2014

Category: Uncategorised

Replies: 1

Last updated: 16 September 2014

Hello Sandy
by sandy craine (Sep 16)

Hi Shahid,

I am not sure I will be able to help but I will do my best. contact me at cmlsupportgroup@gmail.com

Sandy

by Smahmood (Sep 15)

Hi Sandy,

I was wondering if it is possible for me to write to you privately regarding some issues I am facing at HH regarding my care.
Regards,
Shahid
Category: Uncategorised

Replies: 1

Last updated: 16 September 2014
Lucas on 15 September 2014

Category: Uncategorised

Replies: 4

Last updated: 20 September 2014

change in tki
by Lucas (Sep 20)

thanks, sandy. Here in brazil we only have 3 TKI avaible (imatinib, dasatinib and nilotinib). Some people aware me about OCT-1 levels in another forum and that nilotinib and dasatinib doesn't use

by sandy craine (Sep 16)

Hi Lucas,

plasma levels can be affected by the dose- i.e if you have a low trough level then you might respond better by an increased dose. But also- do read the article about OCT 1- high or

by Lucas (Sep 15)

Hi, sandy, thanks for the insight.
kariotype is my cytogenetic test. My intolerance is not a great problem, it's just moderate. i had 2 PCRs last month from 2 different labs and 2 differents machine

by sandy craine (Sep 15)

Hi Lucas,

You say this result is from a karyotype i.e a cytogenetic test...not a PCR test? I thought your PCR showed a molecular response so I am now confused.
You know you have no mutations
Category: Uncategorised

Replies: 4

Last updated: 20 September 2014
Mo on 15 September 2014

Category: Uncategorised

Replies: 2

Last updated: 17 September 2014

Nilotanib
by Lydia (Sep 17)

Thanks for your update. Really pleased to hear Nilotinib is keeping things under control. It has undoubtedly been a very worrying chapter in your CML journey.
Best wishes
Lydia

by sandy craine (Sep 15)

Hi Mo, thanks for sharing your really great news. The PCR result is great, even though you did not lose your molecular response on imatinib, nilotinib obviously suits you better- hopefully the side

by Mo (Sep 15)

Hi to you all, just an update , was on Imatanib for eleven yrs when it stopped working , was put on Nilotanib 2nd June at the time my P CR was 0.413%, went on 300mg per day but within three days I
Category: Uncategorised

Replies: 2

Last updated: 17 September 2014
chrissie on 9 September 2014

Category: Uncategorised

Replies: 5

Last updated: 16 September 2014

DESTINY - and Imatinib 200mg
by chrissie (Sep 16)

for your replies. Good to know it's not just me who finds the tablets rather large. I'll try your ideas.
Hope all is well with everyone

Chrissie

by fehr (Sep 16)

For several years, I have been taking 400mg as 200mg morning and evening. I split a 400mg tablet in half and softened the resulting sharp corners before swallowing. Spreading the dose reduced side

by teddyb (Sep 9)

Hello Chrissie.
I too, had problems swallowing the 400mg pill, so the first half year i dissolved it in water and drank. The i got the 100mg pills, and now i take 4 of them each morning. They are

by chrissie (Sep 9)

Many thanks for your reply, Richard. Hope you are doing well on the trial,
best

Chrissie
Category: Uncategorised

Replies: 5

Last updated: 16 September 2014
JohnnyBoy on 8 September 2014

Category: Uncategorised

Replies: 8

Last updated: 10 September 2014

New on the forum, not new to CML.
by JohnnyBoy (Sep 10)

This morning I received a copy of a letter which details my treatment proposals, they are going to apply for 3rd line tki funding and give me Dasatinib in the meantime to see if it will have any

by Lucas (Sep 9)

Hi, johnny, how are you? about the mutation test, maybe it's better run another one because you had the test some years ago. about the anxiety i'll recomend you to do some yoga. I'm not a "zen" or "

by JohnnyBoy (Sep 9)

On the several times I've asked to try out a third generation TKI I was told that the literature keeps getting revised and the treatment goalposts keep changing, so their approach is "wait and see

by JohnnyBoy (Sep 9)

That's very reassuring, I was worried Dasatinib would not be possible to get hold of. I see several doctors, the local hospital writes up my prescriptions and sends off the blood for the pcr test
Category: Uncategorised

Replies: 8

Last updated: 10 September 2014
David Fitz on 7 September 2014

Category: Uncategorised

Replies: 1

Last updated: 13 September 2014

IS conversion factors
by sandy craine (Sep 13)

Hi David,

not sure I can help with specific local lab value for Barts but I can tell you the CF for Hammersmith..see below.
The American Cancer Soc. published the following on how to calculate

by David Fitz (Sep 7)

Perchance, does anyone know the IS conversion factor used for BCR/Abl PCR tests in the St Barthomelew's Hospital lab? My results I get from there look like they are "raw" figures. If not, I'll ask
Category: Uncategorised

Replies: 1

Last updated: 13 September 2014
lostfairy on 2 September 2014

Category: Uncategorised

Replies: 3

Last updated: 2 September 2014

partner has cml
by Lucas (Sep 2)

hi, chris, i believe the doctor was talking about the sokal classification (low, intermediate and high. old classification from the 70's or 80's i think). some doctors still believes that it's a

by cdw5000 (Sep 2)

Hello Steph,
Lucas has said several good things and I'll add a few more of my own. Firstly, don't panic; the early days are the worst as it's difficult to know which way is up. In time you will both

by Lucas (Sep 2)

Steph, first of all, i'm sorry about your partner. Second of all: he will be fine. i think he'll use nilotinib wich is a second generation TKI with great results. The fatigue is probably caused by

by lostfairy (Sep 2)

hi
after a blood test came up abnormal my partner went to the heamotologist to have cml confirmed as a diagnosis, he had more blood tests and his wbc was 183 in the last two weeks it has risen to
Category: Uncategorised

Replies: 3

Last updated: 2 September 2014
Lucas on 29 August 2014

Category: Uncategorised

Replies: 10

Last updated: 16 September 2014

Dumb question
by sandy craine (Sep 16)

Hi Dennis, of course you are right to say the long term effects of stopping are unknown- but it is pretty much well understood what the short term effects of stopping are for the majority who stop-

by Dennis (Sep 14)

No, I didn't think you thought I was being flippant, - I thought it myself after I posted it. That's clear then! Lol.
Thanks for the clarification as well. As for Destiny, as far as I'm aware they

by sandy craine (Sep 13)

Hi Dennis,

I absolutely agree that humour has a place and did not mean to imply you were being flippant. I also agree that you missing 1 week last year would not have affected your long term

by Dennis (Sep 12)

Sorry Sandy.
I missed a full weeks dose in January this year. This week I got my PCR results from tests taken in April and there was no rise to be seen. So that sounds good. My consultant at
Category: Uncategorised

Replies: 10

Last updated: 16 September 2014
sandy craine on 28 August 2014

Category: Uncategorised

Replies: 2

Last updated: 21 September 2014

Dept of Health Press release: Thousands more patients to benefit from additional £160 million for cancer drugs
by David Ryner (Sep 21)

Thanks for this very interesting post John where you raise such a plethora of issues. I'm not sure where to start but maybe the best way is to break it down. It is a rather long post so apologies to

by johnw1001 (Sep 19)

Hi David,

I guess that this is an issue that affects all of us as patients because however long we have been dx with CML we often think what if my PCR score rises or if I can no longer

by sandy craine (Aug 28)

Some of you may have read the news about an increase in funding for the Cancer Drugs Fund over the time remaining until its expiry in March 2016.

Dasatinib, bosutinib and ponatinib are
Category: Uncategorised

Replies: 2

Last updated: 21 September 2014
Lucas on 26 August 2014

Category: Uncategorised

Replies: 5

Last updated: 29 August 2014

news - appointment with a cml specialist
by Lucas (Aug 29)

Thanks, thomas!!
we'll give more time to glivec now :)

by Thomaskk (Aug 29)

Great news Lucas.congratulations. now it is just a question of administering the suitable TKI
Thomas

by Lucas (Aug 28)

just a quick update: i've just received my mutational analysis: no mutations. so glad :)

by Lucas (Aug 28)

Thanks for the kind words, sandy. I'm waiting for the mutational analysis. with i have no mutations my doctors want me to continue with glivec. he thinks my slow response is due to my high leukemia
Category: Uncategorised

Replies: 5

Last updated: 29 August 2014
Hudson on 22 August 2014

Category: Uncategorised

Replies: 14

Last updated: 4 September 2014

Struggles of finding a matching Donor.
by Thomaskk (Sep 4)

How are you doing ? Are things getting better ? I am praying for your quick recovery
Thomas

by sandy craine (Aug 28)

Dear Hudson,
Data shows that in some patients with progressive disease that compared with nilotinib and imatinib, dasatinib is very useful. Nevertheless, it looks from your latest results that high

by Hudson (Aug 27)

Hi Thomas,
I had Millions, because i remember i went to hospital with a stomach pain, like constipation. little did i know that my spleen had expanded to 24cm. that night i was admitted, and learnt

by Hudson (Aug 27)

Hi Sandy,
Yes its a possible, and finding a place where new hope of life can be bestowed to me, would be a sigh of relief. i was perturbed when my Dr talked of re-administering hydroxyurea.
Prior
Category: Uncategorised

Replies: 14

Last updated: 4 September 2014
Neil1 on 20 August 2014

Category: Uncategorised

Replies: 2

Last updated: 22 August 2014

PCR results and diet change.
by karen (Aug 22)

Hi Neil
Great response and i imagine you are feeling much happier with that.
I rarely have caffeine in anything and tend to use de caff at home so i can't really say whether that has much of an

by cdw5000 (Aug 21)

Hi Neil,
Thanks for sharing that and I'm glad you're seeing a much better response - I find it really interesting as my PCR fluctuates around the 0.1% mark and I'm also on Nilotinib. I think the

by Neil1 (Aug 20)

It's been a while since I last posted but wanted to keep a track on things and make sure that I was correct in what I was posting. I was diagnosed in Oct 2011with CML being 34 years old. I went onto
Category: Uncategorised

Replies: 2

Last updated: 22 August 2014
jeffcarroll34 on 19 August 2014

Category: Uncategorised

Replies: 4

Last updated: 20 August 2014

Dasatinib - Response Time
by cdw5000 (Aug 20)

Hi Jeff,
that all makes sense - I did wonder if you were in the USA and that was what caused the delay. I think Sandy covered most of it really, in that you should look at a slightly longer

by jeffcarroll34 (Aug 20)

Hey guys, appreciate the responses, here is some additional info:
1) I was diagnosed with CML around June 30th. The reason it took so long to get on treatment meds is b/c I was diagnosed in Canada

by sandy craine (Aug 19)

Hi Jeff and welcome,
HU is used to reduce the white cell count if, at diagnosis, it is high. This drug is not specific and targets white cells in general, so is not used for very long- just enough

by cdw5000 (Aug 19)

Hello Jeff,
Firstly, welcome and I hope you'll find the group useful. If you are willing could you give some background to your diagnosis: I.e. where you're being treated, white cell count at
Category: Uncategorised

Replies: 4

Last updated: 20 August 2014
clive walpole on 18 August 2014

Category: Uncategorised

Replies: 1

Last updated: 18 August 2014

PCR
by sandy craine (Aug 18)

007.... Surely this calls for a celebration?
Well done,

Sandy

by clive walpole (Aug 18)

PCR 0.007 another zero at last!
Category: Uncategorised

Replies: 1

Last updated: 18 August 2014
Steven Davies on 18 August 2014

Category: Uncategorised

Replies: 2

Last updated: 18 August 2014

10 Years today since diagnosis
by Thomaskk (Aug 18)

Congratulations. You have crossed the bridge. Enjoy

by Olivia (Aug 18)

Well done! We all hope to get there, sooner or later...

Olivia

by Steven Davies (Aug 18)

Today 18th August 10 years ago I heard those words. You have CML. Didn't know anything about Leukaemia.. It's been a whirlwind 10 years. I have been on a huge learning curve. I've had the most
Category: Uncategorised

Replies: 2

Last updated: 18 August 2014
Thomaskk on 14 August 2014

Category: Uncategorised

Replies: 4

Last updated: 9 September 2014

DESTINY trial update
by manoj yogi (Sep 9)

i like it

by sandy craine (Aug 29)

Hi David,

that is really excellent news! You must be so pleased.
Sandy

by david_a (Aug 28)

Hi, I started destiny on 1st July 2014 on the reduced dose of 200mg glivec. My pcr at the trial start was 0.005%. On 1st august it was 0.003%. Side effects are much better. So far so good.

by sandy craine (Aug 14)

Barry updated his 3m results on 27 July- so far so good. see his post on page 2 of this forum.
S
Category: Uncategorised

Replies: 4

Last updated: 9 September 2014
sandy craine on 14 August 2014

Category: Uncategorised

Replies: 24

Last updated: 11 February 2015

Ginger
by David Fitz (Feb 11)

0.24 to 0.3 is a very small increase. Even then, it depends hugely on the number of control genes and the quality of the blood sample. It's totally within margins for error.
I've had a few plateaus

by ashu1103 (Feb 11)

hi sandy & ginger,
i received my 12 month pcr 0.30. which was 0.24. at 9 month . confused to what to do.

not able to understand why is it stable or increasing.

by ginger (Feb 4)

Dear Sandy,
You are a blessing. Thank you so much for your kindness and wisdom.

Before the blood test, my doctor tried to be optimistic by telling me that at 12 mos, we should see zeroes.

by sandy craine (Feb 4)

Hi Ginger,

Your doctor is right - you are doing well and have reached MMR, and you are right too when you say your PCR results look like they have barely moved again....

your 9 and 12m
Category: Uncategorised

Replies: 24

Last updated: 11 February 2015
Frenchguy on 13 August 2014

Category: Uncategorised

Replies: 2

Last updated: 15 August 2014

pcr at 3 months
by Lucas (Aug 15)

Hey, francis!

congrats for your result. i'm sorry about your side effects and hope you can manage this over the time.
p.s.: not a great world cup for us...germany kicked our asses :(

by sandy craine (Aug 13)

Hi Francis,

pretty spectacular result and right on target. Congratulations. However, it sounds that you are suffering pretty badly with one of the side effects... it must be hard for you.
I am

by Frenchguy (Aug 13)

Hi everybody. It has been a long time that I didn't post because I really feel bad since 2 months. Indeed, I think I suffer from a bizarre side effect of tasigna: It will make you laugh but I suffer
Category: Uncategorised

Replies: 2

Last updated: 15 August 2014