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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
Lucas on 13 August 2014

Category: Uncategorised

Replies: 9

Last updated: 6 September 2014

time delay in PCR test
by Lucas (Sep 6)

Hi sandy. how are you?
I have one more question about PCR: if the amounts of a control gene are less than 10.000 transcripts, the result will fluctuate up or down (or both)?
p.s.:My lab runs pcr

by Lucas (Aug 20)

i just got my 7 month pcr: 2.91% IS. The 5 month pcr was really a mistake :)

by sandy craine (Aug 14)

Hi Lucas... yes, 'shipping time' and then any additional time taken once it arrives at the lab. Glad you can choose which lab will do you q-PCR, but it will depend on how quickly the courier can get

by Lucas (Aug 14)

Hi sandy! Thanks for the insight! when you say "time taken for the sample to reach the lab" you mean the shipping time and the time to run the test or only the shipping time? I'll decide with my
Category: Uncategorised

Replies: 9

Last updated: 6 September 2014
clair merritt on 12 August 2014

Category: Uncategorised

Replies: 13

Last updated: 19 August 2014

Swollen joints
by sandy craine (Aug 19)

Clair,
Professor Charlie Craddock is the Leukaemia specialist at QE. I think he has now moved over to Acute Leukaemias but his background is definitely in CML. He was my doctor when he was still at

by clair merritt (Aug 18)

Thx for your reply Sandy. No we didn't see a CML doctor to be honest we never do! She has appointments tomorrow and Wednesday for chest and autoimmune and has clinic next week for CML. Do you know

by sandy craine (Aug 18)

Clair,

I can see why you are concerned. I agree that rising wbc should be investigated. Did she see a doctor who is expert in CML? Is there any way you can ask to see the haematologist and ask

by clair merritt (Aug 17)

Jess was discharged late Friday evening, wasn't to happy about this as she's still not right. They keep saying that they don't think it's cml related as she has been stable on imatinib for a while.
Category: Uncategorised

Replies: 13

Last updated: 19 August 2014
Lucas on 6 August 2014

Category: Uncategorised

Replies: 8

Last updated: 11 August 2014

big pcr differences between laboratories
by Lucas (Aug 11)

Hi sandy, I'm passing just to say that i had another cbc today. all normal (no band cell) and my platelets are a little higher (87k) and neutrophils too (1.7k). creatinine is normal too. Thanks for

by Lucas (Aug 8)

everyone has between 3-5% band cell in the blood. i had 6% in mine.

by Lucas (Aug 8)

Hi sandy, it wasn't blast, so relax. it's a kind of immature neutrophil, a band neutrophil. no blast, no metamyelocyte, etc. I'll have another cbc on monday. :)

by sandy craine (Aug 8)

Hi Lucas,

when you say you had immature cells show up in your cbc, do you mean blast cells? ..... and what do you mean by 1% above normal range. When you have had an infection it is normal
Category: Uncategorised

Replies: 8

Last updated: 11 August 2014
ladybug1802 on 6 August 2014

Category: Uncategorised

Replies: 6

Last updated: 3 November 2014

New Member/Anyone in Surrey??
by daniellaw (Nov 3)

Hi Angela,
Sorry, I've only just seen your post as I only visit the site every now and again. I was diagnosed just over 12 years ago when I was pregnant with my second son. To say it was a shock was

by sandy craine (Aug 7)

Hi Angela and welcome,
As Chris and Olivia have already said... things will get better for you over the coming months and you will eventually understand the clinical terms and acronyms.
I would

by ladybug1802 (Aug 7)

Thanks guys...yes I am finding it very scary at the moment. I just keep thinking, what if the drugs do not work? And I know I should think positive, and sometimes I do and feel it will all be fine

by Olivia (Aug 7)

Hello Angela
You will indeed find plenty of information on this site. I'd just like to recommend a book by Jessica Wapner, an American scientific journalist, called The Philadelphia Chromosome,
Category: Uncategorised

Replies: 6

Last updated: 3 November 2014
michael2010 on 5 August 2014

Category: Uncategorised

Replies: 2

Last updated: 7 August 2014

New Forum Member
by sandy craine (Aug 7)

Hi and welcome to this forum, I do hope you will find the discussions useful and supportive.
Obviously you are doing well on imatinib as you do not suffer unduly from side effects, which is a bonus

by cdw5000 (Aug 6)

Hello mate,
welcome to an exclusive club. You and I are the same age and were diagnosed in the same year. Great to hear you're doing well on imatinib, i'm on nilotinib and doing ok. I do find the

by michael2010 (Aug 5)

Hello everyone! I just wanted to introduce myself as a new member of the forum. My name is Michael, and I am a 36 year old CML patient, diagnosed in the summer of 2010. Currently on imatinib, 400mg
Category: Uncategorised

Replies: 2

Last updated: 7 August 2014
jeffcarroll34 on 30 July 2014

Category: Uncategorised

Replies: 2

Last updated: 5 August 2014

Imatinib (Gleevec) VS Dasatinib (Sprycel)
by sandy craine (Aug 5)

Hi,

I think Rods advice is good. It depends on your insurance and the cost between the two you mention. Also it depends on whether you have any co-morbidities/other health issues that may

by RodM (Jul 31)

Hi
Ultimately you should decide in consultation with your doctor, however I was very keen to use Dasatinib over Imatinib doe to the statistically demonstrated faster and deeper responses it brings,

by jeffcarroll34 (Jul 30)

So I have been recently diagnosed with CML. I am a healthy 33 year old male.
I am a Canadian, but I have been living in the USA for the last 6 months. During a trip to Canada, I was
Category: Uncategorised

Replies: 2

Last updated: 5 August 2014