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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
Smahmood on 29 July 2014

Category: Uncategorised

Replies: 2

Last updated: 7 August 2014

Bilateral femoral marrow infiltrative disease
by Smahmood (Aug 7)

Hi Sandy,
Thank you for your reply.

I had a bone marrow biopsy on Monday and once the results are back then I will see Prof Apperly.
I will keep you updated.
Thanks
Shahid

by sandy craine (Aug 5)

Hi Shahid, sorry I cannot help you on this. I have attempted a few searches on Bilateral femoral marrow infiltrative disease' and from my understanding it can have several causes. I think you need

by Smahmood (Jul 29)

Hello,
I was wondering if someone has come across "Bilateral femoral marrow infiltrative disease".
I was having some swelling/discomfort around my left hip joint; i went to my GP and she asked me
Category: Uncategorised

Replies: 2

Last updated: 7 August 2014
David Fitz on 29 July 2014

Category: Uncategorised

Replies: 6

Last updated: 8 August 2014

Drugs to avoid when on TKIs (article)
by sandy craine (Aug 8)

Hi Louisa,

Our policy is to protect our forum members privacy so we do not encourage posting private email addresses here as it is an open forum and anyone could access and use the email

by Luisa (Aug 7)

Sandy is right, I can access and download for free many "pay for" papers through the university but I cannot share the links.I don't know what the policy of this forum is regarding giving members

by sandy craine (Aug 5)

If you buy the PDF of a published document of this kind (with restrictions on use) you can't publish it or share it on a public platform like this. That is why I could not put it on our home page, I

by nithisevaguru (Aug 5)

Hi Luisa can you kindly share the document that talks about the drugs to avoid?
Category: Uncategorised

Replies: 6

Last updated: 8 August 2014
vickiep on 1 September 2014

Category: Uncategorised

Replies: 2

Last updated: 8 September 2014

Cholesterol
by vickiep (Sep 8)

Thank you Gerry, very Helpful. Any evidence to suggest that TKI's increase levels of Cholesterol in the first place?

Thanks

Vickie

by Gerry (Sep 2)

My experience with the statin Lipator and Glivec, was that the statin appeared to hang around in the liver for longer. My cholesterol went into the low end 3.1

I had gone down to the lowest

by vickiep (Sep 1)

What information, if any, do we have to support muted "evidence" that TKI's increase the level of Cholesterol? Also, I have seen a posting from the US suggesting that Sprycel increases the
Category: Uncategorised

Replies: 2

Last updated: 8 September 2014
ashu1103 on 27 July 2014

Category: Uncategorised

Replies: 1

Last updated: 31 July 2014

Probable cause of CML
by RodM (Jul 31)

Interestingly, I had both an X-Ray to find a kidney Stone about 30 months before diagnosis, and a further CT-Scan (which did find it) 24 months before DX. I was 15x normal white cells at DX and a

by ashu1103 (Jul 27)

HI all,

i am CML patient from India. In october i had donated blood at that time my CBC report were normal, but during a routine test in december my TLC was 96000 i have been a kidney stone
Category: Uncategorised

Replies: 1

Last updated: 31 July 2014
DanRosewarne on 25 July 2014

Category: Uncategorised

Replies: 14

Last updated: 30 July 2014

Recently Diagnosed from New Zealand
by Gerry (Jul 30)

Grapefruit affects your CYP3A4 concentrations - which can make your Gleevec etc hang around in your liver for longer. This means there is a potential that your side effects will increase.

http

by David Fitz (Jul 28)

A glass of grapefruit juice affects CYP3A4 concentrations for about 3 days - so needs to be avoided entirely, really. Seville Orange juice is nearly as potent (in CYP3A4 interaction terms) as

by David Fitz (Jul 28)

.

by ginger (Jul 28)

Dear Sandy,
I appreciate all that you write. I was diagnosed (shockingly as everyone else) in January, 2014 and am on Sprycel 100mg. Went from 100% to 20% to .385% to .365% in 6 mos and am now on a
Category: Uncategorised

Replies: 14

Last updated: 30 July 2014
Lucas on 18 July 2014

Category: Uncategorised

Replies: 13

Last updated: 14 August 2014

pcr-6 months
by ginger (Aug 14)

Dear Sandy,

Thank you for your information. It really helps me with clarity.

I was 100% at diagnosis; 20% IS a month later; .385% IS at 3 mos and .365%IS at 6 mos. I thought Sprycel

by sandy craine (Aug 5)

Dear Akash,
very good to hear you PCR result has continued to drop. I am sure you will see further reductions in BCR-ABL1 percentages as the months go on and will reach MR3 -0.1%- soon.

by ashu1103 (Aug 5)

hi sandy

i was very concerned after my 6 months pcr which was 1.4 , doc told me that it should be below 1 bcoz at 3 months it was 5.876, but i am relieved bcoz after 7month it is 0.781.

by Lucas (Jul 29)

hi ginger.
MCYR (less than 35% ph+) is the amount of ph+ in the marrow. A MMR is a pcr of 0.1% or less. Sprycel is a very good medication and you probably will hit MMR sooner than i. Good luck!!!
Category: Uncategorised

Replies: 13

Last updated: 14 August 2014
sandy craine on 15 July 2014

Category: Uncategorised

Replies: 9

Last updated: 22 July 2014

Prognosis for patients with CML and >10% BCR-ABL1 after 3 months of imatinib depends on the rate of BCR-ABL1 decline
by Lucas (Jul 22)

Well, i think this paper correlates with this one:
http://www.cancernetwork.com/chronic-myeloid-leukemia/bcr-abl-cutoffs-3-...
We all want to be fast responder but, as everyone says: it's a marathon

by sandy craine (Jul 22)

Thanks for your very helpful view on this Luisa, insightful as usual.
Sandy

by sandy craine (Jul 22)

I am really not that clear what the authors mean, but thinking about it- and I am no expert, baselines generated from samples taken at diagnosis often vary because it depends on how many normal ABL

by Lucas (Jul 21)

the response is individual. some people has great prognosis but fail and some people has a bad prognosis but get good responses. i think this paper show us another information: the importance to
Category: Uncategorised

Replies: 9

Last updated: 22 July 2014
sandy craine on 10 July 2014

Category: Uncategorised

Replies: 2

Last updated: 19 July 2014

Do you have questions about blood tests?
by sandy craine (Jul 19)

Ashu,

If you need an answer from the Susan LeClair, then you must click on the link in the above post.
However, I will try to help as far as I can.
I am not able to tell you what the 'EAN

by ashu1103 (Jul 17)

hi i am a cml patient

my pcr 3 months back was 5.876

recently it showed pcr 2.23 & below it was written IS-NCN 1.40 (europe against cancer )EAN standard scale

what does this

by sandy craine (Jul 10)

This is a great initiative from Patient Power. It's from their 'ask the expert' series- here you can ask Dr Susan Leclair questions about blood tests .....
Sandy
http://us2.campaign-archive1.com/?u=
Category: Uncategorised

Replies: 2

Last updated: 19 July 2014