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kestrel on 4 February 2009

Category: Uncategorised

Replies: 21

Last updated: 3 March 2009

warmfront grants
by kestrel (Mar 3)

Hi Sweet

It's so upsetting to hear about a consultant who doesn't take the pain, tiredness and cramps seriously! My 15 year old, who had a bone marrow transplant for CML last June was on

by sweet 24 (Mar 2)

Hi everyone i have just being reading all your comments about being able to get any help. My mum is getting worse rather then better since she had the cml. She gets really bad cramps in her hands

by technician69 (Feb 17)

Thanks Kestrel. We hope we are sucessful too. :-)

by kestrel (Feb 17)

Brilliant! Do let us know how you get on.

Take care,

kestrel
Category: Uncategorised

Replies: 21

Last updated: 3 March 2009
karen on 4 February 2009

Category: Uncategorised

Replies: 10

Last updated: 23 February 2009

Oncology or Haematology
by sandy craine (Feb 23)

Hi Ali,

I suppose all drugs could be considered 'chemo' as they are made up of chemicals... but 'chemo' is usually used as a shortened form of 'chemotherapy' which means to most to describe

by karen (Feb 13)

HI Ali
I now have to go to both! If I don't go to Oncology they won't let me have the drugs and then I have to go to Haematology for my normal appointment. Waste of time and money I would have

by Ali Loram (Feb 13)

Hi Karena, I go haematology, where do you go?

Ali

by karen (Feb 12)

HI Ali
I have a little red book! Out of interest do you go to Oncology or Haematology for your appointments?
K
Category: Uncategorised

Replies: 10

Last updated: 23 February 2009
kestrel on 30 January 2009

Category: Uncategorised

Replies: 8

Last updated: 19 February 2009

Have you had a BMT?
by skiinglaketahoe (Feb 19)

Hi Kestrel
Thanks for your message in my guest book. You mustn't base your opinions on DLI on me!
Wishing Rio lots of luck with the next PCR and let me know how it is going........
Will be thinking

by robert fox (Feb 14)

my name is robert fox. first , let me say i've had 3 bmt's and 3 or 4 dli's. the 3rd bmt plus the dli (dli done feb 22,08)seems to have done the trick (so far) but it made me very ill with acute

by skiinglaketahoe (Feb 9)

Hi Kestrel
I forgot to say, on my previous post, that I haven't taken glivec post transplant and there is no expectation that I will. I had the BMT as I was intolerant to both glivec and sprycel.
No

by jaynelister (Feb 9)

Hi Kestrel

Aaron also had DLI - in fact we were told that it would more or less be expected to have this.

Much love

Jayne x
Category: Uncategorised

Replies: 8

Last updated: 19 February 2009
cmlblogger on 29 January 2009

Category: Uncategorised

Replies: 6

Last updated: 2 February 2009

3 log reduction confusion
by danielchee (Feb 2)

Hi Keith

Thanks for clarification as never too good into maths. Keeping my fingers crossed as will be visiting the heamatologist later this month.

daniel

by keith Pratt (Feb 1)

Hi Daniel

Depends on where you start, Hammersmith are assuming a Ph+ve level of 70%+ve, i.e.70.00

so if you move the decimal point to the left once, hence one log, move it two spaces,

by danielchee (Jan 30)

Just to add to the above, what I meant to ask is 2, 3, n 4 log reduction.

How do you read them. Thanks

daniel

by danielchee (Jan 30)

Hi

My wife would be knowing her PCR soon. I read with interest all of your

postings on "log reduction" . Could someone please explain ?
Category: Uncategorised

Replies: 6

Last updated: 2 February 2009
Barbs on 27 January 2009

Category: Uncategorised

Replies: 1

Last updated: 27 January 2009

Today's Daily Mail
by Steven D (Jan 27)

I feel that the above mentioned article is irresponsible reporting.

I am extremely pleased that the lady in question has done well and it is also very encouraging to see that cord blood

by Barbs (Jan 27)

http://www.dailymail.co.uk/health/article-1128336/My-cancer-cured--thank...

Very interesting story.
Category: Uncategorised

Replies: 1

Last updated: 27 January 2009
fish4 on 26 January 2009

Category: Uncategorised

Replies: 5

Last updated: 8 February 2009

New to Tasigna help
by CHRISSY (Feb 8)

Being on Glevac for the past 7 months caused me problems so they put me on Nilotonib.

I was great for 1 week then had problems with skin rash. It was so bad I felt i had an army of ants

by Elaine (Feb 6)

HI
I WAS ON GLIVEC FOR 2 YEARS AND THEN DASATINIB NOW I AM ON NILOTINIB, I HAVE NO PROBLEMS , I TAKE IT EARLY ON IN THE DAY ATLEAST 1 HOUR B4 BREAKFAST AND LATER ON IN THE DAY ABOUT 5 I TAKE IT

by Pennie (Jan 26)

Hi Trevor

I started Tasigna Jan 2008. after 6 years on Gleevec. Started on 400 x 2 day but reduced because of side effects. Now on 400mg once a day, expecting to have increase at next

by fish4 (Jan 26)

Hi Sandy
Thank you for your info and comments

I have been onto the website as recomended and learned alot.

I will speak to my Onc tomorrow
Are you a CML sufferer and if so what
Category: Uncategorised

Replies: 5

Last updated: 8 February 2009
tadlaw on 24 January 2009

Category: Uncategorised

Replies: 2

Last updated: 27 January 2009

ANEMIA
by tadlaw (Jan 27)

Much thanks Sandy. I hope all is well on your side of the pond.
I did speak with Druker and he explained Ben's anemia is "mild" (it looks worse to me!) and that his counts have come up from the 8

by sandy craine (Jan 26)

Hello Tracey,

unfortunately low HGB levels seem to be a problem for many of us when taking Glivec. I am not sure about the other TKI's?

My HGB was always around 10... never above...

by tadlaw (Jan 24)

Hi all,
My son has had a wonderful result from Gleevec and has had a complete cytogenetic response. He alternates 400/500mg of Gleevec per day. The only problem that I'm trying to deal with now is
Category: Uncategorised

Replies: 2

Last updated: 27 January 2009
sal on 24 January 2009

Category: Uncategorised

Replies: 3

Last updated: 26 January 2009

Dasatinib and heart problems
by sandy craine (Jan 26)

Dear Sal,

I am glad that Rob's heart problems have improved and that his pcr is still very low. Please do update here when you have news of the PCT's decision on funding nilotinib for Rob.

by zaviemiller (Jan 24)

Hi Sal,
MMR is a great goal to achieve. There is new evidence (Dr. Druker) that says being stable at CCR for several years is as good as achieving MMR or PCRU. Too many doctors believe that it is

by zaviemiller (Jan 24)

Hi Sal,
MMR is a great goal to achieve. There is new evidence (Dr. Druker) that says being stable at CCR for several years is as good as achieving MMR or PCRU. Too many doctors believe that it is

by sal (Jan 24)

just a quick update on what's been happening with Rob since I asked for advice at the end of November. Zavie and Sandy your advice was as usual spot on. He is still off Dasatinib the plural effusion
Category: Uncategorised

Replies: 3

Last updated: 26 January 2009
kiruba ganesh on 21 January 2009

Category: Uncategorised

Replies: 4

Last updated: 24 June 2009

what to do next?
by Chris Wood (Jun 24)

Hi Kiruba

I know this may be a long shot and may not apply to you but my consultant told me of a case where someone was in a similiar situation as you and they found that his diet

by tadlaw (Jan 24)

Hi Kiruba,
When my son was initially diagnosed at a prominent New York hospital, he was put on 800 mg of Gleevec. That's because there were recent studies that stated that patients who take the

by zaviemiller (Jan 23)

Hi Kiruba,
It is time to change doctors. From the little you have reported, you are receiving sub optimal treatment.
I know several patients who are doing remarkably well on SKI-606 after failing on

by sandy craine (Jan 21)

dear Kiruba,
What you might need to do is to get a second opinion. It is essential that you see a doctor who is expert in CML.
Given that your PH+ levels have not decreased from 84% over the last 2
Category: Uncategorised

Replies: 4

Last updated: 24 June 2009
cmlblogger on 20 January 2009

Category: Uncategorised

Replies: 9

Last updated: 26 January 2009

free prescriptions ?
by sandy craine (Jan 26)

I have repaired the links and hope they work now... :o) try below
Sandy
.... link to nhs business authority

by Ali Loram (Jan 23)

Hi karen, I had trouble as well but just googled it instead & it got me there. Hope this helps

Ali

by karen (Jan 23)

HI Sandy - I can't seem to get the links in your emails to work? Help!

Karen

by Ali Loram (Jan 23)

Thanks for the info sandy, a great help again!
Category: Uncategorised

Replies: 9

Last updated: 26 January 2009
SwanValleySue on 20 January 2009

Category: Uncategorised

Replies: 7

Last updated: 12 February 2009

Eye Bleeds
by leslie chambers (Feb 12)

Hi sue, I am not quite sure what PCRU means, but I take it it means undetectable, well it was quite a while, but a DR told me it does'nt mean it is'nt there. its just undetectable, and it will

by SwanValleySue (Feb 10)

Good Morning Les
Thanks for your response on eye bleeds
I was amazed that you do not take any medication for CML and your PCR tests still come back that you are PCRU
How long were you PCRU before

by leslie chambers (Feb 5)

Hello Zavie, I am not on any meds for CML at all, my PCR remains undetectable.

Kind regards, Les.

by zaviemiller (Feb 5)

Hi Les,
What medication have you been taking since stopping Gleevec and what is your CML status?
Zavie
Zavie Miller (age 70)

Ottawa, Canada

dxd AUG/99

Gleevec since MAR/27/01 (400
Category: Uncategorised

Replies: 7

Last updated: 12 February 2009
Bram on 18 January 2009

Category: Uncategorised

Replies: 6

Last updated: 19 January 2009

Liver function test.
by karen (Jan 19)

I have a test every time but that has only been since I had the start of liver failure after a reaction to Glivec. I ended up in hospital (the same colour as Bart Simpson!) and now they check

by sandy craine (Jan 19)

Hi Bram,
It would be best to take a look at the FAQ/Glossary on the main menu.

Go to 'Normal Blood Counts' and scroll down to the Liver Function Tests..... I have copied some info here but

by valandi (Jan 19)

For the first 12 months following dx, as far as we can tell, LFTs were not routinely done by the hospital where Val is being treated.
In Mar last year, one was done for an unrelated illness and the

by mariansy (Jan 19)

I have an LFT every time I have my bloods done. My dr doesn't give me the results though. He says if they are off then he'll tell me.
Marian
Category: Uncategorised

Replies: 6

Last updated: 19 January 2009
sweet 24 on 18 January 2009

Category: Uncategorised

Replies: 5

Last updated: 2 March 2009

menopause
by sweet 24 (Mar 2)

I have only just read your comment. Mum is getting counciling and has started medacation. how are you doing? It's great to know that there are people to help, i told her about the site and she is

by moyabird (Jan 19)

Hi

I was moved by your mom's story to finally figure out how to post even though I have been a member for a few years and diagnosed over 4 years ago (when I was 41).
Yes I think both the CML

by sweet 24 (Jan 19)

thankyou for this i will certainly tell my mum about that website. My mum is 42. Thankyou so much for you help.
Sweet 24

by sandy craine (Jan 19)

The age at the onset of menopause really does depend on the individual. Some women experience menopause much earlier than others. You do not say how old your mum is but her symptoms might be
Category: Uncategorised

Replies: 5

Last updated: 2 March 2009
sparkypcl on 17 January 2009

Category: Uncategorised

Replies: 5

Last updated: 6 March 2009

Echinacea
by sparkypcl (Mar 6)

Hi folks, thanks for your replys, I've tried to keep away from any colds etc and use some anticeptic gel now when I am at work handing money justin case that is where I am pickibg up the infections

by Barbs (Feb 3)

Here is an article from the Journal of Clinical Oncology and the National Cancer

Institute on the combination of taking herbs and cancer drugs.

www.healthmonitor.com (winter 2008 edition

by carmeplas (Jan 21)

Hi,
We were told to not use echinacea or similars, because they increase the levels of white cells in the body, which is just the opposite that you want right now.
Carmen

by Barbs (Jan 21)

I've always been told to avoid Echinacea by my Dr, there were worries that it could affect the liver & the concentration of Glivec in the blood.

I had a look on internet & came up with
Category: Uncategorised

Replies: 5

Last updated: 6 March 2009
vickiep on 16 January 2009

Category: Uncategorised

Replies: 6

Last updated: 5 February 2009

Philadelphia chromosone
by vickiep (Feb 5)

Hi..thank you everyone! I recently had a nasty tummy bug and after three days of being in bed with only water passing through both ends(!) and not being able to take my Glivec...I felt GREAT!! So I

by Ali Loram (Jan 22)

Hi Vicki, I am so sorry that you are feeling so down and not tolerating Glivec, I was very much the same as you whilst on it as well. I am now on Nilotinib. I would agree with Sandy, you need to

by sandy craine (Jan 18)

Dear Vicky....... I am sorry to read that you are suffering so much from side effects of the increase in dose. It seems to me that the effects are really far too much for you to tolerate for much

by sandy craine (Jan 18)

Your post from the previous thread.

Dasatanib
Submitted by vickiep on Fri, 2009-01-16 18:24.
I have read all of the above with great interest. I was started on 400mg of Glivec daily some
Category: Uncategorised

Replies: 6

Last updated: 5 February 2009
Barbs on 15 January 2009

Category: Uncategorised

Replies: 4

Last updated: 16 January 2009

Can anyone help a young french CML athlete?
by sandy craine (Jan 16)

Dear Barbara,

Here are the details of Michel Anthoine's group which has its base in Nice:
Name of Organisation:

Leucémie espoir 06
Website:

leucemie-over-blog
Contact Telephone

by Barbs (Jan 16)

Hi Sandy,

thanks for replying - this is the first time that I've heard of the French group - could you let me have their address please?

Dr Nicolini is planning to organise a CML

by cmlblogger (Jan 16)

you might want to try Chris Todd at Torquay Unitd, who has just been dx'd http://news.bbc.co.uk/sport2/hi/football/teams/t/torquay_united/7830596.stm although not sure how you would get in touch
or

by sandy craine (Jan 15)

Hello Barbara,

I know there is a French CML support group run by a patient based in the South. I will contact him and ask if he knows of someone Maelan can talk to.

Meanwhile I hope
Category: Uncategorised

Replies: 4

Last updated: 16 January 2009
Michael.. on 15 January 2009

Category: Uncategorised

Replies: 1

Last updated: 15 January 2009

Caring bridge Blog
by sandy craine (Jan 15)

Hi Michael..... good luck for your upcoming transplant. I will be following your progress via your diary.

Sandy ;o)

by Michael.. (Jan 15)

As some may have noticed, I started a blog on Caring Bridge a week or so ago, thanks to Sandy who has been a great help to me on many fronts, including adding the link on the Home page.
I’ve found
Category: Uncategorised

Replies: 1

Last updated: 15 January 2009
Vangogh on 14 January 2009

Category: Uncategorised

Replies: 1

Last updated: 15 January 2009

BCR/ABL Test Update
by sandy craine (Jan 15)

Dear Tony........ many congratulations on your reduced levels which is quite a significant drop over just a few (4?) months

best wishes

Sandy

by Vangogh (Jan 14)

Hi

Really pleased today as I have just had my last BCR/ABL test results e-mailed to me. I have been on Glivec since July 2008.

Diagnosed in June 2008, and my test results in October 2008
Category: Uncategorised

Replies: 1

Last updated: 15 January 2009
Colin Woodall on 13 January 2009

Category: Uncategorised

Replies: 3

Last updated: 16 January 2009

Molecular remission (now posted in the right place)
by Colin Woodall (Jan 16)

Hi Sandy,
thankyou very much for your detailed reply. I am trying not to get too carried away over a single result, as you say it is the trend which matters most. I had already read the STIM study

by sandy craine (Jan 15)

Hi Colin...... many congratulations, you have a right to feel smug! CMR is a great place to be....especially after you were stuck at 0.3% for a while.

As you know we are always told to look at

by SwanValleySue (Jan 13)

Congratulations Colin
Crack the bubbly - you have a right to feel elated.
Sandy or others will be able to give you more technical

information about relapses but the basic is just

Keep

by Colin Woodall (Jan 13)

Hi all,
I have just had it confirmed today during my routine 3 monthly appointment with my consultant that my latest test results of 0.0000% mean I have achieved molecular remission after having "
Category: Uncategorised

Replies: 3

Last updated: 16 January 2009
Vangogh on 11 January 2009

Category: Uncategorised

Replies: 3

Last updated: 13 January 2009

Grape Seed Extract
by Colin Woodall (Jan 13)

Oops!!

just realised I posted the above in the wrong place.

Sorry.

by Colin Woodall (Jan 12)

Hi all,
I have just had it confirmed today during my routine 3 monthly appointment with my consultant that my latest test results of 0.0000% mean I have achieved molecular remission after having "

by Ali Loram (Jan 12)

Hi Tony, I see if you click in the News section on the left of the page you will find more information on grape seed extract. I think its very early days just yet for there to be real time results

by Vangogh (Jan 11)

Hi

Just reading about grape seed extract inviting Leukemia cells to commit suicide,and I was wondering if it would have any detrimental effect on my Glivec therapy(400mg). Has any body tried
Category: Uncategorised

Replies: 3

Last updated: 13 January 2009