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amanda1977 on 3 March 2009

Category: Uncategorised

Replies: 1

Last updated: 8 March 2009

memory problems
by sandy craine (Mar 8)

Hi Amanda,

Many people have said that they experience a sort of foggy thinking...often described as 'Glivec brain'.

I think it also might be to do with the fact that CML is a serious

by amanda1977 (Mar 3)

hello all,
i have been on glivec for 6 months and have had quite a few different side effects but are all being managed well with various medications, one thing really does bother me is my memory,
Category: Uncategorised

Replies: 1

Last updated: 8 March 2009
Ali Loram on 3 March 2009

Category: Uncategorised

Replies: 1

Last updated: 5 March 2009

3.8 log reduction
by sandy craine (Mar 5)

Dear Ali...... wow that's is certainly really good news. Congratulations ;o)

Sandy

by Ali Loram (Mar 3)

Hi all,

Just thought I'd let you know some good news... today my consultant informed me that I now have a 3.8 log reduction having been on Nilotinib since November 08! (Dx september 07 Glivec
Category: Uncategorised

Replies: 1

Last updated: 5 March 2009
josecisne7 on 25 February 2009

Category: Uncategorised

Replies: 4

Last updated: 27 February 2009

3rd cytosgenetic test
by josecisne7 (Feb 27)

dont know i am going to find out next tuesday to se if their is thanks

by sandy craine (Feb 27)

Dear Jose,

you should try to get a mutation test as Zavie has suggested. If this is possible at your centre?

Sandy

by Bhiru (Feb 26)

Hello,

I thought I would share our recent experience with you.

Towards the end of last year a routine blood test detected a mutation in my husband's blood tests. At the same time his

by zaviemiller (Feb 26)

Hi,
See if you can get your doc to do mutation testing on you. If you do have a mutation, then Gleevec might not be the right drug for you. If your insurrance won't pay you can ask the drug company
Category: Uncategorised

Replies: 4

Last updated: 27 February 2009
walshb on 19 February 2009

Category: Uncategorised

Replies: 6

Last updated: 24 February 2009

Switching to Tasigna
by walshb (Feb 24)

Thanks Sandy
Felt better physically since switching and also mentally as I'm happier to be on a stronger therapy. I always felt that Glivec was not going to work long term for me given my initial

by walshb (Feb 24)

Thanks for your reply Ali
Started last Friday and so far so good. I feel much better actually and some colour is returning to my skin. Slight lightheadedness or dizzyness but that seems to be less a

by walshb (Feb 24)

Hi Zavie
Thanks for your reply. Don't worry - we are comparing apples to apples as I have regular PCR testing in two separate labs with samples being taken every three months for both. The trend in

by zaviemiller (Feb 23)

Hi Brian,
In order to detect a trend you really need 3 consecutive PCR results. They should all be done at the same lab, otherwise you are comparing apples to oranges.
The margin of error in many
Category: Uncategorised

Replies: 6

Last updated: 24 February 2009
alan hampson on 15 February 2009

Category: Uncategorised

Replies: 2

Last updated: 23 February 2009

Irritable Bladder Syndrome
by sandy craine (Feb 23)

Hi Alan,

I am not sure if this is a side effect of imatinib. However it might be that you are not drinking enough water and so your kidney's would be stressed and you could be experiencing

by karen (Feb 16)

Hi Alan

Not sure if its related at all but the reason I went to the doctor's in the first place was I had to keep going all the time and I thought I had Diabetes and it turned out to be CML.

by alan hampson (Feb 15)

Following various tests, I have just been told by my Doctor that the most likely reason for me needing to ‘go’ more frequently is that I probably have ‘irritable bladder syndrome’. She asked if I’d
Category: Uncategorised

Replies: 2

Last updated: 23 February 2009
josecisne7 on 14 February 2009

Category: Uncategorised

Replies: 8

Last updated: 23 February 2009

my cml , kind of worried
by josecisne7 (Feb 23)

i feel also lucky that their is medication that handles our condition ,just hope i dont have to change medication thanks

by josecisne7 (Feb 23)

my doctor had told me that i was in late chronic phase, when my first cytogenic test was made their was philadelfia cromosone and 2 other altered genes , so i was put on 600mg, second cyst test came

by vicki h (Feb 23)

Just to agree with what everyone has said - keep asking questions but don't be too worried.

I've been on gleevec for 7 years now and it still works with only a few side effects. I feel lucky

by sandy craine (Feb 23)

Hi Jose and welcome,

I hope your current test results are good and show your continued response to imatinib is good.

I know it is hard not to worry, but do take heart from others who
Category: Uncategorised

Replies: 8

Last updated: 23 February 2009
Janet on 5 February 2009

Category: Uncategorised

Replies: 1

Last updated: 6 February 2009

Understanding CML - a conversation with the experts
by sandy craine (Feb 6)

Dear Janet,

thanks for providing the link to this excellent webcast. It will really help in understanding the recent questions about log reductions with Dr. Druker's overview of pcr/

by Janet (Feb 5)

Hello everyone!
I would just like to bring to your attention this very informative talk given by Dr Brian Druker and Dr Neil Shah:
click here to view the talk via www.cancereducation.com
It is so
Category: Uncategorised

Replies: 1

Last updated: 6 February 2009
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