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sal on 9 March 2009

Category: Uncategorised

Replies: 1

Last updated: 10 March 2009

Nilotinib funding
by sandy craine (Mar 10)

Dear Sal,

your consultant should be congratulated ;o) If the pct refuses funding retrospectively then you must fight.... local media has a magical effect on PCT's. But I am sure that Robs

by sal (Mar 9)

After many weeks and numerous phone calls and emails we still do not know if Rob has been granted funding for nilotinib. However the consultant at our local hospital, having got fed up of waiting,
Category: Uncategorised

Replies: 1

Last updated: 10 March 2009
sandy craine on 6 March 2009

Category: Uncategorised

Replies: 5

Last updated: 9 March 2009

Support group in Derby area?
by chrissbb (Mar 9)

Yeah mate pretty random, i was born in Bradford lucky me :) been n Halifax over 20 yr , i like it here, You take care mate and many more happy birthdays to come .

by chrissbb (Mar 9)

Thanks Sandy , ive got my ap coming through from eye department for next eye test, also been to doctor and now having blood presure monitored , apart from that i,m feeling Ok at the moment. just

by cmlblogger (Mar 9)

Hi Chris - i share you birthday but was born exactly a year before you , and originally from west yorkshire
a couple of random coincidences
rob - http://cmlblog.spaces.live.com

by sandy craine (Mar 8)

Hi Chris,

thanks for your post. I am sure there are people in the area of West Yorkshire who would be interested in meeting up to form a support group, and it would be more accessible than
Category: Uncategorised

Replies: 5

Last updated: 9 March 2009
robert mcadie on 5 March 2009

Category: Uncategorised

Replies: 5

Last updated: 15 April 2009

bcr coount
by SwanValleySue (Apr 15)

Robert
I found the same issue - dairy does not only send me to the loo but also I feel quite queezy during the day
I found eating quite alot of food - stodgy prior to glivec

does the trick
I

by michael (Apr 14)

Hi Robert,

dont be in a hurry to change to Dasatanib or Nilotinib,if your getting those results on Glivic stick to it,Neutrophils at 1.8 not bad ,you can have GCSF if required to surport your

by robert mcadie (Apr 13)

thanks
Have had a test for mutations and am relieved that it has come back negative. Neutrophils down to 1.6 but am reassured by you being allowed home after transplant with a result of 1.

I

by sandy craine (Mar 8)

Hi Robert,
It might be that you would see a deeper response with another drug... either dasatinib (Sprycel) or nilotinib (Tasigna).... If your doctor is willing to change your therapy I suggest you
Category: Uncategorised

Replies: 5

Last updated: 15 April 2009
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