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tkrober on 13 November 2007

Category: Uncategorised

Replies: 3

Last updated: 26 November 2007

New to Forum
by tkrober (Nov 26)

Ken Roberson

Thanks for your response, and appreciated Sandy's response also. Since I have the "new" site, I will be checking it often.

by sandy craine (Nov 15)

Hello Ken,

good to hear from you and good to hear that you continue to do well on Glivec. having two cancers to deal with seems a little unfair to say the least! but the news that your PSA

by zaviemiller (Nov 13)

Hi Ken,
A voice from the past. It's so nice to hear from you. Number 330 in the Zero Club.
Zavie
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec

by tkrober (Nov 13)

Hi,

I am new to this forum, but I did have an old site where I enjoyed reading Sandy's journey for many years and the various other posts.

I reside in North Carolina in the USA , and I
Category: Uncategorised

Replies: 3

Last updated: 26 November 2007
Mistymoo on 9 November 2007

Category: Uncategorised

Replies: 2

Last updated: 12 November 2007

Complimentary medicine
by sandy craine (Nov 12)

Hi,

there are therapies that can help and that do not require taking herbs at all....although Nancy is right when she says that these can be very helpful as long as you are aware of the

by Nancy C. (Nov 10)

Hi,

Complimentary medicine can be very good to help offset any side effects that you have with the drug. There are just a few herbs that you are advised to not take....St. John's Wort,

by Mistymoo (Nov 9)

Hi
My dad has just asked me to find out if anyone has tried any complimentary therapy in conjunction with Glivec. If you have have do you feel this has benefitted you in anyway?
Thanks
Category: Uncategorised

Replies: 2

Last updated: 12 November 2007
Mistymoo on 8 November 2007

Category: Uncategorised

Replies: 5

Last updated: 17 November 2007

Pain in dad's hip
by technician69 (Nov 17)

Hi Sharon, my daughter (15) was diagnosed with CML in May. Just lately she has been having horrendous pain in her hips too. I think it may be a side effect of Glivec. She is taking codeine at the

by Mistymoo (Nov 17)

Hi
Dad went to his appt on Tuesday and apparently the Dr didn't really say anything about the pain, in fact was quite disinterested by all accounts. The pain had gone within a day so I'm sure it

by Mistymoo (Nov 9)

Hi
Thanks for taking the time to respond. I will pass the information on. My dad is 60. He had hip pain before his dx I think so possibly not the Glivec and as we don't know how long he has had

by Paul Cooke (Nov 9)

Hi Sharon,

Sorry to hear your father's had this problem.

He should let the doctors at the hospital know about this problem I think.

Bone pain can be related to cml, and also is a
Category: Uncategorised

Replies: 5

Last updated: 17 November 2007
sandy craine on 8 November 2007

Category: Uncategorised

Replies: 12

Last updated: 28 November 2007

NICE appraisal of Dasatinib/Nilotinib-please write to your MP
by sandy craine (Nov 28)

hi Lorraine, thanks for joining us and making the effort to write to your MP. i think we will not have to go as far as a petition as the letters i have received from NICE indicate that our campaign

by Andytyneside (Nov 27)

Many thanks Susan
I'll have a look at your blog later. I'm at work at the moment so it will be after teatime.
I'm not sure what type of BMT I'm having, it's one of the things I need to ask on

by skiinglaketahoe (Nov 27)

Andy, I am 32 days into a 'mini' SCT............so far it has been without difficulty......read my blog

www.caringbridge.org/visit/susanleigh

it may help to allieviate some of your

by Andytyneside (Nov 27)

Unfortunately Paul, things have moved on since my last post. It would appear that I'm going to have to go for the BMT option. Reason being that I've ran out of other choices.
Dastinib (have I spelt
Category: Uncategorised

Replies: 12

Last updated: 28 November 2007
sal on 5 November 2007

Category: Uncategorised

Replies: 2

Last updated: 8 November 2007

good news
by zaviemiller (Nov 8)

Y A H O O O !!! Y I P P E E E !!!

Number 1126 in the Zero Club

Zavie
Sal, please send me your email address.

Thanks
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

by sandy craine (Nov 7)

hi Sal,

this is very good news.... Rob has had a major molecular response (MMR) and hopefully will go on to see more zero's in the futre.

congratulations.

best wishes,

Sandy

by sal (Nov 5)

Hi Everyone, Rob's PCR after 6 months on Dasatinib (2 1/2 years since diagnosis) has come back at 0.2, it was 1.5 last time. I think technically we're aiming for 0.1 for MMR but we're going to
Category: Uncategorised

Replies: 2

Last updated: 8 November 2007
Colin Woodall on 2 November 2007

Category: Uncategorised

Replies: 7

Last updated: 4 November 2007

PCR results
by Colin Woodall (Nov 4)

Hi Bill,
Thanks for the advice. Here's hoping the downward trend continues.
Regards,
Colin

by Colin Woodall (Nov 4)

Hi Zavie,
Thanks for all the info. All I know for sure at the moment is that I reached CHR after 1 month.

Hope you continue to keep well.
Regards,
Colin

by Colin Woodall (Nov 4)

Hi Rob,
Unfortunately I don't know the count was to start with. I will ask next time I see the consultant. Stupid really but I always seem to forget to ask something each time. Thanks very much for

by wkeeping (Nov 3)

Colin,
5% sounds good at 3 months, but as Rob and Zavie say, it depends on the initial value. However, the important word is down. "Good but not good enough" at 3 months probably equates to what
Category: Uncategorised

Replies: 7

Last updated: 4 November 2007
donnaberry on 1 November 2007

Category: Uncategorised

Replies: 2

Last updated: 5 November 2007

Spleen Discomfort
by donnaberry (Nov 5)

Hey Russ,

That all makes sense as I had 6 days of chemo soon after dx. Now I have my first cold so my atention has switched to that!!!

Regards,
Donna

by russ whales (Nov 5)

Donna
I can only offer the following which I was told at Kings College Hospital in London.
When the spleen gets very enlarged small parts of it can die and where these are at the surface they can

by donnaberry (Nov 1)

Hi,

I started this whole CML journey back in May when I was admitted to ER in a bit of a state. My WBC was 539,000 they thot I had AML I guess so gave me 6 days of chemo and a couple of
Category: Uncategorised

Replies: 2

Last updated: 5 November 2007
David on 31 October 2007

Category: Uncategorised

Replies: 5

Last updated: 6 November 2007

Good news from NICE
by kestrel (Nov 6)

A draft letter would be fantastic please! Our MP sent me two letters in response to the last one and some help in asking him to keep up the pressure would be great. Thanks,

kestrel

by sandy craine (Nov 2)

hi David and Phil,

this is the best strategy i think. we may be a small patient population but we have a loud voice and we should build on this.

the more of us that write letters to ur

by David (Nov 1)

I very much agree with Sandy as to what should be done now and I will add my bit by writing to my MP, who has been very supportive so far, asking him to take this up with Alan Johnston, the Minister

by valandi (Nov 1)

Val and I also had the same response from NICE. We have already penned a letter to both our MP and the health minister about the current situation and will post the response when, and if, we
Category: Uncategorised

Replies: 5

Last updated: 6 November 2007
donnaberry on 31 October 2007

Category: Uncategorised

Replies: 4

Last updated: 1 November 2007

New to CML
by donnaberry (Nov 1)

Sandy,

Thanks alot for your helpful response

Donna

by donnaberry (Nov 1)

Russ

Thanks for the good info :)

Donna

by sandy craine (Oct 31)

hi Donna,

glad you have found us and welcome to our forum.
the NHS fully funds Glivec as first line therapy for ph+ CML so if you decide to come back to the UK then you should have no problem

by russ whales (Oct 31)

Hello Donna
I can only speak for my local heamatologist (Haywards Heath) and Kings College Hospital in London where I have been cared for. They are both first class - I was given Glivec as soon as
Category: Uncategorised

Replies: 4

Last updated: 1 November 2007
sal on 31 October 2007

Category: Uncategorised

Replies: 3

Last updated: 1 November 2007

Folic Acid In Bread
by sandy craine (Nov 1)

take a look at wikipedia. here is a snip which may explain as folic acid is necessary for production of cells...... see below.
http://en.wikipedia.org/wiki/Folate
[edit] Biological roles

by Pennie (Nov 1)

Hello Sal and Zavie
I think the issue is about actual leukaemia and folic acid, and not the interaction with any particular drug regime. Perhaps we need to check this up with our specialists at

by zaviemiller (Oct 31)

Hi Sal,
I have been on Gleevec since 2001 and also on Folic Acid for 4 years. No ill effects. When I check them at the drug interaction sites, they indicate that there is no interaction between

by sal (Oct 31)

Hi, don't know whether anyone else has seen the news items about plans to add folic acid to bread. It mentioned that this would pose a risk to people with leukaemia but gave no futher details,
Category: Uncategorised

Replies: 3

Last updated: 1 November 2007
fehr on 28 October 2007

Category: Uncategorised

Replies: 2

Last updated: 29 October 2007

CLM and DVT
by fehr (Oct 29)

Debbie,
Thanks for that. I have significant leg pains, but I'm pretty sure that is due to the DVT and bursitis. 30/500 co-codamol helps, but is addictive (as I have found out!). I also have a

by Debbie (Oct 29)

John

I too experience leg pain. It is just in one leg also,in the lower part of the leg. I put it down to the Glivec as I didn't have any pain before I started witht the Glivec. I take

by fehr (Oct 28)

Is there a link between CLM and getting a DVT?
Seven months ago, just before I was diagnosed with CLM, I had a DVT in my calf. The circumstances were such that I just should not have had a DVT and
Category: Uncategorised

Replies: 2

Last updated: 29 October 2007
Rachel Baughen on 24 October 2007

Category: Uncategorised

Replies: 11

Last updated: 17 November 2007

newly diagnosed and not coping well
by skiinglaketahoe (Nov 17)

Rachel
I just wondered how you were getting on with the glivec?

I do hope that it is easier for you
Susan

by skiinglaketahoe (Oct 31)

Hi Rachel
I am glad that the diary helped however I have to tell you that I was NOT on any medication whilst doing those wonderful trips. Shortly after I started glivec we went to Barcelona and I

by Rachel Baughen (Oct 30)

Susan
I found reading your diary so helpful - it sounds as though you have coped with some very difficult side effects on Glivec and I do now wish you the very best with your mini BMT. I am

by fehr (Oct 28)

Hi Rachel,
I was diagnosed mid-April and I had the same problems of nausea and tiredness as you.

By the end of May it got too much, so I started taking the Glivec in two halves, one after
Category: Uncategorised

Replies: 11

Last updated: 17 November 2007
Moira on 23 October 2007

Category: Uncategorised

Replies: 3

Last updated: 24 October 2007

Cytogenetic Remission
by Diana Green (Oct 24)

Diana G

Hello all you other Autumn 06 diagnosees, and congratulations to Moira's husband on reaching CCR.
Hope you're all doing OK. I had my hosp appointment at Stafford yesterday and the doc

by sandy craine (Oct 24)

hi Moira,

thanks for updating us on your husbands great response to Glivec.

as Janet says, being PHneg is a great feeling
best wishes

Sandy

by Janet (Oct 23)

Hi Moira
Congratulations to your husband on achieving CCR!! It feels good when you get there doesnt it... I too was diagnosed in September last year, there are a few of us here who belong [

by Moira (Oct 23)

Hi everyone, it's been a while since I posted on the board but got great news today so felt the need to share. My husband was diagnosed with CML in Sept 06. Put on Glivec straight away. Reached
Category: Uncategorised

Replies: 3

Last updated: 24 October 2007
debbiesands on 20 October 2007

Category: Uncategorised

Replies: 2

Last updated: 22 October 2007

CMML
by sandy craine (Oct 22)

Debbie,

i have done a quick search on the WHO clinical trials portal
http://www.who.int/ictrp/search/en/
and found 2 trials that your father may be eligible for. see url's below. however they

by sandy craine (Oct 22)

hi Debbie,

it is difficult to advise you on CMML as it is a different disease to ph+ CML. however you may be able to find out more information on this disease and the options open to your

by debbiesands (Oct 20)

Hi All,
I'm hoping someone can give me some info. My Father was diagnosed with CMML July last year. About 9 weeks ago we were told he's condition was now acute. Since then he has been on chemo
Category: Uncategorised

Replies: 2

Last updated: 22 October 2007
skipd on 19 October 2007

Category: Uncategorised

Replies: 2

Last updated: 24 October 2007

Ferritin
by hcy0da (Oct 24)

Hi
I have the opposite problem and found when investigating it is not only the foods you eat but how you eat as well.
The body does not absorb iron very well and they recommend not drinking tea

by Paul Cooke (Oct 24)

Hi,
I searched for foods rich in iron on the web, came up with the following, which is advice on what to eat if anaemic.

It does give a list of foods rich in iron (bit general though) which

by skipd (Oct 19)

Hi

I was wondering if you know of a site that has a list of low iron foods, or a book? Due to my CML and AMN107 which cause me to have many transfusions my ferritin is quite high, My Onc has
Category: Uncategorised

Replies: 2

Last updated: 24 October 2007
fehr on 15 October 2007

Category: Uncategorised

Replies: 2

Last updated: 17 October 2007

Side effects database
by CHRISTINE MURPHY (Oct 17)

Hi John and Sandy

I think this is a brilliant idea. Having been involved since Brian was diagnosed in Feb 07 there is so much info that we need to source and if it could be itemised into

by sandy craine (Oct 15)

Hi John,

yes this is a good idea and i have been discussing this with another member of this group. your idea of a separate section with distinct headings is probably an easy way to tackle the

by fehr (Oct 15)

There are many posts on here asking for advice on coping with side-effects, often ones which have been covered before.
I have just posted on one treatment that worked for my rash. I hope it will
Category: Uncategorised

Replies: 2

Last updated: 17 October 2007
samantha on 13 October 2007

Category: Uncategorised

Replies: 9

Last updated: 20 October 2007

dasatinib
by RACHEL HALSALL (Oct 20)

Hi Carol and Steve and thanks for posting. Garys side effects are much improved. The previous side effects only really last ed for one day and since then Gary says he has felt very well, a bit foggy

by Carol (Oct 17)

Hi Rachel,
Gald to hear Gary has started on Dasatinib but sorry to hear about the side effects hopefully they will get better & improve or become bearable like Glivec you have both been very

by RACHEL HALSALL (Oct 17)

Well Gary started taking Dasatanib on Monday of this week and has headaches which he describes as 'like when you have a cold and your head is all blocked up'. Last night he also slept very badly as

by sal (Oct 16)

Hi Samantha

Rob sees Dr Patil at Dewsbury as well as Graham Smith. Have they recommended you see him now you're on Dasatinib? Rob went to see Helen for his pcr taken yesterday she said that at
Category: Uncategorised

Replies: 9

Last updated: 20 October 2007
MJS on 12 October 2007

Category: Uncategorised

Replies: 8

Last updated: 25 October 2007

New Baby Girl
by jaynelister (Oct 25)

Hi Matt, Many congratulations on the birth of chloe and much love to your family. Its great to hear such wonderful news.
Much Love
Jayne xx

by AdamH (Oct 15)

Hey there Matt
Congratulations on the birth of your baby girl Chloe, she looks gorgeous mate. Hope she brings you both lots of happiness and fun times - and you're both managing to get some sleep

by cmlblogger (Oct 15)

Matt - wonderful news :)
as the title says, your new life has just begun :)
Rob
rob - http://cmlblog.spaces.live.com

by (Oct 15)

Hello Matt
What brilliant news - Many Congratulations on the Birth of Chloe.
Wishing the three of you all the luck in the world and many years of happiness.
All The Best
Julie Valentine
Category: Uncategorised

Replies: 8

Last updated: 25 October 2007
mcgiv on 12 October 2007

Category: Uncategorised

Replies: 6

Last updated: 19 October 2007

glivec+rash
by mcgiv (Oct 19)

many thanks.Will tell son-in-law

by mcgiv (Oct 19)

Many thanks will tell son in law

by Paul Cooke (Oct 15)

This gel is a 'simple' emollient - no active constituents such as steroids, so would be ok for anyone wanting to avoid those, however, in the case of steroids applied to the skin, the milder

by fehr (Oct 15)

At the suggestion of my GP, I have been using Doublebase cream twice a day for the last two months and this has helped enormously with the rash.
The skin almost all over my body had become dry,
Category: Uncategorised

Replies: 6

Last updated: 19 October 2007
clare on 11 October 2007

Category: Uncategorised

Replies: 2

Last updated: 14 October 2007

pins and needles and fluid in the knees
by clare (Oct 14)

THANKS FOR THAT SUSAN

I WILL MENTION IT THE NEXT TIME I GO X

by skiinglaketahoe (Oct 11)

Hi Clare
Pins and needles can be a sign of fluid retention, they could also be caused by carpel tunnel syndrome. This is a compression of the nerve supplying the hand. If the pins and needles are

by clare (Oct 11)

hi

Ive,beenon gleevec now for 3 years and doing very well with my count staying zero .But over the last few weeks have been waking in the morning to numbness,pins and needles in my hands and a
Category: Uncategorised

Replies: 2

Last updated: 14 October 2007