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Ali Loram on 22 June 2010

Category: Uncategorised

Replies: 5

Last updated: 23 June 2010

Reaction to all TKIs
by sandy craine (Jun 23)

Hi Ali,

this is a really bad reaction to dasatinib and is quite rare. It sounds like some form of myalgia -which is one of the side effects listed I think.

I attended a conference last

by ADJL (Jun 23)

Hi Ali,

So sorry to read that you're going through a tough period. I'm on Dasatinib and one of my biggest fears is exactly what you're going through- I can't imagine how scary

by skiinglaketahoe (Jun 23)

Hi Ali

I am sorry to hear that you are not able to tolerate the TKI's. I wasn't either; I had a variety of side effects albeit maybe not as severe as yours. I only tried glivec

by michael (Jun 22)

Transplant must be high on your option list so a donor search should be started to explore this avenue,that said how well the TKI are controlling your cml? perhaps other treatments might help
Category: Uncategorised

Replies: 5

Last updated: 23 June 2010
Ann Cantillon on 20 June 2010

Category: Uncategorised

Replies: 1

Last updated: 20 June 2010

Fund Raising for Leukaemia Research
by lynnsch (Jun 20)

What a fantastic effort - you must be so proud.

Good luck to them and so happy to hear that you are doing so well on Dasatinib.

Lynn

by Ann Cantillon (Jun 20)

As a relative new member of cmlsupport I have used the site many times for information and support. I was diagnosed with CML three years ago and my condition is being treated with Dasatinib after
Category: Uncategorised

Replies: 1

Last updated: 20 June 2010
angela on 18 June 2010

Category: Uncategorised

Replies: 1

Last updated: 21 June 2010

Two Eye Bleeds In 3 Days
by sandy craine (Jun 21)

Angela, if you are at all worried about this side effect and what might be causing it in your case then you should talk to you doctor and ask him to investigate or reassure you that there is no

by angela (Jun 18)

Hi Sandy

Just come back from Eastbourne watching the tennis. I carried my heavy case for a little while and the next day (Wednesday) got an eye bleed and then today again after carrying my
Category: Uncategorised

Replies: 1

Last updated: 21 June 2010
tadlaw on 18 June 2010

Category: Uncategorised

Replies: 7

Last updated: 12 July 2010

*** PAIN ***
by sandy craine (Jul 12)

Dear Tracey... if your son is resistant to the idea of acupuncture needles then there is the alternative method of accu-pressure which does not use needles but rather puts finger pressure on

by tadlaw (Jul 11)

Thanks for your thoughts John. That's my concern too. The doctors are aware of the potential for addition, but there seem to be few alternatives.

I'm looking into

by fehr (Jul 11)

Three years ago, I became addicted to codeine without realising until I stopped it and had withdrawal symptoms. I was given it again (and morphine) during a recent episode of surgery

by tadlaw (Jun 26)

Thanks so much Sandy for suggesting accupuncture. I'd love to read any and all information you received at the conference.

I have been asking my local consultant as well as Dr. Druker
Category: Uncategorised

Replies: 7

Last updated: 12 July 2010
bobosbo on 18 June 2010

Category: Uncategorised

Replies: 1

Last updated: 21 June 2010

Dasatinib & Blood Levels
by sandy craine (Jun 21)

Dear Bob... you could look at it this way- dasatinib is doing its job well, better than imatinib in you case! Looking at you blood counts I would say that the only one that is low is the platelet

by bobosbo (Jun 18)

Since starting on Dasatinib my blood levels have varied with every test that I have had, & show no consistent pattern as to why this should be so. I feel absolutley fine, but just wondered if
Category: Uncategorised

Replies: 1

Last updated: 21 June 2010
Vangogh on 18 June 2010

Category: Uncategorised

Replies: 6

Last updated: 21 June 2010

BCR/ABL Results
by sandy craine (Jun 21)

Hi Tony..... I am just back from the New Horizons CML/GIST patient advocate meeting in Vienna so I am a little late in congratulating you, but I would like to wish you many more zero's in

by Vangogh (Jun 19)

Thanks for you really supportive replies. My eye seems a little better. Liver function tests normal so a couple of G&T's tonight methinks. Shame about the footy Lynn. It

by tadlaw (Jun 18)

My son was dx'd on 5-22-2008. He's had a 3 log reduction, but has only reached .071 on PCR. Both you and he are quite low - but you're a little better! It's great

by Don Adkins (Jun 18)

Hi Tony,

Great results! Celebrate, and good look with your future results, You are now chasing 0's. Take care of that eye.

Warmest Regards,

Don
Category: Uncategorised

Replies: 6

Last updated: 21 June 2010
rho68 on 16 June 2010

Category: Uncategorised

Replies: 7

Last updated: 8 May 2012

Spleen Pain After Being On Gleevec...
by teddyb (May 8)

Glad to hear your Dr said it could hurt a bit while mending.

I too have had some discomfort from the spleen the past 2 days, i also had this 2-3 days prior to my first checkup about 1.5 weeks

by rho68 (Jun 18)

That's great news Alison ! Congrats !

by alison28 (Jun 18)

hi!

things do take a while to settle completley, all the nerves will be mending and nerve damage can hurt and take a while to get back to normal.

i went to manchester yesterday for my checkup

by rho68 (Jun 17)

Hey Alison, I had quite a bit of pain at first too but it has pretty much stopped. It only happens every now and then but I've been on Gleevec for a year and 3 months, so it's really
Category: Uncategorised

Replies: 7

Last updated: 8 May 2012
liz on 15 June 2010

Category: Uncategorised

Replies: 7

Last updated: 17 June 2010

Digestive problems
by liz (Jun 17)

Thanks johnh, i will try all of these. Hope you're well :-)

by johnh (Jun 17)

I have struggled with this ever since I started on Glivec. Over the years I have discovered the following to be very helpful:

1. One Lansoprazole every morning before breakfast.

2

by liz (Jun 16)

Thanks for the comments everyone. Glad to no am not alone!!!! It is a small price to pay.

Hope everyone stays well. x

by Richard42 (Jun 16)

Hi Liz

I think it's probably a bit of both at least in my case. I used to get reflux before Glivec but it is certainly worse with it, and at times can be quite bad. Some foods make it worse
Category: Uncategorised

Replies: 7

Last updated: 17 June 2010
alison28 on 14 June 2010

Category: Uncategorised

Replies: 5

Last updated: 15 June 2010

other side effects rom cml?
by jacqui from Colchester (Jun 15)

Hi Alison

I have been great apart from the initial week or so of painful joints - be confident and dont cancel your wedding - you are going to be fine - although its hard to believe

by alison28 (Jun 15)

hi jacqui

i hope you are well. you say you have been on dasatinib since september, how have you been on that? have you had a bmb to see if its working yet?

im getting few side effects so

by alison28 (Jun 15)

thank you beth and jacqui for your comments. i think the side effects are very similar to dasatinib beth and fluid retention is in there too!

i will go to my GP and ask about it, feels like my

by yogiB (Jun 14)

Hi Alison

Sorry to hear about the pains - what a pain for you!

When I first took Imatinib, all my joints and muscles and bones ached - especially my knees - it was hard to bend down, so maybe
Category: Uncategorised

Replies: 5

Last updated: 15 June 2010
sandy craine on 13 June 2010

Category: Uncategorised

Replies: 2

Last updated: 16 June 2010

Video page
by sandy craine (Jun 16)

Hello Olivia.... I think you are right and for most of us the science- molecular biology- can take a lot of concentration to understand. However, I find that if you keep going back to the points

by Olivia (Jun 16)

Thanks for putting these up, Sandy. I found them very interesting, even though I didn't fully understand all the science (things have changed just a little since my schooldays - and I

by sandy craine (Jun 13)

Please take a look at the video and webcast page as I have uploaded some interesting stuff... mainly of video lectures by Brian Druker which are highly informative.

Sandy
Category: Uncategorised

Replies: 2

Last updated: 16 June 2010
sandy craine on 10 June 2010

Category: Uncategorised

Replies: 7

Last updated: 1 July 2010

More delay on FAD
by Pennie (Jul 1)

Thank you for this information John. I was at Kings yesterday, and still no answer from my PCT about funding to change to Dasatinib. This is after appeal from consultant and GP, who is on

by johnw1001 (Jun 30)

Please see the content of my previous representation to my MP Anne Milton (now a Junior Minister of Health) -posted in this same thread earlier in the month.I sent an Email to Anne Milton on 8

by bobosbo (Jun 15)

My wife Gill sent an email to NICE, asking when we will hera about the FAD & revieved the following reply:

Thank you for contacting the National Institute for Health and Clinical Excellence

by johnw1001 (Jun 14)

For some time I have been lobbying my local MP over the availability of dasatinib and nilotinib and whilst in opposition she was very helpful in framing Parliamentary Questions to the previous
Category: Uncategorised

Replies: 7

Last updated: 1 July 2010
alison28 on 10 June 2010

Category: Uncategorised

Replies: 10

Last updated: 15 June 2010

what food?
by sandy craine (Jun 15)

Hello Jacqui,

please don't worry about the reference to 'acid' forming foods. ie. proteins. The discussion was based around whether acid forming should be combined with alkaline

by yogiB (Jun 14)

hi Jacqui

According to what I have researched - hard cheeses are not great (especially when combined with bread! I personally only eat very little soft white, goat or feta cheese. There is

by jacqui from Colchester (Jun 14)

I eat 75gramms of cheese every day is this bad for you

by sandy craine (Jun 14)

Hi Beth...... yes it is true what you say. A diagnosis of cancer (no matter what kind, and there are many) delivers such a blow to the 'soul' that it can be very difficult to recover from
Category: Uncategorised

Replies: 10

Last updated: 15 June 2010
Pennie on 10 June 2010

Category: Uncategorised

Replies: 7

Last updated: 23 June 2010

PCT refusal
by skiinglaketahoe (Jun 23)

Pennie,

So sorry to hear of the latest setback. I only hope that this is a temporary set back. I am sure that you don't need this hassle but keep fighting.

Please let me know how

by sandy craine (Jun 13)

Hi Karena, yes that is what it means... we will not see the FAD published until further notice!

Sandy

by karen (Jun 10)

Hi Sandy

Does that mean we won't be getting any news next Thursday now?

K

by sandy craine (Jun 10)

Dear Pennie,

get in touch with Kate Spall who is expert at getting people through exceptional treatment appeals. She has won over 200 cases so far and is very committed.

I think you might take
Category: Uncategorised

Replies: 7

Last updated: 23 June 2010
sandy craine on 10 June 2010

Category: Uncategorised

Replies: 1

Last updated: 11 June 2010

ASCO update from Cheryl-anne
by Richard42 (Jun 11)

Very interesting. Some of the bare statistics probably should be read with a bit of caution, I think, especially some of the IRIS and real life vs IRIS figures because one needs to

by sandy craine (Jun 10)

Cheryl-Anne has sent her update from ASCO.. see below.

Sandy

:: ASCO - Novartis Satellite Symposium Report

:: Posted by Cherylanne

:: In Forum: 'Conferences
Category: Uncategorised

Replies: 1

Last updated: 11 June 2010
angela on 10 June 2010

Category: Side effects

Replies: 18

Last updated: 22 June 2015

Eye Bleeds
by malisia (Jun 22)

good day Angela did you have retinal bleeding? if so what did you do to stop the bleeding , what can be done by the doctors and any information on how you got through this will be appreciate
thank

by malisia (Jun 22)

hi neel my husband is having bleeding in the retina what did you do or how did you get the bleeding to stop

by angela (Aug 7)

Hi Neel, I used to have about 2 a month, I used

to get a pain above my eye then it would bleed. I've now

been off Glivec for 2 months and have had more bleeds

I'm afraid it's a not

by Dennis (Jul 17)

Bleeding in the white of the eye. That's what I've had - and I think that's what the majority of CML'ers have experienced.
Category: Side effects

Replies: 18

Last updated: 22 June 2015
michael on 9 June 2010

Category: Uncategorised

Replies: 4

Last updated: 13 June 2010

BMT
by michael (Jun 13)

Some good pointers thankyou for taking the time to post

Michael

by sandy craine (Jun 10)

Hi Michael,

First I wish you the best for your upcoming SCT. When I was at HH having my sct in 2003, I found that I relied on music/ambient sounds to help with transporting myself elsewhere. I

by Pennie (Jun 10)

Books on CDs are good for the days when a real book feels way to heavy. Note pad and pencil, for messages home about washing, treats etc that you think about in the middle of the night.

by alison28 (Jun 10)

my gosh im the worlds worst when it comes to packing!!!!

when i came home from my recent stay a had 3 hospital carrier bags, my hold all and a rucksack!!!

i took a puzzle book, small
Category: Uncategorised

Replies: 4

Last updated: 13 June 2010
chrissbb on 8 June 2010

Category: Uncategorised

Replies: 2

Last updated: 8 June 2010

Info sent to me regarding Glivec Vs 2nd line TKI's.
by sandy craine (Jun 8)

Dear Chris,

thanks for posting this article. You might be interested to read other abstracts from ASCO 2010 which I have posted on both the Home Page and under the conferences page - link on

by bobosbo (Jun 8)

Thanks for posting this Chris.

This just backs up the general feeling that one day the 2nd generation drugs will be the frontline drugs of choice, & that NICE are living in a different

by chrissbb (Jun 8)

I recieved this information from Drugs.com with me been listed on their website as been a Glivec user.

Not sure if anyone else is on the list, but here is what it was.

http://www.drugs.
Category: Uncategorised

Replies: 2

Last updated: 8 June 2010
ian hinley on 7 June 2010

Category: Uncategorised

Replies: 15

Last updated: 24 December 2010

Help with PCR results
by ian hinley (Dec 24)

Hopefully the trend will be my friend and the BMB is signalling a greater reduction in the future months, years :)

by Vangogh (Dec 24)

Hi

I have just recieved my latest BCR/ABL results from Kings. After 2.5 years of reduction I seem to have hit a plateau.

June 2010.. 0.029%. Sept 2010. 0.036% . Dec 2010 0.037

by michael (Dec 24)

Thats a great BMB result,please remember you bone marrow cells are all new young cells,I would think of it as a latest news upbate.

The cells in your blood however can be up to 3 months old ,I

by ian hinley (Dec 24)

I have just had my results back form my Nov 23rd PCR test and it seems it has gone up to 0.436 from 0.293. There are numerous reasons for this I believe, bad sample, the previous reading
Category: Uncategorised

Replies: 15

Last updated: 24 December 2010
sandy craine on 7 June 2010

Category: Uncategorised

Replies: 3

Last updated: 8 June 2010

Survey-
by karen (Jun 8)

Just tried to do it and if you are over 30 with cancer they now have enough people!

by sandy craine (Jun 7)

Sorry Karena... I forgot to update this page during the changeover.

PO BOX 56213

LONDON

N4 4WF

contact email:

cmlsupportgroup@gmail.com

by karen (Jun 7)

Hi Sandy

I can't find the contact details on the 'contact us' page - am I looking in the wrong place?

K

by sandy craine (Jun 7)

Opinion Health, a healthcare market research firm based in the UK, is carrying out a study on behalf of a leading specialist homecare company who would like a better understanding of
Category: Uncategorised

Replies: 3

Last updated: 8 June 2010
sandy craine on 4 June 2010

Category: Uncategorised

Replies: 1

Last updated: 4 June 2010

FAD
by Jed (Jun 4)

Dammit. I was kind of hoping that this would be delayed until the new government clarified it's plans on cancer drugs (and, from what I understand, the future of NICE!).

Still,

by sandy craine (Jun 4)

Dasatinib and nilotinib for imatinib-intolerant chronic myeloid leukaemia

I have just been informed that the FAD for the above appraisal will now be sent Thursday 10 June 2010
Category: Uncategorised

Replies: 1

Last updated: 4 June 2010