You are here

Forum

yogiB on 2 July 2010

Category: Uncategorised

Replies: 1

Last updated: 3 July 2010

donation for your great work!
by sandy craine (Jul 3)

Dear Beth, thank you so much for your donation. It is greatly appreciated and I am touched that you have thought to support us rather than other -very worthy- charities.

Thanks again,

Sandy

by yogiB (Jul 2)

Hi Sandy

I have forwarded a cheque to help towards the running of this amazingly supportive site for we CMLers! I hope you find the money useful and know that you have my deep appreciation
Category: Uncategorised

Replies: 1

Last updated: 3 July 2010
teddyb on 4 July 2012

Category: Uncategorised

Replies: 2

Last updated: 5 July 2012

Dry skin around the eyes, and bruises that dont go away, advice please.
by teddyb (Jul 5)

Thanks for replying Sandy.
Last platelet count was 141, that was 6 days ago, 2 weeks before that i think they were 120.
I think i will have to try ARNICA cream.

I found two types available in

by sandy craine (Jul 5)

Hi TeddyB,
I think that the dry skin might well be a side effect. I recently met a long term imatinib user and noticed the skin around his eyes was very dry and cracked. Hopefully this will go away

by teddyb (Jul 4)

Hello from Norway.
Ive been on Glivec 400mg for almost 3 months now, and lately ive been having some issues i thought maybe you could help me with.
The first thing im wondering about is my skin
Category: Uncategorised

Replies: 2

Last updated: 5 July 2012
sam on 26 June 2010

Category: Uncategorised

Replies: 4

Last updated: 29 June 2010

privacy in the workplace
by sam (Jun 29)

the company director got back to me and said the company has a right to tell any employee of my illness ?

he has sided with my line manager and has not taken furhter action against her?

where

by sam (Jun 27)

hiya thankyou for your input

i am very upset by what she has done, i have emailed the company director who is her manager and put a formal complaint in about her so will have to be an

by Bhiru (Jun 27)

First up - what an appalling lack of judgement and empathy your manager has shown.

Just to give a brief answer to your dilema, it strikes me that the information that you have provided to

by Olivia (Jun 27)

I'm so sorry to hear about this - what a dreadful breach of confidence. I wonder whether your manager realises just how much she has upset you? I hope it will not affect your
Category: Uncategorised

Replies: 4

Last updated: 29 June 2010
Lorraine Rollo on 26 June 2010

Category: Uncategorised

Replies: 2

Last updated: 28 June 2010

Ten years today
by sandy craine (Jun 28)

hello Lorraine,

thanks for your post. It is good to read... for all of us and especially for the newly diagnosed. It has been an amazing decade for those with CML and for others with the sort of

by yogiB (Jun 26)

Thanks SO much for sharing that uplifting bit of info!

I have only been diagnosed for 7 months and one of the continual intrigues is to know ... who is out there, on Glivec, still surviving and

by Lorraine Rollo (Jun 26)

Dear All,

It is ten years ago today since I was first diagnosed with CML after volunteering to give blood and find out if I could be a bone marrow donor for a five year old girl who had AML and
Category: Uncategorised

Replies: 2

Last updated: 28 June 2010
karen on 23 June 2010

Category: Uncategorised

Replies: 4

Last updated: 24 June 2010

Results
by Richard42 (Jun 24)

Hi Karena

The difference could be explained by the difference between cytogenic testing and PCR, which look at slightly different things though they are comparable in most cases. It's

by karen (Jun 24)

Hi Sandy

That is the weird thing - he tells me I have reached CCR even though the results are not 0. etc and that is what confused me (and still is!)

K

by michael (Jun 23)

Are you on 100mg ?it could be time to go to 140mg to get you over the last hurdle?

by sandy craine (Jun 23)

Hi Karena, I understand why you are seeking zero's. As far as 1.945 and 1.452 are concerned there is really very little difference between the results. More the issue is that you have not
Category: Uncategorised

Replies: 4

Last updated: 24 June 2010
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