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sandy craine on 3 March 2007

Category: Uncategorised

Replies: 2

Last updated: 6 March 2007

Milk Thistle counters drug related liver toxicity
by Diana Green (Mar 6)

Diana G

Hello there! I began taking milk thistle shortly after starting Glivec in December on the advice of the homeopathic doc who is treating me in parallel with the haematologist. The

by Basil from RSA (Mar 4)

Hello Sandy,
Thank you for this information but now I am a little confused.

During September 2006 I was in London and my wifes' cousin introduced me to Milk Thistle.

He swears by it and

by sandy craine (Mar 3)

Cancer Adjuvant Therapy
Silymarin potently suppressed NF-kB, but did not affect TNF-alpha-induced NF-kB, demonstrating a pathway-dependent inhibition by silymarin. It appears the inhibitory effect
Category: Uncategorised

Replies: 2

Last updated: 6 March 2007
skiinglaketahoe on 3 March 2007

Category: Uncategorised

Replies: 2

Last updated: 10 March 2007

my treatment
by skiinglaketahoe (Mar 10)

Val and David
Thanks for your kind words. I hope that the harvest went well and that they got enough cells, do I remember that she had it done before and they didn't quite get enough?

My

by David (Mar 4)

Susan
Val has just been off Glivec for three weeks in preparation for a second attempt at a stem cell harvest at HH last week. For the two weeks before she started the GCSF injections, she felt

by skiinglaketahoe (Mar 3)

Hi I thought that I would just update as to my treatment saga as this week marked my 2 year diagnosis.
I am currently having absolutely no treatment - and feeling fantastic.
I am intolerant to both
Category: Uncategorised

Replies: 2

Last updated: 10 March 2007
Elizabeth Rees on 28 February 2007

Category: Uncategorised

Replies: 1

Last updated: 28 February 2007

Official Programme for meeting in Lyon
by Barbs (Feb 28)

Just wanted to add that I could help out with accomodation, could take a few people here, I only live half an hour away from the conference centre.

Barbara

by Elizabeth Rees (Feb 28)

I have just uploaded the official programme for the pre EBMT meeting Patient/Family Day. The programme promises a very informative day. Prof John Goldman is speaking in the leukaemia workshop.
Category: Uncategorised

Replies: 1

Last updated: 28 February 2007
judithomas on 13 April 2007

Category: Uncategorised

Replies: 3

Last updated: 14 April 2007

I really need some help - CML in CSF
by Elizabeth Rees (Apr 14)

Hi Judy

Have emailed.

E x

by judithomas (Apr 14)

Thanks for responding Elizabeth. The leukaemia in the cns came back a couple of months ago. they gave several triple intrathecals, but although this helped the leukaemia counts, it suppressed his

by Elizabeth Rees (Apr 13)

Been meaning to email. Carol and Steven said that they saw you both at HH on Wednesday and how well Paul looked. Do I understand correctly that they are planning to give him radiotherapy to the

by judithomas (Apr 13)

Sorry - I first have to apologise for not being a regular visitor/contributor to this website. For those that know of us, Paul now has the leukaemia yet again in the spinal fluid and is receiving
Category: Uncategorised

Replies: 3

Last updated: 14 April 2007
KennyD on 28 February 2007

Category: Uncategorised

Replies: 7

Last updated: 3 March 2007

Leg aches
by kestrel (Mar 3)

I think our consultant said that coke interferes with the absorption of imatinib, but I will check next time we go to Hosp.

kestrel

by keith Pratt (Mar 1)

Hi Kenny

Used to get cramps in fingers on occaissions wih Glivec, nothing regular, just happened whenever it felt like it. Dasatinib does not have this effect, has others, but not this one.

by Janet (Mar 1)

Hi Kestrel
Yep it's the caffeine in coke drinks that is better avoided. I have been advised to avoid anything containing caffeine close to the time of swallowing the little orange bomb. Apparently

by sandy craine (Mar 1)

hi kestral,

i have not heard of any contra-indication between cola and glivec, but it would be worth investigating the source of this idea as there are many people who drink cola/other fizzy
Category: Uncategorised

Replies: 7

Last updated: 3 March 2007
MJS on 27 February 2007

Category: Uncategorised

Replies: 5

Last updated: 1 March 2007

Contact - Fundraising for CML Support
by sandy craine (Mar 1)

hi matt, thanks for this suggestions we are looking into it and will probably join up.

sandy C ;o)

by MJS (Feb 28)

Hi Elizabeth,
Sorry, didn't realise there was a joining and maintainence fee for JustGiving... :)
Let me know what you and Sandy think about joining as I will be doing a charity event every year -

by Elizabeth Rees (Feb 27)

Hi Matt

I just had a look and it seems we have to join and pay £20 per month to be a member. We operate on a very low budget and I don't believe we can commit to this right now. I will have a

by MJS (Feb 27)

Hi Elizabeth,
I've just nominated this charity and they replied to say they will get in contact to add you to the "Charity List".
They've given me this link to speed up the process - http://www.
Category: Uncategorised

Replies: 5

Last updated: 1 March 2007
keith Pratt on 26 February 2007

Category: Uncategorised

Replies: 14

Last updated: 8 June 2014

Eye Op
by darley (Jun 8)

When I had total body irradiation as preparation for bone marrow transplant 19 years ago, I was told that cataracts would be a certain inevitable consequence.
I had both eyes done this past year.

by Fiona (Jun 8)

My sister had just had her eye removed due to constant problems since her dx on 3rd may 2013

She had the BMT on 10th Jan 2014!!

She has just been told that the biopsy of the removed eye

by ajanwood (Mar 28)

Hi Keith, as it's now a month since your op, just thought that I'd 'see' how you're getting on.

Julie

by ajanwood (Mar 6)

Hello everyone, my name is Julie. I had my transplant for CML on 11th March 1987, so it will be 20 years on Sunday.

I have just seen a consultant (again) about having my cataracts removed, and
Category: Uncategorised

Replies: 14

Last updated: 8 June 2014
Volsan on 23 February 2007

Category: Uncategorised

Replies: 3

Last updated: 6 March 2007

CML and thyroid cancer
by Elizabeth Rees (Mar 6)

Sorry but I have drawn a blank. All those doctors I approached have not come across such a case. I will keep asking though.

Good luck.

Elizabeth

by philcowtan (Mar 2)

Valeiano,
I do not have Thyroid cancer but do take thyroxin alongside Glivec. Thyroid was knocked out with Radiotherapy. I do not have any side effects from taking both of the drugs together.
I

by Elizabeth Rees (Feb 25)

Hola Valeriano

I have made some enquiries and will get back to you as soon as I get a reply.

With best wishes

Elizabeth

by Volsan (Feb 23)

Hi,

This message is for the peoople whit CML and Thyroid cancer.
I need to know how your thyroid cancer has been monitored since you've

been treated with Gleevec for the CML.
Basically
Category: Uncategorised

Replies: 3

Last updated: 6 March 2007
MJS on 22 February 2007

Category: Uncategorised

Replies: 6

Last updated: 23 February 2007

Fast Metabolism
by MJS (Feb 23)

Thanks for the response...
My doctor says he sees quite a few CMLers on Gleevec in Glasgow and before he changes anything (doses, medication, etc) he is always in contact with Professor Hollioake

by Janet (Feb 23)

Hi all
I think I have been reading about this test on some other boards. If its the same one, and it sounds like it is cos it measures the concentration of glivec in the blood, it is called a blood

by Barbs (Feb 23)

Hi Matt,

they've been measuring Glivec concentrations in blood for quite sometime now here in France. Maybe it's also possible in the UK?

I believe you're treated in Scotland? Dr

by Nancy C. (Feb 22)

Also meant to add, that there is one place in the US that you can actually measure the blood levels of Gleevec...this has been a trade secret of Novartis. I read recently that this is to become
Category: Uncategorised

Replies: 6

Last updated: 23 February 2007
Barry Allsop on 20 February 2007

Category: Uncategorised

Replies: 1

Last updated: 20 February 2007

Glivec Break
by Barbs (Feb 20)

Dear Barry,

I once had to stop my Glivec for 5 weeks due to low counts, my Dr started me straight back on 400mg, maybe yours is worried about your liver & wants to see how it tolerates the

by Barry Allsop (Feb 20)

Hi All
I have recently had a two week Glivec break after high readings for my liver both from Hammersmith and my local hospital, in Lipids I think ,if that is the correct term. My liver is now OK
Category: Uncategorised

Replies: 1

Last updated: 20 February 2007
Coyney on 17 February 2007

Category: Uncategorised

Replies: 5

Last updated: 22 February 2007

Shingles!
by Des (Feb 22)

I had shingles almost exactly a year ago, and sorry to say the really acute pain lasted 2 months at least and has left peripheral nerve damage, despite immediate treatment with acyclovir.

by Parmjit (Feb 20)

Hi Martyn
Haven't posted in a while. I was sorry to learn that you were suffering from Shingles. Hope the valaciclovir works effectively for you and that you get to enjoy your snowboarding trip.
Max

by skiinglaketahoe (Feb 17)

Sorry to hear that you have shingles, Martin.
On a general note does anyone know if CML sufferers should steer clear of kids with chicken pox - are we more likely to catch something from them.
One

by Coyney (Feb 17)

Hi Elizabeth,
Thanks for the quick reply. I didn't realise shingles could be such a painful experience. I'm hoping it doesn't get that bad, the Dr said hopefully the Valacyclovir will nip it in the
Category: Uncategorised

Replies: 5

Last updated: 22 February 2007
sandy craine on 15 February 2007

Category: Uncategorised

Replies: 2

Last updated: 20 February 2007

Sal- Rob's pcr
by sandy craine (Feb 20)

hi sal,

well this is a difficult situation for you.... having to watch/advise as opposed to act/be proactive is hard and i am sure a lot of the 'carers' on this site will understand only too

by sal (Feb 19)

Thanks Sandy,Will have to have another go, unfortunately it is complicated by the fact that I want to be proactive and Rob is happy to let things go on as they are. He's a very laid back sort of

by sandy craine (Feb 15)

"could someone please explain to me where a pcr of 3.7 % is in terms of CCR/MMR."

...................

hi sal,

3.7% is regarded by hh doctors as PH+...

anything below 1.5% is
Category: Uncategorised

Replies: 2

Last updated: 20 February 2007
teresa on 14 February 2007

Category: Uncategorised

Replies: 3

Last updated: 16 February 2007

Donor Matches
by teresa (Feb 16)

Thank you both very much for sharing your experiences, much appreciated

Very Best to you all

Teresa

by Jacky (Feb 14)

I am not myself a CML patient, but my husband Maurice Carter is. We thought it would be good to let you know that he has just undergone a transplant, i.e. 28.09.2006, with an unmatched donor. Our

by kestrel (Feb 14)

Our 13 year old has no sibling donor and the register has come up with a 90% matched potential donor. We were told by our Consultant that success rates for 100% sibling donor transplants are about

by teresa (Feb 14)

Being without a sibling donor I have a few questions I would be grateful for help with- Is a donor always 100% match? If so what is the difference in effect between a stranger and a sibling? Is a
Category: Uncategorised

Replies: 3

Last updated: 16 February 2007
suzanne on 12 February 2007

Category: Uncategorised

Replies: 7

Last updated: 15 February 2007

NICE review of imatinib
by sandy craine (Feb 15)

"I was referred by my doc after initial consultations about my PCR remaining at around 2.5%, to be moved onto Nilotinib. However, I've just found out that I don't qualify because I attained CCR but

by MJS (Feb 15)

Hi Sal,
I'm not as clued up as alot of people on the correct terms but thought I'd give you info based on my experience...
I achieved a PCR of only 2.8% at 12 mths (600mg Gleevec). The only way to

by suzanne (Feb 14)

Thanks Sandy. That is extremely reassuring.
Sue x

by sal (Feb 13)

Hi could someone please explain to me where a pcr of 3.7 % is in terms of CCR/MMR.

This was Robs 18 month result. he went yesterday for bloods taken for his 21 month test. he was told if the
Category: Uncategorised

Replies: 7

Last updated: 15 February 2007
Elizabeth Rees on 11 February 2007

Category: Uncategorised

Replies: 1

Last updated: 14 February 2007

CML Learning Objectives - Drs Druker/Talpaz/Sawyers
by Paul Cooke (Feb 14)

A very interesting read!
I was particularly interested in the comments upon the reported possible links between Glivec and cardiotoxicity.

It appears that the risks associated with Glivec

by Elizabeth Rees (Feb 11)

This conference write up is free to all but you do have to register to have access. A must for everyone who wants to know more about CML and Clinical Options.

Click below - then click on Begin
Category: Uncategorised

Replies: 1

Last updated: 14 February 2007
Steven D on 10 February 2007

Category: Uncategorised

Replies: 4

Last updated: 14 February 2007

Travel Insurance with a bank account.
by Barry Allsop (Feb 14)

Elizabeth
Many thanks for the in formation about Milk Thistle. I will give it a go.
Thanks
Barry

by Elizabeth Rees (Feb 14)

Hi Barry

Have you tried taking Milk Thistle to help your liver metabolise Glivec ? Milk Thistle is a herbal remedy which helps the liver to clean itself. I took it when I had some liver

by Barry Allsop (Feb 13)

Barry Allsop
I have had good treatment from Lloyds TSB with travel insurance. They likewise cover me for world travel on an annual basis with my Gold Account. They wanted to know full details but

by RACHEL HALSALL (Feb 13)

Thanks for the info Steve. We have always accepted that we will not be covered for Gary's CML but have always travelled within Europe, taking an E111 with us. We just decided that IF anything went
Category: Uncategorised

Replies: 4

Last updated: 14 February 2007
Peter Miles on 8 February 2007

Category: Uncategorised

Replies: 1

Last updated: 9 February 2007

UK Transplant Games - Edinburgh July 2007
by sandy craine (Feb 9)

hi peter,

how about sending us some photo's of this event .. with you in them of course ;o)

we can upload them on our photo section.

sandy C ;o)

by Peter Miles (Feb 8)

Hi Everybody

This year's UK Transplant Games take place in Edinburgh at the end of July.

Please visit their website at the following address

http://www.transplantsport.org.uk/
Category: Uncategorised

Replies: 1

Last updated: 9 February 2007
David Morton on 8 February 2007

Category: Uncategorised

Replies: 9

Last updated: 20 February 2007

Day 365 post transplant
by Parmjit (Feb 20)

David
Great news on your first birthday! Hope you celebrated well. Max is awiting news of when he is likely to undergo his immunisations having just returned from a school ski trip. He hasn't

by sandy craine (Feb 9)

hi david..... great news and good reason for you to celebrate this 1 year milestone.

i wish you many more celebrations to come.

love,

sandy C ;o)

by Maurice H Carter (Feb 9)

Congratulations David. I am so pleased everything is going so well. Your diary was so helpful to me during my own transplant and I really enjoyed meeting you at the Royal Free.

by Elizabeth Rees (Feb 9)

Hi David

I'm approaching my two year anniversary and it does feel like such a major achievement, I'd never pictured myself doing so amazingly well after all my problems two years later
Category: Uncategorised

Replies: 9

Last updated: 20 February 2007
Linda Corcoran on 8 February 2007

Category: Getting help

Replies: 3

Last updated: 7 August 2015

Support Groups
by Moirah (Aug 7)

Hi
I am newly diagnosed live in Liverpool please can I ask when and where the support group is?

Xx

by sandy craine (Feb 9)

dear linda, good to see you posting here at last. i am also really glad to hear that you have made contact with other cml patients in liverpool.

it is great to hear that the liverpool group is

by Peter Miles (Feb 8)

Hi Linda

Pleasure to meet you last night. Congratulations on your first posts!

I can certainly endorse what Linda says about support groups either on-line or local. If you are not sure

by Linda Corcoran (Feb 8)

Hello fellow CML'ers Today is the first day I have posted. I was diagnosed last August and am doing well on Glivec (so far so good anyway!)and after a few months of readjustment and despite
Category: Getting help

Replies: 3

Last updated: 7 August 2015
Peter Miles on 7 February 2007

Category: Uncategorised

Replies: 2

Last updated: 8 February 2007

Hi Julie and Linda
by Linda Corcoran (Feb 8)

Hi Peter and Julie

It was very spooky to finally pluck up the courage to post only to find a nice note from you on the forum.

It was great to meet you too (and you Julie!) and I am so

by (Feb 8)

It was lovely to meet you yesterday after all this time. So sorry that I didnt get much chance to speak to you - I had to go and get an ECG done after my appointment and didnt get chance to tell

by Peter Miles (Feb 7)

Hi Julie and Linda

Absolute pleasure to meet you both today in Liverpool. Good luck with your treatment - you are both looking wonderful.

Keep in touch

Peter
Category: Uncategorised

Replies: 2

Last updated: 8 February 2007