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Barbs on 10 March 2007

Category: Uncategorised

Replies: 1

Last updated: 10 March 2007

Message for Elizabeth
by Elizabeth Rees (Mar 10)

Emailing you privately. Which email address are you using ? The CML Support one is not valid any longer. I use erees@hotmail.com and info@cmlsupport.org.uk

Looking forward to seeing you

by Barbs (Mar 10)

Dear Elizabeth,

I know the forum's not for this, but my reply to your message has just come back again for the second time, it says that your account is temporarily suspended.

Have e-
Category: Uncategorised

Replies: 1

Last updated: 10 March 2007
Suzie Q on 9 March 2007

Category: Uncategorised

Replies: 2

Last updated: 10 March 2007

PCR RESULT
by Coyney (Mar 10)

Hi Suzanne,
Congratulations that's really good news, keep up the great work.
All the best,

Martyn
Please sponsor me!

by zaviemiller (Mar 10)

Hi Suzie,
Technically it means that you have achieved a 3 log reduction in your leukemia via a PCR test. This means that the amount of CML that you have in your body is 1,000 times less than when

by Suzie Q (Mar 9)

Finally, 14 months post diagnosis I have had my first PCR test and result which is 0.03. My doc sez this is a Major molecular remission and i was entirely shocked at what he said and more or less
Category: Uncategorised

Replies: 2

Last updated: 10 March 2007
kathy on 9 March 2007

Category: Uncategorised

Replies: 2

Last updated: 14 March 2007

anemia
by Elle (Mar 14)

Hya Kathy
My dosage was increased too 800mgs in Oct 2006. Since then my blood counts have been up and down. At the start of the year they dropped a fair bit. I became anaemic. I've not been given

by kathy (Mar 12)

hi,does anyone have any suggestions,thanks kathy

by kathy (Mar 9)

Hi all,had an appointment on wednesday and my latest bcr results were negative ,she did say i was becoming enemic and said it was through the higher dosage {gone from 400 to 600mg}.is there anything
Category: Uncategorised

Replies: 2

Last updated: 14 March 2007
arrowsc on 9 March 2007

Category: Uncategorised

Replies: 6

Last updated: 11 March 2007

PCR dissapointment
by arrowsc (Mar 11)

Thanks for all the positive responses, I think that after all my results after dx had been lowering and ' better than the last one ' this one just came as a bit of a blow as i was kinda hoping for

by ypoulton (Mar 10)

My pcr bounced about quite a bit last year it bounced up from0.003 to 0.15 which frightened me and my family since then it has been at zero for the last 3 it has taken me almost 4 years to get to

by Annie Kennedy (Mar 9)

Sorry that you are upset about your PCR results but they really can bobble around and that's just something we have to accept - PCR monitoring is not a perfect science. I was dx over 3 years ago,

by sue (Mar 9)

susan dickerson

Hi last time I went to see the consultant she told me that my PCR was a little up and advised me to go back in 8 weeks instead of 12 weeks to check my PCR sooner. Must admit it
Category: Uncategorised

Replies: 6

Last updated: 11 March 2007
sandy craine on 8 March 2007

Category: Uncategorised

Replies: 17

Last updated: 18 March 2007

CURED? my doctor says yes!!!
by Lesley (Mar 18)

It was really great to read your news, it makes everything we go through worth while. I am in the same boat as you, reduced intensity transplant and after my 2nd lot of donor lymphocytes (at 14

by Elle (Mar 14)

Hi Sandy
All the best. You deserve it!!!!!
Elaine

by Rio (Mar 12)

Hi Sandy iv just joined the website a few minutes ago but kestrel my carer has told me about you.

Iv heared that you are now free of cml and im really pleased for you and one day hopefuly

by CherylAnne (Mar 12)

Hi Sandy,
I wanted to take the opporutunity to congratulate you on this list to follow up the private e-mail. Such good news should be savored repeatedly;-)
As one of your many other friends said,
Category: Uncategorised

Replies: 17

Last updated: 18 March 2007
Elizabeth Rees on 8 March 2007

Category: Uncategorised

Replies: 1

Last updated: 9 March 2007

Karen Morris Memorial Trust - Karen's Home from Home
by marisa (Mar 9)

Hi All,
This is great!!
Remember how many horrible nights I spent in Hosptial trying to sleep on these stupid chairs whilst Chris was in....
This way carers and patients can get a bit of "normality

by Elizabeth Rees (Mar 8)

Steven has kindly composed a few lines on the Karen Morris Memorial Trust. Please take a look at the amazing work they have done. Karen's mother Sylvia is an inspirational woman and I wish her
Category: Uncategorised

Replies: 1

Last updated: 9 March 2007
jjhollis100 on 7 March 2007

Category: Uncategorised

Replies: 2

Last updated: 9 March 2007

Slow Coach!!!
by Annie Kennedy (Mar 9)

Hi - just to say I was dx over 3 years ago and had similar experience to your in the first year. It seemed that everyone else was reaching CCR in a few months and I was not - had all sorts of

by MJS (Mar 8)

Hello!
Just read your post and thought I'd reply seeing that I've gone through a pretty similar situation...
I was diagnosed in Oct 2005 and went straight onto 400mg Gleevec, my first PCR was 28%

by jjhollis100 (Mar 7)

Hello All
I'm now getting concerned about how quick or should i say how slow my CML is reducing, i had the results back from my BMB which shows i'm 35% PH+ this is after taking Glivec 400mg since
Category: Uncategorised

Replies: 2

Last updated: 9 March 2007
Bram on 7 March 2007

Category: Uncategorised

Replies: 12

Last updated: 12 March 2007

Hello to you all
by Rio (Mar 12)

Hi Bram im the lad that kestrel is looking after.Dont worry i felt awful at the time but taking glivec becomes part of your life as you take it on a daily routine.

I am 13 years old and i have

by barbara (Mar 10)

Hi Bram, Was devastated by your news. We have a mutual friend in John D.

I also have been touched by CML and although I can't for one minute know how you are feeling,I do know how your family

by Bram (Mar 8)

Thanks to you all for the overwhelming response. I might be contacting some of you for some more info on points raised so brace yourselves ;-)

by Steven D (Mar 8)

Welcome to the site nobody wants to join. I was DX Aug 2004 and went straight onto Glivec. Its an emotional roller coaster but be positive and all will be well.
Its early days but for your
Category: Uncategorised

Replies: 12

Last updated: 12 March 2007
skiinglaketahoe on 6 March 2007

Category: Uncategorised

Replies: 3

Last updated: 6 March 2007

Travel Insurance
by skiinglaketahoe (Mar 6)

Actually Jacky just rereading your post I am guessing that they won't cover you as the condition was pre-existing and your policy was under the old scheme. This is a new scheme from this April

by skiinglaketahoe (Mar 6)

Hi Jacky
Yes of course they do know about it. I was very upfront about it and as it so happens i do have private medical insurance with them so it is there on the screen.

If you want to chat

by Jacky (Mar 6)

Hi
This is very interesting.. We have a travel insurance policy through our bank account with Lloyds TSB which is with AXA. When my husband was diagnosed with leukaemia in June 2005 we obviously

by skiinglaketahoe (Mar 6)

Just to let everyone know that AXA PPP have a new scheme starting on April 1st. They are providing travel insurance for pre-existing medical conditions on a new scheme.
You do not have to have any
Category: Uncategorised

Replies: 3

Last updated: 6 March 2007
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