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lisad123 on 8 October 2010

Category: Uncategorised

Replies: 6

Last updated: 11 October 2010

woo hoo Hammersmith here we come! have a few questions
by Janet (Oct 11)

Hi Lisa - I've seen Dr Marin as well, and would thoroughly agree with all the comments re his huge knowledge, enthusiasm and professionalism. You will be well-looked after. I am really

by Richard42 (Oct 11)

Hi Lisa

He's great. He saw me at short notice last year after I was first diagnosed by my local hospital and I had an unusual and rare transcript/variant. He dealt with

by Sarah R (Oct 11)

Dear Lisa

Bill has seen Doctor Marin quite a few times. He is extremely knowledgable and heads up the clinical trials at the HH. I'm sure he will have a plan of action for your husband and

by lisad123 (Oct 11)

Dr Marrin wants to see Darren himself so now we have to wait till next Tues. I guess its good that we are seeing the top man, but hate waiting!

whats he like?
Category: Uncategorised

Replies: 6

Last updated: 11 October 2010
yogiB on 8 October 2010

Category: Uncategorised

Replies: 2

Last updated: 9 October 2010

CCR after 11 months on Glivec!
by sandy craine (Oct 9)

Dear Beth, this is such good news and a big psychological boost for you I am sure. Keep on going and you will no doubt add more zero's over time. Well done and best wishes,

Sandy

by lynnsch (Oct 9)

Hi Beth, thats fantastic news! You must be delighted.

So happy you've made it to the Zero Club

by yogiB (Oct 8)

After all the recent scares - HGB dropping to 5, 6 units of blood etc, my latest tests show no detectable Philadelphia Chromosome in the 20 looked at! CCR!

Zavie has made me a member of his ZERO
Category: Uncategorised

Replies: 2

Last updated: 9 October 2010
Ali Loram on 8 October 2010

Category: Uncategorised

Replies: 1

Last updated: 8 October 2010

One for the ladies
by sandy craine (Oct 8)

Dear Ali,

I would suggest that you try natural progesterone cream. I found this very very helpful, especially for 'hot' flushes- gone in 10 days.

It is much safer to use a cream rather

by Ali Loram (Oct 8)

Having had the most awful sweats the last few month I asked my GP to do a blood test to check my oestragen levels. The results came back to say I am menopausal. As HRT is not something I would
Category: Uncategorised

Replies: 1

Last updated: 8 October 2010
Steven Davies on 7 October 2010

Category: Uncategorised

Replies: 7

Last updated: 10 October 2010

6 Years on
by Steven Davies (Oct 10)

Hi Angela

Thank you for your good wishes. It was really nice to see you again.

Could you email us privately with your email address as we seem have misplaced it.

Many thanks

by angela (Oct 10)

Hi Steven,

What fantastic news. I'm really pleased for you and Carol. Lovely seeing you again on Thursday - so pleased for

you both.

Take care

Angela

by lynnsch (Oct 9)

That is amazing news, and so happy to hear that the side effects have reduced.

Hope I get to see you and Carol soon

Lynn x

by Steven Davies (Oct 8)

Hi Ian Thanks for your congrats. I was 100% on dx back in August 2004 by beginning march 2005 it was 9.7 by pcr then end March 2.5.By August 2005it was 0.950 then kept going down then stabilising
Category: Uncategorised

Replies: 7

Last updated: 10 October 2010
yogiB on 7 October 2010

Category: Uncategorised

Replies: 1

Last updated: 8 October 2010

CML: The Current Landscape - an interview with Dr. Jorge Cortes
by sandy craine (Oct 8)

Hi Beth,

I have added this to the video/webcast page- scroll down to view

Best wishes,

Sandy

by yogiB (Oct 7)

http://www.vimeo.com/15599871
Category: Uncategorised

Replies: 1

Last updated: 8 October 2010
yogiB on 6 October 2010

Category: Uncategorised

Replies: 2

Last updated: 6 October 2010

Please speak up!
by yogiB (Oct 6)

I bet it made you feel better just writing it!

xb

by lisad123 (Oct 6)

well said, heres hoping my letter makes a change too, would hate for someone else to be treated as bad as we were.

by yogiB (Oct 6)

Following Lisa's report on writing to the Chief Exec of the hospital, I would also like to share something about speaking up in order to make changes happen (hopefully!)

Four weeks ago I was
Category: Uncategorised

Replies: 2

Last updated: 6 October 2010
TheCoopers on 6 October 2010

Category: Uncategorised

Replies: 4

Last updated: 15 October 2010

supply of Glivec
by Bee (Oct 15)

Hi All

Just to let you know we've collected Ted's Glivec from our local pharmacy - 3 month's supplied again with no problems thank goodness. It took a little longer at 8 days this

by TheCoopers (Oct 7)

Okay, I picked up our tablets this afternoon, our pharmacist went direct to Novartis. It's one better than earlier on in the year when she had them delivered by courier from Novartis (SE

by Bee (Oct 7)

I think we were the first to come across the "shortage" of Glivec last October. I did post at the time (23/10/09) - but thankfully the issue was resolved and we have been back to

by Steven Davies (Oct 6)

When this subject last raised its head and with my deliveries too, I made enquiries with Novartis.

In a round about way they intimated that the wholesaler of the drugs to the pharmacy was a
Category: Uncategorised

Replies: 4

Last updated: 15 October 2010
lisad123 on 6 October 2010

Category: Uncategorised

Replies: 4

Last updated: 6 October 2010

Scans??
by michael (Oct 6)

I had a ct scan in June this year, I had water in my lungs(side effect of dasatinib)and the consultant wanted to rule out any other causes pre-bone marrow transplant.So it might just be a

by lisad123 (Oct 6)

was just wondering if there was another reason for the scan they booked. Least I know its ot likely to be any worse news :)

by sandy craine (Oct 6)

The tests used to determine whether CML is progressing to accelerated or blast phases are usually done from peripheral blood samples and marrow aspirate/biopsy. Richard is right- CML is not a

by Richard42 (Oct 6)

Hi

I had an ultrasound scan to see if my spleen was enlarged but otherwise no. My understanding is that CML doesn't typically progress via secondary tumours - it progresses to different
Category: Uncategorised

Replies: 4

Last updated: 6 October 2010
philip42 on 6 October 2010

Category: Uncategorised

Replies: 1

Last updated: 6 October 2010

esa and dla
by michael (Oct 6)

Macmillan's cancer support specialists on 0808 808 00 00| will be able to help with benefit advice,

Good luck,Michael

by philip42 (Oct 6)

hi everyone just after a bit of help last may 09 i had a aorta dissection i spent 6 weeks intensive care when i came out of hospital made a claim for esa i had to have a medical in september
Category: Uncategorised

Replies: 1

Last updated: 6 October 2010
lisad123 on 6 October 2010

Category: Uncategorised

Replies: 1

Last updated: 6 October 2010

New trials
by sandy craine (Oct 6)

Yes, the link is on the home page... scroll down- it is not far from the top

Sandy

by lisad123 (Oct 6)

not sure if this has been posted before but very exciting news for those with resistance or T1531

http://www.euroinvestor.co.uk/news/story.aspx?id=11280546&bw=20100913005322
Category: Uncategorised

Replies: 1

Last updated: 6 October 2010
cmlblogger on 4 October 2010

Category: Uncategorised

Replies: 4

Last updated: 6 October 2010

A new baby fathered on Glivec
by sandy craine (Oct 6)

Dear Rob, lovely pictures- many congratulations and best wishes.... Sandy

by liz (Oct 5)

That's great news!

by sam (Oct 4)

thats great news !! so happy for you all

by chrissie (Oct 4)

Many, many congratulations on the arrival of Noah Samuel. What a special time for you all.

Best wishes

Chrissie
Category: Uncategorised

Replies: 4

Last updated: 6 October 2010
Steven Davies on 3 October 2010

Category: Uncategorised

Replies: 1

Last updated: 4 October 2010

NILOTiNIB Packaging
by Ali Loram (Oct 4)

Hi Steven, not having any difficulty as such but the box is very large, it takes a lot of space in the handbag. The most annoying thing is the bits of cylindrical cardboard that seem to find their

by Steven Davies (Oct 3)

Hi

I was just wondering if anyone on Nilotinib was having difficulty with the packaging of the tablets.

I would be interested to hear from anyone that is.

Many thnanks

Steven
Category: Uncategorised

Replies: 1

Last updated: 4 October 2010
lisad123 on 2 October 2010

Category: Uncategorised

Replies: 15

Last updated: 7 October 2010

aggrrr
by lisad123 (Oct 7)

Hammersmith recieved an urgent referal for Darren today, they called to say they are to discuss it and get back to us with appointment next week!

by lisad123 (Oct 6)

See thats where Darren is confusing, he had very high WBC count at dx of 414, but he has always had 4 % blast cells, never changed at all.

To say Im angry with his current treatment is an

by sandy craine (Oct 6)

Chronic phase - raised white cell counts without evidence (or less than 5%) of blast cells in bone marrow aspirate/biopsy-

Accelerated phase - high white cell and platelet counts

by lisad123 (Oct 6)

Thanks everyone, Darren seen his own specialist today who is sending off emergency referal this afternoon (should have done it last week!)

What makes you say accelerated phase?? I thought that
Category: Uncategorised

Replies: 15

Last updated: 7 October 2010
Anonymous (not verified) on 29 September 2010

Category: Uncategorised

Replies: 2

Last updated: 30 September 2010

Brestfeeding on Glivec...
by ADJL (Sep 30)

Hi Anna,

First off I wanted to say congratulations on becoming a mum with CML- must have been a really emotional and upseting time for you, especially when you're going through something

by Ali Loram (Sep 30)

Hi Anna & many congratulations on the birth of Matilda, I so love that name! My understanding is that Glivec should not be taken whilst pregnant (as you know) and also not whilst breast

by Anonymous (Sep 29)

It's a long story by now. I was diagnosed last year on 13th of Oct when I was 22 weeks pregnant with my 4th child.

While pregnant I had sessions of Leukapheresis 3 times a week for 5 weeks
Category: Uncategorised

Replies: 2

Last updated: 30 September 2010
Pennie on 26 September 2010

Category: Uncategorised

Replies: 1

Last updated: 27 September 2010

Kings CML Support Group
by sandy craine (Sep 27)

Dear Pennie, I would have loved to come to your meeting as Kings is easy for me to get to but I have to travel to Liverpool for a family gathering on Wednesday so will not be able to make it.

by Pennie (Sep 26)

There is a meeting of the Kings CML patients and Careres group on Wednesday 29th at 2.30pm

Venue the Cicely Saunders Institute at Kings College Hospital.

2 subjects being covered. Blood
Category: Uncategorised

Replies: 1

Last updated: 27 September 2010
yogiB on 26 September 2010

Category: Uncategorised

Replies: 3

Last updated: 27 September 2010

Surry Support Group?
by yogiB (Sep 27)

Can you email me Pennie and I can then keep you in touch that way!

Where do you live? Just so that we can find the most central point!

bethshay22@hotmail.com

Looking forward to being in

by Pennie (Sep 26)

It would be good to meet up with some 'locals' !! Let me know when you are next having a lunch.

ATB

Pennie.

by yogiB (Sep 26)

Sorry - forgot to sign off!

Beth in Staines

by yogiB (Sep 26)

Three of us met in Chertsey, Surry this lunchtime and found it really useful to chat about what concerns us most ... and be understood ... for over 3 hours!

Just wondering if there is anyone
Category: Uncategorised

Replies: 3

Last updated: 27 September 2010
irenekallison on 26 September 2010

Category: Uncategorised

Replies: 6

Last updated: 2 November 2010

Dasatinib (Sprycel) Side Effects
by Charlote (Nov 2)

I have the same problem dear and swelled my lips. Tell me what I do I have checked many specialist doctors some time well after some time this problem again started. Let me know the some opinion

by sam (Oct 5)

i am on dasatinb have been for 3 years was on glivec for 4 years prior to that

i sometimes have the big lip going on it feels like i have botox ! it happens in both lips, cant really pin

by irenekallison (Sep 27)

Thanks for the interesting comment and suggestions, I should have stated 4 instead of 3 years on Dasatinib - my doesn't time fly!

I have always tried to associate the 'Big Lip'

by karen (Sep 27)

Hi Irene

Weirdly enough I seem to get the same thing. It is normally my bottom lip and mostly on the right hand side. I had put it down to eating things that were causing a reaction but maybe
Category: Uncategorised

Replies: 6

Last updated: 2 November 2010
Don Adkins on 26 September 2010

Category: Uncategorised

Replies: 1

Last updated: 27 September 2010

Zileuton + Glivec Phase I trial
by sandy craine (Sep 27)

Dear Don.... thanks for the update. I look forward to more information after the trial reopens. I would like to stress Dr. Cerny's warning about patients doing this on their own. If we

by Don Adkins (Sep 26)

Hi to all,

I've received and update concerning the Zileuton (600mg) + Glivec (400mg) Phase

I trial taking place at UMass, Amherst, MA. After a phone call from
Category: Uncategorised

Replies: 1

Last updated: 27 September 2010
Basil from RSA on 22 September 2010

Category: Uncategorised

Replies: 13

Last updated: 25 September 2010

Report back from Basil in South Africa
by sandy craine (Sep 25)

Hi Basil.... wow that is really impressive. As I said to Barbara above- this is all really fascinating stuff! The way the immune system works. You forgot to mention the immune booster that you

by sandy craine (Sep 25)

Dear Barbara, many thanks for your update on the STIM study in France. I am really pleased to hear the increase in % of people who are sustaining their PCR-u status. I assume that as more and more

by Basil from RSA (Sep 24)

It's really great to meet another South African on this great forum.

I am sorry to hear that Gleevec did not not work for you. But there are a few alternatives now available and I am

by Barbs (Sep 23)

Hi all,

just to add that the French study was a national one with several centres participating, including Lyon; Dr Nicolini has told me that those who are going to relapse do so in the
Category: Uncategorised

Replies: 13

Last updated: 25 September 2010
ADJL on 22 September 2010

Category: Uncategorised

Replies: 1

Last updated: 22 September 2010

Anniversary
by sandy craine (Sep 22)

Many many congratulations on your third wedding anniversary and your first Cancerversary (I do so like that term).

Best wishes to you both,

Sandy

by ADJL (Sep 22)

Just wanted to post that today is my third wedding anniversary, and coincidentally my 1st 'Cancerversary', so very much a cause for celebration for me and my wife. It's been a helluva
Category: Uncategorised

Replies: 1

Last updated: 22 September 2010