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karen on 1 November 2010

Category: Uncategorised

Replies: 7

Last updated: 7 November 2010

BCR Results - Help!
by karen (Nov 7)

I just wanted to say thank you for your replies, I will try and get shared care as I have been thinking about it for a while and I will also try not to worry (thanks Zavie) although my ambition is

by zaviemiller (Nov 6)

Hi Karen,

It is frustrating when everyone around you are achieving CCR and you haven't yet.

Although it is nice to get to CCR (my definition of entering the Zero Club) it is not

by Janet (Nov 4)

Hello again Karen - yes, they have improved. Once it was clear that my PCR had stuck, my local consultant was proactive, and decided to escalate my dose to 6oomg imatinib [there was

by karen (Nov 4)

Hi Janet

Thanks for that - what are your results like now, have they improved?

Kx
Category: Uncategorised

Replies: 7

Last updated: 7 November 2010
Johannah on 29 October 2010

Category: Uncategorised

Replies: 1

Last updated: 7 November 2010

Side effects on Glivec
by ruddoug09 (Nov 7)

Hi Johannah,

No painful armpits for me but I'll keep an eye out for that, but after being on Imatinib for almost two weeks, I've got bad back, joint and muscle ache. I'm

by Johannah (Oct 29)

Hi, all

Would be interested to hear if anybody suffers with painful armpits since being on Glivec. I suffer with this almost constantly (have been on Gliven for just over a year).
Category: Uncategorised

Replies: 1

Last updated: 7 November 2010
cmlblogger on 28 October 2010

Category: Uncategorised

Replies: 3

Last updated: 29 October 2010

after nearly 4 years finally got to MMR
by sandy craine (Oct 29)

Dear Rob... many congratulations. Good news indeed.

Sandy

by Don Adkins (Oct 28)

Hi Rob,

Great news!

Don

by marsy (Oct 28)

Brilliant News Rob........ a little celebration tonight I presume !

by cmlblogger (Oct 28)

What with the news last month of our new arrival to the family, i also had the good news earlier this month that after hovering just above MMR for almost 2 years I finally hit MMR with a number of
Category: Uncategorised

Replies: 3

Last updated: 29 October 2010
marsy on 27 October 2010

Category: Uncategorised

Replies: 6

Last updated: 30 October 2010

Side Effects on Dasatinib
by marsy (Oct 30)

By the way the cream has worked a treat. I have only being applying it for 2 days and the red patches and dry skin are almost gone.

Keep in touch

Dave M

by jacqui from Colchester (Oct 28)

Have a great holiday keep being positive - believe you will get well, it works for me

Jacqui

by marsy (Oct 28)

Hi Jacqui,

Achy knees is probably too much dancing !!

Sounds like things are working really well for you and in some ways the

by jacqui from Colchester (Oct 28)

HI Dave

Thanks for that may well try it. My only other side effects are puffy eyes if I dont drink enough water and if I have a night out with too much to drink I may get achy
Category: Uncategorised

Replies: 6

Last updated: 30 October 2010
chrissbb on 15 February 2011

Category: Uncategorised

Replies: 1

Last updated: 17 February 2011

Support Group Meeting
by chrissbb (Feb 17)

The Speaker is probably going to be somebody from Pharmacy at St James. They can hopefully answer some interaction/TKI other drugs questions relating to side effects.

by chrissbb (Feb 15)

The Yorkshire Chronic Myeloid Leukaemia Support Group

The next CML support group is to be held on Monday 7th March 2011

Topic: Side effects of treatments for CML

Speaker: To
Category: Uncategorised

Replies: 1

Last updated: 17 February 2011
sandy craine on 25 October 2010

Category: Uncategorised

Replies: 6

Last updated: 3 November 2010

UK Seminar- Liverpool. 22nd, January 2011
by Bee (Nov 3)

Thanks Sandy

by sandy craine (Nov 3)

As promised from Barbara, here are some links to nearby hotels:

http://www.travelodge.co.uk/search_and_book/rooms_rates.php?hotel_id=248&from=list

by yogiB (Oct 29)

love bx

by sandy craine (Oct 28)

I asked about the possibility of delegates receiving a discount for overnight stay at the Plaza Hotel and Barbara McEvoy says that she had asked but they need to know numbers before they can give
Category: Uncategorised

Replies: 6

Last updated: 3 November 2010
Carol on 21 October 2010

Category: Uncategorised

Replies: 12

Last updated: 6 January 2011

PATIENT/CARER SUPPORT GROUP MEETING AT HAMMERSMITH ON SATURDAY 8th January 2011
by Pennie (Jan 6)

Hi Elizabeth and Carol So sorry I can't get to HH on Sat. I have got shingles and a chest infection. Feel like sxxt. The cocktail of drugs GP has put me on are bound to set

by Steven Davies (Jan 5)

Hi

Im looking forward to see and meeting those of you that are going on Saturday.

Steven D

by Carol (Jan 2)

Hi Lisa,

At the weekend parking is free at Hammersmith so you just park your car in the main car park you don't need to get a ticket to claim it back.

Just make sure you do park

by lisad123 (Jan 1)

How do we get free parking? do we need to buy a ticket and then claim back?

Darren not been well this week so hoping we can still make it, be nice to meet you all :)

Lisa
Category: Uncategorised

Replies: 12

Last updated: 6 January 2011
clive walpole on 21 October 2010

Category: Uncategorised

Replies: 2

Last updated: 22 October 2010

PCR
by clive walpole (Oct 22)

Thanks Sandy, I've been on Nilotinib since around December. I started on Gleevec then Dasatinib but developed a pleural effusion that was picked up around September followed by a 17 week chest

by sandy craine (Oct 22)

Dear Clive,

it sounds like you have cause to celebrate... many congratulations. How long have you been taking nilotinib?

I understand that the recently published nilotinib data shows that the

by clive walpole (Oct 21)

Hi everyone, just back from Hammersmith today really pleased with my pcr of 0.117 on Nilotinib. Its been a long and sometimes bumpy road since my dx in 2002. Wishing you all the best of health.
Category: Uncategorised

Replies: 2

Last updated: 22 October 2010
sandy craine on 21 October 2010

Category: Uncategorised

Replies: 9

Last updated: 28 October 2010

new articles on Home page
by Smahmood (Oct 28)

Hi Sandy

I am pleased you have reached yet another milestone. Thanks for explaining in detail about the SCT. I would like to know what are the benefits of having a full transplant than a mini

by yogiB (Oct 27)

That's brilliant Sandy - I am SO delighted for you!

Love beth

by skiinglaketahoe (Oct 27)

Hi Alyson

I am glad to hear how well you are doing; keep it up.

I, too, had to have DLI 6 months post transplant as I wasn't 100% donor cells, even though I was PCRU. I am not sure what my

by sandy craine (Oct 27)

Dear Alyson, good to hear you are doing well.

I was part of an ongoing study at Hammersmith (in partnership with Birmingham Queen Elizabeth) which is now at several other UK centres, that used
Category: Uncategorised

Replies: 9

Last updated: 28 October 2010
Ali Loram on 20 October 2010

Category: Uncategorised

Replies: 2

Last updated: 21 October 2010

Todays Daily Telegraph. "simple drug treatment "cures" CML
by sandy craine (Oct 21)

Yes I saw the article in the Telegraph and there was also a similar one in the Independent. I agree that all these are misleading - especially the headline below which intimates that CML is no

by Swede (Oct 21)

The abstract of this study can be found here:

http://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(10)70233-3/abstract

by Ali Loram (Oct 20)

Have a look at this! In news Bulletin there is an article about this simple cure! Prof Francoise-Xavier Mahon from France. this type of reporting certainly is very misleading. Such a small study
Category: Uncategorised

Replies: 2

Last updated: 21 October 2010
ian hinley on 20 October 2010

Category: Uncategorised

Replies: 5

Last updated: 9 November 2010

How long does it take to process gleevec from the stomach?
by SwanValleySue (Nov 9)

Hi Ian

Eating for glivec is certainly a management process. After awhile you get to learn what you can have and not have.

My suggestions:

Do not have your glivec with any diary foods

by vickiep (Nov 8)

Hi Ian,

You say you're having half a banana as well as toast for your breakfast...when I was on Glivec I found I needed to eat quite a substantial amount of food to avoid the nausea and

by Barbs (Oct 20)

My dt once told me that if I was sick with 30 mins of taking my glivec then I could take another pill without danger, because it wouldn't have started to be digested yet,

Barbara

by ian hinley (Oct 20)

Sandy,

Once again you are most helpful and informative. It would be great if you managed to find the answer to this. I have started eating half a banana as well as having
Category: Uncategorised

Replies: 5

Last updated: 9 November 2010
Don Adkins on 20 October 2010

Category: Uncategorised

Replies: 2

Last updated: 20 October 2010

A CML Warrior has passed away
by sandy craine (Oct 20)

Hi Don and Barbara,

thanks to both of you for posting this news about David. I too had been fortunate to meet with him at one of the UK Seminars some years back (Manchester) ... this was

by Don Adkins (Oct 20)

I'm sorry to start another Thread, I didn't see Barbs post. David and I had been exchanging emails for some time. I was fortunate enough to meet him a couple of months ago. We

by Don Adkins (Oct 20)

Hi all,

I'm not sure if David ever posted on this site but I wanted all of you to know that he was a friend of mine and a true CML warrior. Even when things were bad, David was always
Category: Uncategorised

Replies: 2

Last updated: 20 October 2010
chris whalley on 19 October 2010

Category: Uncategorised

Replies: 14

Last updated: 21 October 2010

BMT
by Smahmood (Oct 21)

Hi Michael

Thanks for the information. I see Dr Ho too. I agree with you completely if Kings CML team advises someone about the transplant I think they should follow their advice. Did you have a

by chris whalley (Oct 21)

Thank you for your information Susan, another cracking BMT result is great to hear.

by skiinglaketahoe (Oct 21)

Hi

Just to say that there are a good few post transplant patients around!

I am 3 years post mini SCT, well 3 years next week and I have been PCRU since the transplant. I did have a

by michael (Oct 21)

Thats a very fair comment Sandy,

I agree,The presence of Trisomy 8 on its own ,is not a reason to have a stem cell transplant.
Category: Uncategorised

Replies: 14

Last updated: 21 October 2010
Barbs on 19 October 2010

Category: Uncategorised

Replies: 1

Last updated: 19 October 2010

David Robert Cox
by Barbs (Oct 19)

You can reach the blog via "Blogs" to the left of this page.

by Barbs (Oct 19)

I'm sure that some of you will remember david, a US marine who came to the CML Seminar in manchester.

I've just found out that he passed away last week.

He'd had a BMT in 2007 but had
Category: Uncategorised

Replies: 1

Last updated: 19 October 2010
Andy Parkin on 18 October 2010

Category: Uncategorised

Replies: 1

Last updated: 20 October 2010

Leukemia Journal - online edition 2/9/10- Article
by sandy craine (Oct 20)

Dear Andy,

thanks for posting this abstract. It is very interesting that although extremely sensitive testing by this team of researchers (including T.Hughes/J.Melo-Adelaide) can still detect

by Andy Parkin (Oct 18)

Fellow sufferers of CML may well find the attached article of interest.
Patients with chronic myeloid leukemia who maintain a complete molecular response after stopping imatinib treatment have
Category: Uncategorised

Replies: 1

Last updated: 20 October 2010
Andy Parkin on 18 October 2010

Category: Uncategorised

Replies: 1

Last updated: 20 October 2010

Feedback from Kings College Hospital CML Patients group meeting
by sandy craine (Oct 20)

Dear Andy and Pennie,

thank you both so much for taking time to share the notes of your meeting. they are very helpful in the eternal quest to understand how pcr testing is done and why it

by Andy Parkin (Oct 18)

Please see below for some notes covering two topics covered at our last patients' group. Pennie and myself thought the notes might be of wider interest to the Forum

Regards

Andy
Meeting
Category: Uncategorised

Replies: 1

Last updated: 20 October 2010
ruddoug09 on 17 October 2010

Category: Uncategorised

Replies: 5

Last updated: 19 October 2010

Newly Diagnosed
by zaviemiller (Oct 19)

A BMT is a very risky procedure. Please inform yourself as to the mortality rate of the institution you are goining to have it. One stat that I heard is that 50% of BMTs are dead within 5

by ruddoug09 (Oct 18)

Thanks people, after speaking with the specialist today I'm in complete agreement with everything that has been written above. I've got another week (which will be my second) on

by Simon Clayson (Oct 18)

I can fully understand your thoughts and concerns. My wife was diagnosed over 6 years ago when in her early fifties and otherwise very fit. We were concerned that by trying Imatinib

by michael (Oct 17)

Hi and welcome,A bone marrow transplant offers no guarantee of a cure,The odds on your sister being a match is one in four.

I would start Imatinib,get your Sister tested and then get
Category: Uncategorised

Replies: 5

Last updated: 19 October 2010
Steven Davies on 13 October 2010

Category: Uncategorised

Replies: 4

Last updated: 20 October 2010

Seminar update
by Barbs (Oct 20)

Hi Angela,

I was thinking about you only yesterday!

How are you doing? Are you still having your dizzy spells?

Are you on facebook?

Barbara XXXX

by angela (Oct 20)

Hi Barbara

Hope to see you next year in Liverpool. Hope you are keeping well.

Angela

by angela (Oct 20)

Hi Steven

Thanks very much for letting us know. I haven't been able to find any information about seminar on this site which I've been searching for as I like to book my hotel /

by Barbs (Oct 14)

What good news if it's in Liverpoool - Easy Jet do direct flights from Lyon!
Category: Uncategorised

Replies: 4

Last updated: 20 October 2010
michelle on 12 October 2010

Category: Uncategorised

Replies: 2

Last updated: 13 October 2010

changing from Imatinib 400mg to Dasatinib due to intolerence/side effects
by Swede (Oct 13)

Hi Michelle

I switched to dasatanib from imatanib because of intolerance and have found I have far fewer side effects. Still some such as abdominal cramps/pain/bloating, muscle/bone pain

by lisad123 (Oct 12)

darren, my husband switched a few weeks back due to developing resistance after 18months of treatment. He always felt tired and sick on the gleevec but since switching to Dasatinib he has been so

by michelle (Oct 12)

Hi, I am due to see my consultant again in a couple of weeks as at my last clinic appointment, switching to Dasatinib from Imatinib 400mg was discussed due to some of the side effects that I have
Category: Uncategorised

Replies: 2

Last updated: 13 October 2010
carlos on 10 October 2010

Category: Uncategorised

Replies: 6

Last updated: 17 October 2010

Yellow Fever
by vickiep (Oct 17)

I too can confirm that provided the TKI is keeping white cell count to within normal levels, then a CML sufferer is not immuno-compromised. I am treated at Eastbourne DGH who take their advice

by Richard42 (Oct 11)

If the Hammersmith advised me not to have it, then I certainly wouldn't. I think though it may vary from patient to patient and I would certainly seek my own consultant's

by Steven Davies (Oct 10)

Hi I have always been told not to have a live vaccine by the Hammersmith.

I belive yellow fever IS a live vaccine and you should double check before having it..

I have decided to avoid any

by Richard42 (Oct 10)

I recently had to have a series of vaccinations - all fine, though none were live. Before doing this however, I checked with several sources all of whom said that so long as I was not immuno
Category: Uncategorised

Replies: 6

Last updated: 17 October 2010