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yogiB on 21 September 2010

Category: Uncategorised

Replies: 2

Last updated: 22 September 2010

Interesting bit of news - re a cure!
by ADJL (Sep 22)

It's so heartening to hear of people like this who are working so hard for CML sufferers all over the world. What an amazing thing to be so close to effecting a cure- and imagine what that

by jackieb38 (Sep 21)

I read this too, would be fantastic wouldn't it! I noticed the article was dated 2009 so does that mean that they could have already started trails with it and if so how do you go about

by yogiB (Sep 21)

http://www.bangordailynews.com/detail/108012.html

Wouldn't it be wonderful!

Beth
Category: Uncategorised

Replies: 2

Last updated: 22 September 2010
lisad123 on 17 September 2010

Category: Uncategorised

Replies: 1

Last updated: 20 September 2010

New on dsnabinib and illness
by sandy craine (Sep 20)

If Darren's absolute Neutrophil count (neutrophils are one kind of white cell that deals with bacterial infections - so you should ask for the level) is normal then he should be OK and not at

by lisad123 (Sep 17)

Darren started his new drugs after dfeveloping reisstence to Imatinab after 18months. Do you we have to start watching out for colds and stuff again like when he first started Imatinab. We forgot
Category: Uncategorised

Replies: 1

Last updated: 20 September 2010
ian hinley on 13 September 2010

Category: Uncategorised

Replies: 1

Last updated: 21 September 2010

ARIAD Ponatinib Phase II Trial
by sandy craine (Sep 21)

Ian, thanks for flagging this up. I have put the link to Ariad's website which contains all the information on the trials etc. on the home page.

Best wishes,

Sandy

by ian hinley (Sep 13)

ARIAD Announces Initiation of Ponatinib (AP24534) Pivotal Trial in Drug-Resistant or Intolerant Chronic Myeloid Leukemia
~ Registration trial for approval of ponatinib in CML
Category: Uncategorised

Replies: 1

Last updated: 21 September 2010
Vangogh on 13 September 2010

Category: Uncategorised

Replies: 7

Last updated: 23 September 2010

BCR/ABL Results
by Vangogh (Sep 23)

Hi Everbody

Thanks for your support,It has made waiting until December for the next test easier.

Tony

by Basil from RSA (Sep 22)

Sorry, the 'net fell down and I did not realize that my post had been logged.

by Basil from RSA (Sep 22)

Hi Tony, you have been given very good advice by Sandy. A trend is the important guide to follow, but realize that the QRT-PCR test is not 100% accurate. It's an "amplified" result.

by sandy craine (Sep 21)

Hi Tony, your are absolutely right- this is not a big increase. when you look at your 2 pcr results they really the same i.e no increase in log- no loss of a zero. not even half a log

0.029% to
Category: Uncategorised

Replies: 7

Last updated: 23 September 2010
tomannie on 12 September 2010

Category: Uncategorised

Replies: 1

Last updated: 22 September 2010

old friend looking for advice
by sandy craine (Sep 22)

Hi Tom

there are many patients who are doing very well on nilotinib. It does mean some re-adjustment to the administration regime you have probably become used to with imantinib- but I am sure

by tomannie (Sep 12)

hello Sandy and Elizabeth,

I dont know if youll remember me i was diagnosed in98, my name is Tom Wilson, i had my treatment in glasgow and was the first person in scotland to trial sti (
Category: Uncategorised

Replies: 1

Last updated: 22 September 2010
Johannah on 12 September 2010

Category: Uncategorised

Replies: 1

Last updated: 14 September 2010

Sore throat
by Ali Loram (Sep 14)

Hi Johannah, what a good result you have, great news for your future! I am sorry you suffer with your throat, I think that the meds can cause different problems for all of us. I had a lot of side

by Johannah (Sep 12)

Hi, all

I haven't posted for sometime, am now 14 months since diagnosis and have been bcr/abl zero for the last 6 months, so, extremely happy about that. I am on Imatinib
Category: Uncategorised

Replies: 1

Last updated: 14 September 2010
yogiB on 16 October 2010

Category: Uncategorised

Replies: 3

Last updated: 18 October 2010

Green tea compounds found to help halt leukemia
by niverizhaL (Oct 18)

I am not really sure about the benefits of green tea to leukemia but there are some researchers reporting positive results in early leukemia clinical trials using the chemical epigallocatechin

by yogiB (Oct 17)

Thanks Ian!

by ian hinley (Oct 17)

http://www.naturalnews.com/029987_green_tea_leukemia.html

by yogiB (Oct 16)

www.naturalnews.com
Category: Uncategorised

Replies: 3

Last updated: 18 October 2010
Carol on 11 September 2010

Category: Uncategorised

Replies: 3

Last updated: 18 September 2010

PATIENT/CARER SUPPORT GROUP MEETING AT HAMMERSMITH ON SATURDAY 18TH SEPTEMBER
by yogiB (Sep 18)

It was really great to meet you all this morning - Elizabeth, Michelle, Lynn, Bill and those others whom I didn't get to know by name. I found the session really useful, really

by yogiB (Sep 13)

I am hoping to be there - health willing!

Beth from Surrey

by lynnsch (Sep 12)

Hi Carol, looking forward to seeing you all next week and hearing from Dr Dragana Milojkovic.

by Carol (Sep 11)

Patient Support Group Meeting at Hammersmith Hospital

EVERYONE WELCOME

LEUKAEMIA PATIENTS SUPPORT GROUP

CATHERINE LEWIS CENTRE RECEPTION

HAMMERSMITH HOSPITAL

Du
Category: Uncategorised

Replies: 3

Last updated: 18 September 2010
Pennie on 10 September 2010

Category: Uncategorised

Replies: 6

Last updated: 28 September 2010

9 years this weekend !!
by great 2b alive (Sep 28)

WOW! I was DX on the 5th of September, 2001, I thank God gave me something to think about when that happened. I quickly got out of my PJ's and decided I was still alive no

by Smahmood (Sep 18)

Hi Pennie,

Congratulations on your 9th year of fighting with the disease, well done. I was diagnosed in May this year. I am Glivec 400 daily. I would like to know if CML has effected you in any

by sandy craine (Sep 10)

Dear Pennie, what a journey its been- well worth you and Bill celebrating with a drink- or even 2! Great to hear your fighting spirit has not been diminished over these last years. We have

by cmlblogger (Sep 10)

So close to 9/11/01 as well must have been a tough time

i also agree that getting the CML dx has been one of he worst and best things to have happenned to me.

rob
Category: Uncategorised

Replies: 6

Last updated: 28 September 2010
jacqui from Col... on 9 September 2010

Category: Uncategorised

Replies: 4

Last updated: 10 September 2010

9/9/09 and now a year on
by yogiB (Sep 10)

Jacqui

Thats so amazing. I was dx two months later and have just had my latest PCR which shows I rise to 90% - almost where I started 10 months ago. Have had very severe aneamia with 6pts blood

by sandy craine (Sep 10)

Dear Adam.... be proud - please don't be too reticent about self-congratulatory displays. It helps others have hope in their own futures if we share our stories here.

Please 'shout out

by sandy craine (Sep 10)

Dear Jacqui ... you really do need to celebrate such a spectacular molecular response - to reach 0.010% bcr/abl in less than 12 months is every reason to be positive about the future.

Very best

by ADJL (Sep 10)

Hi Jacqui,

Just wanted to say congratulations and that these milestones are essential in taking stock of the past and looking forward to the future.

My 1 year anniversary
Category: Uncategorised

Replies: 4

Last updated: 10 September 2010
lisad123 on 8 September 2010

Category: Uncategorised

Replies: 2

Last updated: 10 September 2010

Chromosome 8 trisomy in bonemarrow results. Also now changing to spirit
by sandy craine (Sep 10)

Good luck to Darren for a good outcome with the Spirit trial. Do ask the trial doctors about the meaning of trisomy 8- however it does not seem to affect a good response to the TKI's- quite a

by Richard42 (Sep 9)

I understand this to mean that Darren has an extra copy of chromosome 8 in his cells (three copies rather than the usual two), something that can happen in CML. Best to discuss what it means other

by lisad123 (Sep 8)

Darrens results from today werent good and bone marrow showed increase in cancer cell, as 12 in every 50. Also showed Chromosome 8 trisomy, which we dont really understand. Any help?

Darren
Category: Uncategorised

Replies: 2

Last updated: 10 September 2010
Anna on 1 September 2010

Category: Uncategorised

Replies: 8

Last updated: 16 December 2010

CML and pregnancy
by spinning jeanie (Dec 16)

great news as i'm 24. and dont feel anywhere near that stage, but hate the thought of it not being a possibility. very encouraging news. congratulations and i hope it all goes well.

by Anna (Nov 24)

Hi Patrice

Sorry, just noticed your questions! I am 36 years old, was dx when I was 31. I did have several cycles of IVF but was not successful, this pregnancy was all natural, which was a

by patrice (Nov 8)

Hi Anna,

That's great news and makes me hopeful too as I am 28 and was

Dx April 2009 and I was 8 weeks pregnant lost the baby but since

Then have been wondering when it will happen

by danny900 (Sep 13)

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Category: Uncategorised

Replies: 8

Last updated: 16 December 2010
SwanValleySue on 31 August 2010

Category: Uncategorised

Replies: 1

Last updated: 2 September 2010

Meaning of result - for Bone Marrow Biopsey
by zaviemiller (Sep 2)

When they don't find evidence of CML via a bone marrow biopsy. Also known as CCR (Complete Cytogrnic Response)

Zavie

by SwanValleySue (Aug 31)

Hi Everyone

Does anyone know the meaning of these words in relation to below

I was just wondering what the words morphological remission mean on the results sheet for a bone marrow
Category: Uncategorised

Replies: 1

Last updated: 2 September 2010
cosmiccircus on 27 August 2010

Category: Uncategorised

Replies: 3

Last updated: 1 September 2010

CML & HIV
by sandy craine (Sep 1)

Dear Ravi,

welcome to this forum and thanks for introducing yourself and telling your story. I cannot imagine what it must be like to suffer from two life-threatening diseases but you show great

by Andy Parkin (Aug 31)

Ravi, Certainly in my case the fatigue associated with Glivec has eased as time has gone on.

I was diagnosed in February 2007, had always been a keen runner and found that trying to run in the

by cmlblogger (Aug 27)

Hi Ravi - I try to get to the gym at work 2-3 times a week. I wasn't a big gym go-er before the CML for some time but always kept reasonably fit doing other stuff.

I have found that I

by cosmiccircus (Aug 27)

I was dx of HIV in 2002 and in Dec 2008 of CML. Over the years i was very healthy and was coping very well until i got CML. I was put on Hydroxyurea and Allopurinol for few months before starting on
Category: Uncategorised

Replies: 3

Last updated: 1 September 2010
michelle on 7 September 2010

Category: Uncategorised

Replies: 2

Last updated: 9 September 2010

Reflexology and massage..Chinese medicine?
by michelle (Sep 9)

Thanks for your advice.. I am glad I didn't take the herbs.. you are right about the massage it has taken me two days to recover!

All the best,

Michelle

by Ali Loram (Sep 7)

Hi Michelle, I would personally be very wary of using Chinese clinics and herbal remedys, especially with cml & the drugs we have to take. Some of the Chinese clinics (and I am not saying

by michelle (Sep 7)

Hi all, I have not posted for a while but always find the support of the forum so helpful.

What I would like your advice on is weather it is ok to have reflexology and massage while taking Live
Category: Uncategorised

Replies: 2

Last updated: 9 September 2010
sandy craine on 26 August 2010

Category: Uncategorised

Replies: 1

Last updated: 26 August 2010

For Patrik... from thread further down page
by Patrik Hjortberg (Aug 26)

Hi Sandy

Thank you very much for the information you give. I will certainly ask the doctor if dasatinib has been considered. A short term drop into chronic stage is all that is necessary for

by sandy craine (Aug 26)

Hello Patrik,

I am sorry to hear of the problems that your fiance is having. It is so difficult to advise you but she is in an expert centre and that is something to be glad about.
Category: Uncategorised

Replies: 1

Last updated: 26 August 2010
Ali Loram on 25 August 2010

Category: Uncategorised

Replies: 2

Last updated: 26 August 2010

Night/day sweats
by karen (Aug 26)

Hi Ali

Oh yes!!! Have mentioned it to my consultant who did think the drugs may have pushed early menopause but couldn't check as i was on the pill. Mind you if Bill is getting them it may

by Sarah R (Aug 25)

Dear Ali

I have just spoken to my son Bill (18) and he reports that he gets these sweats randomly whatever the weather conditions. I've noticed that he sometimes seems very sweaty.

by Ali Loram (Aug 25)

Just wondering if anyone has day sweats? I am ok at night & never had them before I was dx, but am finding them quite bad at the moment. I know Im a female of a certain age but it not hot
Category: Uncategorised

Replies: 2

Last updated: 26 August 2010
fselman on 24 August 2010

Category: Uncategorised

Replies: 1

Last updated: 24 August 2010

Glivec side effects II: kidney stones?
by Richard42 (Aug 24)

Hi Fernando

I haven't experienced stones on Glivec but I had one 20 years ago - long before CML appeared. It was very small, and I did not need surgery to remove it! Although I have to

by fselman (Aug 24)

Last week I had pain in my right side, specially the back. Although the pain was not terrible I did feel terribly bad retching etc. Went to the clinic where after a CAT scan I was diagnosed with
Category: Uncategorised

Replies: 1

Last updated: 24 August 2010
Bee on 22 August 2010

Category: Uncategorised

Replies: 3

Last updated: 23 August 2010

Living abroad
by Smahmood (Aug 23)

Hi Bee,

Thanks for the information. I hope your dream of living abroad comes true in the near future. I wish you both best of luck.

Cheers

Shaz

by Bee (Aug 23)

Hi Shaz

Ted was diagnosed in June 2001and had to do a year of Interferon before he could be prescribed Glivec. He started on 400mg but went on to 800mg, so has been on 800 mg since the end of

by Smahmood (Aug 22)

Hello Bee

I read your messege on here today. I am 28 years old and i was diagnosed with CML in May this year. I am on 400mg Glivec.If you dont mind i would like to know about few things which

by Bee (Aug 22)

Hi All

Don't need to post very often nowadays but read occasionally - all is well with Ted, still on 800 mg Glivec and the next anniversary will be 10 years.......PCR is still going down,
Category: Uncategorised

Replies: 3

Last updated: 23 August 2010
alison28 on 21 August 2010

Category: Uncategorised

Replies: 5

Last updated: 29 August 2010

travel insurance
by Janet (Aug 29)

Alison, I went to the Maldives last year on the way back from Sri Lanka. GO!!! Vaccinations - just Hep A, typhoid [ I think] and Tetanus. No probs at all. Advice from docs was to avoid live

by Vangogh (Aug 24)

Hi

My wife and I have been to Mauritius for the past two years, no problem at all. We did not get bitten once, although our jabs are still up to date from pre dx (July 2008). We were

by chrissie (Aug 23)

Hi

I was planning to go to Ethiopia for a short break and my consultant has written to my GP advising him that I can have Hep A, ,diptheria,tetanus,typhoid and polio vaccines. My yellow fever

by KAleigh (Aug 23)

Maldives is one of the great place that I long to visit for. I am currently facing right now problem in getting my visa that's why my application is still hanged. I am planning to visit
Category: Uncategorised

Replies: 5

Last updated: 29 August 2010