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sue on 1 October 2009

Category: Uncategorised

Replies: 6

Last updated: 6 October 2009

becoming a member of this site/message for sandy craine
by sandy craine (Oct 6)

I am sorry some of you have experienced a delay before activation of new accounts.

Your must understand that our site is targeted by a huge amount of spam and in order that it does not appear

by zaviemiller (Oct 5)

Hi Sue,
Could you send me your email address. The last two that I have for you failed.
Thanks,
Zavie Miller

e-mail: zmiller@sympatico.ca

by zaviemiller (Oct 5)

Hi Sue,
Could you send me your email address. The last two that I have for you failed.
Thanks,
Zavie Miller

e-mail: zmiller@sympatico.ca

by chrissie (Oct 5)

I had the same problem in that I had to wait over a week before my user name and password were activated. In the meantime, I was able to talk to people on the US site easily. I emailed the
Category: Uncategorised

Replies: 6

Last updated: 6 October 2009
sandy craine on 29 September 2009

Category: Uncategorised

Replies: 1

Last updated: 30 September 2009

Urgent request- Appraisal of dasatinib and nilotinib by Peninsula Health Technology Commissioning Group
by sandy craine (Sep 30)

I would like to thank Ali Lorem who answered my request at very short notice and sent me an outline of her experiences since diagnosis with TKI therapies.

I spent some hours late last night

by sandy craine (Sep 29)

If at all possible in the short time we have to give an view of the experiences of imatinib resistant/intolerant CML patients who are in need of the 2nd gen drugs I would be grateful for your urgent
Category: Uncategorised

Replies: 1

Last updated: 30 September 2009
sandy craine on 28 September 2009

Category: Uncategorised

Replies: 1

Last updated: 13 October 2009

Easy Fundraising for CML Support Group
by Alastair C (Oct 13)

All, I've signed up to this and its very easy. Recently spent £37.84 at Amazon, and 86pence goes to the fund. All you need to do is to log in to your chosen website via the Easyfundraising website

by sandy craine (Sep 28)

We're getting ready to close Quarter 3 2009, at the start of October, and the good news is you're very close to the £15 threshold required to issue an easyfundraising cheque for Chronic Myeloid
Category: Uncategorised

Replies: 1

Last updated: 13 October 2009
jacqui from Col... on 28 September 2009

Category: Uncategorised

Replies: 17

Last updated: 12 October 2009

Newly diagnosed
by kestrel (Oct 12)

We applied for DLA for our son who has CML and asked for advice from the hospital social worker. She was able to tell us how best to complete the form and we were succesful in getting DLA. There

by chrissie (Oct 5)

Thanks for your reply. I have now been on Imatinib for 10 days and feel no side effects - except I'm always hungry. Have my next appt at the RD and E hospital on Friday. What should I be asking

by karashan (Oct 3)

Hii am new to this site my husband is a CML sufferer to as a carer i find it very difficult to understand my husband was diagnosed almost a year ago and he has never been right since hes tired all

by michael (Sep 30)

Hi thats interesting,I shall have look out for information on spiritII trail,Glivec failed for me and I am on dasatinib and making good progress .The world of CML is fast moving,best of luck jacqui
Category: Uncategorised

Replies: 17

Last updated: 12 October 2009
karen on 28 September 2009

Category: Uncategorised

Replies: 3

Last updated: 28 September 2009

Postal Service
by Bee (Sep 28)

Oh that's awful. CML is bad enough without having to wait and worry about samples arriving in time. Luckily Ted's are still sent down to Hammersmith by courier, but in the early days, samples would

by karen (Sep 28)

Maybe we should suggest we have our appointments in London and they can pay the travel!

K

by pat preston (Sep 28)

Yes Karen, I am about to have to go back for the third time to have my pcr taken. This month I had a pcr taken and Nottingham did not attach the paperwork in time - for which they apologised. The

by karen (Sep 28)

Has anybody been having problems with blood tests going 'off' in the post? Twice now my PCR tests has gone off in the post due to the fact that my hospital send all blood tests by first class Royal
Category: Uncategorised

Replies: 3

Last updated: 28 September 2009
Diane Kargas on 28 September 2009

Category: Uncategorised

Replies: 7

Last updated: 6 October 2009

New member
by Diane Kargas (Oct 6)

Hi Sandy

I found out today at the hospital that Dr Tim Hughes is the lead Doctor in the trial I have agreed to be on so it looks like I should be in good hands.
Warm regards to you Di

by Diane Kargas (Oct 1)

Hi Sandy thank you for this information I will look into finding out more about how I can tap in to more information. Sadly it is great to know you are all out there are willing to support us.

by Diane Kargas (Oct 1)

Hi sue thanks for this great inforamtion. I have joined the CML Alliance this week so I will look into this. On the trial I have to keep a daily diary so that is under control I guess it is just

by Diane Kargas (Oct 1)

Hi Jeanette
Thanks for your good ideas, i have been quite well but quizzy, some vomiting but it seems to be associated with a milk protien drink we have in the morning. I am trying it again today
Category: Uncategorised

Replies: 7

Last updated: 6 October 2009
bobosbo on 25 September 2009

Category: Uncategorised

Replies: 5

Last updated: 1 October 2009

To Dasatinib & beyond........
by jacqui from Colchester (Oct 1)

Have been taking it for three weeks and apart from the first two days I gave been fine although my eyes can be puffy and I can get a little tired - I will check for grey hair later

by michael (Oct 1)

I was like that, but on day 8 I was admited to hospital with abdominal pain,headache.since then have low blood platelet count,low white blood cells count,anemia.

other members have reported

by bobosbo (Oct 1)

Fellow Dasatinib users,

I have now been taking Dasatinib for a week, & so far have found no noticeable side effects, is this common, or am I a bit premature with this, allthough when I

by karen (Sep 28)

Hi Bob
I would agree - the side effects are a lot less although I do get very tired on it. I have to say though I am quite excited to read that someone else has a pimply skin rash - my consultant
Category: Uncategorised

Replies: 5

Last updated: 1 October 2009
Ali Loram on 25 September 2009

Category: Uncategorised

Replies: 1

Last updated: 25 September 2009

swine flu
by Janet (Sep 25)

Hi Ali
Prof Apperley's advice is to have it - I asked her when I went to see her in early September. She also said to have the flu jab. Her opinion is good enough for me!
Janet

by Ali Loram (Sep 25)

Hi, I am wondering what us CML's are thinking about the swine flu vaccine? My GP is now taking bookings for the innoculations 1st week of October & I know they will be giving me a call to book
Category: Uncategorised

Replies: 1

Last updated: 25 September 2009
sue on 22 September 2009

Category: Uncategorised

Replies: 2

Last updated: 23 September 2009

Familiar Faces
by sue (Sep 23)

susan dickerson

Hi Ali thanks for reply, I come from Queensbury Bradford West Yorkshire, and have had no face to face support during the last nine years of having cml. However I am now a

by Ali Loram (Sep 22)

Hi Sue, that a good Idea! I, for one, would be quite happy to add that on to my badge. Anyone who isnt happy to do this can easily just opt out on the day.
There is a member from Bristol who I think

by sue (Sep 22)

I wondered if it would be possible for anyone interested to add the area where they live onto the badge they are given at registration at the CML SEMINAR this year. Maybe this could help when
Category: Uncategorised

Replies: 2

Last updated: 23 September 2009
Diana Green on 21 September 2009

Category: Uncategorised

Replies: 2

Last updated: 25 September 2009

Stress and PCR levels
by zaviemiller (Sep 25)

Hi Diane,
Could you send me your email address?
Thanks,
Zavie

e-mail: zmiller@sympatico.ca

by Janet (Sep 21)

Hello Diana
First - congratulations on reaching PCRU!!! You have been heading there for a long time, but how very nice to have so many zeros. You never know, sigh, maybe one day I will join you

by Diana Green (Sep 21)

I read with interest Alastair's recent posting regarding his PCRU status and the fact that his good results have been achieved during a very stressful period at work.
This afternoon I heard that I
Category: Uncategorised

Replies: 2

Last updated: 25 September 2009
chris murphy on 21 September 2009

Category: Uncategorised

Replies: 5

Last updated: 23 September 2009

floaters/blurring in eyes
by PhilB (Sep 23)

Hi all,

I haven't posted on here before, but have been a regular reader since diagnosis in Feb this year. Just to add to the confusion, in my case the floaters and blurred vision were caused

by Bee (Sep 22)

Hi Vangogh
Yes, Glivec is a drug with loads of different side effects - blurry vision being one. Ask Ted - I think he's had EVERY side effect and more!

I'm not familiar with Dasatinib, but

by Vangogh (Sep 22)

Hi

I have been on Glivec for 15 months and I have experienced blurred vision and vision disturbance. It clears fairly quickly and as I am 66 I have put it down to anno domini, although I

by chris murphy (Sep 21)

Hi Bee
Thank you for your reply, yes he must see someone about this tomorrow if possible.

I will phone and arrange an appt with doctor.
Many many thanks again.
Chris
Category: Uncategorised

Replies: 5

Last updated: 23 September 2009
tedbdd on 20 September 2009

Category: Uncategorised

Replies: 3

Last updated: 23 September 2009

Gleevec Rash and Pins and Needles sensations
by skiinglaketahoe (Sep 23)

Hi Tom
I had very bad pins and needles whilst I was on glivec. It started approx. 4 months after I started the glivec and was initially only in my hands and feet. It then spread all over my body and

by kestrel (Sep 23)

Hi Tom

My son had pins and needles feelings in his feet, legs and arms whilst on Glivec.

kestrel

by cmlblogger (Sep 21)

Hi Tom - I get pins and needles in my arms mainly while running, I was told to drink a glass of milk before exercise and this has helped somewhat.
I also sometimes get them at night
I too get excema

by tedbdd (Sep 20)

Group...has anyone out there had experience with Gleevec related rash and Prickly feelings? I was diagnosed with CML in 12/08 and started on Tasigna in an experimental protocol with MD Anderson
Category: Uncategorised

Replies: 3

Last updated: 23 September 2009
Cathy Thomas on 20 September 2009

Category: Uncategorised

Replies: 8

Last updated: 29 September 2009

Another new member
by Pesty (Sep 29)

Hey, Coffee sounds great and Bromley is fine. Just let me know when and where. My email is pesty@hotmail.co.uk if you want to contact direct.
I am def considering going in November but was a bit

by Cathy Thomas (Sep 29)

Hi and thanks for your greetings Jeanette and Tony, and welcome to the club Pesty.
It's funny but I've gone from newby to old hat in no time on this forum. I feel like a vet compared with you

by Pesty (Sep 28)

Hey all.
Cathy, I love your post. I couldnt have put it better myself. My experience was exactly the same, my spleen has been the subject of many discussions at Mayday hospital in Croydon and my

by Vangogh (Sep 23)

Hi Cathy

Glad to hear that you are doing well. I too went off wine, but after some extensive field research at our favourite restuarant in Beckenham I now drink Rose wine, which is better. My
Category: Uncategorised

Replies: 8

Last updated: 29 September 2009
sandy craine on 18 September 2009

Category: Uncategorised

Replies: 1

Last updated: 20 September 2009

Lond term Survivorship - roundtable discussion 25/09/09
by Bee (Sep 20)

Ted might be interested (diagnosed June 2001 if that is considered long term?), but we don't live in London. Can you e-mail us please Sandy?

Bee

by sandy craine (Sep 18)

Due to cancellations there are a few places left on the upcoming roundtable discussion on 'long term survivorship with CML' which will take place in central London on Friday 25th September.
Category: Uncategorised

Replies: 1

Last updated: 20 September 2009
Ali Loram on 17 September 2009

Category: Uncategorised

Replies: 6

Last updated: 27 September 2009

starting a support group
by kestrel (Sep 27)

I remember now - I'm the member with the son with CML who lives near Bristol, who you referred to on another thread! It comes back to me that we have had this conversation before..... If you do

by Ali Loram (Sep 23)

Hi Kestrel, I live not far from Exeter, Devon. You?

Ali

by kestrel (Sep 23)

Hi Ali

What part of SW are you please?

kestrel

by Ali Loram (Sep 18)

Sandy, sorry, I have put your contact details in a "safe Place" & now cant find them! Please could I have them agin or feel free to email me, ali@loram2028.fsnet.co.uk. Thanks.

Ali
Category: Uncategorised

Replies: 6

Last updated: 27 September 2009
sue on 16 September 2009

Category: Uncategorised

Replies: 5

Last updated: 7 October 2009

cml seminar in nottingham
by Bhiru (Oct 7)

Hello All,
I've just boooked a hotel for the seminar and thought I would share my findings in case others are still looking for cheaper alternatives to the "delegate discount" that Crowne Plaza are

by Bee (Sep 20)

Hi All
I've not posted on the site for a long, long time but often pop in and have a look. Nice to see some familar names still around. We have also applied to come to the Nottingham Seminar as it's

by sandy craine (Sep 18)

Dear Bob,

I am sure that your registration will ensure you a place. These events are usually organised by the nurses working at the centres concerned rather than professional events

by Cathy Thomas (Sep 17)

Hi, I am new to this group and will introduce myself in a separate posting but I thought you might like to know what I've found out about booking the Crowne Plaza for the seminar. Firstly, the
Category: Uncategorised

Replies: 5

Last updated: 7 October 2009
johnh on 14 September 2009

Category: Uncategorised

Replies: 3

Last updated: 16 September 2009

Vitamin B12 Deficiency
by mariansy (Sep 16)

I'm glad it went well. Mine were done in the afternoon, it was term time so mornings were out. I suppose this might have made a difference.
Must admit I too love having an excuse to eat liver,

by johnh (Sep 15)

Hi Marian,
Thanks for your response. I am sorry to hear that you reacted badly to the B12 injections. I had my first one this morning, fortunately before I saw your post, and am pleased to say that

by mariansy (Sep 15)

Hi John
I had a series of B12 shots due to low counts. Although I wasn't suffering from gastric disorders or fatigue. They were truly horrid, I'm afraid, it felt like a nasty sting and I was

by johnh (Sep 14)

I recently had a blood test because of persistent stomach disorders associated with loss of energy. I have suffered this to a slight extent over the four years I have been taking Glivec but, in the
Category: Uncategorised

Replies: 3

Last updated: 16 September 2009
stella on 13 September 2009

Category: Uncategorised

Replies: 4

Last updated: 23 September 2009

New member
by stella (Sep 23)

Many thanks for those comments. I find looking at this website bucks me up when I am feeling sorry for myself! Everyone is so kind and it is a good source of info. I will think about coming to the

by sandy craine (Sep 18)

Dear Stella,

Welcome to this forum. I would also like to add that I am so sorry you had a miscarriage. I understand from personal experience how that feels.
I am sure as the months go on and

by Bram (Sep 14)

Hi Stella, My heart felt sympathy goes out to you, your husband and your family. That really is sad news.

I, and everyone else on this great site know only too well that very few words can

by kathy (Sep 13)

Hi stella,sorry to hear about the miscarriage and of course the cml,i was 26 when i was dx and its now 6 years on,things are hard to take in at first but with time things get easier,email me anytime
Category: Uncategorised

Replies: 4

Last updated: 23 September 2009
Jo on 12 September 2009

Category: Uncategorised

Replies: 2

Last updated: 13 September 2009

Cord Blood Transplant
by michael (Sep 13)

Hi Jo

Wow you must be one of the first to be in the Kingscord scheme,great news on your progress I to would be interested to hear more.Professor Mufti and his team have come a long way in

by sandy craine (Sep 13)

Dear Jo,

thanks for updating here on your progress. It is great news that your transplant using cord blood as a source of donor cells has been successful and the disease is now at very low

by Jo (Sep 12)

It has been a long time since I have visited this site. I wanted to write to say thank you - I found the forum a very useful source of information during my treatment. I refered to the forum for
Category: Uncategorised

Replies: 2

Last updated: 13 September 2009
Jeanette Douglas on 8 September 2009

Category: Uncategorised

Replies: 2

Last updated: 9 September 2009

Great results (I think!)
by zaviemiller (Sep 9)

Y A H O O O !!! Y I P P E E E !!!

Number 1271 in the Zero Club

Zavie
Jeanette, could you please send me your email address. I have a couple of questions for you.
Thanks
Zavie Miller (

by sandy craine (Sep 9)

Dear Jeanette,

This is such a good result and well in line with the current expectations for a good response.

Side effects do diminish with time for most people and I hope you are not

by Jeanette Douglas (Sep 8)

Hi to All

I haven't posted anything for ages but I have been reading all your topics and have really enjoyed the discussions and reading some great test results. I have just received my
Category: Uncategorised

Replies: 2

Last updated: 9 September 2009