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ypoulton on 9 October 2009

Category: Uncategorised

Replies: 16

Last updated: 8 November 2009

bmb
by fehr (Nov 8)

Each time I have had a BMB, I have asked for Entonox, a BOC breathing mixture of oxygen and nitrous oxide. It works well and reduces the pain to a slight discomfort. It gets out of the system

by Olivia (Nov 6)

I must have been very lucky - had my first one last week with local anaesthetic only, and though it was a bit uncomfortable for a few minutes I came away thinking "I've had worse fillings". No pain

by leslie chambers (Oct 14)

hi,all

I was dx 1995 but I only started keeping records in 2000, since then I have had over 20 bone marrow & aspirates. All the early ones were done with just a local anaethetic, but in

by kurt (Oct 13)

When I had my first BML I asked the doctor if this is ever done without anasthetic, he replied no, it would be considered assault, he reckoned no-one would lie there and take that without an
Category: Uncategorised

Replies: 16

Last updated: 8 November 2009
Pennie on 8 October 2009

Category: Uncategorised

Replies: 5

Last updated: 12 October 2009

PCR result help needed to interpret please.
by kestrel (Oct 12)

Fantastic news Pennie - has it sunk in????

Love kestrel

by skiinglaketahoe (Oct 9)

Nice news Pennie.
Keep going!
Susan

by Pennie (Oct 9)

Hi everyone
just got this email from my Oncologist.
'Good afternoon Pennie,

Yes, this is 0.000 , with a good sensitivity of more than 100,000

Best wishes.
All I can say is Wow, and

by zaviemiller (Oct 9)

Hi Pennie,
You need to now what the sensitivity of the PCR test is for it to have meaning.
If the sensitivity is 1 in 1,000 and you are PCRU it doesn't mean that you are PCRU if the sensitivity is
Category: Uncategorised

Replies: 5

Last updated: 12 October 2009
rebecca on 7 October 2009

Category: Uncategorised

Replies: 2

Last updated: 31 October 2009

When to stop taking Glivec before transplant?
by zaviemiller (Oct 31)

Hi Rebecca,
I asked Dr. Olavarria your question on your behalf and this is his response. I hope that it helps.
Zavie
zmiller@sympatico.ca
Hi Zavie,

Unfortunately, I do not check this email

by sandy craine (Oct 9)

As far as I know I think you can take Glivec pretty much up to the day you are admitted... but that would depend on your blood counts and how you are responding, and also on the transplant protocol

by rebecca (Oct 7)

I am hopefully having a cord blood transplant early November and was wondering how long do people stop taking Glivec before a transplant? I am currently on 800mg/day,
Thanks,
Rebecca
Category: Uncategorised

Replies: 2

Last updated: 31 October 2009
kurt on 6 October 2009

Category: Uncategorised

Replies: 15

Last updated: 1 November 2009

Recently diagnosed CML
by kurt (Nov 1)

Thanks Marian, good to know. I never read the 'grapeFRUIT' part, just saw 'grapes'. I heve never enjoyed grapefruit, so this will be no loss to me.

Wine in moderation, that's good. Thanks for

by mariansy (Oct 31)

It is grapefruit juice you need to avoid not grapes or their juice. As for wine I still drink it with my oncs knowledge. Just don't over do it as Glivec can be pretty tough on the liver, as is wine

by kurt (Oct 30)

I see grape juice is a big no-no, what about wine? Comes from grape juice so it could also be a no-no...

by kurt (Oct 25)

I need to start doing exrercise again, but being short of HB makes it difficult. I don't smoke, gave it up 8 years ago, and dring very little, maybe a beer a month, and dislike grapejuice anyway. I
Category: Uncategorised

Replies: 15

Last updated: 1 November 2009
Pesty on 5 October 2009

Category: Uncategorised

Replies: 4

Last updated: 7 October 2009

The contraceptive pill, Mayday, jabs and Glivec
by Pesty (Oct 7)

Hi all
I have just returned from an overnight stay at the hospital! I had the pneumonia and flu jabs on Monday afternoon at my GPs and by yesterday my temp was up to 39.4! After a quick check to

by Pennie (Oct 6)

Hi I live in Morden - and am treated at Kings College hospital. The dept is great and the Drs also. Share care should be a possibility if the journey is to much for regular visits. The PCR tests

by sandy craine (Oct 6)

You might want to read up on the latest EMEA guideline'S for vaccines regarding protection against complications of H1N1 flu virus. Look under Newswire.
I am sure the contraceptive pill is not

by karen (Oct 5)

HI there
Welcome to the wonderful world of CML!

Stopping/ changing taking the pill was never mentioned once to me and I have taken it throughout Glivec and now on Dasatanib. I too used to get
Category: Uncategorised

Replies: 4

Last updated: 7 October 2009
sandy craine on 4 October 2009

Category: Uncategorised

Replies: 2

Last updated: 12 October 2009

post by new member- from previous thread.
by kestrel (Oct 12)

I posted on the end of the previous thread, but now see it has been made into a new thread. Regarding DLA - it would be worth asking to speak to the hospital social worker. We did that and she

by Cathy Thomas (Oct 6)

Hi Karashan and welcome to the CML family.
My goodness you do have a lot on your plate! I do feel for you as I have come to realise that the families of CML sufferers often have as tough a time of

by sandy craine (Oct 4)

Hii am new to this site my

Submitted by karashan on Sat, 2009-10-03 07:50.
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
Category: Uncategorised

Replies: 2

Last updated: 12 October 2009
sandy craine on 2 October 2009

Category: Uncategorised

Replies: 2

Last updated: 4 October 2009

Pandemic influenza (H1N1)- EMEA website
by sandy craine (Oct 4)

dear Don...... thanks for your update and also for outlining how this pandemic is of an 'ordinary type' flu. I am glad... firstly that your grandkids have got through it without complication and

by Don Adkins (Oct 3)

Hi Sandy,
As I sit at home right now with a case of H1N1, I think how timely this article is. My case started Monday night after babysitting the grand-kids over the weekend. They were both

by sandy craine (Oct 2)

Please note the link under Newswire, to the EMEA (European Medicines Evaluation Agency) Pandemic influenza (H1N1) website
Category: Uncategorised

Replies: 2

Last updated: 4 October 2009
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