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EmChops on 27 June 2011

Category: Uncategorised

Replies: 5

Last updated: 5 July 2011

questions i feel silly asking my consultant...
by EmChops (Jul 5)

Thank you everyone for taking the time to write reply's to my questions.

I really do appreciate all your help as I try to understand and come to terms with having CML.

Could not get by

by Richard42 (Jun 28)

Your questions are excellent and reflect the experience of many - I don't think there are any particular answers to any of them (except perhaps cytogenic remission, which is as Sandy says somewhere

by sandy craine (Jun 28)

Q. At what percentage are you in cytogenetic remission?

A. Depends on which lab does your pcr. There is no standardisation of labs as yet- this has

been an ongoing project for some

by Jojo (Jun 28)

Hi Emma

I'd just thought I'd chip in, not that I'm an expert or anything. My consultant never uses the word remission, he talks about levels of response. He also talks about 'log reduction' -
Category: Uncategorised

Replies: 5

Last updated: 5 July 2011
michelle on 26 June 2011

Category: Uncategorised

Replies: 3

Last updated: 22 August 2013

dasatanib - itchy acne like skin
by RodM (Aug 22)

Hi
I also got the spots/rash and itchy skin, but 17 months after starting Dasatinib, it has mostly gone away, with things calming down after about 6 months.
I definitely still get spots,

by marsy (Jun 26)

Hi Michelle,
I'm on the Spirit 2 trial and after a few weeks the only side effect I have is the acne spots. I started on the trial last September and at first was getting some rashes on the body(

by Jojo (Jun 26)

Hi Michelle

Yes I do think there can be skin problems with the TKIs including dasatinib. In my case it was being monitored by my consultant and nurse as part of the Spirit 2 trial. It is

by michelle (Jun 26)

Hi, I have only been on dasatanib for 3 weeks. Made switch from glivec which I had been taking since 2003. I have had some awful headaches. But now i have started getting acne like skin. But my skin
Category: Uncategorised

Replies: 3

Last updated: 22 August 2013
JONESYGEEZ on 21 June 2011

Category: Uncategorised

Replies: 1

Last updated: 21 June 2011

Chemotherapy
by sandy craine (Jun 21)

See my post below

by JONESYGEEZ (Jun 21)

Hi All,
Just a real quick and direct question, can chemo cure or remission CML?
My dads got 7 days starting this friday then they said they'd monitor him? I thought it was chemo then transplant not
Category: Uncategorised

Replies: 1

Last updated: 21 June 2011
chrissie on 20 June 2011

Category: Uncategorised

Replies: 1

Last updated: 20 June 2011

Reply to my MP's PQ from Paul Burstow, Min. of State for Care Services at DoH
by Alastair C (Jun 20)

What I sincerely hope this means is that they are wondering if spending a lot of money with various health statisticians at for example Exeter, Souhampton and West Midlands is value for money

by chrissie (Jun 20)

My MP has submitted a written PQ to both Paul Burstow and Andrew Lansley. Below I have posted the question and Paul Burstow's reply. Nothing yet from Lansley, but my MP has asked me to contact him
Category: Uncategorised

Replies: 1

Last updated: 20 June 2011
Smahmood on 19 June 2011

Category: Uncategorised

Replies: 2

Last updated: 20 June 2011

Glivec
by Smahmood (Jun 20)

Hi sandy
Thanks for the help/info.
Regards
Shaz

by sandy craine (Jun 20)

I am sure that it is OK to take supplements whilst taking TKI therapy. Take vitamin supplements with food- maybe with a different meal than imatinib (Glivec).
check that there is nothing in the

by Smahmood (Jun 19)

Hello everyone
Does anyone know if I can take wellman support supplement whilst on glivec 400mg daily?
Thanks

Shaz
Category: Uncategorised

Replies: 2

Last updated: 20 June 2011
jackieb38 on 18 June 2011

Category: Uncategorised

Replies: 3

Last updated: 20 June 2011

Now in Blast phase
by Jojo (Jun 20)

Hi Jackie

I'm so sorry and shocked to hear of the change in your cml - when I saw the post about your platelets dropping I meant to msg you as mine did that on dasatinib(went down to 12) and

by michael (Jun 19)

Quite a few people jump from the chronic stage straight to the blast stage( bypassing the accerated stage that would show blasts in the peripheral blood).

Jackie I Spend a couple days a week

by sandy craine (Jun 19)

Dear Jackie... I am sorry to hear this and I am amazed you had 40% blasts in your marrow without evidence in you peripheral blood- surely there must have been blasts in your blood?
- but I am glad

by jackieb38 (Jun 18)

Hi all,

Just a progress report on me!

I was admitted to hospital Thursday as, after two weeks off dasatinib, my platelets still hadn't recovered and my white count had shot up, so they
Category: Uncategorised

Replies: 3

Last updated: 20 June 2011
Steven Davies on 17 June 2011

Category: Uncategorised

Replies: 5

Last updated: 19 June 2011

Now a letter from Earl Howe, Parlimentary Under Secretary of Stae for Quality (Lords)
by sandy craine (Jun 19)

We intend to answer the letter from Earl Howe (and Andrew Lansley) asking for answers to the original points contained in our letter. These answers are of course authored by an official- so we will

by David (Jun 19)

I too have received the same letter from Andrew Lansley via my MP - almost exactly word for word.
It doesn't, of course, answer any of the points I made, such as the Scottish question, the

by sandy craine (Jun 18)

We have also had a reply from Howe which is the same apart from a first paragraph which stresses that Howe is replying on behalf of Andrew Lansley as well has himself. A second para acknowledges the

by irenekallison (Jun 18)

My MP forwarded the same letter - which arrived here today and included the letter from Sir Andrew Dillon.
Category: Uncategorised

Replies: 5

Last updated: 19 June 2011
Apryl on 17 June 2011

Category: Uncategorised

Replies: 5

Last updated: 20 June 2011

FEELING VERY DOWN
by Ali Loram (Jun 20)

Hi Apryl,

I asked my consultant at my local hospital to refer me to HH. I think its polite to do it this way as your consultant has been treating you & can also pass on all your patient

by Sarah R (Jun 19)

Dear Apryl
My son is under the sole care of the Hammersmith which is his choice. He got there simply by making his wishes clear to his GP who wrote to Professor Applerley requesting it. Give it a

by Apryl (Jun 19)

Thanks for your replies Ali & Sandy

I was not aware that you could have joint care, its certainly something I will look into.

I must admit, I did feel very short changed after my

by sandy craine (Jun 18)

Apryl, as long as you respond to therapy (in this case nilotinib) you should be guaranteed continuation no matter what the outcome with NICE is.

However, I would encourage you to change your
Category: Uncategorised

Replies: 5

Last updated: 20 June 2011
liz on 15 June 2011

Category: Uncategorised

Replies: 3

Last updated: 17 June 2011

Advice please
by liz (Jun 17)

I didn't know that, I thought you felt ill when neutropenic. Thanks for letting me know. I still feel awful, haven't been out of bed in days!! I called the CML nurse's in clinic, who have got me a

by michael (Jun 15)

As Richard said neutropenia on its own wont make you feel ill,have you a temperture?,You might have a infection, You need a blood test ASAP,I would go to A&E or Urgent treatment centre, full

by Richard42 (Jun 15)

I'm not an expert but neutropenia itself won't make you feel ill I think - what it does is reduce your ability to fight infections, so if you catch one (viral or bacterial) then the body has a

by liz (Jun 15)

Hi,
I have posted before re stomach pains and taking Glivec. Well to cut a long story short, I thought Glivec was causing me really bad stomach pain. So in April I decided to come off it and see if
Category: Uncategorised

Replies: 3

Last updated: 17 June 2011
sandy craine on 26 July 2011

Category: Uncategorised

Replies: 6

Last updated: 27 July 2011

Spammers
by sandy craine (Jul 27)

A Big thanks to Roger for dealing with the spam attack so comprehensively... we now have a new anti spam software installed which I am sure will deal with the problem.
Roger has been a very

by Alastair C (Jul 27)

It is also possible to raise funds for CMLSg via http://cmlsg.easysearch.co.uk
This site makes a donation every time you search - uses Bing and Yahoo search tools.
Latest from Easyfundraising is

by admin (Jul 26)

I have put some "hopefully" stronger anti-spammer measures in place and have reenabled signups. Let's see how that goes (fingers crossed!).

Regards,

Roger - CMLSupport

by admin (Jul 26)

Hi all, I have temporarily suspended new signups while I clear out all the spam messages and see if we can make it harder for the spammers to sign up in the future. Sorry to any new visitors who
Category: Uncategorised

Replies: 6

Last updated: 27 July 2011
Steven Davies on 14 June 2011

Category: Uncategorised

Replies: 6

Last updated: 17 June 2011

Letter received today from my MP from Sir Andrew Dillon Chief Executive NICE
by Barryphilipallsop (Jun 17)

Oliver Letwin my local MP replied to my letter basically saying that he has no influence over NICE but did show interest in the matter and said should I fail on Imatanib I was to contact him.

by Richard42 (Jun 16)

I returned home last night to find a reply to my MP from Andrew Dillon and a reply from the DoH to my letter to Andrew Lansley. The latter did not deal with the points made in my letter - in fact it

by Alastair C (Jun 16)

I really struggle with Dillon saying "our appraisal process is designed to produce robust evidence- based recommendations for the NHS" when the ACD talked about the "least implausible analysis" as

by sandy craine (Jun 15)

At long last I have received a copy of a letter sent by my local MP- Lynne Featherstone, (Jumior Minister for Equalities in Home Office) to Sec of State for Health.

I must say it has taken her
Category: Uncategorised

Replies: 6

Last updated: 17 June 2011
Smahmood on 13 June 2011

Category: Uncategorised

Replies: 12

Last updated: 23 August 2011

Glivec and hair fall
by satanay (Aug 23)

Hi , Am on Glivec for 3 months and so , in addition to many side effects am suferring hair loss is an addition, am even losing my eye brows and the medical team have no clues

by sandy craine (Jul 4)

This was copied by member of thyroid Uk discussion forum because links to UK press are not available for those outside UK.
MAIL ON SUNDAY 3rd July 2011 REVIEW SECTION

- PAGE 23 -

THYROID

by Smahmood (Jun 16)

Hi michael

Yes I do agree we do want to be seen by a consultant. I think I have to stress in my next clinic appointment to see Dr Mufti. I have heard Dr Mufti is very good.
Shaz

by Smahmood (Jun 16)

Hi pennie

I am sorry I thought you lived in staines (must have seen someone writing here about living in staines). I live in twickenham. So sure a coffee would be great.

And once again
Category: Uncategorised

Replies: 12

Last updated: 23 August 2011
JONESYGEEZ on 13 June 2011

Category: Uncategorised

Replies: 23

Last updated: 9 September 2011

My Dad
by ADJL (Sep 9)

Hi Nick,
Just to offer my condolences- I can't imagine what a shock this period has been for you and your family and I hope that you get strength from the fact that there is so much work going

by JONESYGEEZ (Sep 8)

Yes, have chosen leukemia and lymphoma research
Many thanks

by Jojo (Sep 8)

Hi Nick
I am so sorry to hear the news of your dad's death. Wishing you strength in the time ahead and do keep in touch here - that may be some sort of comfort in the days ahead.
Like Ali, I

by sandy craine (Sep 4)

Dear Nick,
Please accept my deep condolences on losing your dad. I am so sorry that his CML was so difficult to control.
I am reassured that you were able to find some help/support/advice from the
Category: Uncategorised

Replies: 23

Last updated: 9 September 2011
louisepim on 26 July 2011

Category: Uncategorised

Replies: 7

Last updated: 27 July 2011

stiffness in muscles in hands and cramps in legs on Glivec 400mg
by sandy craine (Jul 27)

I really do recommend magnesium oil- you can get this in spray form at most of the high street chemists etc. you can also buy it online.
I did not take it with me on holiday and have noticed

by tommy c (Jul 27)

hi, been on imatinib for 4years 800mg, had cramps from the start was prescribed quinine 300mg daily and had no cramps since, hope this helps!
regards tc

by michelle (Jul 27)

Hi, Louise,
I was on Imatanib for 7 years and have now been moved onto Dasatanib. Whilst on Imatanib 400mg I suffered bad cramps and it was worse at night/morning. I was precribed quinnine to be

by Stuart Johnston (Jul 27)

I have been experiencing these since i started on glivec 2 years ago. The best thing i found to control the cramps is to eat banana's. This seems to work well and has greatly reduced the severity
Category: Uncategorised

Replies: 7

Last updated: 27 July 2011
EmChops on 11 June 2011

Category: Uncategorised

Replies: 3

Last updated: 16 June 2011

acai berries
by Acai Berry (Jun 16)

The acai berry has a natural combination of antioxidants. It helps in reducing craving for food, increase energy levels of the body.

by cmlblogger (Jun 13)

plenty online about this research from way back
http://news.ufl.edu/2006/01/12/berries/
no idea about the details of the study
however Innocent do a really nice smoothly with Acai in with i think

by sandy craine (Jun 11)

If only that were true ;o) but I am sure it would do no harm for you to take supplements as long as this one is not contra-indicated with your therapy.
Sandy

by EmChops (Jun 11)

Just saw a news report (it was american, university in Florida) that said the acai berry can blast 80% of leukaemia cells.

Anyone know anything about this?

I see they sell supplement
Category: Uncategorised

Replies: 3

Last updated: 16 June 2011
Lyndsey on 27 July 2011

Category: Uncategorised

Replies: 7

Last updated: 28 July 2011

Insurance for travel to usa
by Richard42 (Jul 28)

I was and am on imatinib, 400mg. It seems to work very well for me. Is my CML still there? Who knows.I assume so but it's possible I might try a future "stop" or dose

by Richard42 (Jul 28)

I was and am on imatinib, 400mg. It seems to work very well for me. Is my CML still there? Who knows.I assume so but it's possible I might try a future "stop" or dose

by Lyndsey (Jul 28)

That's fantastic and I love hearing stories like these. I assume u were on a different drug from imantinib?

by Richard42 (Jul 28)

Hi Lyndsey
Fully agree it's good to think about other things - and do things you want to do. It does get easier over time - for me, the initial six weeks or so were the hardest but as
Category: Uncategorised

Replies: 7

Last updated: 28 July 2011
ian hinley on 11 June 2011

Category: Uncategorised

Replies: 1

Last updated: 11 June 2011

Five-Year Follow-Up Data for SPRYCEL® (dasatinib) 100 mg Once Daily
by ian hinley (Jun 11)

http://www.businesswire.com/news/home/20110603005852/en/Five-Year-Follow-Up-Data-SPRYCEL®-dasatinib-100-mg

by ian hinley (Jun 11)

Five-Year Follow-Up Data for SPRYCEL® (dasatinib) 100 mg Once Daily Demonstrated 78 Percent Overall Survival in Patients with Chronic-Phase Chronic Myeloid Leukemia Resistant or Intolerant to
Category: Uncategorised

Replies: 1

Last updated: 11 June 2011
jackieb38 on 10 June 2011

Category: Uncategorised

Replies: 1

Last updated: 10 June 2011

Pain
by sandy craine (Jun 10)

How long has your wbc been rising or has it been at 15 for a while? Your platelet count is low but at 66 I think that it might be wise for your doctors to consider trying a low dose of dasatinib

by jackieb38 (Jun 10)

Hi,

I was put on Dasatinib a month ago after becoming resistant to Glivec but was only on it for 2 weeks before my platelets dropped too low and I had to stop.

Saw my haematologist
Category: Uncategorised

Replies: 1

Last updated: 10 June 2011
sandy craine on 10 June 2011

Category: Uncategorised

Replies: 1

Last updated: 10 June 2011

North West media-links to NICE Protest
by sandy craine (Jun 10)

I have posted the links on the home page. I have also shared the various TV and media links with Facebook groups and individuals.
best to all,

Sandy

by sandy craine (Jun 10)

Fiona, Stella, Steven and Richard- sent the media links... I have compiled them all (I think I have them all) and put them here...see below. I will also upload them to the home page so that they
Category: Uncategorised

Replies: 1

Last updated: 10 June 2011
jackieb38 on 9 June 2011

Category: Uncategorised

Replies: 1

Last updated: 9 June 2011

Got the following e-mail off my MP today
by Richard42 (Jun 9)

Hi
What he's referring to is a change in policy regarding pricing and reimbursement of NHS drugs that's planned to come in in 2013 - but the NHS reforms are stuck on other issues so who knows.
My

by jackieb38 (Jun 9)

Hi,

My MP Nigel Mills, finally replied to all the numerous e-mails me, my family and friends have sent him over the past few weeks.

Not sure what to make of it though.
Dear Ms Beresford
Category: Uncategorised

Replies: 1

Last updated: 9 June 2011