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ruddoug09 on 18 November 2012

Category: Uncategorised

Replies: 3

Last updated: 20 November 2012

Glasgow patient day
by sandy craine (Nov 20)

Hi Neil and Olivia,
Good to meet up with you too- even though there was not much time to talk.
All in all I thought it was a good meeting although I was not able to get to the breakout sessions,

by Lyndsey (Nov 19)

Just to add also was a great day and great to see everyone look so well! Olivia I agree with the comment with name badges as would have been nice to meet you both. I did speak to someone regarding

by Olivia (Nov 19)

I'd like to add my thanks - I came away tired, but optimistic and aware of how lucky we are to have so many wonderful people on our side in the fight against this disease.

One minor

by ruddoug09 (Nov 18)

Just a quick note of thanks to everyone involved in the patient day yesterday, hugely informative and well organised. Many thanks to the speakers as well for giving up their valuable time, the
Category: Uncategorised

Replies: 3

Last updated: 20 November 2012
Lydia on 18 November 2012

Category: Uncategorised

Replies: 3

Last updated: 21 November 2012

Looking for a Centre of Excellence
by sandy craine (Nov 21)

Dear Lydia,
I will contact you with the contact details of Liverpool and Leeds. I think the lead haematologists at any of the centres mentioned would be sympathetic- Liverpool is a very good centre

by Lydia (Nov 20)

Thank you for replying so promptly, Sandy. We could go to Manchester, Liverpool or Leeds. There's not much difference in the distance.

by sandy craine (Nov 20)

Hi... side effects are a serious issue if they affect your quality of life and even if you are a good responder you should not just 'put up with' side effects and soldier on.
During the Glasgow

by Lydia (Nov 18)

Could I ask for some advice please? My husband is thinking of asking another consultant for advice on living with the side effects of Glivec. Having been PCRU for 3 years it is obviously working and
Category: Uncategorised

Replies: 3

Last updated: 21 November 2012
Anonymous (not verified) on 16 November 2012

Category: Uncategorised

Replies: 4

Last updated: 21 November 2012

Plural infusions breast
by John555 (Nov 21)

Webnomics Technologies is an asp.net development and outsourcing company providing affordable design and development services. Now a new project of Online store launched, where you can buy online

by jacqui from Colchester (Nov 19)

Hi Linda
I developed a pleural effusion after being on dasatinib for 2.5 years. I had nine months of worry and trying different tablets, I even came off all drugs for over 4 months whilst the

by Anonymous (Nov 17)

Hi Sandy, Thanks for your reply. I am based at the Eastbourne Hospital and at this moment I am still on Dasatinib 100mg. I have had 3 weeks of water tablets and 10 days of steroids.I saw my own

by sandy craine (Nov 16)

Dear Linda,
sorry to hear you have had such a problem with side effects from dasatinib. It is true that a minority of patients develop pleural effusion. I think it sounds like you have had quite an
Category: Uncategorised

Replies: 4

Last updated: 21 November 2012
Pennie on 14 November 2012

Category: Uncategorised

Replies: 8

Last updated: 22 November 2012

Severe rash on Nilotinib anyone?
by sandy craine (Nov 22)

Dear karena,
thanks for updating here on your experience with TKIs and now ponatinib. This is an interesting drug not least because it deals with T315i mutation. exciting times once again, but it is

by karen (Nov 22)

Hi Pennie

It may be worth seeing if you could try Ponatinib. I have had problems with Glivec, Nilotinib and Dasatinib and they allowed me to try Ponatinib (from Hammersmith but Kings are now

by Pennie (Nov 20)

Thank you for your reply Ali. It's a very scary place to be and it helps to know I'm not the only one. I am being front loaded with steroids right now in the hope that I can restart Nilotinib

by Steven Davies (Nov 20)

Hi Pennie
Sorry to hear you have problems again
I'm on Nilotinib and have developed acne roseace on my head .. Taking slow release antibiotics and have a lotion to put on in which seems to be
Category: Uncategorised

Replies: 8

Last updated: 22 November 2012
sharito on 13 November 2012

Category: Uncategorised

Replies: 2

Last updated: 14 November 2012

Advice please
by sandy craine (Nov 14)

Hi Sharon,
This is obviously quite a complex situation and I am struggling with how to advise you about what your consultant might be thinking, but I will try.
Can you say what the problems you had

by Gerry (Nov 14)

Hi Sharon,

I would be looking to change doctors and get a second opinion. There are people who take drug holidays due to side effects and get their response back eventually. Loss of response

by sharito (Nov 13)

Hi,
I've been on glivec for just under four years. I started having problems with it July, I stopped taking it for about 6 weeks then I saw my consultant, and obviously I have since gone back on it
Category: Uncategorised

Replies: 2

Last updated: 14 November 2012
David Fitz on 11 November 2012

Category: Uncategorised

Replies: 12

Last updated: 15 November 2012

A new member, unfortunately :-(
by sandy craine (Nov 15)

Hi Adam... good to hear you are doing well and with such good support from your family, friends and others. As you say- this is so important. Congratulations on the upcoming birth of your second

by ADJL (Nov 15)

Hi David,
So pleased you found this supportive community- diagnosis is a massive shock, but Sandy and others here work wonders in explaining and presenting facts, and the emotional support of

by David Fitz (Nov 15)

Thanks Sandy, that's going to be really helpful. I am allowed fly home this weekend (after a bit of appointment shuffling!) to see my family, so I am not really sure how we're all going to react as

by sandy craine (Nov 13)

David,
I completely understand you saying that is the biggest stress. My family live in the north (Liverpool) and I found it very difficult/impossible to tell them about my diagnosis over the phone
Category: Uncategorised

Replies: 12

Last updated: 15 November 2012
gizmos mum on 9 November 2012

Category: Uncategorised

Replies: 3

Last updated: 11 November 2012

Iron supplements and vitamins
by sandy craine (Nov 11)

In my experience, iron supplements can cause constipation (very undesirable!)so you are doing the right thing to try to overcome low HGB count by including dark green veg etc. in your diet. Another

by gizmos mum (Nov 9)

Thanks Sandy. I have been eating lots of greens and spinach to try get my iron up as i am anaemic but i think it is caused by the treatment. i will ask doc again next time but i am pretty sure he

by sandy craine (Nov 9)

I think there are lots of doctors that do not recommend taking supplements of any kind- as far as I know we can get a lot of iron from everyday food such as tomatoes etc. However, opinions differ

by gizmos mum (Nov 9)

Hi, thank you Sandy for the link about supplements to help those who suffer with thier eyes on TKI's.Just out of curiosity, I was advised by my consultant last time to not take any vitamin
Category: Uncategorised

Replies: 3

Last updated: 11 November 2012
Ali Loram on 7 November 2012

Category: Uncategorised

Replies: 2

Last updated: 9 November 2012

BMT
by sandy craine (Nov 9)

Dear Ali,

I follow your caringbridge posts carefully and I am pleased to hear you have reached the bit where you 'escape'and after only 21 days after your SCT! I am sure being semi-independent

by Alastair C (Nov 8)

Ali
To borrow a quote from Craig on "Strictly"
FAB-U-LOUS
great to hear your progress, and thanks for sharing it with everyone.
Alastair

by Ali Loram (Nov 7)

Hi all, this is just a quick update to let you know where I am following my reduced intensity BMT.
I am + 21 days today and feeling very well! I am going to the apartment in Bristol and will
Category: Uncategorised

Replies: 2

Last updated: 9 November 2012
teddyb on 6 November 2012

Category: Uncategorised

Replies: 5

Last updated: 7 November 2012

6 month PCR results
by teddyb (Nov 7)

Thank you Sandy :)

by sandy craine (Nov 7)

Teddy, what a great response- so glad we can share and 'feel' your happiness! Enjoy those tears of joy- they are the best kind!
Sandy

by teddyb (Nov 6)

Thank you Lyndsey and Don.
When i first read the pcr results, there were a few tears of joy, so yes, im over the moon :)
Having a few glasses of red wine tonight :)

by Don Adkins (Nov 6)

Hi Teddy,
Celebrate! Great count...
Cheers,

Don
Category: Uncategorised

Replies: 5

Last updated: 7 November 2012
robert mcadie on 5 November 2012

Category: Uncategorised

Replies: 4

Last updated: 7 November 2012

discs
by robert mcadie (Nov 7)

Thanks all
you have given me some hope that it is just pure bad luck.
Thank you
Robert

by sandy craine (Nov 6)

Hi Robert,
I would agree with both Don and Alastair. I have been following various online CML lists since 1999 and cannot recall seeing this as a side effect of TKI therapy. I am sorry you are

by Don Adkins (Nov 6)

Hi Robert,
I was diagnosed over ten years ago and follow numerous CML forums and I've never heard of this problem.
Sorry I couldn't be more helpful.
Cheers,

Don

by Alastair C (Nov 5)

Robert this is not one I have ever heard (I'm 5 years post dx, and a regular reader of these pages. Maybe your surgeon is right and you are just a statistical anomaly - but then we all are to some
Category: Uncategorised

Replies: 4

Last updated: 7 November 2012
Lyndsey on 5 November 2012

Category: Uncategorised

Replies: 1

Last updated: 6 November 2012

Update on choices trial
by sandy craine (Nov 6)

Dear Lynn, this trial is really interesting and I am glad the computer saw fit to randomise you to the IM + chloroquine arm. PLEASE keep us updated about how you respond - I too am really hoping

by Lyndsey (Nov 5)

Hi there

Just thought I would update here to say I joined the CHOICES study today and I was randomised with imatanib and hydroxychloroquine 800mgs. So will start taking 400mg in am and 400mg
Category: Uncategorised

Replies: 1

Last updated: 6 November 2012
fileokingsley on 5 November 2012

Category: Uncategorised

Replies: 2

Last updated: 6 November 2012

Hello
by sandy craine (Nov 6)

As Alastair has already said, please let us know if you need any advice regarding CML, your diagnosis and/or treatment options.
Best wishes,

Sandy

by Alastair C (Nov 5)

Hi - feel free to let us know anything about CML which is worrying you. We have all been helped by people on this board, and are happy to help the new members of the club to which none of us made a

by fileokingsley (Nov 5)

Hi. I am new here.
Category: Uncategorised

Replies: 2

Last updated: 6 November 2012
jacqui from Col... on 3 November 2012

Category: Uncategorised

Replies: 1

Last updated: 8 November 2012

Weight loss on Nilotinib
by clive walpole (Nov 8)

Hi Jacqui,
I've been on Nilotinib for a couple of years now and have lost a couple of stone. I think it's from the fact that I don't snack as much as I used to because of the fasting. Hope this

by jacqui from Colchester (Nov 3)

Just wondering if anyone else has lost weight taking Nilotinib it would be comforting to know
Regards to you all
Jacqui
Category: Uncategorised

Replies: 1

Last updated: 8 November 2012
kathy on 29 October 2012

Category: Uncategorised

Replies: 1

Last updated: 29 October 2012

joint pain
by sandy craine (Oct 29)

Hi Kathy,
maybe try magnesium oil. see my post on this below. Otherwise you could try requesting a change of therapy to a 2nd gen TKi as it is related to long term side effect of imatinib.
Sandy

by kathy (Oct 29)

Hi all,havent posted for a long time,its been 9years since i was diagnosed.Justa quick question,what do you take for joint pain,havent had it this bad since i first went on glivec,even though it
Category: Uncategorised

Replies: 1

Last updated: 29 October 2012
ni2i on 29 October 2012

Category: Uncategorised

Replies: 8

Last updated: 13 November 2012

PCR result over the moon
by joflo (Nov 13)

Well done : ))))

by karen (Nov 2)

That is great news.

kx

by Don Adkins (Nov 2)

It's time to party.....well done.
Cheers,

Don

by david_a (Oct 31)

well done! Definitley worth celebrating and being chuffed about.
Category: Uncategorised

Replies: 8

Last updated: 13 November 2012
MaggieT on 26 October 2012

Category: Uncategorised

Replies: 3

Last updated: 27 October 2012

A new member
by MaggieT (Oct 27)

Thanks for the words of encouragement

by marsy (Oct 27)

Hi Maggie

Welcome to the club that nobody really wants to be a member of, if we had the choice !!
As Sandy mentions,all of us who log into this site have gone through exactly the same as you

by sandy craine (Oct 27)

6 months is not very long from diagnosis and I am not surprised you are finding it difficult to come to terms with your diagnosis.
Many members of this forum (and there are up to 7500 individuals

by MaggieT (Oct 26)

Hey there,
Just wanted to introduce myself.
I got diagnosed with CML six months ago. I'm responding well to treatment, but have found coming to terms with the diagnosis and how to manage living with
Category: Uncategorised

Replies: 3

Last updated: 27 October 2012
nigel on 24 October 2012

Category: Uncategorised

Replies: 2

Last updated: 25 October 2012

Complete Cytogenetic Remission, a good day...
by sandy craine (Oct 25)

Dear Nigel... that's great news, many congratulations. I can feel your relief!

I hope you and your family take time to celebrate you reaching this important goal.

Very best wishes,

by Olivia (Oct 25)

Well done Nigel - it's great to know the drugs work, isn't it? Hope to meet you in Glasgow.

Olivia

by nigel (Oct 24)

Got my result from my 12 month bone marrow biopsy today : Complete Cytogenetic Remission, really over the moon.
Hope all are well, and looking forward to Glasgow Nigel
Category: Uncategorised

Replies: 2

Last updated: 25 October 2012
RodM on 20 October 2012

Category: Uncategorised

Replies: 2

Last updated: 24 October 2012

Moving to Greenwich...
by RodM (Oct 24)

Thanks, Sandy, I'll ask at my next visit.
Rod

by sandy craine (Oct 20)

Hi Rod, I think your nearest would be Kings? There are quite a few members of CMLSg who are currently treated there so I expect they will be able to advise better than I.
I recently moved to East

by RodM (Oct 20)

Hi
I'm moving to Greenwich fairly soon and I wondered if anyone had a recommendation for which hospital to get referred to.
I assume that if I do nothing, I'll just get allocated to a hospital trust
Category: Uncategorised

Replies: 2

Last updated: 24 October 2012
sandy craine on 20 October 2012

Category: Uncategorised

Replies: 3

Last updated: 18 April 2013

Jeanine is Running For CML Support Group
by Steven Davies (Apr 18)

Hi
Janine is now in top gear to run the Marathon on Sunday lets give a final helping hand to get her one her target.

You can make a donation at her just giving site.
Thanks to those of you who

by Steven Davies (Feb 22)

Hi. Janine's training is going well. As you my realise Janine is running for CMLSUPPORT. Please encourage her by visiting her

Just giving site and help reach her target and go beyond it.

by Steven Davies (Oct 21)

Janine has very kindly offered to run and raise money for CMLSupport.

It would be nice to get a group together and go and cheer her on, on the day.

Nearer the time we will make plans to

by sandy craine (Oct 20)

After the initial shock of discovering I had been ‘fortunate!’ enough to win a ballot place for the London Marathon 2013, I realised it would be a wasted opportunity if I didn’t try to raise money
Category: Uncategorised

Replies: 3

Last updated: 18 April 2013
Spitfire on 18 October 2012

Category: Uncategorised

Replies: 4

Last updated: 21 October 2012

Home remedies for side-effects
by sandy craine (Oct 21)

For those who are/might be interested in learning more about symptoms of low magnesium and how to best supplement with this important mineral, please take a look at the following link to

'

by Spitfire (Oct 19)

Thanks for the tip I will give this a go too! I do get cramp in my toes sometimes, and my joints are a bit odd as well, not sure if this is just old age setting in!
Good to hear about your tennis,

by sandy craine (Oct 19)

Alastair,good to hear some feedback about using MagOil to counter side effects such as cramps, joint pain etc. Thanks also for the tip about buying through Amazon.I will try that in future- I still

by Alastair C (Oct 19)

Sue, quite a few people have (at Sandy's suggestion) used magnesium oil to help specifically with cramp. I play tennis 3-4 times/week, and do suffer from cramp more since I started glivec (over 5
Category: Uncategorised

Replies: 4

Last updated: 21 October 2012