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Sarah R on 20 August 2010

Category: Uncategorised

Replies: 4

Last updated: 21 August 2010

Exam Success!
by skiinglaketahoe (Aug 21)

Hi Sarah and Bill

I was really delighted to hear how well Bill did at A-levels. You all really deserve such good news. It is so nice to see somebody with genuine talent - we are a totally

by lynnsch (Aug 21)

Thats amazing news Sarah!

Please send my heartfelt congratulations to Bill. Hopefully see you at the support meeting in Sept.

Well done and take care all

Lynn x x

by Carol (Aug 20)

Hi Sarah,

What fantastic news you are entitled to be a proud mum and also Congratulations Bill what an acheivement to get an A in your Art but then again you are a natural artist with the work

by Paul C (Aug 20)

As someone currently battling through an Open University English Language and Lit. Honours degree I can empathise with Bill. Thus far (after 4 years) I have maintained As and Bs but sometimes it
Category: Uncategorised

Replies: 4

Last updated: 21 August 2010
maccack on 19 August 2010

Category: Uncategorised

Replies: 4

Last updated: 30 November 2010

Dasatinib & Liver Tests
by sandy craine (Nov 30)

Dear David,

thanks for this information. It is good to get feedback about whether the various strategies people use actually work. Seems like Milk Thistle does have a good effect on elevated ALT

by david_a (Nov 29)

Hi all,

I was diagnosed back in July 2010. I'm on glivec 400mg per day and after settling in to a routine my liver enzyme ALT ran at a "slightly elevated" 55-60 for several months

by maccack (Aug 20)

Thanks Sandy.

I am not sure what I was thinking with my post header. Not sure why I put Dasatinib, should have been Nilotinib!

Anyway, I would tend to agree that Milk Thistle would be

by sandy craine (Aug 19)

Hi CK, yes, there have been many of us over the years who have used this herb to support the liver. There does not seem to be any evidence that it cannot be anything but beneficial when combined
Category: Uncategorised

Replies: 4

Last updated: 30 November 2010
karen lloyd on 18 August 2010

Category: Uncategorised

Replies: 1

Last updated: 18 August 2010

referral to Hammersmith for vaccine
by lisad123 (Aug 18)

just wanted to say thank you for your post. We heard about the injections a few months ago but Darrens specialist didnt know much about it and send it was years away. Darrens no where near the

by karen lloyd (Aug 18)

Hi everyone

Not posted for a long time but do regularly check site to see whats happening. Am treated at Hillingdon Hospital and on 14th June came off Spirit Trial 800mg as my five years were
Category: Uncategorised

Replies: 1

Last updated: 18 August 2010
Steven Davies on 16 August 2010

Category: Uncategorised

Replies: 1

Last updated: 21 August 2010

PCR Animation Video from the CML Society of Canada
by Andy Parkin (Aug 21)

Steven, Thanks for posting this video clip from CML society of Canada. My comments are that it is useful but i felt the actual animated section which attempted to describe "How PCR

by Steven Davies (Aug 16)

Hi Here was a message from Cheryl-Anne from the CML society of Canada.

I thought it might be interesting.

Steven Davies

Hello Everyone,
Please take a few moments and view the video. We
Category: Uncategorised

Replies: 1

Last updated: 21 August 2010
Steven Davies on 15 August 2010

Category: Uncategorised

Replies: 1

Last updated: 16 August 2010

6 years tommorow since I firce went to the doctor.
by Barbs (Aug 16)

I didn't realise that it was 6 years since your dx! I was also dx 6 years ago in May 2004! I took my first Glivec pill on july 1st. It's funny how we remember all that

by Steven Davies (Aug 15)

6 years to the day, tomorrow (Monday) since I went to see my GP. I had an evening appointment and was sent the following moring for a blood test. On the Wednesday(9.am) I was sent for an
Category: Uncategorised

Replies: 1

Last updated: 16 August 2010
jackieb38 on 14 August 2010

Category: Uncategorised

Replies: 16

Last updated: 9 September 2010

Just been diagnosed
by Richard42 (Sep 9)

I had very similar thoughts - but, like the majority of people, Glivec has done wonders and I have got used to the side effects (which have subsided and in my case relatively minor).

by yogiB (Sep 7)

When I as dx last nov, I took off till xmas just to put a good health regime in place and slowy get my head around all I needed to know. Although I did get most of the side effects to start ...

by kurt (Sep 6)

Hi there,

I was dx'd this time last year, initially it was a huge shock,and I had the same side effects, the sore legs were the worst, but now I am almost back to normal, my blood levels are

by fehr (Aug 22)

I was diagnosed in April 2007. The local onc didn't tell me about Glivec and the CML booklet they gave me barely mentioned it. Consequently, I was left for
Category: Uncategorised

Replies: 16

Last updated: 9 September 2010
bobosbo on 13 August 2010

Category: Uncategorised

Replies: 1

Last updated: 21 August 2010

Platelets & Diet
by michael (Aug 21)

Your Platelets will rise over time Bob,I did ask Dr Ho(Kings) if there were any drugs to boost platelets there are, but the side effects cancel the advantages,My all time low is 7,And I had

by bobosbo (Aug 13)

Hello all,

I am looking for any advice that you might have as to how to raise my platelet levels.

Sice I changed drugs from glivec to dasatinib in sept 09, my platelet levels have
Category: Uncategorised

Replies: 1

Last updated: 21 August 2010
lisad123 on 12 August 2010

Category: Uncategorised

Replies: 4

Last updated: 12 August 2010

Blast cells not decreasing
by lisad123 (Aug 12)

he was reffered to HH last week as after 18 months of treatment his BCR's have started to increase, never got lower than 4% and now its up. His care has been terrible in my opinion and we are

by sandy craine (Aug 12)

As Darren's marrow biiopsy/aspirate is showing the presence of Blast cells at 4% I think he should be - at the very least- be monitored at 4 week intervals with bmb's as and when it is

by lisad123 (Aug 12)

sorry yes not very clear. He has one at dx and one at 6months then one today which is 18months since dx

by Richard42 (Aug 12)

Hi

This is something to discuss with HH when you visit. I can't quite tell from your posts which results you're referring to and whether they are blood or bone marrow (you say bmb but I
Category: Uncategorised

Replies: 4

Last updated: 12 August 2010
Smahmood on 11 August 2010

Category: Uncategorised

Replies: 4

Last updated: 12 August 2010

Side Effects of Glivec and other TKI's
by Richard42 (Aug 12)

Hi Shaz

I think the number of people who developed any sort of heart issue during the trials of Glivec was very small indeed and I am not even sure if they ever linked the issue to Glivec. I am

by Vangogh (Aug 12)

Hi Shaz

It is all a bit worrying when you first start. I was dx in June 2008 and I am on 400mg Glivec. I have had minimal side effects, wearyness at the moment is top of the list, nausea,

by Smahmood (Aug 11)

Hello Fernando,

Thanks for your messege. Yes i agree with you that different side effects appear at different time and every one responces differently to the drugs. When i started taking Glivec

by fselman (Aug 11)

Dear Shaz,

I started Glivec 400mg Feb 2008, and have been on it since then. I had the same worries that you have about side effects and could not find a satisfactory answer. I believe that I
Category: Uncategorised

Replies: 4

Last updated: 12 August 2010
irenekallison on 11 August 2010

Category: Uncategorised

Replies: 2

Last updated: 12 August 2010

Centres of Excellence - Southampton?
by irenekallison (Aug 12)

Thanks for that Sandy, interesting CV.

Irene

by sandy craine (Aug 11)

http://www.suht.nhs.uk/ContactUs/Directoryofconsultants/RichardsonDrDeborahSusan.aspx

Dear Irene,

this link might be helpful. Dr. Richardson CV and clinical expertise is impressive.

by irenekallison (Aug 11)

Does anybody know if Southampton falls in this category? My BCR bloods get sent there so wonder if it is.

Thanks

Irene
Category: Uncategorised

Replies: 2

Last updated: 12 August 2010
ADJL on 10 August 2010

Category: Uncategorised

Replies: 8

Last updated: 12 August 2010

Anxiety
by sandy craine (Aug 12)

The subject your have introduced -of the emotional struggle that we, as people that have been diagnosed with a life threatening disease- must face, is important and one that I believe we should

by ADJL (Aug 12)

Once again this site and its patrons have responded with such kindness and support, and I'm really grateful for those who have posted with advice and kind wishes. It is a comfort to know that

by sandy craine (Aug 11)

Dear Adam.... thank you for talking about depression on this forum. The emotions we all struggle with after diagnosis need to be talked through and you are right that the subject is often

by zaviemiller (Aug 10)

Hi Adam,

Congratulations on the upcoming event. If you think that you are concerned about your health, I have a big surprise for you after your child is born. You can never imagine how
Category: Uncategorised

Replies: 8

Last updated: 12 August 2010
Bhiru on 9 August 2010

Category: Uncategorised

Replies: 2

Last updated: 10 August 2010

Food & Drug Interaction Chart
by vickiep (Aug 10)

Was just about to post this link, but would have mirrored some of the comments that Richard has made!

I do think it's worth keeping an eye on this list as my GP prescribed an

by Richard42 (Aug 10)

Hi Bhiru

I would check with Prof Apperley or David Marin. so far as I know the interactions differ from drug to drug and this list is all encompassing. Eg I take omeprazole (low dose) to

by Bhiru (Aug 9)

Hi All,

I recently came across a food and drug interaction chart that has been compiled by the Candian CML Society. It looks like an easy to read fairly comprehensive list, but there are things
Category: Uncategorised

Replies: 2

Last updated: 10 August 2010
lisad123 on 8 August 2010

Category: Uncategorised

Replies: 10

Last updated: 26 August 2010

Hoping someone can help 18 months on and BCR has jumped up
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. You are right

by Patrik Hjortberg (Aug 26)

Hey, sorry for any thread drift but this was the closest one to my situation

I am Swede living in San Diego, but came across this site as quite useful. I got engaged to an American

by vickiep (Aug 10)

Hi Lisa, just a message to lend support to you..my story was extremely similar to Darren's except I couldn't access a Centre of Excellence, but do receive good care at my local. When my

by Richard42 (Aug 10)

I suspect even if they lost results there will be something in Darren's notes indicating stage at diagnosis which would have been recorded at the time. Ask HH to explain blood/
Category: Uncategorised

Replies: 10

Last updated: 26 August 2010
Pennie on 6 August 2010

Category: Uncategorised

Replies: 5

Last updated: 10 August 2010

PCR up again !!!
by zaviemiller (Aug 10)

Hi Pennie,

I am missing something here. Who says that you have to achieve Zero? Certainly not the CML experts.

If one can maintain CCR over a period of years then their CML will not come back

by Andy Parkin (Aug 10)

Sorry to hear about the latest result . Its massively frustrating for you I know. I've a bit of knowledge about slipping in and out of PCRU over the last 9 months - 0,004, PCRU, 0.

by vickiep (Aug 10)

Bugger...

I don't retain anything like as much water on Dasatnib as I did on Glivec..not a scrap of sleep though for days on end resulting in having to use chemical assistance...

by Pennie (Aug 8)

Hi Ali

After nearly 9 years living with CML I guess I just don't ever know whats next !!! At the moment I am on 300g Nilotinib. 200 one day 100 the next. I feel Ok on
Category: Uncategorised

Replies: 5

Last updated: 10 August 2010
Ali Loram on 6 August 2010

Category: Uncategorised

Replies: 3

Last updated: 7 October 2010

Seminar
by sandy craine (Oct 7)

Dear All,

I have contacted the relevant people who are organising the Seminar this year. There is some delay but I will let you know if/how and when as soon as I have been updated.

I agree it

by Steven Davies (Oct 1)

I emailed a consultant at the Hammersmith this week and got the following response.

"It has not yet been decided. It seems that there are difficulties in organising the meeting in

by Sarah R (Sep 30)

Has anyone heard a conference is going to happen this year yet? Some idea of dates would be great so I can arrange time off work.

Best wishes

Sarah

by Ali Loram (Aug 6)

Hi Sandy, just wondering if there is going to be a seminar this year and where the location might be if there is one & guest speakers? It just shows how good they have been for me to ask!!
Category: Uncategorised

Replies: 3

Last updated: 7 October 2010
Ali Loram on 6 August 2010

Category: Uncategorised

Replies: 2

Last updated: 9 August 2010

Nilotinib v Bosutinib.
by sandy craine (Aug 9)

Dear Ali... I hope the steroid support plan works this time. the only people who will have had experience of bosutinib will be from within the trial setting. I will ask around and see if I can

by karen (Aug 6)

Hi Ali

I shall keep everything crossed you get the drug - let us know how you get on

K

by Ali Loram (Aug 6)

This week I went to the Hammersmith & saw prof Apperly, what a great lady she is. We had a in depth discussion about my reactions to the TKI'S and the way forward to manage my cml. The
Category: Uncategorised

Replies: 2

Last updated: 9 August 2010
yogiB on 5 August 2010

Category: Uncategorised

Replies: 5

Last updated: 11 August 2010

Disappointing PCR result!
by yogiB (Aug 11)

Thank you for all your comments - they are really helpful and give me courage to go forward positively.

by zaviemiller (Aug 10)

Hi Beth,

From your results it appears that you have only been tested using the PCR test. This test not very accurate until you have achieved CCR. Since you are not there yet, you might suggest

by Andy Parkin (Aug 10)

As Sandy mentions it would be good to get a referral to Hammersmith or Kings. My personal experience is that the level of expertise is so good compared to local hematology Depts. I managed

by yogiB (Aug 9)

I am being treated by St Peter's and Ashford Hospital trust in Surrey.
Category: Uncategorised

Replies: 5

Last updated: 11 August 2010
mariansy on 4 August 2010

Category: Uncategorised

Replies: 4

Last updated: 5 August 2010

CML and menopause
by mariansy (Aug 5)

Thanks Vickie

My GP is anti giving anything unless absolutely essential - CML or not. I am going to try Sandy's cream which I suspect will be enough. My symptoms are fine except the night

by mariansy (Aug 5)

Thanks Sandy

I have just ordered some of the cream and will try it out.

by sandy craine (Aug 5)

http://agestop.net/Agestop/product_detail.aspx?CID=0&PID=1673

I have found natural progesterone cream to be the most helpful for the symptoms of menopause- see link above

best

by vickiep (Aug 4)

I been using Tridestra (3 month cycle) with no adverse side effects...but if you go the Herbal route (Black Cohosh?) you'd do well to check with a good pharmacist or your Clinician. Sleep is
Category: Uncategorised

Replies: 4

Last updated: 5 August 2010
Elizabeth Rees on 3 August 2010

Category: Uncategorised

Replies: 4

Last updated: 15 August 2010

Peter Capel
by Ashley Strait (Aug 15)

There is little I can add to what has already been said at his funeral. He was larger than life. He was was my neighbour for pretty much most of my growing up years. I am Godmother to

by Steven Davies (Aug 3)

One of lifes true Gentleman. Both Carol and I were saddened to hear of Peters untimely pasing. Carol and I saw him only 10 days ago in Weston ward at the Hammersmith. We have known him only

by Pennie (Aug 3)

Oh Elizabeth. What sad news. I saw Peter at the CML round table and he was in his usual ebullient, excellent mood. Please pass on my condolences to his family. He was one of the

by sandy craine (Aug 3)

Thank you Elizabeth for letting us know that Peter has died. I am very upset to hear this news. I saw him recently at a roundtable discussion regarding CML therapy- as did Pennie Douglas who
Category: Uncategorised

Replies: 4

Last updated: 15 August 2010
sandy craine on 30 July 2010

Category: Uncategorised

Replies: 15

Last updated: 9 August 2010

Bcr/ABL Still undetectable
by Richard42 (Aug 9)

fantastic Sandy. I know I would very much prefer not to go through a transplant as you did but I always like to hear stories from those who have and have done so well. Definitely boosts

by vickiep (Aug 4)

Excellent news Sandy, well done and I think for many, it will mean a lot that you say it's still nerve-wracking awaiting results!

ATB

by Dennis (Aug 3)

Great news Sandy. Ongoing thanks for your committment to this site as well.

by chrissie (Aug 2)

Congratulations, Sandy. it must be a wonderful feeling to be PCRU for so long. May I repeat what others have said and say a big thank you for this site and all the support and information on
Category: Uncategorised

Replies: 15

Last updated: 9 August 2010