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Nansubuga on 2 September 2009

Category: Uncategorised

Replies: 1

Last updated: 6 September 2009

pregnancy
by cassidy62 (Sep 6)

hi Nansubuga, dont know if you read my post from June but i have just given birth to a beautiful baby girl in June, she is 10wks old and so far everything is good. I was diagnosed in October 2007

by Nansubuga (Sep 2)

i want someone to give me hope of having a healthy brother or sister for my little son. I believe there is hope somewhere though unpublished. I am so stressed about it but at the same time not
Category: Uncategorised

Replies: 1

Last updated: 6 September 2009
Comkick1 on 31 August 2009

Category: Uncategorised

Replies: 2

Last updated: 1 September 2009

Glivec Failure
by fish4 (Sep 1)

Hi Mark
My experience was not unsimelar to yours in that Glivec worked wonderfully for the 1st 20 months after DX in January 2006 that my PCR went from just under 2% up to 81% I am now on Tisiga

by vickiep (Aug 31)

Couldn't have been more delighted when they told me that Glivec just wasn't working for me. At 56 I had spiralled into old-age. Am now on Dasantinib and feel very much better for it! Having a bit of

by Comkick1 (Aug 31)

Hi all,
I was DX in October 2008 with Chronic Phase CML, I had a marvelous response coming from 113.553% baseline to 0.468% which was my result in April 2009. However in my July PCR it came back as
Category: Uncategorised

Replies: 2

Last updated: 1 September 2009
pat preston on 30 August 2009

Category: Uncategorised

Replies: 4

Last updated: 15 October 2009

Tasigna for CML and bits and pieces from an old timer.
by Apryl (Oct 15)

I changed over to Tasigna a few months ago due to adverse side affects of Glivec. At first I thought if might have been a mistake to change as I felt like I had been under a bus, my bones ached so

by sandy craine (Sep 9)

Dear Pat,

good to see your post and hear also that you are still 'fighting' in-spite of all the challenges you have had since losing your husband. I am so sorry to hear your grand-daughter is

by valandi (Aug 31)

Pat,
great to here from you again, it seems so long since we last were in touch; looking back I can see it was well over two years, but the advice you gave me when Val was diagnosed was so useful at

by Pennie (Aug 30)

Dear Pat

So great to hear that you are still doing well on Gleevec, 0 PCR - wow, the goal we all aspire to.
I am so sorry to hear about the C diff- not something you needed to deal with. Hope
Category: Uncategorised

Replies: 4

Last updated: 15 October 2009
lynnsch on 22 August 2009

Category: Uncategorised

Replies: 2

Last updated: 10 September 2009

Adoption
by lynnsch (Sep 10)

Hi Sandy,
Thats very helpful thank you, I'll contact the BAAF.
Many thanks

Lynn

by sandy craine (Sep 9)

Dear Lynn,

I am not sure how having CML would affect your chances. I suggest you contact your local authority ask what there attitude is. The 'rules' seem to differ depending on the region you

by lynnsch (Aug 22)

Hi everyone,
I was wondering if anyone with CML had looked into adoption in England? I have heard that cancer suffers have to have had the all clear which I would imagine would count me out? Just
Category: Uncategorised

Replies: 2

Last updated: 10 September 2009
sue on 21 August 2009

Category: Uncategorised

Replies: 2

Last updated: 28 August 2009

advise please on bone scans
by leslie chambers (Aug 28)

Hi Sue,I have had several MRI scans, and a PET scan which involved a radioactive injection with no ill effects at all. I am due to have a "special chromium scan" whatever that is, at the HH,they do'

by Des (Aug 23)

I have a slipped disc from 2 years ago and have undergone x-rays,bone scans, MIRs, also bone density tests for osteoporosis involving nuclear medicine, I was assured they were all safe. If you are

by sue (Aug 21)

Can anyone tell me if they have had a bone scan and if so how was it and how safe is it to have one with cml. I have always suffered from bone/joint/muscle and cramps since starting on gleevic 6
Category: Uncategorised

Replies: 2

Last updated: 28 August 2009
Vangogh on 19 August 2009

Category: Uncategorised

Replies: 2

Last updated: 20 August 2009

BCR/ABL Test Results
by Andy Parkin (Aug 20)

Well done Tony. I know from experience what a great feeling it is when the PCR result comes back and it's trending in right direction!! Best wishes for continuing drop toward 3 log reduction !!

by sandy craine (Aug 20)

Dear Tony,

Many congratulations on a really good response.

I am sure you will continue with this downward trend.
Best wishes,

Sandy

by Vangogh (Aug 19)

Hi Everybody
Just had my last test results. Dx June 2008 and now for the first time below 1% (0.287%). Feeling pretty pleased.
Best Regards

Tony
Category: Uncategorised

Replies: 2

Last updated: 20 August 2009
Des on 18 August 2009

Category: Uncategorised

Replies: 5

Last updated: 3 November 2009

Still undetectable
by Basil from RSA (Nov 3)

Hi all,

I would like to share my good news with the forum, Des and those who follow this thread.
I received the results of my last PCR today and the results are fantastic.

BCR-ABL 9-22

by Basil from RSA (Sep 1)

Hi all,
This is just a short note to let you know the results of my last PCR test done on 20/8/2009.

The BCR/ABL ratio was 0.00083.

This is obviously not an "Undetectable" result and

by sandy craine (Aug 20)

Hello Des, I have been away for a few days so have just caught up with your continuing good news.
I remember reading that patients from the STIM trial who maintained PCRU status for >6 months

by Basil from RSA (Aug 19)

Hi Des,

Great news from your side. My best wishes for ypur great results.
Well I saw my Haematologist today and we did the first tests since comming off Gleevec (400mg per day) at the
Category: Uncategorised

Replies: 5

Last updated: 3 November 2009
sandy craine on 14 August 2009

Category: Uncategorised

Replies: 4

Last updated: 15 October 2009

CML Patient Seminar 2009-
by Apryl (Oct 15)

Hi Sandy
Are you planning on having the usual patient get to gether this year, cant see any details of it on the site. Can you let me know if you are, if we have to register for it and how much it

by sandy craine (Sep 8)

Hi Janet,
Sorry but I am not aware of the doctors that are due to speak at the Seminar in Nottingham. I have not been involved in the organisation of the day and was only provided with the details

by Steven D (Aug 24)

Hi.
It seems the phone number for the Crowne Plaza has recently changed to

0871 9429161
Steven

by Janet (Aug 24)

Dear Sandy and Steven
This looks a very interesting programme. Thank you for your input in organising the day.
Do we know yet which doctors are speaking?
Regards, Janet
Category: Uncategorised

Replies: 4

Last updated: 15 October 2009
jjhollis100 on 12 August 2009

Category: Uncategorised

Replies: 9

Last updated: 20 August 2009

Talk of a BMT
by Andy Parkin (Aug 20)

If it is any help trying to get your consultant to try the plasma level testing then the following may help.

I was diagnosed Spring 07 with CML and on 400mgs Imatinib from april '07. By 6

by jjhollis100 (Aug 18)

Thanks for all the information.
yes i am in CCR and my PCR's for the last couple of years are always around 2%.
I shall go back to hospital in 5 weeks armed with this new info and advice and see

by zaviemiller (Aug 17)

Hi,
I am puzzled at your doctor's comment that you should start thinking about a transplant.
He is the doctor and he should be looking at all the alternatives for you. What about the many drugs

by michael (Aug 14)

Nilotnib was discounted for me because I am Diabetic,without a full history its hard to decide treatment options,but dont let it put you off asking why your options are limited.

Mike
Category: Uncategorised

Replies: 9

Last updated: 20 August 2009
Ali Loram on 12 August 2009

Category: Uncategorised

Replies: 2

Last updated: 12 August 2009

LFT'S & drug interaction.
by Ali Loram (Aug 12)

slip of the fingers there, ofcourse I am taking nilotinib!

My Dr was ok with me taking both drugs together. Had he advised me to stop taking nilotinib then of couse I would have followed his

by sandy craine (Aug 12)

Dear Ali,
Your can get all the answers to these questions if you go to FAQ's/Glossary then scroll down to
What should my liver counts be?

# Total Protein

# Albumin

# ALT (SGPT)

by Ali Loram (Aug 12)

Hi, I had an infection in my leg that required anti-biotics but there has been a drug interaction that affected my liver. I am currently on imatinib. The hospital should have taken me off imatinib
Category: Uncategorised

Replies: 2

Last updated: 12 August 2009
tadlaw on 10 August 2009

Category: Uncategorised

Replies: 4

Last updated: 13 August 2009

US Health Care Reform - Need Single Payer System Advice
by sandy craine (Aug 13)

Hi Tracey,

It might help if you take a look at the following site:
healthcarereformmyths.org
as this one seems to be a little less partisan than some of the others I have read. But maybe

by Andy Parkin (Aug 12)

There was a report on the news in UK this am about President O talking at meeting yesterday while outside demonstrations taking place from some Republicans about likely costs of this reform to US

by tadlaw (Aug 11)

Thanks Michael. Actually, I haven't seen it (though I'm a Michael Moore fan.) I'll rent it. Thanks again.
Tracey

by michael (Aug 11)

Have you seen Michael Moores film Sicko? the Uk footage rings true for me.
Category: Uncategorised

Replies: 4

Last updated: 13 August 2009
Comkick1 on 7 August 2009

Category: Uncategorised

Replies: 6

Last updated: 11 August 2009

2 Log Increase
by cmlblogger (Aug 11)

thanks for the explanation :)
rob - http://cmlblog.spaces.live.com

by sandy craine (Aug 10)

Hi Rob,

I suppose that the figure given by Mark as his baseline PCR is a ratio... so that might confuse those of us that have baseline cytogenetics results given as a percentage.. thus 100% 70

by cmlblogger (Aug 10)

sorry to diverge from your topic of concern
but can anyone explain how you can have a pcr of over 100%?
I thought the PCR was a ratio of leukeamiac cells to toal cells
rob slightly confused by your

by sandy craine (Aug 7)

Hi Mark,

I think you should ring the hospital and ask to speak with your doctor or his secretary so that you can explain how worried you are given the leap in ratio % and that 3 weeks is a
Category: Uncategorised

Replies: 6

Last updated: 11 August 2009
tadlaw on 4 August 2009

Category: Uncategorised

Replies: 2

Last updated: 15 August 2009

Worried about results - Am I over stressing?
by sandy craine (Aug 15)

dear Tracey,
Please see my recent post which gives a link to an article about mutations and TKI therapy.

There is a PDF of the full article and I have made a couple of slides with the Traffic

by Andy Parkin (Aug 5)

Tracey, I can only reflect on my own range of PCR results, which started to trend upwards from a low of 0.139% over 6 months to 0.431%. A plasma level test at this point revealed low levels of drug

by tadlaw (Aug 4)

Hi all,
My 11 y/o son, Ben has cml and was performing phenomenally well on Glivec on 400/500 mg alternating doses. But his numbers started trending from down to upward: .65; .21; .076; .81 (July 1
Category: Uncategorised

Replies: 2

Last updated: 15 August 2009
sandy craine on 4 August 2009

Category: Uncategorised

Replies: 2

Last updated: 12 August 2009

Pneumonia vaccine may help limit swine flu deaths
by karen (Aug 12)

Just had mine as well - it hurt!!! Two days later and I still have a swollen arm - just wanted to winge and get soem sympathy!!! Better that though than bad Swine Flu!!!
Karen

by Ali Loram (Aug 12)

yesterday when I saw my consultant at the hospital, I asked about the Pneumovax vaccine & the consultant thought it a very good idea. So many thanks for the info Sandy, I had the jab done this

by sandy craine (Aug 4)

I was advised by my consultant at HH to have the Pneumovax vaccine in order to protect from a deadly form of bacterial pneumonia. So last week I went ahead had the vaccination at my local surgery.
Category: Uncategorised

Replies: 2

Last updated: 12 August 2009
sandy craine on 3 August 2009

Category: Uncategorised

Replies: 2

Last updated: 4 August 2009

Monitoring CML
by sandy craine (Aug 4)

I am not sure you will find that current guidelines will differ that much year on year. So guidelines from 2007 will be pretty much the standard in 2009.
I have taken a look at the European

by Sneezy123 (Aug 3)

I can only find the 2007 Guidelines, Sandy. Thanks, Frank

by sandy craine (Aug 3)

The British Committee for Standards in Haematology (BCSH) has published “Recommendations for the Management of BCR-ABL-positive Chronic Myeloid Leukaemia” 3 which is available to download from the
Category: Uncategorised

Replies: 2

Last updated: 4 August 2009
sue on 1 August 2009

Category: Uncategorised

Replies: 3

Last updated: 2 August 2009

bone marrow tests in newly diagnosed patients and falling platelet counts
by zaviemiller (Aug 2)

Dear Sue,
Michael is correct. She needs to see a CML expert or at least see a consultant who follows the established guidelines set out by the top CML doctors. Her consultant is making them up as

by zaviemiller (Aug 2)

repeat of above comment

by michael (Aug 1)

Platelet counts of sub 50 is the point that problems occur,I have a 62 platelet count at the moment and have been for some time,but my bone marrow has improved so I am waiting for my platelet count

by sue (Aug 1)

Could anyone tell me how often a newly diagnosed patient should have a bone marrow test, when I was first diagnosed in 2000 I was having them every 3 to 6 months at first until I was clear then if
Category: Uncategorised

Replies: 3

Last updated: 2 August 2009
bobosbo on 29 July 2009

Category: Uncategorised

Replies: 5

Last updated: 10 August 2009

Glivec & Grape Seed Extract
by sandy craine (Aug 10)

Hi Bhiru,

thanks for your information and update about your husband. I remember clearly that you were looking at other possible options. Feverfew has been under discussion on several forums

by Bhiru (Aug 7)

Hello there,

Just to chip in my two cents...

My husband's PCR results plateaued too high last year. Around the same time a mutation was also detected. At that stage there were

by bobosbo (Aug 4)

Hello All,

Having checked with the Hospital, I have been advised not to take grape seed extract as any possible side effects are not known, as clinical trials have not been carried out.

by bobosbo (Jul 30)

Thanks Sandy,

Thanks for that, before going any further I had better touch base with my Dr at the hospital, don't want to upset anyone.

Bob
Category: Uncategorised

Replies: 5

Last updated: 10 August 2009
Pennie on 27 July 2009

Category: Uncategorised

Replies: 7

Last updated: 30 July 2009

Rebecca - CML and AML
by sandy craine (Jul 30)

Dear Rebecca,
Do you mean 3 weeks without having an appointment?

You are following your instincts and if you feel you do not need to know too much detail about your blast cell % at this time

by rebecca (Jul 29)

I had my weekly appt today and all is still fine with blood test, I'm still anaemic though, but it's improving slowly. The best bit is that because of the consistant results I've been given 3 weeks

by sandy craine (Jul 28)

Dear Rebecca,

You doctor is indeed very well respected haematologist with an research interests in 'the pathogenesis and treatment of both chronic and acute myeloid malignancies'.
I think

by sandy craine (Jul 28)

Dear Rebecca,
It might help you (and us) to better understand your exact situation if you asked your doctor what the % of blast cells were in your marrow/peripheral blood at diagnosis and what he
Category: Uncategorised

Replies: 7

Last updated: 30 July 2009
karen on 24 July 2009

Category: Uncategorised

Replies: 5

Last updated: 25 July 2009

PCR Question
by michael (Jul 25)

Early Days,Its a small reduction but hey overtime these add up,its good news and I for one would swap results with you,

depending on white cell counts and plattlets,its quite common for a

by karen (Jul 25)

Hi Susan
I am on 100mg of Dasatanib a day (2 x tablets) and have been since Christmas. This is only my second PCR on Dasatanib so I think the gaps are around 4 - 6 months. I agree that if the next

by skiinglaketahoe (Jul 24)

Hi Karena
I am inclined to say that the change in your PCR is really insignificant (sorry) and that the levels really are identical. I think that if your next PCR doesn't show any significant drop

by karen (Jul 24)

I guess as the trend is going in the right direction I should accept it but we all want the Holy Grail of 0.1 and it doesn't seem to be going down quick enough! He seems to look at the other counts
Category: Uncategorised

Replies: 5

Last updated: 25 July 2009
Steven D on 22 July 2009

Category: Uncategorised

Replies: 1

Last updated: 23 July 2009

Annual Patient-Carer Seminar
by Barbs (Jul 23)

Well done for the PCR Steven!

I just hope that it's not the weekend Nov. 14th - we've got the first annual CML day here in France then,

all the best to Carol,

Barbara

by Steven D (Jul 22)

Hi All.

I was at the Hammersmith today and was informed that the annual seminar will be in Nottingham in November. More info will follow shortly. Good results today. PCR 0.029

Steven D
Category: Uncategorised

Replies: 1

Last updated: 23 July 2009