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Barbs on 24 December 2010

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Replies: 1

Last updated: 24 December 2010

Merry Christmas!
by Stuart Johnston (Dec 24)

Wishing everybody a super Christmas.xxx

by Barbs (Dec 24)

Just to wish you all a very merry Christmas & a happy & healthy 2011!

Who knows - it may be the year of the CML cure!

XXX
Category: Uncategorised

Replies: 1

Last updated: 24 December 2010
sandy craine on 22 December 2010

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Replies: 2

Last updated: 4 January 2011

video interview with Dr. Rosti
by sandy craine (Jan 4)

Hi Pennie... sorry for the late reply but I have unfortunately had flu, so I have not been doing my usual job.

I am not sure why you could not access the link to Dr. Rosti video ... it

by Pennie (Dec 23)

Hi Sandy I don't seem able to access this video. Is there somewher we have to log on or register to view?

All the best for the holidays to you and the family

Pennie.

by sandy craine (Dec 22)

Another interesting video from ASH: an interview with Dr. Gianantonio Rosti .

http://oncologystat.com/video/ASH_2010/Nilotinib_for_Myeloid_Leukemia.html;jsessionid=
Category: Uncategorised

Replies: 2

Last updated: 4 January 2011
Bill on 15 December 2010

Category: Uncategorised

Replies: 1

Last updated: 16 December 2010

Fathering a Baby on Glivec
by sandy craine (Dec 16)

Dear Bill... thanks for sharing your lovely uplifting news of the birth of your baby daughter. It will give confidence to lots of people who worry about birth defects from taking imatinib. As you

by Bill (Dec 15)

Hello everyone apologies for taking so long to post. I am on Glivec 400mg and was diagnosed with CML a few years ago and my results over the years after being awarded the magic "Zavie Number
Category: Uncategorised

Replies: 1

Last updated: 16 December 2010
ypoulton on 15 December 2010

Category: Uncategorised

Replies: 5

Last updated: 18 December 2010

glevec reduction
by ypoulton (Dec 18)

I am having a few problems with side effects so he suggested it, I have said no for the moment as he has put me on something for the nausea and sickness, I have been on glivec since april

by LizzieD (Dec 17)

Hi Yvonne

It is the first time I have posted anything on this site since I was diagnosed in September 09, although I have watched it regularily.

At first I had lots of side effects from the

by zaviemiller (Dec 16)

Hi Yvonne,

The only way you can be sure that it is OK to reduce your Gleevec to 300 mg is to have your serum level tested. If your serum level was at 1100 ng/ml on 400 mg of Gleevec, then it

by sandy craine (Dec 16)

Dear Yvonne... what is the reason for you to drop the dose? 400mg is the recommended standard. Are you suffering from side effects?

Sandy
Category: Uncategorised

Replies: 5

Last updated: 18 December 2010
Kate on 10 December 2010

Category: Uncategorised

Replies: 2

Last updated: 16 December 2010

Arthritis / leg pain from Glivec / CML?
by Richard42 (Dec 16)

Hi Kate

Sorry to hear how you've struggled initially with Glivec. As Sandy says, most people get cramps of differing levels of severity. In my case, initially they were more or less

by sandy craine (Dec 11)

Dear Kate

this leg ache/cramping effect of imatinib is a common experience and most of us have experienced it. However, the constant leg aches disappear at about 3 months into therapy. In my own

by Kate (Dec 10)

Hi, I am Kate (a 36 year old Brit who now lives in Australia.)

I was diagnosed in September with a very high white cell count and after initial treatment with Hydroxyurea and Allopurinol started
Category: Uncategorised

Replies: 2

Last updated: 16 December 2010
Smahmood on 10 December 2010

Category: Uncategorised

Replies: 8

Last updated: 16 December 2010

Palpitations
by michael (Dec 16)

I am not sure if hes new or not,he spent a lot of time explaining my results and what was happening with my immune system, nothing was to much trouble,but then all the staff are pretty good.

by Smahmood (Dec 15)

Hello Michael

Yes I felt the same when I heard that Dr Ho is leaving. I am going to see Dr Ho on the 29th of this month (probably the last time before he leaves). He is very experienced and

by Smahmood (Dec 15)

Hi Richard,

Thanks for the information. I think the same because changing the medication from dinner to lunch would not hurt. I will try to change my routine from tomorrow and see how it goes

by michael (Dec 15)

Hi Shaz,

I felt a bit stressed when I found out Dr Ho was leaving Kings,hes been a fantastic surport durring my CML journey.But last week met Dr Gandi and quickly remembered that not only
Category: Uncategorised

Replies: 8

Last updated: 16 December 2010
Olivia on 2 December 2010

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Replies: 8

Last updated: 16 December 2010

Increased Glivec cramps
by sandy craine (Dec 16)

Hi Bill... you are so right, you need to love water. I have always mix tap water with either fresh lemon juice or I drink a naturally carbonated water like Badoit or Pelegrino (I like the salty

by Bill (Dec 15)

Hi, I have had the same issues off an on. As Sandy mentioned as well, I also increased the magnesium intake and took up yoga. The cold has something to add to the frequency at least for

by sandy craine (Dec 11)

Dear Olivia,

you will have to try this for some months before you see the benefits... the skin is a very efficient way of getting it into the blood. It also might cause some tingling/stinging

by Olivia (Dec 7)

Thanks Sandy, you always have the answer! I will try the magnesium oil, that's a new one on me.

Olivia
Category: Uncategorised

Replies: 8

Last updated: 16 December 2010
pat preston on 28 November 2010

Category: Uncategorised

Replies: 1

Last updated: 28 November 2010

Part 11 - Wondering what is going on?
by sandy craine (Nov 28)

Dear Pat,

good to hear you have found renewed energy to fight for your best interests. It is because of the many online forums like this one that individuals find the support to help them to go

by pat preston (Nov 28)

Dear Sandy, Pennie, Zavie and Lisad123, Your kind remarks have both reassured me and revitalised my will to fight on and I am much better informed for your advice. I am
Category: Uncategorised

Replies: 1

Last updated: 28 November 2010
Hannah Bracegirdle on 27 November 2010

Category: Uncategorised

Replies: 1

Last updated: 28 November 2010

Petechiae
by jackieb38 (Nov 28)

Hi,

I occasionally get blood blisters in my mouth (is that the same thing?) and I was told it was a side effect of the Glivec. I bought a mouth wash which seems to help.

Hope that helps,

by Hannah Bracegirdle (Nov 27)

Hi guys hope alls ok with everyone,

I have just noticed blood spots in my mouth and remembered of some literature from when i first found out about cml that this could be a sign of
Category: Uncategorised

Replies: 1

Last updated: 28 November 2010
michael on 25 November 2010

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Replies: 6

Last updated: 24 December 2010

100 days post transplant
by michael (Dec 24)

Just found out that my 100 day bone marrow shows no signs of CML in marrow or blood,best christmas present ever.

by Peter Miles (Dec 11)

Hi Sandy

Already booked for Liverpool - look forward to meeting you

Peter X

by sandy craine (Dec 9)

hi Peter; good to hear you have celebrated 10 years post sct--- I qm behind you but not by far-- maybe we will finally meet up in L/pool in Jan at the UK patient seminar

best wishes

Sandy

by Peter Miles (Dec 8)

Hi Michael

Congratulations! I've just completed 10 years post transplant (Royal Liverpool University Hospital - brother donor). Went through much the same as you - stay positive - keep
Category: Uncategorised

Replies: 6

Last updated: 24 December 2010
Ali Loram on 25 November 2010

Category: Uncategorised

Replies: 1

Last updated: 25 November 2010

Prof Apperly
by sandy craine (Nov 25)

Dear Ali, thanks for the links to this article. I have put the full text on the home page for those who do not have access to the Oncologystat site.

Best... Sandy

by Ali Loram (Nov 25)

Here are two very interesting articles about cml treatment by Prof Apperly:

Dr. Jane Apperley: Part I: CML—The Changing Landscape of Front-line Therapy
Category: Uncategorised

Replies: 1

Last updated: 25 November 2010
Paul Miller on 24 November 2010

Category: Uncategorised

Replies: 2

Last updated: 30 November 2010

'An Evening with the CML experts'
by Dennis (Nov 30)

Thanks for that Paul and Sandy.

I found it interesting and at the the same time encouraging. Encouraging in the way Dr Michael Mauro talks about the successes of Glivec, Dasatinib

by sandy craine (Nov 25)

Thanks Paul.. I have added this to the video page

Sandy

by Paul Miller (Nov 24)

I've come across this video on the relevent page of The National CML Society Apologies if it's been put up before now.

Dr Michael Mauro (Oregon Health & Science University)
Category: Uncategorised

Replies: 2

Last updated: 30 November 2010
pat preston on 24 November 2010

Category: Uncategorised

Replies: 4

Last updated: 25 November 2010

Wondering what is going on?
by sandy craine (Nov 25)

Dear Pat, I would not be concerned with the differences in your PCR tests as the differences- as Zavie has already pointed out- are not at all significant. The only time you need to be concerned

by Pennie (Nov 24)

Hi Patty Good to hear from you - a CML veteran like me. I am now on Nilotinib, at a low dose 400mg one day 200mg the next. I have managed a 0.000 ONCE but

by zaviemiller (Nov 24)

Hi Patty,

The difference between 0.006 and 0.003 is not significant. To detect a trend you need 3 consecutive results. My suggestion would be not to wait 5 months to test again but get another

by lisad123 (Nov 24)

hi

Yes my husband recently started on dasatinib, so is possible. Our doctor here said although the test is very good there s always a chance they have reproduced the cells too mnay times giving
Category: Uncategorised

Replies: 4

Last updated: 25 November 2010
chrissbb on 23 November 2010

Category: Uncategorised

Replies: 3

Last updated: 16 December 2010

Swolen neck glands
by spinning jeanie (Dec 16)

i've been taking glivic since i was diagnosed in february, i've always had a change in the amount of swelling in my neck and face. i believe its just due to water retention, as this is

by michael (Nov 24)

You can ask your GP if you can have a biopsy,This is done using a fine needle and using ultra sound to position the needle into the enlarged node,Its pretty pain free.

I had this done last month

by liz (Nov 24)

Hi Chris,

Yes I also get swelling around my glands and neck. I don't get any discomfort tho, I have always presumed it was just water retention due to being on Glivec. Mine

by chrissbb (Nov 23)

Hi,

I've been on glivec nearly 2 years now and i have had various side effects from it. All things considered i was still MMR at my last clinic, but for the last few months i have had
Category: Uncategorised

Replies: 3

Last updated: 16 December 2010
lloyd152 on 18 November 2010

Category: Uncategorised

Replies: 6

Last updated: 20 November 2010

Flu Jabs
by sandy craine (Nov 20)

In the 12 years since my diagnosis I have never had a vaccination against Flu. I did have a pneumovax after my transplant but that was recommended only because I my spleen was removed just after

by lloyd152 (Nov 19)

Thanks for all your advice. I am only 23 so wouldn't usually be offered the jab! I am back living at home and my parents were wondering if it would help for them to have the jab (

by Steven Davies (Nov 19)

I am treated at Hammersmith and have been told by my consultants to continue with the flu jab which I have been doing since DX 6 years ago. I have also been told to have the Pneumonia jab

by Olivia (Nov 19)

I have had the jabs this year and last (which was fairly soon after diagnosis) and have suffered no side effects. I am on imatinib, and also am over 65 so I would have been offered the jab
Category: Uncategorised

Replies: 6

Last updated: 20 November 2010
Paul Miller on 17 November 2010

Category: Uncategorised

Replies: 1

Last updated: 17 November 2010

New to this forum
by sandy craine (Nov 17)

Dear Paul.... welcome to this forum and thank you for sharing your story and experiences since diagnosis. It is good to hear that your clinician is obviously aware of the current guidelines

by Paul Miller (Nov 17)

Hi,

I've lurked around your site for quite some time. I was Dx with CML in May 2009 with a wbc count of 321,000. I went on to Glivec / Imatinib 400mg after a few weeks on Hydroxyurea
Category: Uncategorised

Replies: 1

Last updated: 17 November 2010
Ali Loram on 16 November 2010

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Replies: 1

Last updated: 16 November 2010

Funding approved
by sandy craine (Nov 16)

Dear Ali,

this is really good news. I am very happy that you have been able to access bosutinib, a new TKI (originally developed by Wyeth - now owned by Pfizer)

You must be very relieved

by Ali Loram (Nov 16)

I have just had a call from The Hammersmith Hospital to say that they have got approval for me for Bosutinib! As you may recall I have been intolerant to both Nilotinib & Glivec & am
Category: Uncategorised

Replies: 1

Last updated: 16 November 2010
Smahmood on 12 November 2010

Category: Uncategorised

Replies: 4

Last updated: 15 November 2010

Cold/Flu - Help!
by PhilB (Nov 15)

Hi Shaz,

Whilst there's not a full consensus on this, many people try to avoid too much paracetemol whilst on G as being hard on the liver (US guidelines are no more than

by Smahmood (Nov 13)

Thanks for the information. Your help is much appreciated.

Shaz

by Stuart Johnston (Nov 12)

Hi Shaz I have been on glivec since may 2009. Regarding colds and flu I am just getting over one now it has been 6 weeks since it started and progressed into a chest Infection. I ended up going to

by jackieb38 (Nov 12)

Hi Shaz,

I was told if my temp goes above 37.5 or if it lasts for more than a few days without getting better then I should ring the hospital for advice but if your in any doubt ring them anyway
Category: Uncategorised

Replies: 4

Last updated: 15 November 2010
clive walpole on 11 November 2010

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Replies: 4

Last updated: 21 November 2010

PCR
by ruddoug09 (Nov 21)

Congratulations Clive, you are at the point I hope to get to in the next 12 months or so after my diagnosis last month.

Enjoy the celebrations!!

by zaviemiller (Nov 18)

YAHOOO!!! YIPPEEE!!!

Number 1367 on the Zero Club

Zavie

Cliff, please write me at zmiller@sympatico.ca. I have some questions for you. Thanks

by clive walpole (Nov 11)

Thanks Sandy, very little in the way of side effects, a bit of bone ache now and again.

Thank you for such a wonderful and supportive site

Clive

by sandy craine (Nov 11)

Dear Clive... good news. I am sure it is a relief for you and your family to know that you are responding well to nilotinib. Do you have any difficulties with side effects?

many congratulations
Category: Uncategorised

Replies: 4

Last updated: 21 November 2010
jackieb38 on 7 November 2010

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Replies: 2

Last updated: 7 November 2010

Blood blisters-does anyone else get these as a side effect of Glivec?
by C Melling (Nov 7)

I have been taking Glivec for 5 years and still suffer with blood blisters, particularly if I eat crispy food. This started a couple of months after taking Glivec. I was

by C Melling (Nov 7)

Yes. This happened soon after I started Glivec and continues. I have been on Glivec for 5 years and try not to eat crispy food, as I believe that this causes the problem. I

by jackieb38 (Nov 7)

Hi,

I have recently started getting blood blisters in my mouth quite regular, especially after eating. Does anyone else get these as a side effect of Glivec and what do you use for it?

I'
Category: Uncategorised

Replies: 2

Last updated: 7 November 2010