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Bill on 1 July 2007

Category: Uncategorised

Replies: 5

Last updated: 5 July 2007

leptomycin B
by fehr (Jul 5)

Interesting. My latest blood test showed raised urea and creatinine. However, I am also on Naproxen, which, I understand, can also cause this. I don't drink much and hate neat water. Time

by Bill (Jul 3)

Hi Sandy and Elizabeth,

Thank you for the update on this from the German conference. I have upped the water intake (it's amazing intitially how hard this was to do) but now it goes Ok. I have

by sandy craine (Jul 3)

i remember some excitement surounding this some years ago. apparently it kills cml cells very efficiently... in the test tube.... but the problem was possible unacceptable toxicity in humans......

by Bill (Jul 2)

Hi Elizabeth and Folks
Have a look at this:
http://bloodjournal.hematologylibrary.org/cgi/content/full/107/4/1591
Category: Uncategorised

Replies: 5

Last updated: 5 July 2007
carmeplas on 1 July 2007

Category: Uncategorised

Replies: 10

Last updated: 5 July 2007

Bone pain
by Andrew A (Jul 5)

Elizabeth,
SPIRIT is going fine, a bit of a roller coaster at the begining of the year as my whole system settled to the dual medication. I tend to fluctuate into Grade I bordering Grade II

by Elizabeth Rees (Jul 5)

Seems like the potassium in your banana helps. You could try also a good calcium/magnesium supplement.

You could try your multivit every day. Again people react differently to various methods

by fehr (Jul 5)

Hi Trish,
I have been on Glivec for approaching three months. I found that 30/600 co-codamol (Solpadol) worked well with leg pains. I also had a DVT, have bursitis and a hernia, all on the same

by suzzie (Jul 5)

For anyone suffering with bone pain. I had it real bad in the beginning. It would go into my groin area. It still comes and goes, but its not that bad anymore. I would get spasms in my feet that
Category: Uncategorised

Replies: 10

Last updated: 5 July 2007
RACHEL HALSALL on 29 June 2007

Category: Uncategorised

Replies: 3

Last updated: 6 July 2007

NILOTINIB
by zaviemiller (Jul 6)

Hi Rachel,
Could you please contact me. I have a couple of questions.
Thanks,
Zavie
Zavie Miller (age 69)

Ottawa, Canada, dxd AUG/99

INF OCT/99 to FEB/00, CHF

Gleevec since MAR/27/

by RACHEL HALSALL (Jul 4)

Thank you Elizabeth, will keep you posted. Sorry for delay, not online yet at home so have to use parents computer on a weekly basis. RACHEL

by Elizabeth Rees (Jul 1)

Hi Rachel

This is a pretty good drug. Just back from a meeting in Germany and Tasigna looks to be an amazing drug which will work on Dasatinib and Imatinib resistant patients. The only

by RACHEL HALSALL (Jun 29)

Hi everyone,

Gary has been on 400mg Glivec since September 2004. He quickly reached CCR but then in October 2006 he increased to 600mg as he had some resistance. As his PCR is not where the
Category: Uncategorised

Replies: 3

Last updated: 6 July 2007
ypoulton on 28 June 2007

Category: Uncategorised

Replies: 2

Last updated: 28 June 2007

PCR
by Elizabeth Rees (Jun 28)

Nice to get some good news. Wishing you many many more days like this.

Elizabeth x

by sandy craine (Jun 28)

hi yvonne,

good to hear your really great news. wishing you many more great 'good feeling' days.

sandy C ;o)

by ypoulton (Jun 28)

Just got my latest results from HH it took 3 mins from my email to the reply way to go D Marin. the result was worth getting it has remained at zero, I feel I must be cured, what a great day. Hope
Category: Uncategorised

Replies: 2

Last updated: 28 June 2007
CHRISTINE MURPHY on 27 June 2007

Category: Uncategorised

Replies: 1

Last updated: 28 June 2007

nasty red rash update
by kestrel (Jun 28)

Hi Christine,

So glad to hear things are improving for Brian now.

Keep on keeping on!

Love, kestrel

by CHRISTINE MURPHY (Jun 27)

Just an update on Brian's progress. His rash became extremely bad, swollen red blistering itchy skin all over his body,after persevering with anti histamines etc. Back to doctor, taken off anti
Category: Uncategorised

Replies: 1

Last updated: 28 June 2007
Moira on 27 June 2007

Category: Uncategorised

Replies: 6

Last updated: 28 June 2007

Omeprazole
by Rio (Jun 28)

Hi everyone i have been taking Omeprazole on and off because of stomach cramps and now I have stoped taking it and i only get them every so often. :]
Rio (13 yrs old)

by Moira (Jun 28)

Thanks for the updates. Glad to hear (don't know if that's appropriate) that others are on the tablets and coping well.
Much appreciated

by (Jun 28)

Hi Peter
Lovely to hear from you!
I will see you at the Royal 8th August.
My Mum is really going through it at the moment - she is having her 7th chemo today - but is really positive and in fighting

by Peter Miles (Jun 27)

Hi Moira

I've been on omeprazole 20mg per day(losec)for the last (say) 12 years and Glivec 600mg per day for the last 6 years. No problems with taking them together - still get cramps though!
Category: Uncategorised

Replies: 6

Last updated: 28 June 2007
Elizabeth Rees on 26 June 2007

Category: Uncategorised

Replies: 1

Last updated: 28 June 2007

Scared lad - reply from post below
by Jayne (Jun 28)

Hi there, I just wanted to repeat what Elizabeth has already said.
Please dont feel that you are alone in fighting this, there are many people who understand what your going through.
My Son was 15

by Elizabeth Rees (Jun 26)

Hi

I want to try and reassure you here. It seems that Andrew from the TV programme died of a RARE disorder which was not picked up from the hospital. See Paul's post. It is very very
Category: Uncategorised

Replies: 1

Last updated: 28 June 2007
Parmjit on 25 June 2007

Category: Uncategorised

Replies: 3

Last updated: 26 June 2007

Message for Milt
by sandy craine (Jun 26)

hi,

all those with compromised immune systems should avoid contact with chickenpox, even if you have had it already. the virus is close to if not identical to that which causes shingles.

by cmlblogger (Jun 26)

on the subject of shingles/chickenpox, should Someone with CMLavoid children with ChickenPox, evem if they have had it themsleves as a child?
there is a bout going round my little boys creche/

by Elizabeth Rees (Jun 25)

Hi Milt

Sorry to hear about your shingles. This happened to me also twice but thankfully no more for about 18 months now. The IV should clear it up pretty quick. Been following your fame

by Parmjit (Jun 25)

Milt
I am a regular subscriber to your updates and sorry to learn of your recent hospitalisation due to Shingles. Have tried to access your Guestbook but to no avail.
Just like to send you our very
Category: Uncategorised

Replies: 3

Last updated: 26 June 2007
fehr on 24 June 2007

Category: Uncategorised

Replies: 2

Last updated: 25 June 2007

Taking Glivec in two halves
by fehr (Jun 25)

Hi Zavie,
Thanks for the info. I sort of guessed that, but the comments of my consultant prompted me to ask.
John.

by zaviemiller (Jun 24)

Hi Fehr,
The 400 mg tablets are scored, so they are intended to be split in two. Gleevec has a long half life which allows it to be taken once a day. Taking half the dose twice a day is just fine.
I

by fehr (Jun 24)

I started taking Glivec 400mg daily over two months ago. I am sure I read somewhere that it could be taken in two halves at different times of day to reduce side effects.
I started splitting the
Category: Uncategorised

Replies: 2

Last updated: 25 June 2007
Patricia Ormrod on 23 June 2007

Category: Uncategorised

Replies: 12

Last updated: 29 June 2007

Muscle/Bone Pain
by Patricia Ormrod (Jun 29)

Hi Rio,

Jack has been on Glivac for 8 weeks today.The pain has been present for the last 3 weeks. It's as if the level of Glivec has built up in his body. Could you hazard a guess when it

by Rio (Jun 28)

Hello Trish im Rio and im nearly 14 yrs old. I was diagnosed last August 2006 and iv been on glivec for 10 months. I used to get a lot of achs and pains but i used Paracetamol, Ibuprofen and Codeine

by kestrel (Jun 28)

Hi,

Rio has a bone marrow test every 3 months. It is a little frustrating waiting for the results as they take about 3 to 4 weeks to come back. We are actually going for results this afternoon

by Elizabeth Rees (Jun 27)

Hi Trish

When first diagnosed and starting Glivec I would expect 3 monthly bone marrows until Jack reaches complete cytogenetic remission ie 0 PH+ after that it depends on centres but PCRs are
Category: Uncategorised

Replies: 12

Last updated: 29 June 2007
Bill on 20 June 2007

Category: Uncategorised

Replies: 3

Last updated: 21 June 2007

High Creatine Level
by sandy craine (Jun 21)

hi Bil,

maybe you heard LFT which is short for liver function tests. these protiens can be affected by Glivec. i have copeid the information from our FAQ/glossary page. you might like to take

by Bill (Jun 20)

Hi Elizabeth, my next appointment is in 2 weeks..do you think they should look at it sooner?
Thanks a lot for your quick response...My initial response to Glivec has been doing so well..this was

by Elizabeth Rees (Jun 20)

Hello Bill

Creatine levels are related to kidney function. Possibly you are not drinking enough water. Try to increase your water intake and see if next time it makes a difference. I am

by Bill (Jun 20)

Hello,
I have been back from the doctor 8 weeks now with diagnosed CML! All all standard blood counts are fine (the normal slight flucuating)
But I have a very high creatine level 276 (they
Category: Uncategorised

Replies: 3

Last updated: 21 June 2007
skipd on 19 June 2007

Category: Uncategorised

Replies: 1

Last updated: 21 June 2007

LOW ANC
by sandy craine (Jun 21)

hi Skip,

thankyou for your post, i am sure your story will inspire many people. you have survived for such a long time and have such a wonderful attitude.

i really like your poetry page

by skipd (Jun 19)

For those with low ANC here is a site that more or less explains them.

http://lymphoma.about.com/od/issuesduringtreatment/p/bloodcounts.htm
This is a quote from that web page "However, low
Category: Uncategorised

Replies: 1

Last updated: 21 June 2007
Elizabeth Rees on 19 June 2007

Category: Uncategorised

Replies: 2

Last updated: 26 June 2007

Travel Insurance
by Elizabeth Rees (Jun 26)

Thanks Steven. Have included this under our Travel Insurance section.

Ex

by Steven D (Jun 24)

There is an article in today's Mail on Sunday regarding insurance for people with preexisting conditions.
Insure Cancer insurance is individually written for the person so this might be helpful.

by Elizabeth Rees (Jun 19)

I have added a new company under the FAQs Travel Insurance - Travelbility - they pride themselves on offering competitive insurance to disabled/pre existing medical conditions etc... If anyone uses
Category: Uncategorised

Replies: 2

Last updated: 26 June 2007
andrew on 18 June 2007

Category: Uncategorised

Replies: 1

Last updated: 21 June 2007

Complete Disappearance of Key Gleevec Resistance Mutation in CML Patient
by sandy craine (Jun 21)

hi andy,

thanks for posting this article. it is very very interesting.

Ceflatonin or Homoharrintonine is a natural plant used by TCM practitioners. so this is yet another case of the

by andrew (Jun 18)

Hi All
Encouraging report on the pesky T315I mutation.
Cheers

Andy (Aust)
Complete Disappearance of Key Gleevec Resistance Mutation in CML Patient
ChemGenex Announces Publication Confirming
Category: Uncategorised

Replies: 1

Last updated: 21 June 2007
Lin on 15 June 2007

Category: Uncategorised

Replies: 4

Last updated: 25 June 2007

Not responding to Glivec
by Elle (Jun 25)

Hi Lin
Yes i did have side effects with Glivec. Joint pain , nausea , bowel problems and cramp and water retention , eyes and ankles. When my dosage was increased to 800mgs in Oct 2006 i decided to

by Lin (Jun 22)

Thanks for your reply Elaine. My consultant is writing to my health Board for permission to fund Dasatinib for me. Although it has been licensed by NICE the Welsh Assembly have not released funding

by Elle (Jun 20)

Hi Lin
I was dx Feb 2005. Was on Glivec since then. Increased to 800mgs Oct 2006. I am now taking Dasatinib as of last Fri. Is this an option for you ?
Zavie is right about fatigue. I would say it

by zaviemiller (Jun 15)

Hi Lin,
Fatigue is one of the side effects of Glivec and is an indication that Glivec is working. In my personal case, the fatigue lasted 9 months before it went away. You may take you a little
Category: Uncategorised

Replies: 4

Last updated: 25 June 2007
arrowsc on 12 June 2007

Category: Uncategorised

Replies: 3

Last updated: 14 June 2007

Possible cause and what to do next
by arrowsc (Jun 14)

Thanks for your comments guys, I think I was looking at it with my ' revenge' glasses on as this company made me redundant at the end of last year after 9 years employment and it is still very raw

by Dennis (Jun 13)

"I know we need to be able to blame someone, but I honestly think that you'd be wasting a lot of time & energy trying to prove that Benzene in your workplace was the cause."
Barbs, that isn't

by Barbs (Jun 13)

Dear Craig,

I'm sure we all wonder why we've got CML, I'm sure I've got it because I've got a field straight in front of my house & the farmer treats it with pesticides etc. a couple of

by arrowsc (Jun 12)

Hi all, hope everyone is doing ok,
I read an article today from a reporter from my local paper. The reporter has leukaemia ( I do not know what type )and writes articles on her progress etc. She
Category: Uncategorised

Replies: 3

Last updated: 14 June 2007
cmlblogger on 12 June 2007

Category: Uncategorised

Replies: 16

Last updated: 5 July 2007

Children Fighting Cancer Programme on the BBC
by Melanie (Jul 5)

I caught this programme for the first time this week and was incredibly touched by it. My heart especially went out to Jack, probably because he reminded me so much of my nephew, what a brave young

by scarred lad (Jun 26)

I watched bbc program and its really got 2 me as i just dont wanna go the way andrew did. Im shocked how fast he died and very upset about it but dont tell no one ok. Charoltte wos so brave too.

by Craig (Jun 22)

Hi,
I stumbled upon this site while trying to find out more about this disease and it's treatments after having watched the 2 episodes of Children Fighting Cancer that have been shown so far.
I am

by Parmjit (Jun 21)

Paul
I was pleased that you contributed to this discussion. The more informative experiences that can be shared on support sites such as this is, I believe, a step in the right direction. I have
Category: Uncategorised

Replies: 16

Last updated: 5 July 2007
Bill on 13 June 2007

Category: Uncategorised

Replies: 3

Last updated: 18 June 2007

Swollen Lymph Glands
by sandy craine (Jun 18)

hi Bil,

i have not heard of kindney stones being a common side effect of glivec. i would suggest you up your intake of water to help support your kidney function. hope you are not suffering

by Bill (Jun 17)

Hi Sandy,

Thanks...I took the advice saw the doctor and they think I am having kidney stones. They give me about every test possible (including heart) and my spleen, liver, pancreas etc are

by sandy craine (Jun 15)

hi Bil,

yes, given that you have pain/discomfort in your left side of your abdomen then i would advise you check this with your clinic doctor. you have only been diagnosed for al short time

by Bill (Jun 13)

Hi,
I have had several small swollen lymph glands in my neck and above my collar bone and a bit of odd feeling in my left side/abdomen I wondered if these swellings may just be standard part of the
Category: Uncategorised

Replies: 3

Last updated: 18 June 2007
leslie chambers on 10 June 2007

Category: Uncategorised

Replies: 17

Last updated: 14 May 2013

Dentistry
by JeffMowatt (May 14)

I've had extractions and implants since being treated for CML, including a sinus lift. My NHS dentist wanted a letter from the haemotologist before an extraction.
I've also had corrective surgery to

by leslie chambers (Aug 20)

That pesky tooth is out at last, it came out in three peices, and was stubborn to the last.It was just before noon and all over by 12.01 I wanted to keep it,for some strange,perverted reason, but

by leslie chambers (Aug 2)

Sorry to hear about Rios teeth playing up,I hope it soon passes,all pain is bad,but earache and tooth ache are the two that seem to cut to the very soul. He has my sympathy please pass on my best

by kestrel (Jul 27)

Sure will do!

Been following this as Rio's teeth have been playing up since diagnosis - Dentist seemed to think it was Glivec causing the problems, not cml. As if there aren't enough things to
Category: Uncategorised

Replies: 17

Last updated: 14 May 2013
Janet on 10 June 2007

Category: Uncategorised

Replies: 3

Last updated: 12 June 2007

PCR tests
by Janet (Jun 12)

Hi Paul
Yes I am being treated at Llandough, I've just been there this morning. They are now doing quantitative PCRs, via the labs at the University Hospital of Wales.
I am now 8 months post dx and

by Paul Cooke (Jun 12)

Hi Janet,
Forgot to mention in last posting, there's a very good explanation of the pcr test in the FAQs /Glossary section of this site. It's been written by Anjana who as far as I know is a

by Paul Cooke (Jun 12)

Hi Janet,
If I remember correctly, are you attending LLandough?
If so, I would have thought the pcr was done at UHW?
Up until fairly recently they only did qualitative pcr there, and not the

by Janet (Jun 10)

Does anyone know how many cells are looked at in a PCR test? And is it the same for all centres in the UK? What I'm really getting at is whether big centres like Hammersmith have better labs, and
Category: Uncategorised

Replies: 3

Last updated: 12 June 2007