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demagruder on 5 July 2007

Category: Reproductive health

Replies: 15

Last updated: 26 July 2015

CML during and after pregnancy
by demagruder (Jul 26)

Hello all, it has been quite a while since I originally posted my story. I never got back on here after posting it, but I now see a few people have commented since I told my story in 2007. Just 3

by sandy craine (Jun 19)

Hi,

I hope I can give you some encouragement. The known effects on the foetus from imatinib

(there is less data on the new TKIs but it is assumed that they carry the same level of risk)

by mgrattan (Jun 18)

Hi there, I have CML and was diagnosed in June of 2003 at the age of 14. I have been taking Gleevec/Imatinib since the day I was diagnosed. I am now 26 and thinking of my future and would like to

by francineb (Nov 21)

I am so happy that you had a success with both pregnancies. I have been diagnosed May 2006 with CML. I terminated a pregnancy in 2010 because I was on dasatinib and the Onc doctor did not recommend
Category: Reproductive health

Replies: 15

Last updated: 26 July 2015
fehr on 5 July 2007

Category: Uncategorised

Replies: 4

Last updated: 8 July 2007

Liquid intake - plain water
by fehr (Jul 8)

Thanks folks.

Point taken that plain water is best, although I guess when the water hits the stomach, it mixes with everything else in there anyway. Don't drink coffee and tea only if it's

by wkeeping (Jul 7)

John,
Plenty of liquid is definitely desirable. Water is best as obviously it has no toxins or anything to adversely affect liver, etc. However, if you really cannot get accustomed to that, I

by sandy craine (Jul 5)

hi Bil and John,

i do agree that it is quite hard to get into the habit of drinking plain water...... as opposed to all other liguids like juice tea coffee etc.

BUT it can be done... as

by Bill (Jul 5)

Hi John,
From experience I can tell you no matter how hard it is...drink the water...

I started off drinking water and found it AWFUL, in fact the high water consumption

made me nauseous
Category: Uncategorised

Replies: 4

Last updated: 8 July 2007
Bill on 5 July 2007

Category: Uncategorised

Replies: 5

Last updated: 9 July 2007

Cytotoxic?
by Bill (Jul 9)

Hi Rob,
Sorry it it took me so long to get back to your message, I missed it on the last log ins.
I got my insurance through the Post Office. It was really easy to do, I called their 0800 number

by sandy craine (Jul 6)

no, glivec is not considered to be a cytotoxic drug.

sandy C ;o)

by cmlblogger (Jul 6)

I am struggling to get insurance, probably due to holiday planned to the USA :(
rob - http://cmlblog.spaces.live.com

by carmeplas (Jul 5)

Hi all,

well Chemotherapy is refer to any chemical drug you use for treat cancer. From this definition, yes, Gleevec is chemotherapy.

The most important point of Gleevec, is that it was
Category: Uncategorised

Replies: 5

Last updated: 9 July 2007
carmeplas on 5 July 2007

Category: Uncategorised

Replies: 4

Last updated: 5 July 2007

Information
by Andrew A (Jul 5)

Hello Carmen,
I can relate to your dilemma, when I was first diagnosed, I done the typical bloke thing after being bombarded by all this advice and soldiered on, after all I was not feeling “unwell

by Bill (Jul 5)

Hello Carmen,
Side effects will vary from person to person, I have some slight fluid retention around the eyes and have had some pigmentation changes, but neither of these has been really

by Paul Cooke (Jul 5)

Hi Carmen,
I see from your earlier posts that it's your husband who has cml.

I am in a similar position in that it's my wife who has cml - diagnosed in September 2003, and is doing quite well

by Elizabeth Rees (Jul 5)

Hi Carmen

Fluid retention is a common effect of Glivec and if severe can be alleviated with a diuretic but your consultant will advise. Glivec also tends to affect the haemoglobin levels but
Category: Uncategorised

Replies: 4

Last updated: 5 July 2007
suzzie on 5 July 2007

Category: Uncategorised

Replies: 3

Last updated: 18 August 2007

low platelet counts
by skipd (Aug 18)

Hi Suzzie

Suzzie if your Hem Doc does not worry nor should you, Seriously I mean I have very low platelets, (118 would be wonderful if I could reach that level) My doc does not take me off

by suzzie (Jul 11)

Hi Elizabeth:

Thank You for your information. You put my mind at ease. It was just that I did not have any reduction in Platelets until now.

That would be since 1998, and then on

by Elizabeth Rees (Jul 5)

Hi Suzzie

You are one of the long standing Glivec patients. I am not too sure when you say your PCR is at log 5 what you mean. Is it 5.0 or 0.5 - hope it is the latter. Have you had a 5 log

by suzzie (Jul 5)

I wanted to know if anyone is having or has had a problem with low platelet count. Mine is dropping steadily, but my Oncologist has not said anything yet.
My recent PCR is a log 5

I do not
Category: Uncategorised

Replies: 3

Last updated: 18 August 2007
Paul Cooke on 4 July 2007

Category: Uncategorised

Replies: 5

Last updated: 8 July 2007

pcr testing
by Diana Green (Jul 8)

Diana G
Hi, Janet,
May I suggest that when those blood doctors pool (pun intended) their resources, they become a Coagulation of Haematologists?
Regards,
Diana

by zaviemiller (Jul 6)

Hi Paul,
Using the same blood draw or bone marrow draw I have the qualitative PCR come back as negative and the quantitative PCR as a 3 log reduction
This is pretty common.
Zavie
Zavie Miller (age

by Janet (Jul 4)

Hi Paul
It is a coincidence that you are enquiring about PCR testing since I also had some questions following my recent appointment at Llandough - I would be interested to know if Anne's experience

by mariansy (Jul 4)

On peripheral blood mine are suppose to be done every 3 months, but one got lost and one failed, so not an even run. Also they actually fall every 4 months - for example I had a BMB beginning of
Category: Uncategorised

Replies: 5

Last updated: 8 July 2007
carmeplas on 3 July 2007

Category: Uncategorised

Replies: 3

Last updated: 16 July 2007

echinacea
by valandi (Jul 16)

Anybody read anything about acai berries? I read an article about them in the weekend gloosy magazines as the next super food and was wondering if they were ok for people with CML?
My wife Val was

by carmeplas (Jul 3)

Hi Bil,
that's great. Actually I found that both places (Uk and US) are really informative, specially for those of us that have recently enter on this CML's world

We got the diagnostic for CML

by Bill (Jul 3)

Hello Carmen,

I post at this site mostly as it is UK based as am I.
Memorial Slone Kettering Cancer Center has a great website that you

can refer to. St. John's Wort is known to be

by carmeplas (Jul 3)

Hi all,
Echinacea is an herb native to prairie habitats in the United States. This herb is sometimes used as a natural antibiotic and immune system stimulator, helping to build resistance to colds,
Category: Uncategorised

Replies: 3

Last updated: 16 July 2007
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