RE: - Feeling like Crap (27 & First week on Glivec)

[Guest guest]

Thanks Sue!

From: [mailto: ] On Behalf Of

suehurt28

Sent: Wednesday, November 04, 2009 2:05 PM

Subject: [ ] - Feeling like Crap (27 & First week on Glivec)

Hi

Pain in teeth and Gums - Jaw line

Many people in the first six months have bone ache, muscle pain,and

very deep bone pain.

You can get it on the long bones or at times you can actually feel

areas of the bone - not all the bone where the pain is.

Very painful.

Teeth

I use a product called Denta-med - for dry mouth which I do not have.

Invented for Leukaemia and HIV people - or people with low immunities -

my teeth at present are great.

Have some colouring from glivec -

Have teeth checked every 3 months

I also do not have any mouth ulcers

This product also is great for those

It is a gel - that you use like a toothpaste once per day and use your

normal toothpaste other times.

Be careful of bleeding of the gums - if excessive - contact your CML guy

asap.

Suggestions:

Use heat packs - I used to have a slow cooker on warm, have a few gel

packs in there - so as one cools down - I had another ready for use:

Great - just put a small pillow case or towel around them so you do not

get burnt.

If you read the pamphlet in the glivc box - you will sight a list of

side effects - you will not get them all - you will get some - and if

lucky none at all - but I doubt it.

I am 2 years on glivec - and have only (HERE THIS EVERYONE) have not had

a rash for 3 months - first time - !!! I am the queen of the

glivec rashes.

The important issue:

Have a good work like relationship with your medical team which includes

all who treat you - dentist, eye specialist, General Practioner - local

doctor - and most importantly your CML Specialist.

including your local chemist - the chemist may turn out to be a very

important part of your CML side effect management.

You have to be able to just phone your CML medico and ask questions and

advise of what you are going thru. He or she cannot support if they do

not know.

Emergency

You need to have an emergency plan.

This must be put up somewhere - that everyone that has contact in your

house - has knowledge - like an evacuation plan.

Find out from your CML guy - what are your options if an emergency.

Who to contact

How to contact your CML Specialist

What hospital

How that hospital can contact your specialist

etc

etc

A simple plan may save your life - it has mine at times.

Fatigue

Well - welcome to the CML world - that does improve for most

- your body is healing after all - so take it easy - you also need to

exercise - walking is great and as time goes forward - you will be able

to take up your normal exercise regime - talk to your specialist about

that.

THE MOST IMPORTANT ISSUE FOR YOU

- you can have a fantastic life with CML - I do !!

Keep asking questions

I am still a newby - some of the group have been on differenet

treatments and trials for many years -

Keep Well and warm

Cheers

Sue (Aussie)