Re: Debbie: Is it all Gleevec's fault Sue&Debbie

[Guest guest]

Dear Sue,

 

What great advice for Debbie and all who have been diagnosed with illnesses.

 You have kept a full life and what an inspiration to so many. Before I was

diagnosed I remember the hip pain but did not know what it was.  It is gone now,

but gleevec was sure to cause more pain in other areas.  : ) 

Debbie I hope your husband receives good reports and keep checking this group.

Someone will always have the knowledge to help you or just to make you feel like

you are not alone!

 

God Bless,

Jackie S.

dx 4/14/04

currently HHT trial MDACC

From: Lomsdalen <llomsdalen@...>

Subject: Re: [ ] Debbie: Is it all Gleevec's fault

Date: Saturday, February 28, 2009, 3:02 PM

Debbie,

I am so sorry that you and your husband are going through both of these things

at the same time! 

My Mother was diagnosed over 10 years ago with Hep C.  She contracted it after

given blood transfusions after her Hysterectomy in the 70's.  She went through

interferon shots, and has been in remission ever since and is doing great.

Thinking positive helps me, and I will pray for both of you.

____________ _________ _________ __

From: Debbie Segars <segersdebbie>

groups (DOT) com

Sent: Saturday, February 28, 2009 5:43:07 AM

Subject: RE: [ ] Debbie: Is it all Gleevec's fault

Wow Sue what great advise and inspiration. You all keep telling me this to shall

pass. I will hold on to thar. The diary is a great idea as one day seems to run

into the next right now. Its been less than a month since my dx however it seems

like much longer. My husband and I both find ourselves trying to recall things

and so much has happened that it is difficult. Not only was I dx with CML but a

week before that my husband was dx with Hep C. We are currently waiting for his

results on what strain of the disease he has. He had a blood tranfusion due to

and accident in the late 80's.

[ ] Debbie: Is it all Gleevec's fault

Hi Debbie

Joint, bone ache, bone pain, muscle ache, muscle cramps.

In the first year - many people experience this side effect from glivec

The drug is working - someone stated cells dying produces uric acid - someone

else stated it is gas created from

cells dying. Good oh - but it does hurt.

Normally the ache is the long bones, at times it is not all the bone and you can

put your hand on the spot that is aching.

Perhaps lasts a day - a few days then another bone, another ache etc.

I remember having aches in collar bone, shins, hip joints were a real bone pain

not ache, at one time could not walk

without being hunched over, as the back pain and spinal bone was a doosey. i

remember also having black eyes,

jaw pain, teeth hurt at times, besides the million other things. Remember they

are not with you all the time.

You may have a week here or there, then you will be OK , then another day or

two, then OK, etc and before you know

it a year has passed.

Suggestion

Commence a good working relationship with your medical team.

Your responsibility is your health so become your own advocate - you have

started by joining a support on-line group.

If you are having pain, aches, other side effects, advise your specialist. Also

have a share care plan with your community based doctor and specialist.

The medical team is there to support you, so let them do that. They cannot help

you if they do not know what impacts the drugs are having on you.

Write in a diary. Ask all questions.

Being a lady my advise is also get yourself a good gyno - many women have had

hormone and developed bleeding problems from glivec.

My experience was extreme, whereby I had a bleed-out and emergency operation.

Not many people have that side effect, But many have

problems. Also start documenting any side effects and produce to your

specialist.

I read on one of the responses where someone said when diagnosed and thereafter

" WHY ME? " this is a normal reaction.

I never had this reaction, mine reaction has always been not Why me? but Why

not? and so the next question is " Can CML be managed? "

And it can be.

One of the best suggestions that I can give you is to have a management plan

ready - so that in an emergency everyone knows what to do,

who to phone, where to go.

Debbie, I have a great life, go to work, live on a rural property, have horses,

dogs, cats, family not in that order and CML

I " live with " and not " live it " of CML, even with all the side effects that I

have from glivec and you will too !!

Ask all the questions, many people have vast knowledge of CML and treatments and

are so extremely generous with their

sharing of knowledge. All have helped and supported me on my journey. Remember

you are not alone with CML so ask those

who have travelled the same path the silliest question, the serious question,

the attitude question, the emotional support question

and there will be someone who will get you back on your feet to go forward