Re:Standard of Care

[Guest guest]

My goodness Don, I'd be searching out a new onc. right away. I was dxd in

September 2002 and I go every 3 months for bloodwork. My onc really cares and

will listen to any concerns I may have. As a matter of fact, I have a side

effect that no one else seems to have and when I see him he asks me if " it's "

still as active or more active.

I wish you the best of luck finding a new onc.

Hugs,

Judy P.

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[Guest guest]

Don

I and glivec have a mutual connection to rashes.

All sorts - from shingles, to hives, to welts, to recently flat blood blister

rashes on tops of feet and forearms, another

great one was a water type blister - very tiny dot type thing. And Don as

recently as the last fortnight, about 3 different spots of a circle rash

that I thought may have been ringworms.

Rushed off to the pharmacist who said NO! you have been bitten by a mosquito.

Obviously the mozzie venom

got stuck into me and as maybe the immunity is low, a different reaction.

Bloody hell - if glivec and mozzie bite

does that to me, how was the poor mozzie - absolutely nuked possibly. What is

the same is the skin reaction.

My skin is also dry after these bouts

What is the same is all the bites, blood blister rashes, turn into sores, then

heal. All non itchy otherwise I would be miserable.

So how do I fix these little nasties, I go to the chemist and have two types of

lotions.

Dry Skin

One is a cream type lotion with oatmeal base and moisturises the skin and the

other is a body lotion that I shower with.

Skin sores

I use the old fashioned calamine lotion and just dab the affected areas and wear

long shirts.

Specialist

I see my haem every three months now - !!! makes life easier.

However I leave messages everytime another glivec reaction to go on my file and

have his nurse forward the info to him.

On occassion when things have not been that great, I have made emergency

appointments or asked him to phone me

which he does. I just leave a message - need help or advise or non emergency but

need your comments etc.

He has also given me a management plan in case of emergencies and who to contact

at the treating hospital etc.

(Obviously my file is getting thicker - I asked them to add a section that

states Gliivec Reactions - they just laugh)

My view is that he is my medical guy and you have to be your own health

advocate.

These guys are under the pump I think my guy does not even see the pump on most

occasssions.

However having said that, he cannot help, support or assist if he does not know

what is going on.

If you have an issue contact your specialust - if not getting support then

change your medical team

Glivec and Rashes go to gether like birds on the breeze - they are the bane of

my life. (Not really just annoying)

Keep Well Don

Sue (Aussie)

[Guest guest]

Don,

Wow! I have never posted here before (my wife has once or twice) but I thought

your question needed a quick response.

Sinc e being diagnoses in 2006 I have been treated at Eastern Carolina

University and at s Hopkin's Cancer centers. In both cases there was a

standard frequency for appointments establsihed early on. I was going to ECU

weekly right after being diangosed. Once I transferred to hopkins I was going in

every 6 weeks, then 8 weeks and now I go in every 3 months.

Each visit I have a CBC and FISH completed. They also recently started pulling

a PCR test as well.

I would be very concerned with the frenquency you are seeing your onc. I am by

no means an expert on this stuff, but I definitely think you should be going in

on some sort of a regular basis and having tests pulled.

I recommend you raise your concern with your onc. If she doesn;t agree then I

would consider asking to be referred to someone else.

Troy