Re:Multiple Myeloma-Thanks Dottie, Helen, Ervin, Joe

[Guest guest]

Dottie, Thank you for taking the time to write to me. It is most appreciated.

I'm still going. Your story helped me make the personal choice not to give up.

Helen, Thank you for your reply to my message. I have taken your advice and

contacted Price Pottenger Nutrition Foundation. You helped me get a second

wind, and keep going.

Ervin...Thank you for your e-mail. It truly helped me to make the personal

decision to keep going as a caregiver. I am the only one battling this thing

with my dad. In my heart, I know this can be beaten.

Joe, Thank you for writing me. I have received such wonderful advice from this

group. Because of you, Two days ago I almost hung it up. Battling doctors and

faithless family members alone is difficult. Is anyone else an ARMY OF ONE? The

GP has been dropped, and I'm now getting more proactive in finding a doctor who

will assist in monitoring blood, and anemia, without trying to shove chemo down

our throats. I'm now calling, telling offices what I want...will you do it?...

yes or no. I'll peronally interview the doctor, and then decide to take my dad

in or not. Positive things are happening, but I need to monitor the blood.

There are intense challenges here too.

Regards, Goldenlad

[Guest guest]

i have known the specialist i go to for 20 years & used to run with him

sometimes

during the '80s & ;90s......he told me i had the benigh for of the disorder in

1996

MGUS which only goes on to myeloma in 25% of cases.

it did in oct'04.

he has got me on to bisphosphonates, monitored what i do, added EPO drug to

get haemoglobin Hg up. and i have tried all sorts of things.....because i hated

the

idea of going for the major conventional treatments.

however i found my hand was being forced by december '05 & got into 100 mg

thalidomide jan 1 '06.

you need someone good & a GP that knows his way around conventional and

alternate treatments.....or who will look at stuff....and look at stuff you

bring up.

thalidomide is not really chemo.

chemo is cytoxic and kills the cancer cells and also normal cells.

thal is anti-angieogenic,an imunomodulatory agent.

really if the disease is well loaded.....then you need to get down the number of

these

myeloma cells out of the bone marrow.....this gives you chance to look around

and

check out alternatives.

but going for green tea - going for everything you can look at and try on

www.grouppe.kurosawa - go to blog.....you need to get this thing moving

down,

and if an alternative will do it GREAT....but where,what,and who has done

it!!!!!!

i hope you find a good team to work with - joe

Goldenlad wrote:

> Joe, Thank you for writing me. I have received such wonderful advice from

this group. ...I'm now getting more proactive in finding a doctor who will

assist in monitoring blood, and anemia, without trying to shove chemo down our

throats. I'm now calling, telling offices what I want...will you do it?... yes

or no. I'll peronally interview the doctor, and then decide to take my dad in

or not.

>