Oregon

[Guest guest]

Jenna wrote:

>>I'm new to this list! I am in Portland Oregon.

** Hi Jenna! I live in Salem (but just moved here from Portland, I grew up

there). I have noticed a few people here from Portland. Is there an active

support group there? Should we get one going? I went to the westonaprice

website and there were two contact names, a woman in Lake Oswego and one near

Salem. I emailed the woman near Salem and she was helpful but isn't doing an

actual face-to-face support group. I wouldn't mind meeting once a month or so?

or something like that... Also, maybe we could set up a local email list so we

can exchange local information? Do other areas do this? I am new to all this

and need lots of help!

>>Does anyone know where I may obtain raw milk??

Well, as you may have read in my other post, I just found some raw milk in

Dallas, Or. but that is a bit far for you. I don't know about the Portland

area. I wouldn't mind meeting you, though, and taking you to the farm I go to,

if you wish! Also, maybe email the woman who lives in Lake Oswego?

>>**I noticed New Season's will carry the raw goat milk but not the raw cow's

milk

The natural food store here in Salem also only carries raw goat milk. I don't

understand why they can do this.. since, according to realmilk.com the law in

Oregon basically says you can't sell raw milk retail. How can they sell raw

goat milk then?

Carolyn

thanks

Jenna

---------------------------------

[Guest guest]

Hi , thankyou for the information, it means a lot to me to have guidance

from someone that has been thru their share of battles and takes time out to

help others. Hope you are well and enjoying a win win situation with Oregon

football, yes I have been watching the games and think it is fitting the Ducks

will go to the rose bowl, and if not, the Beavers will certainly enjoy the

limelight. I have become confused lately, my Doctor said  to get these tests,

the brain and bone scan to see if it is spreading, then on Dec 1st, I have next

appt. he said at that time we would have test results from scans and talk over

my large spleen and a treatment plan. During my last transfusion the patient

advocate asked me if the bone marrow results were in , I said I haven't heard

yet,(three weeks) so she called and asked that they call and tell me of the

results, My Doctor told me that they don't know yet, Luekemia that is

undiagnosed yet, trying to get me into OHSU

and that now I know as much as he does.I asked my wbc, he said 47000 and that

when it goes down we are going to increase the dosage more, well this week it

was 22000 on tues the 17th. I wonder if it could go too low, as of Sat. nite I

only took 500 ml instead because hands were swelling up and itching and soles of

feet, I did read that could be caused by too much Hydroxyuria built up in the

body, so today Sun. I took 500ml 3 X's rather than 1000ml 3 X's and think I'll

stay on that untill I see his assistant on Dec 1st, and probobly not take the

scans as  I don't think I can use the additional radiation right now. I believe

I have heard you mention DR. Drucker but did not know he was your doctor, I am

going to put all my energies towards getting to OHSU. SS/DI turned me down last

week said they believe that I could be a Deli clerk in 12 months, I filed an

appeal and now have representation, the nurses at patient care where I get my

Transfusions, 2

units about every nine days can't believe it, but they based their case in Mid

Oct when I was on Gleevec and diagnosed with CML, things have changed and not

for the better,but thanks to people like you ,that give sound advice and

therefore lift spirits of others around you making this world a much better

place, thankyou again, and may you have a nice Bowl season, O   

________________________________

From: hey00nanc <ncogan@...>

Sent: Sun, November 22, 2009 11:23:15 AM

Subject: [ ] Oregon

 

> (PS) I still do not have a diagnosis,other than, it is a luekemia, but

undiagnosed yet, Not Cml, Jak-2 Test Negative, OHSU has not found the type yet,

oncologist says very rare, trying to arrange for me to go to OHSU for a possible

trial. Says there may be some hope there, I am considering trying to see Dr

Drucker my self, as locally I have brain and bone scans scheduled for next week

by local oncologist, Iam considering skipping those and trying to get focused on

diagnosis, as to see if I can get a treatment, specific. Hoping to hear from you

You and C. And  's possible feedback, Iam stilll taking 3000 ml of

Hydrox each day ,Off of gleevec after 6-weeks, Hope all are well and moving

forward, Oregon  

____________ _________ _

Hi ,

I had just been wondering about you and whether you had gotten a correct

diagnosis yet. I would try to get under the care of OHSU if that is possible

(find out if the Oregon Health Plan would pay for you to be seeen there, it

seems that they would). You actually don't even need a referral to make an

appointment to see Dr. Druker but I would try to use your local oncologist to

expedite it and not just go through the scheduler. Also, seeing any of the

leukemia doctors would be fine, they are all excellent and they work as a team.

That is Dr. Mauro and Dr. ?Dinienger. The other 2 doctors are actually

in the clinic more than Dr. Druker and if you got into a particular trial you

might be assinged to one of them anyway. But try first for Dr. Druker.

What is the reason for the brain and bone scans? I am guessing to see if there

is some spread?? Even if you have a rare form of leukemia that they can't name,

I would think that hitting it with some of the standard leukemia chemotherapy

might be beneficial. This would be something more like standard chemotherapy,

like a series of IV treatments. I think that getting to OHSU is a priority for

you....this is the top facility in the state. Also, if you need to stay over in

Portland, ask to speak to the Leukemia Dept's social worker. They can get free

hotel rooms from the American Cancer Society, and many hotels have a shuttle to

OHSU. Keep us posted ....you are one of us, cml or not.

___________

As an aside, did you see the great Duck vs Wildcat game last night? Oregon on

top, 44-41 after 2 over-times, a great come from behind win. Now on Thurs. Dec

7th.....the shootout at Autzen Stadium between the Ducks and the Beavers....the

winner will go to the Rose Bowl. How is that? either way it will be an Oregon

team!!! no USC, no Stanford, no Cal Bears.

my best to you, from Eugene

PS. I think you do know that my doctor is Dr. Druker, since 2-2000

____________ _