Re: Return to Camp Baughman

February 11, 2006

Rose,

It's so wonderful to hear there are still kind generous people in the

world. I'm happy to hear that.

Do you have Diabetes? Just wondering, if the feet could have two

things going on with the neuropathy?

Your in my prayers,

Marla

Well, I went back to see Dr. Bob Thursday.

(Elodia, I forgot all about trying to stop & see you until we were

almost back to . I'm sorry.)

The friends who drove me down insisted on driving

their van, so it was more comfortable than taking my car. Plus, they

wouldn't let me pay for any gas! What angels. It's about 5 hours

round-trip. They even brought all kinds of snacks & sandwiches.

Anyway, the visit was productive in that it's

helped me make a decision about the next move. You might remember

that we were considering Cytoxan, or Remicade in the unlikely case that

Medicare approved it. So I wrote down the 4 worst symptoms for me:

neuropathic pain in feet, fatigue, muscle weakness & memory &

mental problems. I asked him what were the odds that Cytoxan would

help them. He said that in his experience the fatigue & muscle

weakness would not be helped at all, the pain maybe a little. The

likely improvement would be in memory, but possibly not enough to get

me back to work. Then he said that we should make sure the disease was

still active, as my symptoms could be from scar tissue, that is, damage

already done. In that case, the Cytoxan wouldn't do any good. I don't

want to take Cytoxan, with all its risks, if there is no active

disease. One option he suggested was to go off the MTX & see if my

symptoms got worse (would take a couple of months). If so, then he

would assume the sarc was active & encourage the Cytoxan or at

least resuming the MTX.

I think I'm going to stop the MTX (after discussing

it all with Larry my local neuro on Monday) & see what happens. If

I get worse, or develop new symptoms, then I'll take the Cytoxan. He

also suggested resuming the MTX since the Cytoxan can take 6-12 months

to kick in. But then after 2 years, the risk of bladder cancer goes

up. By then, I guess I could go for the Remicade, or maybe there will

be another treatment by then.

Last night & today I have been kind of

depressed, thinking that there is a good chance that this (my current

condition) is as good as it's gonna get. And when I can't take the MTX

or the Cytoxan, and when I develop a reaction to the Remicade or it's

not working anymore, I'll just have to sit back & wait for Ol'

Sarky to pop up somewhere new. Maybe I'm too pessimistic.

Oh, here's an interesting sidenote. I knew that

there had been some interest in Thalidomide, but didn't know about any

success. Dr. Bob said that in a small trial they did, it tended to

relieve the pain of peripheral neuropathy, but not the numbness. So

that was an option for the pain in my feet, which is really getting

debilitating. Downside, besides jumping through many large hoops for

approval, it costs several hundred $ per month. I didn't even ask

about side effects. Right now I don't think I'd be interested. If

these feet get much worse I might give it another look. Anybody else

tried that?

Well, I know there is more, but I'm really tired,

so I'm hitting the sack.

P.S. I got another break this week. I've had

trouble with an upper molar for a couple of years, hurting off &

on. It has a large filling in it, the tooth had cracked a year or so

ago & had to be repaired. It started hurting really bad a couple

of weeks ago. My dentist thought it needed a root canal, so he sent me

to an endodontist, who had done 2 other root canals on me. BTW, I

don't think they are bad at all. I was thinking that I would just get

the tooth pulled rather than get a root canal because I don't have

dental insurance or money for a root canal. The endodontist happens to

be the husband of a doctor friend of mine. I worked with her over 25

years ago as a nurse when she was an OB resident. I explained that I

didn't have insurance anymore. I'd like to save the tooth because I

had already lost the molar behind it, but I'd have to work out a long

payment plan for a root canal. He told me he wasn't going to charge

me! Nothing! When I said that I felt like I should give him

something, he smiled and said, "A cookie!" So I'm making a big choc.

chip cookie to take in next week when he finishes the root canal. It

sure pays to have friends in grody places.

Ramblin'

Rose

Moderator

Find

flowers, candy and directions to a romantic restaurant with Windows

Live Local

-- The Lord bless you and keep you:

The Lord make his face to shine upon you, and be gracious to you:

The Lord lift up his countenance upon you and give you peace.

Numbers 6:24-26

Attachment: vcard [not shown]

February 13, 2006

Rose

That's what the original doc called an exam, sticking

me with a hat pin.I've been getting some feeling back

in my back since I started the Cytoxan treatment but

the bad news is the feeling is pain quite often. Sigh

My legs feel like your using a cheese grater on them

most of the time if I run my hand up my leg. I tried

rubbing my hand along my shoulder & arm & got the same

results. My question is do I have to mail myself $200

for the self exam? LOL

grannylunatic@...

__________________________________________________

February 13, 2006

Who is Dr. Bob that you are talking about? I saw the Return to Camp

Baughman in your subject line. I saw a Dr. Baughman in Cincinnati,

Ohio. Could this be the same doc?

Bonnie

February 13, 2006

Who is Dr. Bob that you are talking about? I saw the Return to Camp

Baughman in your subject line. I saw a Dr. Baughman in Cincinnati,

Ohio. Could this be the same doc?

Bonnie

February 13, 2006

Bonnie

I see Dr Baughman & get my Cytxan treatments up at

UC!!!!! Do you live in the area? I'm in northern KY!

grannylunatic@...

__________________________________________________

February 13, 2006

Bonnie

I see Dr Baughman & get my Cytxan treatments up at

UC!!!!! Do you live in the area? I'm in northern KY!

grannylunatic@...

__________________________________________________

February 13, 2006

Bonnie

I see Dr Baughman & get my Cytxan treatments up at

UC!!!!! Do you live in the area? I'm in northern KY!

grannylunatic@...

__________________________________________________

February 14, 2006

Hey Rose,

Had to write back on this one. I though I was the only one who did

crazy things like this! I have been poking, pinching and pricking all

kinds of parts of my body. I have places that are numb but no one

thinks anything about it. Right now though, I am just hanging

back....had a great visit with my PCP yesterday and he told me not to

worry about thinking some of my problems are emotional. He has seen me

for the last 20+ years and knows me. He knows I am under stress about

my marriage but that this is not causing emotional problems. At least

someone (medically) believes in me.

Well, I hope you have a pain free day. Take care of yourself.

Terri G.

February 14, 2006