Everything back to normal

[Guest guest]

Hi everyone,

Thanks for your letters of encouragement. I'm o.k. and ready to kick butt

again. To my old friends as well as my newfound ones, and as Sue says, my

extended family, I appreciate your solicitude, it is very much appreciated and

heartening. I know Bobby is perfectly right and indeed a philosopher, she

keeps me grounded. I certainly wish her well in her new trial. That is how I

was going to describe her, as a student of philosophy, but someone else beat me

to it.

I'm glad you are off the hook, Jo-Dee. I posted something about fibrocystic

breasts earlier today. It certainly can be worrisome if you don't know what the

problem is, but I've had it for 60 years and as painful as it can be, I have

survived it, though the doctor keeps a watchful eye on my mamograms. I know a

woman who had it and chose to have surgery to remove her breasts rather than

live with it. She lost the use of one arm and has to live with a daughter

because she can't live alone. She had an option and unfortunately she chose the

wrong one, perhaps without being told what could happen to her.

To CHRIS, I went from 600 mg. Gleevec to 140 mg. Sprycel and had a week's

wash out period. They doubled my dose, hoping to knock out the bad phillies,

but instead it knocked me out. LOL. They kept reducing and I am of the opinion

that they would have been better off on a lower dose and ramping it up a bit at

a time. Be sure and talk to your doctor and give your own input. If you are

interested in the name of an organization that helps with the costs of the

Sprycel, write me and I will send you the address and the name of the contact

person. Different insurance companies have different co-pays. I am sure that

Bristol Myers-Squibb also has patient assistance, and you can contact the social

worker at your cancer center, who will have additional information on

assistance. If you have to go out of town, there are hotels that have medical

discounts, also LLS has a reimbursement program that assists you. The American

Cancer Society in some cities has a rep that gets you a free or discounted room,

also, but you have to apply several weeks in advance.

You will have to get your original receipts and mail them with the forms

provided at the LLS website. Antibiotics are also included in the reimbursement.

They have to be signed by either the doctor or the nurse, so don't wait until

the last moment, because the nurses can get busy and put them aside. My nurse

was late getting it in and it went in just under the clock on the last day.

They make no exceptions for excuses. Be sure to supply a self-addressed,

stamped envelope for her to mail it. I prefer to have them mail it back

directly to me, so I know it's in the mail.

MARGARET, you are another example of what can happen when you don't have a

proper wash out period. Skip told us about his last week. During my washout

period between my ATRA trial and INF, my wbc skyrocketed and they filled me up

with hydrea and I started to turn brown. I don't understand why doctors are not

more mindful about the bad side effects of too much toxic drugs in your body,

and especially a potentially dangerous cocktail mix.

LINDA MALSEED, you have said the magic words, " blood serum level " tests and

metabolismization. I think they should be S.O.P. I would be willing to pay for

the testing myself, to be sure I am able to metabolize the dosage they are

giving me and to know it is the right one for me, then maybe we wouldn't have so

many side effects. Yes, I have been on several trials. I swear I must have

been the only person on the planet on the first one. I never found anyone in

that trial, but one day someone mentioned the name in the ACOR group, and I

wrote immediately to ask about their experience with it and the woman wrote back

and said it was her son who had tried it and it nearly killed him. Thanks a

lot. It was called ATRA, a high concentration of Vit. A with Hydrea and

allopurinol to keep from getting gout from the Hydrea. Next was Inteferon, then

Gleevec, then Sprycel and now SKI 606 (ski). No Tasigna yet, maybe that will be

next. If there is no emergency, I think it is better to get in on the second

phase of the trial, so they have at least some data on humans. I keep thinking

I come right after the rodents. LOL. O.K. I'll show the bull my card.

The fox is wise, thanks for reminding me of that SKIP and KIM. Coming from

someone with your background experience, it makes a difference to know it is

your faith that has sustained you all these years.

MARIA, I laughed so hard, I nearly fell off my chair. I can just see you

going down the road with your window rolled down cussing like a truck driver.

Today was our day for rain instead of yours, it poured torrents all day, so much

so that the tunnel flooded and had to close. Everyone was trying to get home

through flooded streets. Oh, the luxury of staying home in your p.j.'s all day!

It's supposed to rain every day for a week. Thank you all for reminding me it's

not the end of the world.

LLS has a telephone education program coming up on Wednesday, June 22, 2008

at 6:00 to 8:00 p.m. Eastern time. If you want to get in on it, you can go

online or call 1-877-264-4949, ext. 2 to register or email

LLS@.... They will talk about emerging strategies for adult

leukemia, lymphoma and myeloma and the role of the clinical trial.

Blessings and peace,

Lottie