RE: [MOL] Marty [00500] Medicine On Line


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RE: [MOL] Marty



Oh Marty...  You are magnanimous!  I'm FAR from being a "caregiving role model".  My sister is Tony's caregiver...
I'm just being a big sister getting some information for them...that's it!  Nothing fascinating!

But you know, your advise and knowledge has been invaluable to many...  My husband and I have been talking
about a wellness program to assure our good health.  Like a preventative measure.
 
Thanks for everything and thanks to everyone here on MOL...

			Love ya!
			   Liz





-----Original Message-----
From:	Martin Auslander [SMTP:fitecancer@earthlink.net]
Sent:	Wednesday, August 05, 1998 6:25 AM
To:	mol-cancer@lists.meds.com; Liz
Subject:	Re: [MOL] Donna; Marty; Update on Tony

Dear Liz,

I am not a doctor, but I do have many more questions concerning Tony. I
am fascinated and proud of your determination and dedication to be this
great caregiving role model. YOu must give yourself a pat on the back
for taking up the mantle of battle. Many and most don't have the vision
to even know where to begin and that is understandable.  With you as a
caregiver, it appears that when Tony feeds off your most positive energy
of research, it enables him to see options and alternatives.  I am sorry
I can't answer your question about the numbness, It seems as though
there are many other medical questions to be answered first, before a
diagnosis about this condition is indicated.

There are a number of other suggestions, however, that you may wish to
seek and the first is just to take a step back, start journalizing a
wellness program that includes a daily regimen for the both of you, I
say that because you need a program to make certain you take care of
yourself so that you can be daily revitalized to be the caregiver and
for Tony to start a plan of logical, step by step, stressless recovery
that includes:

a-spirituality
b-meditation (stress management)
c-nutrition (includes vitamins a, c, e and selenium
d-supplements and vitamins for his program, custom tailored
e-exercise
f-purpose for living (goals for happiness and health) say planning small
vacations once every two months or continuing on hobbies that keeps him
occupied that he enjoys
g-reading the books of those great writers that bring us all hope.
h-keeping medical records to remind you and the doctors of past
treatments and consultations
 

There is more that I can suggest, but these small suggestions are just
the steps to begin a daily routine of recovery. Keep doing what you are
doing, Tony is i good hands and you are equally with a courageous
survivor.

God Bless
marty auslander

hart4hr@pacbell.net wrote:
> 
> We got back last night from visiting with Maggie and Tony and the kids.  Tony looked good.  He had just come back from the market and was putting tons of vegetables away, he wanted to make a Greek salad for all of us!  There were a lot of carrots and beets in his bags!  He had gained weight so I didn't recognize him at first.  He said he gained 25 lbs. in about 1 month!  For those that don't know, Tony is 42 and has NSCLC.  He complained about his tingling (numbness) in his fingers and toes.  He asked me to ask all of you if anyone knows of anything for that?  Oh yes, he also complained that his doctor doesn't know anything about how to help relieve some of the chemo symptoms like the sores he had in his mouth and the rash on his back.  He said the admin person at the doctor's office knows more!
> 
> Donna, you asked whether the tumor that was treated with SRS was eliminated or shrunk, we don't know yet.  He's supposed to have an MRI done within the next couple of weeks.  This should show how effective the SRS and chemo was.  The SRS was done on his brain tumor and he noticed a difference right away in that he wasn't getting dizzy.  He just completed his first 2 sessions of chemo (Taxol & Carboplatin) and the MRI should determine if it shrunk the lung tumor (primary) which was 4X5.  Their plan is to shrink the tumor and then surgically remove it, if possible.  Tony's talking about (batting around the idea) of SRS on the lung tumor but wants to wait and see how confident his doctor is about open surgery.
> 
> As with everyone, when we first learned that Tony had cancer, the whole family was shocked and overwhelmed.  His mother just cried for days and begged God to please take her and not her son...  Many people: friends and family, came to help, bringing herbal teas, juices, stories of miracle cures, etc...  They were not and still are not on-line, so I started researching the internet for information.  I contacted NCI and received  information on his type of cancer and a listing of all the trials available to him.  After researching the internet and seeing what's available out there, I printed the info and gave it to Maggie and Tony...  They also went to the library and got books on cancer, and talked to other cancer patients they knew.
> 
> After reading up on it, as much as they can, they were overwhelmed and asked others what they thought or what they would do.  I  couldn't answer this question, I just didn't know what I would do...  (Marty, this is to answer your question about AG3340 and Tony)  My husband told them that if it were him, he'd probably go with AG3340.  The AG3340 trial was being used with the same drugs (Taxol & Carboplatin) that were the same standard protocol drugs his doctor was talking about using.  For those that don't know, AG3340 is an inhibitor, blocks angiogenesis, (stops the growth of new blood vessels that bring in nutrients to the tumor) and it blocks it from metastasizing.  It took awhile for him to realize, and it took discussing all the different new therapies and trials...but ultimately, Tony realized that he just didn't want to be part of any trial because of the risks involved.  His present doctor is a lot more positive than his first doctor, and indirectly implied that Tony !
!
wo!
> uld be around 5+ years (his first doctor only gave him 6-24 mos).  So, based on this, he's hoping there will be a cure, or another proven therapy to additionally prolong his life... and so, he decided to go with the traditional therapy.
> 
> Donna, you asked why he opted for SRS...  He had SRS done because they needed to take care of the pressure that was causing his dizziness and numbness on one side.  The brain tumor was located in an area that his neurosurgeon said he wouldn't operate on.  So the doctor (first doctor) said he should have stereotactic radiosurgery, a non-invasive alternative surgery to open surgery.  He was considering either having it done with Gamma knife at USC or X-knife at UCLA and decided on X knife because at the interview there, they sold him on it being more flexible.  (He later had a second opinion done with a doctor on staff at UCLA and dropped the first doctor.)
> So there's the update on Tony...  Forgive me for making this too long...I hope I didn't confuse anyone.  If anyone can help with his tingling finger and toes (numbness), please let me know.  Thanks for listening. Love, Liz
> 
> 
> 
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