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update and thank you

victor53's picture
victor53
Posts: 97
Joined: Apr 2008

Thank you ittybitty and sassyque and everybody for your thoughts and prayers and the time you put in here.
I have had 3 chemo seesions so far and they are not too bad. I think the steroids i take the night before (dexamethasone)and the anti nausea med zofran are working good.
The acne rash from the erbitux has been bad and itchy . But that is supposed to be good meaning that the stuff is working. I get to see my medical oncologist after tommorrows chemo session. I got to see him once for 10 minutes in the 2 months before my treatment started, i dont mind i think he is smart and my treatment is the latest method for my advanced case.
My surgical oncologist i dont trust i have caught him 3 times being sleezey trying to throw me into peg tube a month early because he had an opening or cancelation , then throwing me in a radiation private place far away because he has along standing relationship with a doctor there( iwas told yea right more like money invested) but i got it switched so im getting radiation right at the same hospital im getting chemo with the same imrt machine thats even newer and alot less people and waiting around. Plus they private radiation factory place tried to get me to come in to map me and make my mask 7 weeks before i start radiation ( im getting 6 weeks chemo and 2 week rest to start) and the tumor is supposed to shrink and i should lose weight and ive read everyone gets mapped and masks 1 maybe 2 weeks before, so i asked them they told me that the doctor was going on vacation and was booked full when got back, so i told social worker who turns out was already upset with my sleezey surgical onc for sending other people there when they could be treated at the hospital where they are getting their chemo. So he got me switched i met with my new radiation onc and he said he wouldnt map and mask me till my chemo is done. Then the other place admitted to my social worker that they were wrong trying to put me in that early.
So ive got 3 more weeks of chemo then 2 weeks rest then 8 weeks of radiation and chemo then 4 weeks rest then surgery so 4 months before surgery ive got to find another surgeon i think my guy is a burnt out, self serving, go thru the motions dolt.
But i am stuck with only state of rhode island blue cross and medicaid as i had just moved back into the country and only planned to be here for 6 months when this hit.
So i dont know if i will be able to get a different surgeon ( mine maybe a good surgeon) but i dont trust him i cantell hes the kind where if it comes to a decision his decision will be what ever is easier or more convienenent for him.
i have been reading about TORS robotic surgery i wonder if i can get recommended to get that and my medicaid will let me go to Pennsylvania where they have it.
Thank you everone victor

sassyque
Posts: 44
Joined: Jun 2008

Good luck Victor and know that you are in my prayers.Keep the faith and keep in touch so we know how you are doing....Sassyque

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Sounds like you did like many of us have. The fear of that first tx is blinding and all comsuming. After the second or third one you begin to realize the the light at the end of the tunnel is NOT an oncomming train!
Keep up the good attitude and you will be just fine!

BILL

wboaz's picture
wboaz
Posts: 48
Joined: May 2008

I'm back from vacation and catching up a bit. I'm glad to hear the treatments are going well and good luck finding a surgeon you like. He is the specialist you are likely to see the most of as you recover so having one you trust is important.

You're in my prayers.

train-nut
Posts: 101
Joined: Jun 2008

I am a hypopharyngeal cancer survivor. Had 3 principal docs who I came to think of as Dr. Negative (the radiation onc.), Dr. Medium (the medical onc.) and Dr. Positive (the ENT specialist). You have to figure out their reference point and interpret some. Like you I had the PEG tube early on. I probably could have done without it but many find it to be vital. You are smart to take charge of your situation and change docs as you see fit. I am needle-phobic, doctor-phobic and hospitale-phobic but I did it and you can too. It wasn't a joyride but it wasn't nearly as bad as what you hear. Wish you the best of health.

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