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Port comming out after 8 years! YIKES!

TheSunCameUp
Posts: 8
Joined: Aug 2005

I have had my port in for 8 years, I was diagnosed at the age of 26 in 1996 Hodgkins Nodular Sclorosing IIA. The fix: 6 cycles MOPP/ABV 6 weeks Rad and no issues since.... I guess it never bothered me enough to ask to take it out and my Dr. would put it off every vist for 3 years so I forgot about it..... It is like a third arm now so this may leave a mark! Anyway hope everyone is doing great and if you have any questions that I can answer please do ask.
Robert

kiren
Posts: 40
Joined: Jul 2004

I am a 7ys hodgkins survivor. I wonder why you got all that treatment for 11A. I had 11B and I got rads+ ABVD. I think for 11A they moslty give rads only or ABVD. Wow! for the port. Didn't it bother you ..I had mine taken out soon after surgery.

arica
Posts: 12
Joined: Aug 2005

WOW 8 YEARS?? MINE WAS OUT ASAP. I DO HAVE QUESTION THOUGH. I WAS DX WITH HODGKINS 03 WAS IN REMISSION FOR 5 MOS AFTER ABVD TX. THEN HAD A BONE MARROW TRANS,AND 4WEEKS RAD. I WENT FOR MY FIRST CHEC UP 3 MOS AGO FINE. NEXT PET SAW SOMETHING . I HAD A LUNG BIOSPY NO RESULTS AS OF YET. MAYBE CA AGAIN OR MAYBE NOT. DID YOU EVER HAVE ANY SCARES ?? WERE YOU PET/SCAN NORMAL?? VERY SCARED I'LL HAVE GO THRU THIS AGAIN!!! THANKS. WOULD APPRECIATE ANY INFO ANYONE HAS. !!!

GINA

TheSunCameUp
Posts: 8
Joined: Aug 2005

Kiren: My main tumore was 10cm which was large according to my oncologist, also it was situated in my thymus gland applying prssure to an artery which had my blood pressure going crazy. So my treatment was very aggresive. The "P" procarbazine (Steriods) made me eat like a 3 month starved elephant, I went from 180lbs to 280 in 4 months. So the trip back has been "interesting". I got down to 265lbs last May and by October I was at 200lbs. The trick was to treat my weight as serious as I did my Hodgkin's. After I get this port pulled out without any serious complications, I hope, Then I have a soul bound commitment to get into the best shape I can. I have abs I have not seen in 12 years and at 34 that is sad.

Gina: I totally understand what you feel. My first PET was 100% you go boy! And then the second PET showed shrinking in the main tumor area and my doctor got nervous. Turns out that it is scar tissue. I had Nodular Schlorosing which has bands of scar tissue mixed in with the Reed Stienberg Cell's. This means when the bad boys get wacked you still have scar tissue and your body can absorb part of it for years to come.

My best advice is do not get yourself all worked up. Take it one day at a time. Get your port out when you should >>> yes I should have. And keep your head up. Do you realize how much treatment has changed since we have been treated? Read the new stuff. Soooo many new options out every day. Doctors look at my treatment as being brutal just like my doctor thought using Cobalt Radiation in the 60-70's was brutal. Every day the sun comes up is a good day. You have already overcome challenges that 99% of the world cannot imagine or understand. Apply the gift we received in being a survivor to every aspect of your life. I am doing just that. I went from working at making companies millions while I drew worker bee salary into taking a leap into my own business and making millions for my self. Do not take any answers as the final answer unless it is the answer you want. What can anyone do to you that has not already been done. You are a survivor period. If you have any questions please email me at robertpolley@aol.com I will be happy to answer any questions I can and if I can not answer it we will find you a correct answer.
Robert

TheSunCameUp
Posts: 8
Joined: Aug 2005

BTW Getting this port out this late in the game is scary, however I am here 8 years after treatment to "Getter Done"!
Robert

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