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NPC mets to bone

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Just curious if anyone else had NPC metastasize to bone? My first PET back in June revealed multiple spots on my spine and sternum that are all clear now on PET in late August. Docs are telling me that if it got to the bone it's in the blood and will come back eventually. Prognosis is 1-3 years with full aggressive treatment or 1-2 without anything further but a slight chance of total cure with everything. 3 rounds of Cisplatin/Gemzar cleared everything up and now we're most likely going forward with 35 rads and Cisplatin every 3 weeks. I'm not sure about buying a year for the discomfort of radiation and chemo but I sure like the idea of a total cure. Anyone else have to make this decision after being told the NPC had gotten into bone? There's a lot of back story that goes with all this but I'll spare y'all for now. Thanks,

Bob

D Lewis's picture
D Lewis
Posts: 1564
Joined: Jan 2010

Bob

I haven't been there and done that one yet, but I can state that the memory of the pain of the radiation and chemotherapy will quickly fade. I had 38 rads and three rounds of cisplatin. It sucks, but it doesn't suck totally. I am so grateful to be here, and to see the sun rise and set every day and to spend time with my family and friends. This is worth it, even if only for an extra year. And, then again, it could be longer!

Also, your name says it all. Go for the adventure.

Do I know you? Your picture looks strangely familiar.

Deb

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Hi Deb. It would be worth a year but I'm going for much, much longer.
You must recognize my property in Arizona. Just a little Canyon of mine. Stop on by anytime and holler.
Bob

JUDYV5's picture
JUDYV5
Posts: 392
Joined: Jun 2010

So sorry for your news. The radation (35X) concurrent with the chemo (cistplation 3X)
is hard - but the memory of it does quickly fade. They could not remove my tumor. With the chemo and radiation it is now gone. I am 4 months past treatment and received my second Ned.
Totally worth it.

Hondo's picture
Hondo
Posts: 6210
Joined: Apr 2009

All my NPC has been only to the head and neck area nothing so far in the bone. I am going on 9 years from the first treatment and 6 years from the second treatment, side affects are hard to live with at times but all in all Life sure is good.

vermontliz's picture
vermontliz
Posts: 11
Joined: Aug 2010

Hi Bob,

My husband completed his chemo/radiation treatment for BOT Stage4 and while the PET in August revealed an all clear in that area (hooray!) it lite up on his lumbar spine on the L3. Heck yea he decided to treat that...he just finished rads (three "radiosurgery" treatments) to his back on Tuesday. He considered this "easy" after the 35 rads for the neck. He had a lot of pain in the back, and he is now taking a long walk with the dogs. It is worth it, - I am so grateful to have my husband in my life...every single moment...stay in the day.

Greend's picture
Greend
Posts: 678
Joined: Feb 2010

Seven grandchildren and a new wife...yeah it was worth it.

vermontliz's picture
vermontliz
Posts: 11
Joined: Aug 2010

I wanted to mention that our onc. decided that it would be better to wait and see before starting my husband on chemo again. They said they would rather have a target they could concentrate on and not necessarily administer the chemo with out a specific target. My husband liked that approach better than doing the chemo again at this point.

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