#96946 06-07-2009 09:55 PM | Joined: May 2006 Posts: 57 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: May 2006 Posts: 57 | Hello everybody, It's been a very long time since I posted, but have been lurking. Things have been up and down so many times, but I was able to answer most of my questions without bothering anyone. Unfortunately, that's not the case now. I will spare you all the details (please see revised signature), but Dennis has just found out that his margins are still positive along the vertebra in the neck. He just has recovered from his second pec flap reconstruction on May 7. (Believe it or not, he is going back to work tomorrow....YES Dennis is still the stubbornest man I've ever known lol) The surgical oncologist says further surgery is not an option, but he is looking into possible re-radiation. Even if the original radiologist declines, he is determined to get him treatment through the rad dept. at Johns Hopkins. My question is how many of you have been re-radiated after recieving a so-called lifetime dose? And is this "lifetime dose" related to strictly the initial area? Or maybe general area (such as "neck")? Rereading this, I feel like the most illiterate person possible. Please overlook my deficiencies. I just need to get a grip on the idea of radiating again. I will never forget the original radiologist telling us that "I only have one chance to cure you, and it will be hell, but if you will trust me, I will get you through this. If not, salvage surgery is our only choice". We've had two salvage surgeries so far........ Thank you all, and to the old friends here, it's a pleasure to see you again....and to all the new names, I'm so sorry that you have to be here. I would much rather you didn't have a reason to read this. Love, Mandi
Stage III tonsil, Dx 8/14/2002,chemo and rad...reoccurance 8/3/07,Base of Tongue,vocal cords,stage IVA,total larynectomy and glossectomy 9/4/07 with pec flap...reoccurance Nov. '08 and Feb. '09 (positive margins remained after each operation) Second pec flap May 7, 2009. Still positive margins.
| | | | Joined: Sep 2006 Posts: 1,357 Likes: 5 "OCF Canuck" Patient Advocate (1000+ posts) | "OCF Canuck" Patient Advocate (1000+ posts) Joined: Sep 2006 Posts: 1,357 Likes: 5 | I had 32 radiation treatments to the left side of my mouth and neck in 2004, 30 treatments Jan/Feb 2008 to the right side of mouth and neck. Yes, it is possible. I was bugging my RO the other day - saying that if it came back again I expected additional radiation. He did not discount it - saying that there are various "knives" and other radiation treatments that might be a possibility. I think it would depend on the location and time since last radiation for him to rule it out completely. It also would help for your RO to know how radiation was tolerated before. I certainly did not become emaciated or have permanent total tissue/bone destruction from the radiation.
It certainly would be worth looking into.
Donna
Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
| | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | Mandi,
We are seeing more people that come to this site saying there are getting radiated for the second time so lets pray this will do it for you.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Jan 2009 Posts: 253 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jan 2009 Posts: 253 | Mandi: A lot has changed with radiation since 2002. Many of the machines give a pinpoint dose instead of a large scattered dose. So it may be possible to give radiation to a patient a 2nd time again.
Secndly, since you've had positive margins, I would ask your doctors about "Induction chemo Therapy." Myself and several others have had very favorable results. Ask your doctor about the TAX 323-324 "Cisplatin, Fluorouracil and Docetaxel in Un resectable Head and Neck Cancer." published in the New England Journal of Medicine on October 25, 2007. Also in the news section of OC website, another study has just been published that repeats the results from the first.
Sandyst
This is not an endorsement, but it never hurts to check out all your options. If you have any questions, please write.
Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0. Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09. OCF member/supporter
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