Thanks Donna. You are so right, each Cancer, and person, even hospital and doctors experiences are all different. This Cancer is persistent! I'm even getting confused with the recurrences.

10/09..Dx tonsil primary, BOT, Valleculla, 3 bilateral lymph nodes. Had induction chemo. Too sick to complete treatment, in hospital nursing home 6 months.

7/10.finally able to get a PET..Clear! 5 days chemo in 09 killed everything

10/10 Cancer free was short lived, it's back. two left lymph nodes, one which was new

2/11 35 IMRT, after teeth removed. chemo denied

7/22 30 HBO treatments did to infection, abscess, necrosis in jaw, back molar

7/11 Cancer still in left lymph node, another new one left side. Chemo, radiation denied

10/11 radical left neck dissection levels II-V. Cancer found in neck muscle removed. Chemo, and rads denied.

2/12 All Clear PET scan!

5/12 Cancer returns to level V. Lymph node or roaming cancer, had RND, so not much left. Two days before surgery on 6/22 Another cancer was found in level III left neck, and removed during surgery. Pathology says no clear margins, and perineural and Lumlho vascular invasion. Cancer likey to return. Chemo, Erbitux, rads denied by RO, and MO.

6/12 seeking other options. MSSM will do Erbitix, IMRT

I made a mistake, I had 4 recurrences, who is counting.

Well no matter how many times - it is definitely far too many. If it was me, I would take every option offered - chemo and radiation. Hit it as hard as you system can handle - seeing as it is such a persistent beggar. Good luck with your decision. Hugs.

Donna

Thank you Donna.

Paul, your case is almost similar to my dad's. He had SCC on Left Tongue - went for Operation, Chemo-Rad (Cis x 6 wk + 60 gy rad) first time and had all clear PET in 2009.

He got second recurrence in 2011, went for TPF (induction chemo) but it failed to shrink tumor on his right neck node. Went for radical surgery but no clear margins so he went for another 60Gy of radiation on right side only.

Another PET after 3 months showed persistent tumor and a new recurrence in neck level V. He was on Gefitnib 250 mg till his death (26 May 2012) due to cardio-respiratory issues and blocked right carotid artery due to radiation. He did not die of cancer but the treatment took toll of his body.

If you decide to go for IMRT, you will have a very hard time. Discuss the odds of surviving just on Erbitux with your Medical oncologist. With agressive treatment you may increase the quantity of life but at the cost of quality - A very hard decision to make.

I am just speaking out my mind, apologies if I have overstepped.

Eshwar, You definately did not overstep! That's the advise I'm looking for, honest! At this point, I need to know the good, the bad, and the ugly. I'm sorry about your father. They don't tell you theses other things that treatment does, which scared me the most.

To be honest, I'm fearfull of the radiation the most now, ven thougn I had a bad experience with chemo, so now Erbitux is suggested. The MO said I could do it alone, but what benefit, he doesn't know, but it's my choice. something may be better than nothing?

Yesterday i sent all my papers to a hospital here in NYC For a third opionion, hopefully I here from them soon. Today, I'm callin my old RO, and MO for advise, even though they both said no, I think they will help. Wednesday I go to the ENT to take my stitches out, but he is from he same hospital where new treatment is suggested, and said they could not help me decide.

Thank or you help, and I appreciate it very much.

Hi Paul, I was in a similar position to you back in 2009. I had a very aggressive recurrence with 6 tumors bilaterally in my neck and around my left jaw. I was originally told that it was inoperable and that I was not a candidate for further radiation as I'd already had maximum grays in a treating a previous recurrence. I was initially told that the only treatment option open to me was chemotherapy, which might slow the cancer but not get rid of it. After much discussion amongst many experts my surgeon agreed to surgically remove as much of the macroscopic deposits as was safe, and then I would have a 3 week hospital stay, receiving Cisplatin weekly and having IMRT twice daily. We did not have cyberknife in Australia and I don't think it would have been an option for me anyway given the wide area that needed treatment. I had to sign lengthy disclaimers in relation to the risks involved with having the 2nd round of radiation TX and these risks were death (carotid rupturing short term and increased risk of blockage long term), quadraplegia, nerve damage and many, many more. I was an otherwise healthy 51 year old at the time and I remember telling my RO that if it bought even another 6 months then it was worth any side effect that might come my way. Strangely the biggest side effect that I actually got I don't recall being discussed with me and that was completely losing all function of my saliva glands and my ability to eat. MY epiglottis doesn't function efficiently and I have very stiff muscles in my throat and neck, so I have a permanent PEG. I also have problems with my speech. Even with these side effects there is not a day that goes by that I regret having had this surgery and treatment. Nearly 3 years later I am still here and for that I am grateful and was very lucky. Any time I had a whine about pain or other side effects my RO used to remind me that I was very lucky to be alive. After the fact he told me that even with treatment they had my odds at less than 10%. Without TX they were 0%. I'm so very glad I lucked out and they were prepared to be very aggressive with my TX.
I know your decision can't be easy given you have other health problems, but I don't think that you would be offered the TX if there wasn't a chance that it would be effective. I hope I haven't scared you too much - nothing about this cancer is easy - but despite everything I have a good quality of life and I make the most of everyday!

Eshwar, it's good to see your posts again my friend and I'm sure all of your wisdom is much appreciated. I've missed you my friend

Eshwar, I am also glad to hear from you.
Maria

Thank you very much Sue. It does not scare me. I have been through hell, almost died, in ICU for a month, hospital 6 months, blinded, paralyzed, lost 100 lbs, and intebated, the bed sores took 2 yesrs to heal, just from 5 days of induction Chemo, so I'm vety cautious, and not as optimistic as I was, but I did pull through in one piece. I was thinking the same thing as far as the hospital wanting to do Erbitux, and radiation is a postive sign, but sometimes they are too agressive, risky, as I personally learned.

I'm glad you were able to pull through. I'm still undecided, and my original RO, who I just spoke to, thinks its aggressive at 50Gy. She and her partner are gong to look my case over again, and let me know what she thinks. I trust her more than the bigger, well known hospital, which did the induction chemo, which others drs think was a mistake. I'm the type to watch out for, since things seems to happen to more to me, and more severe than others probably due to underlying medical conditions.

I wonder what dosage they gave you the 2nd round? I read he 2x day fractionated IMRT has less toxicity, able to give more Grays, up to 80Gy, but read for Reirridation it is not better than once daily. The RO won't do less than 50Gy. I asked about cyber knife, and it's really IMRT, I think just the programming is different. Anyway, they don't do it here. Don't thinks it's a Sandard treatment yet, they do IGRT, which may be a little bretter than IMRT, and can do that too. Brach therapy is not done here, and RO doesn't think it would be any good. I have a number of good hospitals in NYC, but you have to send Everyhing just to set up an appt. I did sendvitvto Memorial Slosn Kettering, which is the number two cancer center in the US, at least by US Business Report.

Your story is amazing, and definately will factor in what you said. I can't take Cisplatin, which I had, due to my kidneys now.

I have a friend who recently did brachythera[y in one of the major NY cancer centers. I will find out where she was treated and let you know. The brachytherapy according to what she told me was not as bad as she expected and she now feels very hopeful that the cancer is finally gone.