I'm glad to have found this site!! It has provided me great comfort and a ton of information. Thanks! My significant Other has cancer and I am his primary caretaker. I tried as best I could to describe his battle and current condition. Feel free to correct or let me know if something doesn't make sense.
My Significant Other, Ari 5/7/1961, non cig smoker(yes, pot), non drinker
6/20/08 DX FNA confirmed Stage4 SCC MET BOT (HPV+), which had spread to both sides of his neck. 8/6/08 had trans oral laser surgery and RND (both sides) to remove the tumor and nodes. Followed with RAD. He never asks questions so amount unknown. Went into remission for almost 3 years.
6/15/11 DX New Primary Stage4 cancer larynx (subglottic), had RAD and chemo (3 rounds)+ 5-FU. Tumor shrunk was undetectable. 12/12 PET DX Positive node near the carotid and subclavian arteries. Had RAD. 3/12 PET DX Positive in another node. Had more RAD. Cannot receive any more RAD. Has had maximum amount. 6/12 PET DX Cancer is back in larynx. He underwent a total Laryngectomy 9/12 DX PET positive tumor (2.5cm) in hypo pharynx. Has had 3 rounds of chemo so far and that�s all. Hoping for a miracle

Hi,

Welcome but sorry to meet on this bus. Your partner has had a very serious set of battles with Cancer. I am just starting so have little to offer to you. The term miracle does seem appropriate given his history.

How has the discomfort and pain levels, is he managing satisfactorily? Hopefully, he can at least live well without having pain get him down.

Best to you both,
Don

Hi, So sorry to hear all your partners history.
At this stage if they wont offer him further radiotherapy are they offering surgery?
My husband had total glossectomy/laryngectomy/pharyngectomy . Chemo alone will not have a curative intent. If I was you I would push hard for more surgery.
I'm sure others will chime in with more advice .
Tammy

No, his neck is like leather no surgeon will operate on him he has had 2 RND. They have told us there is no cure. Absolutely no more radiation as I think he has had too much already talked about getting him into trials but no openings right now. He has a scan on Thursday to see if chemo is shrinking. Initial scan after 1st round a couple months ago showed no big change In size. But they can only accurately measure one part of the tumor due to its location. Our options are very limited. I am very scared that this is the beginning of the end.

Thanks!!

Welcome to OCF! Im very sorry to see what your patient has been thru. It certainly is quite alot!

We have one member here who has undergone 3 rounds of radiation. I know of another person who has done rads, brachytherapy and is currently doing another small round of radiation. There could be a difference is where they are being treated. A large cancer center may have a difference treatment plan available. Major cancer centers have a much higher track record for helping cancer patients, especially those in unusual circumstances. They will employ only the best in the field, the doctors who are the most experienced and up to date. Its worth a shot to at least make a few phone calls. I always say, "you dont get if you dont ask". If you are already being seen at a large cancer center, go for a second or third opinion at another one.

Good luck!!!!

Treatment Facility article

Cancer Centers list



PS... Please follow the info I sent you to make a signature when you can. Thanks!

Sorry to hear of your situation. I'm somewhat similar having metatastic Oropharyngeal cancer 5x, radiation 3x, and 3 neck dissections, two which were radical. Sounds like the cancer that was in the lymphs after the RND may not be the lymph's, which also happened to me, and is roaming cancer in my case. My treating hospital only wanted to give me radiation and chemo after my last surgery, but sought out treatment elsewhere. I found a doctor in NYC who is world renowned in Brachy, and especially HD-IORT, High Dose Intraoperative Radiation Treatment, which I eventually did. They did another neck dissection to take out remaining cancer, IORT radiation directly on the tumor site in the exposed neck during surgery in the OR, and then a pec flap for better healing, and so I could receive more radiation, chemo too, which I completed in November. It also depends on the amount of radiation each area received, measured in Grays (Gy) to get radiation again, and a few had gamma knife. I had a total of 130Gy, and few others like Kelly and Charm had more. Good luck with everything.

HI there... you've heard from some of the best here in terms of recurrence and your partner's type of cancer. I would very strongly suggest if you aren't at a top notch ccc get to one I know someone who has had 5 rounds of rad. Her cancer seems almost chronic, and she says her radiation oncologist always finds a way to give her more. I think she is at MD anderson. So getting as second opinion outside the local pool you have been seeing might be an option as Paul - I believe - did. Look into clinical trials. As long as there isn't distant mets I wouldn't give up.

welcome. Hope you find your miracle. hugs

I have received three rounds of radiation. My cancer first showed up in the soft palet and the rads (IMRT 70 gy) got that and I have had no recurrence in that primary site. Two years out I did have a recurrence in a lymph node in the upper neck. The node grew around the carotid artery which eliminated surgery as an option for treatment. I went to University of Michigan for a second round on IMRT radiation (70 gy). Since this was a different location it was felt I could receive more radiation at the full 70 gy. Dosage.

My first PET scan after this treatment showed residual cancer in the lymph node, meaning the radiation did not get it all. I was told I could receive no further radiation and all they had to offer was palliative chemo with a life expectancy of 9 months.

I scheduled three second opinions in the hopes of finding a surgeon who would attempt a surgical removal of the lymph node as U of M's head surgeon refused to do an operation so close to the carotid.

I went to MD Anderson where they offered me intensive chemo to see if they could shrink the tumor to a size where surgery could be done. They said the odds of this happening where very slim to none but it was all they had. They said that the best surgical team in the world was at Sloan Kettering in New York and that if anybody had a surgical option would find it there.

My next stop was at the University of Pittsburgh where they were doing a trial using Cyberknife radiation. This is a much more focused type of treatment that delivers high doses of radiation in 5 sessions at 10 gy. a session for a total of 50 gy. They said their trial was showing that most patients could tolerate this additional "Focused" radiation. The trial has been running 4 years so they have some good data on this.

My third stop was at Sloan where they said they could not do the surgery and felt my best available option would be the Cyberknife approach.

My fourth stop was back at U of M where I laid out what I had learned from the second opinions. They said they had never seen a tumor shrink enough to change an inoperable situation to an operable situation and said that Pittsburgh was my only option should I want to take another shot at radiation.

I was treated at Pittsburgh and the treatment looks to be holding. I had a 10 month PET scan that was clear of cancer just two months ago so all is good for now.

On this board we have another member (charm) who has had two additional recurrences that were treated with Cyberknife (one just completed) and who now has a clear PET. Charm had this done at another facility. I referred another member (Nocam) to Pitt. They treated him recently and the treatment had NO effect and his tumor did not shrink, it actually got a bit bigger. So the success rate here is limited.
You also have PaulB who has taken a different approach. As you can see from my history, I am not afraid to search out any and all options available to me given the fact that the only alternative I was being offered was palliative care for a few months till death.

I will send you contact information for the University of Pittsburgh in a PM and I would encourage you to do additional research on your own. Maybe Paul and Charm will be able to get you in to see their specialists for additional opinions.

I can say that those of us here with multiple recurrences who are still around to tell about it are the ones who actively sought out all possibilities.

Best of luck and keep the faith.

Thanks Kelly. I saw Dr. Louis B Harrison, at Beth Israel, who is a radiation oncologist, specializing in Head and Nevk Cancer, actually an ENT too, and is chairman of oncology for all their 5 hospitals. I discounted this hospital back in 2009, being not on the top list or some reason, probably since they do what others may not, but went to Mt. Sinai instead. Through the years, I heard of the doctors reputation at BI through the years, literature, and eventually wound up there in the end. I found out they are top in the industry for ENT, and perform more H&N surgeries in the country. The other top places in NYC, in no spefific order, are listed below. I don't have experience outside nyc, but many have top hoptials too, as mentioned, so there are more places than one to turn to. There is Hope Lodge NYC where you can stay at, and did myself for almost two months, and elsewhere in the US.


Beth Israel Dr. Harrison, Urken, Jacobson
Mt. Sinai Dr. Eric Gendon
MSKCC Dr. Jatin Shah
Columbian Presybeterian
NYU
Lenix Hill entered the scene with some jumping ship from the above

As Kelly and Paul have posted, the old "maximum radiation" story is not necessarily true. Two factors are important:
First the total number of GY in radiation he has received. They used to say 77 was the max, but Kelly had 190, I had 137 and Paul 132. Second, the fields already radiated. It took weeks for my Radiation oncologist to compare the prior radiation fields and plot a new one that would not cause too much necrosis.

My RO is Dr. William Harter at Georgetown University Lombardi Cancer Center in Washington DC. Could not hurt for your doctor to give him a call and discuss this. My neck is pure leather also on the left side. The key is to go to place that has something like CyberKnife which can focus the radiation more than the regular IMRT sites.
Charm