Just found out today that my husband has 4 more tumors only 4 months after mandibulectomy surgery and he has recovered so well. Surgeon is referring us to oncologist. He's had radiation at 4 rounds of chemo, 3 were induction chemo and he's highly allergic to erbitux. Not sure what to think next...any advice is appreciated...does he continue treatment or try to check items off of the bucket list. I'm concerned for his quality of life after what he's been through

I'm really sorry to hear the news. Don't get too far ahead of the process. See what the oncologist has to say.

I am sad to hear your news. Of course we all think of the worst when given this news. I agree with Uptown. See the Oncologist and listen to what he has to say. Get a second opinion. Preferably from a Comprehensive Cancer Centre. Above all, have hope.
Tammy

thank you for the advice...I need to remember the mantra...one day at a time. Just very disappointing news after what he went through with the big surgery.

Im so sorry! Try not to get too far ahead of yourself. I know its so hard not to worry but it will only add unneeded stress making everything harder.

Ive been thru recurrences myself. Its NOT easy!!! I suggest a comprehensive cancer center (CCC) if for nothing else a second opinion. There could be other options like brachytherapy. Smaller facilities will not usually have as many options. If he is already at a CCC, still seek out another one for an opinion.

Best wishes!!!

Why do they keep doing chemo? Chemo does not kill this cancer. He needs a chemo radiation combo, or straight up radiation. He should have had it after the surgery particularly because this is his third dance with this cancer, it's already proven itself to have staying power. This can be an invasive and aggressive cancer as you've seen. Is he being treated at a CCC? Normally they may try the surgical route once, twice, even a third time, but after a 2nd recurrence, he should have been slotted for rads immediately after his surgical healing period was over (to be honest I would say - after it showed up in his tongue it should have been radiated post surgery). They are taking chunks out of him and giving him chemicals that have minimal effect but also compromise him with a lowered chance of a cure. Ultimately - they are chasing it rather than being proactive. Chemo may shrink the tumor, or soften it up, so that rads can come in and kill it - I has never cured this type of cancer that I know of. Do talk to your onc. If they want to operate fine, but I would absolutely push for radiation post haste. Hugs - sorry. I'm assuming no rads as you have none stated in your footer.

I am sorry to hear the bad news. It really does help to take it one step at a time. See what the oncologist has to say; there may be other treatments available. Don't forget to take good care of yourself, too.

thank you for the advice about radiation. He did have radiation on his soft palate three years ago...where the first cancer appeared. Then it was on his tongue and they don't radiate the tongue. Now that he has had the mandibulectomy, he actually has new tissue on his neck (from leg and chest) so radiation may be an option. Thursday is our Dr. appt so I will ask all of these good questions. He's had 4 rounds of chemo previously so I'm not sure if it would even work. One round of cisplatin, while undergoing radiation and three separate rounds of induction chemo after that.

What do you mean "they don't radiate the tongue"?

Dont forget to ask about surgical options too. Chemo is a tool that helps make radiation more effective. Alone it is not a cure but will be used for palliative measures to extend a patients lifespan.

Please do not rule out getting a second opinion or going to a CCC. Recurrences arent as easy to fix as the first round of cancer.

Good luck with everything!!!

the oncologist said that more chemo would have a 20% chance of shrinking the tumors because he has had so many rounds previously. He has a PET scan, and appt with radiologist next week and then they will review his case at the tumor board and provide a recommended course of treatment...hmmm

There have been many here that have had radiation more than once, some even more than twice. Let's hope they find something that will finally put an end to this.

Firstly they do radiate the tongue!!!! I know mine still remembers!!! (Taste is still a little funky.) - ideally he should have had radiation to his tongue way back, now that he has a more progressive cancer he can be reradiated. Some have been radiated to the same area more than once, in his case it's a fresh area so there is no reason they can't! Hugs

that's good to know...thank you everyone..

prognosis is not looking so good. Oncologist says there is a 20% chance a combo chemo regime would be effective. Radiologist says its all about prolonging life and he could do a shorter dose of radiation to see if it can be effective and gave us the quality of life talk. hubby had a PET scan, on the second try, it was difficult for him to lay flat for 30 min wo moving because of he's not able to swallow. So we will get results on Monday. Another oncologist appt and then on Thurs. with radiology oncologist again. Not sure what to think. Husband's feeling low for one of the first times ever. He's always so positive...

Missy, please dont give up! Sometimes the outlook can look like nothing is possible but people can overcome things and prosper. Im speaking from experience. When I was diagnosed with my third round I almost quit and let nature take its course. By now I would have been long gone. Between Brian Hill telling me there 3 time OC survivors really did exist, not many but there were a few out there and the members of this forum begging me not to give up before I even tried, they convinced me to keep going. Now, I personally know of several other 3 timers now who have been cancer free for many years. Anything is possible.

Wishing both you and your husband the strength to fight and win.

Missy its important to keep the chin up, its very contagious if it drops! Courage is being brave when you have no choice. We're with you all the way. Love and prayers for you both.

Missyp, when John was demitted from the trial, we were told that the trial had a 10% chance of working. Chemo has a 20% chance. The goal now is maintenance for us. We have both agreed to take it as it comes. We have found our therapists (yes, we each have our own) very helpful in coming to terms with reality. We have not given up, but we feel we are better at coping.

Thanks for the hope...PET scan revealed several new spots all in the neck, lowest is near the thyroid. Hubby is trying to decide if he should have a trach put back in. He's had 4 incidences of waking up and not being able to breathe. One of the spots on the PET labeled "very worrisome" is just above his voicebox and near his epiglottis.. which could be the reason for the breathing incidents..He will start chemo next week. Looks like radiation is not the best option...will officially hear from the tumor board tomorrow a.m.

any advice for him on trach decision? He doesn't sleep well because he's afraid he will die in his sleep from not being able to breathe

we are back in the hospital. My husband had surgery for a mature trach or stoma. Basically one where a hole is cut vs a slit and to close it requires stitches. He will start chemo next week. They are not recommending more radiation. the Dr. scared me today...we talked how his disease is not in a curable state any longer and I talked about a trip to a beach house my husband wants with his family. I said I was worried he would be too sick to go when chemo is over in Oct. and he said he wouldn't wait that long and we should go on the trip when he has his week of rest in between chemo transfusions. the Dr. said that is cancer grows very quickly. how do we know when I should take considerable time of work, so I have no regrets?

I would assume that he is in decent health now - considering. So I would go ASAP. Hugs...

If you have been at your job for over one year full time you are entitled to take up to 12 weeks to care for your spouse under the FMLA. Its unpaid time but some employers will pay their employees something for some or all of the time off. Check with your HR dept to see what you are eligible to take.

If you can afford to take off, do it. You can have many happy memories of good times where your husband is still feeling pretty good. Dont delay, take that trip.

Best wishes!

our surgeon said surgery doesn't offer him any advantage at this point. I talked about a family vacation that my husband has asked for and he told me not to wait until chemo is over (in Oct.) but to do it on his one week break. That scared me, so I asked him today if I should use my 4 weeks of remaining vacation now. He told me that he will keep us advised and that when he starts to loose engergy and take 3-4 hour naps during the day, that would be the time to take vacation. I don't know what to expect but know I don't want any regrets.