We are are month out of the surgery today. If you have read my posts in "Introduce Yourself", you know this is our second go around. This time they took all the tongue, all the lower jaw, floor of the mouth and the top of the larnyx. They did reconstruction using his left shoulder for the free flap, bone, etc. The set backs were not related to the surgery directly. He had heart fibrilation, pneumonia, and infection in his arm from IVs. This past week he had a problem with fluid in the lungs. None of our local doctors were anxious to take on a patient with a trach tube still in, and he was too sick to take back to the doctors in Madison, WI.
Getting to the big question we have, has anyone had success using chemotherepy after a recurrence such as this? We did in our visits this week meet with a medical oncologist who we will see again next week. The doctor who sent us to him seemed to be doing it because he thought we would need him for palliative care more than chemo as time goes on. We haven't given up and ready for hospice, but are thinking about getting this whipped if we can. I think the tumor board is supposed to have met and may have some suggestions for us too. What questions should we be asking as we proceed with treatment?

Thanks for your help.
Lowanne

Lowanne,

I am so sorry you all are having to go through this again. I was on chemo during radiation. You might ask about clinical trials or Iressa. That has been shown to be effective in some head and neck cancers. I would ask about how agressively they are planning on being. If your willing to fight then there are options, although you may have to travel.

Lynn

Hi Lowanne,

I am so sorry you have to go through this again. It is a nasty diaease. I am also from Wisconsin. I live near Green Bay. Had my treatment in Oshkosh. So far so good. Having another scan in two weeks. I had surgery & radiation. No Chemo.
Was a stage 4 tonsil tumor. I can't offer any advise on chemo but I can offer my support. Best wishes, Danny Boy

Quick intro I am Lowanne's son Mark. Thank you all for your support and answers you have been giving my Mom and Dad.

My mom asked me to check the board for her (the computer is up at their cabin and they are staying at home these days as closer to hospitals).

Main problem they are having right now is with the trac. He is realy having problems with secretion build up. My dad has had bad alergies and asthma for quite a few years we think this might be the cause as it is prime pollin season here in WI. My mom doesnt want to leave him alone for to long as if he starts to have trouble she needs to do the suction and irrigate. (she even bought a personal alarm like you would carry in a purse that is realy loud siren in case he needs her while she goes out to take care of dogs). Any one have any suggestions? (we do have a humidifier right by him and she got a hepafilter to try to keep the pollin down in the house).

I realy wish I could help out more but I am about 80 miles away (actualy live in Green Bay)and can only go visit on weekends.

Mark,

I could recommend maybe trying something with Guaifensesin like Robitussin cough syrup. It will help thin some of the mucous and help a bit. Otherwise, it sounds like your mom is doing everything that should help. I know it is a fretful time for your mother and your father and you. I hope and pray for strength for all of you and a quick and easy recovery!

I suffer from allergies as well and many mornings and evenings it is difficult to breath and I did not have any surgeries. At times it feels as if your breath is being taken away and it is quit alarming.

Ed

Hi, Lowanne, Frank had a humidifier that fit right over his trach, always used it while he was on the computer....think you need a docs order, but it might be worth a try..........Hugs, Dee

Thanks for all the advise. We packed up all the medical equipment and headed to the cabin for a week. The change of scenery will do us both good. It's a chance to get on the computer and read postings myself. We're lucky that our son and daughter use their computer and keep us up to date. I think the humidifier that fits over the trach would have been a good rental. He had it on all the time in the hospital. I may try to get a script when we see the doctor next week. He had the trach last year too, but it was only in for about 2 weeks. We are at 6 weeks now and he still can only go about an hour with it plugged.
We saw the medical oncologist this past week. He isn't recommending anything except aggressive monitoring at this time. We should get the recommendations of the tumor board when we see the surgeon next week.

Lowanne

The tumor board said the same thing as the oncologist...monitor closely. So for the current time no chemo or further radiation.
The trach is still in, but he is breathing better. The doctor said he should get used to it since it may be in for the long haul. All his secretions seem to going down the windpipe instead of the esophogas. They made us think this is typical for people without a tongue.
Lowanne

Lowanne,

I have been thinking about you and your family. I know it must be really difficult right now. I don't know much about glossectomies or trachs but I do hope things get better for all of you, especially your husband. I will pray for you and wish I could do more to help you.

Ed

Lowanne,

I can't remember did your husband have reconstruction? I didn't have the problem with secretions like your husband. I got a suction device to extract the secretions. I am concerned that he may be at risk for pneumonia if he is aspirating. I hope that everyday gets better and better. I still have my own struggles but they are nothing like they were. It does get better.

Lynn

Lowanne
Thanks for the update.. if this is how it's goning to be for the moment is there not a health care worker locally that could help you address some of the issues you raised.. you need some positive answers to his care or you will not have any peace of mind
wish I could help more..
prayers.. love and hugs
Helen

Yes Lynn, he did have some reconstruction using material from his shoulder. They are concerned about the possibility of pneumonia also. They gave us a list of things to look for with aspiration. We rented a suction devise for a month. He doesn't think he needs it now. Time will tell. A therapist I talked to today about assistive speech devices thinks things will get better as more swelling goes. She says she has had patients that took 3 months post surgery to get the secretions under control. I'm anxious to see the speech devices. I think it will be a real boost to be able to communicate with more than just writing and charades.
Jack is proud that his hygienist is now listed in the dental lifesavers on the OCFhome page.
Thanks to all for your good advise and thoughts.
Lowanne