This is my 1st posting ever. My husband has tongue cancer and was cancer free for almost 3 years until this last Sept. He already underwent chemo/radiation with terrible side affects and bad results. I am sure all the same as what you are experiencing now.Cisplatin is a very nasty drug as well as Amaphostine. He has had many surgeries, partial glossectomies,jaw bone removal and most recently another round of chemo/radiation. This time the side affects have been remarkably more bearable- different doctor, drugs and facility. What a difference. His spirits remain pretty good but I have found this go around very difficult personally. Cancer is such a tremendous nightmare for everyone involved. It absorbs your very being-and yes, like being on another planet.
I wish you the best during this treatment. Since this is my 1st time posting on any site, I look forward to hearing from others. We live in a rural area and there is no support system anywhere close to us.
Vic

You have found the best place to get support and info. We will be here to help you both get thru this.

As a caregiver dont forget to take time for yourself too. You have a very difficult job taking care of your husband, advocating for him and running the household are only a few things you do daily. You probably feel like the weight of the world is on your shoulders. Many caregiver will seek out a therapist to help them deal with all the changes of having a spouse with cancer. Quite a few even take anxiety meds to help them thru the rough days. Its nothing to be ashamed of if you need a hand, we do understand and know what its like. Im glad you joined our group. We are here for not just your husband but you as well.

Best wishes.

Welcome to OCF, Vic.

So sorry we meet on such a horrible place known as cancer. You have through more than most, enduring so much treatment and recurrence. Some can offer guidance on the unique concerns relating to recurrence while we all can offer support and empathy with the position you find yourself in. Please take care of yourself too. Don

Hi welcome... Sorry about your husband. I am so glad his spirits are good. That's half the battle. Welcome and tell us a bit more about his cancer... It sounds like it was oral tongue.. But there are a few different locations and causes here. Best of luck.Hugs

Hello Vic, and welcome. I'm sorry you and your husband have been through so much. You are not alone!

Hugs,

Mama

I have not visited this site for several weeks now but could use some insight. We visited the dentist recently and with so much of the jawbone/teeth removed he needs to see a maxillofacial dentist to create a front bone so that the dentist has something to work with to make dentures will have something to rest on. It requires another surgery I guess with a graft of tissue to do this. A hyperbaric chamber was mentioned since so much bone has been affected/damaged by the massive radiation he has received. This comes from his dentist, not a surgeon nor specialist and I don't know who to contact or what to even ask about all this. I am not sure whether this would be dental or medical. I sure could use some guidance here. Anyone who has been through something similar; please help me.
Feeling lost,
Vicki

If I understand you correctly, the problems your husband has is a result of the oral cancer treatment. What usually happens is the doc can either use a piece of the patients leg bone, cadaver bone or a titanium plate. When having part of a jawbone removed the patient should be going thru whats called the Marx Protocol. This is 20 HBO prior to and 10 after the procedure.

All of this should be considered medical. The dentures themselves would be dental. Which doesnt really make logical sense to me. This can be frustrating for many patients and caregivers as the dentures are necessary due to a medical condition but insurance companies are refusing to cover it no matter how its billed. If you do reading on the forum you will see several others who have been thru this.

Your husbands ENT should be handling this. I would think he is going to need both the ENT and an oral surgeon together to take care of this issue. Ask the ENT who he would recommend, that can be a start to finding the right people to work on your husband.

Please add a signature when you can. It makes it much easier for us to help you when we have a brief history. Ive sent you a couple messages which have everything you need to make a signature and to make navigating the forum easier. Click on the tiny flashing envelope near the My Stuff tab.

Best wishes with everything!

I totally agree, Christine, that all dental related procedures should be considered medically required due to the cancer. I have argued and appealed that point after many thousands of dollars with no luck. Insurance is a blessing to have but it certainly can be a nightmare to deal with. When you say Marx Protocol is that in reference to the hyperbaric chamber? All these abbreviations/navigating are very confusing to me. I'll get the hang of it but computer lingo is not my thing.

Christine has been through it so I will simply welcome you and wish you luck...

Yes, the Marx Protocol is the HBO routine of having 20 dives before and 10 after a dental extraction or anything to do with the jaw. Its important for patients who have had radiation to do HBO in order to help reduce the chance of having bigger issues down the road.... osteoradionecrosis (ORN).

As far as the abbreviations go, the link I sent you has a list of our common abbreviations. It can also be found under the Frequently Asked Questions tab.