Hi Thelma,

Welcome to OCF and thank you for reaching out. I am sorry to hear of your difficulties in recovery. I had surgery (half tongue replaced) and radiation in 2020. It took many months for my tongue swelling to come down but not three years. It will never be normal again but what you are describing does sound like you should keep finding doctors to look at it.

Can you find another medical team to get a second opinion? Are you near MD Anderson? They are one of the most highly respected cancer centers.

Please keep us updated, stay safe, and keep the faith,
Nels

Hi Patrick,

Welcome to OCF and thank you for sharing your experience. I am sorry to hear of the difficulties in your recovery. Although I did not go through the same procedure (I had 50% of my tongue removed, rebuilt, and radiation, no chemo in 2020), I can share that my recovery took many months and food and flavors took years to come back. My saliva has never fully recovered. I do remember early months waking up with a completely dry mouth and it felt like my tongue was Velcro'd to the roof of my mouth.

Journaling, both written and video, helped me. I would get down thinking my recovery was not improving, then I would watch an old video or read my old entries and realize I had come a lot farther than I thought. I did have to learn to look month to month as I got further out from treatment.

Please keep us up to date, stay safe, and keep the faith.

Nels

Hi ChrisCQ,

Thank you for the reply. Yep that was me.

I actually have read through your posts a couple of times as it was one of the more detailed ones I could find about dysplastic situations. I appreciate you documenting it as it was very useful to see what others experiences have been with this.

That's kind of how I feel about this as well. I want to keep as much of my tongue as I can and since it could turn cancerous anyway, it's not a guarantee that surgery will help. It sucks because all cases evolve differently. They told me after the first biopsy they had no timeline for it getting worse if ever because it's different for everyone, but then I had recurrent pain and they did another biopsy and this time the results are severe vs moderate. Maybe that section has been worse for a while but it's hard to say if it has progressed in the last 4 months or if a different section was just worse than the other.

I did read about some of the trials. The annoying part for me is that I have been on metformin (one of the drugs they recommend) for over a decade due to PCOS. They also suggested low dose daily advil but that's about all. The current studies in my area are at capacity so I'm not able to join one but I do wonder what else they are testing. You're right. It is definitely a blind area when it comes to this. I also did ask about the laser treatment last time, actually due to your post, and they said they don't do that. I will ask again on Friday because I want to understand why she said no last time.

It is frustrating. I'm sorry you are dealing with this, too but thank you for the insights and reply.

God bless you and your angel brother. I appreciate your response. I have met with the social worker at Sloan and looked into American cancer society, cancer cares and every entity that I found. We earn too much to qualify. I am receiving social security. With the income of my wife, we don't qualify for assistance. I don't understand how people survive the financial impact of head and neck cancer due to the dental component. I need two separate surgeries. One for a spinal fusion since the tadiation fried by cervical bones and I already had my lower jaw replaced with my fibula. I need to figure out how I am going to be able to get through the surgeries before we lose our house. We have three kids we adopted through foster care that are special needs and a small ranch in Nj.

Anybody else go through this situation and were able to survive financially? I am blessed to be here to complain about this, I know and am grateful every day for the life that God has given me but when you can not afford to go out to the movies, or send thrn to a birthday party because we can't afford a gift, that's when I get depressed because my kids due without too.

Any ideas are appreciated. I can't locate anymore resources that I haven't applied to and been rejected. Thanks from the bottom of my heart and prayers for all of my fellow fighters.