Floor of the mouth cancer

jane ellis

I was wondering if anyone has had this. My mom had neck dissection surgery taking a bone from her leg to re-create the jaw, and skin from her thigh to re-create the floor of the mouth. She had so many complications after the surgery (she's 76 & 83 pounds) with infections, etc. it took 5 months to get back to surgeons and pet scan, the cancer is back and we are going to try and treat it with radiation. Anyway, anyone have any advice - I feel all alone in NYC!

Thanks,
jane

soccerfreaks

Alone?
Jane, please be advised that you are not alone, at least insofar as there is a large digital support system right here at this very site.

If others have not responded to your post, it is probably because your mom DID have some rather extensive and creative surgery.

Personally, I had a radical neck dissection and reconstruction of the right side of my tongue. To replace that cancerous side of my tongue, they used muscle, tissue and nerves from my left arm, although they DID cut a patch of skin from my left thigh in the event they needed to use it instead. So I am at least familiar with that part of what your mom has gone through.

As for the jaw reconstruction, I cannot begin to imagine what that was like for mom.

In any event, following my surgery I was almost immediately sent for a combination of chemotherapy (4 rounds of cisplatin over many weeks) and seven weeks of daily radiation therapy. It sounds like, from your post, that mom was not up for this additional treatment, even if it was suggested.

That her cancer has returned is truly and obviously a problem. You do not mention where it has returned to, and you do not indicate the specific type of cancer.

It may not matter. If the doctors are going to do radiation therapy, they either have hope for success or, at the very least, hope that the rads will extend mom's life and give her more quality time with her family and friends. This is good news, Jane.

Accept it for what it is: good news in the midst of bad, and work with it.

I must assume that mom has a peg tube of some type for administering nutrition? If so, I would talk to a nutritionist about the best way to increase mom's weight and stamina and fitness as she leads into the radiation treatment. That would be a fundamental priority for me as a caregiver.

As mom endures the rads, I would be sure that she is treated daily, following treatment, with an anti-burning agent. I found Biafene to be very helpful (I believe it is now an over-the-counter medication), but others swear by Aquaphor and even natural aloe. Just be sure that whatever you use is NOT oil-based.

There are many previous posts about radiation and what people have done to prevent burning as well as get through the treatment experience itself.

You are not alone, Jane. Mom is not alone.

Best wishes to mom and her family.

Take care,

Joe

jane ellis

soccerfreaks said:

Alone?
Jane, please be advised that you are not alone, at least insofar as there is a large digital support system right here at this very site.

If others have not responded to your post, it is probably because your mom DID have some rather extensive and creative surgery.

Personally, I had a radical neck dissection and reconstruction of the right side of my tongue. To replace that cancerous side of my tongue, they used muscle, tissue and nerves from my left arm, although they DID cut a patch of skin from my left thigh in the event they needed to use it instead. So I am at least familiar with that part of what your mom has gone through.

As for the jaw reconstruction, I cannot begin to imagine what that was like for mom.

In any event, following my surgery I was almost immediately sent for a combination of chemotherapy (4 rounds of cisplatin over many weeks) and seven weeks of daily radiation therapy. It sounds like, from your post, that mom was not up for this additional treatment, even if it was suggested.

That her cancer has returned is truly and obviously a problem. You do not mention where it has returned to, and you do not indicate the specific type of cancer.

It may not matter. If the doctors are going to do radiation therapy, they either have hope for success or, at the very least, hope that the rads will extend mom's life and give her more quality time with her family and friends. This is good news, Jane.

Accept it for what it is: good news in the midst of bad, and work with it.

I must assume that mom has a peg tube of some type for administering nutrition? If so, I would talk to a nutritionist about the best way to increase mom's weight and stamina and fitness as she leads into the radiation treatment. That would be a fundamental priority for me as a caregiver.

As mom endures the rads, I would be sure that she is treated daily, following treatment, with an anti-burning agent. I found Biafene to be very helpful (I believe it is now an over-the-counter medication), but others swear by Aquaphor and even natural aloe. Just be sure that whatever you use is NOT oil-based.

There are many previous posts about radiation and what people have done to prevent burning as well as get through the treatment experience itself.

You are not alone, Jane. Mom is not alone.

Best wishes to mom and her family.

Take care,

Joe

Floor of the Mouth Cancer
Thank you Joe. I was having a dramatic moment, but nonetheless there is no one in my peer group to talk to! Ha! Must keep sense of humor. In a perfect world she would have had radiation 6 weeks post op, however the graft died they did a second op and put her on a heprin drip to keep the blood flow to the graft as they removed the right carotid artery in the first surgery so the left was the only one with the blood supply. Then the heprin caused a GI bleed. She was so weak she was moved to a long term care facility, because of the trach so many places would not take her, and she picked up pneumonia, a UTI, mrsa, C-diff and didn't come home for 5 months. We knew the cancer was agressive and would come back, but she would not have been strong enough for radiation. So, the good news is she is going to get radiation, the cancer came back on both sides of the neck, the floor of the mouth is clean - not sure about the chest if it's a tumor or infection. She will now also get chemo since the cancer is back. And it will extend her time and pain - and if one believes in miralces (we do)any thing is possible. She is getting her nutrion from the peg, but I did see her drink water for the first time yesterday. She failed one swallow test, but is working with a speech therapy and progressing.

Thanks for the tips about Biafene and Aquaphor and aloe - I'll keep you posted on how she makes out.

Thanks again for reaching out to me.

Best always,
Jane

PS - did you have a trach?

soccerfreaks

jane ellis said:

Floor of the Mouth Cancer
Thank you Joe. I was having a dramatic moment, but nonetheless there is no one in my peer group to talk to! Ha! Must keep sense of humor. In a perfect world she would have had radiation 6 weeks post op, however the graft died they did a second op and put her on a heprin drip to keep the blood flow to the graft as they removed the right carotid artery in the first surgery so the left was the only one with the blood supply. Then the heprin caused a GI bleed. She was so weak she was moved to a long term care facility, because of the trach so many places would not take her, and she picked up pneumonia, a UTI, mrsa, C-diff and didn't come home for 5 months. We knew the cancer was agressive and would come back, but she would not have been strong enough for radiation. So, the good news is she is going to get radiation, the cancer came back on both sides of the neck, the floor of the mouth is clean - not sure about the chest if it's a tumor or infection. She will now also get chemo since the cancer is back. And it will extend her time and pain - and if one believes in miralces (we do)any thing is possible. She is getting her nutrion from the peg, but I did see her drink water for the first time yesterday. She failed one swallow test, but is working with a speech therapy and progressing.

Thanks for the tips about Biafene and Aquaphor and aloe - I'll keep you posted on how she makes out.

Thanks again for reaching out to me.

Best always,
Jane

PS - did you have a trach?

Jane, I did have a trach while in the hospital. In retrospect I find it amusing that when I had to cough or sneeze, I would put my hand over my mouth, as I'd been taught to do as a child, while doctors and nurses would have to dodge the hail of phlegm shooting from the tube .

After the second time I removed the trach under the influence of what were clearly some wonderful drugs (codes required both times, as the nurses were nervous about reinserting it themselves due to the extensive nature of the surgery), one of my doctors decided I did not need it anymore and while he re-inserted it at the moment, he scheduled its permanent removal for the very next day.

Otherwise responding to your comments: your mom really has had a tough row to hoe! I admire her resolve and her courage! At the same time I salute you as a loving caregiver -- I personally think that you folks have a harder job than us survivors much of the time.

Hope and Humor!

Best wishes to mom and family.

Take care,

Joe

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