Hi everyone

Its been about 4 months since I last posted here and a lot has happened with Scott's cancer.

I can write soooooooooooo much aboutit but I'll only write about the most important things that have occurred which lead to my questions.

Scott did 37 txs of radiation and was only able to do 3 tsx of chemo. We opted for the treatments in an effort to try to save his tongue, unfortunately, 5 days before the last radiation, his tongue turned black and nobody had ever seen anything like it before, it was not the black hairy tongue that is more common.

We saw the radiation oncoly team where he was being treated and they had no answers for us, the next day, his tongue "fell off" while he was brushing his teeth. The specimen was sent to patholy and they found it to be dead scar tissue, and a malignant cancerous tumor that the radiation and chemo had killed. It was nicrosis (sp).

This was so disappointing to us, the worst was not having anyone give us answers us to why this happened or to hear them say that they had never seen anything like that happen before.

Scott now has 1/3 of his tongue left but is dealing with a severe fungal infection that won't go away. The anti-biotic is no longer workin, he has been taking it for so long that he is now immune to it. They had prescribed Diflucan but won't do it again as they feel that the nacrosis in his tongue could have been from a severe reaction to this medication.

He is to have his biopsy done in the next 2 weeks but he will also need another procedure to scrape off the fungal infection that has spread all over his mouth. This infection generates incredible headaches for him. He is on a fentanyl patch but it barely helps.

If the results of the biopsy come back clean with no cancer, they have told us they can reconstruct using the portion that is left but if there is more cancer, they will have to remove the remaining part of his tongue and reconstruct the whole area.

He has a PEG tube and we have several questions about the reconstruction:

Will this help him to be able to eat again (soft foods)?

Will it help his speech?

How long is the reconstructive process?

How long is recovery?

Another problem we are having and have had since day 1 is getting the insurance company to approve his treatments.

How do we go about finding the best reconstruction specialist??

I know its a lot to ask but any information you can give us will be tremendous help.

Scott hs not worked since July of '05 and don't know for how much longer this will be the case. His last radiation treatment was on December 17th but his recovery has been tough and painful.

Thanks again
LILY

Hi Lilly,

My father might be having another glosectomy (1st one was a hemiglosectomy). This time they are taking a lot of the tongue and will be using muscel from his forearm to reconstruct a tongue for him...it is called a flap (something) but most dr.'s know what it is if you ask about a tongue flap.
That surgery is appx. 12 hrs. the majority (from what I am told) is dedicated to the reconstruction rather that cancer removel, due to the tedious nature of the vains etc...in the tongue.
I do not know if this is the type of surgery that your husbands doctor was speaking about but if it is I hope my info has helped.
In term of speech, mobility, etc...I am trying to locate those same answers for ny father.
I was told that as long as the tongue is "free" and mobile, then speech will be ok, that is, after speech therapy.
Best of luck!

Bianca B.

Lily, hope you are still checking in here. I know you have alot going on. I can only speak to the ins. issues here. You need to fight like hell with them. If Calif. has a State Ins. Commission, get on the phone with them and file a complaint. I had to do it [in Ark] and I won, and our INs. Company finally paid for everything I fought for.It wasn't a picnic-took 8 months and a hugh amount of energy, but our Docs were on our side and were willing to write letters, etc. Hang in there. Amy

Thanks for the responses. Unfortunately, this is no longer an option for us.

I will post the details of our last week later on on the general board. I don't quite have the energy or the state of mind to talk about it as I am still coming to terms with it but the details have to be known in hopes that it could help someone else.

thanks
LILY