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#50590 11-09-2003 03:31 AM
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patty G Offline OP
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Hello,
I am new to this forum.I discovered this site yesterday and I'm interested if there is anyone else on this site who has experience with oral malignant melanoma.My father in law has recently moved in with my family.He has a very large mass on his tongue.The biopsy results yielded a diagnosis of maliganant melanoma.With furthur testing we have discovered that it has spread to his hard and soft palate,his uvula and several lymph nodes in the head and neck region.He is having a peg tube inserted on Wednesday and surgery to follow the following Friday.The doctors tell us that this cancer is very rare and has a very poor prognosis.I have been the only one that has been caring for him and I'm extremely discouraged.I have received little information from all of his doctors and a little from the internet.Is there anyone out there who has any experience with this?I would welcome any insight that you may be able to give.
Thank you.


Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004
#50591 11-09-2003 03:48 AM
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Patty, welcome to this forum. Very sorry to hear about you father-in-law. Hopefully, someone will come along to post that has some experience with this type of cancer, but wanted to let you know that, if an experienced post is slow in coming, it is because the majority of the people here are dealing with squamous cell cancer (at least that is my sense). But there are many folks here that can empathize with your difficult role as caregiver. Take good care of yourself, too.

Anita


Husband Dx 12/02 Stage 4 Tonsil Cancer T1N2bM0; surgery, radiation, chemo 1/03 - 4/03.
#50592 11-09-2003 04:04 AM
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patty G Offline OP
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Anita,
Thank you for your reply.My next question should probably be do you or anyone else know of a web site that deals in this particular kind of cancer?All the sites that I have found just give the basic outlines of the medical portion.It has been very difficult to get a human perspective.Again I appreciate you taking the time to respond.


Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004
#50593 11-09-2003 05:17 PM
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Dear Patty,
I'm sorry that I can't provide information for you. But coming here may open doors. There are many caring people here who have extensive knowledge in cancer.

Mandi


Husband diagnosed with stage III tonsil and floor of mouth cancer in August 2002. Three rounds of chemo/42 RAD treatments. Upper right lung lobectomy in March 2003. (Benign)
#50594 11-10-2003 03:05 AM
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Patty,

First sorry to hear about your father-in-law and welcome to this forum, hopefully at least you can find moral support and kinship for the issues you have to deal with.

As Anita and Mandi mentioned, most of us here are dealing with squamus cell carcinoma as it is the most prevalent form of oral cancer.

That having been said, the best I can offer is my personal experience with scc and oral cancer, and my experience with my first wife who had malignant melanoma. Please understand, what I'm going to offer is a combination of the two experiences and is more anectdotal than based on medical training. Also, my experience with malignant melanoma was 10 years ago, and I'm sure there have been advances in treatment since then.

I would suspect the doctors treat this in two stages, first as any oral cancer would be treated with the surgery to the oral cavity and radical neck disection.

After that, depending on the pathology results, there may be a follow up with radiation and chemotherapy. This would be where the treatment differs. SCC is mostly treated with Cisplatin or Taxol. There are other chemo drugs in use for oral cancer and scc, but those are the ones I've seen mentioned the most. These are mostly used to help the radiation do it's job and not to cure the cancer on their own.

Malignant melonoma is treated with a different series of chemo drugs, tomoxifin (sp) being one of them, and the side effects of the chemo tends to be more severe. Reason for the severe side effects is this "cocktail" of drugs is supposed to be able to kill the cancer cells without the need for radiation. However, if the cancer is localized, still in the head and neck area, the oncologist will probably suggest radiation in addition to the chemo.

What I would do is badger the docs until you are satisfied with the information you get. They probably aren't going to give you percent chances of survival or not, mostly because they probably just don't know.

Hope this help at least a little. Guess the best thing is to research about the melanoma, then the oral cancer. You've probably come to the best resource on the oral cancer there is.
Bob S.


SCC Tongue, stage IV diagnosed Sept, 2002, 1st radical neck dissection left side in Sept, followed by RAD/Chemo. Discovered spread to right side nodes March 2003, second radical neck dissection April, followed by more RAD/Chemo.
#50595 11-10-2003 12:15 PM
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patty G Offline OP
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I want to thank you all from your encouraging words.He will be off to see the plastic surgeon tomorrow to talk about the reconstruction of his face.If it is not to painful to ask (Jet Age) can you share a little more about your operation and how much if any of your tongue was removed.


Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004
#50596 11-10-2003 03:31 PM
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patty.... I have sent you a private email with some information that I hope helps you. Oral melanomas are less than 2% of all oral cancer in the US. Please let me know if I can help you in any other way.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
#50597 11-11-2003 03:33 AM
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patty G Offline OP
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Brian,
I also responded with a private email.Thank you for all your effort.You have created a fantastic forum and I'm so glad I found this site!!!!


Caretaker of Joe,10/03 malignant melanoma of the tongue.
50% tongue removed,left radical neck dissection.11/03.Recurrence
to jaw and neck and multiple mets to major organs 1/2004

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