Dear Patty G,

I have visited this web site a few times with a friend and deceided to join today so I can respond to your posts.I am the person you've been looking for with your inquiries.My life partner Tony had oral malignant melanoma.I have a very hard time discussing this but since you seem to be in need of some additional info I am willing to help.


He developed a medium size lesion of his tongue 6 months prior to the actual diagnosis.He was a very stubborn man and refused to seek treatment for several months.He caved in only after he started having difficulty swallowing.As I'm sure in your case the actual biopsy results were a shock.You are exactly right in your assumptions that the medical field is not up to speed with oral melanoma.He was sent to Sloan Kettering in Manhattan for treatment.He saw a literal army of doctors.They scheduled him for surgery to remove the offending tumor along with countless parts of his mouth.I do not want to go into graphic detail due to your family members impending surgery.


I will say that what you have stated that your father in law is having done was very similar to his.The doctors all gave us the same retoric "we'll have to see what we find".Well, in his case it was quite a bit more extensive than what the test results showed.He remained in the hospital for nearly 2 1/2 weeks being brought back to the operating room several times.They waited for 4 weeks after surgery to start chem/rad procedures.Well to make this alot less painful for all he went through nearly 26 weeks of all these treatments before addtional tests showed mets to his brain and spine even with being nuked so often.He was taken from me on 8/8/03 after putting up a brave fight for 13 months.


I'm sorry if this scares you but since you are about to embark on this journey with your father I want you to ask as many questions as you feel is necessary.You hound then until your satisfied.I give all respect to the members of this board who have suffered with SCC but it is just not the same.I feel in the end that they used him as a lab rat to "learn".I want to make sure this doesn't happen to another person.I pray to god that your father is the one to beat this,but you stay on top of all these and doctors and question every test and procedure.I do have a very hard time talking about this but I will be here for you if you need help.May god bless you both.

Brandon

Brandon,
Thank you for your reply.Everything you said has just confirmed what I already thought.I hope that my father in law will also be the one to beat this.I have so many questions but I will not address them right now.I hope you will be willing to share when I can think of the proper way to say what I want to.Take care

MSKCC is one of the finest hospitals in the world for the treatment of all types of cancers, including oral melanoma. While doctors know a lot about the disease, they do not have a cure for it. It has a much higher death rate than SCC's. Melanoma of the external skin is also extremely deadly for the same reasons. While it is painful to loose someone you love to a disease, you can be assured that given the caliber of doctors at Memorial Sloan Kettering, and the strict controls which they work under, they did everything there was within their power to effect a cure. With this particular cancer, like so many diseases today, there is very little in the way of solutions to work with. Your perspective that they used him as a lab rat I find particularly cruel and demeaning to those that were trying to save his life. I know that given the numerous procedures that they likely tried in vain to effect a remission, that may have been perceived by you as experimenting, and must be the reason that you have made this statement. But would you have preferred that after the first thing they attempted did not produce the curative results they just stopped trying? Your pain and perhaps even anger over this loss is palpable, and I am sure that you have the sympathies of everyone here. But for some cancers there just is very little that can be done, even when they are caught early. Melanoma is one of them. We all are frustrated and hurt deeply when we lose someone we love, even after seeing them endure procedure after procedure and fight like hell for their lives. What I try to remember in those times is the amazing quality of their example of courage and strength that they have instilled in me and others by not going quietly into the night.....

I haven't posted for a while but I did want to chime in on this one. First off I offer my deepest sympathy for your loss. I have buried 2 of my friends who were diagnosed after I was. Your anger is completely understandable and a normal part of the grieving process.

My mother had melanoma on her arm and it was mind boggling how much flesh they had to remove to get it all. It is one particularly insidous, agressive and invasive cancer. I can only imagine how the doctors must have had their backs to the wall attempting to treat such an agressive rare cancer.

I do concur with Brian that, given a choice, I would have been treated at MSKCC. They are the gold standard for cancer treatment and research in the world.

We are all "lab rats" to some degree as the practice guidelines are constantly changing as well as medications and treatment devices/modalities. For many of us the best chance for survival is to deliberately seek out a clinical trial.

It is easy to forget that it is appropriately called medical "art" not "science".

It sounds like Tony fought the good fight. God bless him.

I'm going to address this forum directly since I've seemed to anger some of you.I never said he was not treated by some of the best doctors in the world!I am well aware that he was.I'm going to give a small taste of what he endured so that you can understand my position a little better.


When Tony was first diagnosed the cancer was localized to his tongue,soft palate and hard palate.All the ct's mri's and every other test he had showed no mets to any nodes nor had it metasized to any organ.They classified him at stage 1.This they said was great news since any mets with oral cancer lessens your chances greatly.We were assured since it had been caught earliy that he had a very good chance at a 70% remission rate.Only due to these recomendations did he proceed with the sugery.I must add that he had no other medical issues and was not a smoker.


He had surgery which orignally was just to remove the tumor and a 1/3 of his tongue,and small piece of his soft palate.He had a graft done to try to fill the void.Well as I'm sure which has happened with many of you the graft didn't take.He developed a staph infection.I am well aware that these are some of the effects from surgery.So onward on upward we went after 3 weeks in the hospital he was cleared to go home.He just began to get sicker,I told the doctors over and over again that he just wasn't right.I was told it was just his body responding to the surgery and infection.He lost nearly 60lbs(before chemo and rads).He had a peg but was just not gaining weight .

Now we are up to a month after surgery and the medical and radiation oncologists start their procedures.You all know what chemo and rad.does to you,but for him it seemed to be much worse.All the side effects from chemo seemed to be 10 fold.The doctors told me I was exagerating.I tell you I was not!!!Since I am not a medical professional we allowed them to continue their courses of treatment even though Tony begged me to stop.He wanted some quality of life if something was going to shorten his life quickly.Yet we were assured that this was the best way to go.I am not an ignorant man and I know they were trying to get it into remission.The problem I have is that during this whole time it was spreading all over his body and all he wanted was some peace.Well he never got any he suffered right until he took his last breath,so yes,maybe I am very angry.

I wanted just to give the young lady (patty) some heads up so when her father began treatment she wouldn't be as complacent as I was.You are all right that there isn't enough known about melanomas(oral or otherwise).So,I ask you do not judge me harshly I watched the man I love suffer and die before my eyes while he begged me to just leave him in peace.I thought if there was the slightest chance they could give me more time with him I would take it.So I guess in the end I am just angry at the loss of my beloved and I couldn't control it and I couldn't stop his suffering.I have come to the conclusion that sometimes it's worse being the care giver.You suffer every pain and ill with them and when their time to be in peace comes you are still left to ask why?

I wish good health and happiness to all.

Brandon.

Brandon,
I'm sorry if all this sharing has brought all these bad feelings and memories for you.I am very thankful that you took the time to share on my behalf.I've read all your posts and I don't believe I will need any addtional info from you.I have read many stories on this site regarding the hardships that both paitents and caregivers suffer through.It seems that you had a very difficult time with Tony's illness.It is very understandable that you are carrying this much anger around.I hope you will take heed to Brian's last post and not second guess yourself.I'm sure you did all you could for him as I'm sure his doctors did.I hope that you have a strong support structure it seems like you have alot of things you need to address.I wish you all the luck in the world,and I hope you relize you did all you could to help him and I'm sure he appreciated it.

Take care,
Patty

I wish to apologize if the tone of my last post has upset you. Even though I am a survivor, I cannot know the pain and anguish you are going through in dealing with your loss. I suspect that with 20/20 hindsight, that we all might approach the difficult situations in our lives from a new angle. It must have been extremely hard for you to be torn between the hopes of the medical team as they offered to try new procedures, and the desires of your partner to make choices. It certainly ended up being a thankless position to be in. My own fears, angers, and frustrations frequently and insidiously seep into my postings at times. Again I ask for your understanding, and your forgiveness for creating any hurt or uncomfortableness in you with my words. Clearly you came here to offer help and what I ended up saying was less than helpful.

Brandon,

Please accept my condolences on the loss of your loved one. It was very considerate of you to share your story in order to help others. I want you to know that I understand your anger. It sounds like Tony suffered a lot and that had to be excruciating for you as well as he.

I think I also can understand the ambivalence you must have felt. I know with Heather I wanted so desperately for the treatment to work enough for her to go into remission. But it was torture to watch her suffer so much. It was actually me who first asked her if she was ready to stop the chemo. At the time, I thought it was the right thing to do because I truly felt there was no hope left of even the slightest remission. Then, after she made the decision to stop, I had to ask her several times if she was sure because I couldn't stand the idea of losing her.

Letting her go was the hardest thing I have ever done in my entire life. I can not imagine anything that could be worse than telling a loved one that it is okay to let go of life.....except perhaps watching them continue to suffer. I wanted to keep her here, but I also wanted her to be free of the pain and suffering.

I also thought there was more going on than just side effects from surgery and RAD, but the docs didn't think so. They would say they hadn't seen anyone with as many problems as Heather had, but they never even suspected there was another tumor. It's sort of ironic. You were angry because you felt Tony was used as a lab rat. I was angry because Heather wasn't. She was treated the same as any other SCC patient, but she shouldn't have been. She didn't fit the profile and shouldn't have been treated as such. Well, I'm getting way off track. Sorry. I just wanted you to know that I think I understand at least partly how you feel and I am so sorry you and Tony had to go through so much pain. I hope you are able to move toward healing and peace.

Rainbows & hugs,
Rosie