does anyone have the same form of cancer?

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furkidsmom
furkidsmom Member Posts: 11
in Head and Neck Cancer #1
I have been dx'ed with metastatic Melanoma with no known primary. While I have gotten excellent info from some very caring and knowledgeable people here, I am wondering if there is anyone with the same type of cancer I have. I guess while not unheard of it is not very common. I would love to hear from someone in the same boat.

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  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #2
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    Did you try the skin cancer
    Did you try the skin cancer board? I did a search for you. Not sure if this would be helpful to you.

    METISTATIC MALIGNANT MELANOMA

    THIS ONE IS KIND OF AN OLD POST

    Try the skin cancer board:

    SKIN CANCER BOARD

    The skin cancer board doesnt look as active as this board, but, I am hoping that you will get to connect with someone that has your diagnosis. Good luck, sweetie.
  • Pam M
    Pam M Member Posts: 2,196
    #3
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    I'm With Sweet
    No knowledge of your cancer (thank goodness for me). I know we have at least one person on this board who had skin cancer. Hope you do well.
  • PatMiza
    PatMiza Member Posts: 10
    #4
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    Pam M said:

    I'm With Sweet
    No knowledge of your cancer (thank goodness for me). I know we have at least one person on this board who had skin cancer. Hope you do well.

    My mom has sinus cancer that
    My mom has sinus cancer that started deep in her forhead and spread all over to all her sinuses and then neck. the first chemo worked wonders quickly since she had lumps all over her face that disapeared after the first round. 1month of radiation to kill the beast, 3months later it's in her spin and possibly adrenal gland. super agressive and she was given a new chemo. this chemo was weak, didnt hurt her innerlinings, or remove her hair, very weak stuff in my opinion, after just one round of this new chemo the doctors say the cancer is growing even faster and they gave up. game over. since it was found to be reoccurant they knew they could only try to slow it down and not cure it. It is a very rare cancer of the sinus area that has only been found in children a handful number of times. It's so hard, because I can see the cancer eating her from the inside. it's starving her to death and causing so much pain due to its new location. its actually in a lot of bones now and may be affecting her blood cells. it's so sad to see how helpless medicine is now when it was so useful when she was first diagnosed. it's so hard for me to give up, but where I live we have someof the best cancer research/treatment institutes in the world and I feel like looking for other chemotherapies would be a waste. If it were up to me I would prefer to die battling the cancer with some experimental chemo than let the cancer do its thing. but my mom seems apathetic. god, I don't know. her family doctor told her before she got diagnosed with it that if the lump on her neck was cancer it didnt matter cause there is not much that can be done about cancer, her just take these antibiotics some more. she was treated days before the cancer strangled her brain. if she would have had a better family doctor maybe the cancer wouldnt have mutated into the immortal killer that it is now. I really feel like god is responsible for all this and I am also guilty. well there is my rant on head/neck cancer...

    question:
    if the first chemo was so effective why wouldnt some other chemo be able to help. I know the cancer is stronger now, but the doctor says they tried the best one there is, but do they really know that (group of cancer experts)? all these chemos are at least 10years old. the oncologist isnt really good at easing the concerns of the patient or family member, like he assumes we know little and just need to trust him.
  • Dav1965
    Dav1965 Member Posts: 132
    #5
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    PatMiza said:

    My mom has sinus cancer that
    My mom has sinus cancer that started deep in her forhead and spread all over to all her sinuses and then neck. the first chemo worked wonders quickly since she had lumps all over her face that disapeared after the first round. 1month of radiation to kill the beast, 3months later it's in her spin and possibly adrenal gland. super agressive and she was given a new chemo. this chemo was weak, didnt hurt her innerlinings, or remove her hair, very weak stuff in my opinion, after just one round of this new chemo the doctors say the cancer is growing even faster and they gave up. game over. since it was found to be reoccurant they knew they could only try to slow it down and not cure it. It is a very rare cancer of the sinus area that has only been found in children a handful number of times. It's so hard, because I can see the cancer eating her from the inside. it's starving her to death and causing so much pain due to its new location. its actually in a lot of bones now and may be affecting her blood cells. it's so sad to see how helpless medicine is now when it was so useful when she was first diagnosed. it's so hard for me to give up, but where I live we have someof the best cancer research/treatment institutes in the world and I feel like looking for other chemotherapies would be a waste. If it were up to me I would prefer to die battling the cancer with some experimental chemo than let the cancer do its thing. but my mom seems apathetic. god, I don't know. her family doctor told her before she got diagnosed with it that if the lump on her neck was cancer it didnt matter cause there is not much that can be done about cancer, her just take these antibiotics some more. she was treated days before the cancer strangled her brain. if she would have had a better family doctor maybe the cancer wouldnt have mutated into the immortal killer that it is now. I really feel like god is responsible for all this and I am also guilty. well there is my rant on head/neck cancer...

    question:
    if the first chemo was so effective why wouldnt some other chemo be able to help. I know the cancer is stronger now, but the doctor says they tried the best one there is, but do they really know that (group of cancer experts)? all these chemos are at least 10years old. the oncologist isnt really good at easing the concerns of the patient or family member, like he assumes we know little and just need to trust him.

    Sorry to hear that
    I guess i got lucky with my cancer team. My family doctor saw the cancer spot and sent me to specialist. The first 2 specialist i saw told me point blank that i needed better doctors than they were. They sent me to UNC Chapel Hill. If i were in your shoes i would look for a teaching hospital. I think that would give your mom the best and newest care possible. I think having trust in your doctors is a big part of the healing process. God bless you and your family. David
  • Pam M
    Pam M Member Posts: 2,196
    #6
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    PatMiza said:

    My mom has sinus cancer that
    My mom has sinus cancer that started deep in her forhead and spread all over to all her sinuses and then neck. the first chemo worked wonders quickly since she had lumps all over her face that disapeared after the first round. 1month of radiation to kill the beast, 3months later it's in her spin and possibly adrenal gland. super agressive and she was given a new chemo. this chemo was weak, didnt hurt her innerlinings, or remove her hair, very weak stuff in my opinion, after just one round of this new chemo the doctors say the cancer is growing even faster and they gave up. game over. since it was found to be reoccurant they knew they could only try to slow it down and not cure it. It is a very rare cancer of the sinus area that has only been found in children a handful number of times. It's so hard, because I can see the cancer eating her from the inside. it's starving her to death and causing so much pain due to its new location. its actually in a lot of bones now and may be affecting her blood cells. it's so sad to see how helpless medicine is now when it was so useful when she was first diagnosed. it's so hard for me to give up, but where I live we have someof the best cancer research/treatment institutes in the world and I feel like looking for other chemotherapies would be a waste. If it were up to me I would prefer to die battling the cancer with some experimental chemo than let the cancer do its thing. but my mom seems apathetic. god, I don't know. her family doctor told her before she got diagnosed with it that if the lump on her neck was cancer it didnt matter cause there is not much that can be done about cancer, her just take these antibiotics some more. she was treated days before the cancer strangled her brain. if she would have had a better family doctor maybe the cancer wouldnt have mutated into the immortal killer that it is now. I really feel like god is responsible for all this and I am also guilty. well there is my rant on head/neck cancer...

    question:
    if the first chemo was so effective why wouldnt some other chemo be able to help. I know the cancer is stronger now, but the doctor says they tried the best one there is, but do they really know that (group of cancer experts)? all these chemos are at least 10years old. the oncologist isnt really good at easing the concerns of the patient or family member, like he assumes we know little and just need to trust him.

    Goodness, PatMiza
    I can't believe your mom's doc said "it didn't matter cause there is not much that can be done about cancer". How horrible. Very sorry that doc didn't have the decency to refer her to someone more knowledgeable and caring. I was given antibiotics by the urgent care center that first saw my neck lump, but a month later, my family doc - while I was still in his exam room - had an appointment set up for me to see an ENT ASAP. DOn't recall if it was the same day or next. It's a nightmare to think that chemo that worked wonders for a time starts to become ineffective. Very sorry you're going through such hard times.
  • tesa
    tesa Member Posts: 123
    #7
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    Pam M said:

    Goodness, PatMiza
    I can't believe your mom's doc said "it didn't matter cause there is not much that can be done about cancer". How horrible. Very sorry that doc didn't have the decency to refer her to someone more knowledgeable and caring. I was given antibiotics by the urgent care center that first saw my neck lump, but a month later, my family doc - while I was still in his exam room - had an appointment set up for me to see an ENT ASAP. DOn't recall if it was the same day or next. It's a nightmare to think that chemo that worked wonders for a time starts to become ineffective. Very sorry you're going through such hard times.

    Pat Miza, where was your mom
    Pat Miza, where was your mom treated. My mother had sinus cancer and now it's in skull base...surgery cant be done, so i know what you're going through. I'm very distraught as well because chemo doesn't work well with her cancer...paranasal.

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