Recently diagnosed with metastatic melanoma facing Radical neck Dissection and have questions

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I have been dx'ed with metastatic melanoma which is baffling the Dr.s as it 1st showed up in a lymph gland. They are doing radical neck dissection at the end of the month followed by radiation and immunosuppressive therapy as they say my kind of melanoma does not respond to chemo. I know not to believe everything I read on the web but am interested in info on this surgery and others experiences. I believe in going into any situation armed with info so as not to be blindsided by anything. I am not sure what to expect following the surgery ie; recovery, and possible limitations, pain, eating etc. All I have been told is that the first week will be rough. And of course the Dr has to explain the 'worst case scenario'. Any feedback would be greatly appreciated as this has been quite the whirlwind in the last month since the original Dr visit for the huge lump on the right side of my neck.

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  • MarineE5
    MarineE5 Member Posts: 1,030 Member
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    Radical Neck Disection
    furkidsmom,

    I had a Radical Neck Disection done many years ago. Allot depends on the amount of Lymphnodes removed and any muscles that are removed as well. The pain will be managed by your pain med's. There will be some discomfort, but mine was not bad, I basically took motrin after returning home. The one thing you may have to deal with is the drain tubes that are placed there along the incision.

    I had to measure and empty the bottles for roughly 12 days. Many people here have had them for less time. It all depends on how you recover. Your neck will be a bit stiff for awhile but there are stretching exercises that you can do later on to loosen you neck movement once again.

    My Best to You and Everyone Here
  • Dav1965
    Dav1965 Member Posts: 132
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    My story
    I had double neck disection and it was not as bad as i had expected. I did not have much pain but i did not have to mess with the drains because i was in the hospital about a month after. They were out by the time i went home. They removed 95% of my tongue and gave me a trach. The only thing bothered me was the trach. For some reason i just could not get used to it. One thing to remember every body has diffeerent pain levals and you heal better if your not in pain. They would actually make me take pain meds when i did not really need it. They would talk me into it. David
  • furkidsmom
    furkidsmom Member Posts: 11
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    MarineE5 said:

    Radical Neck Disection
    furkidsmom,

    I had a Radical Neck Disection done many years ago. Allot depends on the amount of Lymphnodes removed and any muscles that are removed as well. The pain will be managed by your pain med's. There will be some discomfort, but mine was not bad, I basically took motrin after returning home. The one thing you may have to deal with is the drain tubes that are placed there along the incision.

    I had to measure and empty the bottles for roughly 12 days. Many people here have had them for less time. It all depends on how you recover. Your neck will be a bit stiff for awhile but there are stretching exercises that you can do later on to loosen you neck movement once again.

    My Best to You and Everyone Here

    drains
    Okay thanks guys for the info... no one told me about drains. My dr said a trach was probably not an issue for me. Unfortunately I have an unusually high tolerance to pain meds, I have morophine sulfate and it doesn't do anything. Can't take anything NSAID or aspirin related due to Gastric Bypass, which by the way exacerbates the anemia issue. Tylenol not good for the liver with the Hep C. What about swallowing and taste? And my Dr said my neck and top of shoulder on the surgery side will be permenantly numb..anyone experience this? And how bad is the scarring and did you have a 'dent' in your neck from the surgery. I have already had friends give me several wigs and long scarves to cover it up for awhile and the last time I took Interferon I did start to lose hair. I have also heard that radiation snywhere on your head area (neck up) is more apt to cause hair loss???
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
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    drains
    Okay thanks guys for the info... no one told me about drains. My dr said a trach was probably not an issue for me. Unfortunately I have an unusually high tolerance to pain meds, I have morophine sulfate and it doesn't do anything. Can't take anything NSAID or aspirin related due to Gastric Bypass, which by the way exacerbates the anemia issue. Tylenol not good for the liver with the Hep C. What about swallowing and taste? And my Dr said my neck and top of shoulder on the surgery side will be permenantly numb..anyone experience this? And how bad is the scarring and did you have a 'dent' in your neck from the surgery. I have already had friends give me several wigs and long scarves to cover it up for awhile and the last time I took Interferon I did start to lose hair. I have also heard that radiation snywhere on your head area (neck up) is more apt to cause hair loss???

    Drains
    furkidsmom,

    The drains are a way to relief the buildup of fluids along the incision. Depending on the skill of the Surgeon, he/she will try to make the incision look like an exsisting wrinkle of the neck. The drains remain only as long as there is fluid output. It gets measured by the Nurses while you are in the Hospital, and by you if you go home with them still in. Allot of people do not notice my scar and it is roughly 10 inches long. It starts at the top and back of my right ear, down along my neck and then swings back up to the middle of the bottom of my chin. A gaint fish hook ( J ) looking scar which can barely be seen.

    As far as permenantly being numb, at the beginning that is true, but as time passes, it does start to heal along the scar area as the nerves begin to regrow, you will actually feel what seems like little electrical shocks during the healing process. For me, it happened for nearly 2 years before it slowed down and only once in awhile I still get that little shock. Nothing to be alarmed about. My neck disection area is what I call semi-numb most of the time, I have some feeling along the neck. The dent will depend on how many Lymphnodes are removed and any muscle that might be taken as well. I had a Radical neck disection also, had over 30 lymphnodes removed along with some muscule, can't really notice it too much.

    Yes, to your question on the radiation. Allot depends on the range of the beam and where the target area is. The Physicist that maps the movement of the IMRT machine or other type of radition machine will determine how much hair loss there will be. If it is targeted around your neck area and jaw bone, your head hair should not be involved, maybe a little on the back of your neck if they go there. I started with a beard and it fell out. I still do not need to shave below my jaw bone/ neck area. My beard has returned though.

    My Best to You and Everyone Here
  • Goalie
    Goalie Member Posts: 184
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    Dav1965 said:

    My story
    I had double neck disection and it was not as bad as i had expected. I did not have much pain but i did not have to mess with the drains because i was in the hospital about a month after. They were out by the time i went home. They removed 95% of my tongue and gave me a trach. The only thing bothered me was the trach. For some reason i just could not get used to it. One thing to remember every body has diffeerent pain levals and you heal better if your not in pain. They would actually make me take pain meds when i did not really need it. They would talk me into it. David

    Dissection not as bad as I'd feared
    I finished my rads and chemo in December and in February had a modified neck dissection. The set-up scans were good and the tx had done its work but we still wanted to clean out the site. (I had had the tonsillectomy last August to clean out the inside primary tumor.)

    Neck dissection went well. The drains were pretty ugly (picture on my caringbridge site) but were out in three days once they stopped draining. Stitches came out a week later. Now, four months later, the scar is almost invisible as the swelling is all gone and he did follow the natural wrinkle. I have to stretch my neck and point to it for people to really know. Things are prety uneven since there is less real mass on that side where they took out 26 lymph nodes (all either clean or dead tumor. Yeah!) but there is still fluid build-up that kind of makes up for this. Without lymph nodes it doesn't drain right but this is slowly getting better with massages and such. So I have a wattle under my chin.

    I was lucky in that there was no cutting of nerves or muscles. He did have to push around the nerves to get to things but he said he didn't cut. 99% of the numbness which was from ear to chin is gone and there is just kind of a funny feeling in the ear lobe now. And I do have basically full mobillity of the head and neck which is pretty important as a goalie. I am back to playing three days a week.

    Yes, from the rads I temporarily lost all of the hair between my eyes and my shoulders. This included not only my beard but even nose hair and ear hair. The hairline was so much shorter in back that we left the hair long and just combed it down so as not to show. My chin was smooth as a baby's butt. By a couple of months later it was all coming back. On the neck itself there will never again be regular hair but a few random ones poke through. I have to shave my beard every few days now (not your problem, I know) and it is coming back fairly normally. Not a terrible experience but more of a curiosity.

    All in all, the tonsillectomy was the most painful but it did fade. The dissection was the most frightening and gross looking but within a couple of weeks was going. Rads and chemos, on the other hand, are another story for another time. They were not fun. Take this one at a time. You will be changed but you will survive. Let us help you. Doug
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    Neck dissection
    My lump was on my left side. Squamous Cell. Unknown primary. I had a modified radical neck dissection. It was way easier than radiation was for me. I have regained a lot of mobility in my left arm, after surgery I could barely get my arm straight and level with my shoulder. I can raise it so it hits my ear now, but that arm is very weak and the fingers on that hand are always numb. My neck mobility is very poor. It's very stiff and I am in pain and achy every day with my neck. I have a bit of paralysis left on my lower left lip, but it's way better than it was. I had my surgery in early January 2009.

    They did not give me any physical therapy. I would suggest that, highly recommend that. I did some on my own, but I don't think it was enough. Plus for me, the radiation made it even worse and wooden and even less mobility.

    I was in the hospital for 4-5 days. They let me go home after I got rid of my drains. I didn't realize that they weren't going to let me eat solids for a while. I was so damn hungry and cranky. I ate like a maniac when I got home. I think I lost 5 lbs in the hospital. They kept me in a intensive care type thing the first night to make sure I could breathe ok and stuff. I did take pain killers. I also had to sleep sitting up for a while.

    They took 23 lymph nodes and my left submandibular salivary gland.

    on 10/9/08 I found a tiny swollen lymph node. By December, when this picture was taken it was really big, but it got bigger than this until I finally had my surgery:

    WHAT I LOOKED LIKE BEFORE SURGERY my lump


    PHOTO OF MY NECK DISSECTION A DAY OR SO AFTER

    what I look like today:

    TOOK THIS PICTURE FRIDAY 6/10/11



    You can see a bit of pulling on my neck and some indentation. If you look close you can see the scar only a little bit there. I see my missing neck bits immediately. Along with the bit of paralysis and each little thing. My friends and family say they can hardly notice anything.

    Wishing you the best!

    Blessings,

    Sweet
  • furkidsmom
    furkidsmom Member Posts: 11
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    Neck dissection
    My lump was on my left side. Squamous Cell. Unknown primary. I had a modified radical neck dissection. It was way easier than radiation was for me. I have regained a lot of mobility in my left arm, after surgery I could barely get my arm straight and level with my shoulder. I can raise it so it hits my ear now, but that arm is very weak and the fingers on that hand are always numb. My neck mobility is very poor. It's very stiff and I am in pain and achy every day with my neck. I have a bit of paralysis left on my lower left lip, but it's way better than it was. I had my surgery in early January 2009.

    They did not give me any physical therapy. I would suggest that, highly recommend that. I did some on my own, but I don't think it was enough. Plus for me, the radiation made it even worse and wooden and even less mobility.

    I was in the hospital for 4-5 days. They let me go home after I got rid of my drains. I didn't realize that they weren't going to let me eat solids for a while. I was so damn hungry and cranky. I ate like a maniac when I got home. I think I lost 5 lbs in the hospital. They kept me in a intensive care type thing the first night to make sure I could breathe ok and stuff. I did take pain killers. I also had to sleep sitting up for a while.

    They took 23 lymph nodes and my left submandibular salivary gland.

    on 10/9/08 I found a tiny swollen lymph node. By December, when this picture was taken it was really big, but it got bigger than this until I finally had my surgery:

    WHAT I LOOKED LIKE BEFORE SURGERY my lump


    PHOTO OF MY NECK DISSECTION A DAY OR SO AFTER

    what I look like today:

    TOOK THIS PICTURE FRIDAY 6/10/11



    You can see a bit of pulling on my neck and some indentation. If you look close you can see the scar only a little bit there. I see my missing neck bits immediately. Along with the bit of paralysis and each little thing. My friends and family say they can hardly notice anything.

    Wishing you the best!

    Blessings,

    Sweet

    your pics
    Wow Sweet, your lump looked exactly like mine. The 2nd pic is a little intimidating, but the last one is beautiful. They did a lumpectomy the last week in may and the next one (The dissection) is the end of this month. The current incision has healed up pretty well although I can still feel the stitches. The bottom of my jaw on that side is still a little numb and it is still a little uncomfortable to lay on that side. I can still see a slight lump there but it doesn't look nearly as huge as the tumor did. I joked that I was going to paint a face on it, glue a tiny hat on it and run away and join the circus as 'the Incredible Two Headed Woman' either that or paint a nipple on it and it woud be the biggest boob I have. I throw humor at everything. I too seem to have an unknown primary. Strange, but then I pride myself on my uniqueness...hehehe I really appreciate your sharing with me as seeing your 1st pic and the similarity of our lumps makes me feel less alone in this. My amazing fiance bought me two huge recliners as we sorta figured sleeping sitting up was going to be necessary for awhile especially since I normally sleep on that side. I have a huge supply of Boost in the fridge as well as soft foods and an army of friends who are making and freezing soups for me to eat during this whole process.
    Again thanks for your sharing your story, as I said it really helps knowing someone else had such a similar beginning. =^..^=
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    your pics
    Wow Sweet, your lump looked exactly like mine. The 2nd pic is a little intimidating, but the last one is beautiful. They did a lumpectomy the last week in may and the next one (The dissection) is the end of this month. The current incision has healed up pretty well although I can still feel the stitches. The bottom of my jaw on that side is still a little numb and it is still a little uncomfortable to lay on that side. I can still see a slight lump there but it doesn't look nearly as huge as the tumor did. I joked that I was going to paint a face on it, glue a tiny hat on it and run away and join the circus as 'the Incredible Two Headed Woman' either that or paint a nipple on it and it woud be the biggest boob I have. I throw humor at everything. I too seem to have an unknown primary. Strange, but then I pride myself on my uniqueness...hehehe I really appreciate your sharing with me as seeing your 1st pic and the similarity of our lumps makes me feel less alone in this. My amazing fiance bought me two huge recliners as we sorta figured sleeping sitting up was going to be necessary for awhile especially since I normally sleep on that side. I have a huge supply of Boost in the fridge as well as soft foods and an army of friends who are making and freezing soups for me to eat during this whole process.
    Again thanks for your sharing your story, as I said it really helps knowing someone else had such a similar beginning. =^..^=

    Lol
    Well, I knew that second picture was going to be a little scary and that's why I wanted to make sure you saw I healed up ok. :)

    Sounds like you are preparing nicely.

    One thing that was great about this board, I figured out that there are, unfortunately, way too many people here that have or had the same stuff I have gone through and still go through.

    Do you have kitties? I am a mommie to a four legged a kid, except my boy is naked. Hairless Chinese Crested. :)
  • furkidsmom
    furkidsmom Member Posts: 11
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    Lol
    Well, I knew that second picture was going to be a little scary and that's why I wanted to make sure you saw I healed up ok. :)

    Sounds like you are preparing nicely.

    One thing that was great about this board, I figured out that there are, unfortunately, way too many people here that have or had the same stuff I have gone through and still go through.

    Do you have kitties? I am a mommie to a four legged a kid, except my boy is naked. Hairless Chinese Crested. :)

    hi
    Your posts really helped me put things in perspective and gave me a better idea of what is going to happen. Even though everyone is unique in their situation, it really helps to talk to someone who has 'been there done that' Yes I have 9 furkids. 4 white cats (3 of whom are turkish angora 2 of which are odd-eyed)a tortoishell, and 4 standard poodles. I was working at the Nebraska Humane Society and every time they got a white cat or a standard poodle in they would hunt me down. They 'let me go' after my 1st surgery as I couldn't do my specified duties (lift over 15 lbs). I plan to go back to volunteering there as long as I can until I come out the other side of this adventure and then try to get hired back. It was the best job I ever had and I am almost as upset about losing my job as I am about having cancer. I think it was kinda rotten what they did but I can see their point too. And my co-workers have really rallied to help me out and be supportive.
    I do have a question, friends want to stock me up with prepared homecooked meals for after the surgery. What sort of things will I be able to eat? They are planning soups and the like. I have a fridge full of Boost and Carnation Instant. Breakfast. Any other suggestions?
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    hi
    Your posts really helped me put things in perspective and gave me a better idea of what is going to happen. Even though everyone is unique in their situation, it really helps to talk to someone who has 'been there done that' Yes I have 9 furkids. 4 white cats (3 of whom are turkish angora 2 of which are odd-eyed)a tortoishell, and 4 standard poodles. I was working at the Nebraska Humane Society and every time they got a white cat or a standard poodle in they would hunt me down. They 'let me go' after my 1st surgery as I couldn't do my specified duties (lift over 15 lbs). I plan to go back to volunteering there as long as I can until I come out the other side of this adventure and then try to get hired back. It was the best job I ever had and I am almost as upset about losing my job as I am about having cancer. I think it was kinda rotten what they did but I can see their point too. And my co-workers have really rallied to help me out and be supportive.
    I do have a question, friends want to stock me up with prepared homecooked meals for after the surgery. What sort of things will I be able to eat? They are planning soups and the like. I have a fridge full of Boost and Carnation Instant. Breakfast. Any other suggestions?

    you would love it at my
    you would love it at my parents place, where i live. my step mom rescues cats. she has probably 20. they have their own little 2 story house, heated and cooled in summer. she has geese, ducks, an emu, two mini horses, a pony and one baby cross beteween the latter two, a ferret, fish, finches, doves, canaries, cockatiels, and all kinds of sqwaky chirpy birds, (not a bird lover), and then we have 5 people living there, and six dogs. one 135 lb rottie, one 200 lb english mastiff, 2 true hairless chinese crested, (one is mine), one hairy hairless crested, and one mini pincher.

    as far as the home cooked meals go, i am not sure. you are having immunosurpressive therapy or something like that, i think. i don't know what if any side effects there are from that. are you having chemo or radiation? i know having people cook for me is tricky in my current eating state. maybe be on the safe side and make sure it's things that are more bland, no salt or pepper or heavy spices. my theory there is that you can always add (more spice) but you cannot take away. soft foods are probably a safe bet to, but im not sure. i would stick to soups, made with low salt stock. home made broths with no salt would be better nutrtionally. my problem is that i seem to tell people i cannot have ANY salt or pepper, and they think they can put a little and i won't know. or i tell people i cannot swallow meat. the next thing i know i am looking in the bowl, and there is chicken in it. she said- i cooked it well, and chopped it small. i choked of course. in my head im thinking thank you for the little chunks of sawdust. :( i know people mean well. i think the boost and ensure are a good idea. if i had to do it over, i would have bought my healthmaster emulsifier blender sooner, so i may have been able to take in calories by mouth longer. plus i would have been able to make my own peg tube food,since i had my peg for 18 months.

    do you know what the possible side effects are from your treatment. what is that immuno therapy like?
  • furkidsmom
    furkidsmom Member Posts: 11
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    you would love it at my
    you would love it at my parents place, where i live. my step mom rescues cats. she has probably 20. they have their own little 2 story house, heated and cooled in summer. she has geese, ducks, an emu, two mini horses, a pony and one baby cross beteween the latter two, a ferret, fish, finches, doves, canaries, cockatiels, and all kinds of sqwaky chirpy birds, (not a bird lover), and then we have 5 people living there, and six dogs. one 135 lb rottie, one 200 lb english mastiff, 2 true hairless chinese crested, (one is mine), one hairy hairless crested, and one mini pincher.

    as far as the home cooked meals go, i am not sure. you are having immunosurpressive therapy or something like that, i think. i don't know what if any side effects there are from that. are you having chemo or radiation? i know having people cook for me is tricky in my current eating state. maybe be on the safe side and make sure it's things that are more bland, no salt or pepper or heavy spices. my theory there is that you can always add (more spice) but you cannot take away. soft foods are probably a safe bet to, but im not sure. i would stick to soups, made with low salt stock. home made broths with no salt would be better nutrtionally. my problem is that i seem to tell people i cannot have ANY salt or pepper, and they think they can put a little and i won't know. or i tell people i cannot swallow meat. the next thing i know i am looking in the bowl, and there is chicken in it. she said- i cooked it well, and chopped it small. i choked of course. in my head im thinking thank you for the little chunks of sawdust. :( i know people mean well. i think the boost and ensure are a good idea. if i had to do it over, i would have bought my healthmaster emulsifier blender sooner, so i may have been able to take in calories by mouth longer. plus i would have been able to make my own peg tube food,since i had my peg for 18 months.

    do you know what the possible side effects are from your treatment. what is that immuno therapy like?

    eating and other stuff
    Wow your Stepmom sounds like my kinda gal. If I could I would be just this side of a hoarder... but I am too responsible of a furmom to go that far...lol
    They have told me that my kind of melanoma does not respond to chemo so it is radiation and immunosupressive (interferon) therapy. I don't know in what order, am thinking maybe concurrently as the radiation is estimated for 7 weeks and the interferon for 1 year. I was on a drug combo tx for my Hep C., Ribavirin (pill) and Interferon (self injectable). The Interferon made me so anemic even after 2 weeks of rapid iron infusion, they had to stop the tx. I also had extreme fatigue and beginning hair loss from the Interferon. I have had some friends send me info on two new melanoma drugs they have been using in clinical trials that have had grest results with. When I finally get to the next person in the chain of dr.s i am going to ask about them. If there is an alternative to the Interferon I would like to know about it. I get frustrated with the waiting for info and learning just what my tx plan is going to be. I am currently dealing with the oncology surgeon, I am assuming until the surgical part of this is over, but I would like to talk to the Dr who is in charge of the following tx for this. I am a person of action and this waiting between things is maddening. plus then I get on the Web and start reading a bunch of stuff I probably don't need to scare myself with.
    Now as to food. Am I going to have trouble swallowing? And taste? You mention spices, salt and pepper. are they a problem? And I keep seeing a PEG tube mentioned, what is that? I had a temporary feeding tube put in following my Gastric bypass and also had a PIC line when I lost too much weight, but am not sure what a PEG tube is. Is it usual to need one? Do I understand you still have eating problems? Is it from the surgery or your follow up tx? Did you have chemo and radiation? What about taking meds, like pills/ how is that managed?
    Is a PEG tube put in (where) if you aren't getting enough nutrition? Do you have any hints or tricks to help? I really appreciate your help!
  • sue5749
    sue5749 Member Posts: 170
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    Dav1965 said:

    My story
    I had double neck disection and it was not as bad as i had expected. I did not have much pain but i did not have to mess with the drains because i was in the hospital about a month after. They were out by the time i went home. They removed 95% of my tongue and gave me a trach. The only thing bothered me was the trach. For some reason i just could not get used to it. One thing to remember every body has diffeerent pain levals and you heal better if your not in pain. They would actually make me take pain meds when i did not really need it. They would talk me into it. David

    track?
    How long did you have your track in? My husband has had his in for 5 months now. His new ENT doctor that he has seen took the old one out yesterday and put a new one in/ He said that he had a infection and he put him on antibiotics because he had a infection. He said that my husband should have never have had that track in for that long of a period. We were in Fl when all this started. Came back home to Mi found a new ENT, he did a biopsy also/ Will know this Tuesday the results. Sue
  • sweetblood22
    sweetblood22 Member Posts: 3,228
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    eating and other stuff
    Wow your Stepmom sounds like my kinda gal. If I could I would be just this side of a hoarder... but I am too responsible of a furmom to go that far...lol
    They have told me that my kind of melanoma does not respond to chemo so it is radiation and immunosupressive (interferon) therapy. I don't know in what order, am thinking maybe concurrently as the radiation is estimated for 7 weeks and the interferon for 1 year. I was on a drug combo tx for my Hep C., Ribavirin (pill) and Interferon (self injectable). The Interferon made me so anemic even after 2 weeks of rapid iron infusion, they had to stop the tx. I also had extreme fatigue and beginning hair loss from the Interferon. I have had some friends send me info on two new melanoma drugs they have been using in clinical trials that have had grest results with. When I finally get to the next person in the chain of dr.s i am going to ask about them. If there is an alternative to the Interferon I would like to know about it. I get frustrated with the waiting for info and learning just what my tx plan is going to be. I am currently dealing with the oncology surgeon, I am assuming until the surgical part of this is over, but I would like to talk to the Dr who is in charge of the following tx for this. I am a person of action and this waiting between things is maddening. plus then I get on the Web and start reading a bunch of stuff I probably don't need to scare myself with.
    Now as to food. Am I going to have trouble swallowing? And taste? You mention spices, salt and pepper. are they a problem? And I keep seeing a PEG tube mentioned, what is that? I had a temporary feeding tube put in following my Gastric bypass and also had a PIC line when I lost too much weight, but am not sure what a PEG tube is. Is it usual to need one? Do I understand you still have eating problems? Is it from the surgery or your follow up tx? Did you have chemo and radiation? What about taking meds, like pills/ how is that managed?
    Is a PEG tube put in (where) if you aren't getting enough nutrition? Do you have any hints or tricks to help? I really appreciate your help!

    Yeah my step mom is an
    Yeah my step mom is an animal lover.  Anyone who builds a separate two story house with a front and back porch for cats could be on the other side of hoarder.  All the animals get fixed and shots tho.  My niece is being raised by my parents.  She is starting college in the fall. She wants to be a vet and she has been working at the vet here for a few years now.  This family needs a vet for sure.  Lol

    So many questions!   I will try and answer, but some are good questions to ask your radiologist oncologist.  My RO seemed to be the guy I was in most contact with.  Still am.   

    I don't know if you saw the HNC Superthread on our board.  I would think that there is stuff in there that will be helpful to you.   There is a list of questions for your doctor that  can be a good starting point to make your own list.  It says something like HNC Superthread a collection of helpful links...

    There is info on radiation side effects and tips to handle some of those.  It has tons of links to answer and shed light on a lot of the questions you asked me.  I will try tho. (I think you need to ask your doctor these questions too)


    1.  Are you going To have trouble swallowing?   With the neck dissection they had me on liquids and jello and stuff like that for a few days.   I guess swallowing can be an issue afterward but I don't know why or exactly what the deal is because they didn't tell me about that.  All I knew was by the day after my surgery I was hungry and cranky and wanted food, but they wouldn't give me any.  

    As far as swallowing goes during and after radiation you will most likely be ok.  There aren't too many of us here that have long term swallowing issues, but there are a few.  I had my peg for 18 months.  There are a couple here that will always need theirs.   It will depend on where they radiate you.  It also depends on any pre existing conditions.  Two years before my cancer I had to have a stretching of my esophagus because my food was getting stuck and I could not eat properly.  

    I had an unknown primary, so I received a bigger dose of rads and it was over more area.   Because of that and a genetic blood disorder I have, my side effects were pretty wicked.   Others here have had radiation and it was not nearly as bad.  
    (my dental assistant asked me today when I finished radiation and where my cancer was.  She was looking at my tongue. When I told her two years ago I finished, she was shocked.  She said, "My God, really?  Your tongue looks awful".   So I am sort of a worst case scenario.  Most people heal up quickly from radiation and mucusitis. 

    2.  Taste?   If you have radiation to the head and neck area, it can effect your sense of smell and taste.  At first stuff just didn't taste right, sort of metallic and icky.  Then I lost all smell and taste for a while.  

    3. Spices- salt and pepper a problem??   Radiation can cause xerostomia  (extreme dry mouth)  and mucusitis.  Your mouth can get very sore and anything with pepper or very spicy burns your mouth.   Then some of us as we started to be able to eat again, savory foods taste overly salty.  I cannot eat prepared foods for that very reason.  They are so salty and burny it's just inedible to me.  

    4. PEG Tube is a tube placed directly into your stomach- actually they went down through my mouth and then popped it out my stomach, and it delivers liquid nutrition straight into your stomach.

    5. Is it usual to need a PEG tube?    There is always a debate here To Peg Or Not To Peg.  Some believe it should be standard for all patients receiving radiation for HNC.  Some believe no tube. The 'cruel to be kind' tactic, (so you dont lose your swallow) which since I would have died without my tube, I think that is stupid.    I did not have a lot of weight to lose.  None in fact.  I was the perfect height and weight for me going into treatment.  I was so ill and my side effects so bad that I lost 40 lbs and was down to 87 lbs.   My doctor did recommend one for me from the beginning.  I didn't want one - I wasn't going to do it, but every doctor I saw recommended one for me.  Then I thought about how I have never been able to eat well when stressed or ill, and so I decided to place the tube before radiation started to be proactive rather than reactive.   I made the right decision for sure.   So I am sort of pro peg tube but I think some people may be ok without one. I would say if a doctor recommends one, get one. You said something about gastric bypass so I have no clue how that effects you.

    6 &7  You asked about my eating problems, and I think I pretty much covered that.  Also, they removed my left salivary gland during my neck dissection and then radiation took out my right one.  I have severe dry mouth.  So that is also why eating is so difficult.   Dry mouth also causes problems for your teeth.  Of which I have plenty.  ($400 at dentist again today. Hope I'm done for a while)

    8.   I only had radiation, no chemo.  

    9.  Taking meds and pills, how are they managed?   Not sure what you mean here.   I cannot swallow pills at all.  I look for liquid meds.  When I had the tube, I put my pills thru that.  For pain during treatment I was on a fentanyl pain patch and liquid Roxicet.  

    10.  Hints and tips.  See the HNC superthread.  :)

    I wish I found this site before I started radiation.   I had no clue what the heck I was getting into.   

    Please feel free to ask anything else.  Definitely cover these things with your RO, as I have no idea where you are having the radiation and your side effects will really depend on that.   And remember that everyone is different and you may sail through your treatment.

    Blessings ~
    sweet
  • furkidsmom
    furkidsmom Member Posts: 11
    Options

    Yeah my step mom is an
    Yeah my step mom is an animal lover.  Anyone who builds a separate two story house with a front and back porch for cats could be on the other side of hoarder.  All the animals get fixed and shots tho.  My niece is being raised by my parents.  She is starting college in the fall. She wants to be a vet and she has been working at the vet here for a few years now.  This family needs a vet for sure.  Lol

    So many questions!   I will try and answer, but some are good questions to ask your radiologist oncologist.  My RO seemed to be the guy I was in most contact with.  Still am.   

    I don't know if you saw the HNC Superthread on our board.  I would think that there is stuff in there that will be helpful to you.   There is a list of questions for your doctor that  can be a good starting point to make your own list.  It says something like HNC Superthread a collection of helpful links...

    There is info on radiation side effects and tips to handle some of those.  It has tons of links to answer and shed light on a lot of the questions you asked me.  I will try tho. (I think you need to ask your doctor these questions too)


    1.  Are you going To have trouble swallowing?   With the neck dissection they had me on liquids and jello and stuff like that for a few days.   I guess swallowing can be an issue afterward but I don't know why or exactly what the deal is because they didn't tell me about that.  All I knew was by the day after my surgery I was hungry and cranky and wanted food, but they wouldn't give me any.  

    As far as swallowing goes during and after radiation you will most likely be ok.  There aren't too many of us here that have long term swallowing issues, but there are a few.  I had my peg for 18 months.  There are a couple here that will always need theirs.   It will depend on where they radiate you.  It also depends on any pre existing conditions.  Two years before my cancer I had to have a stretching of my esophagus because my food was getting stuck and I could not eat properly.  

    I had an unknown primary, so I received a bigger dose of rads and it was over more area.   Because of that and a genetic blood disorder I have, my side effects were pretty wicked.   Others here have had radiation and it was not nearly as bad.  
    (my dental assistant asked me today when I finished radiation and where my cancer was.  She was looking at my tongue. When I told her two years ago I finished, she was shocked.  She said, "My God, really?  Your tongue looks awful".   So I am sort of a worst case scenario.  Most people heal up quickly from radiation and mucusitis. 

    2.  Taste?   If you have radiation to the head and neck area, it can effect your sense of smell and taste.  At first stuff just didn't taste right, sort of metallic and icky.  Then I lost all smell and taste for a while.  

    3. Spices- salt and pepper a problem??   Radiation can cause xerostomia  (extreme dry mouth)  and mucusitis.  Your mouth can get very sore and anything with pepper or very spicy burns your mouth.   Then some of us as we started to be able to eat again, savory foods taste overly salty.  I cannot eat prepared foods for that very reason.  They are so salty and burny it's just inedible to me.  

    4. PEG Tube is a tube placed directly into your stomach- actually they went down through my mouth and then popped it out my stomach, and it delivers liquid nutrition straight into your stomach.

    5. Is it usual to need a PEG tube?    There is always a debate here To Peg Or Not To Peg.  Some believe it should be standard for all patients receiving radiation for HNC.  Some believe no tube. The 'cruel to be kind' tactic, (so you dont lose your swallow) which since I would have died without my tube, I think that is stupid.    I did not have a lot of weight to lose.  None in fact.  I was the perfect height and weight for me going into treatment.  I was so ill and my side effects so bad that I lost 40 lbs and was down to 87 lbs.   My doctor did recommend one for me from the beginning.  I didn't want one - I wasn't going to do it, but every doctor I saw recommended one for me.  Then I thought about how I have never been able to eat well when stressed or ill, and so I decided to place the tube before radiation started to be proactive rather than reactive.   I made the right decision for sure.   So I am sort of pro peg tube but I think some people may be ok without one. I would say if a doctor recommends one, get one. You said something about gastric bypass so I have no clue how that effects you.

    6 &7  You asked about my eating problems, and I think I pretty much covered that.  Also, they removed my left salivary gland during my neck dissection and then radiation took out my right one.  I have severe dry mouth.  So that is also why eating is so difficult.   Dry mouth also causes problems for your teeth.  Of which I have plenty.  ($400 at dentist again today. Hope I'm done for a while)

    8.   I only had radiation, no chemo.  

    9.  Taking meds and pills, how are they managed?   Not sure what you mean here.   I cannot swallow pills at all.  I look for liquid meds.  When I had the tube, I put my pills thru that.  For pain during treatment I was on a fentanyl pain patch and liquid Roxicet.  

    10.  Hints and tips.  See the HNC superthread.  :)

    I wish I found this site before I started radiation.   I had no clue what the heck I was getting into.   

    Please feel free to ask anything else.  Definitely cover these things with your RO, as I have no idea where you are having the radiation and your side effects will really depend on that.   And remember that everyone is different and you may sail through your treatment.

    Blessings ~
    sweet

    Your info
    Thank you so much for the info and the Superthread suggestion. I am still trying to negotiate this site and wasn't sure what a Superthread was. I got a ton of info from it and am a little less unsure about the upcoming surgery. I guess I let my fears and imagination run away with me. Now I feel a little better 'armed' to go into this. Don't have an RO yet the only person I have met with is the surgeon and he is rather no nonsense for me but is supposedly the best. I do not have a 'rest of the tx info yet other than I am going to have radiation and immunosuppressive therapy. This lack of info on that is maddening but I am thinking that until the surgery is done they won't know for sure. I am thinking the Radiation will be on the area on the right side of my neck where the cancer is. yesterday my fiance took me shopping for some button up shirts to make dressing easier post surgery. I am curious about the arm weakness and driving as I drive a stick, and have to angle a tight spot to back out of my garage to avoid hitting the house. at least it is summer and I can park in front on the street. But as you and others have said, every one is unique in their tx so I guess I just have to wait and see. Again Sweet, thanks for the info I feel comfortable talking to you as you seem to have had the same kind of melanoma as I do and are extremely knowledgeable.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Options

    Your info
    Thank you so much for the info and the Superthread suggestion. I am still trying to negotiate this site and wasn't sure what a Superthread was. I got a ton of info from it and am a little less unsure about the upcoming surgery. I guess I let my fears and imagination run away with me. Now I feel a little better 'armed' to go into this. Don't have an RO yet the only person I have met with is the surgeon and he is rather no nonsense for me but is supposedly the best. I do not have a 'rest of the tx info yet other than I am going to have radiation and immunosuppressive therapy. This lack of info on that is maddening but I am thinking that until the surgery is done they won't know for sure. I am thinking the Radiation will be on the area on the right side of my neck where the cancer is. yesterday my fiance took me shopping for some button up shirts to make dressing easier post surgery. I am curious about the arm weakness and driving as I drive a stick, and have to angle a tight spot to back out of my garage to avoid hitting the house. at least it is summer and I can park in front on the street. But as you and others have said, every one is unique in their tx so I guess I just have to wait and see. Again Sweet, thanks for the info I feel comfortable talking to you as you seem to have had the same kind of melanoma as I do and are extremely knowledgeable.

    You are most welcome for all the info, but...
    Just to be clear, we do not have the same diagnosis. Which is why I do not know about the immunosupressive therapy or much about melanoma. I had Squamous Cell Carcinoma Stage Four, unknown primary.

    My surgeon was my ENT as well. Definitely cover questions about whether the surgery can or will affect your arm, I also have some paralysis on my lower left lip, don't know if I mentioned that. It isn't as bad as it was when I was first operated on. Less numbness as well. I am hoping some one else with your diagnosis can help you more. I don't believe we have some one here with the same thing, but there are a lot of people to keep track of here. New people join all the time, so you never know.

    Button up shirts was an excellent idea! You're a smart cookie. I had my shirt stuck on my left arm and head one day and had to get my step mom for help. Why didn't I think of that. Lol.
  • Goalie
    Goalie Member Posts: 184
    Options

    Your info
    Thank you so much for the info and the Superthread suggestion. I am still trying to negotiate this site and wasn't sure what a Superthread was. I got a ton of info from it and am a little less unsure about the upcoming surgery. I guess I let my fears and imagination run away with me. Now I feel a little better 'armed' to go into this. Don't have an RO yet the only person I have met with is the surgeon and he is rather no nonsense for me but is supposedly the best. I do not have a 'rest of the tx info yet other than I am going to have radiation and immunosuppressive therapy. This lack of info on that is maddening but I am thinking that until the surgery is done they won't know for sure. I am thinking the Radiation will be on the area on the right side of my neck where the cancer is. yesterday my fiance took me shopping for some button up shirts to make dressing easier post surgery. I am curious about the arm weakness and driving as I drive a stick, and have to angle a tight spot to back out of my garage to avoid hitting the house. at least it is summer and I can park in front on the street. But as you and others have said, every one is unique in their tx so I guess I just have to wait and see. Again Sweet, thanks for the info I feel comfortable talking to you as you seem to have had the same kind of melanoma as I do and are extremely knowledgeable.

    Crucial Questions
    While your dx is somewhat different from most of ours you would still benefit from the discussion we had a couple of weeks ago about the ~35 questions you ought to ask your docs. I can look for this thread as can you. This was a really good collaborative effort. Doug
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Options
    Goalie said:

    Crucial Questions
    While your dx is somewhat different from most of ours you would still benefit from the discussion we had a couple of weeks ago about the ~35 questions you ought to ask your docs. I can look for this thread as can you. This was a really good collaborative effort. Doug

    Questions for your doctor.
    Doug, I stuck it on the superthread last week. . (for future reference)
  • lindylee48
    lindylee48 Member Posts: 1
    Options
    Husband has just been diagnosed with metastatic melanoma
    Hi my husband has just been diagnosed with metastatic melanoma in his right neck lymph nodes. So far it is unknown where the primary cancer is as he has no melanoma on his skin. I have been reading your posts from a year ago and was wondering how you are doing and how surgery and treatment was. His surgery is next week June 6th and he is having a PETscan on June 4th. If you are still reading posts here it would help me a lot to know what to expect in next few weeks.

    If anyone else can help me out also it would be very much appreciated
  • KTeacher
    KTeacher Member Posts: 1,103
    Options

    Husband has just been diagnosed with metastatic melanoma
    Hi my husband has just been diagnosed with metastatic melanoma in his right neck lymph nodes. So far it is unknown where the primary cancer is as he has no melanoma on his skin. I have been reading your posts from a year ago and was wondering how you are doing and how surgery and treatment was. His surgery is next week June 6th and he is having a PETscan on June 4th. If you are still reading posts here it would help me a lot to know what to expect in next few weeks.

    If anyone else can help me out also it would be very much appreciated

    This thread
    will give you a lot of information about the surgery and what to expect after. Glad you looked us up, sorry you had to find us this way. Most of us have squamous cell cancers but it sounds like the surgery would be the same. You might also look at the skin cancer board for more info on melanoma