Unkown Survivors!

Irishgypsie
Irishgypsie Member Posts: 333
edited April 2012 in Head and Neck Cancer #1
Hello, I am coming up on 1 year and 10 months post treatment and have my scheduled scope next week; as usual I tend to get a little cranky and down at this time; especially today for some reason? Fortunately though, I recently came across an unexpected surprise that is helping me get through this emotional day. I am a registered nurse at a government installation and I came across an unexpected surprise, I was looking through a new patients chart and it showed that he was a head and neck survivor from Dec. 2003. He was diagnosed stage 3 T1N1MO. Had tumor removed from tonsillary bed and had bilateral neck resection. He also had the standard radiation with 3 doses of cisplatin. I brought him down to the clinic and asked him a few questions about how he was doing this far out. He has the expected dry mouth still; especially at night; as a result he does have pretty bad tooth decay, but no history of osteonecrosis!! But I also could see by his history that he didn't keep very good oral hygiene. He didn't have much neck pain, however he recently has been diagnosed with Right carotid stenosis, most likley from radiation (SO Beware). His Thyroid panel was normal still:) I didn't bring up the whole HPV thing since they didn't test for it back then; but he did say that he drank and smoked alot before. Current AGE: 58

Overall, it was nice to see a fellow oral cancer patient walking around after almost 10 years. Also, tells me there are alot more survivors out there than are on these boards!! :)

Charles

Comments

  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    plus
    thought i would share, i had standard radiation, three rounds of chemo that was 24 hours per day for 5 days in the hospital every three week at the same time as my 38 radiation treatments. waited 9 weeks and had surgery to remove what was left wrapped around my carotid.

    that was 1993, hope that helps you more as you wait for for your scope and results. congrats on your 22 month survivorship.

    john
  • ditto1
    ditto1 Member Posts: 660
    fisrpotpe said:

    plus
    thought i would share, i had standard radiation, three rounds of chemo that was 24 hours per day for 5 days in the hospital every three week at the same time as my 38 radiation treatments. waited 9 weeks and had surgery to remove what was left wrapped around my carotid.

    that was 1993, hope that helps you more as you wait for for your scope and results. congrats on your 22 month survivorship.

    john

    HOPE
    Thank you both, yes its good to hear these stories, I just have to remember no matter how long its been, it all came one day at a time.
  • RogerRN43
    RogerRN43 Member Posts: 185
    Thanks Charles
    I was feeling a little moody and down today, and your post gave me a lift.
    It must make you feel really good too to meet someone like that in person.

    I wonder why he got a bilateral ND considering he was only N1. Sounds like from T1N1M0, he had a small primary and one small encapsulated node. I'm surprised field catheterization didn't occur due to his history of smoking and drinking. Good for him and his survivorship, I hope he has many years to go. He escaped ORN and thyroid troubles this long too. I have read about carotid stenosis occurring years down the road and stents being the fix.

    I think we forget sometimes that not everyone is on the net posting or blogging especially older people. Popularized social media really hasn't been around that long.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Charles - My Brother....
    Yoo Charles....

    Like you, I had a similar expereince a year or so ago....of course in relation to fishing.

    I was at the ramp cleaning up my boat after a day of fishing. Shooting the breeze with an older fellow also cleaning up his boat...

    Anyways, somehow we got on the subject of throat cancer...he had been a survivor of 12 plus years at the time as well...

    Still crankin around, and even better, still puttin fish in the boat...news to my ears, LOL.

    Best,
    John
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    Skiffin16 said:

    Charles - My Brother....
    Yoo Charles....

    Like you, I had a similar expereince a year or so ago....of course in relation to fishing.

    I was at the ramp cleaning up my boat after a day of fishing. Shooting the breeze with an older fellow also cleaning up his boat...

    Anyways, somehow we got on the subject of throat cancer...he had been a survivor of 12 plus years at the time as well...

    Still crankin around, and even better, still puttin fish in the boat...news to my ears, LOL.

    Best,
    John

    Dude, I'm not an older fellow
    yet I'm just about to celebrate my 14th year anniversary. Well, maybe I am an older fellow. certainly older than I was.....
  • Greend
    Greend Member Posts: 678
    fisrpotpe said:

    plus
    thought i would share, i had standard radiation, three rounds of chemo that was 24 hours per day for 5 days in the hospital every three week at the same time as my 38 radiation treatments. waited 9 weeks and had surgery to remove what was left wrapped around my carotid.

    that was 1993, hope that helps you more as you wait for for your scope and results. congrats on your 22 month survivorship.

    john

    long time
    I thought we were near the same treatment dates....you have me beat by three years.

    Denny
  • mls351w
    mls351w Member Posts: 90
    survivor
    Did not drink or smoke. Developed stage 3-4 squamous cell carcinoma on base of tongue in late 2005. Had 2 wisdom teeth removed. Started treatment May 2006. 2 weeks of 24hr chemo and 40 radiation treatments. Surgery to remove 5 lymphnodes in November. Middle one was cancerous.
    Last November was 5 years. Now getting head/throat/chest/lower abdomen CT scans and exam once a year. Go to specialized dentist 3 times a year.
    Absolutely no side effects other than slightly dry mouth in winter at night. No problems with taste(in fact I think food tastes better). Side of neck has no feeling due to nerves cut during surgery. As my rad onchologist says, I am the poster child for this affliction. No teeth issues, but before treatment started, I went on a strict dental hygiene process. I brush, use a tongue brush, rinse with mouth wash(non alcholic),and floss after EVERY meal, and use flouride trays each night. I use to floss twice a year (when getting my teeth cleaned). I have followed this procedure and have had no tooth/gum decay or related issues. In fact my teeth are in better shape than before treatment.
    Yes, only the bad stories seem to get told and you hear little about the sucsessful ones.
    I count my blessings because I know alot of patients that have never recovered close to the extent that I have. I will be 59 years old in May.
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    mls351w said:

    survivor
    Did not drink or smoke. Developed stage 3-4 squamous cell carcinoma on base of tongue in late 2005. Had 2 wisdom teeth removed. Started treatment May 2006. 2 weeks of 24hr chemo and 40 radiation treatments. Surgery to remove 5 lymphnodes in November. Middle one was cancerous.
    Last November was 5 years. Now getting head/throat/chest/lower abdomen CT scans and exam once a year. Go to specialized dentist 3 times a year.
    Absolutely no side effects other than slightly dry mouth in winter at night. No problems with taste(in fact I think food tastes better). Side of neck has no feeling due to nerves cut during surgery. As my rad onchologist says, I am the poster child for this affliction. No teeth issues, but before treatment started, I went on a strict dental hygiene process. I brush, use a tongue brush, rinse with mouth wash(non alcholic),and floss after EVERY meal, and use flouride trays each night. I use to floss twice a year (when getting my teeth cleaned). I have followed this procedure and have had no tooth/gum decay or related issues. In fact my teeth are in better shape than before treatment.
    Yes, only the bad stories seem to get told and you hear little about the sucsessful ones.
    I count my blessings because I know alot of patients that have never recovered close to the extent that I have. I will be 59 years old in May.

    mls
    Thank you so much for your positive story!!! It gives me great courage. I'm having my "consult" appointment Wednesday and have been so scared to get started on this journey!

    I believe in another post you mentioned about injections before your rads? And also, I notice your dental procedures and I'm sure that had a profound effect on that sucess. Did you have any hair loss at all?

    Thanks again!!!
  • mls351w
    mls351w Member Posts: 90

    mls
    Thank you so much for your positive story!!! It gives me great courage. I'm having my "consult" appointment Wednesday and have been so scared to get started on this journey!

    I believe in another post you mentioned about injections before your rads? And also, I notice your dental procedures and I'm sure that had a profound effect on that sucess. Did you have any hair loss at all?

    Thanks again!!!

    Mrs. Sarge
    You are going to go through a lot of trials. But you have to stay positive. First, make sure someone goes with you Wednesday. There is so much info thrown at you that you cannot retain all of it. Luckily, my wife could go with me on every trip I made for pre-treatment and all treatment sessions. I wasn't in a very good frame of mind, and things my rad onc said went in one ear and out the other. But my wife, bless her, caught it all.
    The injections were Amifostine. Very expensive, but luckily my insurance paid for it. They were $1500.00 per injection. I took a pill 30 minutes before the injection to keep me from becoming nauseous and the injection(in the stomach with a very short needle)30 minutes before the radiation. It seemed to work beyond all expectations as I have normal saliva functions. I had always drooled at night on my pillow and now I am at a "normal" level.
    I went to a dentist before treatment started and he removed my last 2 wisdom teeth. I had been told that if you ever have to have an extraction, it may cause serious issues. The socket might not ever heal and the jaw can split and break. This is due to the radiation. So, needless to say, I followed all dental recommendations with great zeal. I started my dental hygiene before treatment started. After every meal I brushed, brushed my tongue(very important), used mouthwash, flossed, and at night used flouride carriers. I still perform this procedure after 5 years.
    I was bald before chemo, but I did not lose any of my hair. It did go from gray to gray and black, so it is darker now than before.
    There are people not as fortunate as I, but I feel that success stories are out there, you just can't find them as easily as the bad. You will get through this. I had so much support from family and friends and people from all over that didn't even know me.
    Good luck and best wishes. Let me know if I can help you in any way.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    mls351w said:

    Mrs. Sarge
    You are going to go through a lot of trials. But you have to stay positive. First, make sure someone goes with you Wednesday. There is so much info thrown at you that you cannot retain all of it. Luckily, my wife could go with me on every trip I made for pre-treatment and all treatment sessions. I wasn't in a very good frame of mind, and things my rad onc said went in one ear and out the other. But my wife, bless her, caught it all.
    The injections were Amifostine. Very expensive, but luckily my insurance paid for it. They were $1500.00 per injection. I took a pill 30 minutes before the injection to keep me from becoming nauseous and the injection(in the stomach with a very short needle)30 minutes before the radiation. It seemed to work beyond all expectations as I have normal saliva functions. I had always drooled at night on my pillow and now I am at a "normal" level.
    I went to a dentist before treatment started and he removed my last 2 wisdom teeth. I had been told that if you ever have to have an extraction, it may cause serious issues. The socket might not ever heal and the jaw can split and break. This is due to the radiation. So, needless to say, I followed all dental recommendations with great zeal. I started my dental hygiene before treatment started. After every meal I brushed, brushed my tongue(very important), used mouthwash, flossed, and at night used flouride carriers. I still perform this procedure after 5 years.
    I was bald before chemo, but I did not lose any of my hair. It did go from gray to gray and black, so it is darker now than before.
    There are people not as fortunate as I, but I feel that success stories are out there, you just can't find them as easily as the bad. You will get through this. I had so much support from family and friends and people from all over that didn't even know me.
    Good luck and best wishes. Let me know if I can help you in any way.

    You Got a Pill....
    How lucky is that, LOL....

    Just teasing, I also had the injections in the stomach 15 minutes or so before each rad session...no pill though. But I didn't really get nauseous, I would get an itchy welt there for a few days. So they would move the injections around to different areas each day.

    My stomach looked like it was being used as target practice for a hice of hornets, LOL.

    I remember my last day, they drew a big smily face on my tummy before going down to rads..too funny.

    My injections were in the neighborhood of $150/day.

    Sarge, I did lose all hair..., I'm talking totally ALL hair on my body. Somewhere around the 2nd round of chemo (Cisplatin, Taxotere and 5FU). But...it did start growing back rather quickly, even though I still had another full round of chemo, then seven weekly doses of Carboplatin.

    The only section that I didn't have hair grow back was a small strip at the base of my neck in the back, and most of my beard under my chin...which is good for not shaving there, LOL.

    Now what was a little weird and cracked my wife an I up. When I did start getting my hair back, it was like going through puberty again, LOL....

    Best,
    John
  • mls351w
    mls351w Member Posts: 90
    Skiffin16 said:

    You Got a Pill....
    How lucky is that, LOL....

    Just teasing, I also had the injections in the stomach 15 minutes or so before each rad session...no pill though. But I didn't really get nauseous, I would get an itchy welt there for a few days. So they would move the injections around to different areas each day.

    My stomach looked like it was being used as target practice for a hice of hornets, LOL.

    I remember my last day, they drew a big smily face on my tummy before going down to rads..too funny.

    My injections were in the neighborhood of $150/day.

    Sarge, I did lose all hair..., I'm talking totally ALL hair on my body. Somewhere around the 2nd round of chemo (Cisplatin, Taxotere and 5FU). But...it did start growing back rather quickly, even though I still had another full round of chemo, then seven weekly doses of Carboplatin.

    The only section that I didn't have hair grow back was a small strip at the base of my neck in the back, and most of my beard under my chin...which is good for not shaving there, LOL.

    Now what was a little weird and cracked my wife an I up. When I did start getting my hair back, it was like going through puberty again, LOL....

    Best,
    John

    Hair loss
    I forgot to mention that I started with a full beard. By the time treatment was over, I looked like Col. Sanders of KFC. Yeah, all I have to do now is shave my cheeks and just under my chin. No hair on my neck. Don't even use shaving cream. I guess my Amifostine injections were higher because it was a new procedure. My rad onc said it was a new process which had shown some success. She said they "Are a little expensive" so she checked with my insurance carrier first. And you're right, my nurse was always looking for a new area for the injection. I looked like I had the measles on my belly. I took the pill as a precaution. I definitely did not want to be sick while I was under the mask. Just curious, did you keep yours. I keep mine in a room in the garage. I sometimes go into the room and it stares at me like it is saying "where you been, we were so close at one time?" Just kidding, just kidding.
    Well, it hasn't tried to talk to me.....yet! LOL
  • Mrs. Sarge
    Mrs. Sarge Member Posts: 206 Member
    mls351w said:

    Hair loss
    I forgot to mention that I started with a full beard. By the time treatment was over, I looked like Col. Sanders of KFC. Yeah, all I have to do now is shave my cheeks and just under my chin. No hair on my neck. Don't even use shaving cream. I guess my Amifostine injections were higher because it was a new procedure. My rad onc said it was a new process which had shown some success. She said they "Are a little expensive" so she checked with my insurance carrier first. And you're right, my nurse was always looking for a new area for the injection. I looked like I had the measles on my belly. I took the pill as a precaution. I definitely did not want to be sick while I was under the mask. Just curious, did you keep yours. I keep mine in a room in the garage. I sometimes go into the room and it stares at me like it is saying "where you been, we were so close at one time?" Just kidding, just kidding.
    Well, it hasn't tried to talk to me.....yet! LOL

    Will Medicare
    and a good supplement pay for those injections/pills do you think? I have no Part D on my medicare (I'd been in such good health, no scripts required) I was hoping that whatever the rad Drs used would be paid for and any scripts they issued to me to fulfill would be out of pocket. Anyone have any thoughts on that?

    Still worried about my long, uncut hair!!! Of course it's not the end of the world, but if it's a PERMANENT loss, then I sure WILL stress! I'm only doing radiation, as far as I know, this trip....so if we get it all....this will be it!

    Thanks for encouraging words!! Yes, I have my husband and probably daughter-in-law to write down answers to my questions that I've typed up so I won't forget. Also another big question someone might help me with; Do I need an oncologist Dr. as well as the oncologist radiologist that is doing the radiation? My ENT that did the biopsy is not an oncologist per se, so I'm thinking of having an Oncologist to oversee my whole self, and let the radiation Dr do his thing with the radiation. Afterwards, I'm going to need followup on all aspects of my health, I would think. Any ideas?
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member

    Will Medicare
    and a good supplement pay for those injections/pills do you think? I have no Part D on my medicare (I'd been in such good health, no scripts required) I was hoping that whatever the rad Drs used would be paid for and any scripts they issued to me to fulfill would be out of pocket. Anyone have any thoughts on that?

    Still worried about my long, uncut hair!!! Of course it's not the end of the world, but if it's a PERMANENT loss, then I sure WILL stress! I'm only doing radiation, as far as I know, this trip....so if we get it all....this will be it!

    Thanks for encouraging words!! Yes, I have my husband and probably daughter-in-law to write down answers to my questions that I've typed up so I won't forget. Also another big question someone might help me with; Do I need an oncologist Dr. as well as the oncologist radiologist that is doing the radiation? My ENT that did the biopsy is not an oncologist per se, so I'm thinking of having an Oncologist to oversee my whole self, and let the radiation Dr do his thing with the radiation. Afterwards, I'm going to need followup on all aspects of my health, I would think. Any ideas?

    If you don't require chemotherapy
    you have no need for a medical oncologist. These doctors are valuable for what they do, but they are a fifth wheel if your treatment doesn't directly involve them. Your ENT and the radiation oncologist are really sufficient under the current circumstances. Now, if you require radical surgery on down the road, or any of the chemotherapies that those of us with more advanced disease need, that changes things.

    Pat
  • mls351w
    mls351w Member Posts: 90

    If you don't require chemotherapy
    you have no need for a medical oncologist. These doctors are valuable for what they do, but they are a fifth wheel if your treatment doesn't directly involve them. Your ENT and the radiation oncologist are really sufficient under the current circumstances. Now, if you require radical surgery on down the road, or any of the chemotherapies that those of us with more advanced disease need, that changes things.

    Pat

    doctors
    A local ear/nose/throat Dr performed my biopsy. He refered me to an Otolarngolist 75 miles away. He set me up with an Oncology center 50 miles from home. They performed the rad and chemo and kept the Otolarngolist informed. Four months after treatment, he performed surgery to remove lymph nodes. So, I guess he was the overseer as such. I still visit him yearly, as well as the oncology center.
  • tommyodavey
    tommyodavey Member Posts: 728 Member
    mls351w said:

    doctors
    A local ear/nose/throat Dr performed my biopsy. He refered me to an Otolarngolist 75 miles away. He set me up with an Oncology center 50 miles from home. They performed the rad and chemo and kept the Otolarngolist informed. Four months after treatment, he performed surgery to remove lymph nodes. So, I guess he was the overseer as such. I still visit him yearly, as well as the oncology center.

    Survivor long gone
    My late father in law was diagnosed and treated for SCC III. He thought it was a canker sore and put it off until the pain drove him in to see a doctor. They operated the next day and said he was very lucky it didn't go into his jaw. This was back in the 70's and he was 57, just like me.

    No surgery but had 40 treatments of radiation. Lost his taste buds for two years and was told to just rinse with hydrogen peroxide once at night to protect the teeth. Yes, things were a lot different back then.

    He never did have a recurrence and passed away from pancreatic cancer at 74. Before, during, and until he passed away, he drank heavily and smoked a pack and a half a day. Go figure. Can you imagine smoking in the waiting room to get radiation? He did just that. His teeth were fine for ten years and then he lost most all of them. Still, not too shabby.

    With knowing all that I'm not too concerned with seeing my cancer return.

    It's an oldie but a goodie,

    Tommy
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    mls351w said:

    Hair loss
    I forgot to mention that I started with a full beard. By the time treatment was over, I looked like Col. Sanders of KFC. Yeah, all I have to do now is shave my cheeks and just under my chin. No hair on my neck. Don't even use shaving cream. I guess my Amifostine injections were higher because it was a new procedure. My rad onc said it was a new process which had shown some success. She said they "Are a little expensive" so she checked with my insurance carrier first. And you're right, my nurse was always looking for a new area for the injection. I looked like I had the measles on my belly. I took the pill as a precaution. I definitely did not want to be sick while I was under the mask. Just curious, did you keep yours. I keep mine in a room in the garage. I sometimes go into the room and it stares at me like it is saying "where you been, we were so close at one time?" Just kidding, just kidding.
    Well, it hasn't tried to talk to me.....yet! LOL

    Mask...
    mls ~ Ummmm, NO...LOL I never wanted to see that thing again...and still don't.

    Sarge ~ Like Pat said, if you aren't having chemo, no need for an oncologist.

    Myself and several others had an entire team. For me that was my ENT as the leader, an oncologist hematologist MD, and the radiologist MD.

    But I had sugery (tonsils remove by the ENT), four types of chemo and the daily rads. MyENT has always been the main man and I still see hime most frequently after three years. I see my oncologist every six months now, and finished with my rads MD after the first year.

    Best,
    John
  • mls351w
    mls351w Member Posts: 90
    Skiffin16 said:

    Mask...
    mls ~ Ummmm, NO...LOL I never wanted to see that thing again...and still don't.

    Sarge ~ Like Pat said, if you aren't having chemo, no need for an oncologist.

    Myself and several others had an entire team. For me that was my ENT as the leader, an oncologist hematologist MD, and the radiologist MD.

    But I had sugery (tonsils remove by the ENT), four types of chemo and the daily rads. MyENT has always been the main man and I still see hime most frequently after three years. I see my oncologist every six months now, and finished with my rads MD after the first year.

    Best,
    John

    masked man
    John, I never went into battle for my country, so it is the only war souvenir that I have.