Throat cancer stages and survival

terryscarlett
terryscarlett Member Posts: 143
edited March 2014 in Head and Neck Cancer #1
Can anyone tell me the severity of chemo and radiation therapy side effects for throat cancer, and the long term survival for stage IVA throat cancer

Comments

  • Fire34
    Fire34 Member Posts: 365
    #2
    Stages
    Terry
    I also had stage IVA SCC of the head & Neck with unknown primary & HPV+. I signed up for a clinical trial at U of Chicago for Erbitux.
    I underwent 8 weeks of induction chemo with Erbitux,Taxol & Carboplatin. My side effects from this portion of my treatment were a general weakness, lack of appetite(already) and some metal tastes. My first day I had an allergic reaction to one of the drugs and was inpatient that whole week. Rest of induction was uneventfull
    I was on the inpatient arm of the study. It consisted of 5 alternating weeks(on/off) of concurrent radiation/chemo. Radiation was twice daily, dont know the doses for the rads but will get them. During this phase my chemo consisted of 120 hrs of 5FU, twice daily hydroxyurea & weekly Erbitux(even the off week)
    Side effects were a severe acne like rash(erbitux), mouth sores(radiaiton/5FU)trouble swallowing, taste changes/absence of, due to the radiation, and numerous infections which had me inpatient more than I would have liked. Even though my white count stayed normal.
    Magic mouth wash helped with the swallowing(a little in my case) and a lot of meds for all the other side effects
    The side effects depend on the type of treatment that you or your loved one will be going thru. We all react differently to the type of treatment one undergoes
    Some of us had ports, mine was a dual lumen,and PEG tubes and others not. Which again all depend on your circumstances.
    Best Wishes & Prayers for you or your loved one
    Dave
  • terryscarlett
    terryscarlett Member Posts: 143
    #3
    Fire34 said:

    Stages
    Terry
    I also had stage IVA SCC of the head & Neck with unknown primary & HPV+. I signed up for a clinical trial at U of Chicago for Erbitux.
    I underwent 8 weeks of induction chemo with Erbitux,Taxol & Carboplatin. My side effects from this portion of my treatment were a general weakness, lack of appetite(already) and some metal tastes. My first day I had an allergic reaction to one of the drugs and was inpatient that whole week. Rest of induction was uneventfull
    I was on the inpatient arm of the study. It consisted of 5 alternating weeks(on/off) of concurrent radiation/chemo. Radiation was twice daily, dont know the doses for the rads but will get them. During this phase my chemo consisted of 120 hrs of 5FU, twice daily hydroxyurea & weekly Erbitux(even the off week)
    Side effects were a severe acne like rash(erbitux), mouth sores(radiaiton/5FU)trouble swallowing, taste changes/absence of, due to the radiation, and numerous infections which had me inpatient more than I would have liked. Even though my white count stayed normal.
    Magic mouth wash helped with the swallowing(a little in my case) and a lot of meds for all the other side effects
    The side effects depend on the type of treatment that you or your loved one will be going thru. We all react differently to the type of treatment one undergoes
    Some of us had ports, mine was a dual lumen,and PEG tubes and others not. Which again all depend on your circumstances.
    Best Wishes & Prayers for you or your loved one
    Dave

    Chemo
    My husband has the cancer and it has spread to 2 lymphs on the same side of the neck as the tumor. Haven't found out for sure but think it is from the HPV virus. David has had 1 chemo treatment and 3 rad treatments. The chemo drug used is cisplantin with out the erbitux as we were told to start. Dr changed his mind "said the side effects out weighed the use of this drug" My thinking is, has my husbands chances of surviving not good because they held back this drug you say helped saved you.
    His tumor is 4cm with 2 lymphs @ 2.2cm and 1.3cm.
    Thanks for your time and responce
    Terry
  • Kimba1505
    Kimba1505 Member Posts: 557
    #4
    Hi and Welcome
    Hi TerryScarlet, and welcome to these message boards. I am sorry that you have had to find your way here to ask about throat cancer, its treatment, side effects and survival rate. But here you are, and it is a good good place.
    My parter, Mark, was diagnosed with Squamous Cell Carcinoma of the left tonsil. Stage IV, HPV16+.
    The knowledge I am about to share is based on the rapid learning curve I have been on since April, and my experience to SCC tonsil. Other wonderful people on this board can/will share thier experiences and what they learned through their own process. In addition, some folks here have taken things a step further and have researched this cancer and therefore have another dimension to add.
    To answer your first question regarding side effects to chemo and radiation of throat cancer much depends on the type of cancer, the location of the primary, and how advanced it is.
    Mark's cancer was pretty extensive in that it had begun to move into the muscle in his neck. Therefore, he started with surgery and had as much cut out as possible.
    They knew where his primary was, the tonsil, so when they radiated they could focus much of the radiation in that area. When the primary is unknown, they radiate a larger field and side effects can be more severe.
    Typical side effects include: loss of taste, large painful ulcers in the mouth and throat, dry mouth, secretions/mucous in the throat, loss of voice, burns to the outer skin, loss of hair to the radiated area, inability to swallow, weight loss. Many folks get a PEG, a feeding tube placed directly into the stomach before starting treatment. (Mark, who was able to maintain some swallowing throughout his treatment still needed to supplement with the feeding tube.)
    These side effects start out mild and then progress, and then linger for a good while after. I say a good while because there is a range. Mark is eating pretty well 4 weeks out and just got his PEG removed. You will read others struggle to swallow for a lot longer. Mark is still on medication for pain, and the pain can be great.
    Side effects to chemo again vary based on what chemo drugs. Cisplatin is known as the "gold standard". It is a knock you on your a** drug. They use it because it works, but it is harsh. There are MANY drugs one takes along with Cisplatin to try to minimize the "knock you on your a**" effect. Hearing loss is also a side effect to this drug.
    Erbutux is being used in clinical trials and seems to be getting some good results.
    Mark started on Cisplatin, but his hearing loss was too great after the first dose, so he was switched to Carboplatin-Taxol. A good choice, but not quite the big guns of it's big brother, Cisplatin. Side effects are much less.

    As far as statistics on survival...I would stay away from the internet, and the general statistics. If there is one thing I have learned, it is that those statistics are a reflection of everything, good treatment and bad, HPV, and not HPV (HPV has a better prognosis: HPV derived H&N cancers respond to treatment very well), young people, old people, good health going in, bad health going in, smokers/heavy drinkers, nonsmokers/nonheavy drinkers...you get my point.

    This is a tough road. H&N treatment is some of the roughest. But if you join us on these boards you will read amazing stories, and you can get many answers, and you will receive tremendous support.

    As Mark's caregiver and advocate during treatment...I don't know what I would have done without the folks here. They even lifted me up when I started to fall down.

    My very best to you,
    Kim
  • Hal61
    Hal61 Member Posts: 655
    #5
    "It varies"
    Hi Terry, Kimba does a great job of summarizing to answer your questions. Just a couple of general suggestions for you and your husband: be patient, get used to hearing "It varies from case to case," and be patient. Depending on all the factors Kimba covered, recovery can take anwhere from four months--post treatment--to a year. I had three Cisplatin sessions and 35 radiation treatments, and walked around my apartment in a fog from about a third of the way through my treatment to the end. During treatment, the day-to-day schedule ruled my consciousness, so I was actually less anxious during most of that time myself. After treatment is when your husband will have to settle in, keep up the nutrition, and be content to take those baby steps to health. The truth is, better days will come, and your husband and your family will have fought a battle and won. Stop by here often for support and information.

    best, Hal
  • terryscarlett
    terryscarlett Member Posts: 143
    #6
    Hal61 said:

    "It varies"
    Hi Terry, Kimba does a great job of summarizing to answer your questions. Just a couple of general suggestions for you and your husband: be patient, get used to hearing "It varies from case to case," and be patient. Depending on all the factors Kimba covered, recovery can take anwhere from four months--post treatment--to a year. I had three Cisplatin sessions and 35 radiation treatments, and walked around my apartment in a fog from about a third of the way through my treatment to the end. During treatment, the day-to-day schedule ruled my consciousness, so I was actually less anxious during most of that time myself. After treatment is when your husband will have to settle in, keep up the nutrition, and be content to take those baby steps to health. The truth is, better days will come, and your husband and your family will have fought a battle and won. Stop by here often for support and information.

    best, Hal

    Thank you all
    I thank you each and every one for your time and responce. I will keep all updated on Daves progress, and will try to be patient and take one day at a time, and will have more questions as we go along with this treatment. Thanks to all and God Bless each and every
    one of us.
    Terry
  • Dragons7-7-2010
    Dragons7-7-2010 Member Posts: 79
    #7
    Kimba1505 said:

    Hi and Welcome
    Hi TerryScarlet, and welcome to these message boards. I am sorry that you have had to find your way here to ask about throat cancer, its treatment, side effects and survival rate. But here you are, and it is a good good place.
    My parter, Mark, was diagnosed with Squamous Cell Carcinoma of the left tonsil. Stage IV, HPV16+.
    The knowledge I am about to share is based on the rapid learning curve I have been on since April, and my experience to SCC tonsil. Other wonderful people on this board can/will share thier experiences and what they learned through their own process. In addition, some folks here have taken things a step further and have researched this cancer and therefore have another dimension to add.
    To answer your first question regarding side effects to chemo and radiation of throat cancer much depends on the type of cancer, the location of the primary, and how advanced it is.
    Mark's cancer was pretty extensive in that it had begun to move into the muscle in his neck. Therefore, he started with surgery and had as much cut out as possible.
    They knew where his primary was, the tonsil, so when they radiated they could focus much of the radiation in that area. When the primary is unknown, they radiate a larger field and side effects can be more severe.
    Typical side effects include: loss of taste, large painful ulcers in the mouth and throat, dry mouth, secretions/mucous in the throat, loss of voice, burns to the outer skin, loss of hair to the radiated area, inability to swallow, weight loss. Many folks get a PEG, a feeding tube placed directly into the stomach before starting treatment. (Mark, who was able to maintain some swallowing throughout his treatment still needed to supplement with the feeding tube.)
    These side effects start out mild and then progress, and then linger for a good while after. I say a good while because there is a range. Mark is eating pretty well 4 weeks out and just got his PEG removed. You will read others struggle to swallow for a lot longer. Mark is still on medication for pain, and the pain can be great.
    Side effects to chemo again vary based on what chemo drugs. Cisplatin is known as the "gold standard". It is a knock you on your a** drug. They use it because it works, but it is harsh. There are MANY drugs one takes along with Cisplatin to try to minimize the "knock you on your a**" effect. Hearing loss is also a side effect to this drug.
    Erbutux is being used in clinical trials and seems to be getting some good results.
    Mark started on Cisplatin, but his hearing loss was too great after the first dose, so he was switched to Carboplatin-Taxol. A good choice, but not quite the big guns of it's big brother, Cisplatin. Side effects are much less.

    As far as statistics on survival...I would stay away from the internet, and the general statistics. If there is one thing I have learned, it is that those statistics are a reflection of everything, good treatment and bad, HPV, and not HPV (HPV has a better prognosis: HPV derived H&N cancers respond to treatment very well), young people, old people, good health going in, bad health going in, smokers/heavy drinkers, nonsmokers/nonheavy drinkers...you get my point.

    This is a tough road. H&N treatment is some of the roughest. But if you join us on these boards you will read amazing stories, and you can get many answers, and you will receive tremendous support.

    As Mark's caregiver and advocate during treatment...I don't know what I would have done without the folks here. They even lifted me up when I started to fall down.

    My very best to you,
    Kim

    positive attitude helps
    I am newbie diagnosed with Squamous Cell Carcinoma of the right tonsil. Stage II, HPV16+.
    and this does not necessarily answer Terry's question but This online support group is amazing. Take advantage of the wealth of knowledge you find here and on good sites like MD Anderson Cancer center, Sloan Kettering and the top hospitals in my opinion. The general internet searches bring up some scary and oft times incorrect information.

    Kim, you are an amazing woman and role model fo support for Mark. As well as a font of information for us newbies.

    I had it explained to me but still wonder why mine is considered stage II based on descriptions but then again I am not in the medical field and all this is new to me.

    TerryScarlet sending you healing thoughts and strength during this difficult time. Hope you find the help you need on this site just as I did.

    ~ E. Cib
  • Kimba1505
    Kimba1505 Member Posts: 557
    #8
    terryscarlett said:

    Thank you all
    I thank you each and every one for your time and responce. I will keep all updated on Daves progress, and will try to be patient and take one day at a time, and will have more questions as we go along with this treatment. Thanks to all and God Bless each and every
    one of us.
    Terry

    Patience
    Terry,
    You and your husband will move through this. Each day will come and go, I crossed them off to see them go. The end of treatment will arrive, and you both will enter a new phase. It is amazing how you just "do it".
    Stay strong, and when strength fails you come to us.
    Kim
  • Jimbo55
    Jimbo55 Member Posts: 590 Member
    #9
    terryscarlett said:

    Thank you all
    I thank you each and every one for your time and responce. I will keep all updated on Daves progress, and will try to be patient and take one day at a time, and will have more questions as we go along with this treatment. Thanks to all and God Bless each and every
    one of us.
    Terry

    Yes it certainly does vary.
    Hi Terryscarlett, I was diagnosed with stage IV base of tongue SCC with some lymph node involvement. My treatment was 35 rads and 3 concurrent cistplatin chemos. My treatment was completed on July 31, so I am just 3 weeks out. Reaction to treatment varies considerably between patients. Some folks have a very rough time of it and seem to suffer from every side effect. I am one of those fortunate few who had a relatively easier time of it. I went through treatment without the need for the PEG or a port and didn't require pain medication. My worst time of it was the final week of treatment and the following 4-5 days: difficulty in swallowing and a general lack of energy. I had a few mouth ulcers and lost about 20 lbs during treatment. I went from about 180 to 160 lbs.

    Why was my treatment not as bad as others experienced? Hard to say, but I did follow a few things I picked up on this forum. I gargle numerous times each day with the baking soda/salt solution. I also gargled with L-Glutamine every day. A few studies have shown moderate exercise to be beneficial in helping against fatigue. I endeavored to take a 30-45 minute walk daily. The last week of treatment and the first week post treatment 30 minutes was my limit. My wife made a fruit smoothie each morning for me to which we added whey protein powder and L-Glutamine. I started feeling better about 4-5 days out from treatment and the improvement has continued.

    Above all, stay positive and stay strong! I hope Dave's treatment goes as well as mine did. Cheers

    Jimbo
  • terryscarlett
    terryscarlett Member Posts: 143
    #10
    Jimbo55 said:

    Yes it certainly does vary.
    Hi Terryscarlett, I was diagnosed with stage IV base of tongue SCC with some lymph node involvement. My treatment was 35 rads and 3 concurrent cistplatin chemos. My treatment was completed on July 31, so I am just 3 weeks out. Reaction to treatment varies considerably between patients. Some folks have a very rough time of it and seem to suffer from every side effect. I am one of those fortunate few who had a relatively easier time of it. I went through treatment without the need for the PEG or a port and didn't require pain medication. My worst time of it was the final week of treatment and the following 4-5 days: difficulty in swallowing and a general lack of energy. I had a few mouth ulcers and lost about 20 lbs during treatment. I went from about 180 to 160 lbs.

    Why was my treatment not as bad as others experienced? Hard to say, but I did follow a few things I picked up on this forum. I gargle numerous times each day with the baking soda/salt solution. I also gargled with L-Glutamine every day. A few studies have shown moderate exercise to be beneficial in helping against fatigue. I endeavored to take a 30-45 minute walk daily. The last week of treatment and the first week post treatment 30 minutes was my limit. My wife made a fruit smoothie each morning for me to which we added whey protein powder and L-Glutamine. I started feeling better about 4-5 days out from treatment and the improvement has continued.

    Above all, stay positive and stay strong! I hope Dave's treatment goes as well as mine did. Cheers

    Jimbo

    Jimbo
    Thank you so much for the info and incouraging words. I am very glad to hear your treatment went so well and can only pray Dave's will go half as well.
    Dave has been trying to work but he gets sleepy. He drives a big rig locally and is home every night and off weekends. I told him to slow down and rest. He did take friday off. I think the chemo side effects hit hard the 3rd day after recieving it.
    We have just started and I know it will be a hard time for both of us. I am trying to stay strong for him.
    He has his peg in and he has a port also, we are ready for what ever comes our way. Just want this to be over and move on from this!! I lost my mother to melanoma and have seen what this terrible C can do. Please keep us in your prayers and thanks to all for your info. I will be checking back often.

    Terry
  • miccmill
    miccmill Member Posts: 248
    #11
    terryscarlett said:

    Jimbo
    Thank you so much for the info and incouraging words. I am very glad to hear your treatment went so well and can only pray Dave's will go half as well.
    Dave has been trying to work but he gets sleepy. He drives a big rig locally and is home every night and off weekends. I told him to slow down and rest. He did take friday off. I think the chemo side effects hit hard the 3rd day after recieving it.
    We have just started and I know it will be a hard time for both of us. I am trying to stay strong for him.
    He has his peg in and he has a port also, we are ready for what ever comes our way. Just want this to be over and move on from this!! I lost my mother to melanoma and have seen what this terrible C can do. Please keep us in your prayers and thanks to all for your info. I will be checking back often.

    Terry

    Terry
    You sound like you're ready for this battle. As you see, everyone had reacted differently with a lot of common side effects.

    Like Kim said, you're going to move through it. We had about 2 weeks of really rough time but we got through it. And I would say it was because of all the support and information I got from this forum.

    I work in a hospital and am surrounded by resources but it's not at all the same as talking with people who have actually been there.

    Keep coming back. We'll prop you up when you need a lift. It's a tough treatment but you're going to come out on the other end and that's a very sweet place to be.

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