chemo drugs alternatives?

imsureman
imsureman Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
i begin chemo and radiation on july 28. i am to be recieving a drug called cisplatin. any advise from anyone on how to get through this? also did anyone recieve any other drug than this that was effective. i am 46 and have stage 4 tonsil cancer which metastisized to a lymph node in my neck. i had the lymph node removed and my tonsils removed. im a bit freeked out over the treatments right now and i became clostrophobic at the mask fitting ct/simm. any help. thanks steve.

Comments

  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #2
    Steve
    I had tongue/neck surgery in October of '05 (age 49), followed by seven week of radiation and several rounds of chemotherapy.

    My chemo mix was cisplatin, benadryl, zentac and decadron. In my experience, AND EVERYONE'S IS DIFFERENT, the first day following treatment, due to the decadron (a steroid) I was one energetic fellow! However, alas, by day two I was one sick puppy. The nausea generally lasted for a couple of days and no matter what I took to assuage it, it would not simply go away. Still, after those couple of days, I came back to a more normal place: it was doable.

    Re the claustrophobia, I have a tale to tell, but it is long. Suffice it that I took a small dosage of valium every morning prior to going in, and this helped to some degree. I also recommend music, as it both takes your mind of what's going on to some degree but also serves as a sort of clock.

    Personally, I think it's good that you had surgery to remove the cancer. Congratulations on your survivorship, and welcome to the club.

    Take care,

    Joe
  • imsureman
    imsureman Member Posts: 4
    #3
    soccerfreaks said:

    Steve
    I had tongue/neck surgery in October of '05 (age 49), followed by seven week of radiation and several rounds of chemotherapy.

    My chemo mix was cisplatin, benadryl, zentac and decadron. In my experience, AND EVERYONE'S IS DIFFERENT, the first day following treatment, due to the decadron (a steroid) I was one energetic fellow! However, alas, by day two I was one sick puppy. The nausea generally lasted for a couple of days and no matter what I took to assuage it, it would not simply go away. Still, after those couple of days, I came back to a more normal place: it was doable.

    Re the claustrophobia, I have a tale to tell, but it is long. Suffice it that I took a small dosage of valium every morning prior to going in, and this helped to some degree. I also recommend music, as it both takes your mind of what's going on to some degree but also serves as a sort of clock.

    Personally, I think it's good that you had surgery to remove the cancer. Congratulations on your survivorship, and welcome to the club.

    Take care,

    Joe

    thanks joe
    thanks for the responce joe. i mentioned valium to my doc because i have some but he feels that something called ativan works better and is safer, aparently that is an anti-anxiety med. how often did you take the cisplatin? im going to get 3 doses over 7 weeks. how long were you in the "machine" during radiation treatments? thanks again joe im getting close to d day and starting to freek out a bit. ive read many of the comments throughout this web site and i have a general idea what im in for. trying to keep a good attitude but i find myself mourning some of the things i might be loosing. but death scares me more.

    steve
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #4
    imsureman said:

    thanks joe
    thanks for the responce joe. i mentioned valium to my doc because i have some but he feels that something called ativan works better and is safer, aparently that is an anti-anxiety med. how often did you take the cisplatin? im going to get 3 doses over 7 weeks. how long were you in the "machine" during radiation treatments? thanks again joe im getting close to d day and starting to freek out a bit. ive read many of the comments throughout this web site and i have a general idea what im in for. trying to keep a good attitude but i find myself mourning some of the things i might be loosing. but death scares me more.

    steve

    death scared me more too
    If doc says ativan, then ativan it is. Valium was just a suggestion. Frankly, I had never done valium before, and am not a big proponent of any particular anti-anxiety med. Whatever gets you through.

    I had four cisplatin treatments over the seven weeks, to answer your question in that regard. And my experiences with it are not necessarily what you will experience. Again, for any number of reasons, we deal with these things, surgery, chemo, rads, in different ways.

    If my memory is correct, and just today I looked on my page here to verify something else, my rad sessions lasted between 30 to 45 minutes. I have a feeling, reading posts from more recent recipients of radiation treatment, that they have refined and shortened that.

    Others can support or refute that. Mine were long, that's all I know.

    You will do fine. The chemo CAN be a bear, for sure, and, for me, the rads in the mask were even tougher, but I managed to get through because, as some lovely lady recently responded elsewhere in these boards: I had to.

    You will too.

    Keep us posted.

    Take care,

    Joe
  • TIM_WWJD
    TIM_WWJD Member Posts: 38
    #5
    imsureman said:

    thanks joe
    thanks for the responce joe. i mentioned valium to my doc because i have some but he feels that something called ativan works better and is safer, aparently that is an anti-anxiety med. how often did you take the cisplatin? im going to get 3 doses over 7 weeks. how long were you in the "machine" during radiation treatments? thanks again joe im getting close to d day and starting to freek out a bit. ive read many of the comments throughout this web site and i have a general idea what im in for. trying to keep a good attitude but i find myself mourning some of the things i might be loosing. but death scares me more.

    steve

    Radiation & Chemo
    Steve
    I also had stage four tonsil cancer. They only found it in one tonsil and removed that. They also sugested either surgery to remove any other possible cells or a intense chemo using Carboplatin and Taxol. I chose the chemo, it was three cycles over nine weeks. Then I had 30 IMTR radiation treatments and weekly Cisplatin and Taxol chemo. For me the fist chemo I had was so much worse. I had bad metal tastes in my mouth, if that happens try peppermint candies. The radiation went good for three weeks but then the burns started hurting. You will need some pain meds for this. I sugest using a greaseless lotion on your skin from the beginning to end. I used Neutrgena oil free at first and then I was using Aquaphor and mixing it with Solarcain for some more pain relief. Also keep getting your fluids to help the cells recover. You didn't say if you got a PEG tube, if not i really advise you get this done as swallowing will be very hard if not impossible. As for the mask, I do not have claustriphobia (sp) so I only had a couple of bad experiences with feeling locked down. I also had Ativan (Lorazepam) and Valuim (Diazepam) and I can't tell you which is better. I used them for bedtime to get some sleep. I think they are about the same. One thing to remember that the radiation treatment time is really not that long. Tell your technicians your concern and they will hurry back to get the mask off ASAP. I tried to think about things during the day or things I needed to do the next day. I know it is a scary time and I was so amazed that no one could tell me how everything would react with me. But as you will find everyone is different. This is hard work I am five weeks after my last treatment and still not eating right and I am so tired all the time so don't expect too much too soon. keep your spirits up and your food and liquids coming in. God bless you and good luck.
    Tim
  • imsureman
    imsureman Member Posts: 4
    #6
    TIM_WWJD said:

    Radiation & Chemo
    Steve
    I also had stage four tonsil cancer. They only found it in one tonsil and removed that. They also sugested either surgery to remove any other possible cells or a intense chemo using Carboplatin and Taxol. I chose the chemo, it was three cycles over nine weeks. Then I had 30 IMTR radiation treatments and weekly Cisplatin and Taxol chemo. For me the fist chemo I had was so much worse. I had bad metal tastes in my mouth, if that happens try peppermint candies. The radiation went good for three weeks but then the burns started hurting. You will need some pain meds for this. I sugest using a greaseless lotion on your skin from the beginning to end. I used Neutrgena oil free at first and then I was using Aquaphor and mixing it with Solarcain for some more pain relief. Also keep getting your fluids to help the cells recover. You didn't say if you got a PEG tube, if not i really advise you get this done as swallowing will be very hard if not impossible. As for the mask, I do not have claustriphobia (sp) so I only had a couple of bad experiences with feeling locked down. I also had Ativan (Lorazepam) and Valuim (Diazepam) and I can't tell you which is better. I used them for bedtime to get some sleep. I think they are about the same. One thing to remember that the radiation treatment time is really not that long. Tell your technicians your concern and they will hurry back to get the mask off ASAP. I tried to think about things during the day or things I needed to do the next day. I know it is a scary time and I was so amazed that no one could tell me how everything would react with me. But as you will find everyone is different. This is hard work I am five weeks after my last treatment and still not eating right and I am so tired all the time so don't expect too much too soon. keep your spirits up and your food and liquids coming in. God bless you and good luck.
    Tim

    thanks tim
    i plan on talking to the techs about my concerns. i think i can do it as long as i know they will absolutly limit my time in that contraption. my doctor keeps disregarding the notion that i will need a feeding tube, i actually because of what ive read, asked for one, he says based on my age and health i wont need one, im still in discussion with him over this issue. i understand the pros and cons of the argument for or against the tube. i do like this doctor hes very thorough but i do not understand his reluctance on this issue. thanks for the advice and i hope your throat recovers, and the cancer never does.

    steve

    p.s. tim you never mentioned how long your radiation treatments lasted.
  • lolojldunn
    lolojldunn Member Posts: 37
    #7
    imsureman said:

    thanks tim
    i plan on talking to the techs about my concerns. i think i can do it as long as i know they will absolutly limit my time in that contraption. my doctor keeps disregarding the notion that i will need a feeding tube, i actually because of what ive read, asked for one, he says based on my age and health i wont need one, im still in discussion with him over this issue. i understand the pros and cons of the argument for or against the tube. i do like this doctor hes very thorough but i do not understand his reluctance on this issue. thanks for the advice and i hope your throat recovers, and the cancer never does.

    steve

    p.s. tim you never mentioned how long your radiation treatments lasted.

    Tonsil Cancer
    Hi Steve,
    I too had SCC stage 4 of the right tonsil. I finished my treatments on August 16, 2007.

    The "offender" was removed. Prior to commecing radiation and chemo I had an injection port and a PEG tube installed. My Docs wanted this done prior to starting treatments. That was definitely the right decision. I don't think that I would have wanted to endure these procedures once radiation and chemo started.

    I received two radiation treatments a day for twenty-six days. Chemo was Cisplatin and that was weekly for five weeks. Prior to my first treatment I received an IV solution every day. The drug Amifostine was suspended in the solution. It was my understanding that the Amifostine was to save my saliva glands. It's quite expensive if my memory serves me correctly.

    You may have read here in other posts but dental care is of the utmost importance. My dentist gave me a thorough exam before I started my treatments as well as a thorough cleaning. He also made me a set of teeth guards that I wore during my radiation treatments. The other was used in the evenings for floride treatments at home.

    I must admit that when I first started radiation the combination of the teeth guards and the mask made for some interesting times. I got to the point where I was counting the cycles on the machine. It reminded me of an old New Holland baler from my youth...I hated that machine too! I don't think that each treatment was much more than fifteen minutes.

    As time progressed the mask seemed to get bigger. Hey dumby, you were lossing weight! The Techs were absolutely super! Don't be bashful about asking questions. It was real intimidating the first time that the bank like vault door closed and your locked in that room all by yourself. In my case they had closed circuit TV and an intercom should I need anything. Again, the Techs made it all bearable.

    I was very fortunate to have the team of Docs and Techs that I had. The PEG tube was a real life saver for me. As sore as my throat was it was impossible for me to maintain adequate norishment without it. As it was I lost almost fifty pounds.

    Don't be bashful. Ask questions. When you think of them at home, write them down and ask the next time you see the Doc or Tech. I was fortunate to see both of my Docs (radiologist and medical onocologist) every day of my treatment.

    Wishing you the very best Steve.

    God Bless

    Jim
  • TIM_WWJD
    TIM_WWJD Member Posts: 38
    #8
    lolojldunn said:

    Tonsil Cancer
    Hi Steve,
    I too had SCC stage 4 of the right tonsil. I finished my treatments on August 16, 2007.

    The "offender" was removed. Prior to commecing radiation and chemo I had an injection port and a PEG tube installed. My Docs wanted this done prior to starting treatments. That was definitely the right decision. I don't think that I would have wanted to endure these procedures once radiation and chemo started.

    I received two radiation treatments a day for twenty-six days. Chemo was Cisplatin and that was weekly for five weeks. Prior to my first treatment I received an IV solution every day. The drug Amifostine was suspended in the solution. It was my understanding that the Amifostine was to save my saliva glands. It's quite expensive if my memory serves me correctly.

    You may have read here in other posts but dental care is of the utmost importance. My dentist gave me a thorough exam before I started my treatments as well as a thorough cleaning. He also made me a set of teeth guards that I wore during my radiation treatments. The other was used in the evenings for floride treatments at home.

    I must admit that when I first started radiation the combination of the teeth guards and the mask made for some interesting times. I got to the point where I was counting the cycles on the machine. It reminded me of an old New Holland baler from my youth...I hated that machine too! I don't think that each treatment was much more than fifteen minutes.

    As time progressed the mask seemed to get bigger. Hey dumby, you were lossing weight! The Techs were absolutely super! Don't be bashful about asking questions. It was real intimidating the first time that the bank like vault door closed and your locked in that room all by yourself. In my case they had closed circuit TV and an intercom should I need anything. Again, the Techs made it all bearable.

    I was very fortunate to have the team of Docs and Techs that I had. The PEG tube was a real life saver for me. As sore as my throat was it was impossible for me to maintain adequate norishment without it. As it was I lost almost fifty pounds.

    Don't be bashful. Ask questions. When you think of them at home, write them down and ask the next time you see the Doc or Tech. I was fortunate to see both of my Docs (radiologist and medical onocologist) every day of my treatment.

    Wishing you the very best Steve.

    God Bless

    Jim

    Good Job Jim
    Steve
    Jim did a better job than me on describing the radiation process. I would guess it was ten to fifteen minutes also. Our center had a radio also so if you wanted music you could bring it. Steve is also right don't be affraid to ask questions I think sometimes the doctors and techs forget that this is your first time and they assume you know what is going on. My wife was even allowed to sit in one time and watch with them to see how the radition was tageted with the computer. You will do fine just stay positive and be patient on the recovery.
    God bless you, Tim
  • victor53
    victor53 Member Posts: 97
    #9
    TIM_WWJD said:

    Good Job Jim
    Steve
    Jim did a better job than me on describing the radiation process. I would guess it was ten to fifteen minutes also. Our center had a radio also so if you wanted music you could bring it. Steve is also right don't be affraid to ask questions I think sometimes the doctors and techs forget that this is your first time and they assume you know what is going on. My wife was even allowed to sit in one time and watch with them to see how the radition was tageted with the computer. You will do fine just stay positive and be patient on the recovery.
    God bless you, Tim

    I had 6 weeks of induction
    I had 6 weeks of induction chemo Taxol, Erbitux and Carboplatin then i had 7 weeks of Radiation with double sessions on fridays plus
    Cisplatin with was given to me everyday M-F on weeks 1 ,4, and 7 havent read of anybody else getting it the way i did i am about 10 months out of treatment and doing great it was hell thou weeks 4-7 of radiation and the month after. At month 7 after treatment i was at a comfortable level of eating and energy. Getas much food and water in you as possible the more food and water you get in the better you feel simple. Get a Peg and a port .
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator

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