Radiation Question????

Matisse20
Matisse20 Member Posts: 9
in Head and Neck Cancer #1
Merry Christmas to all!!!

I am writing on behalf of my Dad, mostly because I can type a lot faster than him... and he would rather be watching the Jets/Giants Game. My Dad was diagnosed with SCC in late October of this year with the primary tumor unknown. He started his two rounds of up-front Chemo right after Thanksgiving, and will be starting Radiation/ERBITUX on January 9th for 7 weeks. He has a couple of questions regarding radiation...

1) Was anyone hospitalized during the treatment (for whatever reason)?

2) How long did it take after the Radiation ended (providing the cancer was eliminated) did it take for people to feel "normal"? What was the progression of the recovery.

Yesterday his doctor (a wonderful man that my Mom and I really like) said that it was going to take three months to recover. That being said, my Dad took it as being in a hospital bed not being able to do anything for three months. My Dad is 64 and in 'so-so' health... Nevertheless he is a very very strong man.

Thank you for your answers and God Bless!
-Margaret

Comments

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #2
    A Quick reply
    Margaret,

    I will try to answer your questions quickly if I can, I am sure that others here will also give you some answers. I am not to sure how many will visit the board this evening or tomorrow.

    Question #1- Yes, many people go to the hospital during their treatments due to some of the side effects of treatment. I was fortunate enough and did not have to go. Some of the causes for a visit to the hospital is dehydration, not enough intake of fliuds during the day. We really have to take in roughly 64 ozs of fluid per day during our Treatments. If we don't, we get dehydrated and have to get an IV put in to Hydrate the person.

    Another reason is constipation, due again from lack of water/fluids. We take pain med's and this has an affect on us as well. So, you can see, hydrate, hydrate and hydrate. There are some others that will mention some other items as well, but I wanted to point this out now as your Dad has already started his treatments with the Chemo already.

    Question #2- After the final Radiation Treatment, we go thru a phase that we call "Cooking" where the radiation is accumlative and the full force of the radiation hits us after the last treatment. This period may last anywhere from 4-8 weeks and some of us go a little longer before we start to feel better.

    Now, to answer another part of your post. Mention to your Dad to listen to his body. We want to be as normal as possible, but we don't always have the energy. He should keep a positive attitude and find little things to do when he isn't up to doing to much. Just a simple walk around the block will help. I did sleep off and on some days, but I was able to drive myself to the treatments each day and back again. I would split wood for a few minutes to give myself a reason other then the radiation to be tired and then I took a nap not feeling guilty about not doing something. A little mind game I play on myself, just made me feel better.

    I am glad that you found this site because there are allot of helpful people here.

    My Best to You, your Dad and all your Family. My Best to Everyone Here
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #3
    It's different for everyone
    Hi Margaret,

    Welcome to the site. This is a great place to come and ask questions. The folks here are very helpful.

    I had 8 weeks of concurrent chemo and radiation - with Cisplatin. I was never hospitalized. Other folks were, for one reason or another. I had a feeding tube installed about three weeks into my treatment, which provided good nutrition, which I think contributed to my relatively rapid recovery. I was never bed-ridden during treatment, although I did lie around quite a bit. Some particularly energetic folks here were able to keep on working during treatment, but I did not. My doctor told me that it would take me four weeks to "turn the corner" after finishing treatment. It was closer to five or six weeks.

    Also - you will keep hearing the term "new normal" here. Not one of us is what we were before. There are effects of the treatment that will linger, probably for the rest of our lives. These symptoms vary quite a bit with the individual. Some are more severe, others are less so. I have issues with edema, dry mouth, mucus, scratchy throat and hoarseness. Other folks will share different symptoms.

    I took my 12-week FMLA leave from my job, and took another 12 weeks after that for recovery; 24 weeks total. After that, I was able to return to work full time, but I have a fairly low-stress mostly-desk job. Others here took a bit longer to return to hard physical labor type work. While I was out on medical leave, I was able to take a short trip, as well as spend a quiet two weeks camping in the high country, so there wasn't a lot of bed-ridden stuff going on.

    A guy from my support group had a bit more trouble. The chemo made him very nauseated, and he had an unsupervised episode of vomiting which left him with aspiration pneumonia which hospitalized him for a week. He waited till close to the end of his treatment to request that a feeding tube be installed, and on their first attempt, they were unable to intubate him to do so. The second attempt to install the feeding tube resulted in issues that required a follow-up surgery, resulting in another short hospital stay. Nevertheless, he was able to complete the treatment, and his recovery is progressing very well.

    Best wishes to your father, as he progresses through the treatment process.

    Deb
  • DrMary
    DrMary Member Posts: 531 Member
    #4
    Hard to predict, no matter what
    Doug was hospitalized twice - once for blood clots and once for dehydration. Neither really had to do with the radiation.

    The radiation really does take it out of you. Some folks do spend the last week or so either in the hospital or at least in bed 20+ hours per day. Doug is very, very fit - he did a bit of work from home and also had a computer/scanner/photo project he was working on; he certainly napped a few hours per day, and I drove him for the last few weeks because he felt foggy, but that was it. (He was about 10 years younger than your father, by the way.)

    It's a bit like ski-jumping. You don't really know how it's going to go until you are part-way through. . . at that point, it's really too late to worry about it. And then it's over. Whew.
  • ratface
    ratface Member Posts: 1,337 Member
    #5
    DrMary said:

    Hard to predict, no matter what
    Doug was hospitalized twice - once for blood clots and once for dehydration. Neither really had to do with the radiation.

    The radiation really does take it out of you. Some folks do spend the last week or so either in the hospital or at least in bed 20+ hours per day. Doug is very, very fit - he did a bit of work from home and also had a computer/scanner/photo project he was working on; he certainly napped a few hours per day, and I drove him for the last few weeks because he felt foggy, but that was it. (He was about 10 years younger than your father, by the way.)

    It's a bit like ski-jumping. You don't really know how it's going to go until you are part-way through. . . at that point, it's really too late to worry about it. And then it's over. Whew.

    64 and so, so condition
    You want to kind of measure by what shape he was in before cancer. I'm guessing all of 12 months in your dad's case????? What did he do before that you can measure against now?? Everyones is different, some work through treatment. I was never hospitalized but energy levels can sure drag.
  • hawk711
    hawk711 Member Posts: 566
    #6
    ratface said:

    64 and so, so condition
    You want to kind of measure by what shape he was in before cancer. I'm guessing all of 12 months in your dad's case????? What did he do before that you can measure against now?? Everyones is different, some work through treatment. I was never hospitalized but energy levels can sure drag.

    Margaret
    Just a heads up that Rads are a butt kicker. They will make him weak, hurting, and feeling worse than he does now, with Cancer....But, it works and it is the real thing that kills the cancer, I believe. 10 years ago Chemo wasn't even used, just Rads. I think both together are a bigger safety net, but the rads work. Just tell your pop to put on his big boy boots and that he'll get better, in 4 months, 8 months or 12 months, but he will bet back to a "new normal" I hate to guess on when someone will feel better other that to say, he will get better and be very, very patient, VERY PATIENT....
    I will you all the best in conquering this beast of a disease....
    Hope and prayers,
    Steve
  • HydroLar
    HydroLar Member Posts: 14
    #7
    Feeling Normal
    Margaret, it is a different recovery rate for each person so you really can't predict when someone will start feeling normal again. As someone else mentioned radiation is the real butt-kicker here and will make you sick and feeling very low at times. I had constant nausea for several weeks and, frankly, it was hell.

    But I knew I would start feeling better someday and did my best to endure. At that point my worst enemy was depression more than anything else. Support from family and friends was a big help.

    Larry
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #8
    My tx regiment was different than your Dad's, but a number of people, including John, have had a similar tx- with chemo, then rads with second-line chemo. And, most are doing real good, now.

    1)I was hospitalized for 4 nights in week #6 due to an infection that had developed, but it was not rad-related. Was mainly due to my chemo regiment, and how it broke-down all of my body's defenses. Antibiotic drips corrected the problem.

    2)My take on the rads is different than most others, here. NPC w/unknown Primary, I was getting zapped in 20 places/session, and my mouth took a major hit. I turned the corner during that forementioned week #6, and my last two weeks of rads, and beyond, was perhaps easier than most others. The "cooking" is something I did not experience. Yes, my mouth was still problematic for awhile, but it was a cakewalk compared to the first 5 weeks of my treatment. My food intake was exclusive to the PEG during all of treatment, and the first couple weeks after tx, but by the end of the month in post-tx I was eating pancakes drenched in butter and syrup, and experimenting with other foods, like tapioca and puddings. My side-effect's condition did not get worse after the rads ended. I was 54 during tx, and was frankly amazed by how well my mouth recovered from the initial conditions during weeks 1-5.

    That said, Margaret, your Dad will just have to "play it as it lays," so to speak, and deal with his own symptoms, which hopefully will not be drastic. I might be the only one, here, who considers week #6 as the turning point with my condition starting to get better, albeit gradual, during the last two weeks of getting only rads, and beyond. Way I see it, my being in the hospital did me a world of good- those antibiotics gave my body exactly what it needed to get back in control of my well-being, and that continued to this day- now being 32-months after my treatment ended.

    kcass
  • Matisse20
    Matisse20 Member Posts: 9
    #9
    THANK YOU!
    Thank you for all your input!!! Ironically my Dad was admitted to the hospital today with a distended abdomen and feeling VERY weak. He will be in for 2 - 4 days while they try to get to the bottom of this issue. The good news is that his right lymphoid (the problem child) is almost 100% back to normal!!! They doctor was very very pleased about that fact... For me, it raising a bigger question... Why do they have to radiate when the primary tumor is unknown? Hopefully the doctors can give us a good answer to that one.

    Thank you for all your replies! This is a great forum!!!
    -Margaret
  • Pam M
    Pam M Member Posts: 2,196
    #10
    Matisse20 said:

    THANK YOU!
    Thank you for all your input!!! Ironically my Dad was admitted to the hospital today with a distended abdomen and feeling VERY weak. He will be in for 2 - 4 days while they try to get to the bottom of this issue. The good news is that his right lymphoid (the problem child) is almost 100% back to normal!!! They doctor was very very pleased about that fact... For me, it raising a bigger question... Why do they have to radiate when the primary tumor is unknown? Hopefully the doctors can give us a good answer to that one.

    Thank you for all your replies! This is a great forum!!!
    -Margaret

    Somewhat Similar Treatment
    Margaret,

    I did three rounds of induction chemo, followed by chemo-radiation for seven weeks. I was hospitalized during my second round of induction chemo for neutropenic fevers - I developed fevers of unknown origin that my body couldn't regulate. This is not uncommon.

    Very glad to hear about the lymph nodes responding so well to induction chemo.

    It's my understanding that they want to radiate to wipe out any cells that may be cancerous, but have not yet developed into a tumor you can "spot". My docs told me that chemo would knock cancer down, and radiation would finish it off (ideally). Even though the primary's unknown (and may very well have been eliminated by the body), there could be cancerous cells in the area that just aren't big enough or active enough at this time to show up in scans.

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