Side effects from chemo & radiation?

needhope1
needhope1 Member Posts: 29
edited March 2014 in Head and Neck Cancer #1
My husband has Stage IVa SCC of the left tonsil and lymph nodes. He had surgery to remove both 2 weeks ago, and now has been prescribed 8 weeks of chemo (carboplatin & taxol) and 8 weeks of radiation and chemo. From what I have heard from the oncologist is that it is not the day of the treatments that you feel terrible but a day or 2 after? Is this true? How quickly do you recover from each treatment? My husband plans to get his treatment on Thursdays so he can recup on the weekends and be ready to go back to work on Mondays...does this sound realistic?

I thought that chemo was supposed to be worse in regards to side effects, but the more I hear and read it is the radiation that is worse?

Here is what I got from the Oncologist, hair loss from the chemo will be about 3 weeks after starting the chemo, nausea from chemo, fatigue, weight loss. Side effects from radiation -- burns, mouth sores, difficulty swallowing, more weight loss...

Do these side effects seem correct? What else can we expect? Did you miss alot of work while going through your treatments?

Thanks.

Comments

  • TIM_WWJD
    TIM_WWJD Member Posts: 38
    #2
    To Needhope1
    Me Again
    I posted to another link you had but you didn't have these questions. Not everyone has the same effects so this is always tough to compare apples to apples. I recieved the same two drugs on Monday and wore a pump getting 5FU for five days at home. Then I got two weeks off before the next round. This went for three cycles. I can't tell from what you wrote if this is what your husband is doing. If so it is true the first couple of days were okay but for me the next two weeks I was down. I tried to work also and it finally worked out that every third week I could work a couple of hours per day. Some people on this sight have been able to work through this whole thing so there you have the apples to apples issue. My sugestion is health first work last. As for side effects I took my medications as recomended and the biggest one was the awful taste of metal. i battled that with peppermint candy, I chose sugar free to guard against the future tooth issue. Your husbands taste buds will be a mess and some things he likes now will not sound good. Get plenty to eat as the metabilism is rased with these drugs killing cells. And plenty of fluids. As for hair loss I started losing mine after three weeks and it was such a mess in the shower i finally shaved it off. I am now getting some stubble back while I am on the radiation/chemo part of my treatment. He will be fatigiued because the chemo is killing fast growing cells which is the cancer but we have cells that grow fast it also kills, red & white blood cells, cells in our mouth and hair growing cells. The red cells are what carry oxygen so that is why the fatigue. As for the burns from radiation I am two thirds done and it isn't bad as I said my big issue is mouth sores and it is just a matter of managing the pain. I am a big fan of my PEG tube also. I was able to add fluids even if I didn't feel like drinking even when I could swollow. I hope this helps you.
    Tim
  • SASH
    SASH Member Posts: 421 Member
    #3
    Not everyone has the same side effects
    Needhope,

    Like Tim said, everyone is different. Because of my radiation, I was unable to turn my head so I was unable to drive for at least 3 1/2 months after radiation ended. I was unable to work at all during my treatments which consisted of 10 weekly chemos and 46 daily radiation treatments. Because my numbers were low on several occasions I was unable to get my chemo every time I was supposed to thus it went on past when it should have been over. My hair started to slowly thin and fall out during treatment, but it wasn't until about 2 weeks after I had completed my chemo that it was so patchy that I had it cut really short so you wouldn't see the patches. Once it started growing back in, I had an SOS pad on top of my head and my Rad Oncologist even said if I had some detergent he could scrub pots.

    There might be mouth sores, pain swallowing, low saliva production, high saliva production, etc. Each case is individual and you have to deal with the hand that you are dealt.

    Humor and a positive attitude really helps get through this ordeal. I am now 9+ years out from the end of treatment where I licked stage 4 tongue cancer.
  • JGE
    JGE Member Posts: 51
    #4
    Once it gets bad, it gets bad
    It takes a couple weeks after treatment starts before it kicks in, but then it goes down hill quickly. Just when you think it can't get any worse, you finish treatments... and then the really bad part starts.

    After that it finally takes a turn. Now looking back it seems almost like a bad dream. At the time it felt like it would never end, but now, 6 mos after the last treatment, my memory is already fading. I know it happened, but its over.

    This is how it will be for you too. Hopefully the fact that all the people on this site, and thousands of others went thru it and made it will help you see the light at the end of the tunnel. It is true, if you have to have cancer... this is the one to have. The treatment is very difficult and aggressive, but the treatment is quick and the survival rate is high.

    Think about it, 2 to 3 months of treatment and then you heal and get back to (a new) normal. What other cancer is like that? I see people 'battling' cancer with treatments that go on for a year or more. By then you would forget about normal. 6 months out and I have people look at me and don't know I was sick! Or they heard about me and expected the worst and then when they see me they are like "we heard you had cancer", and I get to say "I did!" as in past tense.

    My wife was the main reason I was able to get thru treatments. She was very strong and just took care of business. You are very important in your husbands treatment and recovery. Give him some slack with his words and actions since YOU can see the whole picture and he cannot right now. Actually being the one they are looking at when they say "you have cancer" is WAY different than being the spouse or parent or whatever. It effects everybody, true, but the psychological part of it gets very dark for the person with their own life flashing before their eyes. You are the one that can grasp the fact that the chances are very good that he will live a long life after this is behind you. Three months takes forever while your living it, but it goes by quickly in hindsight. After going thru that you can do anything.
  • Pat_451
    Pat_451 Member Posts: 2
    #5
    JGE said:

    Once it gets bad, it gets bad
    It takes a couple weeks after treatment starts before it kicks in, but then it goes down hill quickly. Just when you think it can't get any worse, you finish treatments... and then the really bad part starts.

    After that it finally takes a turn. Now looking back it seems almost like a bad dream. At the time it felt like it would never end, but now, 6 mos after the last treatment, my memory is already fading. I know it happened, but its over.

    This is how it will be for you too. Hopefully the fact that all the people on this site, and thousands of others went thru it and made it will help you see the light at the end of the tunnel. It is true, if you have to have cancer... this is the one to have. The treatment is very difficult and aggressive, but the treatment is quick and the survival rate is high.

    Think about it, 2 to 3 months of treatment and then you heal and get back to (a new) normal. What other cancer is like that? I see people 'battling' cancer with treatments that go on for a year or more. By then you would forget about normal. 6 months out and I have people look at me and don't know I was sick! Or they heard about me and expected the worst and then when they see me they are like "we heard you had cancer", and I get to say "I did!" as in past tense.

    My wife was the main reason I was able to get thru treatments. She was very strong and just took care of business. You are very important in your husbands treatment and recovery. Give him some slack with his words and actions since YOU can see the whole picture and he cannot right now. Actually being the one they are looking at when they say "you have cancer" is WAY different than being the spouse or parent or whatever. It effects everybody, true, but the psychological part of it gets very dark for the person with their own life flashing before their eyes. You are the one that can grasp the fact that the chances are very good that he will live a long life after this is behind you. Three months takes forever while your living it, but it goes by quickly in hindsight. After going thru that you can do anything.

    Treatments
    My husband in taking his treatment right now. On the 3rd of April we went to the hospital for what we thought was a routine surgery. He had a swollen lymph node and they thought the infection had settled there. When they opened him they found Squamous cell cancer. The dr. would not tell us anything afterwards we found out that with all the cancer he found he thought that my husband was full of it. They did a pet scan and his primary is at the base of his tongue and it's also on the other side of his neck.
    He has 7 weeks 5 days a week of radiation. He did have cisplastin chemo, but it was too strong for him, it tore up his kidney's and they had to put him back in the hosptial. We went on Thursday for our next chemo and he said no, he was changing the chemo. Now we go once a week. He is still able to swallow food, but he however has a feeding tube. The outside of his face is soooo red and he says it hurts bad. He has already lost 15 pounds and is often weak. I try to do everything for him I can. I wash him, I cook and cut up his food and take it to him. I do all I can. I am still working about 40 hours a week and taking him everyday for treatment. I am so grateful that I can do this for him. I try to keep his spirit high but there are sometimes when I have to get a break and let it go for myself. I am in 12 step programs so I find that a good outlet for me. I am looking forward to many good discussions and help here.
    Pat
  • pennynl4
    pennynl4 Member Posts: 49
    #6
    SASH said:

    Not everyone has the same side effects
    Needhope,

    Like Tim said, everyone is different. Because of my radiation, I was unable to turn my head so I was unable to drive for at least 3 1/2 months after radiation ended. I was unable to work at all during my treatments which consisted of 10 weekly chemos and 46 daily radiation treatments. Because my numbers were low on several occasions I was unable to get my chemo every time I was supposed to thus it went on past when it should have been over. My hair started to slowly thin and fall out during treatment, but it wasn't until about 2 weeks after I had completed my chemo that it was so patchy that I had it cut really short so you wouldn't see the patches. Once it started growing back in, I had an SOS pad on top of my head and my Rad Oncologist even said if I had some detergent he could scrub pots.

    There might be mouth sores, pain swallowing, low saliva production, high saliva production, etc. Each case is individual and you have to deal with the hand that you are dealt.

    Humor and a positive attitude really helps get through this ordeal. I am now 9+ years out from the end of treatment where I licked stage 4 tongue cancer.

    So happy for you
    Indeed there is hope after reading your post. My husband has been diagnosed with Stage lV squamous cell carcinoma tongue cancer. It spread to his lymph node which was removed 2 1/2 weeks ago. He will start chemo and radiation the last week of June. Was this the same kind of cancer that you had? We are so scared and fearful of the treatment and also the survival rate.

    Your post gives me some encouragement which we both need right now.
  • SASH
    SASH Member Posts: 421 Member
    #7
    pennynl4 said:

    So happy for you
    Indeed there is hope after reading your post. My husband has been diagnosed with Stage lV squamous cell carcinoma tongue cancer. It spread to his lymph node which was removed 2 1/2 weeks ago. He will start chemo and radiation the last week of June. Was this the same kind of cancer that you had? We are so scared and fearful of the treatment and also the survival rate.

    Your post gives me some encouragement which we both need right now.

    Yes, this is the same form
    Yes, this is the same form that I had. Because mine was so involved in my tongue they had to do treatment in reverse. So I had the simultaneous rads and chemo prior to surgery. Luckily the chemo and rads did the trick and while surgery was supposed to replace 85-90% of my tongue with muscle from my stomach, but all they found in the deep tissue biopsies was scar tissue and dead cancer cells.

    Good luck to you and your husband.
  • Fireman
    Fireman Member Posts: 39
    #8
    Treatments
    You can expect more or less side effects depending on your your husbands genetics. I attempted to do as he did and have treatments on Thursdays to recuperate over the weekend and go back to work on Monday. I did have to where a pump with 5FU over the weekend so rested all weekend. I did well with this through chemo and went to work as planned. When radiation came around and my neck began to burn and peel, I was told not to come back to work. Subsequently I could not swallow without throwing up or experiencing pain so had to have a PEG Tube inserted. My Oncologist would not let me go back to work for 6 weeks. I was able to work from home on the computer, but was told I should have spent my energy on healing and not on working. In March of this year I was just released to go back to work 40 hours per week. It started off at 4 hours per day for 3 months, then 6 and now 8. I experienced mouth sores, yeast infections, bacterial infection in my throat, sensitivity to cold in my mouth, not being able to brush my teeth without gagging or throwing up, throwing up at certain smells and fragrances,50 pound weight loss, PICC line infection, clot, and a DVT. Each day I said to myself I'm getting better. All of it is just a memory right now. I tell everyone that I have the right to forget things now because the radiation blasted some of my brain cells. Your husband as have others on this site may not experience any of this. There are things I did not experience like the metallic taste, or tooth problems, so I am lucky in some ways.
    Keep your medical team informed so they can implement preventative or assistive measures to help your husband. You know him so you know what is normal and what is not. You may have to be the one to point these things out because his thinking may be a little altered due to his treament regime. Best wishes to you both and work together to defeat this menance.

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