Quarintined after Chemo

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rmkbrad
rmkbrad Member Posts: 176
edited March 2014 in Head and Neck Cancer #1
First off let me say sorry I have not been on here for a while.I finished my second round of chemo/Cysplatin combo last week. They really nocked the crap out of me this time, really been having a harder time than last. Anyway go back down to San Francisco January 24 for a PET/CT scan and then a MRI on the 25th. Then a meeting with the braceytherapy radiologist on the 26th. If the test resuts are good I might forgo the third chemo treatment and go to radiation since the chemo has really effected my hearing, bad tenitis the first treatment and worse with muffled hearing this time. Anyway this time my mood has been really crappy, I just feel pissed off all the time, really frustrated and angry. My poor family has been dealing with me. I realize that I am not in a good mood and try to control my anger. The emotions this full round of chemo/radiation has been way different than last year when I went through IMRT radiation/carboplatin chemo combo. Sorry for the rant.

Brad

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  • Hondo
    Hondo Member Posts: 6,636 Member
    #2
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    Hi Brad

    I know where you are coming from, as I too had a hard time during treatment
  • Hal61
    Hal61 Member Posts: 655
    #3
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    Mood
    Hi Brad, I'm hoping this is your last run, and that your next scans will indicate no further treatment is needed. I also have tinnitus and hearing loss from cisplatin. Hope you are getting something to help with your emotions and anger. Your system has taken a beating, and anything or anybody gets irritated when it's constantly challenged. Very best to you.

    Hal
  • rmkbrad
    rmkbrad Member Posts: 176
    #4
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    Hal61 said:

    Mood
    Hi Brad, I'm hoping this is your last run, and that your next scans will indicate no further treatment is needed. I also have tinnitus and hearing loss from cisplatin. Hope you are getting something to help with your emotions and anger. Your system has taken a beating, and anything or anybody gets irritated when it's constantly challenged. Very best to you.

    Hal

    Being able to eat
    I was so nice after my first treatment, the third week I was off I was finally able to eat. I mean really eat, I havent been able to eat that good in over 7 months. I was down to 162 pound and was able to get back up to 180 before my second treatment. Now back down to 161 which is alot from my original 282 this time last year. I never want to be that heavy again but would like to put 30 pound of muscle back on. Such a weakling now.

    Brad
  • DrMary
    DrMary Member Posts: 531 Member
    #5
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    rmkbrad said:

    Being able to eat
    I was so nice after my first treatment, the third week I was off I was finally able to eat. I mean really eat, I havent been able to eat that good in over 7 months. I was down to 162 pound and was able to get back up to 180 before my second treatment. Now back down to 161 which is alot from my original 282 this time last year. I never want to be that heavy again but would like to put 30 pound of muscle back on. Such a weakling now.

    Brad

    Puttin' on the Muscle
    That's where Doug is - he was pretty much all muscle at 175 and got down to 140 after the second chemo. He was polite and let me advise him in his training for the first few weeks of recovery, but then switched over to a real trainer - one who had experience in rehab.

    Building back muscle is different from building it the first time. Pushing to build back muscle too fast causes strain on your other connective tissue (like tendons and such) and you can end up irritating or even tearing them up. So, your first few months, you have to concentrate more on mobility first, strength second and not worry about bulk (that will come).

    If you are working with weights, keep them low and keep the reps and sets high (like 4 sets of 12 versus 2 sets of 6). If you are counting on getting back in shape with your daily chores or sports, you will need to start very slow. Again, the time doing the exercise is more important than the difficulty of the exercise. In either case, form is crucial. If you find yourself straining to do something and calling in other muscles to help, you will hurt something and your recovery will take even longer.

    You won't be weak forever - it just seems that way.
  • mixleader
    mixleader Member Posts: 267 Member
    #6
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    Chemo Crap
    Hi, Brad. So far, I have not had to be subjected to chemo, so I don't know how that feels, but I have had beam radiation and radioactive seed implants (Brachytherapy). I can certainly understand your anger and frustration as I have felt this also. Whenever I was feeling angry/cranky, I would just keep reminding myself that it sure wasn't the fault of the loving and caring people around me and if I couldn't find something good to say, I would just keep my mouth shut. It certainly is hard. I wish you the best of luck and keep fighting.

    Roger
  • rmkbrad
    rmkbrad Member Posts: 176
    #7
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    mixleader said:

    Chemo Crap
    Hi, Brad. So far, I have not had to be subjected to chemo, so I don't know how that feels, but I have had beam radiation and radioactive seed implants (Brachytherapy). I can certainly understand your anger and frustration as I have felt this also. Whenever I was feeling angry/cranky, I would just keep reminding myself that it sure wasn't the fault of the loving and caring people around me and if I couldn't find something good to say, I would just keep my mouth shut. It certainly is hard. I wish you the best of luck and keep fighting.

    Roger

    Hey mixleader
    How was the Brachytherpy radiation, sounds like I will have wires or somthing hanging out of the tubes they put in around my jaw line. Have read somthings about it but still have questions. Like does it kick your but like IRMT and how was the hospital stay?

    Brad
  • mixleader
    mixleader Member Posts: 267 Member
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    rmkbrad said:

    Hey mixleader
    How was the Brachytherpy radiation, sounds like I will have wires or somthing hanging out of the tubes they put in around my jaw line. Have read somthings about it but still have questions. Like does it kick your but like IRMT and how was the hospital stay?

    Brad

    Achy Brachy Therapy
    Hi, Brad. Actually, my Brachytherapy was for a location a bit farther south. I had Brachytherapy for my prostrate cancer before I had beam radiation for my Parotid cancer.

    Roger.
  • susan0803
    susan0803 Member Posts: 90
    #9
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    mixleader said:

    Achy Brachy Therapy
    Hi, Brad. Actually, my Brachytherapy was for a location a bit farther south. I had Brachytherapy for my prostrate cancer before I had beam radiation for my Parotid cancer.

    Roger.

    cisplatin - 3rd round
    Hi Brad,
    Just letting you know I had posted back in Oct asking for advice about my husbnad not wanting the 3rd cisplatin. My husband too had bad hearing loss/tinitus and chose not to get the 3rd chemo. He had the backing of the radiation oncologist and felt the medical onc wasn't that convincing to her reasons why he should get it either. The 2nd round of the cisplatin really knocked it out of him too - almost to the point that he looked like a walking ghost.

    Funny (or not so funny), after his treatments were done, both the medical and radiation onc commented how well/fast he was healing (that's all relative of course). But the med onc made a funny rather snide comment almost indicating that yeah he was healing fast, cause he didn't endure the 3rd chemo. Go figure.

    Suzanne
  • Hal61
    Hal61 Member Posts: 655
    #10
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    susan0803 said:

    cisplatin - 3rd round
    Hi Brad,
    Just letting you know I had posted back in Oct asking for advice about my husbnad not wanting the 3rd cisplatin. My husband too had bad hearing loss/tinitus and chose not to get the 3rd chemo. He had the backing of the radiation oncologist and felt the medical onc wasn't that convincing to her reasons why he should get it either. The 2nd round of the cisplatin really knocked it out of him too - almost to the point that he looked like a walking ghost.

    Funny (or not so funny), after his treatments were done, both the medical and radiation onc commented how well/fast he was healing (that's all relative of course). But the med onc made a funny rather snide comment almost indicating that yeah he was healing fast, cause he didn't endure the 3rd chemo. Go figure.

    Suzanne

    Figure
    Hi Suzanne, I can understand your husband's decision. I recently said no thanks to a 2nd round of chemo. My medical onc was recommending it after three of 15 lymph nodes after my dissection showed traces. But they were clustered right around the initial BOT tumor. I've had radiation also. So, no solid proof of any cancer at that point, and my med onc admitted that there was no data to show a 2nd round was warranted, knowing only what we did.

    He emphasized that only one tiny cell is enough, which I know. The docs, to over-generalize--err on the side of survival, and sometimes they are themselves conflicted--maybe that's why the comment. The side effects of these treatments to head and neck are potentially lasting and disabling, and you can't just opt to have procedures or regimens without weighing carefully what is being gained and at what cost.

    Great pic. I assume a mask is getting hit with the gong hammer.

    best, Hal
  • buzz99
    buzz99 Member Posts: 404
    #11
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    Pissed off all the time
    Anyone who endures this treatment deserves to be angry and a bit of ranting is good for you! My husband, Buzz, gets really quiet and depressed at times. Buzz did not have the third round of chemo (Taxotere, Cisplatin, and 5FU) because it was so toxic that he ended up in the hospital for a week after each round. Our Oncologist decided to cancel the third round and we agreed. The side effects outweigh the questionable benefits of a third round.
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #12
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    Hang in there Brad
    Stay tough! Sending healing thoughts your way from the other side of the mountain.

    Deb
  • dennis318
    dennis318 Member Posts: 349 Member
    #13
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    buzz99 said:

    Pissed off all the time
    Anyone who endures this treatment deserves to be angry and a bit of ranting is good for you! My husband, Buzz, gets really quiet and depressed at times. Buzz did not have the third round of chemo (Taxotere, Cisplatin, and 5FU) because it was so toxic that he ended up in the hospital for a week after each round. Our Oncologist decided to cancel the third round and we agreed. The side effects outweigh the questionable benefits of a third round.

    same here
    they kept me on my radiations, and cancelled my chemos....I was losing to much weight, they where killing me, and the doctors stopped the chemmo to save my ****...if you know what I mean..Take care Buzz, you have a great Partner there!!!..Dennis
  • rmkbrad
    rmkbrad Member Posts: 176
    #14
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    D Lewis said:

    Hang in there Brad
    Stay tough! Sending healing thoughts your way from the other side of the mountain.

    Deb

    Thanks everyone
    My docs don't question my decisions, after treating me for a year now they now my temperment. Like when they wanted to cut my tongue out, after one of them asked for a third time and I responded are your F****ing ears pluged, you didn't hear me the first two times, no means no. I read alot and am always full of information and questions when they see me, so they don't try to feel me some crap.

    Brad

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