My radiation journey - Week 5

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  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #22
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    You are so sweet, Susan.

    You are so sweet, Susan. Thank you for your wishes. I'm glad we are all in this together, both the past and present, because the wisdom helps those of us going through treatment, and gives us the encouragement to continue to the finish line.  I plan to be around to help others as so many have helped me. Steven, thinking of you buddy, and waiting for a joke. You can do it :-)

  • MrsBD
    MrsBD Member Posts: 617 Member
    #23
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    To those going through treatment now

    My heart just aches for those of you going through treatment now and I pray for you daily. It just gets worse and worse; then when you think it can't possibly get worse, it still does! Keep your eyes on the prize - the defeat of this terrible disease. For many of us, the week or so after treatment ended was the hardest and then recovery finally began. It has been 20 months and 17 days since my last treatment. (not that I'm counting ☺) Keep eating and drinking what you can, and don't feel guilty if you need medication to help you through. It will get better!

  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #24
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    MrsBD, I came home and was so

    MrsBD, I came home and was so surprised at how tired I was feeling. Crashed and slept for two hours. Thanks for the prayers. Hoping Steven's day was tolerable. 

  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #25
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    Steven???  I am getting

    Steven???  I am getting worried about you.  Hope you're just resting and not suffering unduly.

  • swopoe
    swopoe Member Posts: 492
    edited June 2016 #26
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    My husband said that the very

    My husband said that the very, very end was the worst. But then things got better. Steven you can do this! Pulling for you, friend!

  • stevenpepe
    stevenpepe Member Posts: 234
    #27
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    I am resting and suffering

    I am resting and suffering like so many here. Things could be worse but I'm definitely dealing with the worst of this. Just 6 more treatments.

  • cardoza33
    cardoza33 Member Posts: 81
    #28
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    stevenpepe said:

    I am resting and suffering

    I am resting and suffering like so many here. Things could be worse but I'm definitely dealing with the worst of this. Just 6 more treatments.

    Hang it there.  Remember, don

    Hang it there.  Remember, don't be afraid to use the pain meds.  I tried to be tough, worried about all the addiction stories with opiodes.  I am a criminal defense attorney so I see it daily.  (I was able to get off them without issues.)  But finally someone told me not to suffer and I started using them more frequently and boy did they help me get rest and not be in pain.  You heal better when you are not in pain.  Sleeping is good.  Do alot of it.  Get through the treatment and while the physical recovery may take time, I found that simply not having to go to the cancer center everyday was nice and relaxing. I could focus on sleeping, eating..kinda, recovery.  Good luck to all of you.  My last treatment was Feb 3rd so its very vivid in my mind.  Tony

  • BigTimmy89
    BigTimmy89 Member Posts: 2
    #29
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    cardoza33 said:

    Hang it there.  Remember, don

    Hang it there.  Remember, don't be afraid to use the pain meds.  I tried to be tough, worried about all the addiction stories with opiodes.  I am a criminal defense attorney so I see it daily.  (I was able to get off them without issues.)  But finally someone told me not to suffer and I started using them more frequently and boy did they help me get rest and not be in pain.  You heal better when you are not in pain.  Sleeping is good.  Do alot of it.  Get through the treatment and while the physical recovery may take time, I found that simply not having to go to the cancer center everyday was nice and relaxing. I could focus on sleeping, eating..kinda, recovery.  Good luck to all of you.  My last treatment was Feb 3rd so its very vivid in my mind.  Tony

    How long did your side effects last?

    I am 5 of 6 weeks done with cisplatin and only have 7 more radiations to go.  I have some throat pain, still eating full diet. Nausea and fatigue have been bad.  week one was really bad, week two ok, week three was pretty good, week 4 was beyond bad and tired. Fingers crossed for this weekend.  I am a 27 yr old male 6'6"  started at 284 lbs down to 268.  I am wondering how long I can expect the fatigue and nauseau to persist? I am anxious to get outdoors and enjoy the summer and fall.  I know the radiation burns will continue to get worse before they improve, even after treatment stops. 

  • BigTimmy89
    BigTimmy89 Member Posts: 2
    #30
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    Little more info

    My cancer is Nasopharangeal cancer.  Docotrs all seem pretty suprised when i tell them the food i have been able to eat.  Everything's taste has been affected but the texture is what is truly awful.  I found the biotene and Brushing numerous times a day help.

  • SusanUES
    SusanUES Member Posts: 125
    #31
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    Timmy, you are in the thick of it now...

    We continue "cooking" for about a month after rads ends.  The month after my six weeks rads was the worst of it all.  But here's the thing...I never stopped going out or going to work.  I was miserable the whole time but...except for the first week after rads...I continued on.  Work, movies, seeing friends, sitting in the park, picnics...it all helped take my mind off the pain and the mental upset.  It "normalized" things for me.  Doc can give you meds for the nausea and Liquid Oxy to sleep at night.  I strongly recommend you enjoy your summer.  By Fall you will be cruising along nicely.

    And Cardoza is right...you really can't get addicted, the docs won't renew meds so quickly.  I was off mine within two months, no problem.

    Best to you Timmy, Steve, Lisa, Gypsy, Joseph, Rottie's Mom and all our warriors undergoing treatment currently!

  • swopoe
    swopoe Member Posts: 492
    #32
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    Ethan, my husband, was also

    Ethan, my husband, was also scared to take the pain meds. But he got off of them quickly and no addiction problems. Don't be afraid to take the meds if you need them to feel better of even if you just need them to help you rest for a bit. Anything to help, is what I told my husband. My best to all the fighters out there!

    as for how long side effects lasted, my husband took off work the week after he finished rads. He slept most of that week. Then he went back to work fulltime. Within a month, he was feeling much better. Now he is 5 months out. Last week we went on vacation. Our days are not consumed by cancer anymore. There are days we don't even mention it at all. He does everything he used to do- work, sing to our kids, garden, hike, eat, everything. Life is back to normal and it is great. Some days it is hard to imagine our family went through all that we did. But we made it. You will too. ❤️

  • LiseA
    LiseA Member Posts: 266
    #33
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    Swopoe, that's really helpful

    Swopoe, that's really helpful. Thank you.

    Steven, I talk about you to my husband as if I know you already. Had actually been quite concerned about how you're doing. Glad to hear from you, but sad that it's so hard, and so close to finish.  I'm day 3 into my fourth week.  seeing more symptoms,  but still eating solids, just not very hungry. I can't imagine feeling normal again. 

  • wmc
    wmc Member Posts: 1,804
    #34
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    Just Wow. You are doing really good, but..........

    Steven, you have and are doing very good. With the time all the treatment is, taking the pain meds most likely will never have any side effects, unless they have had in the past, some are very sensitive to them. I would guess the worst you could get is some constipation and that is easy to deal with. Don't try to handle the pain and let it get ahead of you to where you play catch up. If the pain number goes up, please don't try to suffer through it as that is worse than anything.

    Now I am amazed at what all you can still eat at this point. Remember, just one day at a time, and you are almost at the end of the tunnel...... There is Light.

    Bill

  • Barbaraek
    Barbaraek Member Posts: 626
    #35
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    BigTimmy89 said:

    Little more info

    My cancer is Nasopharangeal cancer.  Docotrs all seem pretty suprised when i tell them the food i have been able to eat.  Everything's taste has been affected but the texture is what is truly awful.  I found the biotene and Brushing numerous times a day help.

    Welcome to the nasopharyngeal club

    that is what my husband had also. There are not as many NPC folks here as tongue cancer, but we walk a similar road. Feel free to message me if you have any questions Timmy. I'll be keeping you in my prayers. Sounds like you are a champ. By week 2 my husband was unable to swallow and had severe mucositis, so I'm impressed you can eat! Hang in there and take it day by day, minute by minute if you have to.

    Barbara

  • cardoza33
    cardoza33 Member Posts: 81
    #36
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    BigTimmy89 said:

    How long did your side effects last?

    I am 5 of 6 weeks done with cisplatin and only have 7 more radiations to go.  I have some throat pain, still eating full diet. Nausea and fatigue have been bad.  week one was really bad, week two ok, week three was pretty good, week 4 was beyond bad and tired. Fingers crossed for this weekend.  I am a 27 yr old male 6'6"  started at 284 lbs down to 268.  I am wondering how long I can expect the fatigue and nauseau to persist? I am anxious to get outdoors and enjoy the summer and fall.  I know the radiation burns will continue to get worse before they improve, even after treatment stops. 

    Everyone is different, but I

    Everyone is different, but I had my last radiation treatment Feb. 3rd and felt like crap until late April.  May I started feeling better each week.  By first week in June I was back to work full time.  In April, despite feeling bad,  I decided I needed to get out more.  So I spent sometime each day trying to do things outside, which I think helped.  Be positive you will get there.

  • cardoza33
    cardoza33 Member Posts: 81
    edited June 2016 #37
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    swopoe said:

    Ethan, my husband, was also

    Ethan, my husband, was also scared to take the pain meds. But he got off of them quickly and no addiction problems. Don't be afraid to take the meds if you need them to feel better of even if you just need them to help you rest for a bit. Anything to help, is what I told my husband. My best to all the fighters out there!

    as for how long side effects lasted, my husband took off work the week after he finished rads. He slept most of that week. Then he went back to work fulltime. Within a month, he was feeling much better. Now he is 5 months out. Last week we went on vacation. Our days are not consumed by cancer anymore. There are days we don't even mention it at all. He does everything he used to do- work, sing to our kids, garden, hike, eat, everything. Life is back to normal and it is great. Some days it is hard to imagine our family went through all that we did. But we made it. You will too. ❤️

    I love this post.  This is

    I love this post.  This is exactly what is happening at my home right now.  My wife and I can not believe what our family went through the last 7 months.  But now, things are feeling back to normal and we are all so blessed and have a renewed look on life.  Each day is a gift now.  Keep up the fight and you will get through it.  It sucks and there are times, particularly in the "recovery" stage when you dont believe it will end, but it does.

  • swopoe
    swopoe Member Posts: 492
    edited June 2016 #38
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    cardoza33 said:

    I love this post.  This is

    I love this post.  This is exactly what is happening at my home right now.  My wife and I can not believe what our family went through the last 7 months.  But now, things are feeling back to normal and we are all so blessed and have a renewed look on life.  Each day is a gift now.  Keep up the fight and you will get through it.  It sucks and there are times, particularly in the "recovery" stage when you dont believe it will end, but it does.

    Yes, every day is a gift. We

    Yes, every day is a gift. We appreciate things so much more now. It is funny how much your outlook changes.

  • Josephwc
    Josephwc Member Posts: 69
    #39
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    Lesions from radiation

    I saw (canker-rid from amazon) product on another feed and just recieved it in the mail.Its made from bee pollen and tastes very strange. I can't remember who posted it before but they said it worked quickly to get rid of those painful lesions. I just used it and it does feel different. I will keep my fingers crossed and hope for the best.  

  • LiseA
    LiseA Member Posts: 266
    edited June 2016 #40
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    Joseph, did you get sores on

    Joseph, did you get sores on your lips also?

  • Josephwc
    Josephwc Member Posts: 69
    #41
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    One small lesion

    I had one small one on the inside upper lip yes. It went away after two days only.  

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