Beginning radiation treatment and scared

firstsister
firstsister Member Posts: 13
edited March 2014 in Uterine/Endometrial Cancer #1
I was diagnosed with stage 3-C UPSC in Oct. 2010 after complete hysterectomy. Had three cycles of chemo (carboplatin and taxol) and did quite well. Blood numbers good. Start radiation treatment on Monday, Jan. 10 5 weeks M-F. Then more chemo. I'm really nervous about the radiation and its side effects both immediate and long term. Any words of wisdom? or about similar experience?

Pat

Comments

  • hopeful girl 1
    hopeful girl 1 Member Posts: 454
    #2
    I had the same treatment 3 chemos/24 radiations/3 chemos
    Pat,

    Hi there.

    I hope I can help put your mind at ease. I finished my sixth chemo in November. I had the same protocol-3 chemos 3 weeks apart, then a small break while they got my radiation plan ready, then 5 weeks of radiation, a couple weeks break, and then 3 more chemos, three weeks apart.
    In July-August I had my 25 radiation treatments which were Monday-Friday for 5 weeks.
    I was absolutely terrified to go for radiation. I was so intimidated by the whole idea of it.

    It is painless. You don't feel a thing. You will hear the machine make some noises as it moves around you (it does not touch you) and as it radiates the area, you will hear a buzzing. I used to count the buzzes so that I would know when I was done. I can't remember how many zaps I got-I think it was something like 14-because they did each area twice on me. Don't let the word zap scare you-that's just what I call it.

    I did experience some diareah after a couple of weeks, and so I was told to use immodium for that, and I felt alittle queasy after radiation, so I would bring crackers and eat on the way home. A few weeks in I felt very tired, which I was warned would happen because they were radiating a large area on me-because I had some higher lymph nodes removed.

    You will get thru it just fine. They will probably give you a list of certain foods to avoid etc.

    Good luck and you will do just great!

    Hugs,
    Cindy
  • jazzy1
    jazzy1 Member Posts: 1,379
    #3
    hopeful girl 1 said:

    I had the same treatment 3 chemos/24 radiations/3 chemos
    Pat,

    Hi there.

    I hope I can help put your mind at ease. I finished my sixth chemo in November. I had the same protocol-3 chemos 3 weeks apart, then a small break while they got my radiation plan ready, then 5 weeks of radiation, a couple weeks break, and then 3 more chemos, three weeks apart.
    In July-August I had my 25 radiation treatments which were Monday-Friday for 5 weeks.
    I was absolutely terrified to go for radiation. I was so intimidated by the whole idea of it.

    It is painless. You don't feel a thing. You will hear the machine make some noises as it moves around you (it does not touch you) and as it radiates the area, you will hear a buzzing. I used to count the buzzes so that I would know when I was done. I can't remember how many zaps I got-I think it was something like 14-because they did each area twice on me. Don't let the word zap scare you-that's just what I call it.

    I did experience some diareah after a couple of weeks, and so I was told to use immodium for that, and I felt alittle queasy after radiation, so I would bring crackers and eat on the way home. A few weeks in I felt very tired, which I was warned would happen because they were radiating a large area on me-because I had some higher lymph nodes removed.

    You will get thru it just fine. They will probably give you a list of certain foods to avoid etc.

    Good luck and you will do just great!

    Hugs,
    Cindy

    Radiation
    As with Cindy, I had the same protocol of treatments. Radiation isn't as bad as many make you believe. I'm assuming you'll be having "external" radiation and to the pelvic area? If so this is what I had as well, and know the docs will tell you within 2 weeks after the start you'll need to avoid as much roughage as possible. Plus it's cummulative and as time goes on, you'll be very tired. Now I'm a person with Lots of energy and after 3 weeks I was dragging my wagon big time.

    I had my last radiation treatment July '09 and today have some issues with my bowels, but very doable. Just know when I eat certain foods, the bowels are especially fast...catch my drift?

    Don't be scared as it's part of our treatments. Think positive and ask lots of questions of your docs and RNs...they can give you some hand-holding to get you through.

    Best to you and keep us posted on your progress...we care!
    Jan
  • susafina
    susafina Member Posts: 131
    #4
    jazzy1 said:

    Radiation
    As with Cindy, I had the same protocol of treatments. Radiation isn't as bad as many make you believe. I'm assuming you'll be having "external" radiation and to the pelvic area? If so this is what I had as well, and know the docs will tell you within 2 weeks after the start you'll need to avoid as much roughage as possible. Plus it's cummulative and as time goes on, you'll be very tired. Now I'm a person with Lots of energy and after 3 weeks I was dragging my wagon big time.

    I had my last radiation treatment July '09 and today have some issues with my bowels, but very doable. Just know when I eat certain foods, the bowels are especially fast...catch my drift?

    Don't be scared as it's part of our treatments. Think positive and ask lots of questions of your docs and RNs...they can give you some hand-holding to get you through.

    Best to you and keep us posted on your progress...we care!
    Jan

    Radiation
    Hi Pat,

    As everyone posted above you will get through it. It is scary of course it is but know that it is getting rid of any bad cells.
    I thought that the last week was the hardest because I developed diarrhea anf felt real tired. Like Cindy said Immodium works well. Just avoid eating too much roughage or fiber. I was advised no raw vegetables or gassy foods. That did help.
    Make sure you moisturize your skin with gentle lotions like aveno, eucerin or aquaphor. I am sure that they will tell you all that.
    Just take it easy because you will feel tired, just going everyday is tiring enough. Have them play music you like bring your favorite CD's. The treatments are quick but it is nice to hear music you like. Remember it will be OK.
    SUE
  • nancygt
    nancygt Member Posts: 86
    #5
    radiation diarrhea
    Good advice from the other ladies -only real side effect I had was the diarrhea and they ended up giving me Lomotil for a while and then switched to another antidiarrhea drug as they don't want you on Lomotil too long. The nutritionist at the hospital did go over a food list and I tried to follow that. I had both the six weeks of external radiation and 3 brachytherapy treatments (as many of the others,those were "sandwiched" in between 2 rounds of carboplatin/Taxol).
    I did have some GI problem about six months later and they did another colonoscopy and said there was some scarring-said they hoped it would get better over time with no more raidation planned for that area. Now I take a probiotic (replaces good bacteria which often gets killed off during treatment and is replaced in the body by some people not all). My friend who has had multiple treatments for late stage lung cancer also takes a probiotic -you might ask doctor about it.The other product I find helpful is taking some liquid antidiarrheal every morning as this was suggested by my gastroenterologist who had experience with cancer patients during his residency at Johns Hopkins.I buy store brands at CVS or Walgreens as they have a cherry liquid and Immodium only seems to make thick mint flavored, which is not my personal preference. Plus it is cheaper and has helped me.
    Good luck on your treatment. I have also had IMRT to my para-aortic lypmh nodes for a recurrence -had no real problems there, other than may be a bit of fatigue, and it did give me a clean PET scan after the treatment.
  • norma2
    norma2 Member Posts: 479
    #6
    nancygt said:

    radiation diarrhea
    Good advice from the other ladies -only real side effect I had was the diarrhea and they ended up giving me Lomotil for a while and then switched to another antidiarrhea drug as they don't want you on Lomotil too long. The nutritionist at the hospital did go over a food list and I tried to follow that. I had both the six weeks of external radiation and 3 brachytherapy treatments (as many of the others,those were "sandwiched" in between 2 rounds of carboplatin/Taxol).
    I did have some GI problem about six months later and they did another colonoscopy and said there was some scarring-said they hoped it would get better over time with no more raidation planned for that area. Now I take a probiotic (replaces good bacteria which often gets killed off during treatment and is replaced in the body by some people not all). My friend who has had multiple treatments for late stage lung cancer also takes a probiotic -you might ask doctor about it.The other product I find helpful is taking some liquid antidiarrheal every morning as this was suggested by my gastroenterologist who had experience with cancer patients during his residency at Johns Hopkins.I buy store brands at CVS or Walgreens as they have a cherry liquid and Immodium only seems to make thick mint flavored, which is not my personal preference. Plus it is cheaper and has helped me.
    Good luck on your treatment. I have also had IMRT to my para-aortic lypmh nodes for a recurrence -had no real problems there, other than may be a bit of fatigue, and it did give me a clean PET scan after the treatment.

    I found the radiation to
    I found the radiation to have a few unpleasant side effects. They lasted a few weeks and then I felt much better. Some industrial strength diahrrea that Immodium helped to keep under control. Fatigue for about 6 months. I feel great now and have had 3 month check ups that are no evidence of disease. Last radiation treatment for me was Dec. 21, 2009.

    Hardest thing was to eat a low fiber diet. That was the recommendation of the nutritionist while I was having the radiation. I love salads and fresh veggies and fruits. I craved them. Now I eat anything I want. Time heals.

    Will be thinking of you and sending you lots of positive vibes. You can do this...never give up.
  • stloosandi
    stloosandi Member Posts: 9
    #7
    radiation
    I just finished 3 rounds of internal radiation (cuff radiation) during holidays and the most painful part for me was the various probes and the actual cuff which had to remain in place for over 3 hours as they did the planning. Also, my first visit, they only had a real narrow and terribly hard stretcher to lie on, so my back felt horrible but once it was all done...no other pain. Of course I have been very fatigued from it and am just starting to notice some bowel differences ( it worries me mostly that this issue can linger quite some time) but as the others have said...be prepared for either constipation..or the runs! I have not had this yet but understand it may come even months later. For me, I simply have had to have regular BM more frequently throughout the day and I am on my 3rd round of meds for a UTI.
    Know that we all are rooting for you and hope you breeze through!
    Sandi
  • firstsister
    firstsister Member Posts: 13
    #8
    stloosandi said:

    radiation
    I just finished 3 rounds of internal radiation (cuff radiation) during holidays and the most painful part for me was the various probes and the actual cuff which had to remain in place for over 3 hours as they did the planning. Also, my first visit, they only had a real narrow and terribly hard stretcher to lie on, so my back felt horrible but once it was all done...no other pain. Of course I have been very fatigued from it and am just starting to notice some bowel differences ( it worries me mostly that this issue can linger quite some time) but as the others have said...be prepared for either constipation..or the runs! I have not had this yet but understand it may come even months later. For me, I simply have had to have regular BM more frequently throughout the day and I am on my 3rd round of meds for a UTI.
    Know that we all are rooting for you and hope you breeze through!
    Sandi

    Thank you all so much
    Many thanks, Cindy, Jan, Sue, Nancy, Norma, Sandi for the encouraging words and good advice and suggestions. I feel much better going into this external radiation treatment. I've had a CT scan and simulation and go tomorrow so they can take "films" of the treatment area. First treatment Tuesday. I'll be sure to stock up on the Immodium and I have a list of some low fiber foods. So, here we go. Many thanks again. You are all wonderful, caring, brave ladies.

    Pat
  • susafina
    susafina Member Posts: 131
    #9
    firstsister said:

    Thank you all so much
    Many thanks, Cindy, Jan, Sue, Nancy, Norma, Sandi for the encouraging words and good advice and suggestions. I feel much better going into this external radiation treatment. I've had a CT scan and simulation and go tomorrow so they can take "films" of the treatment area. First treatment Tuesday. I'll be sure to stock up on the Immodium and I have a list of some low fiber foods. So, here we go. Many thanks again. You are all wonderful, caring, brave ladies.

    Pat

    Radiation
    Hi Pat,
    Just want to say good luck on tuesday and keep us posted about how you are doing!! Remember that after radiation you will have a special that will light up any room!!A little radiation humor. My thought will be with you.
    SUE
  • wannaknow
    wannaknow Member Posts: 12
    #10
    susafina said:

    Radiation
    Hi Pat,
    Just want to say good luck on tuesday and keep us posted about how you are doing!! Remember that after radiation you will have a special that will light up any room!!A little radiation humor. My thought will be with you.
    SUE

    radiation
    Hi... I too had the 6 chemo's, carbo/taxol. then 35 external radiations and 1 vaginal radiation. I did the chemo first... then radiation. I did have very loose stools.. immodium worked pretty good, they will tell you that you can actually take 8 per day ...i never needed that much tho. :-) you will feel tired. Also, ask for zofran incase you feel sick. I only did one time. I did pretty good with radiation... the last treatment was December 20th. (that was the vaginal one) and the worst part of that was having to hold my pee while doing the cat scan and the 8 min treatment..lol... It didnt hurt at all. Neither did radiation.. :-) DONT BE SCARED...ITS NOT BAD AT ALL MY FRIEND!
    Love,Kim
  • bonniesue
    bonniesue Member Posts: 124 Member
    #11
    firstsister said:

    Thank you all so much
    Many thanks, Cindy, Jan, Sue, Nancy, Norma, Sandi for the encouraging words and good advice and suggestions. I feel much better going into this external radiation treatment. I've had a CT scan and simulation and go tomorrow so they can take "films" of the treatment area. First treatment Tuesday. I'll be sure to stock up on the Immodium and I have a list of some low fiber foods. So, here we go. Many thanks again. You are all wonderful, caring, brave ladies.

    Pat

    firstsister pat-- food with radiation and thoughts
    Always found it good to keep soda crackers, baby food like banana, pear etc. can get organic if you like. Recharge fluid from Whole Foods (like organic Gatoraide), bland mashed potatoes, broth...immodium, prescription zofran under the tongue for nausea, extra toliet paper or change of clothes in car just in case. Ask the doc for something to relax you to take prior to the procedure and prayer and meditation. AND REST AND SLEEP if you feel tired! Great CD Andrew Weil/ Anne Marie Chaisson-- the track with Heart Meditation. As one of the radiation oncs told us think of it as rays of curing sunshine. God bless you and it will go by quickly. Bonniesue

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