Radiation Treatment - desperation

crick
crick Member Posts: 8
edited March 2014 in Lung Cancer #1
My wife has small cell lung cancer. She has completed her chemo and radiation treatment. The radiation treatment has caused a tremendous amount of pain in her esophagus. The burning in her throat and esophagus is not letting her eat well. The doctor has given her med but they are not helping. I already had to take to emergency and she had to stay in the hospital for a few days due to low potassium and needed a blood transfusion. Has anyone experienced this, for how long and what can be done. I am hoping she does not her permanent damage to her esophagus. Her next radiation treatment is to her brain - I am planning to take to another doctor since the first one I feel did not give the proper care. Can anyone provide some insight in this type of experience. We both are new to this and do not have much direction or support.

Rick

Comments

  • stayingcalm
    stayingcalm Member Posts: 650 Member
    #2
    Radiation burn
    A lot of people swear by the "magic mouthwash" recipe that many doctors prescribe - has she used that? It numbs the throat area, which is supposed to help. I didn't particularly like the numbing feeling so I never used it after the first time, but then, I don't remember having so much pain that eating was a problem. Smooth foods - yogurt, milkshakes, puddings, stuff like that, has she tried eating any of those? Just so you know, the pain from the radiation does go away after a bit, its not a forever thing.
  • hopehope
    hopehope Member Posts: 21
    #3
    Radiation side effects
    My mom had radiation for first time since 1 year she was dx with stage 4 NSCLC. AFter a week the throat pain started and got worse. The medication provided by doctor did not work for her. Some times she cried literally that she dont wnat to eat or swallow anything for the pain. my mom was adviced to take regular pain meds with juice 1 hour before she plans to eat food so that pain meds might help little to swallow. But it is a terrible pain. It usually stays for 2 weeks and once my my mom receovered pain she is alright,can able to eat .My mom stomach hurt badly when she swalloed solid food at that time. Since my mom cou;dn't eat for 2 weeks she got too week and we thought to admit her in hospital for IV fluids. Thank GOD she is able to eat now. raidtaion does help to minimize the pain if bone mets are there. be patience and try to give her more liquids. I know your wife is having tough times,she will feel better. Hope is always alive.
  • Dan620
    Dan620 Member Posts: 220
    #4
    Throat pain
    The burnt esophagus from radiation which started after about 20 treatments out of 35 was very hard on me, meds helped some. I pretty much lived on Wendy shakes at room temp and ate with plastic spoon.Regular water was like acid, spring water was good (no floride) Like Staying Calm says it will get better with time, took mine about 6 weeks after radiation was done. Take it slow and stay away from acid type juices. Best wishes for you and wife. Dan
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #5
    direction and support
    Almost none of us have 'direction or support' when we first enter this new landscape. You are not alone in that regard, as you have already discovered in this joint.

    As both a head/neck cancer and lung cancer survivor, I am surprised your wife's doctors have not recommended Nexium, to begin with. It coats the esophagus and my docs insist that I take it daily, despite initial protestations by insurance co that I could use an over-the-counter alternative. That is ONE suggestion and might be the most effective.

    Another would be for her to have used biafene or aloe or some burn agent immediately after each rad treatment. Whether that was done or not, it is maybe not too late to apply such burn preventives and salves.

    I would also advise that you monitor her nutrition closely, in conjunction with a nutrition guru from wife's hospital. If she has problems eating at the moment, then she should lay off of many things she used to eat regularly. Meats are difficult, spicy is difficult, even salty can be difficult.

    Think about shifting, at least in the short term, to protein shakes, jello stuff, puddings, broths, that sort of thing. It doesn't have to be as boring as that list might sound: banana splits would probably pass muster, mashed potatoes, cream of corn, almost anything that is not sharp, edgy, hot or large. Nutrition is VITAL, as was recently made clear to you.

    Bear in mind that rads don't stop cooking immediately upon cessation. They apparently cook for several more weeks, some say months.

    But the soreness WILL end, and your wife will get back to eating what she is used to eating. Patience and cleverness are required at this point, by both of you.

    Best wishes to your wife, a woman clearly fortunate to have a caring supporter by her side.

    Take care,

    Joe
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #6
    stayingcalm said:

    Radiation burn
    A lot of people swear by the "magic mouthwash" recipe that many doctors prescribe - has she used that? It numbs the throat area, which is supposed to help. I didn't particularly like the numbing feeling so I never used it after the first time, but then, I don't remember having so much pain that eating was a problem. Smooth foods - yogurt, milkshakes, puddings, stuff like that, has she tried eating any of those? Just so you know, the pain from the radiation does go away after a bit, its not a forever thing.

    "Oh, oh, oh, it's magic"
    Hello, beautiful.

    FYI, and you probably already know this, the 'magic mouthwash' that most people get is a concoction that begins with lidocaine, thus the 'numbing' effect. In my experience, you can go to three different hospitals and get three slightly different elixers. I suspect that you can go from one doctor to another within a hospital, in fact, and get different potions.

    Perhaps I am wrong in that regard.

    But, it is true that in most cases its purposes include not just alleviating pain by numbing the mouth/throat (and I agree it is an unpleasant experience), but to reduce or eliminate the chance for a yeast infection in the mouth (trench mouth?).

    It is sometimes worth the nastiness.

    Take care, my sweet friend,

    Joe
  • 58carol
    58carol Member Posts: 17
    #7
    do not wait
    October 2009 went to emergency room hard time breathing. Exray showed a fist sized mass in left lung. They said cancer and a bio one week later confirmed. The hospital that I wanted treated at oncologist was on vacation and they could see me in 12 days. Went in and though the doctor wanted to admit me right away my insurance would not cover a pet scan unless i was an out patient. Sceduled me for the next day. Next day breathing very difficult the fist sized mass was now the size of a basket ball and was wraped around my esophagus. Chemo and radition double doses. The mass was eliminated but my esophagus was burned eating next to impossible I do not know how I made it but I did. I do not nausia now but I have to take very small bites because my throat seems (is) small and food will become stuck. (scarry) I too had a blood transfusion. But even more immportant the doc told me after treatment that I should have radiaton to the brain because that is where the cancer cells will met to first. Two months ago I had a check up and all was well no sign of cancer. I asked about thr radition treatment to the brain and he said that he would meet with the tem and see me intwo months for another checkup and let me know about the radition to the brain. My chech up was last week. I had found a lump on my pelvic area so they did a pet scan and they found cancer in my brain 6 spots the biggest being 1/2 inch. I have an appointment tomarrow for treatment.THE POINT IS DO NOT WAIT SCLC IS A VERY FAST GROWING CANCER. Second opions I agree with but time is very important.

    The only thing I could eat was runny oatmeal and oodles of noodles. it took about two months after treatment to regain my taste buds and for the soreness to go away. It does get better. Dont wait for the radition to the brain. I lost 25 pounds. I weigh 119 now and was hoping to gain more weight. i think the biggest battle is keeping your strenth up. I f gettig fluids is a problem try eating hull less popcorn. That stuff makes you very thirsty even if you do not swallow it and spit it out it makes you wery thirsty. Good Luck to All and myself. GOD bless Joy
  • crick
    crick Member Posts: 8
    #8
    58carol said:

    do not wait
    October 2009 went to emergency room hard time breathing. Exray showed a fist sized mass in left lung. They said cancer and a bio one week later confirmed. The hospital that I wanted treated at oncologist was on vacation and they could see me in 12 days. Went in and though the doctor wanted to admit me right away my insurance would not cover a pet scan unless i was an out patient. Sceduled me for the next day. Next day breathing very difficult the fist sized mass was now the size of a basket ball and was wraped around my esophagus. Chemo and radition double doses. The mass was eliminated but my esophagus was burned eating next to impossible I do not know how I made it but I did. I do not nausia now but I have to take very small bites because my throat seems (is) small and food will become stuck. (scarry) I too had a blood transfusion. But even more immportant the doc told me after treatment that I should have radiaton to the brain because that is where the cancer cells will met to first. Two months ago I had a check up and all was well no sign of cancer. I asked about thr radition treatment to the brain and he said that he would meet with the tem and see me intwo months for another checkup and let me know about the radition to the brain. My chech up was last week. I had found a lump on my pelvic area so they did a pet scan and they found cancer in my brain 6 spots the biggest being 1/2 inch. I have an appointment tomarrow for treatment.THE POINT IS DO NOT WAIT SCLC IS A VERY FAST GROWING CANCER. Second opions I agree with but time is very important.

    The only thing I could eat was runny oatmeal and oodles of noodles. it took about two months after treatment to regain my taste buds and for the soreness to go away. It does get better. Dont wait for the radition to the brain. I lost 25 pounds. I weigh 119 now and was hoping to gain more weight. i think the biggest battle is keeping your strenth up. I f gettig fluids is a problem try eating hull less popcorn. That stuff makes you very thirsty even if you do not swallow it and spit it out it makes you wery thirsty. Good Luck to All and myself. GOD bless Joy

    Radiation Treatment - desperation
    Thank you 58carol,

    This explains why when the SCLC was identified, the doctor started the chemo the next day in the hospital for three days. He then was urgently pushing to start radiation for 30 days twice a day. She had a PET/Scan last Friday and MRI of the brain today. The brain radiation starts within 2 weeks. We went to the 2nd opinion and they mentioned that all the appropriate procedures were taken. We are hoping for the best and wish you the best as well.

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