skipping radiation

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skipping radiation

by karenhasch on Sat Feb 04, 2012 03:02 AM

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I just have so many questions and this is just one more.  My brother has throat cancer and has 7 treatments left.  He was hospitalized for 12 days for thrush and low white blood count due to the chemo.  He's home and back on the radiation.  Has anyone skipped radiation for that long and did they have to have extra treatments because of it.  The nurse today told him that he'll probably have to do more than the seven he has left because of the 12 day break.  His tongue is just on fire and it's hard to get any food past his tongue.  Has anyone skipped radiation and were they required to have more than the 35 treatments because of it?  Any suggestions for tongue burning besides the mouth rinse?  Thanks alot!

Karen

RE: skipping radiation

by Randall55 on Sat Feb 04, 2012 05:26 PM

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Hi KAren ... I was hospitalized twice during my treatments for much the same reason as your brother. Couldn't swallow for the pain etc. Although I did continue with the treatments. I did have 35 treatments in total and I am not sure why but I am told that 35 treatments is the number. My problemn was that they couldn't give me the chemo at the same time so they assisted in getting my Thrush under cintrol first and then calculated the days missed from the chemo and then slightly lessend the dosage of chemo. It did all work out fine at the end. But I can tell you that dealing with the Thrush was probably the most painful and difficiult event of my life and definitely of this treatment. I was just at the point of giving in to the insertion of a feeding tube when I had a "breakthrough" and could start to swallow again. Not really great but I could get some things down. When I met in the morning with the oncologist who was to administer the feeding tube he told me that of ALL the cancers, the treatment for Throat cancer was the most barbaric. It is simply because the mouth and especially the throat is your gateway o your entire body. When you are dealing with that it effects your body in every way imaginable. I have never forgotten that and it put a whole new perspective on dealing with this for me.  I can't imagine that they would increase the number of radiation treatments but I am pretty confidant that they would want to complete all 35 treatments for sure. The tongue burning is all part of this and you have to get your brother to remain diligent with the rinses. Keep on it all the time. NO breaks, no forgetting and no "its too painful to do" times. I know this sounds harsh but it is the only way to combat it. It is excrutiating some days and frustrating other days but you must have your brother remain diligent and push forward.  I have my wife and the nurses to thank for this! When I was hospitalized, they (nurses) were on me 24/7 and when I got home my wife was of the same nature. There were some rough times but I am so thankful that they kept pushing me. Sometimes I would take small (VERY SMALL) bits of ice cream or sorbet and let it settle and melt in my mouth. Shaved ice also helped at certain points. This wasn't a cure and each and every day the pain would change until it finally subsided. LIke I said, I finally opted for the feeding tube as I couldn't take the pain anymore andthen I had this breakthrough. If your brother is at this point the feeding tube might be his only option and he really has to consider it. If I've learned anything it is to keep up your nutrition no matter what. I will contimue to pray for his recovery and his pain to subside. GodBless. 

RE: skipping radiation

by Roselvr on Sat Feb 04, 2012 09:27 PM

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Karen; my hub had 33 rads; at one time they did stop due to his skin & pain & when they continued; they kept the count to equal 33. His tongue is going to feel like it's burning. For the pain we found Actiq pops were the best because it actually felt like it coated the pain areas including the tongue & throat. My hub was also given the pain patches but they did not help the pain like the pops did. For thrush; Fleuconizole- my hub had to take the bigger pills for at least 7 days; the smaller pills did not work. My hub did not like magic mouthwash; he said the baking soda rinses felt the best. I'm not sure if he salted the water or not

RE: skipping radiation

by karenhasch on Sat Feb 04, 2012 11:01 PM

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On Feb 04, 2012 5:26 PM Randall55 wrote:

Hi KAren ... I was hospitalized twice during my treatments for much the same reason as your brother. Couldn't swallow for the pain etc. Although I did continue with the treatments. I did have 35 treatments in total and I am not sure why but I am told that 35 treatments is the number. My problemn was that they couldn't give me the chemo at the same time so they assisted in getting my Thrush under cintrol first and then calculated the days missed from the chemo and then slightly lessend the dosage of chemo. It did all work out fine at the end. But I can tell you that dealing with the Thrush was probably the most painful and difficiult event of my life and definitely of this treatment. I was just at the point of giving in to the insertion of a feeding tube when I had a "breakthrough" and could start to swallow again. Not really great but I could get some things down. When I met in the morning with the oncologist who was to administer the feeding tube he told me that of ALL the cancers, the treatment for Throat cancer was the most barbaric. It is simply because the mouth and especially the throat is your gateway o your entire body. When you are dealing with that it effects your body in every way imaginable. I have never forgotten that and it put a whole new perspective on dealing with this for me.  I can't imagine that they would increase the number of radiation treatments but I am pretty confidant that they would want to complete all 35 treatments for sure. The tongue burning is all part of this and you have to get your brother to remain diligent with the rinses. Keep on it all the time. NO breaks, no forgetting and no "its too painful to do" times. I know this sounds harsh but it is the only way to combat it. It is excrutiating some days and frustrating other days but you must have your brother remain diligent and push forward.  I have my wife and the nurses to thank for this! When I was hospitalized, they (nurses) were on me 24/7 and when I got home my wife was of the same nature. There were some rough times but I am so thankful that they kept pushing me. Sometimes I would take small (VERY SMALL) bits of ice cream or sorbet and let it settle and melt in my mouth. Shaved ice also helped at certain points. This wasn't a cure and each and every day the pain would change until it finally subsided. LIke I said, I finally opted for the feeding tube as I couldn't take the pain anymore andthen I had this breakthrough. If your brother is at this point the feeding tube might be his only option and he really has to consider it. If I've learned anything it is to keep up your nutrition no matter what. I will contimue to pray for his recovery and his pain to subside. GodBless. 

Thank you so much for the info, that's just what I needed to hear!

RE: skipping radiation

by karenhasch on Sat Feb 04, 2012 11:04 PM

Quote | Reply

On Feb 04, 2012 9:27 PM Roselvr wrote:

Karen; my hub had 33 rads; at one time they did stop due to his skin & pain & when they continued; they kept the count to equal 33. His tongue is going to feel like it's burning. For the pain we found Actiq pops were the best because it actually felt like it coated the pain areas including the tongue & throat. My hub was also given the pain patches but they did not help the pain like the pops did. For thrush; Fleuconizole- my hub had to take the bigger pills for at least 7 days; the smaller pills did not work. My hub did not like magic mouthwash; he said the baking soda rinses felt the best. I'm not sure if he salted the water or not

Thanks for the info.  What are Actiq pops and where do you get them?  I know he had the patch but stopped using it cuz it was making him crazy.  He's doing the magic mouthwash now, I'll mention the baking soda.

RE: skipping radiation

by DWayneG on Sun Feb 05, 2012 07:08 AM

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I just finished radiation treatment myself. The rinses I like the best is diet gingerale, let it go flat first. Hope it helps.

RE: skipping radiation

by Roselvr on Sun Feb 05, 2012 02:27 PM

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Actiq by Cephalon, is a solid formulation of fentanyl citrate on a plastic stick

The Actiq is a prescription. You may have to call around to see if your pharmacy will order it for you. Brett Hudson from the 70's group Hudson Brothers blogged about it & said it was the only thing that worked for his pain. I tried to get a script when we 1st started but the doctors don't like to give it for some reason. He also used 2 tablespoons of milk of magnesia (MOM) with equal parts of water; swished in his mouth. A friend of ours also is using the MOM & said it works great. My hub used it a few times but did not stick with it.

My hub got sick with the patches after a few hours. For some reason; he was still able to use the pops. If you do get the pops; he should try a little at a time until he has pain relief. My hub did not need the whole pop; one pop would last him all day.

RE: skipping radiation

by brenda40 on Sat Feb 11, 2012 06:52 AM

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On Feb 04, 2012 3:02 AM karenhasch wrote:

I just have so many questions and this is just one more.  My brother has throat cancer and has 7 treatments left.  He was hospitalized for 12 days for thrush and low white blood count due to the chemo.  He's home and back on the radiation.  Has anyone skipped radiation for that long and did they have to have extra treatments because of it.  The nurse today told him that he'll probably have to do more than the seven he has left because of the 12 day break.  His tongue is just on fire and it's hard to get any food past his tongue.  Has anyone skipped radiation and were they required to have more than the 35 treatments because of it?  Any suggestions for tongue burning besides the mouth rinse?  Thanks alot!

Karen

Hi Karen, So sorry for what you & your brother are going through. Be very careful not to skip treatments.  We took several breaks (3) due to all the same reasons.  When the cancer returned a few months after the 35 treatments we went to MD Anderson.  They agreed with all the treatment we had other than missing radiation.  I asked how they would have handled it & they told us that my husband would have been hospitalized and sedated if need be but that the radiation would have continued.  They say that for every day you skip that you increase the risk of reoccurence. 

Hang in there, Brenda

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