Radiation side effects

Pearlspapa
Pearlspapa Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
My husband,(Pearlspapa)has had numerous issues from the radiation. We are currrently back in the hospital for the third time since we stopped the treatments.
We started Chemo/rad on November 3rd. Diagnosed on Sept. 21st after surgury to remove a lump on the left side of his neck Sept 18th. They removed his tonsils and did 5 biopsys, but did not find a primary. I still feel his throat had not healed sufficiently when we started the treatments....but what do I know?
We ended up in the hospital Dec. 21st, as he was horribly sick, weakened & dehydrated from throwing up. They sent us home Christmas Eve and held off his final three treatments to Dec 28-30th. He was feeling great Monday morning (12/28) We laid in bed and talked, giggled and snuggled. Life was almost normal. Monday evening he went downhill a bit. Tuesday; a bit more. Weds we walked around and said our good-byes, thank yous and most importantly; God Bless you's to so many kind souls who had helped us. We went home and things went downill from there.
By Thursday, Dec 31st ,we were headed back into the hospital. Mike was there for (12) days. They moved him from a 50 to a 75 Fentanyl patch (which I didn't know)to off-set Mucusistis (sp?), an IV with Saline/potassium and a continuous feed as he couldn't keep the bolus feeds down. Tuesday 1/12, a new Dr with very little background on him, decided he could be sick at home as well as here.
We went home @ 2pm. He slept the rest of day away. Early morning he started vomiting. We struggled thru the day, I tried giving him 2oz of formula with 2oz of water every hour. He
couldn't keep it down and would violently bring it up. I could not keep him hydrated.
By 7 PM Weds eve we were back in the ER. Today is Sat. They removed the patch on Thursday, depending on Ativan for pain and to settle his stomach. His throat pain is worse now, but that is better than the constant nausea. His throat could not start to heal with all the stomach acid and bile constantly forced thru it. They also gave him an enema (not much privacy with the big C), and with the patch gone and that, his stomach seems to be settling. We hope we have finally started down a true path to recovery.
I haven't found a lot of discussion on something like this. Any input?
We hope to go home tomorrow. I think my collie Tully and mutt Pearl will bite me if I smell like him, but don't bring him home soon : )
Thanks to all who have shared their stories. I read them to Mike so he doesn't feel so alone. God Speed in recovery to all.
A special prayer to the people of Haiti. What if we lived there?
Deb

Comments

  • cwcad
    cwcad Member Posts: 117
    #2
    Looking for better times
    Rough road is an understatement. Of that I am sure. My prayers will be with you among the many here on the site. I am sorry that I cannot avail you with anything pertinent for your situation.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #3
    Hi Deb
    Sometimes all we can do is pray and that I am doing for you both. To give you strength & courage to continue to put your Faith in Him, we don’t know the reason why we have these trials but we do know that not a hair of our head will fall to the ground with out him knowing.

    God bless and keep you under his wing.
  • Scambuster
    Scambuster Member Posts: 973
    #4
    Post Treatment Hardship
    Hi Deb,

    Sorry to Mike and you are having a rough time. I was admitted for the last 3-4 weeks of my treatment and also started RT and Erbitux not long after surgery to remove my left tonsil.

    I went home 3-4 days post treatment and lasted about 12 days and was readmitted in bad shape. Vomiting, continued weight loss and what I had not realized, I was in a bad state of depression. I was put back in for about a week and they sent in s psychiatrist and was diagnosed as clinically depressed as well as being sick as a dog.

    I can't give you specific advice on treatments but I would be very firm to get ONE doctor to take of your case and oversee all that is going on. Remaining in hospital is a good idea if he needs continued support, so don't let them toss you out too early if you feel that is the case.

    I gather Mike does NOT have a PEG (Feeding tube) ??? That would certainly make getting some sustenance into him easier. I am unaware how bad his throat is but I needed the PEG for about 4-5 weeks post treatment as I could not really eat enough to get by. I may venture to say not getting a PEG was an error in this case if that is so.

    If he needs feeding via the IV's at this stage would reinforce this argument but the horse has bolted and I am not sure if they would consider using a PEG now to get Mike through this recovery phase.

    If he can recover enough in the next week or two he should be fine. The only concern is that his veins hold up for long enough.
    We all had trouble after treatment so don't feel alone.

    I have posted on numerous occasions that people take 'Glutamine Powder' to help the mucosa heal (Mucositis - esp in the Throat and mouth). See post on this board GLUTAMINE POWDER. I believe this will help Mike. It's a tasteless white powder mixable with anything.

    Lastly keep a close eye on Mike for signs of Depression: Crying, difficultly getting up, listless and generally having a poor outlook, poor sleeping etc. if you suspect he may be depressed, talk to your Doctor about it straight away. Once I was diagnosed, theu re-medicated me and I had a remarkable turn around in condition and recovery.

    I hope some of this information is of some use. Remember he will get through this and look back in amazement but you need to get through this immediate hurdle.

    Wishing you all the best.
    Scambuster.
  • sherobbins
    sherobbins Member Posts: 1
    #5
    Head and Neck Cancer
    I have had head and neck with two recurrences. I had traditional radiation the first time and proton therapy the second. Currently I am on Erbitux. This is the second time I have been on Erbitux, and I have had very good results both times. I was very sick with traditional radiation. Head and neck cancer is the worst for radiation. But through it all, my God has been faithful.
    Before I was diagnosed, I had lost both my parents to cancer in the prior two years. Needless to say, when I heard the “cancer” word, I struggled. I remember standing in church one night, in the middle of worship, thinking “This changes everything.”
    And the Lord said to me very clearly, “Sherry, it changes nothing. Not my commitment to you. Not my plans for you…not my purposes for your life. It changes nothing!”
    I said, “OK, I am going on.” And that, by the grace of God, has been my credo since that date in December 2005. I am a teacher and an Assistant Principal at Christian school. My son is a 10th grader at this school. I attend all his soccer, basketball, and baseball games and have a full life. Two years ago, when I had a recurrence, I really had a death sentence. I had proton therapy and chemotherapy. I never missed a day of school. I would go to treatment early in the morning, teach my classes, and return for my afternoon treatment.
    Through it all, I have had His grace. I have had many miracles and I am believing Him for another one right now. I am not sure how families face Cancer without Jesus.
    My extended family has several cancer miracles and many healing miracles. I know He is faithful. Be encouraged. He is a good God. Even when my mother died of Ovarian Cancer, He was faithful. My brother and I had such a supernatural time with her at the end. She faced her “promotion” with great courage and grace. I miss her, but I have no regrets about her “passing” into eternal life with Jesus.
    We all need a Word from Him to “war a good warfare” with. If you haven’t gotten a word, ask Him, and He will give you one. What are you hearing in your heart? That is all that matters, not the diagnosis, not your symptoms, not your side effects, but what He is saying to you in your inner most being. Hang on to that, and it will get you through this time.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    sherobbins said:

    Head and Neck Cancer
    I have had head and neck with two recurrences. I had traditional radiation the first time and proton therapy the second. Currently I am on Erbitux. This is the second time I have been on Erbitux, and I have had very good results both times. I was very sick with traditional radiation. Head and neck cancer is the worst for radiation. But through it all, my God has been faithful.
    Before I was diagnosed, I had lost both my parents to cancer in the prior two years. Needless to say, when I heard the “cancer” word, I struggled. I remember standing in church one night, in the middle of worship, thinking “This changes everything.”
    And the Lord said to me very clearly, “Sherry, it changes nothing. Not my commitment to you. Not my plans for you…not my purposes for your life. It changes nothing!”
    I said, “OK, I am going on.” And that, by the grace of God, has been my credo since that date in December 2005. I am a teacher and an Assistant Principal at Christian school. My son is a 10th grader at this school. I attend all his soccer, basketball, and baseball games and have a full life. Two years ago, when I had a recurrence, I really had a death sentence. I had proton therapy and chemotherapy. I never missed a day of school. I would go to treatment early in the morning, teach my classes, and return for my afternoon treatment.
    Through it all, I have had His grace. I have had many miracles and I am believing Him for another one right now. I am not sure how families face Cancer without Jesus.
    My extended family has several cancer miracles and many healing miracles. I know He is faithful. Be encouraged. He is a good God. Even when my mother died of Ovarian Cancer, He was faithful. My brother and I had such a supernatural time with her at the end. She faced her “promotion” with great courage and grace. I miss her, but I have no regrets about her “passing” into eternal life with Jesus.
    We all need a Word from Him to “war a good warfare” with. If you haven’t gotten a word, ask Him, and He will give you one. What are you hearing in your heart? That is all that matters, not the diagnosis, not your symptoms, not your side effects, but what He is saying to you in your inner most being. Hang on to that, and it will get you through this time.

    Hi Sherry
    It is so true that the God we server is wonderful God, I like you have had Radiation twice in the head and neck and in 2006 it came back for a third fight, I remember lying in my bed just talking to God in silent one morning and I herd a voice from out of nowhere. I trembled but not with fear and the voice said I Love You, I ask Lord if you love me why am I going through this, he said again Remember that I Love You. I am still here.

    I like many here do my best to tell every one of his love and goodness, Please plan to stay here on CSN, we all need the prayers of Gods servants.

    Where two or three are gathered in my Name there will I be also. God Bless and keep you in his tender care
  • klittle
    klittle Member Posts: 4
    #7
    Deb, I would agree with
    Deb, I would agree with Scambuster that a PEG would be a good idea. I was diagnosed with stage 4 tonsil and throat on 10/28/09, and am nearing the end of my first round of treatments. I had a PEG put in right as I started treatments as a preventative measure. I hate it, it sucks, but it's keeping me alive now. I resisted using it until 12/31, when after not being able to eat for 2 weeks I was finally dehydrated and sick enough that we had to stop my treatments entirely for a week. They prescribed me Replete, by Nestle as the supplement of choice. I drink juice and water to keep the swallowing happening, but primary sustenance has to go via my tube because I can't swallow anything remotely solid anymore. Best of luck to you both.

    Kevin
  • Pearlspapa
    Pearlspapa Member Posts: 4
    #8
    klittle said:

    Deb, I would agree with
    Deb, I would agree with Scambuster that a PEG would be a good idea. I was diagnosed with stage 4 tonsil and throat on 10/28/09, and am nearing the end of my first round of treatments. I had a PEG put in right as I started treatments as a preventative measure. I hate it, it sucks, but it's keeping me alive now. I resisted using it until 12/31, when after not being able to eat for 2 weeks I was finally dehydrated and sick enough that we had to stop my treatments entirely for a week. They prescribed me Replete, by Nestle as the supplement of choice. I drink juice and water to keep the swallowing happening, but primary sustenance has to go via my tube because I can't swallow anything remotely solid anymore. Best of luck to you both.

    Kevin

    thank you
    Thank you all for helpful information, support, faith and guidence!
    Mike does have the PEG tube. We had that sugury right before Thanksgiving. Sorry I didn't mention that, I am so used to it now.
    That was the scary part. He couldn't keep things down even with the tube. In the ER Weds evening, that was the first thing they checked. I found that odd after (12) days in the hospital, someone hadn't thought of it earlier.
    I really think the 75 strength patch is what knocked him in the creek. I don't find it odd that they didn't think or check on that, I find it irresponsible. He does admit the pain in his throat is much worse, but we feel that without all the stomach acids and bile coming thru it, his throat will feel better soon.
    I brought him home today. We are both thrilled to just sit in our small home and smile at each other. The dogs are staying quite close. The best meds for Mike I know.
    We took a small walk & visited the neighbors, but he is still a bit nauseated and we don't want to push it. We are both grateful, even thru the discomfort. I feel the Good Lord gave us a beautiful world to live in and an amazing body to travel it. Sometimes things break down, but he can be your mechanic and help you back on the road. We know he will help us thru the rest.
    I know this won't be my last post. I'm sure there are things ahead that will bring me back to the people who can help us. God Bless you all
    Mike & Deb
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #9
    Pearlspapa said:

    thank you
    Thank you all for helpful information, support, faith and guidence!
    Mike does have the PEG tube. We had that sugury right before Thanksgiving. Sorry I didn't mention that, I am so used to it now.
    That was the scary part. He couldn't keep things down even with the tube. In the ER Weds evening, that was the first thing they checked. I found that odd after (12) days in the hospital, someone hadn't thought of it earlier.
    I really think the 75 strength patch is what knocked him in the creek. I don't find it odd that they didn't think or check on that, I find it irresponsible. He does admit the pain in his throat is much worse, but we feel that without all the stomach acids and bile coming thru it, his throat will feel better soon.
    I brought him home today. We are both thrilled to just sit in our small home and smile at each other. The dogs are staying quite close. The best meds for Mike I know.
    We took a small walk & visited the neighbors, but he is still a bit nauseated and we don't want to push it. We are both grateful, even thru the discomfort. I feel the Good Lord gave us a beautiful world to live in and an amazing body to travel it. Sometimes things break down, but he can be your mechanic and help you back on the road. We know he will help us thru the rest.
    I know this won't be my last post. I'm sure there are things ahead that will bring me back to the people who can help us. God Bless you all
    Mike & Deb

    five?
    It sounds to me like, in your excitement and agitation, you are perhaps processing some of the information you are getting incorrectly.

    To begin with, five biopsies within the timeframe you indicate would certainly be a nightmare for you and your husband, but also for those medical professionals tasked with scheduling and performing them.

    Then there is the notion that fentanyl is used to relieve mucous build-up. I could be wrong, and I am, often, but in my experience (fentanyl patch guy on two different occasions), this patch is prescribed specifically for pain relief.

    If your hub's doctors know of its use as an alleviative for mucous, they should publish it, so that the rest of the head/neck cancer world can get in on the secret. Frankly, in my understanding, I would be amazed if any doctor used such a powerful drug for something like that, as irritating as it might be.

    Finally, your comment, "but what do I know?", is perhaps the most telling remark in your message. Unless you are a doctor or an experienced nurse or a professor of medicine (and even then, who knows when it gets personal?) I would advise that as a newcomer to the disease, you know very little.

    It is not uncommon to look for others to blame in the midst of this, this tragedy. On rare occasion (in my estimation) there is legitimate cause for such blame. Mostly, though, we are casting out against the 'slings and arrows of outrageous fortune', to borrow from the Bard.

    That said, I would question why hub is not on Nexium or some other antacid (if he is not). And I would ask for a nutritionist that can recommend things to eat (if he is not taking everything in via the tube) that will not cause the eruptions (yogurt... they will all recommend yogurt, and with good reason).

    Best wishes to your hub and all of his loved ones.

    Take care,

    Joe

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