An update on Ron

Ron49
Ron49 Member Posts: 91
in Head and Neck Cancer #1
Sorry for not posting as the last few weeks have been a blur. Ron has been in and out of the ER and clinic for hydration and nutrition problems. He has lost 27lbs and is down to 165 this morning. We have a Joey pump and a suction machine. He is only able to do 4 cans of the isosource per day and about 2 bottles of water. Last week we saw Oncologist and she and radiologist decided Ron was too weak for last chemo. I think we are relieved. Last Wednesday he started vomiting at 3am and continued for the next 3 days, he could not even keep medication down and even food with the pump came up. Friday was the last radiation treatment and radiaologist ordered a hydration treatment and blood panel as he felt Ron was very weak. He got ativan, zofran, and 1000ml of fluids and was the first he had relaxed in days. His blood counts are very low and wbc are at 1.6. Nurse says that will recover the further he gets away from treatments. He Finally had a good night sleep Friday. Last night was not as good but we are keeping up the zofran and the ativan and no more vomiting. The mucous is ridiculous and is so thick he chokes on it which wakes him up. He does not feel the suction machine helps so has opted to spit it up. He is no longer swallowing anything as his throat is extremely raw. He is using the miracle mouthwash and says it is helpful. Also using the baking soda, salt, water rinse. He is pretty miserable and weak right now and the ativan is his only relief which makes him sleep. We know this gets better but right now it feels like time is standing still. Rad Dr says it will only be a few weeks and he will start feeling better, his nurse is not as optimistic. I read the posts here and can see it will be sometime. We don't want to anticipate feeling better too soon and just end up being disappointed. We really want to be happy treatment is ending but it is hard to keep your head up when he is so sick. We are absolutely thrilled that Ron won't have to go for the daily dreaded mask and treatment anymore.

Sorry for the long post. I am trying to work some and also be with Ron. I am not sure I am doing either one very well. I guess any improvement will be reason for celebration? I will try and post more frequently.

I will be searching now for posts about the dreaded mucous.

Robyn, Ron's wife
«1

Comments

  • tonyb
    tonyb Member Posts: 69
    #2
    Robyn,
    I don't know if
    Robyn,
    I don't know if this will help or not , but i was taking my nausea meds so that as one would be starting to wear off another was taking effect. by taking them in this staggered fashion,there was always something in my system that was cancelling the nausea.
    oh and getting rid of the mucous is a smart thing, i found that the thick mucous was a big thing in causing nausea for me. Once i started coughing it up the stomach started getting better. Best of luck to you and your husband, tonyb.
  • Ron49
    Ron49 Member Posts: 91
    #3
    tonyb said:

    Robyn,
    I don't know if
    Robyn,
    I don't know if this will help or not , but i was taking my nausea meds so that as one would be starting to wear off another was taking effect. by taking them in this staggered fashion,there was always something in my system that was cancelling the nausea.
    oh and getting rid of the mucous is a smart thing, i found that the thick mucous was a big thing in causing nausea for me. Once i started coughing it up the stomach started getting better. Best of luck to you and your husband, tonyb.

    thank you
    Thanks Tony, Ron is trying to use the suction machine to help with the mucous and the nausea. The zofran seems to be working as long as he keeps taking it consistently and in combo with the ativan he is not vomiting anymore which is great. If there was some relief from the mucous he would actually be doing pretty well but it is just ridiculous. His throat is really raw also and has yet to take any pain meds. I think we will have to try and get something tomorrow for it.

    Thanks again
    Robyn
  • DrMary
    DrMary Member Posts: 531 Member
    #4
    Ron49 said:

    thank you
    Thanks Tony, Ron is trying to use the suction machine to help with the mucous and the nausea. The zofran seems to be working as long as he keeps taking it consistently and in combo with the ativan he is not vomiting anymore which is great. If there was some relief from the mucous he would actually be doing pretty well but it is just ridiculous. His throat is really raw also and has yet to take any pain meds. I think we will have to try and get something tomorrow for it.

    Thanks again
    Robyn

    And don't forget the other end
    With all the dehydration, antinausea drugs and the pain killers in the future, increase your vigilance against constipation. It can make nausea much worse, not to mention being painful to remedy. Colace (do they make a liquid version for the tube?) and lots of Miralax. If it's already too late, talk to the doctor about the next steps - we heard about a guy who had to be hospitalized (it had been 2 weeks!).

    I remember this point as if it were yesterday - you will not believe how well he feels in a week. Hang in there.
  • Goalie
    Goalie Member Posts: 184
    #5
    Ron49 said:

    thank you
    Thanks Tony, Ron is trying to use the suction machine to help with the mucous and the nausea. The zofran seems to be working as long as he keeps taking it consistently and in combo with the ativan he is not vomiting anymore which is great. If there was some relief from the mucous he would actually be doing pretty well but it is just ridiculous. His throat is really raw also and has yet to take any pain meds. I think we will have to try and get something tomorrow for it.

    Thanks again
    Robyn

    You'll get better
    Don't know what else to say but I am one of the many people on here who went through exactly this and it wasn't fun. I was also so sick that the Med Onc decided that doing another chemo was unsafe and medically unadvisable. We were in the last couple weeks of rads and I was bad sick. I had been throwing up for days on end and was so weak that laying down for the daily tanning sessions was easy. Yes, keep up on your meds; it is the only way you are going to get through this. For weeks I had to have a plastic cup with me all the time. Every five minutes I had to spit that incredibly thick mucous into it or I couldn't breathe. Night time was the worst and I had to sleep in only one position exactly on my back or I would drown.

    In the end, with the last treatment, things slowly got better, actually, almost from the very last day without a long lag time. In the first month I gained more than 15 pounds back of the more than 35 lost. The next month I was able to go overseas for work and a couple of weeks ago I played a hockey tournament with five games on the weekend. You may recover just as fast or it may be slower but be confident that you will. And hug your wife since without her you couldn't do this.

    Write in often, Doug
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Hi Robyn
    Thanks for the up-date on Ron, just glad he made it to the finish line, and like you said now starts the healing process and yes it will take some time, but everyday he will get a little better until he reaches his new normal.

    All the best to you both
    Hondo
  • Pam M
    Pam M Member Posts: 2,196
    #7
    Congrats
    Glad the mask is behind you guys. I know it's no consolation to hear that it's common to feel absolutely horrible at this point in treatment, and that it's only a matter of time til he sees the light at the end of the tunnel, and lots of folks have to skip a chemo. Just because it's all true, doesn't mean knowing that will make the pain and worry go away any quicker than it will. I hope he starts to feel improvements soon.
  • Ron49
    Ron49 Member Posts: 91
    #8
    DrMary said:

    And don't forget the other end
    With all the dehydration, antinausea drugs and the pain killers in the future, increase your vigilance against constipation. It can make nausea much worse, not to mention being painful to remedy. Colace (do they make a liquid version for the tube?) and lots of Miralax. If it's already too late, talk to the doctor about the next steps - we heard about a guy who had to be hospitalized (it had been 2 weeks!).

    I remember this point as if it were yesterday - you will not believe how well he feels in a week. Hang in there.

    Hi Mary,
    I will be so glad
    Hi Mary,

    I will be so glad for a day when I no longer ask about things I never thought I would have to ask my husband. I don't want to care how frequently or what color things are in the future but I am acutely aware that it is important right now. Thank you for the heads up with the remedies. I have also learned you can never be too prepared. So far that has not been a problem for Ron however it seems like anything is possible until the effects of the treatment really stop.

    I am sorry to bring back bad memories for you but so happy to hear you say there will be improvement in a week. That single sentence has made my entire day :-). I sometimes am not sure about posting as I don't want to be negative. I promise when there is something to celebrate I will send out the message so you can remember how that felt and celebrate with us.
    Robyn
  • Ron49
    Ron49 Member Posts: 91
    #9
    Goalie said:

    You'll get better
    Don't know what else to say but I am one of the many people on here who went through exactly this and it wasn't fun. I was also so sick that the Med Onc decided that doing another chemo was unsafe and medically unadvisable. We were in the last couple weeks of rads and I was bad sick. I had been throwing up for days on end and was so weak that laying down for the daily tanning sessions was easy. Yes, keep up on your meds; it is the only way you are going to get through this. For weeks I had to have a plastic cup with me all the time. Every five minutes I had to spit that incredibly thick mucous into it or I couldn't breathe. Night time was the worst and I had to sleep in only one position exactly on my back or I would drown.

    In the end, with the last treatment, things slowly got better, actually, almost from the very last day without a long lag time. In the first month I gained more than 15 pounds back of the more than 35 lost. The next month I was able to go overseas for work and a couple of weeks ago I played a hockey tournament with five games on the weekend. You may recover just as fast or it may be slower but be confident that you will. And hug your wife since without her you couldn't do this.

    Write in often, Doug

    Hi Doug,
    It sounds like you
    Hi Doug,

    It sounds like you went through the exact same thing. Ron has been using a Starbucks cup to spit into and keeps the cuff on the bottom so no one can see it. When I rinse the cup for him I am amazed how thick this stuff is. Ron is sleeping sitting up and like you said he is afraid of choking. Also why he was reluctant for pain meds. The ativan is helping but he may need something stronger.

    Like with Mary your words are music to my ears today. Thank you for sharing and I am so happy to hear you were able to play a tournament. I know that is a very physical accomplishment and very encouraging.

    Take care and thanks for sharing
    Robyn
  • Ron49
    Ron49 Member Posts: 91
    #10
    Hondo said:

    Hi Robyn
    Thanks for the up-date on Ron, just glad he made it to the finish line, and like you said now starts the healing process and yes it will take some time, but everyday he will get a little better until he reaches his new normal.

    All the best to you both
    Hondo

    Hi Hondo,
    Thank you for the
    Hi Hondo,

    Thank you for the encouraging words. We also are so glad to be done. Tomorrow he starts the new normal, you are so right about that. I meant to ask do you think his voice will recover fully? He can't speak at all right now, only barely a whisper.

    Thanks again
    Robyn
  • Ron49
    Ron49 Member Posts: 91
    #11
    Pam M said:

    Congrats
    Glad the mask is behind you guys. I know it's no consolation to hear that it's common to feel absolutely horrible at this point in treatment, and that it's only a matter of time til he sees the light at the end of the tunnel, and lots of folks have to skip a chemo. Just because it's all true, doesn't mean knowing that will make the pain and worry go away any quicker than it will. I hope he starts to feel improvements soon.

    Thank you Pam! I think if he
    Thank you Pam! I think if he had the last chemo he would have had to be hospitalized. He has told me a few times while he was so sick he felt like it was killing him. So glad he can recover now.

    Thanks again
    Robyn
  • connieprice1
    connieprice1 Member Posts: 300 Member
    #12
    Getting closer to the finish line!!
    Robyn, Connie's going thru all the mucous stuff right now too. She also has a lot of nausea but seems to be getting better day by day. Tell Ron to hang in there, soon this will just be a bad memory. GET WELL SOON, Homer & Connie
  • Pumakitty
    Pumakitty Member Posts: 652
    #13
    Hi Robin
    I am sorry that you and Ron have had such a rough time. It will get better. My dad had a pretty easy time, but the last couple of weeks was rough for him. But then one day he told us the he was feeling better then he had for a couple of years. That made it all worth the struggle. Hang in there and things will get better. Ron is a very lucky guy to have such a great wife.

    Kathy
  • wifeforlife
    wifeforlife Member Posts: 189
    #14
    Pumakitty said:

    Hi Robin
    I am sorry that you and Ron have had such a rough time. It will get better. My dad had a pretty easy time, but the last couple of weeks was rough for him. But then one day he told us the he was feeling better then he had for a couple of years. That made it all worth the struggle. Hang in there and things will get better. Ron is a very lucky guy to have such a great wife.

    Kathy

    Hi Robin,
    Oh we all know sooo well. I think my husbands worst week was the third week after rads stopped. there is a pain patch they can give him which will help alot and no need to put it in tube!... Once he is not nauseated ... get more water down him.. that liguid food makes the mucus really thick!.. water will help when he can tollerate it.
    Let there be some comfort in that fact that what you are dealing with isn't unusual. We too wondered if they were going to kill him with the treatments. One year NED and living happy!!.
    Wife
  • Ron49
    Ron49 Member Posts: 91
    #15
    wifeforlife said:

    Hi Robin,
    Oh we all know sooo well. I think my husbands worst week was the third week after rads stopped. there is a pain patch they can give him which will help alot and no need to put it in tube!... Once he is not nauseated ... get more water down him.. that liguid food makes the mucus really thick!.. water will help when he can tollerate it.
    Let there be some comfort in that fact that what you are dealing with isn't unusual. We too wondered if they were going to kill him with the treatments. One year NED and living happy!!.
    Wife

    Thank you, as I mentioned
    Thank you, as I mentioned before it is so inspiring to hear life will return to somewhat normal and this awful will be behind us at some point. I am going to work on pain meds tomorrow so I will find out about the patch. Kinda hate the tube so anyway to avoid it is a blessing.
    Robyn
  • buzz99
    buzz99 Member Posts: 404
    #16
    Update on Ron
    I was thinking of you two the other day! Glad you posted but so sorry you and Ron are so miserable. I think the thick mucous was Buzz's most troubling symptom during radiation. It does diminish greatly over time. I am surprised Ron is not getting any pain meds! He should not be toughing it out. The week at the end of rads and the week after were the most difficult for Buzz. Each week Ron will be getting better and better. Take care and let us know how you are doing. Hopefully we on the forum can help you through this ordeal! Karen
  • Dav1965
    Dav1965 Member Posts: 132
    #17
    Ron
    I was in the same boat as you. I would throw up all of my food from my little joey and that was the worst thing for me. The pain was not too bad but i just can not stand naseau. They would give me 2 bags of fluid every other day just to keep me from dehydrating. At the end the only gave me 75% of my cysplatin. They cut me a break. Like someone told you earlier the thing that helped most was staggering the naseau medicine. That helped more than anything. Always try to keep some naseau medicine in him. I took naseau medicine even though i did not need it. I think it helped to do this. I took 2 times the amout of naseau medicine than i did pain medicine. Good luck and God bless. This does pass. Let him sleep as much as possible. As long as he is sleeping he is not sick. David
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #18
    Dav1965 said:

    Ron
    I was in the same boat as you. I would throw up all of my food from my little joey and that was the worst thing for me. The pain was not too bad but i just can not stand naseau. They would give me 2 bags of fluid every other day just to keep me from dehydrating. At the end the only gave me 75% of my cysplatin. They cut me a break. Like someone told you earlier the thing that helped most was staggering the naseau medicine. That helped more than anything. Always try to keep some naseau medicine in him. I took naseau medicine even though i did not need it. I think it helped to do this. I took 2 times the amout of naseau medicine than i did pain medicine. Good luck and God bless. This does pass. Let him sleep as much as possible. As long as he is sleeping he is not sick. David

    Hoping Ron will feel better soon.
    I also got very bad a couple weeks after rads. Very bad. Lost about 40 lbs then because I could not stop throwing up. It was just awful. The pump did help me get nutrition back into me and keep it there. Hope he feels a little better every day and is on his way up and out of the worst.
  • susan0803
    susan0803 Member Posts: 90
    #19
    sweetblood22 said:

    Hoping Ron will feel better soon.
    I also got very bad a couple weeks after rads. Very bad. Lost about 40 lbs then because I could not stop throwing up. It was just awful. The pump did help me get nutrition back into me and keep it there. Hope he feels a little better every day and is on his way up and out of the worst.

    feel better soon
    Hi Robyn,
    I do hope that Ron feels better soon. I am caregiver to my husband and I think I felt the same as you, not sure we are doing the right thing or not. But my husband made it through and is over the horrible mucous and stuff. I agree with keeping up with the constipation though. I think that was one of the worst parts for Joe since that just made everything worse. He managed the pain with fentanyl patches.

    Suzanne
  • Ron49
    Ron49 Member Posts: 91
    #20
    susan0803 said:

    feel better soon
    Hi Robyn,
    I do hope that Ron feels better soon. I am caregiver to my husband and I think I felt the same as you, not sure we are doing the right thing or not. But my husband made it through and is over the horrible mucous and stuff. I agree with keeping up with the constipation though. I think that was one of the worst parts for Joe since that just made everything worse. He managed the pain with fentanyl patches.

    Suzanne

    You guys are so great
    Ron is now taking the vicodin for pain and I was able to buy an over the counter stool softner that dissolves in water and it is working great so far. His medicine regimen now is zofran 3x per day, omneprazole 2x per day, lortab (vicodine) 3x per day, ativan 3x per day, and the constipation med 1x per day. He is using the miracle mouthwash swish all day and some at night, also a mouthwash called ulcer-ease for sores on his tongue. He is also using a cream for his neck called Calendula cream. It is all natural and not greasy. The burns are pretty bad right now. Ron said after starting the vicodin that this was the best combo of meds he has had yet and he finally feels some relief. I would not have known about most of this stuff unless I had info and advice from all of you. Again I can't thank you all enough. I am glad to be able to offer or at least share some of our experiences with others that are going through similiar experiences. It hurts my heart to think of anyone else going through this. It is very difficult but as others have said to us repeatedly here, it is doable. Can't wait to be way down the healing road and see Ron smile again.

    Robyn
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #21
    Ron49 said:

    You guys are so great
    Ron is now taking the vicodin for pain and I was able to buy an over the counter stool softner that dissolves in water and it is working great so far. His medicine regimen now is zofran 3x per day, omneprazole 2x per day, lortab (vicodine) 3x per day, ativan 3x per day, and the constipation med 1x per day. He is using the miracle mouthwash swish all day and some at night, also a mouthwash called ulcer-ease for sores on his tongue. He is also using a cream for his neck called Calendula cream. It is all natural and not greasy. The burns are pretty bad right now. Ron said after starting the vicodin that this was the best combo of meds he has had yet and he finally feels some relief. I would not have known about most of this stuff unless I had info and advice from all of you. Again I can't thank you all enough. I am glad to be able to offer or at least share some of our experiences with others that are going through similiar experiences. It hurts my heart to think of anyone else going through this. It is very difficult but as others have said to us repeatedly here, it is doable. Can't wait to be way down the healing road and see Ron smile again.

    Robyn

    Robyn
    The days of Ron smiling again are just around the corner. Great to hear of the progress, and that it's becoming more tolerable for him with the med combo. It does make a Positive difference, and I Pray the worst is over, now.

    kcass

Discussion Boards