Looking for some advice
Comments
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RobynRon49 said:Thank you Kim, he just got
Thank you Kim, he just got sick again and he only tried to take in 4 ozs. I think you are right about it going in slow, that might help. His stomach does not want anything at this point so we may have to go super slow and maybe 1 oz at a time. He has had almost nothing for 2 days except what he got at ER. So incredibly scared. I feel so helpless, I am beyond tears at this point. Thank you so much for the thoughts. Hoping sunnier days are ahead sooner rather than later.
Robyn
Best to get this corrected`tomorrow AM, if it's been two days. The IV drips will help. If he has a Port, maybe he could do that at home? Maybe they can do a test to pinpoint any specific problem in his stomach, if there is one. Gotta get the Nutritien into him, Robyn. Might need to demand to see a Dr., rather than a Nurse. I had to slam my fist down on a counter top on the first day of week #2 to let them know I was gonna see the rad Dr., or else, and that brought her into the room within 2 minutes. Do what you think you have to, and is probably legal, to get it done. They are the Drs. in charge of Ron's care, and it looks to this family like they're not doing their job.
Keep us updated ASAP.
kcass0 -
RobynKent Cass said:Robyn
Best to get this corrected`tomorrow AM, if it's been two days. The IV drips will help. If he has a Port, maybe he could do that at home? Maybe they can do a test to pinpoint any specific problem in his stomach, if there is one. Gotta get the Nutritien into him, Robyn. Might need to demand to see a Dr., rather than a Nurse. I had to slam my fist down on a counter top on the first day of week #2 to let them know I was gonna see the rad Dr., or else, and that brought her into the room within 2 minutes. Do what you think you have to, and is probably legal, to get it done. They are the Drs. in charge of Ron's care, and it looks to this family like they're not doing their job.
Keep us updated ASAP.
kcass
Sometimes even when you get in tons of fluids and nutrition you can still get dehydrated and have deficiencies anyway. I had to have fluids for the last three weeks. Your body is just so taxed and stressed.
Putting the food in very slowly can really make a difference. Plus I had to feed myself and do everything on my own. For a while there I was so sick and weak I could barely move. I should have gotten a pump earlier. I was so sick, I could not stop vomiting every time I put anything in my peg tube. I don't think they reacted quick enough even tho I was complaining to RO and nutrition team, finally, my really nice gastro doc suggested the pump and it worked. My nutritionist gave me a couple of gravity bags and they were ok, but the pump was better. I had to start very slow and only go with putting in one can over three hours. With the pump it was very easy. Pour all my cans in, set it and go to sleep. Alarm on the pump would go off and wake me up in the morning. I'd flush with fluids and disconnect.
With the pump I went from 87 to 97 pounds in a few months.0 -
How about using OrajelRon49 said:Thank you Kim, he just got
Thank you Kim, he just got sick again and he only tried to take in 4 ozs. I think you are right about it going in slow, that might help. His stomach does not want anything at this point so we may have to go super slow and maybe 1 oz at a time. He has had almost nothing for 2 days except what he got at ER. So incredibly scared. I feel so helpless, I am beyond tears at this point. Thank you so much for the thoughts. Hoping sunnier days are ahead sooner rather than later.
Robyn
Dear Robyn,
I understand completely what you've been thru and how horrible it is. During my treatment,, I visited ER more than 5 times due to hydration,, talk to Dr and have them give Ron IV drip everyday,, or have them give him nutritient food thru his port.
I have tried so many things and I found out that if you apply orajel (mix with water) enough to rinse your mouth so it felt numb,, and drink up whatever nutritient drinks (in my case,, Ensure works best for me,,) it helps me alot,, I know everything tasted like sandbox when you have radiation combined cisplatin,,
however,, it will get better,, tell ROn to hang in there and keep taking the medication for feeling nauseated consistent,, it won't work if he keeps changing it or not taking it constantly,, (give it try for at least 3 days).
My prayers goes with you and Ron0 -
Kent, sweet, and oops,oopsydoopsy said:How about using Orajel
Dear Robyn,
I understand completely what you've been thru and how horrible it is. During my treatment,, I visited ER more than 5 times due to hydration,, talk to Dr and have them give Ron IV drip everyday,, or have them give him nutritient food thru his port.
I have tried so many things and I found out that if you apply orajel (mix with water) enough to rinse your mouth so it felt numb,, and drink up whatever nutritient drinks (in my case,, Ensure works best for me,,) it helps me alot,, I know everything tasted like sandbox when you have radiation combined cisplatin,,
however,, it will get better,, tell ROn to hang in there and keep taking the medication for feeling nauseated consistent,, it won't work if he keeps changing it or not taking it constantly,, (give it try for at least 3 days).
My prayers goes with you and Ron
I put
Kent, sweet, and oops,
I put in messages and calls to everyone I can think of asking for something to help I think the pump and suction might help hopefully something will come of it this morning. Thanks for the suggestions they are so helpful and we would be lost without them
Robyn0 -
NAUSEA
Robyn, my Doc prescribed a medication called Reglan. It was a liquid that I put into my feeding tube bag, or direct injected from a syringe. I did this 3 times a day and it helped to pass all of the liquid nutrition through my system. Also make sure Ron is not taking too much feeding at one time. I had a horrible time with vomiting after feeding, and discovered I was using too much at one time.
Other than that, try to keep up with the anti nausea meds as best as you can. With regard's to the worst days are ahead, Ron may develop some burns on his skin where he is receiving radiation, and the same may go for the inside of the mouth.
Mike0 -
Ron and RobynRon49 said:Kent, sweet, and oops,
I put
Kent, sweet, and oops,
I put in messages and calls to everyone I can think of asking for something to help I think the pump and suction might help hopefully something will come of it this morning. Thanks for the suggestions they are so helpful and we would be lost without them
Robyn
My heart goes out to you!!! We've been down this road. Buzz was on the pump 24/7 initially. So you may have to go that route. The antinausea drugs can really help but you have to stay ahead of the nausea. Buzz received the Emend for three days each chemo cycle. I also gave him the Zofran preventatively. Once the nausea/vomiting starts, it is difficult to control. You can also alternate the Compazine and Zofran so he gets one or the other every three hours. Our oncologist told us not to use suppositories while receiving chemo. Maybe a risk of bleeding? Our oncologist also recommended omitting the last round of chemo so Buzz received two rounds instead of three. He was just too sick with each round and had to be hospitalized for a week each time. You might also ask for a home care nurse who can show you how to use machines and give you much needed support. Keep being the "squeaky wheel" so that you get the help you need. And we are all here for you! Karen0 -
So sorry to hear..luv4lacrosse said:NAUSEA
Robyn, my Doc prescribed a medication called Reglan. It was a liquid that I put into my feeding tube bag, or direct injected from a syringe. I did this 3 times a day and it helped to pass all of the liquid nutrition through my system. Also make sure Ron is not taking too much feeding at one time. I had a horrible time with vomiting after feeding, and discovered I was using too much at one time.
Other than that, try to keep up with the anti nausea meds as best as you can. With regard's to the worst days are ahead, Ron may develop some burns on his skin where he is receiving radiation, and the same may go for the inside of the mouth.
Mike
My heart aches for your poor husband, the mucous is brutal during this time and it's just all as you said hellish. Thinking of you and your husband. *CYBER HUG*
-Kristyn0 -
Hydration heals
To Ron and Robyn,
Sorry to hear about your hard time dealing with your treatment. I also had a horrible time with mucus.I often wished I could have a portable sink in my purse.I lost sixty pounds even though I had a Peg tube before treatment started.The jevity was to thick and my body rejected it depite repeated tries so they had me try Boost Breeze with protein powder mixed in it.I could keep this down much better.My oncologist also canceled my third round of Cisplatin because my body couldn't take it.My doctor also prescribed clotrimazole tablets to suck on to help with mucus.Most important to my feeling half human was hydration therapy.I was given IV fluids three times a week at the Cancer Center besides my family,faith and will to live hydration therapy was paramount to my body surviving the treatment.I finished my treatment September 2009 and am doing very well.I wish I could some how travel back in time and tell myself the mucus will resolve because at that time I felt like I would almost lose myself in it.So I will tell you, just know as hard as it is it will get better.Good luck with it all.
Laura0 -
Karen, Mike, Krystin, andLarla said:Hydration heals
To Ron and Robyn,
Sorry to hear about your hard time dealing with your treatment. I also had a horrible time with mucus.I often wished I could have a portable sink in my purse.I lost sixty pounds even though I had a Peg tube before treatment started.The jevity was to thick and my body rejected it depite repeated tries so they had me try Boost Breeze with protein powder mixed in it.I could keep this down much better.My oncologist also canceled my third round of Cisplatin because my body couldn't take it.My doctor also prescribed clotrimazole tablets to suck on to help with mucus.Most important to my feeling half human was hydration therapy.I was given IV fluids three times a week at the Cancer Center besides my family,faith and will to live hydration therapy was paramount to my body surviving the treatment.I finished my treatment September 2009 and am doing very well.I wish I could some how travel back in time and tell myself the mucus will resolve because at that time I felt like I would almost lose myself in it.So I will tell you, just know as hard as it is it will get better.Good luck with it all.
Laura
Karen, Mike, Krystin, and Laura,
Thank you for the info. All so incredibly helpful. Went to radiation today and Ron has lost 9 lbs since Friday afternoon and is down to 171 or 25 lbs down total. Doc was shocked (so was I) and called onco nurse to have order placed immediately for pump. Also prescribed some pain meds and made sure there is a standing order for hydration. Got a call from onco nurse this afternoon and the suction machine and pump should come tomorrow. I am so relieved. Ron took in only about 16 oz today and all the anti nausea meds. He really is so much better than yesterday. He can't talk as his throat is so raw and filled with phlem and he is having a hard time hearing. But at least he is more stable than yesterday and I feel like the pump and suction will help tremendously. I can't thank you all enough as I would not have known to even ask and the Drs don't offer this stuff up front.
Robyn & Ron0 -
Hi Robyn & RonRon49 said:Karen, Mike, Krystin, and
Karen, Mike, Krystin, and Laura,
Thank you for the info. All so incredibly helpful. Went to radiation today and Ron has lost 9 lbs since Friday afternoon and is down to 171 or 25 lbs down total. Doc was shocked (so was I) and called onco nurse to have order placed immediately for pump. Also prescribed some pain meds and made sure there is a standing order for hydration. Got a call from onco nurse this afternoon and the suction machine and pump should come tomorrow. I am so relieved. Ron took in only about 16 oz today and all the anti nausea meds. He really is so much better than yesterday. He can't talk as his throat is so raw and filled with phlem and he is having a hard time hearing. But at least he is more stable than yesterday and I feel like the pump and suction will help tremendously. I can't thank you all enough as I would not have known to even ask and the Drs don't offer this stuff up front.
Robyn & Ron
Glad you finally got the doc's attention! It seems they don't believe us when we call and think we are just "making a mountain out of a mole hill." So glad to hear Ron is a bit better. Hydration can really help people feel better. I am a former RN but on the two occasions I had to call doctors after hours, they blew me off. The next day Buzz had to be admitted to the hospital! So, keep calling them with your concerns. Chemo/radiation is really tough but there are ways to make it more tolerable. I look forward to hearing from you so I can pass along the wisdom I received from the survivors when we were going through treatment. Karen0 -
Robyn & RonRon49 said:Karen, Mike, Krystin, and
Karen, Mike, Krystin, and Laura,
Thank you for the info. All so incredibly helpful. Went to radiation today and Ron has lost 9 lbs since Friday afternoon and is down to 171 or 25 lbs down total. Doc was shocked (so was I) and called onco nurse to have order placed immediately for pump. Also prescribed some pain meds and made sure there is a standing order for hydration. Got a call from onco nurse this afternoon and the suction machine and pump should come tomorrow. I am so relieved. Ron took in only about 16 oz today and all the anti nausea meds. He really is so much better than yesterday. He can't talk as his throat is so raw and filled with phlem and he is having a hard time hearing. But at least he is more stable than yesterday and I feel like the pump and suction will help tremendously. I can't thank you all enough as I would not have known to even ask and the Drs don't offer this stuff up front.
Robyn & Ron
I know it's been said a million times above but hang in there. They told me I was supposed to put in 6 cans of Jevity a day and when I tried to put more than one in I was puking it back up. The hospital tells you that your supposed to put in 6 cans a day but if you have lost a lot of weight already, I got my PEG at about week 5 and lost about 30 lbs, your stomach isn't much bigger than an orange. I was lucky to get in one can at the beginning and used water through it as well. I got really dehydrated from not eating and drinking and thats why I went into the hospital to get the tube as well as IV for hydration.
As far as the mucous, Magic Mouthwash was the way to go and they gave me this thick very vile liquid to numb the throat. The Mouthwash was the trick to help with the sores in the mouth, the mucous and the raw throat. As much as it hurt I would force myself to spit out the mucous when I could and it seemed to go away a little.
I finished my treatments in September 2010 so if you guys want any more input feel free to ask away.0 -
Ron and Robyn?Webhead68 said:Robyn & Ron
I know it's been said a million times above but hang in there. They told me I was supposed to put in 6 cans of Jevity a day and when I tried to put more than one in I was puking it back up. The hospital tells you that your supposed to put in 6 cans a day but if you have lost a lot of weight already, I got my PEG at about week 5 and lost about 30 lbs, your stomach isn't much bigger than an orange. I was lucky to get in one can at the beginning and used water through it as well. I got really dehydrated from not eating and drinking and thats why I went into the hospital to get the tube as well as IV for hydration.
As far as the mucous, Magic Mouthwash was the way to go and they gave me this thick very vile liquid to numb the throat. The Mouthwash was the trick to help with the sores in the mouth, the mucous and the raw throat. As much as it hurt I would force myself to spit out the mucous when I could and it seemed to go away a little.
I finished my treatments in September 2010 so if you guys want any more input feel free to ask away.
How did today, Tuesday, go? Bunch of us are wondering, you know.
Was wondering when Ron got his PEG- before, or during treatment? Had mine for close to two weeks before treatment began, and really didn't need to use it for most of the first week, so my system had gotten used-to it a little. I am wondering if that might make a difference. I, too, would have been advised to use 6 cans of Jevity, if I used the 1.6 formula, but I used the 2.0- that is why only 4 cans for me. And though I was down to only 2 cans/day in the roughest times, that was more instinctual as to the why- I felt "full" enough without any more. Never did vomit-up the Jevity. Maybe it's just me and my C specifics, but I do wonder if there's an advantage to getting the PEG before treatment even begins.
Hope and Pray it was a better day, Ron. It do get rough, but you'll be okay.
kcass0 -
Tuesday UpdateKent Cass said:Ron and Robyn?
How did today, Tuesday, go? Bunch of us are wondering, you know.
Was wondering when Ron got his PEG- before, or during treatment? Had mine for close to two weeks before treatment began, and really didn't need to use it for most of the first week, so my system had gotten used-to it a little. I am wondering if that might make a difference. I, too, would have been advised to use 6 cans of Jevity, if I used the 1.6 formula, but I used the 2.0- that is why only 4 cans for me. And though I was down to only 2 cans/day in the roughest times, that was more instinctual as to the why- I felt "full" enough without any more. Never did vomit-up the Jevity. Maybe it's just me and my C specifics, but I do wonder if there's an advantage to getting the PEG before treatment even begins.
Hope and Pray it was a better day, Ron. It do get rough, but you'll be okay.
kcass
Today Ron is still pretty weak but was able to hold down 3 cans (we have isosource 8.5 ozs of lactose free formula 375 calories dietician recommended 6 per day). He only has 8 more rads to go. Finally feels like the end is in sight. All of you are correct the hydration and nutrients make such a difference. I noticed he was holding himself more upright today, what a difference a day can make. I am so incredibly proud of him. He is a soldier for sure! I know he feels so bad yet he managed to let me know when I was pushing him to eat more that if he vomited it would be on me :-). Made us both laugh and it is so good to see him smile a little.
Kent Ron got his peg before he started treatment but only a few days before. He got it on a Thursday and had his first treatment the next Tuesday chemo and rad. I would not recommend that as his body rejected the peg for the first couple of weeks. He did not stop eating or drinking by mouth until near the end of week 4. I am so glad you all have talked about quantity because I think the 3 cans will be good for now. The radiaologist was most concerned about wieght loss but I think with 3 cans and water he should be able to sustain his weight. The pump will help and it is supposed to come tomorrow.
You all are Angels!! I can't say thank you enough. I was really scared and did not know what to do and you have helped us so much!!
Robyn & Ron0 -
Lizzie, My wife didlizziek said:Cetuximab
I just had a biopsy, they couldn't remove the tumor and I am looking at a recommendation of radiation and chemo (cisplatin). I also have two suspect nodes.
I am doing my research on followup treatments and alternative to the standard recommendation.
What can you tell me about Cetuximab? Was it added to the regular chemo/rad treatment? From what I read it is a monoclonal antibody that can be used with radiation. The trial showed significant increase in survival rates as compared to just radiation.
Do you think it was worth adding this. I guess it would be hard to say where the mouth sores came from since you had all three: radiation, cisplatin and cetuximab.
Where did you get your treatment? What are your long term side effects?
Thanks, I don't have much time to find the right treatment for me.
Lizzie, My wife did Cetuximab along with the other chemo drugs (Cisplatin, Taxotere and 5FU ) and she tolerated it very well. It seemed not to make her sick at all and I think it is a very good drug. She did it with the other drugs the 1st week then the 2nd week she did just Cetuximab by it self then she did nothing the 3rd week. Cetuximab only targets the cancer cells. Good luck with your treatments. Homer & Connie0 -
Robyn, I am sorry to hearRon49 said:Tuesday Update
Today Ron is still pretty weak but was able to hold down 3 cans (we have isosource 8.5 ozs of lactose free formula 375 calories dietician recommended 6 per day). He only has 8 more rads to go. Finally feels like the end is in sight. All of you are correct the hydration and nutrients make such a difference. I noticed he was holding himself more upright today, what a difference a day can make. I am so incredibly proud of him. He is a soldier for sure! I know he feels so bad yet he managed to let me know when I was pushing him to eat more that if he vomited it would be on me :-). Made us both laugh and it is so good to see him smile a little.
Kent Ron got his peg before he started treatment but only a few days before. He got it on a Thursday and had his first treatment the next Tuesday chemo and rad. I would not recommend that as his body rejected the peg for the first couple of weeks. He did not stop eating or drinking by mouth until near the end of week 4. I am so glad you all have talked about quantity because I think the 3 cans will be good for now. The radiaologist was most concerned about wieght loss but I think with 3 cans and water he should be able to sustain his weight. The pump will help and it is supposed to come tomorrow.
You all are Angels!! I can't say thank you enough. I was really scared and did not know what to do and you have helped us so much!!
Robyn & Ron
Robyn, I am sorry to hear Ron is having such a hard time right now. Everything is bad enough when all goes well. Connie finished her radiation treatments on March 17th and she was getting sick every morning about 7-10 days before that. She is still getting sick every morning mostly due to the thick mucous. I try to give her one can after the morning sickness has subsided and this seems to be working, if she feels like it then I will give her another can at this time. Connie also skipped her last chemo as she ended up in the hospital after her 2nd dose of induction chemo. Connie was scheduled for 9 weeks of chemo and then she started her radiation after all chemo was finished. I think Ron is doing chemo & radiation concurrently so their treatment is a little bit different. At first I blamed myself when she got sick in the morning because I thought I was giving the canned nutrition too fast so now I am taking it a lot slower. She has only been getting a hydration IV once a week so far but I leave that up to the radiation oncologist because they should know how badly she is dehydrated. Try to keep reminding Ron that he is getting closer to the end of treatment and talk about things you and he want to do when he is well. Ron is a fine person and so are you and I know this is very hard on you both. You are both a member of the family here now and never hesitate to come on this site to ask any questions on concerns that you may have on Ron's behalf. That's what this site is all about and the people here are special and want to help you & Ron get through this most difficult time. If you don't think Ron can tolerate more chemo then you may have to suspend any more chemo treatments till Ron gains his strength back. I know that this can be a lonely time for you as my wife Connie sleeps a lot right now. Connie is also on the Morphine patch (Fentanyl) and I also give her Hydrocodone through her feeding tube as needed. Stay strong for Ron and we will be praying for you both. We love you , Homer & Connie0
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