Need Your Input For Caregiver
His oncologist wanted him to have three cycles of intensive chemo with Taxotare, Cysplatinum and 5FU. He had the first treatment, and felt pretty much like I did when I had intensive chemo - nausea controlled with meds, fatigue, etc. But the 5FU had to be given over a period of 96 hours, so he had a med pump strapped to him. Five days after the pump came off, he became very ill with vomiting and diarrhea. He spent five days in the hospital, and was still very weak when they discharged him. His oncologist reduced the dosage by 25% so perhaps he wouldn't have such a difficult time with the side effects. Exactly five days after the med pump came off, he was back in the hospital for seven days. He said he wouldn't have any more chemo, that lying in the hospital too weak to even wiggle, not able to even eat jello, or keep water down wasn't something he would suffer the chance of happening again. (His word were "head on one side of the bed, butt on the other side of the bed, spewing in both directions.) His oncologist tried to convince him that the side effects were a far better option than death, but he wouldn't hear of it.
Now they plan to do only the cysplatinum weekly, in combination with 35 daily radiation treatments. Will the cysplatinum make him feel like he did with the first two chemos? His oncologist is blaming the 5FU for the problems, but he has such a sensitive digestive tract that I am not sure. (He spent two years eating Aleeve and hydrocotin for a back problem that has since been remedied. The combination has left him barely able to sip a beer or much else.) Has anyone had cysplatinum only, and experienced severe digestive side effects? I know the radiation will be a bear, from watching my brother go through it. He can handle pain extremely well. (The back thing turned out to be a hip that was bone on bone, which has been replaced. I could not have tolerated it as long as he did.) But the effects on his digestive tract he finds intolerable. When in the hospital he was having white diarrhea because the chemicals stripped his digestive tract from the mouth to the ... end.) He wants to try going through it without a feeding tube, even though he has been told by people who have them how great it is to be able to get nutrients without putting the throat through torture. I am also concerned that his radiation will last thirty minutes each treatment. Mine are only five minutes, and I know what it is doing to me. I can't imagine getting thirty minutes five days a week and not being totally wiped out in a week. I am on my last two weeks, and gravity is getting really strong. Sometimes it holds me down so well I can barely move. I have read enough to know that everyone reacts differently to all this stuff. But I will forgive myself for putting more effort into fighting the Big Old C-Beast than anything else. He about goes stir crazy when he can't do anything. I went on anti-depressants when I was dx, just to keep the anxiety level tolerable. I don't think I could even talk him into that. He takes a few lorazapam when the nausea and inactivity is getting to him, but complains that they make him too lethargic. He is one of those "laugh your troubles away" type of person, and his sense of humor is as good as ever. (Okay, so that kind of worries me too.)
Just someone, please tell me what I might expect from his treatments, and how to be as supportive to him as he has been to me. I am doing everything I know how to from my own experiences, but my experiences may not be enough. He is very open about everything, but he makes everything a funny. (i.e. If I had an animal as sick as me, I would just take it out behind the barn and shoot it.) AAARGH! I am blabbering now!
Any input any of you good people might have would be very welcome. Sometimes gravity keeps me off the computer for a day or two, but I will come back very soon. Stay well, and be blessed.
Thanks you all! Sharon (aka, flakey_flake)
Comments
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throat cancer from the caregiver prospective
Sharon,
I have so many thoughts running through my head after reading your entry. My husband was diagnosed with stage 4a Tonsil Cancer in February. He started 5 days a week of radiation (35 total) at 15 minute intervals and 3 chemo treatments of Cisplatin every 21 days.
We are just a little half way through and it has been very tough. I would not recommend going through this without a feeding tube! My husband has one but couldn't tolerate the feedings so he is now in the hospital due to kidney failure(being reversed-didn't need dialysis) and dehydration. He can not swallow anything by mouth- his own saliva is challenging. He is now getting TPN through his PIC line and that has been such a relief.
I am more then willing to answer any of your questions. It is a long journey but we have been told it has a very high success rate with little to no recurrence. Stay positive and let me know what I can share that could help you both.
Marybeth (aka mb731)0 -
the tube
My boyfriend had 6 weeks of rads, 5 days a week with chemo once a week for 7 hours a day.
He did the whole thing without a tube, tried to keep it up after treatment but finally let go and decided he needed the help, that he couldnt do it alone so he got the tube. He had it for 3-4 months, then got sick of it and got rid of it. He still isnt eating solids and I think he should have kept it a while longer, my point being, many people will say to have the tube put in so as not to worry about yet another issue of obtaining enough nutrients while also dealing with other side effects. Thats been my understanding.
Hope he decides to get the tube. Its not supposed to be a pretty thought, but more of a thankful necessity.
Good luck and post whenever you feel the need.....someone will always respond...
Kathy0 -
Tubethegirlfriend said:the tube
My boyfriend had 6 weeks of rads, 5 days a week with chemo once a week for 7 hours a day.
He did the whole thing without a tube, tried to keep it up after treatment but finally let go and decided he needed the help, that he couldnt do it alone so he got the tube. He had it for 3-4 months, then got sick of it and got rid of it. He still isnt eating solids and I think he should have kept it a while longer, my point being, many people will say to have the tube put in so as not to worry about yet another issue of obtaining enough nutrients while also dealing with other side effects. Thats been my understanding.
Hope he decides to get the tube. Its not supposed to be a pretty thought, but more of a thankful necessity.
Good luck and post whenever you feel the need.....someone will always respond...
Kathy
Sharon- I am biased/the PEG tube advocate, so be advised. Have had mine since 1/29/09, and still have, though have not used for almost a year. Really is nothing more than a nuissance, and during treatment/battle is a blessing. Adequate Nutrition provides the means to fight the best battle possible, and the easiest way to ensure the getting of that nutrition is with a feeding tube, for Head & Neck. Got all my nutrition for 7 weeks in treatment thru it, and returned to work a month after the last rad, and gained all my weight back many months ago.
As for the Cisplatin- that is the bad stuff, when in combo w/rads. Rads, alone, full H&N, was not that big of a deal. But with the Cisplatin= the rough road. And, yes, I was also getting the FU5. My understanding is that the Cisplatin is what makes the road the roughest.
kcass0 -
More QuestionsMb731 said:throat cancer from the caregiver prospective
Sharon,
I have so many thoughts running through my head after reading your entry. My husband was diagnosed with stage 4a Tonsil Cancer in February. He started 5 days a week of radiation (35 total) at 15 minute intervals and 3 chemo treatments of Cisplatin every 21 days.
We are just a little half way through and it has been very tough. I would not recommend going through this without a feeding tube! My husband has one but couldn't tolerate the feedings so he is now in the hospital due to kidney failure(being reversed-didn't need dialysis) and dehydration. He can not swallow anything by mouth- his own saliva is challenging. He is now getting TPN through his PIC line and that has been such a relief.
I am more then willing to answer any of your questions. It is a long journey but we have been told it has a very high success rate with little to no recurrence. Stay positive and let me know what I can share that could help you both.
Marybeth (aka mb731)
Hi Marybeth,
Thanks for repsonding. Sorry to hear it is a tough journey for you and your husband. I guess no one said it would be easy, but we all try to make it as easy as possible.
What is it about feeding through the tube couldn't your husband tolerate? I read so much from people who say it is a God-send, but I know if the Dr asked me to have one, I would balk, but I am somewhat of a woos.
Also what caused your husband's kidney problems? How are they reversing the problem? My boyfriend has a power of attorney that says he will not take dialysis. But if it would get him through treatments, and can be reversed it is maybe something he should reconsider. Did they give him a break from treatment to resolve the problems? Is it too painful for your husband to swallow even his own saliva? Or is there a nausea component to the problem?
What is TIP? Can they give nutrients intraveniously? My boyfriend has a port in, so it is easy access to IV treatments. It would be nice to know what to watch for if that should be something he needs. I would rather try to keep him ahead of the game, so he doesn't get into really terrible shape and need more hospitalization. And the Drs don't always think to tell you what some of the options are. They like to explain only what they think you should do.
You must have your hands full with your husband in the hospital right now. I am grateful that you took the time to repsond. I have added you to my friends, so we can talk through email if you like.
You sound like you are keeping a positive attitude, even through the complications and set-backs. Your husband is fortunate to have you in his corner through this battle. You are both in my prayers. Hope to hear from you soon.
Sharon (ka ff) (Aka's are fun. My boyfriend is John, aka Old Guy)0 -
Why Get Rid of IT When It Helps?thegirlfriend said:the tube
My boyfriend had 6 weeks of rads, 5 days a week with chemo once a week for 7 hours a day.
He did the whole thing without a tube, tried to keep it up after treatment but finally let go and decided he needed the help, that he couldnt do it alone so he got the tube. He had it for 3-4 months, then got sick of it and got rid of it. He still isnt eating solids and I think he should have kept it a while longer, my point being, many people will say to have the tube put in so as not to worry about yet another issue of obtaining enough nutrients while also dealing with other side effects. Thats been my understanding.
Hope he decides to get the tube. Its not supposed to be a pretty thought, but more of a thankful necessity.
Good luck and post whenever you feel the need.....someone will always respond...
Kathy
Hi Kathy (I like your AKA - Girlfriend.)
Again, I am reiterating a question from my last post. What is it about the tube that makes a person want to not have it or get sick of having it? I can understand why you would have preferred your boyfriend keep the tube when is not yet eating solids. I would feel the same way. It is more important to be nutritionally the best you can be. But I fear my boyfriend will have the same attitude as yours. (I don't like it, so I won't use it ... got to love em, huh?) But on the other side of the coin is the possiblility that if he gets a tube he will see the logic and function as a good thing - another weapon in the battle of the big "C". I need a crystal ball here. Anyone got one?
Thanks for your input Girlfriend! I hope your boyfriend will soon be well enough to get some solids. Reminds me of someone we see quite often when we go to our clinic. He has lung cancer, and is doing a chemo/rad combo. Last week he said he got a feeding tube in, and dearly loves it. But he also is making a list of restaraunts he wants to visit when is able. (Being ill you watch alot of TV, and the commercials for food kind of get to you when you can't eat. This guy has good hopes!)
Take Care, and be blessed Girlfriend!
Sharon (aka ff)0 -
More QuestionsKent Cass said:Tube
Sharon- I am biased/the PEG tube advocate, so be advised. Have had mine since 1/29/09, and still have, though have not used for almost a year. Really is nothing more than a nuissance, and during treatment/battle is a blessing. Adequate Nutrition provides the means to fight the best battle possible, and the easiest way to ensure the getting of that nutrition is with a feeding tube, for Head & Neck. Got all my nutrition for 7 weeks in treatment thru it, and returned to work a month after the last rad, and gained all my weight back many months ago.
As for the Cisplatin- that is the bad stuff, when in combo w/rads. Rads, alone, full H&N, was not that big of a deal. But with the Cisplatin= the rough road. And, yes, I was also getting the FU5. My understanding is that the Cisplatin is what makes the road the roughest.
kcass
Hi Kcass,
You sound like you made the best out of a bad situation. What exactly is a PEG tube? Do you still need to have it? Like, are you using it for anything, or think you will? You sound like a "ready to go" survivor. How did you discover it was the cisplatin that it was the culprit that made the rad/chemo combo a bear? What side effects did it give you? Were you surprised that it affected you that way? My brother had more trouble with the throat rads than chemo, but they weren't given congruintly. It was the burning to the throat inside, and outside that got him, and he refused the last week of rads. (Fortunately, no recurrance so far.) As far as I know my boyfriend will be getting only throat rads, not full head and neck. Why were they doing full head rads? How long did your rads last each treatment?
It is good to hear that you did so well. I wish you only good things Kent. And also good to get some pro-tube advice.
Thanks, and be blessed and well.
Sharon (aka ff)0 -
PEG sooner or laterFlakey_Flake said:Why Get Rid of IT When It Helps?
Hi Kathy (I like your AKA - Girlfriend.)
Again, I am reiterating a question from my last post. What is it about the tube that makes a person want to not have it or get sick of having it? I can understand why you would have preferred your boyfriend keep the tube when is not yet eating solids. I would feel the same way. It is more important to be nutritionally the best you can be. But I fear my boyfriend will have the same attitude as yours. (I don't like it, so I won't use it ... got to love em, huh?) But on the other side of the coin is the possiblility that if he gets a tube he will see the logic and function as a good thing - another weapon in the battle of the big "C". I need a crystal ball here. Anyone got one?
Thanks for your input Girlfriend! I hope your boyfriend will soon be well enough to get some solids. Reminds me of someone we see quite often when we go to our clinic. He has lung cancer, and is doing a chemo/rad combo. Last week he said he got a feeding tube in, and dearly loves it. But he also is making a list of restaraunts he wants to visit when is able. (Being ill you watch alot of TV, and the commercials for food kind of get to you when you can't eat. This guy has good hopes!)
Take Care, and be blessed Girlfriend!
Sharon (aka ff)
Hi FF,
I had my PEG installed in week 3 of treatment. I did get a dose of pneumonia during the procedure maybe because I was weak ??? That wasn't fun but I survived.
If I had the choice again, I would have had it put in before treatment started but both options are available. If your man is a hard head he may opt to 'wait n see' which I suppose you have to respect.
There may other items that need a harder approach as to preparation but it would be good if he got on these pages and talked to those of us who hav been there. It may give him direct insight which will help him take actions.
While my PEG probably saved my life - I was damn glad to get rid of it. They are a mild nuisance and not exactly an attractive appendage so apart from 'gittin' grits into yer' they have no real other value.
Cheers
Scam0 -
Cisplatin
Hi Sharon,
As you have probably already read, many times, everyone responds differently to treatment. I am a perfect example, many have stated that cisplatin is the "big guns" in chemo and they are correct. Add radiation to the mix and you can really get "wiped out".
I had 2 days of cisplatin in 3 week cycles and 7 weeks of radiation for the SCC laryngeal cancer and Stereotactic Radiosurgery for the lung cancer. I was told before starting chemo that I would lose my hair, feel fatigued and have nausea. Wrong, I never lost my hair ;-) but I was tired which was partly caused by the radiation. I had nausea for a few days after each chemo session but it was mostly controlled by the meds I was prescribed. I am probably exaggerating if I say I threw up 3 times throughout the entire treatment. I, somehow, was lucky and didn't get the worst of the possible side effects. Not everyone does and I strongly feel that the side effects are well worth the end results. I was stage 3A laryngeal cancer with no voice when I started and am now in remission (since Jan '10) I just got the results of my latest scan last week and my doctors are in awe, the tumor in my lung has shrunk so much they can't find it anymore - LOL. They told me if it was there it was so small that it was hiding behind some scar tissue.
My original prognosis was very bleak, especially since I was battling 2 different types of cancers at once, not mets. For a very brief time I also wondered if treatment was worth it. I am grateful everyday that I made the right choice and told my cancer doctors to do whatever they could for me, I wasn't asking for a cure as I know this was not possible but wanted at least 5 years of remission (more would be better ;-) and they assured me that this was definitely a strong possibility. I am feeling better everyday and would go through it all again if necessary, the alternaive SUCKS!!
Please don't give up, there is always hope but you have to keep a positive attitude. It's normal to have an occasional "pity party" but you must not let cancer consume your thoughts. Do whatever it takes to keep your mind occupied on happier things, family, friends, getting outside for short walks, crafts, read a good book, etc.
Stay positive and stay strong,
Glenna0 -
Chemo/RadiationGlenna M said:Cisplatin
Hi Sharon,
As you have probably already read, many times, everyone responds differently to treatment. I am a perfect example, many have stated that cisplatin is the "big guns" in chemo and they are correct. Add radiation to the mix and you can really get "wiped out".
I had 2 days of cisplatin in 3 week cycles and 7 weeks of radiation for the SCC laryngeal cancer and Stereotactic Radiosurgery for the lung cancer. I was told before starting chemo that I would lose my hair, feel fatigued and have nausea. Wrong, I never lost my hair ;-) but I was tired which was partly caused by the radiation. I had nausea for a few days after each chemo session but it was mostly controlled by the meds I was prescribed. I am probably exaggerating if I say I threw up 3 times throughout the entire treatment. I, somehow, was lucky and didn't get the worst of the possible side effects. Not everyone does and I strongly feel that the side effects are well worth the end results. I was stage 3A laryngeal cancer with no voice when I started and am now in remission (since Jan '10) I just got the results of my latest scan last week and my doctors are in awe, the tumor in my lung has shrunk so much they can't find it anymore - LOL. They told me if it was there it was so small that it was hiding behind some scar tissue.
My original prognosis was very bleak, especially since I was battling 2 different types of cancers at once, not mets. For a very brief time I also wondered if treatment was worth it. I am grateful everyday that I made the right choice and told my cancer doctors to do whatever they could for me, I wasn't asking for a cure as I know this was not possible but wanted at least 5 years of remission (more would be better ;-) and they assured me that this was definitely a strong possibility. I am feeling better everyday and would go through it all again if necessary, the alternaive SUCKS!!
Please don't give up, there is always hope but you have to keep a positive attitude. It's normal to have an occasional "pity party" but you must not let cancer consume your thoughts. Do whatever it takes to keep your mind occupied on happier things, family, friends, getting outside for short walks, crafts, read a good book, etc.
Stay positive and stay strong,
Glenna
My husband was also made very ill by the 5FU chemo. They had to stop that medication. He continued with Cisplatin and Radiation. His treatments are complete now. He opted not to get the peg tube (feeding tube) when we started but ultimately ended up with one. It is what has kept his strength up and made it easier to get medication in him. It is not perfect, the supplements can cause issues... but it is so much better than the alternative, it is definatley worth it. ( and you must remember it is temporary)
Radiation takes a different role in Head and neck cancer treatment than it does in breast cancer treatment. Radiation is the leader in the treatment here and chemo is the assisant.. it is a difficult road, that continues even after they have completed treatments. The throat is a central part of the body, swallowing, talking, breathing.. every momment of every day it is used and the patients struggling (WINNING) this battle have a lot to deal with... as to their caretakers. This board has been wonderful for answering questions...most times you dont' even have to ask because they are already discussing your problem...take the time to read past posts you will find them very informative.0 -
Sharon,Flakey_Flake said:More Questions
Hi Marybeth,
Thanks for repsonding. Sorry to hear it is a tough journey for you and your husband. I guess no one said it would be easy, but we all try to make it as easy as possible.
What is it about feeding through the tube couldn't your husband tolerate? I read so much from people who say it is a God-send, but I know if the Dr asked me to have one, I would balk, but I am somewhat of a woos.
Also what caused your husband's kidney problems? How are they reversing the problem? My boyfriend has a power of attorney that says he will not take dialysis. But if it would get him through treatments, and can be reversed it is maybe something he should reconsider. Did they give him a break from treatment to resolve the problems? Is it too painful for your husband to swallow even his own saliva? Or is there a nausea component to the problem?
What is TIP? Can they give nutrients intraveniously? My boyfriend has a port in, so it is easy access to IV treatments. It would be nice to know what to watch for if that should be something he needs. I would rather try to keep him ahead of the game, so he doesn't get into really terrible shape and need more hospitalization. And the Drs don't always think to tell you what some of the options are. They like to explain only what they think you should do.
You must have your hands full with your husband in the hospital right now. I am grateful that you took the time to repsond. I have added you to my friends, so we can talk through email if you like.
You sound like you are keeping a positive attitude, even through the complications and set-backs. Your husband is fortunate to have you in his corner through this battle. You are both in my prayers. Hope to hear from you soon.
Sharon (ka ff) (Aka's are fun. My boyfriend is John, aka Old Guy)
If I miss anything- please let me know. First- the peg tube as annoying as it my be is essential for some. My advice is to get it and in the worse case scenario if he can't swallow anything he can get needed nutrition. My husband has a sensitive stomach so possible the formula doesn't agree. When he was nauseous he didn't want to put anything in the tube not even water. He would gag and throw up. They placed a PIC line and the food that he gets now is calld TPN and that goes through the PIC line. It is specially made for the vitamins and minerals that you need. Nutrition is absolutely important but if you can't swallow anything, you will not be able to eat the things that you need.
My husband received Cisplatin only for his chemo treatments. Cisplatin is very hard on the kidneys that is why they flush with fluids prior and after. He gets admitted for these treatments to provide more comfort for the patient. My husband Doug had Acute Renal Failure but he went into the hospital for more fluids to help them start working better on their own without dialysis. The bun and creat levels(they indicate kidney function) have gotten better
but they are not where they need to be yet.
My husband hs had huge issues with nausea and vomiting. Everyone is different. The radiation has dried his throat out so much that it hurts to swallow even his oen saliva so he doesn't do much of it if he can. The saliva thickens with radiation treatments to the neck area. I am told that this is very normal. Not to sound gross but it doesn't look healthy but they say that is part of it.
I would highly recommend saline swishes/magic swizzle/caphosol(moistens the mouth area). I would suggest talking to a doctor about the dialysis issue. Most times the issues are reversed with the kidneys but there is a risk. You have to think of the outcome.
I beleive I saw some conversation about HPV throat cancer. My husband is a non smoker and he is positive for HPV Tonsil Cancer. The ENT and the radiation doctor both told us that HPV throat cancers have a better cure rate.
My husband did not have a port placed but he did get a PIC line and that is where he is receiving the nutrients now. He did not have that originally and now I wish he would have because we are waiting results for a blood clot in the arm where he received the chemo by IV. So- maybe we could have avoided this if we had a port from the get go- we won't know. So on we go.
I have to say this is the toughest thing that I have ever had to do so get ready. I think I am fairly medical-wise and did work in a Cancer Center but this is far more overwhelming when you are dealing with a loved one.
If I missed anything please let me know. You can email me also. My husband is still in he hospital, he had to get a blood transfusion due to the chemo knocking everything out of him. And still waiting for the kidneys to get better. I am not sure if he will get his last chemo but he still is getting radiation mon-fri.
Talk to you soon,
Marybeth0 -
My AnswersFlakey_Flake said:More Questions
Hi Kcass,
You sound like you made the best out of a bad situation. What exactly is a PEG tube? Do you still need to have it? Like, are you using it for anything, or think you will? You sound like a "ready to go" survivor. How did you discover it was the cisplatin that it was the culprit that made the rad/chemo combo a bear? What side effects did it give you? Were you surprised that it affected you that way? My brother had more trouble with the throat rads than chemo, but they weren't given congruintly. It was the burning to the throat inside, and outside that got him, and he refused the last week of rads. (Fortunately, no recurrance so far.) As far as I know my boyfriend will be getting only throat rads, not full head and neck. Why were they doing full head rads? How long did your rads last each treatment?
It is good to hear that you did so well. I wish you only good things Kent. And also good to get some pro-tube advice.
Thanks, and be blessed and well.
Sharon (aka ff)
Sharon
1) A PEG is a feeding tube that's held in the stomach by a button with a bigger diameter than the tube hole in the stomach wall- that tube leading out to a dog-ear flap against the outer stomach, with additional tubing of some 10" that you keep taped to the chest when not in use; and, at the top, there's a housing with a removable lid that seals closed and is opened when pouring the feeding liquid down the tube.
2) No- I haven't used for about a year, but have kept in the event of a return of the C, and need to use again. Soon to get it removed.
3) As for the Cisplatin- experience. My delivery was more aggressive than most others, and the wake of my two Cisplatin deliverys was when I got knocked-down onto the canvas a few times. My physical condition improved once the Cisplatin/FU5 delivery was wearing-off, and I WAS STILL GETTING just the rads. Had to be the combo of the C&R, with the delivery I got, that did such a number on me. And, my Onco knew it was gonna happen- she told me they'd have me on morphine the first office visit I had with her, along with not having an option on getting a Port and PEG.
4) Side-effects: NPC being my C, and your boyfriend not being treated as I was, let us just leave it at my mouth becoming a trainwreck. And, there were the typical effects of nausea, nosebleeds, sore throat and trouble swallowing even chopped-up pills, and digestive/regularity function issues; and, the event of infection after the 2nd Chemo delivery- that made me incapable of the rads, and put me in a hospital for four days. As for being surprised, Sharon- no: this is battle with the Big C, and the only rule is Come What May. The biggest surprise I got was in how well my body recovered- and I give the PEG and quality Nutrition a lot of the credit. And, of course, Jesus and my strength of Faith.
5) They did the full H&N C&R because of the Unknown Primary, and NPC.
6) The rad sessions lasted some 25-minutes, with getting zapped in 20 different H&N areas while clamped with the beloved (!?) skull mask.
Sharon, these are the best answers I can give to your specific questions. While H&N is one of the Cs which have a great survivor record- the means to surviving can put one thru one heckuva battle. But all of us have fought and won our battles. And, sure, the battle leaves it's physical marks on one, but the bottom-line is the fact of casting breath.
The best to you, and...
Believe
kcass0 -
Hi SharonFlakey_Flake said:Why Get Rid of IT When It Helps?
Hi Kathy (I like your AKA - Girlfriend.)
Again, I am reiterating a question from my last post. What is it about the tube that makes a person want to not have it or get sick of having it? I can understand why you would have preferred your boyfriend keep the tube when is not yet eating solids. I would feel the same way. It is more important to be nutritionally the best you can be. But I fear my boyfriend will have the same attitude as yours. (I don't like it, so I won't use it ... got to love em, huh?) But on the other side of the coin is the possiblility that if he gets a tube he will see the logic and function as a good thing - another weapon in the battle of the big "C". I need a crystal ball here. Anyone got one?
Thanks for your input Girlfriend! I hope your boyfriend will soon be well enough to get some solids. Reminds me of someone we see quite often when we go to our clinic. He has lung cancer, and is doing a chemo/rad combo. Last week he said he got a feeding tube in, and dearly loves it. But he also is making a list of restaraunts he wants to visit when is able. (Being ill you watch alot of TV, and the commercials for food kind of get to you when you can't eat. This guy has good hopes!)
Take Care, and be blessed Girlfriend!
Sharon (aka ff)
This is the thing with "the boyfriend". He was clearly grateful for the tube when he finally gave in and accepted he needed the help to get fed. He admitted he couldnt do it alone.
My guy is very very stubborn, impatient, one of the original tough guys, a Viet Nam vet, retire cop. Tough, Charles Bronson, Wilhem Defoe tough. So it made sense to me, i didnt like it, but made sense because of how i know him, that since he was maintaining weight now with the tube, that he if he had no choice, he would he via his mouth. He was grateful for the tube, but doesnt mean he liked the whole idea of it. With no patience, he was determined to eat normally, is a cook (cooking school cook), so he truly enjoyed cooking/eating.
So by putting himself in a position that there was no choice, he would then eat. It hasnt exactly worked out they way he planned, but he now has to force down the protein mix shakes, etc that he can get down, because he has no choice. Should he have left the tube? I think so, but then Im not the one going thru that glamour of food consumption either.
Other than the act of feeding himself, he couldnt stand having this hook up mess taped to himself. Like I said, not alot of patience. He is used to fighting and killing the enemy, and this has proved to be an enemy that doesnt want to stay down, so to speak, so it pisses him off a great deal. So maybe his getting rid of the tube in his mind was his way of communicating to the enemy so there! I dont need that tube, I will do what i can thru my mouth because its my choice and I have control of that choice. Loss of control with his background is not the easiest thing to face.
I suppose I understand this because I know his personality. Doesnt mean i like to see him have trouble, or like the i told you so thing, God no. Again, what he intended, actually is sorta working. He really does have no choice now but to eat thru his mouth. Now if we could get some real solids down him instead of just the shakes, and liquids.
He really wants to eat again. He wants to taste, and eat solids, and try to get to some sort of familiar normalcy. Some, well he wants it all, but i think he will be very excited if he got some for now anyway. But he is impatient and stubborn. So i just ask periodically during each day, if he "ate" , or dont forget to eat, even though i know he wont forget.
Just that normal, significant other stuff of fussing. He knows I cant see, from 500 miles away, he lets me do my fussing.
Ref the tv stuff, he watches the FOOD Network!! writes down everything he wants to cook or eat, what places he wants to go to eat stuff.
Hope you have better luck, if you do, let me in on how you did it!! lol!
Kathy
thegirlfriend0 -
SharonMb731 said:Sharon,
If I miss anything- please let me know. First- the peg tube as annoying as it my be is essential for some. My advice is to get it and in the worse case scenario if he can't swallow anything he can get needed nutrition. My husband has a sensitive stomach so possible the formula doesn't agree. When he was nauseous he didn't want to put anything in the tube not even water. He would gag and throw up. They placed a PIC line and the food that he gets now is calld TPN and that goes through the PIC line. It is specially made for the vitamins and minerals that you need. Nutrition is absolutely important but if you can't swallow anything, you will not be able to eat the things that you need.
My husband received Cisplatin only for his chemo treatments. Cisplatin is very hard on the kidneys that is why they flush with fluids prior and after. He gets admitted for these treatments to provide more comfort for the patient. My husband Doug had Acute Renal Failure but he went into the hospital for more fluids to help them start working better on their own without dialysis. The bun and creat levels(they indicate kidney function) have gotten better
but they are not where they need to be yet.
My husband hs had huge issues with nausea and vomiting. Everyone is different. The radiation has dried his throat out so much that it hurts to swallow even his oen saliva so he doesn't do much of it if he can. The saliva thickens with radiation treatments to the neck area. I am told that this is very normal. Not to sound gross but it doesn't look healthy but they say that is part of it.
I would highly recommend saline swishes/magic swizzle/caphosol(moistens the mouth area). I would suggest talking to a doctor about the dialysis issue. Most times the issues are reversed with the kidneys but there is a risk. You have to think of the outcome.
I beleive I saw some conversation about HPV throat cancer. My husband is a non smoker and he is positive for HPV Tonsil Cancer. The ENT and the radiation doctor both told us that HPV throat cancers have a better cure rate.
My husband did not have a port placed but he did get a PIC line and that is where he is receiving the nutrients now. He did not have that originally and now I wish he would have because we are waiting results for a blood clot in the arm where he received the chemo by IV. So- maybe we could have avoided this if we had a port from the get go- we won't know. So on we go.
I have to say this is the toughest thing that I have ever had to do so get ready. I think I am fairly medical-wise and did work in a Cancer Center but this is far more overwhelming when you are dealing with a loved one.
If I missed anything please let me know. You can email me also. My husband is still in he hospital, he had to get a blood transfusion due to the chemo knocking everything out of him. And still waiting for the kidneys to get better. I am not sure if he will get his last chemo but he still is getting radiation mon-fri.
Talk to you soon,
Marybeth
I was the caregiver to my husband while he went through treatment last Aug and Sept. He had his feeding tube placed prior to treatment as his oncos pretty much said that this is protocol and really didn't offer any other options He went thru the first 3eeks without using it, buy then the weight loss set in so we started using it He got very nauseated at first and we had to try a number of supplements before finding one that he could tolerate(he also took an anti nausea med). He continued to use his tube for a couple of weeks after chemo and rads ended. He had his first PET SCAN Jan 1 and all was perfect. He will have another scan next Tues. He is doing very well. Lots of energy, eating well although taste is a little off, maintaining weight, looks and feels great. Hang in and Hang on!!!!
Phyllis0 -
Getting Through What May ComeKent Cass said:My Answers
Sharon
1) A PEG is a feeding tube that's held in the stomach by a button with a bigger diameter than the tube hole in the stomach wall- that tube leading out to a dog-ear flap against the outer stomach, with additional tubing of some 10" that you keep taped to the chest when not in use; and, at the top, there's a housing with a removable lid that seals closed and is opened when pouring the feeding liquid down the tube.
2) No- I haven't used for about a year, but have kept in the event of a return of the C, and need to use again. Soon to get it removed.
3) As for the Cisplatin- experience. My delivery was more aggressive than most others, and the wake of my two Cisplatin deliverys was when I got knocked-down onto the canvas a few times. My physical condition improved once the Cisplatin/FU5 delivery was wearing-off, and I WAS STILL GETTING just the rads. Had to be the combo of the C&R, with the delivery I got, that did such a number on me. And, my Onco knew it was gonna happen- she told me they'd have me on morphine the first office visit I had with her, along with not having an option on getting a Port and PEG.
4) Side-effects: NPC being my C, and your boyfriend not being treated as I was, let us just leave it at my mouth becoming a trainwreck. And, there were the typical effects of nausea, nosebleeds, sore throat and trouble swallowing even chopped-up pills, and digestive/regularity function issues; and, the event of infection after the 2nd Chemo delivery- that made me incapable of the rads, and put me in a hospital for four days. As for being surprised, Sharon- no: this is battle with the Big C, and the only rule is Come What May. The biggest surprise I got was in how well my body recovered- and I give the PEG and quality Nutrition a lot of the credit. And, of course, Jesus and my strength of Faith.
5) They did the full H&N C&R because of the Unknown Primary, and NPC.
6) The rad sessions lasted some 25-minutes, with getting zapped in 20 different H&N areas while clamped with the beloved (!?) skull mask.
Sharon, these are the best answers I can give to your specific questions. While H&N is one of the Cs which have a great survivor record- the means to surviving can put one thru one heckuva battle. But all of us have fought and won our battles. And, sure, the battle leaves it's physical marks on one, but the bottom-line is the fact of casting breath.
The best to you, and...
Believe
kcass
Hi kcass,
I hope my boyfriend can find the kind of determination you have. Thank you so much for your input. I totally agree with your "come what may" theory. I learned that with my bc. What I thought going into it, is definately not what I think coming out. The experience so so fraught with unusual twists and turns that took me by surprise. I expect no less with my boyfriend's journey. Yes, I think this will be a rough and tough thing ahead of us, and his love for life will be put to the test. I know I couldn't be putting one foot in front of the other if it weren't for my faith in Jesus. That will be my biggest weapon in this battle, and I know that He won't fail me. I am happy you had a good outcome, and will think of your words often in the coming months.
Sharon0 -
MarybethMb731 said:Sharon,
If I miss anything- please let me know. First- the peg tube as annoying as it my be is essential for some. My advice is to get it and in the worse case scenario if he can't swallow anything he can get needed nutrition. My husband has a sensitive stomach so possible the formula doesn't agree. When he was nauseous he didn't want to put anything in the tube not even water. He would gag and throw up. They placed a PIC line and the food that he gets now is calld TPN and that goes through the PIC line. It is specially made for the vitamins and minerals that you need. Nutrition is absolutely important but if you can't swallow anything, you will not be able to eat the things that you need.
My husband received Cisplatin only for his chemo treatments. Cisplatin is very hard on the kidneys that is why they flush with fluids prior and after. He gets admitted for these treatments to provide more comfort for the patient. My husband Doug had Acute Renal Failure but he went into the hospital for more fluids to help them start working better on their own without dialysis. The bun and creat levels(they indicate kidney function) have gotten better
but they are not where they need to be yet.
My husband hs had huge issues with nausea and vomiting. Everyone is different. The radiation has dried his throat out so much that it hurts to swallow even his oen saliva so he doesn't do much of it if he can. The saliva thickens with radiation treatments to the neck area. I am told that this is very normal. Not to sound gross but it doesn't look healthy but they say that is part of it.
I would highly recommend saline swishes/magic swizzle/caphosol(moistens the mouth area). I would suggest talking to a doctor about the dialysis issue. Most times the issues are reversed with the kidneys but there is a risk. You have to think of the outcome.
I beleive I saw some conversation about HPV throat cancer. My husband is a non smoker and he is positive for HPV Tonsil Cancer. The ENT and the radiation doctor both told us that HPV throat cancers have a better cure rate.
My husband did not have a port placed but he did get a PIC line and that is where he is receiving the nutrients now. He did not have that originally and now I wish he would have because we are waiting results for a blood clot in the arm where he received the chemo by IV. So- maybe we could have avoided this if we had a port from the get go- we won't know. So on we go.
I have to say this is the toughest thing that I have ever had to do so get ready. I think I am fairly medical-wise and did work in a Cancer Center but this is far more overwhelming when you are dealing with a loved one.
If I missed anything please let me know. You can email me also. My husband is still in he hospital, he had to get a blood transfusion due to the chemo knocking everything out of him. And still waiting for the kidneys to get better. I am not sure if he will get his last chemo but he still is getting radiation mon-fri.
Talk to you soon,
Marybeth
Wow and Wow! I had no idea cisplatin could do that. My boyfriend's onc didn't even mention kidney problems, and when I looked up side effects online, it doesn't mention it there either. But we are all made differently, and react differently. I will certainly remember to bring up the kidney issue with my boyfriend and his onc. John (bf) has such a touchy stomache that the whole thing scares me. I see alot of promblems ahead, mostly with the chemo part. He has already got his mouth wetting kit, but I see simularities between John and Doug. At least he has his port in, so if it comes to the worst he can receive neccessary nutrients and hydration.
Another stupid question - What is HPV Cancer? (The world is so filled with acronyms) I appreciate your input, Marybeth. And I am prepared to dig in my heels and do my utmost to help get John through this. I hope Doug is on the mend soon, and your lives can get to a new normal. Feel free to email me through CSN email. Stay strong and be blessed!
Sharon0 -
Girlfriend, aka Kathythegirlfriend said:Hi Sharon
This is the thing with "the boyfriend". He was clearly grateful for the tube when he finally gave in and accepted he needed the help to get fed. He admitted he couldnt do it alone.
My guy is very very stubborn, impatient, one of the original tough guys, a Viet Nam vet, retire cop. Tough, Charles Bronson, Wilhem Defoe tough. So it made sense to me, i didnt like it, but made sense because of how i know him, that since he was maintaining weight now with the tube, that he if he had no choice, he would he via his mouth. He was grateful for the tube, but doesnt mean he liked the whole idea of it. With no patience, he was determined to eat normally, is a cook (cooking school cook), so he truly enjoyed cooking/eating.
So by putting himself in a position that there was no choice, he would then eat. It hasnt exactly worked out they way he planned, but he now has to force down the protein mix shakes, etc that he can get down, because he has no choice. Should he have left the tube? I think so, but then Im not the one going thru that glamour of food consumption either.
Other than the act of feeding himself, he couldnt stand having this hook up mess taped to himself. Like I said, not alot of patience. He is used to fighting and killing the enemy, and this has proved to be an enemy that doesnt want to stay down, so to speak, so it pisses him off a great deal. So maybe his getting rid of the tube in his mind was his way of communicating to the enemy so there! I dont need that tube, I will do what i can thru my mouth because its my choice and I have control of that choice. Loss of control with his background is not the easiest thing to face.
I suppose I understand this because I know his personality. Doesnt mean i like to see him have trouble, or like the i told you so thing, God no. Again, what he intended, actually is sorta working. He really does have no choice now but to eat thru his mouth. Now if we could get some real solids down him instead of just the shakes, and liquids.
He really wants to eat again. He wants to taste, and eat solids, and try to get to some sort of familiar normalcy. Some, well he wants it all, but i think he will be very excited if he got some for now anyway. But he is impatient and stubborn. So i just ask periodically during each day, if he "ate" , or dont forget to eat, even though i know he wont forget.
Just that normal, significant other stuff of fussing. He knows I cant see, from 500 miles away, he lets me do my fussing.
Ref the tv stuff, he watches the FOOD Network!! writes down everything he wants to cook or eat, what places he wants to go to eat stuff.
Hope you have better luck, if you do, let me in on how you did it!! lol!
Kathy
thegirlfriend
Hey Kathy -
My boyfriend (John) is pretty tough, but also has alot of patience. I have to chuckle when you talk about how getting the tube out was a message to the big "C". When I think of John getting a feeding tube, I can only imagine he will get out his dremmel tool and some duct tape, and it will never be the same. As active as John likes to be I can't really imagine he will put up with a tube taped to his chest. He will have it totally trashed with his carrying on at his farm. John is like a big kid, and can't help but have to feel the newborn calf, and chase the gooslings. He also loves cooking and eating (not schooled, self taught) and with his taste buds done in by chemo, he is becoming miserable. He has already picked out which restaraunt he wants to go to when his taste buds return. I guess we all have different methods of control. My method is to let God have control. He is so much wiser than me, and has never let me down. (May not always get what I want, but I never feel let down.) John starts his radiation/chemo next week. I too always ask what he has eaten, as this is his last chance to bulk up for the battle. He will have seven weeks of radiation, and I know it will feel much longer. Thanks for your input, girlfriend. I like your attitude!
Sharon0 -
Hi GlennaGlenna M said:Cisplatin
Hi Sharon,
As you have probably already read, many times, everyone responds differently to treatment. I am a perfect example, many have stated that cisplatin is the "big guns" in chemo and they are correct. Add radiation to the mix and you can really get "wiped out".
I had 2 days of cisplatin in 3 week cycles and 7 weeks of radiation for the SCC laryngeal cancer and Stereotactic Radiosurgery for the lung cancer. I was told before starting chemo that I would lose my hair, feel fatigued and have nausea. Wrong, I never lost my hair ;-) but I was tired which was partly caused by the radiation. I had nausea for a few days after each chemo session but it was mostly controlled by the meds I was prescribed. I am probably exaggerating if I say I threw up 3 times throughout the entire treatment. I, somehow, was lucky and didn't get the worst of the possible side effects. Not everyone does and I strongly feel that the side effects are well worth the end results. I was stage 3A laryngeal cancer with no voice when I started and am now in remission (since Jan '10) I just got the results of my latest scan last week and my doctors are in awe, the tumor in my lung has shrunk so much they can't find it anymore - LOL. They told me if it was there it was so small that it was hiding behind some scar tissue.
My original prognosis was very bleak, especially since I was battling 2 different types of cancers at once, not mets. For a very brief time I also wondered if treatment was worth it. I am grateful everyday that I made the right choice and told my cancer doctors to do whatever they could for me, I wasn't asking for a cure as I know this was not possible but wanted at least 5 years of remission (more would be better ;-) and they assured me that this was definitely a strong possibility. I am feeling better everyday and would go through it all again if necessary, the alternaive SUCKS!!
Please don't give up, there is always hope but you have to keep a positive attitude. It's normal to have an occasional "pity party" but you must not let cancer consume your thoughts. Do whatever it takes to keep your mind occupied on happier things, family, friends, getting outside for short walks, crafts, read a good book, etc.
Stay positive and stay strong,
Glenna
Hi Glenna,
You had a double whammy, huh! It sounds like you tolerated the treatments quite well. And had good results. That is very encouraging. I am sure my boyfriend will be pretty wiped out by treatment, and expect that. Hopefully he can get something down his throat to keep going on. I guess that is my big concern. Even if we find side effects at their worst, it is definately worth going through. There is always the comfort of knowing that it won't last any longer than seven weeks. BTW, the dog you have pictured looks just like one my boyfriends dogs, except his "Snuffles" has a pink nose. And a personality that just won't quit.
Thanks for your story Glenna. I will stay strong in Jesus, and fight to the end!0 -
Phylispk said:Sharon
I was the caregiver to my husband while he went through treatment last Aug and Sept. He had his feeding tube placed prior to treatment as his oncos pretty much said that this is protocol and really didn't offer any other options He went thru the first 3eeks without using it, buy then the weight loss set in so we started using it He got very nauseated at first and we had to try a number of supplements before finding one that he could tolerate(he also took an anti nausea med). He continued to use his tube for a couple of weeks after chemo and rads ended. He had his first PET SCAN Jan 1 and all was perfect. He will have another scan next Tues. He is doing very well. Lots of energy, eating well although taste is a little off, maintaining weight, looks and feels great. Hang in and Hang on!!!!
Phyllis
Hi Phylis,
My boyfriend's onc is allowing him to start treatment without the tube, although if worst comes to worse he can have one put in. My brother also went through throat cancer without a tube, but says it was pure he**. John (bf) has already lost 20 pounds from his first rounds of chemo. Although he says he doesn't miss those pounds, I keep encouraging him to eat lots now before he starts radiation. I probably sound like I am nagging, but don't care. I just want him to know that it will be a tough fight and he will feel like he has been put through the proverbial wringer. Thanks for your input, Phylis. I have another motto I like - When you think you have reached the end of the rope ... tie a knot and hang on. Keep smilin' cyber hugs - Sharon0 -
ScamScambuster said:PEG sooner or later
Hi FF,
I had my PEG installed in week 3 of treatment. I did get a dose of pneumonia during the procedure maybe because I was weak ??? That wasn't fun but I survived.
If I had the choice again, I would have had it put in before treatment started but both options are available. If your man is a hard head he may opt to 'wait n see' which I suppose you have to respect.
There may other items that need a harder approach as to preparation but it would be good if he got on these pages and talked to those of us who hav been there. It may give him direct insight which will help him take actions.
While my PEG probably saved my life - I was damn glad to get rid of it. They are a mild nuisance and not exactly an attractive appendage so apart from 'gittin' grits into yer' they have no real other value.
Cheers
Scam
Yeah, I do need to respect his not wanting to have the tube. I wish I could get him to get on this discussion board, but his computer skills are limited to checking the weather and playing card games. I have mentioned it to him, and always talk about things I have learned on this board and the breast cancer board. But he has no interest in communicating via computer. Some people are just like that. But he is happy in his world, so gotta' love him. He does have a port put in, so if worst comes to worse he can get something through that. He is just kind of grossed out by the thought of a tube. But sometimes you gotta do what you don't want to. We will get through, by the Grace of God and good friends.
Sharon0 -
Wifeforlifewifeforlife said:Chemo/Radiation
My husband was also made very ill by the 5FU chemo. They had to stop that medication. He continued with Cisplatin and Radiation. His treatments are complete now. He opted not to get the peg tube (feeding tube) when we started but ultimately ended up with one. It is what has kept his strength up and made it easier to get medication in him. It is not perfect, the supplements can cause issues... but it is so much better than the alternative, it is definatley worth it. ( and you must remember it is temporary)
Radiation takes a different role in Head and neck cancer treatment than it does in breast cancer treatment. Radiation is the leader in the treatment here and chemo is the assisant.. it is a difficult road, that continues even after they have completed treatments. The throat is a central part of the body, swallowing, talking, breathing.. every momment of every day it is used and the patients struggling (WINNING) this battle have a lot to deal with... as to their caretakers. This board has been wonderful for answering questions...most times you dont' even have to ask because they are already discussing your problem...take the time to read past posts you will find them very informative.
Hi Wife,
Hmmm ... no one has told me that radiation is the big fighter here. That is kind of what John (bf) has been thinking, but no one ever has confirmed it. I feel for him because the throat is a much more difficult area to have radiation. My poor breast at least is pretty much an unused area. Thanks for you input, and I will continue reading the posts on this board. I also have learned alot from those who have posted to my thread. For a place no one really wants to go to, I am finding these boards vital to what life has dealt me, and I am grateful they are here. Thanks Wifeforlife.
Sharon0
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