New to board, father in bad shape, looking for info
My father was diagnosed with stage 3 Esophageal cancer just a couple of months ago it seems like. He was very quickly put into a 7 week treatment of both chemo and radiation. Week 5 of 7 came and the treatment was so brutal on him, he became "dangerously malnourished" and was rushed to the hospital where he has been now for over a week. His throat was blistered raw and he could not eat or drink anything; couldn't even swallow his pain pills.
He was sent to the hospital to get a feeding tube installed (for lack of better term) but he's now been there for over a week and it seems like he isn't going to leave any time soon. As of today they have him taking fluids from a bag, along with the feeding tube, and they got him on oxygen. He can barely talk (usually a couple words an hour at most) and is only communicating by a notepad or hand signals/facial expressions. A few days ago his temperature spiked to 103 and they did some blood cultures, made him pee in a cup and took a chest xray looking for infections or possible pneumonia. The nurses said they didn't find anything wrong it must be the radiation.
The nurses ask him to rate his pain on a scale of 1 - 10 with 1 being not bad at all and 10 being unbearable and he says he stays consistently an 8. They give him 8mg of morphine every 3 hours. While it helps with his pain it constantly knocks him in and out of consciousness.
I guess that's what makes this seem like there's no end in sight. He only had 9 more radiation treatments and 1 week of chemo left and now it seems like he's in limbo at the hospital constantly getting morphine and given nourishment through these tubes. Has anyone else gone through this? Do people actually recover and able to get back to finish their treatments? I'm worried that if this takes too much longer his treatment will become ineffective. Although at the same time, it seems the aggressiveness of his treatment put him in this predicament to begin with.
I spend my days sleeping, going to work and being with him. That's pretty much all I do. I work 3rd shift so the moment i get off work I rush to the hospital to spend 3 - 4hrs with him before I go home and go to bed; then up back to work and back to the hospital (rinse/repeat). He and I both served in the Corps but it tears me apart seeing him like this. Just a few months ago we were playing softball twice a week, he was in excellent shape and life was wonderful. Now he can't talk, stuck to all sorts of tubes and has lost so much weight he's too weak to do anything.
Is there any hope that the feeding tube and fluids will get him back the strength to finish out his treatment? What do we do about his pain? It's not like the hospital will allow my mom to give him morphine all the time. That's what freaks me out the most is how much they are giving him and how often they are giving it to him. When does it end? Is there anything else that can at least lessen the pain? He's a tough man and has a high tolerance for pain but apparently this is just too much even for him and I don't know what to do.
The radiation on his neck caused practically all his skin to get all black and charred looking (like a burn victim). The past week he has been in the hospital they are regularly putting some kind of cream on it and his neck has healed up quite a bit. His lips looked completely charred up. Today I saw him and they were actually clean for the first time. I was amazed how well he looked just from that. It gave me, for the first time in a week, some glimmer of hope he'll make it out of there and will be able to finish his treatments.
Sorry for all the ramble. I stumbled on to this page and didn't know where else I could type this up at and hope to get responses from people who may have or are going through the same thing.
At the same time this is happening to my father; my uncle (also a Marine vet) is battling pancreatic cancer. They just did surgery on him last week but I don't know the results.
\ Our family is getting hit hard this year. Comments
-
Treatment can be very difficult
It certainly sounds like your Dad is having a very difficult time at present. It is not uncommon for patients to be hospitalized toward the end of their treatment cycle. It is also not uncommon for chemotherapy patients to run a fever for a few days during treatment. Unfortunately, the combined effect of chemotherapy and radiation is a "one two punch" that hopefully kills the cancer cells, but also kills many good cells in the digestive system as well.
Your Dad sounds like he is getting the kind of treatment needed to stabilize him so his body has a chance to recover. I would not be too concerned about the pain medication, they know how to tapper the dosage slowly so he will not have withdrawal issues when he no longer requires the medication.
I can tell you when I was having chemotherapy there were times when I felt I was not sure who they were trying to kill, me or the cancer.
Several people here have been hospitalized during their chemotherapy and radiation treatments and recovered to complete their treatment plan. However, given your Dad's current state, perhaps it would be better if he completed his last few weeks of chemotherapy and radiation in the hospital where the staff can address his physical issues quickly should they occur again.
I know things look dire now, but I hope your Dad will be feeling better soon and can go on with further treatment and surgery.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!0 -
sorry to meet this way,
Hi, and very glad you found us here. There are lots us us battling the same things that your dad is, and we are all willing and able to help you navigate this disease. I am very sorry to hear about your dad, and all the problems he is having.
The first thing I would like to address is the pain meds. I would say that all of us here are on significant pain meds, and your dad's dose is actually not all that strong considering what some of the rest of us here are on. He should however be on a long acting pain med, such as oxycontin or diluadid, or there is even a patch called fentanyl. These are used for continuous pain relief, and topped up with something short acting, such as morphine or oxycodone for breakthrough pain. Yes, they will give these to your mother to administer at home. And most importantly, be sure that his pain is well managed. Once he falls behind, it is so much harder to catch up. He may need to try several combinations and strengths before he finds what works best for him. My husband, who was stage iv, tried all these drugs mentioned, and more, before finding a mix that worked for him. Morphine is actually the 'weakest' of the pain management drugs that they will give. perhaps while he's in the hospital, the doctors can assess him, and find the best 'cocktail' for him. My husband spent a week in the hospital for just that. They were able to make him totally pain free!! (and not unconscious) Don't be afraid to ask the doctors to do that. You need to advocate for him, and sometimes, push hard for what you think is right.
As for the feeding tube, and hydration, it will help him. Make sure he stays hydrated, that is most important. He may not gain weight with the tube, but it should keep his weight constant. You did not mention if it was a jtube, gtube or gjtube that he got. There is a difference, with the preferred one being the gjtube or jtube, which is a slow feed, but goes directly to the small intestine. These feeds take about 12 hours, which is a lot, but with nausea and vomiting, it is the best type. The gtube is much faster, and easier I would think, but if he vomits he will lose all his nutrition. Please remember, that whatever calories he can take in by mouth is even better.
I have no experience with radiation, but it sounds like he had a pretty rough time of it..... so sorry.
There are a few questions that you may want to answer for us, we are a nosy bunch!!!
first, your name would be great if you want to share that. We are all friends here, and you are welcome to join our 'family'
If you know the names of the chemo drugs he was on, that may help us to help you
Where are you located, and what centre are you at?
I hope you keep in touch,
Chantal0 -
hi
Hi, My mom was also diagnosed about the same time as your father with Stabe 3b Squamous cell and you're right, week 5,6 and one week after chemo took a devasting turn. She went without eating for over 3 weeks. The only thing that saved her in my opinion was the daily fluids. I asked her to get the jtube upfront and she refused. And of course now we're dealing with the aftermath of being malnourished for so long. Her body is really weak and she was on oxycodone (which made her vomit so we reduced the dosage) and it does seem like alot of pain meds but you have her understand and pain is one of the biggest obstacles when getting these radiation treatments. Today is 21 days out from the last radation treatment and my mom stopped going in for fluids, is able to eat but no appetite, off the pain meds, and slowly getting better. I know what you mean about every day being the same. Every morning I run my kids to daycare, take my mom to the cancer clinic, spend the whole day with her massaging her, fixing her ensures and small meals, run my real estate business while she's resting, and then go home at 9pm when my dad comes home. It's been like this for weeks. Hang in there. I know it's hard but when you have a love one that gets this stupid cancer, the norm goes out the window. We have to be there for them, especially our parents. They slaved all their lives to take care of us. We need to take care of them. Please give us updates about your father. I'll pray he gets better to finish out his treatment.
Heeran0 -
This comment has been removed by the ModeratorHeeran said:hi
Hi, My mom was also diagnosed about the same time as your father with Stabe 3b Squamous cell and you're right, week 5,6 and one week after chemo took a devasting turn. She went without eating for over 3 weeks. The only thing that saved her in my opinion was the daily fluids. I asked her to get the jtube upfront and she refused. And of course now we're dealing with the aftermath of being malnourished for so long. Her body is really weak and she was on oxycodone (which made her vomit so we reduced the dosage) and it does seem like alot of pain meds but you have her understand and pain is one of the biggest obstacles when getting these radiation treatments. Today is 21 days out from the last radation treatment and my mom stopped going in for fluids, is able to eat but no appetite, off the pain meds, and slowly getting better. I know what you mean about every day being the same. Every morning I run my kids to daycare, take my mom to the cancer clinic, spend the whole day with her massaging her, fixing her ensures and small meals, run my real estate business while she's resting, and then go home at 9pm when my dad comes home. It's been like this for weeks. Hang in there. I know it's hard but when you have a love one that gets this stupid cancer, the norm goes out the window. We have to be there for them, especially our parents. They slaved all their lives to take care of us. We need to take care of them. Please give us updates about your father. I'll pray he gets better to finish out his treatment.
Heeran0 -
Your dad
As everyone says on this site. WE ARE FAMILY and have been thru so many different aspects of this horrible disease.
Where are you and and is your dad at a big cancer center. You really need to make sure the drs helping him are VERY familiar with EC.This is not like many other cancers and the repurcussions can be severe.
My husband Vince went thru so much with this cancer and became very malnurished. Its so part of EC.
Please let us all know how your dad is doing
Barbara0 -
Just wanted to echo.....
everyone and say - please stay with us. Stay knowing that we HAVE Walked in your shoes. Some here have had great losses, others have had great success. We run the gamut but are more than willing to share our knowledge and experiences to help you and your dad through yours.
As others before me have said - the hospital IS the right place for him right now. He needs the extra care that just isn't possible elsewhere. And Paul's point of completing the treatment while in hospital is a good one. My husband's chemo was done as an in-patient and that was a good experience. I would not have been able to have the variety of nausea meds or sleep aids on hand that were necessary.
Ramble to us any time. We ARE good listeners.
Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11
Clean Path 09/13/110 -
Your dad
Well the good news that your dad is still Stage III and a surgical candidate. Remember, the chemo builds up and sometimes a patient will have a big bump in the road. Know that many have been able to get past this roadblock, get nutrition and hydration, restart and complete the treatment and then have a successful surgery. So keep the faith.
You will be amazed at what a difference getting the proper hydration and feeding will do for a patient, especially an EC patient. Time and time again we will see on the board people who wait too long to get hydration. My dad was one of those, not wanting to go to the hospital over the weekend or thinking it wasn't so bad. So getting hydration and proper nutrition should help him regain his strength.
Good luck and welcome to our family.
Best,
Cindy0 -
HARSH WORLD but welcome
Marinine95,
YOU certainly found the right place to post and you posted very well. Very thorough and I'm so sorry your father is having this happen and you are having go see it all.
We ALL understand and know every word of what you say I haven't read all the other replies, but I imagine they are all similar in saying the horrid "welcome" and that he is going through what many here have.
Are they planning surgery after the chemo and radiation??
I KNOW how horrible it is to see/watch what you are witnessing It is inhumane and unreal to consider it being done in a hospital and on today's medicine. Reminds me of free bleeding and leaches daily. Sorry to be blunt but it does.
I am stage IVb terminal, and 43, father, husband, etc. I chose NO chemo or radiation as you can understand seeing the effects it has on the human body. I took my chances and I am glad for my choices and the way I feel. I am on only pain meds and hospice care, but not dead. I am eating and living and will have a wait and see with my cancer. The poison was just too much at stage IV to think of as any type of "cure". He can/will recover (Like you saw with his lips clearing up and skin improving last time you saw him) and he can survive and have surgery.
Where is he being treated I must know this. Stage IIIb is rough but it IS survivable.
The feeding tube is a Godsend.
As others said, the center he is being treated at and the DOCTOR(s) who will preform the surgery (there is NO cure for EC except resection of the tumors after chemo, usually PRE and POST chemo treatments (called clean-up chemo after the surgery, and it it by FAR the roughest if it is done), and sometimes radiation, too. Sounds like dad got both.
You MUST have a center (Like UPMC and a Dr. like Dr. Luketech) that does hundreds of these a year or more, NEVER a hospital or doctor show has done "some of these surgeries" along with other procedures, we are talking the difference between life and death so this point cannot be stressed enough. The Thoracic surgeon is the 'god' in the world of EC survival.
God bless you for enduring and being such a dedicated caregiver. My wife is mine and I know NO harder job other than MAYBE having than having the cancer itself. Sometimes I think the caregivers have it worse.
Compared to me he is on low dose Morphine so I am am glad he has pain relief, I take MUCH MUCH more than he. I take a BASE dose of 480MG of Oxycontin spread over 4 hour cycles in 80MG doses, and also 30-90 MG of Oxycodone for breakthrough pain, as needed, Neurotin for nerve pain, and some others for other issues that go with the territory, but again, I am palliative only and not seeking a cure. There is none.
Sounds like he may need a lot more for pain as Chantal said. Ask him, talk to him and ADVOCATE for him.. The pain is the least taken care of aspect of this disease to me and can make the person so weak it can cost them their chances, in my opinion. IT is important.
I look forward to hearing more posts from you. You are in the right place, much as I HATE to welcome you here to our family. We are here for each other,
God bless and keep us posted.
Eric0 -
Semper Fi
My mom (84) Stage 3 started chemo and radiation 28 days of both (chemo via pump). Day 4 of the program we literally made a u-turn on the way to get rads and went straight to ER. She remained there 4 or 5 days on IVs. Seems all her chemicals were out of wack. Low sugar, potassium, sodium, electrolytes, etc. Chemo and her regular meds decided to fight each other. She was take off 3 meds. One of the three was replaced with Lisinopril.
The following Monday after being released from hospital chemo and rads restarted. By Tuesday she had a horrible cough. Techs said it's from radiation. I suspected Lisinopril. Eventually lost her voice.
Yesterday we had a check up with the doc who treated her in the hospital. He agreed that the Lisinopril could be the cause. We switched her to Atenolol as a beta block for high BP.
Other than the cough, she is doing very well on her chemo and rads. She has completed round 13. It seems like forever.
Maybe you can have a Kidney/Liver specialist check all dad's chemical balance and see if something is amiss. It's simple blood tests. They need to make sure his regular meds aren't conflicting with chemo. This was just my experience with my mom.
Semper Fi, Marine!0 -
Hi Paul,paul61 said:Treatment can be very difficult
It certainly sounds like your Dad is having a very difficult time at present. It is not uncommon for patients to be hospitalized toward the end of their treatment cycle. It is also not uncommon for chemotherapy patients to run a fever for a few days during treatment. Unfortunately, the combined effect of chemotherapy and radiation is a "one two punch" that hopefully kills the cancer cells, but also kills many good cells in the digestive system as well.
Your Dad sounds like he is getting the kind of treatment needed to stabilize him so his body has a chance to recover. I would not be too concerned about the pain medication, they know how to tapper the dosage slowly so he will not have withdrawal issues when he no longer requires the medication.
I can tell you when I was having chemotherapy there were times when I felt I was not sure who they were trying to kill, me or the cancer.
Several people here have been hospitalized during their chemotherapy and radiation treatments and recovered to complete their treatment plan. However, given your Dad's current state, perhaps it would be better if he completed his last few weeks of chemotherapy and radiation in the hospital where the staff can address his physical issues quickly should they occur again.
I know things look dire now, but I hope your Dad will be feeling better soon and can go on with further treatment and surgery.
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
Two year survivor
Life may not be the party we hoped for, but while we are here we might as well dance!
Thanks for the
Hi Paul,
Thanks for the advice about keeping him in as an in-patient for his last couple weeks of treatment. I took your info and shared it with my father and mother and it's a topic of discussion now that we'll have with the doctors.
I'm very happy to say in the past 48hrs, he's had a significant bounce back. His feeding/fluids are going well. He's gotten some strength back and he can actually talk a few words here and there. Things are looking much better than they were just Wednesday. Apparently the staying in while being treated (i'm told) is at doctor's discretion, but we also need to advocate for him, so if we think that will be best that is certainly what we'll be pushing for. Thanks again for the comments.
Robert0 -
Hi Chantal,Daisylin said:sorry to meet this way,
Hi, and very glad you found us here. There are lots us us battling the same things that your dad is, and we are all willing and able to help you navigate this disease. I am very sorry to hear about your dad, and all the problems he is having.
The first thing I would like to address is the pain meds. I would say that all of us here are on significant pain meds, and your dad's dose is actually not all that strong considering what some of the rest of us here are on. He should however be on a long acting pain med, such as oxycontin or diluadid, or there is even a patch called fentanyl. These are used for continuous pain relief, and topped up with something short acting, such as morphine or oxycodone for breakthrough pain. Yes, they will give these to your mother to administer at home. And most importantly, be sure that his pain is well managed. Once he falls behind, it is so much harder to catch up. He may need to try several combinations and strengths before he finds what works best for him. My husband, who was stage iv, tried all these drugs mentioned, and more, before finding a mix that worked for him. Morphine is actually the 'weakest' of the pain management drugs that they will give. perhaps while he's in the hospital, the doctors can assess him, and find the best 'cocktail' for him. My husband spent a week in the hospital for just that. They were able to make him totally pain free!! (and not unconscious) Don't be afraid to ask the doctors to do that. You need to advocate for him, and sometimes, push hard for what you think is right.
As for the feeding tube, and hydration, it will help him. Make sure he stays hydrated, that is most important. He may not gain weight with the tube, but it should keep his weight constant. You did not mention if it was a jtube, gtube or gjtube that he got. There is a difference, with the preferred one being the gjtube or jtube, which is a slow feed, but goes directly to the small intestine. These feeds take about 12 hours, which is a lot, but with nausea and vomiting, it is the best type. The gtube is much faster, and easier I would think, but if he vomits he will lose all his nutrition. Please remember, that whatever calories he can take in by mouth is even better.
I have no experience with radiation, but it sounds like he had a pretty rough time of it..... so sorry.
There are a few questions that you may want to answer for us, we are a nosy bunch!!!
first, your name would be great if you want to share that. We are all friends here, and you are welcome to join our 'family'
If you know the names of the chemo drugs he was on, that may help us to help you
Where are you located, and what centre are you at?
I hope you keep in touch,
Chantal
Thank you for
Hi Chantal,
Thank you for your feedback. I asked about the tubes since I didn't even know to ask and I'm told he has a gtube. He was having issues (initially) where the feed was just going into his body and just sitting there; then there was an issue with "residual" buildup. But in the past 48 hrs since I posted my initial message on here he's been having an amazing comeback. The feeding & fluids are going well. They did say his phosfate (spelling?) was low and they were still working on that, but they've been able to gradually increase the feeding and that has shown to be working very well so far. His vitals are doing good.
My name is Robert, and my dad's name is Jim. I do not know the names of the chemo drugs he is on but I'll try to find out. We're in Edgewood, KY on the Thomas Moore Campus. He was getting his treatments on the same campus and they also have a medical center/hospital there which is where he's been at now for the past week and a half.
Thanks again for your comments; and also the input on the pain meds.
Robert0 -
Heeran,Heeran said:hi
Hi, My mom was also diagnosed about the same time as your father with Stabe 3b Squamous cell and you're right, week 5,6 and one week after chemo took a devasting turn. She went without eating for over 3 weeks. The only thing that saved her in my opinion was the daily fluids. I asked her to get the jtube upfront and she refused. And of course now we're dealing with the aftermath of being malnourished for so long. Her body is really weak and she was on oxycodone (which made her vomit so we reduced the dosage) and it does seem like alot of pain meds but you have her understand and pain is one of the biggest obstacles when getting these radiation treatments. Today is 21 days out from the last radation treatment and my mom stopped going in for fluids, is able to eat but no appetite, off the pain meds, and slowly getting better. I know what you mean about every day being the same. Every morning I run my kids to daycare, take my mom to the cancer clinic, spend the whole day with her massaging her, fixing her ensures and small meals, run my real estate business while she's resting, and then go home at 9pm when my dad comes home. It's been like this for weeks. Hang in there. I know it's hard but when you have a love one that gets this stupid cancer, the norm goes out the window. We have to be there for them, especially our parents. They slaved all their lives to take care of us. We need to take care of them. Please give us updates about your father. I'll pray he gets better to finish out his treatment.
Heeran
I'm hanging in
Heeran,
I'm hanging in there! My father has actually had some improvements in the past 48hrs so things 'look' like they are turning around a bit; although he still has a couple weeks of radiation/chemo to get through and then of course we have to wait and see just how effective that all was. I'm doing all that I can to be with him and take care of him. Appreciate the prayers, thanks!
Robert0 -
Sherri,unknown said:This comment has been removed by the Moderator
I didn't realize
Sherri,
I didn't realize that chemo could also cause the fevers that he was having. They did blood cultures, made him pee in a cup and took a chest x-ray and I don't think they ever found anything out of wack so apparently it was his treatments that caused it. His temp has been good the past couple of days now. Yesterday AM it was 97.8 I think. Thanks for the feedback!
Robert0 -
Barbara,mrsbotch said:Your dad
As everyone says on this site. WE ARE FAMILY and have been thru so many different aspects of this horrible disease.
Where are you and and is your dad at a big cancer center. You really need to make sure the drs helping him are VERY familiar with EC.This is not like many other cancers and the repurcussions can be severe.
My husband Vince went thru so much with this cancer and became very malnurished. Its so part of EC.
Please let us all know how your dad is doing
Barbara
We're in northern
Barbara,
We're in northern KY. He's been doing his treatments on the Thomas Moore Campus at the cancer treatment center they have there. He's been an in-patient at the medical center/hospital on campus the past week and a half now.
In the past 48hrs since I posted my initial message, he's made a lot of progress physically and I'm sure emotionally as well. He seems to be making a comeback. Thanks for your feedback!
Robert0 -
Terry,TerryV said:Just wanted to echo.....
everyone and say - please stay with us. Stay knowing that we HAVE Walked in your shoes. Some here have had great losses, others have had great success. We run the gamut but are more than willing to share our knowledge and experiences to help you and your dad through yours.
As others before me have said - the hospital IS the right place for him right now. He needs the extra care that just isn't possible elsewhere. And Paul's point of completing the treatment while in hospital is a good one. My husband's chemo was done as an in-patient and that was a good experience. I would not have been able to have the variety of nausea meds or sleep aids on hand that were necessary.
Ramble to us any time. We ARE good listeners.
Terry
Wife to Nick, age 48
dx T3N1M0 05/19/11
THE 09/08/11
Clean Path 09/13/11
Thanks for your
Terry,
Thanks for your comments. I'm glad to have found this site and so quickly get so many comments and useful feedback from others who have and are going through the same thing my family is now experiencing. My father is doing much better. He's still there and probably will be for at least much of this week, if not into next week but I'm fine with that obviously. I just want him to get well, get back into treatment, and beat this. I'm grateful for every moment I have with him.
Robert0 -
Cindy,unclaw2002 said:Your dad
Well the good news that your dad is still Stage III and a surgical candidate. Remember, the chemo builds up and sometimes a patient will have a big bump in the road. Know that many have been able to get past this roadblock, get nutrition and hydration, restart and complete the treatment and then have a successful surgery. So keep the faith.
You will be amazed at what a difference getting the proper hydration and feeding will do for a patient, especially an EC patient. Time and time again we will see on the board people who wait too long to get hydration. My dad was one of those, not wanting to go to the hospital over the weekend or thinking it wasn't so bad. So getting hydration and proper nutrition should help him regain his strength.
Good luck and welcome to our family.
Best,
Cindy
I don't know anything
Cindy,
I don't know anything about a surgical option but thanks for the heads up. I also got an uncle battling pancreatic cancer and I know they operated on him about a week ago and took all sorts of things out of him. Now they're prepping him for chemo.
My dad, on the other hand, I've not heard any chat about surgery on him (at least not yet). He has 9 days of radiation and a week of chemo they still plan to put him through soon as the doctors thinks he's ready to get back at it.
You're right - the hydration and feeding have made a tremendous difference. We've seen big improvements with him just in the past couple of days. It's really helped him regain his strength and focus back and we hope to see that progress continue.
Robert0 -
Eric,chemosmoker said:HARSH WORLD but welcome
Marinine95,
YOU certainly found the right place to post and you posted very well. Very thorough and I'm so sorry your father is having this happen and you are having go see it all.
We ALL understand and know every word of what you say I haven't read all the other replies, but I imagine they are all similar in saying the horrid "welcome" and that he is going through what many here have.
Are they planning surgery after the chemo and radiation??
I KNOW how horrible it is to see/watch what you are witnessing It is inhumane and unreal to consider it being done in a hospital and on today's medicine. Reminds me of free bleeding and leaches daily. Sorry to be blunt but it does.
I am stage IVb terminal, and 43, father, husband, etc. I chose NO chemo or radiation as you can understand seeing the effects it has on the human body. I took my chances and I am glad for my choices and the way I feel. I am on only pain meds and hospice care, but not dead. I am eating and living and will have a wait and see with my cancer. The poison was just too much at stage IV to think of as any type of "cure". He can/will recover (Like you saw with his lips clearing up and skin improving last time you saw him) and he can survive and have surgery.
Where is he being treated I must know this. Stage IIIb is rough but it IS survivable.
The feeding tube is a Godsend.
As others said, the center he is being treated at and the DOCTOR(s) who will preform the surgery (there is NO cure for EC except resection of the tumors after chemo, usually PRE and POST chemo treatments (called clean-up chemo after the surgery, and it it by FAR the roughest if it is done), and sometimes radiation, too. Sounds like dad got both.
You MUST have a center (Like UPMC and a Dr. like Dr. Luketech) that does hundreds of these a year or more, NEVER a hospital or doctor show has done "some of these surgeries" along with other procedures, we are talking the difference between life and death so this point cannot be stressed enough. The Thoracic surgeon is the 'god' in the world of EC survival.
God bless you for enduring and being such a dedicated caregiver. My wife is mine and I know NO harder job other than MAYBE having than having the cancer itself. Sometimes I think the caregivers have it worse.
Compared to me he is on low dose Morphine so I am am glad he has pain relief, I take MUCH MUCH more than he. I take a BASE dose of 480MG of Oxycontin spread over 4 hour cycles in 80MG doses, and also 30-90 MG of Oxycodone for breakthrough pain, as needed, Neurotin for nerve pain, and some others for other issues that go with the territory, but again, I am palliative only and not seeking a cure. There is none.
Sounds like he may need a lot more for pain as Chantal said. Ask him, talk to him and ADVOCATE for him.. The pain is the least taken care of aspect of this disease to me and can make the person so weak it can cost them their chances, in my opinion. IT is important.
I look forward to hearing more posts from you. You are in the right place, much as I HATE to welcome you here to our family. We are here for each other,
God bless and keep us posted.
Eric
We're in northern KY
Eric,
We're in northern KY at the Thomas Moore campus. He was getting his cancer treatments at the treatment center there, and they also have a medical center/hospital which is where he has been now for the past week. Initially the feeding tube wasn't working out very good but just in the past couple days we've seen an amazing difference. Things seem to be working well. He's really made a comeback. My father has a high tolerance for pain, always had all his life, and so that is a concern for us that he's not pushing himself to the limits trying to 'suck it up' more than any person should have to do. He is a trooper though and throughout all this has managed to keep his sense of humor. It has been horrible to watch what this has done to my father, but I realize this happens all over the world every day to families. It happened to my grandfather (his dad) a decade ago, and now it's back again happening to him. I do all that I can to be there for him and cherish every moment I have with him. I've not been informed of any planned surgeries but I'll certainly inquire about that. Someone else on the board brought that similar comment up. That's another reason I'm grateful for have found this site, because I feel like a boot all over again not knowing my left from my right. I sincerely appreciate all the comments and suggestions that all of you have shared.
Robert0 -
Thanks for the Semper FiGinny_B said:Semper Fi
My mom (84) Stage 3 started chemo and radiation 28 days of both (chemo via pump). Day 4 of the program we literally made a u-turn on the way to get rads and went straight to ER. She remained there 4 or 5 days on IVs. Seems all her chemicals were out of wack. Low sugar, potassium, sodium, electrolytes, etc. Chemo and her regular meds decided to fight each other. She was take off 3 meds. One of the three was replaced with Lisinopril.
The following Monday after being released from hospital chemo and rads restarted. By Tuesday she had a horrible cough. Techs said it's from radiation. I suspected Lisinopril. Eventually lost her voice.
Yesterday we had a check up with the doc who treated her in the hospital. He agreed that the Lisinopril could be the cause. We switched her to Atenolol as a beta block for high BP.
Other than the cough, she is doing very well on her chemo and rads. She has completed round 13. It seems like forever.
Maybe you can have a Kidney/Liver specialist check all dad's chemical balance and see if something is amiss. It's simple blood tests. They need to make sure his regular meds aren't conflicting with chemo. This was just my experience with my mom.
Semper Fi, Marine!
Thanks for the Semper Fi That's been the motto of our beloved Corps since 1883 - Always Faithful. That's how I feel about my father, and I'm always there for him. He's having a bit of a comeback the past couple of days, so now its just a matter of when the doc's think he's going to be in a position to return and complete his treaments and whether they'll keep him as an in-patient for that or release him. Personally, I wouldn't mind them keeping him as an in-patient. That way there will be caregivers around him 24/7 to make sure things don't spiral out of control again. Thank you for sharing your feedback with the experience your mother went through. I'll keep that kidney/liver specialist in mind.
Robert0 -
SO Serious Robert!Marine95 said:Thanks for the Semper Fi
Thanks for the Semper Fi That's been the motto of our beloved Corps since 1883 - Always Faithful. That's how I feel about my father, and I'm always there for him. He's having a bit of a comeback the past couple of days, so now its just a matter of when the doc's think he's going to be in a position to return and complete his treaments and whether they'll keep him as an in-patient for that or release him. Personally, I wouldn't mind them keeping him as an in-patient. That way there will be caregivers around him 24/7 to make sure things don't spiral out of control again. Thank you for sharing your feedback with the experience your mother went through. I'll keep that kidney/liver specialist in mind.
Robert
Robert,
SO great to hear that your dad has had a turn for the better and he is doing so much more than before and you get to witness this and see the changes aren't they great??
I will keep this as simple as possible;
YOU are going to have to get dad to a "MAJOR" cancer treatment center and as you noticed in others posts, the doctor who MUST perform this surgery must be an EXPERT in EVERY SINGLE SINCE OF THE WORD EXPERT EXPERT EXPERT.
I am a broken record but there is NO CURE, re-read that Robert, this is your Dad, there is NO CURE for EC EXCEPT surgery to remove the tumor(s) usually after chemotherapy and some radiation and then more cleanup to catch any free cancer cells that may be swimming inside of dad after the surgery. Chemo alone GUARANTEES a return of the disease at some point in the near future.
DO NOT FEEL LIKE A BOOT!! You are with us and ever single one of us walked in to this knowing NOTHING and walked away experts who had to be the advocate and fight for our dad's (wife's sisters, whomever) and fight to get them the treatment they have to have to be here with us next week or next year. That's all.
It IS this simple. Period.
Ask ANY and MANY questions please!
God bless you, thank you for your service to our country and Semper Fi.
Eric0 -
surgical intervention for ECMarine95 said:Eric,
We're in northern KY
Eric,
We're in northern KY at the Thomas Moore campus. He was getting his cancer treatments at the treatment center there, and they also have a medical center/hospital which is where he has been now for the past week. Initially the feeding tube wasn't working out very good but just in the past couple days we've seen an amazing difference. Things seem to be working well. He's really made a comeback. My father has a high tolerance for pain, always had all his life, and so that is a concern for us that he's not pushing himself to the limits trying to 'suck it up' more than any person should have to do. He is a trooper though and throughout all this has managed to keep his sense of humor. It has been horrible to watch what this has done to my father, but I realize this happens all over the world every day to families. It happened to my grandfather (his dad) a decade ago, and now it's back again happening to him. I do all that I can to be there for him and cherish every moment I have with him. I've not been informed of any planned surgeries but I'll certainly inquire about that. Someone else on the board brought that similar comment up. That's another reason I'm grateful for have found this site, because I feel like a boot all over again not knowing my left from my right. I sincerely appreciate all the comments and suggestions that all of you have shared.
Robert
I agree with Eric. We were told that the only "cure: for ec was surgery. My husband was diagnosed in April 2011, started chemo and radiation (I can relate to what you are going thru with your dad. Chemo is HORRIBLE. My husband lost 15 punds the first two weeks. he also had to take a break from it, he just couldn"t do it.) MIE (minimally invasive esophagectomy) done on August 31 at BArnes Jewish Hospital St. Louis by Dr. Brian Meyers. My husband is now doing very well. His feeding tube came out on Thursday November 17. He has had much better intake orally since then. We are beginning to believe we will survive this. Know what you mean about bad years too. If it could go wrongthis year it has.
Susan0
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