Father Diagnosed last Friday
In order to understand my journey, I have to share that my father has been a life long alcoholic. I watched him nearly wither away and die from alcoholism nearly a year ago until I took him to the hospital for help. From there, he was admitted into a nursing home and underwent rehabilitation for over 6 months. I stood by him throughout, overseeing his care as he knocked on deaths door. He was over medicated on Ativan and delusional. I was told he had hepatic encephalopathy and that he may never regain his mind back. One night I had him taken from the Nursing home to the ER when I thought his health had seriously taken a turn for the worse. He was in pain, delirious from the medications, and was under 100 lbs. The ER doctor (our saving grace) put in orders to have him removed completely off of the detox medication, Ativan. It took about a week or two, and he regained his mind and I was overjoyed to have him back when I thought I had lost him for good. He put on weight up to 130 lbs before finally getting released to go home. He has been living with my Aunt, enjoying life for the first time in decades with a clear mind and finding purpose in life again.
I thought the worst was over and that I would be able to enjoy my father in his clean and clear state for at least another 5 years or more. It has been such a joy to see him sober and happy. We have come so far this past year to have it all taken away in such a short time. When he was weighed at his appointment for the biopsy results, I was shocked to learn he only weighs 102lbs! He has a lot of congestion in his throat and chest. When he was staying in the nursing home, he had pneumonia at one point and I know they did more than one chest x-ray for his frequent congestion and coughing. Does this mean there isn't a detectable tumor and the cancer is contained in the lining of the esophagus? He also says his vision doesn't seem well when he puts his head down and raises his head back up. I fear the worst for him. I can't wrap my head around loosing my father after finally getting him back. He is an amazing person outside of the alcoholism. He has such big heart and the BEST sense of humor. The funniest man I know.
We see the oncologist on Wednesday. I am trying to gain my strength to be a better support system for him then. It will be very difficult. I just wanted to share my story and I hope to learn from the experiences of others on here as well. I am open to hearing more about what to expect from the oncologist on Wednesday. Thank you for reading and for any support offered.
Jennifer
Comments
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So sorry to find you hereGinny_B said:I recently found this site
I recently found this site when my 84 y/o mo was diagnosed. Hopefully you will find strength and courage as you begin this road.
None of us wants to be in a position to find this site, but thank the good lord it is here. Until all the test are complete and you have a staging, it is impossible to know exactly what you are up against. I am a stage iv and am being treated as palative care only. I have had chemo/radiation and continue to have chemo regularly. I was dx in April of 2010. This is a hard road and you will have to pull from the deepest parts of your soul to be there for your dad. I would say he is extremely lucky to have a daughter to stand with him through the past year and know that you will stand with him as he walks the path layed before him with EC. We are all here for you and for each other. I will add you and your dad to my daily prayer list. Keep us posted and never hesitate to post your feelings. Sam0 -
long row to hoe
Meeting the oncologist will be the beginning. Take notes and ask any questions that you come up with between now and wednesday. The oncologist will give you some options and a plan of attack. You have proven yourself to be a supportive caregiver to your dad in the recent past and you will be able to handle this. He is living with your aunt and so that is a stable situation too.0 -
Sam thank you for your wordssangora said:So sorry to find you here
None of us wants to be in a position to find this site, but thank the good lord it is here. Until all the test are complete and you have a staging, it is impossible to know exactly what you are up against. I am a stage iv and am being treated as palative care only. I have had chemo/radiation and continue to have chemo regularly. I was dx in April of 2010. This is a hard road and you will have to pull from the deepest parts of your soul to be there for your dad. I would say he is extremely lucky to have a daughter to stand with him through the past year and know that you will stand with him as he walks the path layed before him with EC. We are all here for you and for each other. I will add you and your dad to my daily prayer list. Keep us posted and never hesitate to post your feelings. Sam
Sam thank you for your words of support. You are a good soul to find strength to support others as you go through this too. I will make sure to report back once we know more. Thank you for your thoughts and prayers.0 -
Jim I will be sure to takejim2011 said:long row to hoe
Meeting the oncologist will be the beginning. Take notes and ask any questions that you come up with between now and wednesday. The oncologist will give you some options and a plan of attack. You have proven yourself to be a supportive caregiver to your dad in the recent past and you will be able to handle this. He is living with your aunt and so that is a stable situation too.
Jim I will be sure to take notes. I will be searching this site to help me figure out the right questions to ask. And yes,he does have a great relationship with his sister and for that I am grateful.
I figure the more I talk about this beforehand with others, the better I will be able to face the reality of it all come Wednesday. I don't want to have a complete meltdown at the oncologist. I am trying to prepare myself for the worst but hoping for the best. Thank you for your encouragement.0 -
Caregiver notesJenny32 said:Jim I will be sure to take
Jim I will be sure to take notes. I will be searching this site to help me figure out the right questions to ask. And yes,he does have a great relationship with his sister and for that I am grateful.
I figure the more I talk about this beforehand with others, the better I will be able to face the reality of it all come Wednesday. I don't want to have a complete meltdown at the oncologist. I am trying to prepare myself for the worst but hoping for the best. Thank you for your encouragement.
Hi Jenny,
First know that we are all walking this walk with you! You are not alone in these halls. There are many here and as you will see we are all a very close and supportive group.
That said, there are some questions you need to be aware of going into this appointment with your dad. More information is needed to know which direction your treatment plan will go and here are some of the things you will need to ask. Staging is of utmost importance with EC. The staging can help you know what treatment options are available and if cure is an option in his case or if you will be facing palliative care alone. If they haven't done an endoscopic ultrasound yet, that would be the next step, though you said 'biopsy results', so I am thinking the ultrasound has already taken place?
A CT scan to look at the entire abdominal area would be necessary to see the exact location of the tumor(s). Then a PET scan should be performed to find out if there is any heightened levels of metabolic activity can be seen elsewhere in the body. This increased level of activity could mean cancer cells elsewhere (metastasis). And where there is other lymph nodes involved (which some can also be seen through CT).
The oncologist could be able to tell you whether it is operable or not but really a Thoracic Surgeon has the final word on that topic. They can perform some amazing procedures these days that were not available years ago, so there has been progress in fighting this terrible cancer. But still EC is only curable through surgically removing the cancer. So your first real milestone will have been reached when you can find out whether or not it is or is not operable.
I am sure others will chime in here and if not on this thread, start a new one to bring new attention to the topic, but I know that there are a couple of different surgical methodologies and differing opinions on which has a better success rate. This is information I will leave to others to inform you about. My husband is inoperable and terminal, so we were not fortunate enough to get to the part of investigating the best surgical methods, though he knows some of them now through this board.
There are several other details that will play a role in determining which chemo/rad plan would best suite your father and those are knowing the type of carcinoma (adenocarcinoma, squamous cell carcinoma, ect.) My husband has adenocarcinoma and is HER2 Neutral. HER2/Positive or HER2/Neu = Human Epidermal growth factor Receptor 2 is a genome receptor type that is a protein that binds to the cells of cancer and makes the multiplying effect of the cells much more aggressive. You will need to know whether he is Positve for HER2 or Nuetral/Negative. This will determine which Chemo will be given. They have a better response with chemo for HER2/Positive called Herceptin. But I have probably gone way over your head for now.
This is some starter information that you will want to know and when you can get these answers from the oncologist, please post back and we can help more from there. Please also look through some of the past posts as they are chalked full of great information.
I hope I have been of some help in your questions. Know that we are all pulling for you here and prayers are being said for you and your father!
Regards,
Michelle0 -
Thank you Ginny... it isGinny_B said:I recently found this site
I recently found this site when my 84 y/o mo was diagnosed. Hopefully you will find strength and courage as you begin this road.
Thank you Ginny... it is nice to find a place where people can relate and share their journey.
I will be following your story as you seem to be a step ahead of me here with your mother. My father has lost a significant amount of weight and isn't taking anything as of yet for pain. The Doctors must have suspected cancer when he had the endoscopy since they advised him against the use of ibuprofen. He seems to feel pretty well overall though, so he says. Mainly he seems to be in discomfort because of the coughing that is causing his lungs to feel sore. I am worried that is where they will tell us it has spread. I am trying not to jump to conclusions prior to Wednesday but my mind is spinning. My main concern is that he gets nutrition in him. I wish I could fast forward to Wednesday and just know what is going on.0 -
Jennifer, the days ahead
Jennifer, the days ahead will be a rollercoaster ride, I'm so glad your dad has had the past months so that the two of you could get better acquainted without the effects of alcohol.
I read some of the other posts and there isn't anymore I can add to the advice. The main thing at this point is to finish the testing, to know staging and what lies ahead.
There are some suvivors that have finished treatment, that are now cancer free, so all is not all glum. The treatment was rough, but I am three years cancer free.
I will be praying for good test results. We're all here for you, Sandra0 -
Michelle I cannot thank youLilChemoSmoker said:Caregiver notes
Hi Jenny,
First know that we are all walking this walk with you! You are not alone in these halls. There are many here and as you will see we are all a very close and supportive group.
That said, there are some questions you need to be aware of going into this appointment with your dad. More information is needed to know which direction your treatment plan will go and here are some of the things you will need to ask. Staging is of utmost importance with EC. The staging can help you know what treatment options are available and if cure is an option in his case or if you will be facing palliative care alone. If they haven't done an endoscopic ultrasound yet, that would be the next step, though you said 'biopsy results', so I am thinking the ultrasound has already taken place?
A CT scan to look at the entire abdominal area would be necessary to see the exact location of the tumor(s). Then a PET scan should be performed to find out if there is any heightened levels of metabolic activity can be seen elsewhere in the body. This increased level of activity could mean cancer cells elsewhere (metastasis). And where there is other lymph nodes involved (which some can also be seen through CT).
The oncologist could be able to tell you whether it is operable or not but really a Thoracic Surgeon has the final word on that topic. They can perform some amazing procedures these days that were not available years ago, so there has been progress in fighting this terrible cancer. But still EC is only curable through surgically removing the cancer. So your first real milestone will have been reached when you can find out whether or not it is or is not operable.
I am sure others will chime in here and if not on this thread, start a new one to bring new attention to the topic, but I know that there are a couple of different surgical methodologies and differing opinions on which has a better success rate. This is information I will leave to others to inform you about. My husband is inoperable and terminal, so we were not fortunate enough to get to the part of investigating the best surgical methods, though he knows some of them now through this board.
There are several other details that will play a role in determining which chemo/rad plan would best suite your father and those are knowing the type of carcinoma (adenocarcinoma, squamous cell carcinoma, ect.) My husband has adenocarcinoma and is HER2 Neutral. HER2/Positive or HER2/Neu = Human Epidermal growth factor Receptor 2 is a genome receptor type that is a protein that binds to the cells of cancer and makes the multiplying effect of the cells much more aggressive. You will need to know whether he is Positve for HER2 or Nuetral/Negative. This will determine which Chemo will be given. They have a better response with chemo for HER2/Positive called Herceptin. But I have probably gone way over your head for now.
This is some starter information that you will want to know and when you can get these answers from the oncologist, please post back and we can help more from there. Please also look through some of the past posts as they are chalked full of great information.
I hope I have been of some help in your questions. Know that we are all pulling for you here and prayers are being said for you and your father!
Regards,
Michelle
Michelle I cannot thank you enough for taking the time to respond as you did. I just typed up a nice response to yours and for some reason it didn't post...so here I go again..I have been reading through the posts and I love when you said that we are all terminal in time. It is true, everyone's ultimate destination is the same in life. We just don't all get to know the when and how we get there as some do.
I spoke with my dad today to try and put the pieces to the puzzle together and find out who he has seen and what he has had done so far. Unfortunately, I missed his first couple of appointments but I am grateful that I was there for the diagnosis. He did say that he did a some sort of swallow test with a dissolvable pill (which got lodged as it went down), then the endoscopy, biopsy, and body scan. The Gastroenterologist who provided the diagnosis didn't give me any further details other than "it's cancer". In fact, I had to ask right as we were leaving what the actual name of the cancer is and he seemed reluctant to tell me. He was afraid that I was going to go Google happy, which naturally I did. So it is Adenocarcinoma. I am sure the Doctor knew more than he was willing to tell us but is leaving the rest up to the oncologist.
I have talked to my dad each day since Friday and he is in high spirits and assures me he is feeling well and not in pain. His sense of humor is intact as always and that is what is going to pull us through this. I told him I will have my game face on for Wednesday. I now know to ask about the CT and PET scans, as well as the receptor type.
Thank you again for you insight. I know your path to acquiring this knowledge hasn't been easy. I am sure your husband is comforted by your compassion and in knowing you can help others like myself. And I will pay it forward as I also go through this journey.0 -
Sandra it has been such asandy1943 said:Jennifer, the days ahead
Jennifer, the days ahead will be a rollercoaster ride, I'm so glad your dad has had the past months so that the two of you could get better acquainted without the effects of alcohol.
I read some of the other posts and there isn't anymore I can add to the advice. The main thing at this point is to finish the testing, to know staging and what lies ahead.
There are some suvivors that have finished treatment, that are now cancer free, so all is not all glum. The treatment was rough, but I am three years cancer free.
I will be praying for good test results. We're all here for you, Sandra
Sandra it has been such a dream come true to have my dad unencumbered from alcohol and see the new life in his eyes. I don't want to ever loose that. I have pushed for his health for so long and just when I thought we finally made it, we reach another hurdle. It is better that this diagnosis came, however, with him in a clear state of mind because he is better equipped to face this. He has a new outlook on life after the struggle he went through rehabilitating in a nursing home. Death was all around him and he was able to walk out of there and face life head on again. He is very lucky to have made it through, and now we realize that the fight for his life is not over. Thank you for the hope and prayers. It truly means a lot! Very happy to hear that your treatment was a success and you are a survivor : )0 -
reposted sorrysandy1943 said:Jennifer, the days ahead
Jennifer, the days ahead will be a rollercoaster ride, I'm so glad your dad has had the past months so that the two of you could get better acquainted without the effects of alcohol.
I read some of the other posts and there isn't anymore I can add to the advice. The main thing at this point is to finish the testing, to know staging and what lies ahead.
There are some suvivors that have finished treatment, that are now cancer free, so all is not all glum. The treatment was rough, but I am three years cancer free.
I will be praying for good test results. We're all here for you, Sandra0 -
Okay so we know a bit more...Jenny32 said:Michelle I cannot thank you
Michelle I cannot thank you enough for taking the time to respond as you did. I just typed up a nice response to yours and for some reason it didn't post...so here I go again..I have been reading through the posts and I love when you said that we are all terminal in time. It is true, everyone's ultimate destination is the same in life. We just don't all get to know the when and how we get there as some do.
I spoke with my dad today to try and put the pieces to the puzzle together and find out who he has seen and what he has had done so far. Unfortunately, I missed his first couple of appointments but I am grateful that I was there for the diagnosis. He did say that he did a some sort of swallow test with a dissolvable pill (which got lodged as it went down), then the endoscopy, biopsy, and body scan. The Gastroenterologist who provided the diagnosis didn't give me any further details other than "it's cancer". In fact, I had to ask right as we were leaving what the actual name of the cancer is and he seemed reluctant to tell me. He was afraid that I was going to go Google happy, which naturally I did. So it is Adenocarcinoma. I am sure the Doctor knew more than he was willing to tell us but is leaving the rest up to the oncologist.
I have talked to my dad each day since Friday and he is in high spirits and assures me he is feeling well and not in pain. His sense of humor is intact as always and that is what is going to pull us through this. I told him I will have my game face on for Wednesday. I now know to ask about the CT and PET scans, as well as the receptor type.
Thank you again for you insight. I know your path to acquiring this knowledge hasn't been easy. I am sure your husband is comforted by your compassion and in knowing you can help others like myself. And I will pay it forward as I also go through this journey.
Jenny,
Don't sweat it, that is what we are here for! Yes, I had to go through a lot of 'stuff' with my husband to get here and I only recently started posting on the board. My husband has been here since shortly after his dx (July, 17th, 2011). I lurked for months before coming out...LOL.
O'kay, so to the nitty gritty for this post. You know it is an adenocarcinoma, which means it is probably located near the dystal junction? Most Adenocarcinomas originate near the junction between the stomach and esophagus (in the lower 3rd of the esophagus). If this is the case, then is it likely that your father's cancer is of the newer type of esophageal cancers (originated from a Barrett's Esophagus which is brought on by acid reflux damage) that have increased in numbers among white males in the states in the last 20 years. You can find good info on that here: http://www.mayoclinic.com/health/barretts-esophagus/HQ00312
When you see the oncologist on Wednesday make sure to ask whether or not they plan to include a CT of the brain to rule out mets to the brain, (since he is experiencing issues when moving his head in such a way). Doesn't mean that there are mets to the brain, but better to know now than later and if your oncologist is anything like ours was, that won't be an automatic response by them.
Our PET scan did all areas of the body so we knew through the PET scan there was no other organs involved. You will need to understand the PET scan to understand how to read the results. You can learn about the PET here: http://en.wikipedia.org/wiki/Positron_emission_tomography
Your oncologist will likely not want to give you staging info until all the tests have been completely, so know this going in on Wednesday. Do much research on the thorasic surgeon that your oncologist uses. Get their name and possible website.
Look up user name WilliamWMarshall and go to his profile and read it. He has a lot of good information there and the most incredible survivor I know on this board. You might want to specifically look at some of his past posts. He post the most incredible informational posts of all here. The link to his profile is here: http://csn.cancer.org/user/22111
Now for the reading part. Go do your reading I have posted here and the reading on Williams pages. There is a lot to learn. It can be very overwhelming, but take a deep breath and exhale. Remember, this disease didn't occur overnight and it will take time to get all the information necessary to accurately know the direction of your father's treatment plan. We are all here for you and will continue to answer all your questions that we can.
Hope this helps!
Michelle
P.S. If your father is having trouble swallowing solids, please get a food processor and start softening his food and have him drink ensures or boosts for a high caloric intake. This will help him gain strength and stamina. Also, keep him hydrated with fluids as much as he can tolerate. I am sure you have probably been told this before, but just making sure you know. My husband snacks on multigrain cheerios all day long to keep up his fiber intake and iron intake and it is an excellent way to 'exercise' the esophagus (for him). May not work for your dad, but thought I would share our experience.0 -
Jennifer,
Welcome to our discussion board. It is so disheartening to have to welcome another person to this site because it means that yet another person has been struck with this terrible disease, but know that you have found a great place for information, compassion and caring. We are all in one way or another involved with this disease and we "get" you feelings, concerns and frustrations. Never hesitate to ask question here, as we will answer as best we can. We are not doctors, but have lived with this diagnosis and know things about the day to day living with it that others may not know or understand. We do not try to sugar coat anything, just give honest answers from our experiences, and share in your good days and bad. My husband, Rickie, was diagnosed with stage IV EC last October and is currently undergoing chemo treatment. You can read about our journey by clicking on my name on the left hand side of my post.
You did not mention where your father is being treated. If at all possible please see that he gets to a cancer treatment center that specializes in esophageal cancer. This cancer is fairly rare and many small town doctors have never treated anyone with it. We live in the very southern tip of Texas and while our doctors are good they just have not had the experience with it. Also a second opinion is always the way to go.
You mentioned that your father was losing weight. Since Rickie's symptoms first really started in the spring of 2010 until now he has lost over 140 pounds. He was a big guy to start with, which may have been a good thing, as he had weight he was able to loose without too much effect. Now it is a struggle to keep it on. If your father is having difficulty swallowing solids, you might want to get him to drink Ensure plus if he not already doing so. Also we made shakes out of whey protien. My husband is not a big fruit eater, so smoothies did not appeal to him at all. The nutritionist we saw suggested Jay Robb brand of whey protien because she said it actually tasted good and came in many flavors. I would mix up the chocolate kindwith a cup of whole milk and add a tablespoon of peanut butter, chocolate syrup, ice cream and a few ice cubes. I tried to add calories any way I could and sometimes would also add powdered milk to it as well. He actually would drink this. For a while it became his mainstay. Once he started on a chemo that worked the tumor shrank and he was able to get some solid foods down. But we occasionally resort to this old standby. He also had a feeding tube placed in June of this year, so when eating becomes a problem, he hooks up to the tube and gets some nutrition that way. A feeding tube is something you should discuss with your Dad's doctor if he is losing weight.
I hoped this has helped you somewhat. I understand the devastation you must feel. We have three children ranging in age from 33 to 23 and each is trying in their own way to cope with this diagnosis, as am I. please feel free to ask question. We here will all help as best we can.
Cheryl
Wife of Rickie, dx stage IV EC, October 2010
PS. When you post be sure to copy you text before hitting the post button, that way when it disappears into cyberspace, you still have a copy.
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Welcome JennyJenny32 said:reposted sorry
Your dad is really lucky to have a strong advocate in his corner. Michele is absolutely right. Do your research and ask the questions. I refer to this cancer as the ugly beast because it really is just that. There are lots of survival stories out there though so try to keep a positive attitude. I was just on an online chat tonight on another site with 5 -8 and 13 yr survivors. The people on this site are amazing and will give you lots of hope and advice. I will definately pray for your dad as you move forward.
Rita0 -
Thank you again for thisLilChemoSmoker said:Okay so we know a bit more...
Jenny,
Don't sweat it, that is what we are here for! Yes, I had to go through a lot of 'stuff' with my husband to get here and I only recently started posting on the board. My husband has been here since shortly after his dx (July, 17th, 2011). I lurked for months before coming out...LOL.
O'kay, so to the nitty gritty for this post. You know it is an adenocarcinoma, which means it is probably located near the dystal junction? Most Adenocarcinomas originate near the junction between the stomach and esophagus (in the lower 3rd of the esophagus). If this is the case, then is it likely that your father's cancer is of the newer type of esophageal cancers (originated from a Barrett's Esophagus which is brought on by acid reflux damage) that have increased in numbers among white males in the states in the last 20 years. You can find good info on that here: http://www.mayoclinic.com/health/barretts-esophagus/HQ00312
When you see the oncologist on Wednesday make sure to ask whether or not they plan to include a CT of the brain to rule out mets to the brain, (since he is experiencing issues when moving his head in such a way). Doesn't mean that there are mets to the brain, but better to know now than later and if your oncologist is anything like ours was, that won't be an automatic response by them.
Our PET scan did all areas of the body so we knew through the PET scan there was no other organs involved. You will need to understand the PET scan to understand how to read the results. You can learn about the PET here: http://en.wikipedia.org/wiki/Positron_emission_tomography
Your oncologist will likely not want to give you staging info until all the tests have been completely, so know this going in on Wednesday. Do much research on the thorasic surgeon that your oncologist uses. Get their name and possible website.
Look up user name WilliamWMarshall and go to his profile and read it. He has a lot of good information there and the most incredible survivor I know on this board. You might want to specifically look at some of his past posts. He post the most incredible informational posts of all here. The link to his profile is here: http://csn.cancer.org/user/22111
Now for the reading part. Go do your reading I have posted here and the reading on Williams pages. There is a lot to learn. It can be very overwhelming, but take a deep breath and exhale. Remember, this disease didn't occur overnight and it will take time to get all the information necessary to accurately know the direction of your father's treatment plan. We are all here for you and will continue to answer all your questions that we can.
Hope this helps!
Michelle
P.S. If your father is having trouble swallowing solids, please get a food processor and start softening his food and have him drink ensures or boosts for a high caloric intake. This will help him gain strength and stamina. Also, keep him hydrated with fluids as much as he can tolerate. I am sure you have probably been told this before, but just making sure you know. My husband snacks on multigrain cheerios all day long to keep up his fiber intake and iron intake and it is an excellent way to 'exercise' the esophagus (for him). May not work for your dad, but thought I would share our experience.
Thank you again for this helpful information. He has a supply of ensure drinks that I have been encouraging him to drink more of. He is eating soups, pastas, and potatoes but unfortunately I am not there to monitor his calorie intake. I know he needs to step it up though. I will make sure to mention his issues with feeling light headed to the doctor because that was also a concern of mine. I will also make sure that he is cared for by experienced doctors in this field. I realize now that his primary care physician missed a lot of the signs and symptoms that we expressed over this past year. It baffles me why this was missed for so long when he was under constant care of nurses and physicians for over 6 months and was even in the hospital for nearly a month prior to the nursing home. Shouldn't something have been amiss in his bloodwork? More than one chest x-ray for his cough and nothing noticed. Of course I know that I will struggle with the blame game for a little while before accepting this thing that we cannot change. We were all more focused on bringing my father back to health from his years of drinking; maybe more worried about his liver and nutrition than acid reflux. I guess it is just concerning me because all that I am reading says it is usually not detected until it is in advanced stages. With the care he was receiving, I would think this wouldn't have gone unnoticed. And as it has been said before, Doctor's aren't gods but I have found that there are Dr.s who pay acute attention to the details.
I have learned a lot in just a days time. I started looking at Esophageal cancer as a whole but now looking at Adenocarcinoma specifically and now it makes sense why he has the excess mucus. I will keep on...0 -
Thanks for the welcome! Thischer76 said:Jennifer,
Welcome to our discussion board. It is so disheartening to have to welcome another person to this site because it means that yet another person has been struck with this terrible disease, but know that you have found a great place for information, compassion and caring. We are all in one way or another involved with this disease and we "get" you feelings, concerns and frustrations. Never hesitate to ask question here, as we will answer as best we can. We are not doctors, but have lived with this diagnosis and know things about the day to day living with it that others may not know or understand. We do not try to sugar coat anything, just give honest answers from our experiences, and share in your good days and bad. My husband, Rickie, was diagnosed with stage IV EC last October and is currently undergoing chemo treatment. You can read about our journey by clicking on my name on the left hand side of my post.
You did not mention where your father is being treated. If at all possible please see that he gets to a cancer treatment center that specializes in esophageal cancer. This cancer is fairly rare and many small town doctors have never treated anyone with it. We live in the very southern tip of Texas and while our doctors are good they just have not had the experience with it. Also a second opinion is always the way to go.
You mentioned that your father was losing weight. Since Rickie's symptoms first really started in the spring of 2010 until now he has lost over 140 pounds. He was a big guy to start with, which may have been a good thing, as he had weight he was able to loose without too much effect. Now it is a struggle to keep it on. If your father is having difficulty swallowing solids, you might want to get him to drink Ensure plus if he not already doing so. Also we made shakes out of whey protien. My husband is not a big fruit eater, so smoothies did not appeal to him at all. The nutritionist we saw suggested Jay Robb brand of whey protien because she said it actually tasted good and came in many flavors. I would mix up the chocolate kindwith a cup of whole milk and add a tablespoon of peanut butter, chocolate syrup, ice cream and a few ice cubes. I tried to add calories any way I could and sometimes would also add powdered milk to it as well. He actually would drink this. For a while it became his mainstay. Once he started on a chemo that worked the tumor shrank and he was able to get some solid foods down. But we occasionally resort to this old standby. He also had a feeding tube placed in June of this year, so when eating becomes a problem, he hooks up to the tube and gets some nutrition that way. A feeding tube is something you should discuss with your Dad's doctor if he is losing weight.
I hoped this has helped you somewhat. I understand the devastation you must feel. We have three children ranging in age from 33 to 23 and each is trying in their own way to cope with this diagnosis, as am I. please feel free to ask question. We here will all help as best we can.
Cheryl
Wife of Rickie, dx stage IV EC, October 2010
PS. When you post be sure to copy you text before hitting the post button, that way when it disappears into cyberspace, you still have a copy.
Thanks for the welcome! This site has offered tremendous support in such a short time. There is so much to learn from the personal experiences of others. And the best way to understand what this is all about is to hear it directly from those who are experiencing it first hand. I want to know all there is to know and how I can help my father as best I can.
We live in Saint Petersburg Florida and while I have the name of the oncologist we were referred to, I haven't even looked at it yet. That will be my next step of my research. While the Gastroenterologist's office spoke highly of the oncologist, I am not sure if they specialize in this form of cancer. I will be sure to find out.
My father's weight is of major concern to me since he has lost nearly 30 lbs over the last few months. He doesn't have an ounce to spare at this point. He has a small build and has never really had much meat on him, per say. Not a big eater either. But you can imagine my disbelief when he weighed in at just 102 lbs at this last appointment. I feel like having him admitted to the hospital for nutrition. He says he eats when he feels like his stomach is settled and the antacid has started working. I am encouraging him to drink his ensures more often. I told him that he has got to start taking in more than he is. He is so frail and it surprises me that he still has the energy and stamina to get around as he does. He is the kind of man that tinkers with things, and growing up, he was often called Handy Andy for that reason. My dad is still conjuring up projects to start and finish around the house. His energy is reassuring but I know he can't be doing too well when I think of his weight. I will certainly add the feeding tube discussion to my list. I just worry that he won't be a candidate for treatment. Another bridge to cross when we get there though.
I am 32 so I am within the same age group as your children and I feel for them. I have young children of my own and this is not the time in my life that I ever expected to be faced with the prospect of losing my father. I hope we get the most time we can with him. I was so happy to bring him home from the nursing home and we talked about him swimming in the pool during the summers with my son and I just don't want that possibility to end.I have to keep my chin up for him but the reality of it is crushing. I know that you understand and my heart goes out to you and your family. Thank you for your support.0 -
The sun shines bright right NOW!Jenny32 said:Thanks for the welcome! This
Thanks for the welcome! This site has offered tremendous support in such a short time. There is so much to learn from the personal experiences of others. And the best way to understand what this is all about is to hear it directly from those who are experiencing it first hand. I want to know all there is to know and how I can help my father as best I can.
We live in Saint Petersburg Florida and while I have the name of the oncologist we were referred to, I haven't even looked at it yet. That will be my next step of my research. While the Gastroenterologist's office spoke highly of the oncologist, I am not sure if they specialize in this form of cancer. I will be sure to find out.
My father's weight is of major concern to me since he has lost nearly 30 lbs over the last few months. He doesn't have an ounce to spare at this point. He has a small build and has never really had much meat on him, per say. Not a big eater either. But you can imagine my disbelief when he weighed in at just 102 lbs at this last appointment. I feel like having him admitted to the hospital for nutrition. He says he eats when he feels like his stomach is settled and the antacid has started working. I am encouraging him to drink his ensures more often. I told him that he has got to start taking in more than he is. He is so frail and it surprises me that he still has the energy and stamina to get around as he does. He is the kind of man that tinkers with things, and growing up, he was often called Handy Andy for that reason. My dad is still conjuring up projects to start and finish around the house. His energy is reassuring but I know he can't be doing too well when I think of his weight. I will certainly add the feeding tube discussion to my list. I just worry that he won't be a candidate for treatment. Another bridge to cross when we get there though.
I am 32 so I am within the same age group as your children and I feel for them. I have young children of my own and this is not the time in my life that I ever expected to be faced with the prospect of losing my father. I hope we get the most time we can with him. I was so happy to bring him home from the nursing home and we talked about him swimming in the pool during the summers with my son and I just don't want that possibility to end.I have to keep my chin up for him but the reality of it is crushing. I know that you understand and my heart goes out to you and your family. Thank you for your support.
Hey Jenny,
Hope you find this in good spirits for a new day! I am not writing this to 'inform' you of any more studies for now...LOL. Today I celebrate your location! I lived in Clearwater/Dunedin for 13 years as a teen and young adult! I know just where you are on the map! As a matter of fact, we are going to be headed to Spring Hill, Fl for the winter as hubby wants to be warm through the winter and not even deal with the cold here of Tennessee! I know that the last couple of days have been gray and rainy there, but the sun is out today and that is cause to celebrate. I truly believe in staying in the 'now' because for me, dealing with EC makes moments instead of days relative for me! I enjoy as many 'NOWS' as I can.
As for your response above, I am encouraged by your attitude and your ability to focus with intent. You seem to be pretty emotionally intelligent and wise beyond your years. This will be a benefit in this fight you are facing! I am here to tell you, you are a pillar of strength for your father and for your young children. I know that through your continued participation here in these halls others will much to gain from your experiences that you share. Please know that we are here for you and that you must also take great care of your needs as well so that you may remain that pillar!
Much care and support for you and your father!
Michelle0 -
Hi JennyJenny32 said:Thanks for the welcome! This
Thanks for the welcome! This site has offered tremendous support in such a short time. There is so much to learn from the personal experiences of others. And the best way to understand what this is all about is to hear it directly from those who are experiencing it first hand. I want to know all there is to know and how I can help my father as best I can.
We live in Saint Petersburg Florida and while I have the name of the oncologist we were referred to, I haven't even looked at it yet. That will be my next step of my research. While the Gastroenterologist's office spoke highly of the oncologist, I am not sure if they specialize in this form of cancer. I will be sure to find out.
My father's weight is of major concern to me since he has lost nearly 30 lbs over the last few months. He doesn't have an ounce to spare at this point. He has a small build and has never really had much meat on him, per say. Not a big eater either. But you can imagine my disbelief when he weighed in at just 102 lbs at this last appointment. I feel like having him admitted to the hospital for nutrition. He says he eats when he feels like his stomach is settled and the antacid has started working. I am encouraging him to drink his ensures more often. I told him that he has got to start taking in more than he is. He is so frail and it surprises me that he still has the energy and stamina to get around as he does. He is the kind of man that tinkers with things, and growing up, he was often called Handy Andy for that reason. My dad is still conjuring up projects to start and finish around the house. His energy is reassuring but I know he can't be doing too well when I think of his weight. I will certainly add the feeding tube discussion to my list. I just worry that he won't be a candidate for treatment. Another bridge to cross when we get there though.
I am 32 so I am within the same age group as your children and I feel for them. I have young children of my own and this is not the time in my life that I ever expected to be faced with the prospect of losing my father. I hope we get the most time we can with him. I was so happy to bring him home from the nursing home and we talked about him swimming in the pool during the summers with my son and I just don't want that possibility to end.I have to keep my chin up for him but the reality of it is crushing. I know that you understand and my heart goes out to you and your family. Thank you for your support.
Hi Jenny,
We are neighbors I live in Seminole, Fl. My husband just completed Chemo/Radiation and surgery. He was Diagnosis stage 3 on May 17, 2011. He did 5 weeks of chemo and radiation (at the same time) he had surgery on 9-9-11 at Moffitt. He had a GREAT outcome and the pathology report came back with no cancer cells. He went to local physicians (Pinellas County) for radiation and chemo. He went to Moffitt (Tampa) for surgery. The Radiation Oncologist is an awesome person, his name is Dr. Kevin Tralins and he is located in Largo. The medical Oncologist (same building as Dr. Tralins) that John went to for chemo trained at Moffitt. I do not know what part of St. Pete you live in but Largo should not be to far to go for a consult or second opinion. There is Moffitt right in our back yard only one-hour drive from my home (36 miles). Moffitt has a GI department with the entire GI team focused on GI cancer. If you need to talk or need help I am here for you. If you would like to speak on the phone you can private message me and I will give you my phone number.
Michelle When I first moved to Florida (10 years ago) my first job was in Dunedin, small world. The weather is back to beautiful today and you are so right I am learning to stay in the moment.
Let me know if I can be of any help
We are all in this together
Erica0 -
Such a small world we liveEricalynn said:Hi Jenny
Hi Jenny,
We are neighbors I live in Seminole, Fl. My husband just completed Chemo/Radiation and surgery. He was Diagnosis stage 3 on May 17, 2011. He did 5 weeks of chemo and radiation (at the same time) he had surgery on 9-9-11 at Moffitt. He had a GREAT outcome and the pathology report came back with no cancer cells. He went to local physicians (Pinellas County) for radiation and chemo. He went to Moffitt (Tampa) for surgery. The Radiation Oncologist is an awesome person, his name is Dr. Kevin Tralins and he is located in Largo. The medical Oncologist (same building as Dr. Tralins) that John went to for chemo trained at Moffitt. I do not know what part of St. Pete you live in but Largo should not be to far to go for a consult or second opinion. There is Moffitt right in our back yard only one-hour drive from my home (36 miles). Moffitt has a GI department with the entire GI team focused on GI cancer. If you need to talk or need help I am here for you. If you would like to speak on the phone you can private message me and I will give you my phone number.
Michelle When I first moved to Florida (10 years ago) my first job was in Dunedin, small world. The weather is back to beautiful today and you are so right I am learning to stay in the moment.
Let me know if I can be of any help
We are all in this together
Erica
Such a small world we live in. I am so happy to hear from someone that lives right here in our area! We are very near Dr. Tralins office. My Aunt and father live right minutes away. We just went to our first appointment today with the oncologist we were referred to, Dr. Anil Raiker. I found out that the Gastroenterologist suspects the cancer began in his stomach and has spread from there up his esophagus. I read the notes that were up on the Dr.'s computer and wrote down what I saw. It said Poorly Differentiated, Signet Ring Cell Adenocarcinoma, Distal esophagus. Initially the Dr. said that it is more than likely inoperable given that it has most likely spread. Then he said he couldn't say that for certain until my dad's PET scan results are reviewed. The scan is scheduled for Friday and apparently we are due for a follow-up a week later for the results. I don't know how they expect us to wait that long for answers. Additionally, the are supposed to call us with an appointment for my dad to see the radiologist to discuss the treatment options. I am frantic about his weight though and mentioned that my dad needs a feeding tube. He said they will most likely add one when he has the stent for chemo put in. He weighed in at 100 lbs today. 2 lbs less than his last appointment on Friday. The Doctor told him to drink 4 or more Glucerna a day. I can't see my dad getting more than 2 down a day. I don't know if the Nestles will be okay since he is diabetic, although he hasn't needed to take anything for it lately. Seems to be in check.
My dad's chest is in pain and discomfort and I feel certain that he has been battling this for some time undetected, as is the case for most here. I think that most of the physicians overseeing his care chalked off his symptoms as alcoholism related. Nobody could ever explain to me why he has had diarrhea for well over a year now. Even after he had been off of alcohol it continued but his Doctor attributed it to his liver and organs still trying to heal. When I first had my dad admitted to the hospital almost a year ago, he was seriously malnourished and was experiencing constant and profuse diarrhea. Of course, his main diet at the time was alcohol and not much more but I think it was because he had trouble eating even then. His health made a turn around in the nursing facility and he put on weight again. I can't help but think that the constant nourishment and lack of alcohol and tobacco kept the cancer from taking him completely down then. Now he is home and sober but the cancer is catching up to him fast.
As I sit here and reread this, it makes me so sad. I understand that my dad didn't value his health and his life as he should have for most of his life but he has always been a good man and nobody deserves an ending like this. And now here he is finally clean and sober and I fear this time is going to be short lived with him.
It was so hard to stay positive when I look at him and he is completely skin and bones. It is hard to find hope when he already looks so close to death.
I was strong for him today but this past weekend was rough. I realized on Monday that I was still wearing the same shirt from Friday. I cried a lot and by Monday I didn't want to get out of bed. I think I got that out of my system enough that I can continue taking care of everyone else around me for the time being and I have been spending more time researching.
I can't stand this waiting game for the answers. Hopefully the appointment with the radiologist will be schedule right away. I will find that out tomorrow.
Erica, thank you so much for your post. So great to hear another story of survival! And I am so very grateful for your recommendations. My sister actually mentioned Moffitt today. I definitely want to make sure that my dad has the best team on his side and more than one opinion is always important.
Thank you again!
Jenny0 -
Jenny,
In the face of such devastating circumstances remember that even the time you have right now is a blessing. Even though the journey is not over and the news appears bad right now, please do remember that you have been given this time with your father in a clear state of mind. Focus on the good that can come of this, and believe me I know it is difficult to find positive in such a tough time. Though it is much easier when you 'choose' to just do it. Everything we do is a choice, and in this moment you can choose to enjoy and celebrate your father's presence and clear mind at this point. These are the memories that will build you up when you are having a bad day or even a bad moment. It truly is a choice. Dwelling in all the pain and sorrow for long periods of time can cloud our ability to see even the glimpses of great moments. Stay in the NOW, as we are not guaranteed tomorrow, and yesterday is passed, we have only NOW!
Much care and concern!
Michelle
P.S. This is not to say that you can't give yourself permission to cry and feel sad, as that is perfectly normal. But don't let it consume all the moments you can enjoy and cherish going forward.0
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