My Dad was diagnosed with EC 1 month ago...weight and many other questions
He has been diagnosed at Stage 3, the cancer has spread to some lymph nodes, but nowhere else as of yet. He was given pills yesterday to make him eat, and has morphine, and was given something similiar to a valum, but it's not a valum, he is able to eat now, which is good, but all he is doing with taking all of this medication is eating and sleeping.
I know i have been rambling on here, i guess i need to just keep it at one question at a time. Right now my biggest fear is his weight, can anyone give me any insight on this?
Thanks so much for all the help and advice in advance.
God Bless and strengthen all you!
Shantel
Comments
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Hello Sherri and thanks sounknown said:This comment has been removed by the Moderator
Hello Sherri and thanks so much for your reply.
My Dad is not having difficulties swallowing. It is after he eats, the pain is unbearable for him. It takes him several hours to get over the intense pain even with the pain medicine he was taking which was oxycodone, when that didn't help, they prescribed him Morphine, 10mg, liquid form. After eating the pain was still unbearable, even with the morphine, so he basically stopped eating. He tried the Ensure shakes, and he said the pain was worse from that than other foods. He met with the Radiation doctor for the first time this past Wednesday, and that Dr. told him he must put on some weight by Monday when he comes back to the Dr. That Dr is the doctor that gave him the pills similar to Valums and also gave him some pills to make him want to eat. He has no trouble eating now, but he is out of it most of the time. He only gets up long enough to eat or drink, then goes back to sleep.
He is a candidate for surgery, we believe. The chemo Dr which he met with for the first time this past Tuesday was very negative and told him that he had gone too far downhill, and that it takes a stout man to withstand this type of surgery. That was very upsetting for the whole family, and my Dad lost a little bit of hope after that doctor visit. The plan right now is that he will start aggresive chemo as an inpatient for 5 days, go home, do radiation for 5 days, and reapeat this for 6 weeks. The problem is, my Dad only weighs 118 pounds, and i don't know if he has enough weight on him to endure 6 weeks of chemo/radiation treatment.
We live in North Carolina. My Dad has always been self employed and his wife carried the insurance. His wife is sick with MS and was layed off of work 1 year ago. They kept insurance through Cobra, but after the 9 months was up, my Dad, told her to go ahead and drop him off of the insurance because of the rates, and he can always go to the VA Hospital if needed. 1 month later my dad found out he had EC and has no choice but to seek medical care from the VA.
The chest surgeon that will be performing his surgery, is a surgeon at Wake Forest hospital, so i believe he has an ok surgeon. The surgeon told him when he comes to get the port placed in his chest, at that time he would place a feeding tube also.
This is pretty much where we stand right now.
Thanks so much for your reply and I would love to obtain any other information that you may have that you think may be helpful to my Dad.
I am so very sorry that your husband is not a candidate for surgery, I know how hard this must be on your family. You are a dear person to lend your knowledge to the rest of us.
Shantel0 -
Shanteunknown said:This comment has been removed by the Moderator
Hi Shante,
I am 65 was Stage III squamous with 1 lymph node and weighed about 121 lbs when they operated on me in Dec. I had to have a NG tube before surgery because of the weight I had lost during chemo and radiation. They did not do a j tube then because they were afraid it might complicate the surgery with an infection, but have had a j tube since the surgery for the past three months and it has helped me gain 6 pounds and feel a lot better. Is there something the drs can do to intervene for the pain when your dad eats? I did not have that, could not swallow anything but liquids during my treatment, now I can eat and do the j tube feedings. Since your Dad was in good health before that maybe he needs something done about what is causing that pain before he gets all the treatment, maybe a second opinion and maybe a j tube or NG nasogastric tube to build him up. Hoping that a solution is found for your Dad, prayers coming your way.
Donna700 -
This comment has been removed by the ModeratorDonna70 said:Shante
Hi Shante,
I am 65 was Stage III squamous with 1 lymph node and weighed about 121 lbs when they operated on me in Dec. I had to have a NG tube before surgery because of the weight I had lost during chemo and radiation. They did not do a j tube then because they were afraid it might complicate the surgery with an infection, but have had a j tube since the surgery for the past three months and it has helped me gain 6 pounds and feel a lot better. Is there something the drs can do to intervene for the pain when your dad eats? I did not have that, could not swallow anything but liquids during my treatment, now I can eat and do the j tube feedings. Since your Dad was in good health before that maybe he needs something done about what is causing that pain before he gets all the treatment, maybe a second opinion and maybe a j tube or NG nasogastric tube to build him up. Hoping that a solution is found for your Dad, prayers coming your way.
Donna700 -
This comment has been removed by the ModeratorShanty said:Hello Sherri and thanks so
Hello Sherri and thanks so much for your reply.
My Dad is not having difficulties swallowing. It is after he eats, the pain is unbearable for him. It takes him several hours to get over the intense pain even with the pain medicine he was taking which was oxycodone, when that didn't help, they prescribed him Morphine, 10mg, liquid form. After eating the pain was still unbearable, even with the morphine, so he basically stopped eating. He tried the Ensure shakes, and he said the pain was worse from that than other foods. He met with the Radiation doctor for the first time this past Wednesday, and that Dr. told him he must put on some weight by Monday when he comes back to the Dr. That Dr is the doctor that gave him the pills similar to Valums and also gave him some pills to make him want to eat. He has no trouble eating now, but he is out of it most of the time. He only gets up long enough to eat or drink, then goes back to sleep.
He is a candidate for surgery, we believe. The chemo Dr which he met with for the first time this past Tuesday was very negative and told him that he had gone too far downhill, and that it takes a stout man to withstand this type of surgery. That was very upsetting for the whole family, and my Dad lost a little bit of hope after that doctor visit. The plan right now is that he will start aggresive chemo as an inpatient for 5 days, go home, do radiation for 5 days, and reapeat this for 6 weeks. The problem is, my Dad only weighs 118 pounds, and i don't know if he has enough weight on him to endure 6 weeks of chemo/radiation treatment.
We live in North Carolina. My Dad has always been self employed and his wife carried the insurance. His wife is sick with MS and was layed off of work 1 year ago. They kept insurance through Cobra, but after the 9 months was up, my Dad, told her to go ahead and drop him off of the insurance because of the rates, and he can always go to the VA Hospital if needed. 1 month later my dad found out he had EC and has no choice but to seek medical care from the VA.
The chest surgeon that will be performing his surgery, is a surgeon at Wake Forest hospital, so i believe he has an ok surgeon. The surgeon told him when he comes to get the port placed in his chest, at that time he would place a feeding tube also.
This is pretty much where we stand right now.
Thanks so much for your reply and I would love to obtain any other information that you may have that you think may be helpful to my Dad.
I am so very sorry that your husband is not a candidate for surgery, I know how hard this must be on your family. You are a dear person to lend your knowledge to the rest of us.
Shantel0 -
Thank You William Marshall and a wee bit of good newsunknown said:This comment has been removed by the Moderator
Hello! Thank you so much William for your wealth of information!!!! I also want you to know how much it means to me and my family for you to use your precious time and gather all of these knowledgable links and especially for you making that phone call and caring enough for others to do all that you do here. You are an awesome person!
My Dad went back to the radiation doctor today only to be weighed and he has gained 3 pounds and now weighs 121 pounds! He will go back to the radiation doctor Wednesday and will be marked for radiation then. We still know nothing yet about when any of this will actually begin. My Dad has his 2nd appointment with the oncologist on March 22, maybe we will get the ball rolling with treatment then.
I have discussed alot of this information with my Dad that you have presented to us, and he is thinking it over, i did stress the urgency here with him.
Please keep praying for him and i will keep everyone updated. Im sorry this is not more detailed, but, right now time is of the essence.
Thanks so much to you all and i welcome any guidance or information.
God Bless,
Shantel0 -
may need WIlliam's help here with my replyShanty said:Thank You William Marshall and a wee bit of good news
Hello! Thank you so much William for your wealth of information!!!! I also want you to know how much it means to me and my family for you to use your precious time and gather all of these knowledgable links and especially for you making that phone call and caring enough for others to do all that you do here. You are an awesome person!
My Dad went back to the radiation doctor today only to be weighed and he has gained 3 pounds and now weighs 121 pounds! He will go back to the radiation doctor Wednesday and will be marked for radiation then. We still know nothing yet about when any of this will actually begin. My Dad has his 2nd appointment with the oncologist on March 22, maybe we will get the ball rolling with treatment then.
I have discussed alot of this information with my Dad that you have presented to us, and he is thinking it over, i did stress the urgency here with him.
Please keep praying for him and i will keep everyone updated. Im sorry this is not more detailed, but, right now time is of the essence.
Thanks so much to you all and i welcome any guidance or information.
God Bless,
Shantel
Hi Shantel,
I can not answer most of your questions---but realized I should reply for a couple of reasons. Mainly---my dad is a small man too--5'4" and weighed 150 at most, 145 at his stage 3 diagnosis 8/09. I know your dad is smaller, but I do believe he can do it---if they (medical team--dietitians/Dr>s) can find a way to enable him to get nutrition IN him.
He is 72 now, but was extremely healthy & active before diagnosis (was actually ACTIVE volunteer firefighter---now doing light duty). He, though also had that severe pain with eating, but his was more "sporadic" so he never really knew what food would cause it. It seems as though your dad has it more often. It seemed as though the esophagus reacted to some food with a "spasm" like a "charley horse" you have in a regular muscle. When it subsided he was fine---but he said it was extremely painful and he is not one to complain. I know that I am not helping you with this except to let you know that you are not alone.... So I agree with everyone to make sure you get a good picture of what is going on---just wanted you to know someone else has had this pain, but not to the extreme that your dad seems to have.
Also, my dad is in NC, but did not have insurance problems--they went to DUKE and were able to do a clinical trial. I think it is at least worth a call if it is close by or if you want a good 2nd opinion. Duke does have programs to help those with different insurances I believe.
Anyway--Shantel--just send me a private email if you have questions-I can share what we have been through. (click on "home" at top of page and then click csn email-put my user name or anyone elses in the "to" open field)
This is a challenging journey--but you will see survivors are out there---Like William! Also another stage 3 survivor runs a website called fight EC (esophageal cancer) to see his story see: www.fightec.org/
We wil be praying for you, your dad and family!
Kim0 -
Thank You Kim...that's it exactly!!!K_ann1015 said:may need WIlliam's help here with my reply
Hi Shantel,
I can not answer most of your questions---but realized I should reply for a couple of reasons. Mainly---my dad is a small man too--5'4" and weighed 150 at most, 145 at his stage 3 diagnosis 8/09. I know your dad is smaller, but I do believe he can do it---if they (medical team--dietitians/Dr>s) can find a way to enable him to get nutrition IN him.
He is 72 now, but was extremely healthy & active before diagnosis (was actually ACTIVE volunteer firefighter---now doing light duty). He, though also had that severe pain with eating, but his was more "sporadic" so he never really knew what food would cause it. It seems as though your dad has it more often. It seemed as though the esophagus reacted to some food with a "spasm" like a "charley horse" you have in a regular muscle. When it subsided he was fine---but he said it was extremely painful and he is not one to complain. I know that I am not helping you with this except to let you know that you are not alone.... So I agree with everyone to make sure you get a good picture of what is going on---just wanted you to know someone else has had this pain, but not to the extreme that your dad seems to have.
Also, my dad is in NC, but did not have insurance problems--they went to DUKE and were able to do a clinical trial. I think it is at least worth a call if it is close by or if you want a good 2nd opinion. Duke does have programs to help those with different insurances I believe.
Anyway--Shantel--just send me a private email if you have questions-I can share what we have been through. (click on "home" at top of page and then click csn email-put my user name or anyone elses in the "to" open field)
This is a challenging journey--but you will see survivors are out there---Like William! Also another stage 3 survivor runs a website called fight EC (esophageal cancer) to see his story see: www.fightec.org/
We wil be praying for you, your dad and family!
Kim
Thank you so much for replying, and yes im glad to know someone else has experienced some of the same symptoms. What you described is my Dads symptoms exactly!! I am sorry though that your Dad had to experience this horrible disease. How is your Dad doing now? What part of NC is your Dad in? I will be emailing you privately, i would love to hear your Dads full story, your Dad is the only person with the same symptoms as my Dad and i am extremely concerned about my Dad's weight and the type of pain he is experiencing.
God Bless!
Shantel0 -
Hi Shantyunknown said:This comment has been removed by the Moderator
I read your story about your dad and wanted to say I'm sorry. My hubby was diagnosed with EC about the same time your dad was. I believe it is quite a road we have only begun to walk down and I have found this website a great wealth of info and support.
Hubby is 49 and we have two kids age 11 and 14. He has always weighed around 210 and is 5'11". At the time of diagnoses he weighed around 190. He now weighs 154. The battle to eat is a everyday thing. He has had one round of chemo and did great.
I can understand your worry and wish I had answers for you. He eats the nutrition drinks. They are a great help. GNC has a high calorie and high protein powder that I add to put even more calories and protein in his drinks.
I wish your dad and your family the best of luck. We can keep in touch and maybe swap secret strategies to help our loved ones.0 -
Hellonancyann3 said:Hi Shanty
I read your story about your dad and wanted to say I'm sorry. My hubby was diagnosed with EC about the same time your dad was. I believe it is quite a road we have only begun to walk down and I have found this website a great wealth of info and support.
Hubby is 49 and we have two kids age 11 and 14. He has always weighed around 210 and is 5'11". At the time of diagnoses he weighed around 190. He now weighs 154. The battle to eat is a everyday thing. He has had one round of chemo and did great.
I can understand your worry and wish I had answers for you. He eats the nutrition drinks. They are a great help. GNC has a high calorie and high protein powder that I add to put even more calories and protein in his drinks.
I wish your dad and your family the best of luck. We can keep in touch and maybe swap secret strategies to help our loved ones.
Thanks so much for responding to my post. I am sorry to hear about your husband and i do agree with you, I think we have a long hard road ahead of us.
My Dad was admitted in the hospital just this morning and is today beginning his first round of chemo. His weight is at 117pounds, Drs say that they are going to keep my Dad longer than just the 5 days for chemo. They are going to keep him until he puts on some weight. I pray he does well with the chemo.
Please keep me updated on your husband and I would love to hear how everything is going and how he is doing. I wish your family the best of luck.
Shantel0 -
Father with cancer as well.
Hi there,
I was searching the internet looking for survivor stories and such to give my father more hope and encouragement. My father was diagnosed with esophageal cancer on June 26, 2009. He was diagnosed with terminal cancer. By the time they found it there were three tumors in his esophagus, one in his kidneys, one on his liver, and it had spread to his blood. My father is still living! He has had trouble eating, but my father's advice to your father is to always, always keep the mindset that he will beat this thing. Never let the thought that it's too rough to beat. The mind is an incredibly powerful thing. My father also has extreme faith in the Lord. My father has been receiving chemo and radiation. It killed the three tumors in his esophagus and the one on his liver. We are now just facing the cancer in his kidney and in his blood. Doctors are going to cyberknife the cancer in his kidney then they will only have to worry about the cancer in his blood. This thing IS beatable! My father was terminal, but now they believe that he might just beat this thing! Your father needs to eat no matter what. Even if it is a struggle, he needs to try. Even if he's not hungry, he needs to eat. My father is 62 years old, his weight has bounced from highs to lows.
My father was given less than three months to live, and he has now survived 9 months. I am sure my father is going to beat this, and I have no doubt that your father has the same capabilities!
One doctor that you might be interested is Dr.Jergens with John Hopkins University. That's who my father has seen several times. Also, one thing that has helped give my father hope is by reading a bunch of stories about people that have survived cancer and such. One book that he has read non-stop is Cancer: 50 Essential Things To Do by Greg Anderson. My father recommends that book.
I wish you the best of luck! I will keep your father in my prayers along side my own father.0 -
This comment has been removed by the ModeratorRachelKH said:Father with cancer as well.
Hi there,
I was searching the internet looking for survivor stories and such to give my father more hope and encouragement. My father was diagnosed with esophageal cancer on June 26, 2009. He was diagnosed with terminal cancer. By the time they found it there were three tumors in his esophagus, one in his kidneys, one on his liver, and it had spread to his blood. My father is still living! He has had trouble eating, but my father's advice to your father is to always, always keep the mindset that he will beat this thing. Never let the thought that it's too rough to beat. The mind is an incredibly powerful thing. My father also has extreme faith in the Lord. My father has been receiving chemo and radiation. It killed the three tumors in his esophagus and the one on his liver. We are now just facing the cancer in his kidney and in his blood. Doctors are going to cyberknife the cancer in his kidney then they will only have to worry about the cancer in his blood. This thing IS beatable! My father was terminal, but now they believe that he might just beat this thing! Your father needs to eat no matter what. Even if it is a struggle, he needs to try. Even if he's not hungry, he needs to eat. My father is 62 years old, his weight has bounced from highs to lows.
My father was given less than three months to live, and he has now survived 9 months. I am sure my father is going to beat this, and I have no doubt that your father has the same capabilities!
One doctor that you might be interested is Dr.Jergens with John Hopkins University. That's who my father has seen several times. Also, one thing that has helped give my father hope is by reading a bunch of stories about people that have survived cancer and such. One book that he has read non-stop is Cancer: 50 Essential Things To Do by Greg Anderson. My father recommends that book.
I wish you the best of luck! I will keep your father in my prayers along side my own father.0
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