Father Newly Diag. with EC Stage IV w/mets to Liver

Magoo1113

First and foremost, so relieved to find this Discussion Board and will certainly visit and use it often. Thank you all for being so open and helpful, especially to those of us "new" to this nightmare.

My father was diagnosed last week with EC.

Initial diagnosis was T3N1M0, to be treated with chemo and radiation followed by surgery in 4 mos. However, upon second review cancer has been detected in liver and he has now been diagnosed with T3N1M1, Stage IV.

He is being treated at MSKCC. Surgery and Radiation are no longer on the table for the immediate future. Treatment now will be a cocktail of 3 different chemos (Herceptin, 5FU Fluorouracil and Irinotecan) administered for 48 hrs every 2 weeks for 8 weeks. At 8 weeks he will be restaged. My Father successfully beat Kidney Cancer 5 years ago, but as result is working off of only 1 kidney. The doctors are extremely happy with how in shape and strong my Father is, saying that he is starting from a really great baseline.

In addition to his medical treatments, my Father has adjusted his diet to include a lot of juices/smoothies made with organic fruit and veggies. If anyone has any insight on other "methods" they used during their fight - diet, yoga. meditation, acupuncture, exercise, etc., I would be so so appreciative to learn more!!!

I would also love to hear success stories. My family are all strong believers that in order to beat this one must truly, sincerely believe he/she will beat it - not just have a positive attitude and not just say he/she will beat it as a cheer, but to truly BELIEVE he/she will beat it. I would like to have success stories on hand so in the moments when my Father may doubt it, I can remind him that he WILL be successful as others have been.

And of course any and all other insight/advice/suggestions/and prayers are extremely appreciated. As you all unfortunately know, this is one of the most confusing, scary, and somewhat loneliest experiences one can ever imagine. Now that I am past both the anger and denial stages I am fully focused and determined on getting his through this.

Thanks. My prayers and healing thoughts are with you all in your own battles.

Unknown

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ArchTB

Irinotecan and kidney failure
Sorry to hear about your father. I am wishing you strength in dealing with this new situation. Luckily your father is being treated at MSK, which is probably the best you can get. My husband is getting his treatment there for Stage 3 EC and is also using irinotecan as part of his treatment.
I wanted to point out to you that irinotecan has some major side effects on kidneys and given your dad's history, you might want to discuss this option with the doctor. If, however, you still decide to go ahead with this treatment, make sure that he gets to drink a lot of liquid (A LOT!) and not just water.
Another thing to watch out for is the blood clots in legs that might travel up. Any complain about soreness, numbness or muscle pain in legs should be taken very seriously.

Wishing you and your father good health,
Olya

BMGky

So hope your father does
So hope your father does well. My husband's treatment was for a different stage so I don't have pertinent information to offer; however, there are so many on this website who know so much. Ask your questions even if you think they may appear simple, someone will help. Know that all the people on this Board are wishing your Dad and family the best.

Unknown

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sal314

Welcome to the Board Magoo
Sorry to hear about your dad's diagnosis. My father was also diagnosed with inoperable stage IVb EC cancer in March of 2010. When he was diagnosed it was already in several lymph nodes and his liver. It has since spread to his spine and bone in his arm.

Like Mr. Marshall stated, I'm not sure why he wouldn't go through radiation. It does help shrink tumors and slow down spread of the cancer. It's also used for pain management in bone mets as well.

As much as I BELIEVE in miracles and that God can/will/does still heal people, there is also a very realistic side to EC. You have to continue to have hope, but also can't ignore the REAL possibility that your dad's time is limited. So....cherish every day you have with him, celebrate like crazy when he's feeling "good" and prepare yourself for the very bumpy, wild roller coaster ride. There are so many "up and down" times, you will definitely need strength to "hold on".

You've come to the right place for encouragement, support and honesty about EC (better known around here as "the Beast").

Blessings,

Sally

Magoo1113

unknown said:

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Thank you William
Thank you so so much for the wonderful information William!!! I am so sorry for my delay in reply; we have a death in the family (childhood cancer) which has had all of my attention recently. I truly appreciate all of the information and good words, thank you.

My father was diagnosed after having a pain in his lower chest/upper stomach area...similar to acid reflux. He was also a bit nauseous; however, had recently been diagnosed with advanced Lyme Disease and was being treated with some heavy duty antibiotics, which he assumed were bothering his stomach. He was also extremely tired. From first recognized symptom to diagnosis was about 2 months.

MSKCC is his second opinion, receiving the first with a local oncologist in CT. Luckily we are extremely blessed with a sister who is an Oncology NP, and though she specializes in liquid tumors and Stem Cell transplants, she has extensive knowledge of all cancers in general. She has full access to my father's cancer fight in regards to his medical decisions, etc.

As far as radiation and surgery, they could be considered down the line depending on his response to chemo. But because they can't cure the liver mets, the goal of treatment is to provide quality of life for as long as possible. Radiation and surgery adds to toxicity and complications without adding any survival benefit.

We will certainly look into the TheraSphere, thank you. It may have been a conversation my sister and parents have already had with the doctors and I am just not aware of it. But I will certainly ask, thank you.

A J-tube, with which we are unfortunately very familiar, was initially discussed but again put on hold when radiation was put on hold. However, that said, my father is having a very difficult time eating right now and despite his intake of 2500 cal. a day, he's lost 3 lb. therefore perhaps the J-tube will again be discussed as a more comfortable way to get his daily calories.

We presently have my father drinking fresh smoothies and juices daily filled with recommended veggies, fruits, and mushrooms. He has had 2 rounds of chemo and thus far have experienced little to no side effects. He has 2 more rounds and will then be restaged.

Thank you again for the great info. I am going to review all of your great resources of information.

Warmest,
Meghan

Magoo1113

sal314 said:

Welcome to the Board Magoo
Sorry to hear about your dad's diagnosis. My father was also diagnosed with inoperable stage IVb EC cancer in March of 2010. When he was diagnosed it was already in several lymph nodes and his liver. It has since spread to his spine and bone in his arm.

Like Mr. Marshall stated, I'm not sure why he wouldn't go through radiation. It does help shrink tumors and slow down spread of the cancer. It's also used for pain management in bone mets as well.

As much as I BELIEVE in miracles and that God can/will/does still heal people, there is also a very realistic side to EC. You have to continue to have hope, but also can't ignore the REAL possibility that your dad's time is limited. So....cherish every day you have with him, celebrate like crazy when he's feeling "good" and prepare yourself for the very bumpy, wild roller coaster ride. There are so many "up and down" times, you will definitely need strength to "hold on".

You've come to the right place for encouragement, support and honesty about EC (better known around here as "the Beast").

Blessings,

Sally

Thank you Sally
Thank you so much for sharing and for the support Sally. I am so sorry for your father's own fight against the Beast. I will keep him in my thoughts and prayers.

They are tabling radiation and surgery as the docs determined with my father's cancer they (rad & surgery) add to toxicity and complications without adding any survival benefit. If his response to the chemo is positive then radiation will be reconsidered. He will be restaged in 5 weeks, after his fourth round of chemo.

Thank you again for reaching out. Please do stay in touch. I am happy and relieved to have found through this EC community a "home" with others in my and my family's position.

Warmest,
Meghan

Magoo1113

BMGky said:

So hope your father does
So hope your father does well. My husband's treatment was for a different stage so I don't have pertinent information to offer; however, there are so many on this website who know so much. Ask your questions even if you think they may appear simple, someone will help. Know that all the people on this Board are wishing your Dad and family the best.

Thank You!
Thank you so much BMGky. My thoughts and prayers are with not only my father but everyone in this community.

Magoo1113

ArchTB said:

Irinotecan and kidney failure
Sorry to hear about your father. I am wishing you strength in dealing with this new situation. Luckily your father is being treated at MSK, which is probably the best you can get. My husband is getting his treatment there for Stage 3 EC and is also using irinotecan as part of his treatment.
I wanted to point out to you that irinotecan has some major side effects on kidneys and given your dad's history, you might want to discuss this option with the doctor. If, however, you still decide to go ahead with this treatment, make sure that he gets to drink a lot of liquid (A LOT!) and not just water.
Another thing to watch out for is the blood clots in legs that might travel up. Any complain about soreness, numbness or muscle pain in legs should be taken very seriously.

Wishing you and your father good health,
Olya

Thank you Olya
Thank you so much Olya. We have him drinking everything and anything (except alcohol) and eating jello like it's going out of style!!! We will certainly be sensitive to any symptoms indicative to clots, thank you. I didn't know that.

Your husband is in our prayers and thoughts. And yes, both of them, and we as loved ones, are in the greatest of hands at MSKCC.

Warmest,
Meghan

sal314

Magoo1113 said:

Thank you Sally
Thank you so much for sharing and for the support Sally. I am so sorry for your father's own fight against the Beast. I will keep him in my thoughts and prayers.

They are tabling radiation and surgery as the docs determined with my father's cancer they (rad & surgery) add to toxicity and complications without adding any survival benefit. If his response to the chemo is positive then radiation will be reconsidered. He will be restaged in 5 weeks, after his fourth round of chemo.

Thank you again for reaching out. Please do stay in touch. I am happy and relieved to have found through this EC community a "home" with others in my and my family's position.

Warmest,
Meghan

Your Welcome Meghan
I just realized the date I last responded to you...Feb. 12 in the A.M. My father was rushed to the ER that same evening about 6:30 and stayed there until he passed away 4 days later. Things just turned on a dime and he declined quickly. Hard to believe that Sat. morning he got up, ate a full breakfast and watched golf before throwing up lots of blood and collapsing. The main tumor in his esophagus just kept bleeding and his liver started to fail. There was nothing anyone could do.

He passed 3 weeks ago today. Though it's still very raw and somewhat surreal, I do get comfort knowing he's will the Lord and in no more pain. And someday, when I get called home, I'll see him again.

I'll continue to pray for you, your dad and family. It's a tough road, but God can give you the strength to walk through it. Just keep positive, keep educating yourself about EC and cherish the time you have with your dad!

Blessings,
Sally

Magoo1113

sal314 said:

Your Welcome Meghan
I just realized the date I last responded to you...Feb. 12 in the A.M. My father was rushed to the ER that same evening about 6:30 and stayed there until he passed away 4 days later. Things just turned on a dime and he declined quickly. Hard to believe that Sat. morning he got up, ate a full breakfast and watched golf before throwing up lots of blood and collapsing. The main tumor in his esophagus just kept bleeding and his liver started to fail. There was nothing anyone could do.

He passed 3 weeks ago today. Though it's still very raw and somewhat surreal, I do get comfort knowing he's will the Lord and in no more pain. And someday, when I get called home, I'll see him again.

I'll continue to pray for you, your dad and family. It's a tough road, but God can give you the strength to walk through it. Just keep positive, keep educating yourself about EC and cherish the time you have with your dad!

Blessings,
Sally

So sorry
I am so, so very sorry for your loss, Sally. Thank you for the encouragement. You and your family are in my prayers.

Warmest,
Meghan

Unknown

Magoo1113 said:

So sorry
I am so, so very sorry for your loss, Sally. Thank you for the encouragement. You and your family are in my prayers.

Warmest,
Meghan

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