Turning point good or bad

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This whole journey has been so difficult and mind blowing...

My dad was Diagnosed with stomach cancer in feb 2009, by way of a blood clot in his left calf.
He's been progressing along where we thought things were getting better, he was told he had stomach cancer and the kidney was affected...

Affected that's all we were told, so many question so few answers. And we understood there would be answers as things went on. Or so we thought.

He was put on chemotherapy the fu5 therapy now im finding out we were so not informed. He responded successfully after two full cycles.. Taken off the chemo.. 6 weeks later go in for a PET scan as normal. Went the following week into the office for the results.

We were informed that the cancer has progressed. they finally told us he was stage IV...found out it's incurable but we can treat it the doctors said to us. So the journey began...the kidneys weren't actively affected but now his esophagus is...in a brief two months time..he began having issues swallowing. this progressed until he was unable to eat or drink anything.

In Novemeber he had a endoscopy done where they stretched his espohagus which helped for about a month..now its May and he's unable to eat or drink or take medications at all. He had a feeding tube put in back in november but has the "superman Complex" going that he didn't need it.

Well at least that was until last wednesday when we went into the office and he was on the brink of organ failure. kidneys' were ready to shut down. Luckily they gave him fluids in the office for the next four days, now we are waiting to go see the specialist on this wednesday to see what is going to be done. The same one that performed the endoscopy and put in the feeding tube. *my dad is finally putting ensure through the tube 4-5 times a day for the last few days*..

He's lost so much wieght we fear the worst but hope for the best.

Is there anyone that can offer any advice ??

Prior to this my dad hasn't had as much as a cold since he was a child with rhematic fever

Valerie

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  • Unknown
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  • Faithful_Angel
    Faithful_Angel Member Posts: 86
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    I hate to say it but until i
    I hate to say it but until i joined this sight i thought i knew alot about my dad's cancer. Now I realize there is much more to learn.

    My Dad is 57 years young. He went into the hospital *emergency room* due to the pain in his leg..they found he had a blood clot, they treated him with blood thinners which included levenox in the stomach got that under control, did the normal blood tests that i was informed were routine in this. Prior to this my dad had not even been to a doctor is 20+ years. He had been healthy.

    The doctors found "abnormal "levels in his blood. So they started doing other tests. I was led to believe this was just "routine" due to the blood clot. Told he was lucky he came in this blood clot could have broke off traveled to his lungs, and killed him. I knew this of hearing about blood clots in the past.

    Anyway scans were done ect. A oncologist was brought in and it was like one of those commercials the doctor stood there at the foot of his bed and said Thomas you have Cancer...as we sat there I was stunned, couldn't formulate any words..and he was so stoic as was in his character he just said "OK" Now what?

    He said they needed to do more testing so here began our journey...it was Feb 17,2009 in the next three days we sat in this small hospital room in Louisville kentucky waiting to hear his fate.

    they did Ct scans which led to more answers they said but actually just brought many more questions.

    the doctors diagnosis Stomach Cancer Stage IV left kidney "involved" I still have so many questions. And so few answers .

    I asked about surgery they stated he wasn't a canidate for surgery..The type of cancer we are dealing with in the late stages we found it's incurable but treatable is what the doctors told us.

    I look back now i wish that we had gotten a second opinion.

    The treatment...

    The doctors started him on a chemotherapy.. i believe it was the FU 5 or 5 FU *i can't remember which one it is* did that for 4 rounds and repeated the ct scan and did PET scans. We were told he responded well to this therapy. At this time My dad was not all that sick from the looks of it. He was still eating not losing much weight. At the start of this My Dad weighed around 245 lbs.

    His team of doctors decided he was doing so well, they would give him a break from the chemo and see what the next scan told. *This i think now was the worst thing they could do* during this six weeks off, i noticed as soon as Dad would try to eat the hiccups would occur within 5 mins.. at first i thought nothing of it. Then the hiccups persisted so much it would cause him to not want to eat as much.

    Somehow through all of this I began really trying everything i knew to get him to eat more, i saw things starting to decline rapidly, and of course my family thought i was overreacting, somehow i became his caregiver, even though my mother *his wife* lives in the house as well, I was the one that focused on my dad, and his needs, urging him to eat, take his meds, and talk to his doctors of course my dad refused there was a problem *denial probably*

    Things got worse My dad started losing alot of weight. He started having trouble swallowing things progressed this way for several months until he all but quit eating. My dad started getting very weak. After much tension and many tears shed I finally put my foot down and got him to admit there was a problem. A few days later He finally agreed to go to the ER just to get checked out. He was dehydrated, malnurished they admitted him. And this is when we met Dr. Greenwell he performed a endoscopy stretched his esophagus and put in a feeding tube. Dad was released a day later.

    At the time of his release he was again able to eat and drink pretty freely. Dad was actually starting to gain some weight back at this time he was up around 185-190 lbs. November 2010

    I finally made an appt with my dad's oncologist for a "follow up" they ordered a ct scan. with the "berry flavored barium" It seems i had to fight my dad in every step to get him through these tests. anyway

    The test was performed and a week later we were sitting in the exam room being told things aren't looking as promising we need to start being more aggresive, A new Medication was prescribed..A chemo regimen... and Xeloda for home two weeks on one week off...in the meantime there were issues with his insurance more red tape and more nightmares...But that's not important.

    Things were going ok for a little while, he was able to manage for a few weeks, then i noticed he wasn't able to eat much at all, still managing fluids, up until this point he wasn't willing to drink the ensure or anything. His reasoning Im eating and drinking i don't need a "supplement" This is what i call his "superman complex".

    In just two weeks time I noticed the fluid intake was decreasing greatly, His weight is dropping significantly at this time he's lost a good 20 lbs. I started pleading with him to go back to the doctor, drink ensure, and of course he said "im fine" which i knew he wasn't.

    Now I've called the doctors and told them My dad's not doing well explained what was going on and they made an appt for him to come in the next day, So we sat in the waiting room I looked at my dad then and it was like at that moment i knew it was a turning point. He either had to join the fight for his life or the alternative which i wasn't willing to give him the option.

    They had a consultation *the team of doctors* and my dad and I. We sat there as Dr. Meyers his oncologist said to him Thomas the cancer is progressing it's time we set the wheels in motion. You have to get onboard with us or we can't help anymore. My dad finally agreed to start the ensure 4-5 times a day. His weight at this time is 143lbs...He was so dehydrated that they were worried about organ failure. He was told that he *my dad* had to come into the office every day that week for fluids* this was instead of going into the hospital which im not sure was such a good idea* So My dad got about 500ml of fluids each day last week, and we are scheduled to see Dr Greenwell tomorrow 5/18 for a consult on another espohagus stretching possible stent. The doctors have suspended my dad's chemo until after his espohagus is opened up so he can swallow the meds and food.

    So it seems to me we went from stomach cancer to stomach and espohagus cancer sometime between last march and novemeber. I feel so misinformed right now and frustrated.

    When we were in the office last week we got the results of his latest ct scan. and Dr meyers told me "you already know the results" they fear the cancer is "strangling" the esophagus.

    My question is this. When is it too late to get a second opinion.
  • Unknown
    Options

    I hate to say it but until i
    I hate to say it but until i joined this sight i thought i knew alot about my dad's cancer. Now I realize there is much more to learn.

    My Dad is 57 years young. He went into the hospital *emergency room* due to the pain in his leg..they found he had a blood clot, they treated him with blood thinners which included levenox in the stomach got that under control, did the normal blood tests that i was informed were routine in this. Prior to this my dad had not even been to a doctor is 20+ years. He had been healthy.

    The doctors found "abnormal "levels in his blood. So they started doing other tests. I was led to believe this was just "routine" due to the blood clot. Told he was lucky he came in this blood clot could have broke off traveled to his lungs, and killed him. I knew this of hearing about blood clots in the past.

    Anyway scans were done ect. A oncologist was brought in and it was like one of those commercials the doctor stood there at the foot of his bed and said Thomas you have Cancer...as we sat there I was stunned, couldn't formulate any words..and he was so stoic as was in his character he just said "OK" Now what?

    He said they needed to do more testing so here began our journey...it was Feb 17,2009 in the next three days we sat in this small hospital room in Louisville kentucky waiting to hear his fate.

    they did Ct scans which led to more answers they said but actually just brought many more questions.

    the doctors diagnosis Stomach Cancer Stage IV left kidney "involved" I still have so many questions. And so few answers .

    I asked about surgery they stated he wasn't a canidate for surgery..The type of cancer we are dealing with in the late stages we found it's incurable but treatable is what the doctors told us.

    I look back now i wish that we had gotten a second opinion.

    The treatment...

    The doctors started him on a chemotherapy.. i believe it was the FU 5 or 5 FU *i can't remember which one it is* did that for 4 rounds and repeated the ct scan and did PET scans. We were told he responded well to this therapy. At this time My dad was not all that sick from the looks of it. He was still eating not losing much weight. At the start of this My Dad weighed around 245 lbs.

    His team of doctors decided he was doing so well, they would give him a break from the chemo and see what the next scan told. *This i think now was the worst thing they could do* during this six weeks off, i noticed as soon as Dad would try to eat the hiccups would occur within 5 mins.. at first i thought nothing of it. Then the hiccups persisted so much it would cause him to not want to eat as much.

    Somehow through all of this I began really trying everything i knew to get him to eat more, i saw things starting to decline rapidly, and of course my family thought i was overreacting, somehow i became his caregiver, even though my mother *his wife* lives in the house as well, I was the one that focused on my dad, and his needs, urging him to eat, take his meds, and talk to his doctors of course my dad refused there was a problem *denial probably*

    Things got worse My dad started losing alot of weight. He started having trouble swallowing things progressed this way for several months until he all but quit eating. My dad started getting very weak. After much tension and many tears shed I finally put my foot down and got him to admit there was a problem. A few days later He finally agreed to go to the ER just to get checked out. He was dehydrated, malnurished they admitted him. And this is when we met Dr. Greenwell he performed a endoscopy stretched his esophagus and put in a feeding tube. Dad was released a day later.

    At the time of his release he was again able to eat and drink pretty freely. Dad was actually starting to gain some weight back at this time he was up around 185-190 lbs. November 2010

    I finally made an appt with my dad's oncologist for a "follow up" they ordered a ct scan. with the "berry flavored barium" It seems i had to fight my dad in every step to get him through these tests. anyway

    The test was performed and a week later we were sitting in the exam room being told things aren't looking as promising we need to start being more aggresive, A new Medication was prescribed..A chemo regimen... and Xeloda for home two weeks on one week off...in the meantime there were issues with his insurance more red tape and more nightmares...But that's not important.

    Things were going ok for a little while, he was able to manage for a few weeks, then i noticed he wasn't able to eat much at all, still managing fluids, up until this point he wasn't willing to drink the ensure or anything. His reasoning Im eating and drinking i don't need a "supplement" This is what i call his "superman complex".

    In just two weeks time I noticed the fluid intake was decreasing greatly, His weight is dropping significantly at this time he's lost a good 20 lbs. I started pleading with him to go back to the doctor, drink ensure, and of course he said "im fine" which i knew he wasn't.

    Now I've called the doctors and told them My dad's not doing well explained what was going on and they made an appt for him to come in the next day, So we sat in the waiting room I looked at my dad then and it was like at that moment i knew it was a turning point. He either had to join the fight for his life or the alternative which i wasn't willing to give him the option.

    They had a consultation *the team of doctors* and my dad and I. We sat there as Dr. Meyers his oncologist said to him Thomas the cancer is progressing it's time we set the wheels in motion. You have to get onboard with us or we can't help anymore. My dad finally agreed to start the ensure 4-5 times a day. His weight at this time is 143lbs...He was so dehydrated that they were worried about organ failure. He was told that he *my dad* had to come into the office every day that week for fluids* this was instead of going into the hospital which im not sure was such a good idea* So My dad got about 500ml of fluids each day last week, and we are scheduled to see Dr Greenwell tomorrow 5/18 for a consult on another espohagus stretching possible stent. The doctors have suspended my dad's chemo until after his espohagus is opened up so he can swallow the meds and food.

    So it seems to me we went from stomach cancer to stomach and espohagus cancer sometime between last march and novemeber. I feel so misinformed right now and frustrated.

    When we were in the office last week we got the results of his latest ct scan. and Dr meyers told me "you already know the results" they fear the cancer is "strangling" the esophagus.

    My question is this. When is it too late to get a second opinion.

    This comment has been removed by the Moderator