Grandpa - 85 - Stage IV - post chemoradiation, entering chemo round 2

hopeforgrandpa

Hello everyone -

My grandpa, Norman, is 85 years young and was diagnosed with esophageal cancer last year at stage II. He underwent 7 weeks of chemoradiation and a subsequent PET scan showed he was cancer-free. A couple months later another PET scan showed that the cancer was back, but localized where the esophagus meets the stomach. My grandpa was told he could not receive any more radiation in the esophagus, but was a candidate for chemo.

He wanted to start immediately, but his doctor suggested waiting a month. A month later, another test showed that it has spread to both of his lungs (four small cancer cells were visible) and he is now stage IV. The doctor suggested putting off chemo for 1-5 months because "it will not make any difference" and since my grandpa is pain-free, and doing relatively well, the doctor's approach is basically that 'the cat has been let out of the bag' and it is just a matter of time before the cancer overcomes his body. He doesn't want to put my grandpa through unnecessary pain and wants him to 'enjoy his life' in the meantime.

Well, my grandpa is a fighter and the last thing he wants to do is to sit helpless and wait for the cancer to overcome his body. Thus, last week we went to the University of Chicago for a second opinion and met with a doctor who specializes in esophageal cancer. She said that once cancer has metastasized, the cancer becomes incurable, and there is not much they can do other than give him chemo in hopes of slowing the spread and treating the symptoms. The University of Chicago doctor talked to my grandpa's regular cancer doctor and suggested he start chemo right away.

His main cancer doctor will be administering the chemo beginning Tuesday (since it is a closer hospital than Univ. of Chicago), though he still advises against it. We are hopeful that the doctors are wrong and that the chemo will in fact kill the cancer cells, at least to the point where they are localized back in the esophagus and we can re-explore our treatment options. We are also praying that it does not make my grandpa sick.

He is doing great right now and has been fighting the cancer so far with humor and positivity. He is at a healthy weight of 197 thanks to a feeding tube. He has lost his appetite and ability to taste food, but he manages to get some food down every day such as steel-cut oatmeal and even a hamburger on good days. He only has pain when he hiccups or coughs, and thanks to a recent prescription is able to sleep through most of the night and be relatively active during the day with only a couple naps.

He is eager to start the chemotherapy, and is hopeful that it will help put this cancer in remission. He is currently a 10 year survivor of prostate cancer, and is hoping to overcome this cancer as well.

Is anyone out there a STAGE IV cancer survivor?
Is anyone out there over 80 and a esophageal cancer survivor?
Has anyone over 80 had the surgery (min. invasive or otherwise)?
Has anyone had more than one radiation treatment session on their esophagus?

Interested in giving my grandpa some stories that will inspire him and incite hope.

Much love, Jennifer

oriontj

I think your U of C oncologist is the same one who treats
my husband.

Dr. Villifor(e)...is that the specialist? At this time last year, he was diagnosed at the U of C with Stage IV ec and one lymph node affected in the area of his clavical. He had the chance to be in a clinical trial and took the chance and was in the arm with the experimental drug for EC Erbitux. It was radiation every day for 6 weeks, 3 chemo drugs every Wed and hydration on Thursday and Friday. So far he has had clear check ups..That doesn't mean he is a survivor by any means...but after he finished the chemo and radiation which is a one time thing in the areas he received it...we have been to Las Vegas and to Alaska and to Maine this summer.

I don't know how long he will be clear..only the Man upstairs knows that.

But if it's the same doctor, she is truly exceptional. They may be able to keep it from spreading for your grandfather. He did all his treatments at the U of C but we are close..and the South Shore runs right to a stop and a hospital bus goes the rest of the way or it is a 40 minute drive max. They have some excellent doctors at the U of C.

I sincerely hope that your grandfather gets good positive results.

If I can help answer any other questions ask or email...I'll sure help if I can.

orion

hopeforgrandpa

oriontj said:

I think your U of C oncologist is the same one who treats
my husband.

Dr. Villifor(e)...is that the specialist? At this time last year, he was diagnosed at the U of C with Stage IV ec and one lymph node affected in the area of his clavical. He had the chance to be in a clinical trial and took the chance and was in the arm with the experimental drug for EC Erbitux. It was radiation every day for 6 weeks, 3 chemo drugs every Wed and hydration on Thursday and Friday. So far he has had clear check ups..That doesn't mean he is a survivor by any means...but after he finished the chemo and radiation which is a one time thing in the areas he received it...we have been to Las Vegas and to Alaska and to Maine this summer.

I don't know how long he will be clear..only the Man upstairs knows that.

But if it's the same doctor, she is truly exceptional. They may be able to keep it from spreading for your grandfather. He did all his treatments at the U of C but we are close..and the South Shore runs right to a stop and a hospital bus goes the rest of the way or it is a 40 minute drive max. They have some excellent doctors at the U of C.

I sincerely hope that your grandfather gets good positive results.

If I can help answer any other questions ask or email...I'll sure help if I can.

orion

Hi Orion,
Yes, Dr.
Hi Orion,

Yes, Dr. Villaflore is the doctor my grandpa saw, and she was wonderful. I wish he would have gotten to her sooner, though. At his age he doesn't qualify for the experimental treatments, and has already received his limit on radiation. She prescribed chemo which he will start taking next week.

This cancer is an aggressive one - but we are praying the chemo will keep it at bay. My grandpa is doing wonderful right now all things considered and his spirits are high.

I will pray for your husband that he continues to stay in the clear.

Best, Jen

unclaw2002

Jennifer,My dad is 78 years
Jennifer,

My dad is 78 years young and was in good health when he was diagnosed stage III, T3,N2,MO last December. He was very active and got out of the house everyday and had many interests and activities. He had had digestive, swallowing problems for the last few years prior to his diagnosis but the doctors had dismissed his complaints, even did a pill camera for a stomach emptying test but no one thought to check out his esophagous and told him to chew his food better.

Anyway, last Febraury he started a 2 chemo regime of Carboplatin and Taxol. My dad is a type II diabetic and had high blood pressure both controlled by drugs so the doctors were concerned about his kidneys and heart. They said 3 agents was the preferred regime but they were afraid that would kill my dad. After 2 cycles of chemo he also had 32 radiation treatments to shrink the tumor.

Now my father is stubborn and certain things occured that have compromised his treatment and hopefully will be a lesson for your grandfather.

1. My dad didn't want to get a j-tube when he had his port inserted. He didn't want anything to do with a feeding tube (I think he had some picture in his head of nursing homes and my grandmother when she died) anyway he decided a stent to open up his esophagous would be fine. GET A FEEDING TUBE FROM THE BEGINNING IT CAN BE A LIFESAVER. "Pride goes before the fall." and it isn't worth it.

2. I tried to encourage him to get hydration before and after his chemo treatments --- he said he didn't need it he would drink enough water to stay hydrated and was I crazy to want to add a couple of extra hours in that chemo suite --- no way. Well big mistake ... MAKE SURE HE STAYS HYDRATED.

3. He had the stent which allowed him to eat again --- however, it was painful and caused spasms sometimes when food hit the stent and the truth was he didn't eat enough, drink enough or get enough nutrition. NUTRITION + HYDRATION is ESSENTIAL TO STAYING STRONG ENOUGH TO COMPLETE THE TREATMENTS.

4. The stent fell into his stomach in April and he became so badly dehydrated that he was admitted to the hospital for several weeks to remove the stent and replace it. At the time his tumor has shrunk so much the stent fell good news - bad news the hospital stay and making him weak. More bad news still no J-tube. HYDRATION NUTRITION . . . .

5. In mid may with the continuing radiation the stent fell into my dad's stomach again, he became dehydrated and then there was a delay in surgery and he almost died. Finally they inserted a J-tube --- but by this point my dad was totally debilitated and stayed in the hospital until the end of June (almost 2 months) and was released with a wheel chair. walker and cane. Indeed when the doctor in NY saw my dad in August she was taken aback and said he was really fragile. Never thought I would hear that description of my dad. HYDRATION, NUTRITION and STAY MOBILE exercise and walk on your own power.

6. New scan done and now he is no longer a surgical candidate because he has mets to the liver.

7. Undergoing a new round of chemo to attack the tumors in the liver.

My dad has a great attitute and has regained much of his strength. He now is no longer using the wheelchair, his walker or cane. He hasn't started driving again yet --- but was driving up to his last hospital admission and intends to drive again in the next month. He is able to eat most everything again. He eats 6 small meals a day, which includes a couple of cans of glucerna. He doesn't drink anything with his meals. He doesn't eat the last couple of hours before he goes to bed and props himself up when he sleeps.

He still enjoys a good strong cup of coffee. One side effect of chemo he no longer has high blood pressure:) He does have to watch his white blood count and we are always trying to get him to eat to bulk up and get out and exercise and drink. He is engaged and even when he gets sick from the chemo he says that it will pass and is making him better and attacking the tumor.

I look at every day as a gift. When he called me in December to tell me he had cancer I couldn't believe it I had always thought my dad would live well into his 90's and pass away in his sleep one day ---- I never saw this battle. Indeed we always thought he would well outlive my mom. Guess the good Lord has different plans.

Your grandfather is a statistic of one. His attitude and his health and his makeup will be a big part in deciding how he does. Noone can guess how long anyone has --- my dad says he doesn't want to go, he isn't ready, he has too many projects to finish so he isn't ready to die. I think my dad's attitude has gotten him through so far. Another person on this site said that the ACS says that every cancer patient is a survivor every day they live after their diagonsis. So my dad was diagnosed December 23, 2009 --- he just passed his 6 month mark --- and we are hoping that there are many more days we will be blessed with.

If you have any questions email me on the site I will be happy to email or speak with you.

Good luck to your grandfather,

Best,
Cindy