Diagnosed with Stage IV yesterday: advice needed

donnie126 · May 2011

Hi there,

My name is Don and I am a young 63 year old man who was just diagnosed with stage IV esophageal cancer yesterday. The cancer has metastasized to me liver and I have some shadows on my lungs. My symptoms started 6 weeks ago and I have lost 25 pounds (some of which I needed to anyway). I am waiting to get an appointment with an oncologist as my tumor is inoperable. My family and I are devastated but remaining positive. I have tapes, books and have been drinking lots of Ensure to stay strong.

I guess I am just hoping to hear other people’s stories and advice. We have an appointment with a radiation specialist on Wednesday and are awaiting oncologist appointments and chemo specialists. We want to fight this and I am determined to live the best life I can with what I now know.

We live in Toronto, Canada and will be getting treatment at Princess Margaret Hospital. I am having difficulty keeping weight on and am very weak. Are there any tricks to help? I have 4 lovely kids and one heck of strong willed wife, who will help me get through this. I am just looking for some more helping hands, positive words and some tricks of the trade.

Thank you in advance,

Don.

Unknown · May 2011

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Prismpunk · May 2011

Hi Don,
I am sorry that you
Hi Don,

I am sorry that you received this devastating news. I want you to remain strong and positive, but also be as optimistic as you can be. My own personal experience with this disease has been anything but positive, however. I live in NYC and My dad just passed away on April 16, 2011 at the age of 61 from Stage IVb Esophageal Cancer which metastasized to his Liver. He lived approximately 8.5 months with Stage IV from when he was first diagnosed. When my dad passed away he weighed about 90 lbs from his average weight of 175lbs a few months earlier. Losing weight is not uncommon with this disease. We tried Chemotherapy and Radiation neither of which worked on my dad. If I had more time and more expertise I would have tried every alternative treatment available. I would look into nutritional diets to see if they may reduce the spread of cancer cells. I would do everything to strengthen your body to fight this disease. I would look into revamping your entire diet and never give up hope. Your going to be facing the toughest battle of your life. The most inspirational thing I can think about....watch Jimmy Valvano's 1993 ESPY Awards Speech on Youtube. I would watch that video with my dad everyday and it gave us inspiration through our tough battle.

Jonathan

Unknown · May 2011

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Unknown · May 2011

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sangora · May 2011

Don the fight begins
I want to let you know that there are many others that are sitting or have sat in your seat recently. 13 months ago I recieved your exact same diagnosis. The biggest difference in our situation is that I lost 80 pounds by the time we knew the whole story and my tumor had completely blocked my esophagus. I too had involment in the Liver and Lungs. With much prayer and the support of many, I have been able to keep my spirits up and that is a major key. I had a three drug cocktail for 6 months, radiation and Xeloda last summer. This shrank the tumor that is now gone and the areas in the liver and lungs are clear. I had a feeding tube but am now able to eat. Its been a long and difficult journey and the journey continues. I know that there is no cure and that at some point the cancer will win. In the mean time I have the opportunity to live a fairly normal life. This week last year I was in a wheelchair to get to the bathroom and today I am on walking vacation. I am thankful for every hour and for the advances in treatment that we now have. I am actualy now on an oral medication that seems for now to be controlling my situation. I treat for 7 days and off 7 days. This is the first week that I have been brave enough to treat away from home but thankfully all seems smooth. You are facing an evil foe, but never give up. You and your loved ones will remain in my thoughts and prayers. If there is anything I can ever do to offrer moral support, let me know, we are the same age. Sam

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Unknown · May 2011

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donnie126 · May 2011

Thank you
Dear Sam,

Thank you so much for the wonderful support.
Your story brought my family to tears. We have been given minimal hope from the doctors we have seen so far. It is nice to hear some successful stories and yours is making us very hopeful. Thank you for sharing.

How do you deal with the weakness? That is my biggest problem right now. I have been a very productive working man for most of my life and now this has forced myself into an early retirement and I am frustrated with being able to do such a little amount.

The fact that you are on vacation right now gave such hope to me and my family. Thank you and know you will be in our thoughts and prayers.

Please keep in touch with any tips or advice.

Sincerely,

Don

donnie126 · May 2011

Thank you Sherri
Sherri,

I am so sorry to hear about Jim. You sound like an amazing woman, much like my wife. It means so much that you are continuing to support people like me through this tough time.

We have written down so many of your tips and my family made me first whey powder, fruit and ice cream smoothie yesterday and it went down like a charm. I even gained a pound when i weighed myself this morning.

I am trying to give myself small goals like gaining a pound before meeting with my radiation specialist on wednesday ( i might need to try 2 pounds now!). We are going to invest in some fish oil. I have been drinking 3 ensures a day and basically anything that will go down.

I am doing my research on therasphere and HER2 and we appreciate any tips that anyone else might have. Also, it appears that my hospital uses g-tubes rather than j-tubes. Are those okay too?

Thank you for sharing your story of inspiration. Reading about Jim has been wonderful for both me and my family.

Don

donnie126 · May 2011

Thank you Sherri
Sherri,

I am so sorry to hear about Jim. You sound like an amazing woman, much like my wife. It means so much that you are continuing to support people like me through this tough time.

We have written down so many of your tips and my family made me first whey powder, fruit and ice cream smoothie yesterday and it went down like a charm. I even gained a pound when i weighed myself this morning.

I am trying to give myself small goals like gaining a pound before meeting with my radiation specialist on wednesday ( i might need to try 2 pounds now!). We are going to invest in some fish oil. I have been drinking 3 ensures a day and basically anything that will go down.

I am doing my research on therasphere and HER2 and we appreciate any tips that anyone else might have. Also, it appears that my hospital uses g-tubes rather than j-tubes. Are those okay too?

Thank you for sharing your story of inspiration. Reading about Jim has been wonderful for both me and my family.

Don

donnie126 · May 2011

Thank you Jonathan
Jonathan,

I am so sorry to hear about your father. I know I have a hard road ahead, I am just trying to find the inner strength to help through all the bumps and tears ahead.

We have watched the video on youtube and we will continue to watch it as inspiration.
Thank you for sharing your story. Your father was very lucky to have a son like you.

Don

sangora · May 2011

donnie/fatigue
Don, for those of us that have always been very active the fatigue is a frustration. For decades I worked full time, traveled and owned a horse farm. Now I am retired as are you and have given up all but two of my horses and the dog. I have adopted the notion that a little fatigue is my "new normal". I get up at 6am and start my day. About 10 I'll lay down for an hour and read a book. After lunch I take a 2 hour break and then am up til bed time. These rest breaks have really helped. Also, I find it helpful in my head to pick one project a day that I really want to do, then get it done then take the rest of the day to enjoy what I was able to accomplish. Don't waste your time and energy trying to do what you did 5 years ago. Down size your to do list and take heart in the fact that you can do anything. When your treatments start, it is going to be frustrating because it will take all your energy just to take a shower. Tats ok, that is your activity for the day and know that once the treatment cycle is over you will feel better. Hang in there and know that attitude and hope is everything in our situation. I am returning home tomorrow and have had a fantastic week. Sam

cher76 · May 2011

Don,
My husband was also
Don,
My husband was also diagnosed with stage IV esophageal cancer in October of 2010, so I can understand exactly how you and your family are feeling. It has indeed been the roller coaster from hell. There will be many ups and downs along the way and you will need all of your faith, family and friends to help you get through it. When Rickie was diagnosed he was 54 years old and we had been married 34 years. I had just retired from 33 years of teaching to join him in our family furniture business, and my biggest concern was how we would get along working side by side every day. Those were the plans anyway. Little did I know what God had in store for us.Instead of working side by side deciding what sale to run and which furniture to buy at market, we have spent the last 7 months side by side, deciding which treatment to take,how to keep his weight, and battling this beast. We are working together for a much greater common goal! So far his cancer has metastisied to the bones, but now that has been resolved for the time. He has lost over 100 pounds, and has had great difficulty eating solid foods. He now weighs 145 pounds, something he has not since he was in elementary school! He is currently on Irinotechan and erbutux, now starting 1treatment every 3 weeks. We also have sought out advice on a feeding tube and all four of our Dr.. ( 2 at home, 2 at MDAnderson) have advised the PEG tube. Placement was unsuccessfully tried last week, and we will be returning next week for them to try placement again. As far as eating goes, Rickie has never been one to eat fruit and about the only veggies he likes are potatoes and corn, so this has been challenging. We have been using Jay Robb whey protein as it seems to taste the best and I mix it with peanut butter, chocolate syrup and almond milk along with nonfat powdered milk. This is his favorite. At the moment he is able to get some solids down due to the stretching from the failed tube placement, but don't know how long that will last.
We will keep you and your family in our prayers. This is a great site, you are among friends!
Cheryl

Daisylin · May 2011

Hi Don
Don, first of all, from a fellow Canadian..... (London On) you are fortunate to live in such a fantastic country. The cost of the medications and doctor visits would bankrupt anyone, and that is one thing no one needs when facing such a terrible disease. OHIP and work benefits have covered most of our costs, and the drug company Xeloda has covered the remainder. Keep that in mind if you are not covered for any of your drugs. Often, the drug companies will pick up the tab for your meds. All you have to do is call them, your doctor should be able to provide phone numbers.

My husband, who is 48 was diagnosed in February with stage iv esophageal and secondary liver cancer, with some 'abnormalities' in his lymph nodes. He began chemo and is now done 4 cycles and awaiting CT scans to find out where we stand. Chemo was his only option, he was not a candidate for surgery or radiation. Aside from the nasty chemo side effects, overall, it has not been too unpleasant. He is doing very well with his food intake, it seemed to get better after he started chemo. (I don't know if that is normal or not)

You have been given a lot of great ideas already, and I can't really add to them, but most importantly, try to be positive and maintain a sense of humour. Force yourself to eat and drink..... McDonalds milk shakes have a zillion calories, smoothies, pasta are all fairly easy to get down. I noticed that you were recommended to take vitamin c and antioxidants. Our oncologist and nutritionist strongly told us to stay away from those two things, as they coat the cells (including the nasty cancer cells) and won't let the chemo do it's job. You may want to ask your cancer team for their opinion.

Take care,
Chantal

sangora · May 2011

To Don and Daisylin
My oncologist also told me to stay away from antioxidant supplemenrts (actually supplements in general) as the Vit C not only does what Chantal was told but also causes the body to flush the drugs out too fast. My doctors have told me to take NOTHING they don't write a prescription for. I also adhere to the Cancer diet but not the week I am treating as the foods on the diet will interfere with the drug interaction. Sam

Unknown · May 2011

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Callaloo · May 2011

Don, you have a big battle ahead of you
But, having gone through it myself, I can say there is life after chemoradiation for stage IV EC. I am 14 months from diagnosis and I am living a normal life again. I am not cancer free, and still taking oral chemo, but I've gained back the 20+lbs I lost last year (and I started out at 115 lbs), I now eat and drink anything and everything I want, and in the past 9 months I've taken 4 vacations (3 week-long trips in 3 different states, and a 3-week trip to the Caribbean). I am enjoying myself, and intend to continue doing so for as long as I can. I have been blessed with good health, except for the cancer part...

I was fortunate in that I did not have an obstructed esophagus at diagnosis. So I spent 3 weeks before treatment started gorging myself on cream cheese/avocado omelettes, French fries and strawberry waffles with whipped cream. Good thing I did because I didn't eat much after the chemo and radiation started. It is good to get as many calories and protein in you as you can now -- forget the greens and vitamins for the time being, not enough calories. If you are not able to eat, then have the feeding tube done when you get your chemo port, or sooner.

Sherri's advice is right on. However, I was cautioned against using certain supplements while on chemo. But nothing says to avoid them at this stage. In fact, I take all kinds of supplements, including Chinese herbs you can't even find on the internet, whenever I'm off chemo, which currently is every 14 days.

Keep us advised. We all need each other's help here. And good luck. We are rooting for you hard.

Lu in Oregon

Callaloo · May 2011

Diagnosed with Stage IV yesterday: advice needed

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