Sharing my Stage 3 journey

Craig48

I posted the following in response to another thread but since there are those that my not see that thread I will repost on a thread of my own and try to comment to those just starting this journey.

I think the best that I can contribute is to tell my battle with Stomach Cancer and let you pick what information is helpful to you. My wife was a great help to me during my battle with Stomach Cancer is the first thing I can share.

Dr Google and the internet are not to be viewed as superior to your Oncologist.

I was diagnosed with Stage 3B Stomach Cancer in July of 2019 with a 2" x 1 1/4" fully adhered tumor in my stomach. At the time I was living in the Phoenix valley and went to an oncologist. I was an active healthy 70 year old who had good health otherwise and recent anemia leading to shortness of breath was the only thing that allowed me to discover this cancer.

My Oncologist had further diagnostic detail done and I was told that my treatment would be in 3 stages.

First I would have strong chemo in a four chemical cocktail called F.L.O.T. for the generic names of the chemo drugs and these would be administered by a port surgically implanted in my upper chest. I would get three of these chemicals during a four to six hour infusion bi-weekly with the day to end being sent home with a pump to inject chemo number four overnight and the pump removed the next day with hydration to follow up. My Doctor explained to me that there were going to be strong side effects but I was encouraged to decide how strong I wanted the formula. I told him to hit me with the strongest he thought I could tolerate and after the first series we even upped that by 10%. Over the next two months I was very sick with side effects which of course lasted beyond the infusion period.

Second, they planned to remove my stomach and nearby related lymph nodes. They had done ortho-scopic surgery to see if the adhered tumor had roots going beyond the stomach into the abdominal cavity and elsewhere and it did not. The stomach removal would have proceeded the same if the answer was different. I was fortunate to draw the Chief Oncological Surgeon at MD Anderson in Gilbert, Arizona who a great surgeon. My side effects required two months for me to rebuild my strength and be ready for surgery. I had some unusual and heretofore unknown cardiac irregularities which settled out after a week of concern. My total Gastrectomy was done and I was out of the hospital in six days. This is a serious surgery with risks for any age. The surgery went well and 15 lymph nodes were also removed but not my nearby spleen which was inspected and found uninfected. I received what was termed a Path C/R which I was told means a pathological complete response to the strong chemo which had given me a lot of suffering. The tumor wasn't' just dead -- it was gone leaving only a scar on the wall of my removed stomach and all 15 lymph nodes showed no sign of cancer.

Third it was planned that I have more FLOT but my side effects included dead nerves in my hands and feet with strong neuropathy and it was feared that my ability to walk and manual dexterity made repeated FLOT too dangerous so I took oral tablet chemo with even that being reduced in strength as it made all the skin peal off my hands and feet as well as other digestive problems. This combined with stomach removal caused me to loose over 80 pounds (220 at diagnosis) which took me from 6'1 209 pounds after surgery down to 133 pounds.

I then was given followup scans, Physical therapy for dexterity, and finished out 2020 learning how to eat without a stomach and hoping to regain some weight. Now one New Years day 2023, I am back up to 150 pounds, have moved across the country to be closer to family, 74 years of age doing yard work on 3/4 of an acre. It has been 2 years and 7 months since I rang the bell in my Oncologist's office at the followup to step three second round chemo pills and post CAT scan. It is also 3.5 years since my diagnosis.

Due to sudden weight loss I have had gall stone, kidney stone and liver duct stone issues but these have mostly passed with time and keeping fluid level up and eating smaller meals.

I offer only the following advice:

A. Take the direction of your Oncologist for your specific case but also ask a lot of "what about.." questions.

B. Take the strongest Chemo you can endure. I cannot over stress how important this is.

C. Pray to God and be serious about it daily.

D. Share your innermost feelings and sufferings honestly.

E. Expect this battle to be tough but do not be defeatist or weak. Despite times of despair, saddle-up and get back on the horse if for nothing but those you love.

F. Give thanks that you can share this time with your family as people that die of cardiac problems, brain tumors and other causes get no time to settle loose ends and share their love and affection with their family.

Craig48

I guess I will do an update as it is six months down the road and I am about to hit the fourth anniversary of my diagnosis.

As a kid I was a Mess Sgt in the Army so I have always enjoyed cooking. As eating is more difficult, it helps that I can cook a variety of items to supplement and work around issues but the fun has gone out of exotic food and big meals -- I miss that.

Having a routine with bowel movements is something I miss as well. It changes every ten days now. Very tiresome and impacts restful sleep.

Dead nerves in my hands and feet are tiresome as well. Not really painful just constant and effect my dexterity.

I guess I am fortunate to be able to talk about irritations rather than dread the bigger battles.

Give me a holler if you have things working on you. I can't find too many to drive to chemo although I volunteer with all I see as does my wife on my behalf.

Craig48

Follow up at the end of July '23.

Just had a Contrast Dye CT scan and no tumors or suspicious items -- just some gall stone issues which is typical for rapid weight loss.

Craig48

I will add two more things.

My wife and I now provide some of the transportation for a lady going for radiation treatments. I enjoy providing this support.

I have come to the conclusion that strong chemo is now sometimes so effective that it may provide great results even when some years back it was more an incremental treatment.

Marinatango_960

Thank you for posting your journey!