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My fiance is Stage 4 EC met to liver...

peachylikeme's picture
peachylikeme
Posts: 3
Joined: Feb 2011

My fiance has Stage 4 met to his liver (two lesions 2cm each). Esophagectomy 4/2009, also due to familial polyps had a 80% colectomy 2/2010 and misc pancreatic area biopsies of polyps 11/2010 and diagnosed stage 4 right before Christmas with a prognosis of 3-5 years. To this day he is 6' and 130lbs. He is on 3 types of chemo, a strong push, an IV and Xeloda pills. Side effects are bad the first week but lessen as the weeks span. The oncologist had stated that there was a gross mistake as he was never given chemo before his esophagectomy so it will cost him extra precious life time. His spirits are high and to keep his spirit high our family has a special saying of "Wish 10" where we lock hands an wish for ten more years with him. We have looked online extensively looking for longer term survivors... We are hoping to find them here.

peachylikeme's picture
peachylikeme
Posts: 3
Joined: Feb 2011

My name is Marcy,my fiance is Rich(43)and he is a Stage IV EC Patient with mets to his liver. October 2008, my fiance went in for his forty year check as his family is known for familial polyps. Since his father's side is filled with polyps and his mother's side has Barrett's esophagus(He happens to be the middle son of three boys).

So he went for his colonoscopy first; then finding out that he was polluted with polyps and needing a surgery. All of these tests were done by GI specialists. Due to the polyps, the doctors insisted upon him also having an endoscope. When they went down for his endoscope they noticed a what they thought was a large polyp at his GE junction. So they pulled in a second specialist who look core samples of this so called polyp. All these tests span over a few months and by Jan 2009 he was diagnosed with cancer. The GI specialists had insisted upon seeing a thorasic surgeon and a colon specialist. Thorasics insisted upon before it kills him to remove it and pull his stomach up. The colon doctor said for us to wait until after six months of healing of the esophagectomy for the colonoscopy. Doing all of this beside his parents who we thought knew what they were doing as his father has had severe medical problems, we didn't question.

On 4/3/2009 his esophagus was removed;during the first weeks he did have a Jtube that almost never was used, except for flushing. After the surgery almost 2 months later we were sent to our now oncologist. Everyone in our area was confused of the protocol since the surgeon messed it up by doing surgery first. The oncologist called New York and followed with recommended treatment.The radio-oncologist in our area refused him service. So by July 09 Rich had 2 ports put into his chest(the first didn't work) so finally they started chemo on him and sent him to Hillman Cancer clinic for his radiation, for his oncologist wouldn't have it any other way! He wanted to ensure it correct. The original radiation zone had been stretched due to surgery so they didn't expect it would do as good, but he had done radiation daily for 6 weeks. November 2009-July 2010 the cancer had gone.

On 2/1/2010 Rich had his colectomy due to the polyps that could turn to cancer. After all of the healing from that they expected in the fall to do the final needed surgery on his polyps in which was in the ducts and area of his pancreas.(Sort of like a mini Whipple)That "mini" Whipple was done November 2010.

In July his PET scan showed .05 on the reading so they doctor wasn't alarmed. In October it had shown .20 on the reading and by December he was up to .67 on his PET reading. So as a special Christmas gift for us, on December 15 Rich was again diagnosed with Cancer, Stage IV EC mets to his liver. December 22, 2010 started Epirubicin(Push),Oxaliplatin(IV)and Xeloda(Pills). Now coming up on his third treatment tomorrow morning. He has been handling this treatment very well. Normally on chemo he is weak and his levels of everything drop. Not on this, his levels are very well and he hasn't needed any extra medicines to counter his effects at all! It has been amazing!

Our wedding is in August and we hope he can stay totally stable through then. His oncologist said we should expect eventually he will be disabled, and upon request the doctor will do so. At this time, we look at him working as something keeping him healthy so we push for him to continue as long as he feels it will do best for him.

We so appreciate any input we can get. Also hope this clarifies things a little better. His final diagnosis(as this was tested) is Stage IV EC mets to liver at the present with a prognosis of 3 years possibly 5 max.

peachylikeme's picture
peachylikeme
Posts: 3
Joined: Feb 2011

The third treatment was today. Rich is excited as his "cancer" level was 67 in December and the doc said via his blood work today that it is down to 14? However, a PET scan will give the better view of it so that will be for the next treatment in 3 weeks. So looks like these treatments are working, I am still staying prepared for the next hit. Thanks for all your kind words and support in this.

Oh and yes, Rich was cut from his chest to him groin as they cut chest to belly for esophagectomy, and belly to groin for colectomy. He had tons of drain tubes and a Jtube in him for a month. He had his surgery done at AGH by their *Thoracic* department.

I swear that everyone in his family now believe they are doctors and try to "offer" us all the new cancer options available. However, I feel his oncologist is such a good Doctor that I would rather follow as he would like and IF he recommends further operations then fine. We kinda fear more opening than needed as my aunt died of pancreatic cancer and they had mentioned that the more "air" that gets inside the body from opening it up, the faster cancer can use it to travel. No we haven't asked the doc about this, its a comment we have heard recently. We so appreciate all your input and are eternally grateful with the knowledge that you're a 8 year survivor!

That being said, we now have more piece of mind on Rich's survival rate. Thank you!

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