stage IV and into our fourth year

Mary Pat

Hello everyone,
I have not been posting but have visited this wonderful site many times. I have also gained additional information here that has helped when visiting with our oncologist. Rick was DX in Oct 2008 with stage IV with mets tom the liver. Surgery was dismissed. Four rounds of the three part chemo cocktail followed with tremendous results. ood enough formthe surgeon to agree to surgery. well, twonhours into the procedure startingnwith an lapriscopic exam of all the organs and esophagus and they discovered two cancerous lymph nodes next to the esophagus too close too themlung to remove and therefore aborted the surgery. Both a CT and PET scan missed these nodes!!
that wasnin March 2009. Two more rounds ofmthe "cocktail" and then 6weeks of radiation followed. No sign of cancer from July 2009 until February 2011. Again the CT scan showed everything clear but Rick thought there was something "down there". An endoscopy found two tumors and a lymph node. wow! Here we go again. Several months of a different chemo with nasty side effects tooknus to June 2011. He took a short break to regain his strength and then went onto xeloda for the next 5 months. Life was pretty normal, riding horses, bird hunting, etc. New scope in early December found tumor had grown 25% so they dilated the area and stopped the xeloda and started new chemo.
there has been no evidence of mets anywhere since the original DX. Liver continues to be clear. He will finish a new 4week radiation this Wednesday and finally come home (we live five hours from Seattle). Not sure what comes next. the poor guy is really showing the effects of this terrible fight now. Hard to believe he was walking many miles pheasant hunting wi our son for 8 days last November.
I am sharing our journey for all of you with stage IV. You can survive and live an active fulfilling life with EC but always remembering that you must live in the present and thank God for every days. as my husband will say "every one is going to die we just don't know how or when". He is very peaceful about his future. It is myself and our children who need to follow his example. Not always easy, right?
Hopefully this history will provide some hope and peace for those out there facing this terrible EC diagnoses. Have faith in God and live for right now.
Love and peace to you all.
Mary Pat

Proactive Daughter

Very Inspirational!
Hi Mary Pat,

It was so nice to read your husbands story. I often feel defeated by my dads recent diagnosis of Stage IV. Stories like this give me hope that we may be able to buy more time with him.

Thanks again, I hope your husband continues to enjoy many more memorable years.

Sincerely,

Jennifer

Unknown

This comment has been removed by the Moderator

Wpturner05

Thank You
Thank You Mary Pat for that story. I am so happy to hear of stage IVs with the gift of time. I can only imagine that this fight going into 4 years is just exhausting. Thank You for sharing.

Sincerely,
Whitney

sangora

Wpturner05 said:

Thank You
Thank You Mary Pat for that story. I am so happy to hear of stage IVs with the gift of time. I can only imagine that this fight going into 4 years is just exhausting. Thank You for sharing.

Sincerely,
Whitney

Thank You
I appreciate your post tremendously. I am a stage IV and am nearing my 2 year celebration of life. Like your husband, I am treating steadily and am stable. So many IV's lose the battle within the first year that it gives me hope to realize that there are IV's who can keep on marching for a longer time. I know there are others who have made it longer as IV's and I really wish we could hear more from them. It gives the rest of us hope. You have made my day, Sam Stage IV.

Mary Pat

unknown said:

This comment has been removed by the Moderator

More information
hello William,
I will try and fill in the blanks regarding Rick's Meds. First, I want to thank you for your love and support coupled with an incredible supply of information that you share with so many on this site. You have most certainly found your calling and we are all better for it.
Ba k in 2008 Rick started with the combo of epuribicin, oxaliplatin and xeloda every three weeks. After two rounds the lymph nodes and the lesion in the liver were gone. After four rounds the primary tumor in the lower esophagus was reduced about 80%. He had acutally gained weight and was in good health eating well. Actually he had no symptoms after the original "choking" incident that had me sending him straight to the local doc.
Because the lymph nodes were gone, liver lesion was gone, tumor much reduced and he was in great shape our surgeon, Carlos Pellegrini, from the UW offered to do a lapriscopic, hietal, esophagectomy. That was when they found two undetected limp nodes and opted to abort. these nodes were outside of the esophagus next to the lung and could not be excised out.
Two new rounds with same Meds followed by 6 weeks of radiation ending June 15, 2009. NED until February 2011. This time his. chemo was Taxol and cisplatin. WBC was a big problem. Daily belly shots of neupragen shots which was incredibly hard on the poor man. these shots meant a daily RT drive of two hours which added to the stress. Finally by the end of May our primary onc, Tpny Back, thoughtnhe should take a break and go back to xeloda only. all was well until December 2011.
this Wedneday he will have his 20th radiation. Based on some good info here on this board I asked Tony at a meeting about attacking just the primary site with some kind of targeted radiation. There is no sign of cancer anywhere else except down at the gastric opening. they are radiation there and on into the stomach since it appears to be moving that way.
I hope this fills in the blanks. Yesterday Rick said he hopes he is strong enough to climb aboard Annie (his Missouri fox trotter mare). I told him I can get him up and then all he has to do is hold on, no worries.
On a sad note, Rick's wired haired pointing griffon, Danny, had to be put down today due to cancer and he wasn't here to say goodbye to "his boy",
this event was totally unexpected and very sad to loose a 7year old. It is hard to understand why these things happen.
Enough rambling for now. I pray my story gives the Stage IV sufferers and their caregivers some hope and encouragement.
Thank you again, William
Mary Pat

AngieD

sangora said:

Thank You
I appreciate your post tremendously. I am a stage IV and am nearing my 2 year celebration of life. Like your husband, I am treating steadily and am stable. So many IV's lose the battle within the first year that it gives me hope to realize that there are IV's who can keep on marching for a longer time. I know there are others who have made it longer as IV's and I really wish we could hear more from them. It gives the rest of us hope. You have made my day, Sam Stage IV.

Hi, Mary Pat,
We've emailed,
Hi, Mary Pat,
We've emailed, but I just wanted to agree with Sam and thank you again for sharing your story. We all say "one day at at time" and "everyone is a statistic of one", but reminders that this truly does apply to Stage IV's also is very welcome.
Angie, wife of Larry DX Stage IV 6/21/11

GerryS

Motivating and inspiring...........
Thank you for this message. We all really needed it. God Bless......

Gerry

ABC321

Fantastic news
Hi Mary Pat,
I just wanted to say what a delight it is to read this....unlike others on this site that seem to go to great pains to spell out (on very possible occasion) how terminal this disease is, it's lovely to hear about a long term survivor. Here's to many more years to come.
steve

TerryV

Thank you for sharing, Mary Pat
It is SO encouraging to hear Rick's story. Positive stories of any stage are appreciated, but more so when it's a Stage 4 that's having the good day, good month, good year, and etc...

Hoping that Rick continues to beat the odds. Please know - we are grateful for your triumphs! Makes our hearts lighter to hear something good in the EC battle.

Love & Hugs,

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads / 2 weeks inpatient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

sallijayne

dad newly diagnosed stage 4 e.c.
Thank you all for posting your stories and all the info!My dad is 68 yrs old never smoker or drinker,always in almost perfect health,he was diagnosed about 1 month ago.His primary tumor is in the lower esophagus right above the top of his stomach.Hard to believe he had no symptoms at all until about 7 weeks ago.He began to have colicky pain in his ruq of his abdomen radiating to his right shoulder and his back.No heartburn,but he was having trouble with food getting hung on the way down.Saw a gi dr. had egd done,large tumor in lower part of esophagus.Subsequent ct scan showed multiple mets in liver and several lymph nodes in abdomen.He has gone from having only the colicky and radiating pain and some nausea with eating,to having severe ruq pain and now some pain in his luq too.As I write he is probably undergoing his first chemo treatment.They have advised that he is currently not a surgical candidate and no radiation at this time.They say that how he responds to chemo depends on whether or not they will employ the radiation.They put a feeding tube in last week as he had lost about 20lbs already due to the pain and vomitting he had.So at least that can aid in his nutritional status.He has a good day here and a bad day there,the hardest part to me is knowing that until 2 weeks ago this man was in the gym several days per week,and before this happenedhad NO health problems.Now here he has been slammed with this awful mess! It is just crazy how this can happen isn't it?I am not sure what all of his chemo regimen consists of I am in tennessee and they are in Arkansas and I have yet to personally speak with any of his drs.I do not want to jump in and start meddling too much,my aunt(his sister) lives in the same town with him and she is a hospice nurse and has been helping them navigate the feeding tube and some of his new meds and I know she will be great for advocating for him when needed.Her daughter is also there and a nurse who has taken care of many chemo/rad patients also.So I know they definitely have good help at their disposal.I am also a nurse but I am the pediatric/fam practice w/ a history of med/surg and cardiac variety not very well versed in the oncology realm,but I reckon it is time to familiarize as much as I can.Neither my dad or stepmom are medically inclined in any way,I know they feel pretty lost and overwhelmed at this point,but they are hanging in there.Best I can gather, he is taking xeloda by mouth and i think 3 drugs i.v. starting today,1/week x 3 to start with.My stepmom mentioned they are putting his antiemetic in his i.v. so hopefully that will ease some of that aspect. Any pointers or ideas or anything you want to share that you have found to be helpful is more than welcomed.We lost my mom to renal cell carcinoma 21yrs ago,but that was a totally different ballgame,she never had chemo only radiation.

Proactive Daughter

sallijayne said:

dad newly diagnosed stage 4 e.c.
Thank you all for posting your stories and all the info!My dad is 68 yrs old never smoker or drinker,always in almost perfect health,he was diagnosed about 1 month ago.His primary tumor is in the lower esophagus right above the top of his stomach.Hard to believe he had no symptoms at all until about 7 weeks ago.He began to have colicky pain in his ruq of his abdomen radiating to his right shoulder and his back.No heartburn,but he was having trouble with food getting hung on the way down.Saw a gi dr. had egd done,large tumor in lower part of esophagus.Subsequent ct scan showed multiple mets in liver and several lymph nodes in abdomen.He has gone from having only the colicky and radiating pain and some nausea with eating,to having severe ruq pain and now some pain in his luq too.As I write he is probably undergoing his first chemo treatment.They have advised that he is currently not a surgical candidate and no radiation at this time.They say that how he responds to chemo depends on whether or not they will employ the radiation.They put a feeding tube in last week as he had lost about 20lbs already due to the pain and vomitting he had.So at least that can aid in his nutritional status.He has a good day here and a bad day there,the hardest part to me is knowing that until 2 weeks ago this man was in the gym several days per week,and before this happenedhad NO health problems.Now here he has been slammed with this awful mess! It is just crazy how this can happen isn't it?I am not sure what all of his chemo regimen consists of I am in tennessee and they are in Arkansas and I have yet to personally speak with any of his drs.I do not want to jump in and start meddling too much,my aunt(his sister) lives in the same town with him and she is a hospice nurse and has been helping them navigate the feeding tube and some of his new meds and I know she will be great for advocating for him when needed.Her daughter is also there and a nurse who has taken care of many chemo/rad patients also.So I know they definitely have good help at their disposal.I am also a nurse but I am the pediatric/fam practice w/ a history of med/surg and cardiac variety not very well versed in the oncology realm,but I reckon it is time to familiarize as much as I can.Neither my dad or stepmom are medically inclined in any way,I know they feel pretty lost and overwhelmed at this point,but they are hanging in there.Best I can gather, he is taking xeloda by mouth and i think 3 drugs i.v. starting today,1/week x 3 to start with.My stepmom mentioned they are putting his antiemetic in his i.v. so hopefully that will ease some of that aspect. Any pointers or ideas or anything you want to share that you have found to be helpful is more than welcomed.We lost my mom to renal cell carcinoma 21yrs ago,but that was a totally different ballgame,she never had chemo only radiation.

Your story is Oh So familiar
Hi Sallijayne,

I most definetly relate to your story. Sounds alot like my dad. He was in great shape, 62 years old, very active, just retired...loving life. Then, out of no where he had a hard time swallowing. That was early November. On Dec. 1st he was diagnosed with EC. We were devastated. My sisters and I chat daily on the phone about our dad and we are still shaking our heads in disbelief that this is all happening. It snuck up on us and we never saw it coming.

It sounds like your dad has a knowledgable support system. I can't offer you any help as I am here to learn, but I can tell you that you have come to the right place. So many people who are caregivers to people with EC, or who have EC themselves here to help.

Hang in there girl. It's a rough road, but we're here for you,
Sincerely,

Jennifer

TerryV

sallijayne said:

dad newly diagnosed stage 4 e.c.
Thank you all for posting your stories and all the info!My dad is 68 yrs old never smoker or drinker,always in almost perfect health,he was diagnosed about 1 month ago.His primary tumor is in the lower esophagus right above the top of his stomach.Hard to believe he had no symptoms at all until about 7 weeks ago.He began to have colicky pain in his ruq of his abdomen radiating to his right shoulder and his back.No heartburn,but he was having trouble with food getting hung on the way down.Saw a gi dr. had egd done,large tumor in lower part of esophagus.Subsequent ct scan showed multiple mets in liver and several lymph nodes in abdomen.He has gone from having only the colicky and radiating pain and some nausea with eating,to having severe ruq pain and now some pain in his luq too.As I write he is probably undergoing his first chemo treatment.They have advised that he is currently not a surgical candidate and no radiation at this time.They say that how he responds to chemo depends on whether or not they will employ the radiation.They put a feeding tube in last week as he had lost about 20lbs already due to the pain and vomitting he had.So at least that can aid in his nutritional status.He has a good day here and a bad day there,the hardest part to me is knowing that until 2 weeks ago this man was in the gym several days per week,and before this happenedhad NO health problems.Now here he has been slammed with this awful mess! It is just crazy how this can happen isn't it?I am not sure what all of his chemo regimen consists of I am in tennessee and they are in Arkansas and I have yet to personally speak with any of his drs.I do not want to jump in and start meddling too much,my aunt(his sister) lives in the same town with him and she is a hospice nurse and has been helping them navigate the feeding tube and some of his new meds and I know she will be great for advocating for him when needed.Her daughter is also there and a nurse who has taken care of many chemo/rad patients also.So I know they definitely have good help at their disposal.I am also a nurse but I am the pediatric/fam practice w/ a history of med/surg and cardiac variety not very well versed in the oncology realm,but I reckon it is time to familiarize as much as I can.Neither my dad or stepmom are medically inclined in any way,I know they feel pretty lost and overwhelmed at this point,but they are hanging in there.Best I can gather, he is taking xeloda by mouth and i think 3 drugs i.v. starting today,1/week x 3 to start with.My stepmom mentioned they are putting his antiemetic in his i.v. so hopefully that will ease some of that aspect. Any pointers or ideas or anything you want to share that you have found to be helpful is more than welcomed.We lost my mom to renal cell carcinoma 21yrs ago,but that was a totally different ballgame,she never had chemo only radiation.

Oh my....
So sorry to have to welcome you to an EC forum, but you have landed on one of the most well informed, compassionate, caring sites on the Internet.

I would recommend that you copy your post above into a brand new post all your own. Others here will want to comment and add input. I know there will be many with questions. We aren't trying to be snoopy, but only trying to find out enough to help you and your family member.

Could you please tell us what hospital or cancer center your dad is using?

Do you know who his doctor's are?

If you might include this information in your new thread, it would be appreciated.

Love & Hugs to you all.

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 Rads / 2 weeks in-patient Cisplatin & 5FU
THE 09/08/11
Clean Path 09/13/11

JaneO

Thanks!
It is always nice to hear some positive news when one is dx at Stage IV. Jack was diagnosed in July 2011 at age 51 and has responded well to treatments. We should find out next month if the radiation/chemo helped some more. We are realistic, but hopeful that he can withstand the treatments and have positive results. It helps to hear these stories and think maybe he can stay active and enjoy life when he is feeling well.
Jane