Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

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Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by JeniD on Sun Jan 17, 2016 07:47 AM

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Hello everybody! First and foremost, I would like to say that this message board is amazing. Words cannot express how strong each and every one of you are (survivors, battlers and caretakers). I stumbled upon this website while scouring the Internet. I've been obsessively researching Esophageal Cancer, treatments, statistics, survivors and miracle stories (so much so, that my dad's oncologist thought I was a nurse)! My father (51) was diagnosed with stage 4 Esophageal Cancer (adenocarcinoma) with mets to his liver, shoulder and hip in October 2015. He had 10 radiation treatments in November and has just started his first round of chemotherapy. His chemo consists of Cisplatin IV once every 21 days and Xeloda (Capcitabine) orally for 14 days with 1 week off. Anywho, I am not naive by no means nor am I in denial, but I am using Faith and Positivity to cope. Is there anybody out there with positive, encouraging stories to share? Thanks, Jeni

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by Bond007 on Sat Jan 23, 2016 04:10 PM

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Hi Jeni ....my husband Rick was dianosed Oct 1st 2015 he has andecarcinoma herv2 negitive he is stage 4 as well because after CT and PET scan they would cancer in Lympe nodes in his abdomen which is the reason they stage him at 4....which the sound of stage 4 scared us very much but he is so positive and what's to beat this. The surgeon will not operate with mets to the abdomen so we are hoping and praying that the chemo will kill the cancer cells and he can have surgery.. He started off with 10 radiation treatments which left his throat really sore and he lost some weight, he started chemo Dec 8 th they started him on Fluorouracil which he carried around a bad with a continuous drip,then his injections in the chemo chair for 3 hours he is given CISplatin and EPIrubicin he goes for chemo treatments every 3 weeks he just had his 3rd one January 30th which they took him off the Fluorouracil and gave him the drug in pill form they call capecitabine. After the 2nd chemo treatment he was able to eat solids again as was so pleased to be able to eat something other then clear soup and boost plus drinks that are full of sugar however we needed for him not to lose anymore weight. I find after his treatments about the 2nd 3rd and 4th day he doesn't feel great but then starts to feel better and better until the next treatment but we will have to see how he makes out with the capecitabine because it comes with other symptoms like diarrhea and thinning of the skin on the hands and feet but likely not until the 2nd week. We are as well going with faith and positivity to cope. My husband Rick had never suffered with heartburn they figure he had silent reflex he only symptom was trouble swallowing when he had the endoscopy they found the almost 7cm tumour at the base of the esposagus close to the stomach. My husband was 59 at the time he was diagnosed. How is your father feeling after his radiation and chemo? Do you know is he is HER2 positive or negitive.? Wishing you and your father the best of luck throughout this journey. Donna P.s please stay in touch our stories are similar.

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by sepideh on Sun Jan 24, 2016 11:42 AM

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Hi. my father is the same issue. he is stage iv esophageal cancer with mets to his liver. he is 67. he lost so much weigth before diagnosis. so his ancologist cant use strong med. but we hope for the future.

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by cmaries on Fri Feb 19, 2016 02:02 PM

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Success story…so far!  My husband, Tom,  was diagnosed Dec 2014 stage iv.  He went for two additional opinions, all three opinions were the same…no cure, 1-1/2 to 2 years, chemo will stop working.  Diagnosis was adenocarcinoma at ge junction, diaphragm and lymph nodes along aorta from top of esophagus to tops of thighs.  Initially was told radiation would target the ge junction, but after ct and pet scan they decided to go with chemo (every two weeks) only because of all the lymph node involvement.  He started on FOLFOX right away…had 11 FOLFOX treatments, then switched to FOLFIRI because his neuropathy was started to get worse.  Today will be his 18thFOLFIRI treatment.  Last year the (3) ct scans showed cancer was stable, some shrinkage, no new areas.  Decided to wait until after the holidays to get a ct scan…I noticed he just started to look good!  Color in his face seemed to change.  Even someone at work said he looked good.

January 15thct scan showed no sign of cancer, January 25thpet scan showed no sign of cancer….2/4 endoscopy showed no sign of cancer.  Doctors were amazed!  Said this really never happens.  I really do not think his oncologist has had a patient that was stage iv and had this happen.   

Tom’s oncologist met with the board (team of oncologists, surgeons, etc.) to discuss his case.   It was decided the best thing to do would be surgery…in case there was a floater in there somewhere, and to get rid of the mass (showing no cancer) that was still at the ge junction.  3/10 will be his esophagectomy.  Tom’s oncologist doesn’t think he needs surgery, but board consensus feels this is the best way to overcome this cancer.  It is really a miracle…the doctors did the right thing from the get go to get to this point….Of course Tom has had many prayers from everyone.   Tom went into this as a fighter...told all the doctors and nurses he was going to fight this.  They didn't think the fighting would work.  One doctor told him "I'm not God, but never say never"!  and we haven't!  Good luck to you and to all others fighting for their lives!

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by eternalife on Fri Feb 19, 2016 07:46 PM

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HI Cmaries,

Wonderful news!! I pray that you will be one lucky family. the next 6 months will be crucial to seal the deal.

Best

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by Mangrovejack on Sat Feb 20, 2016 11:29 PM

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Good Lord, You could not ask for better news ... That is amazing. I am going through a similar situation Stage IV Esophageal Cancer ( except the Folfox 5FU gave me 4 heart attacks in one night so they gave me Taxol instead) However, my results have been nothing but outstanding as well. Mets in Liver and Lymph nodes are gone after 15 treatments and the primary has shrunk quite nicely. I hope very much I can get the results like Tom has had. Again Great News and I am inspired and lifted .... Thank you. 

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by Bond007 on Sun Feb 21, 2016 10:11 PM

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Well is this a good news success story and thanks for sharing. My husband Rick was diagnosed with adenocarcinoma of the GE junction of the esopagus where it meets the stomach after ct and pet scan they have found some nodes in the abdomen to have cancer as well so surgery was not a option. They did start him on 10 radiation treatments while they waited to test the tumour again for HER2 to see if if was neg or pos and it was going to take approximately 4 weeks and it came back negitive. Do you know if Tom's was positive or negitive? My husband just had his 4 chemo treatment a couple of weeks ago and he is on CISplatin, Capecitabine, EPIrubicin he will be going for a scan tomorrow and we will get results back Thursday to see how it's working for him however he is doing much better and now able to eat everything and is not in any pain at all so we are pretty happen about that. I hope we can have results like Tom. The doctors really were not optimistic about the prognosis of his cancer from the get go they said stage 4 because of the spread to the abdomen and really never talked cure they just said they will be able to help him to eat better but typically this cancer will come back. I have been hearing a lot of good news stories so I'm hoping we can be one of them as well. It's such a terrible cancer to have my husband had no warning signs until he had difficulty with swallowing. They figured he had silent reflex. It looks like my Rick is on different chemo drugs then your Tom I will ask my doctor about what your taking I'm not sure what the difference is. We have to have faith and trust in our doctors and pray and hope they are doing the right thing. I live in Canada are you in the States?

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by cmaries on Mon Feb 22, 2016 01:21 PM

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Tom was diagnosed at 51 years old.  We live in Pittsburgh, PA where we have wonderful hospitals.  When originally told stage iv, Tom's doctor got the ball rolling to enter him in a trial when the chemo treatments stop working.  He would have had to go to Johns Hopkins in Baltimore, MD for that....but not needed!  My husband is in very good health...he has lost weight, he is a small person5'4", 146 pounds.  He has never had any problems eating.  He was not HER2 positive.  Surgery was NEVER an option.  

I sure hope that this kind of news will be on everyones plate soon!  I too have read so much info...not much good out there.  Sad to read about just a couple success stores...but there is hope! We are very nervous about the upcoming surgery, as we always say "it will be all good"! GOOD LUCK EVERYONE!  Try not to give up!  

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by Bond007 on Mon Feb 22, 2016 02:09 PM

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It must be a hard decision to have surgery when everything is clear I didn't think the chemo could kill and remove everything this is truly a miracle. We are so happy for you. We're these trial drugs you were on forfox and forfiri ? I mentioned in my last email the ones my husband is on I thought they would use the same for the same drugs for the same kind of cancer. How did your husband know he had cancer? You mentioned he never had trouble swallowing. My husbands tumour was almost 7 cm. my husband was 59 when diagnosed his weight weight dropped to the lowest when he could not eat to 142 and he is 5"9"but he knows the chemo is doing something because he can eat now everything and has gained weight he is 157 now. Ct scan tonight ......excited and nervous.

RE: Stage IV Esophageal Cancer Survivors and Positive Stories Please!!!

by cmaries on Mon Feb 22, 2016 06:35 PM

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Good luck with the ct scan!  My very best wishes to you.  We do not know anything about the trial.  But Tom was not going into any trial for dosage research...only for cure research.  FOLFOX, we have been told has been around for 50 years..not sure about FOLFIRI but FOLFIRI is usually a second-line treatment.  FOLFOX has more side effects also.  Tom started to have periodic pain right under rib cage...he actually thought it was from water skiing, and frequent hiccups (like violent hiccups) Pain started probably at the beginning of October, finally called doctor and was seen day after Thanksgiving.  His PCP asked why it took so long from October to see a doctor, this could be cancer.  We were like "what?"  we were thinking ulcer!  some meds and that's it!  The endoscopy was scheduled, my son went with Tom to drive him home.... when Tom came out of anesthetic the gastroenterologist told Tom he had cancer right in front of our 16 year old son!  Boy, what a blow that was.  When Tom went back for endoscopy last month, the gastroenterologist remembered my son and asked about him....made us feel a little better.  But when she told Tom he had no sign of cancer, she even cried she was so happy.  This hopefully will happen to many, many people!  This gift he has been given.

Bond007 (like the name...shows you are both fighters!)  where are you located?

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