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

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

by LynnAW on Wed Jun 29, 2016 09:59 PM

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hi flopsy. I was diagnosed stage 2EC in April 2015. I'm also in washPA. My oncologist and radiation docs are UPMC and my surgeon is AGH. They have all been great. I am in remission, but my last scan shows a suspicious lymph node. good luck to your husband. Lynn

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

by tankyjoe on Wed Jun 29, 2016 11:16 PM

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On Jan 17, 2016 7:47 AM JeniD wrote:

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

HI My name is Steve Im 64 I dont type well but  my story may help I was told I had  a 7 inch tumor about 6 years ago I had chemo and 26 or so rad treatments and the tumor scrank to 3 and 1/2 inches with no live  cancer cells found. My doctors say there could be a good posibilty of retuning cancer if no surgury so I had them cut it out.It has been a long haul with asperating and getting phenmonia and then 8 months later I had a heitial hernia and they did surgery again but God has blessed me and with my wife and many others Im still here. It hasnt been easy but keep the faith it could be worst. I have worked most of the time but am struggling now with work I could have taken disability but I needed to work to be happy.Its going to be rough not working but keeping weight on is a real problem.If I can help anyone with any advice feel free to ask I dont get on the computer often but my prayers are with all fighting this horrible cancer.

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

by kel104852 on Mon Jul 04, 2016 11:13 PM

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I hope and pray you don"t get it back

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

by gjones2 on Sun Jul 17, 2016 05:16 PM

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I am curious as to what alternative treatments you may have tried.  I too have just recently been diagnosed with stage 4 esophageal ca spread to liver & lymph nodes. Also do you know what chemo you were given?  I have been googling like crazy...and remaining positive!

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

by MalloryZ on Tue Mar 14, 2017 12:11 PM

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Good morning, I am new to this board but can relate to your story so I thought I would share. I would also love to hear how your husband is doing... I hope we'll! My husband was diagnosed 6mo ago with Stage 4 esophageal junction cancer. When he began having symptoms (reflux type symptoms and not swallowing well) they found a spot on his CT and the endoscope confirmed it was cancer- 10cm tumor between his esophagus and stomach, in the surrounding lymph nodes, and two spots on his liver. Needless to say we were devastated. He is 31 and we have two little girls, ages 1 and 3. He tested HER2 positive (very low however) and began treatment right away.He had a port out in and we go for treatment every 3 weeks. He received Herceptin, Taxotere (he received Taxol the first 3 rounds but had a sever reaction so they switched to Taxotere) and Carboplatin. After the first 3 rounds he had a CT and the tumor shrunk by 50%. After the next three rounds he had another CT and the tumor shrunk by another 50%. He has his 7th round today and after round 9 he will have a PET scan and CT and we will hopefully be able to talk surgery after that (dependent on the results). It is very unlikely to have surgery with metastix cancer (as I'm sure you know) but we are praying and staying as positive as possible. He is young and strong and is so amazingly and positive! It is very difficult at times with young children, but then it is also a blessing bc they keep us going. I hope and your family are doing well.

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

by Wickedinns on Tue Mar 14, 2017 06:50 PM

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Hi My husband was diagnosed in March 2016 with adenocarcinoma with mets to the liver and his prognosis at first was 1 1/2 - 2 yrs but after 15 weeks if the same chemo your husband was given life went to heck in a hand basket. His esophagus closed down so chemo was stopped and he was booked for ten radiation treatments. It two had to be stopped because by now he was totally blocked and he was starving. They inserted a stent which devastated us because it limited the chemo she could have. So chemo stopped July and radiation august...we were scared becasue nothing was happening except some talk. I got mad and started feeding him very healthy ( no more sugar the doc wanted him to eat) and high doses of cannabis ...we stayed positive when things looked their worst and kept on living. Then in the middle of October, he was accepted into a clinical drug trial in Montreal. When they were checking to see if he qualified, they removed his stent as tumour regressed...yea as now he could he better. He had lost 50 pounds to start but was now making small in roads to gaining small amounts...better then losing. Now after six pembrolizumab treatments, one liver lesion is gone, one has shrunk, the swollen lymph node is gone and he gained more weight . His doctor was so very pleased...we are ecstatic !!! We stay positive...even on the low days... live, eat very healthy, walk a lot, continue with cannabis and PRAY as we pray for all the cancer fighters and their families !!! Good luck everyone ! I might add...my hubby's HER 2 was negative.

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

by Vaquero45 on Tue Mar 14, 2017 07:55 PM

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I posted this in another thread, but would like to share it here as well:

I was diagnosed with esophageal cancer, stage IV in July 2016.  I had a 2-3 cm main tumor at the junction of my esophagus and stomach, along with a few enlarged lymph nodes in my chest along my esophagus.  My first PET/CT scan also showed a small 1 cm area of increased uptake in my liver, indicating likely metastatic disease.  This took surgery off the table, and I was offered "palliative care" chemotherapy.  At 47 years old, I was told to get my affairs in order.  Meh.

I was put on a regimen of FOLFOX chemo, which is 5FU and Oxaliplatin.  I had a port installed in my chest in a short outpatient surgery, which went well.  Just a little soreness for a couple of days after the surgery.  I started chemo infusions every other week, with a 2 hour infusion at the cancer center (Oxaliplatin) and a 48 hour take-home pump of chemo (5FU).  After 6 treatments, I had another PET/CT scan in November.

My scan showed only a small 1 cm area that was possible residual cancer, and a small lymph node that was possibly suspicious for cancer near my stomach.  (Precaval node)  All of the lymph nodes near my esophagus, which had previously lit up like a Christmas tree on the my first scan, were clear.  The spot on my liver was also gone. 

I took a short break from chemo (3 weeks), then back on the FOLFOX.  I made it to my 9th treatment before discontinuing the Oxaliplatin due to worsening neuropathy in my hands and feet.  This is common for Oxaliplatin.  Two more rounds of 5FU in the take-home pump, and I just had a 3rd PET/CT scan yesterday.

I am NED!  (No evidence of disease)  My doctor still uses the old term "complete remission."  He says that this excellent response to chemo alone is not typical.  NED at 7 months after initial diagnosis with stage IV EC. 

I am eager to share with everyone what I think has led to this outcome in my case.  If you do a Google search for cancer, fasting and curcumin, you will see a lot of promising information.  Nothing concrete, but postive results in the lab and in small animal studies. 

When I began treatment, I decided that I was going to use fasting and curcumin to try to beat this disease, along with the prescribed chemotherapy.  I fasted for 24-36 hours before treatment, then another 24-36 hours after my initial infusion while wearing the 5FU pump.  I would normally eat a light breakfast the day of "pump off" before I went in to the cancer center to have my pump disconnected. 

Except for the weird neuropathy from Oxaliplatin, I breezed through chemo pretty well, with very little side effects.  Just a little bit of fatigue and some hoarseness and cold sensitivity after treatment, which resolved fairly well in a few days.  There was a study done where fasting was shown to help alleviate side effects of chemo, and I believe that it worked for me.

I also took a curcumin supplement called Life Extension Super Bio-Curcumin.  It comes in 400 mg capsules.  I took 6 a day, and took 9 a day during my last 2 chemo treatments.  Curcumin is from the spice turmeric, which is a spice used in curry and other Indian food.  It has shown anti-cancer effects in several studies, and to actually enhance the effect of FOLFOX chemo.

I also changed my diet and started trying to eat less processed food and more fresh fruits, vegatables and organic foods.  I avoided dairy, and drastically cut my sugar intake.  Basically, I started eating healthy.  I also started paying attention to the antioxidant value of foods and including them in my diet.  Broccoli, pomegranate juice and black raspberries are especially good.

As is the usual case with stage IV, I am still not a candidate for esophagus surgery.  My chemo infusion treatments are ended for now, and I am going to start taking Xeloda pills, which are basically 5FU in a pill form.  This is referred to as a "maintenance" plan, since the goal is to keep any leftover cancer cells that may still be floating around in check. 

I have decided that I will continue to take curcumin supplements for the rest of my life, as I think that it was a major contibutor to my excellent outcome so far.  I can't prove it, of course, and everyone's cancer is different, as is everybody's body chemistry.

UPDATE 03/14/2017:  Still doing well, and have just completed my first 2 weeks of Xeloda.  I've got a small sore on my tongue, but other than that, Xeloda hasn't caused me any problems.  Just had blood work done, and my CEA is 1.2, well within normal range. 

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

by Wickedinns on Thu Mar 01, 2018 04:26 PM

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On Mar 14, 2017 7:55 PM Vaquero45 wrote:

I posted this in another thread, but would like to share it here as well:

I was diagnosed with esophageal cancer, stage IV in July 2016.  I had a 2-3 cm main tumor at the junction of my esophagus and stomach, along with a few enlarged lymph nodes in my chest along my esophagus.  My first PET/CT scan also showed a small 1 cm area of increased uptake in my liver, indicating likely metastatic disease.  This took surgery off the table, and I was offered "palliative care" chemotherapy.  At 47 years old, I was told to get my affairs in order.  Meh.

I was put on a regimen of FOLFOX chemo, which is 5FU and Oxaliplatin.  I had a port installed in my chest in a short outpatient surgery, which went well.  Just a little soreness for a couple of days after the surgery.  I started chemo infusions every other week, with a 2 hour infusion at the cancer center (Oxaliplatin) and a 48 hour take-home pump of chemo (5FU).  After 6 treatments, I had another PET/CT scan in November.

My scan showed only a small 1 cm area that was possible residual cancer, and a small lymph node that was possibly suspicious for cancer near my stomach.  (Precaval node)  All of the lymph nodes near my esophagus, which had previously lit up like a Christmas tree on the my first scan, were clear.  The spot on my liver was also gone. 

I took a short break from chemo (3 weeks), then back on the FOLFOX.  I made it to my 9th treatment before discontinuing the Oxaliplatin due to worsening neuropathy in my hands and feet.  This is common for Oxaliplatin.  Two more rounds of 5FU in the take-home pump, and I just had a 3rd PET/CT scan yesterday.

I am NED!  (No evidence of disease)  My doctor still uses the old term "complete remission."  He says that this excellent response to chemo alone is not typical.  NED at 7 months after initial diagnosis with stage IV EC. 

I am eager to share with everyone what I think has led to this outcome in my case.  If you do a Google search for cancer, fasting and curcumin, you will see a lot of promising information.  Nothing concrete, but postive results in the lab and in small animal studies. 

When I began treatment, I decided that I was going to use fasting and curcumin to try to beat this disease, along with the prescribed chemotherapy.  I fasted for 24-36 hours before treatment, then another 24-36 hours after my initial infusion while wearing the 5FU pump.  I would normally eat a light breakfast the day of "pump off" before I went in to the cancer center to have my pump disconnected. 

Except for the weird neuropathy from Oxaliplatin, I breezed through chemo pretty well, with very little side effects.  Just a little bit of fatigue and some hoarseness and cold sensitivity after treatment, which resolved fairly well in a few days.  There was a study done where fasting was shown to help alleviate side effects of chemo, and I believe that it worked for me.

I also took a curcumin supplement called Life Extension Super Bio-Curcumin.  It comes in 400 mg capsules.  I took 6 a day, and took 9 a day during my last 2 chemo treatments.  Curcumin is from the spice turmeric, which is a spice used in curry and other Indian food.  It has shown anti-cancer effects in several studies, and to actually enhance the effect of FOLFOX chemo.

I also changed my diet and started trying to eat less processed food and more fresh fruits, vegatables and organic foods.  I avoided dairy, and drastically cut my sugar intake.  Basically, I started eating healthy.  I also started paying attention to the antioxidant value of foods and including them in my diet.  Broccoli, pomegranate juice and black raspberries are especially good.

As is the usual case with stage IV, I am still not a candidate for esophagus surgery.  My chemo infusion treatments are ended for now, and I am going to start taking Xeloda pills, which are basically 5FU in a pill form.  This is referred to as a "maintenance" plan, since the goal is to keep any leftover cancer cells that may still be floating around in check. 

I have decided that I will continue to take curcumin supplements for the rest of my life, as I think that it was a major contibutor to my excellent outcome so far.  I can't prove it, of course, and everyone's cancer is different, as is everybody's body chemistry.

UPDATE 03/14/2017:  Still doing well, and have just completed my first 2 weeks of Xeloda.  I've got a small sore on my tongue, but other than that, Xeloda hasn't caused me any problems.  Just had blood work done, and my CEA is 1.2, well within normal range. 

Amazing story !!! Thanks for sharing and giving hope ! I am the wife of an EC patient... dx March 11/16 stage 4 with Mets to liver. Hanging in and keeping the faith. I was just wondering if you were HER 2 positive or negative ??? Thank you Wanda

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

by mashahasha on Fri Mar 02, 2018 01:05 AM

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Thank you very much for sharing your story--especially with all the details of dosing for Curcumin. I am a big believer in fasting and organic food, non-processed foods, and no sugar. I was diagnosed with breast cancer 25 years ago--stage2b. I cut out sugar for a while and I think it was very helpful. I also cut down tremendously on eating and ate in a more macrobiotic way. It has been hard recently for me to cut sugar out--but I know I need to. I will share this with my husband who just found out yesterday that he has metatastic stage 4 EC. His oncologist has also prescribed Folfox. My husband is Her 2 negative. What were you? I even feel better about his treatments becuse of you! I just pray my husband will respond so positively to the chemo. He will be 65 this month.

You have really given my children and me hope. I can't thank you enough and we wish you continued success and zest for many years to come.

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

by Vaquero45 on Sat Mar 03, 2018 08:41 PM

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Hello!  Another update.  It's been a year since I've posted last, and I am still doing fine!  Full remission, taking low dose Xeloda every other week.  Last scan was December 6, 2017, all clear.  I have another routine scan coming up in late April.  I still take curcumin every day, and will for the rest of my life.  July 23 will be 2 years since my stage IV diagnosis.

I was Her-2 negative, for those asking.  Good luck to all, make the most of every minute! 

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