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okiegirl80 · December 2017

Hello! My name is Amy and my husband was diagnosed with Stage IV Esophageal Cancer 4/19/2017.

He was having dysphagia and almost passed out at a ball game due to it so I called and had his endoscopy scheduled immediately. The dr also ordered a swallow study to be done first. When my husband went in to dr after swallow study he was given the news that there was a mass that was believed to be a tumor and the dr wanted to do an endoscopy later that afternoon. After endoscopy I met with the dr and he said that he took biopsies to confirm but that he had done this enough times to know that it was going to come back as cancer. Two days later the dr called and said biopsies were that he had Adenocarcinoma. Dr said he would pull some strings and get us into an oncologist surgeon that he recommended. That was Thursday and by Monday we were in the surgeons office. The morning of our appt we also had CT done and then met with the surgeon. He came in and told us that the CT showed spots which he believed to be tumors in the liver. He said if they are then my husband is no longer a candidate for surgery. We went straight over to the hospital and had biopsies done. Thursday my husband had a port placed by the same dr that did the endoscopy and he gave us the results from the liver biopsies, stating that it was cancer so therefore he was Stage IV. We were absolutely devastated! No one in my family has had cancer and we had never been through anything like this! We have a 17 and 7 year old!! (He also has children from a previus marriage that are grown) How could this possibly be happening to us????

We met with 2 different oncologists at 2 different cancer centers. We decided we liked what one had to say more than the other and chose to begin treatment at a center that is 4 hours away from our home. My husband immediately started treatment (May 5ht)and planned on doing the EOX treatment every 3 weeks, but insurance wouldnt cover much of the Xeloda so we were unable to go that route. We the changed over to the 5FU. All seemed to be going well and in August we did a repeat PET scan and it showed that his tumors had all shrunk by over 50%. But he started having high toxicity and wasnt able to do chemo that week. Towards the end of September he started complaining of painby his ribs so the dr said ok no chemo today and I want a repeat PET on Monday (this was a Friday). PET scan done on Oct 2nd showed that his tumors were now bigger than they had ever been! Two of the 3 tumors in his liver had pretty much joined together to become a huge one, there was now also a tumor on his liver capsule, spot on his ribs (where he was having the pain), 2 spots on his lungs and retroperitoneal lymph node metastasis. My husband then decided he needed to go see his kids in California before starting any new therapy. When he came back he started Paclitaxel and Ramucirumub as "salvage therapy" and had 5 days of radiation for the spot on his ribs for palliative care. Unfortunately his platelets then dropped way too low for him to continue treatment so the dr said to come back in 3 weeks and we will restart the new treatment. When we came back my husband was having increased pain in his abdomen where his liver is. They explained to us that the liver capsule is very hard and as your liver gets bigger from the tumors there is nowhere for the liver to go and it will cause excruciating pain. So because of the new pain dr ordered new CT scans. Of course, new scans on 12/4 showed tumor growth.

Brent (my husband) had biopsies done of his tumor to try to find out what exactly the tumor was made of to see about doing targeted therapy. After the last scans we decided to try a TAPUR clinical trial drug called Sutent--he just started this yesterday. If this doesnt work we will probably go back to the Paclitaxel.

If you have made it this far, thank you for taking the time to read!! My stress, emotions, fear are all just off the charts!! My husband truly believes that this is his last Christmas with us which makes it even harder! Our kids are also having a really hard time as they see what daddy is going through! He has already lost about 90 pounds and has had to quit his job as a Police Officer.

Thanks again! Good luck to everyone through their journey!

Amy

paul61 · December 2017

Have they tested your husband's tumors to see if he is HER2 +

Hello Amy,

I am so sorry that you find yourself here. It sounds like Brent is having a real challenge finding a treatment protocol that delivers the results that you need. It sounds like his medical team has been very aggressive and thorough in his treatment so far but I did not see any reference to testing his tumor samples to determine if his cancer is HER2 positive and if he might be a candidate for a targeted therapy approach like Herceptin? It sounds like so far, the chemotherapy approach has been traditional treatment protocols. Given the results thus far it seems like it might be time to consider a clinical trial approach.

Sutent is a targeted therapy used to treat kidney cancers and certain gastrointestinal cancers. It sounds like Brent is in good hands, and that they are trying all the right approaches to address his cancer, and to give him some physical relief.

I know dealing with the uncertainty of cancer is particularly difficult for caregivers with a young family to care for. There is the constant stream of tests and medical appointments, the stress of waiting for test results, and dealing with the various side effects of each new medication or procedure. Plus trying to explain to a seven-year-old what is going on with Dad. I found that when I was in treatment my wife and I just had to take one day at a time and deal with each day as it came. It can be overwhelming. Hopefully there is someone in your family who can be there for you when you need a break or just need to vent. If not come here, we have “been there” and know what you are going through. You need to take care of you so you can be there to take care of your family.

You will find some Stage IV survivors here that have been through some very difficult struggles. Unfortunately, it takes some time and various approaches to find something that works and what works is not the same for everyone.

Sending positive thoughts for good results with the Sutent approach.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year Survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Deathorglory · December 2017

Hello Amy

Hello Amy,

Sounds like you guys are going through hell. From what you describe, it seems like you are doing everything you can to give yourselves the best chance of beating this beast. You don't mention what hospital you're going to, but they appear to be on top of things. I was (am) stage IV back in 2011 when I had a recurrence in a lung. I was given 7-8 months and told to get my affairs in order sooner, not later. My wife & I don't have kids and I can't even imagine how we would have dealt with things if we did. How horrible for a seven year old, or even a teenager, to have to learn about this stuff.

When I was diagnosed with the recurrence, I was prescribed folfox and was offered a clinical trial (b/c that's what you do with stage IV's), and then the results of my HER2/NEU test came back and I was HER2+. So I was put on herceptin to go along with the folfox instead of the clinical trial. I had a great response to that treatment and tested clean after I finished the folfox. I still get herceptin weekly to hopefully keep another recurrence at bay. That was my path out from a terminal diagnosis. I don't know what Brent's path might be, but it seems like everyone is looking hard to find it. Hopefully, it's Sutent.

Wishing all the best to you & your family,

Ed

okiegirl80 · December 2017

Deathorglory said:
Hello Amy
Hello Amy,

Sounds like you guys are going through hell. From what you describe, it seems like you are doing everything you can to give yourselves the best chance of beating this beast. You don't mention what hospital you're going to, but they appear to be on top of things. I was (am) stage IV back in 2011 when I had a recurrence in a lung. I was given 7-8 months and told to get my affairs in order sooner, not later. My wife & I don't have kids and I can't even imagine how we would have dealt with things if we did. How horrible for a seven year old, or even a teenager, to have to learn about this stuff.

When I was diagnosed with the recurrence, I was prescribed folfox and was offered a clinical trial (b/c that's what you do with stage IV's), and then the results of my HER2/NEU test came back and I was HER2+. So I was put on herceptin to go along with the folfox instead of the clinical trial. I had a great response to that treatment and tested clean after I finished the folfox. I still get herceptin weekly to hopefully keep another recurrence at bay. That was my path out from a terminal diagnosis. I don't know what Brent's path might be, but it seems like everyone is looking hard to find it. Hopefully, it's Sutent.

Wishing all the best to you & your family,

Ed

Thanks Ed! Unfortunately for

Thanks Ed! Unfortunately for us, Brent was negative. I am so glad that the Herceptin worked and is working for you! It's so good to hear positive stories instead of all the negative! Oh and Brent is going to Cancer Treatmetn Centers of America in Tulsa.

Amy

okiegirl80 · December 2017

paul61 said:
Have they tested your husband's tumors to see if he is HER2 +
Hello Amy,

I am so sorry that you find yourself here. It sounds like Brent is having a real challenge finding a treatment protocol that delivers the results that you need. It sounds like his medical team has been very aggressive and thorough in his treatment so far but I did not see any reference to testing his tumor samples to determine if his cancer is HER2 positive and if he might be a candidate for a targeted therapy approach like Herceptin? It sounds like so far, the chemotherapy approach has been traditional treatment protocols. Given the results thus far it seems like it might be time to consider a clinical trial approach.

Sutent is a targeted therapy used to treat kidney cancers and certain gastrointestinal cancers. It sounds like Brent is in good hands, and that they are trying all the right approaches to address his cancer, and to give him some physical relief.

I know dealing with the uncertainty of cancer is particularly difficult for caregivers with a young family to care for. There is the constant stream of tests and medical appointments, the stress of waiting for test results, and dealing with the various side effects of each new medication or procedure. Plus trying to explain to a seven-year-old what is going on with Dad. I found that when I was in treatment my wife and I just had to take one day at a time and deal with each day as it came. It can be overwhelming. Hopefully there is someone in your family who can be there for you when you need a break or just need to vent. If not come here, we have “been there” and know what you are going through. You need to take care of you so you can be there to take care of your family.

You will find some Stage IV survivors here that have been through some very difficult struggles. Unfortunately, it takes some time and various approaches to find something that works and what works is not the same for everyone.

Sending positive thoughts for good results with the Sutent approach.

Best Regards,

Paul Adams

McCormick, South Carolina

DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year Survivor

Life may not be the party we hoped for, but while we are here we might as well dance!

Thank you Paul! Yes they

Thank you Paul! Yes they checked and he was negative. After reading what everyone has said about the Herceptin that was a real bummer for us! I think one of my biggest "problems" if you can call it that is that I absolutely REFUSE to believe that he wont survive this! I hope that Im not completely blind-sided if things dont go the way I want/believe them to go. I am definitely focusing on the "business" aspect of all this...I make all appts, I deal with insurance, I deal with his medication, I scour the internet looking at what his results mean and other options, I make the hotel reservations, I keep track of the money and receipts, etc etc. I think I am so focused on that to keep from focusing on what's really going on...you know what I mean?

Amy

bluetick · December 2017

options

Hi I am sorry to hear your husbands situation. Last year at this date i was diag stage 3. as of today I am cancer free for 6 m onths just got my results . I was was one of the very blessed as I went through chemo and radiation like it was bodybuilding steriods.I also somehow drew the best set of drs that MDA has for esoph cancer..My drs At MDA are shocked 100% turnaround 0 side effects needed no meds other than lorazapam to get through all the needles. I chose not to have a port. I was 130 last year and now back to 190 where i was originally. I felt like a holocaust victim. soooooo skinny 6'1 130 is not pretty. I am doing so well my dr has decided to try and salvage my esoph and fore go surgery. I am in a similiar sit, as yours have kids some grown some not. I chose to hide my diag so as not scare my young one. only close family and one friend were told. I pray your husband can benefit from what i am about to tell you. cutting edge research. FIRST AND FOREMOST READ STRAWBERRIES vs ESOPH CANCER.. One of the few real human studies that was able show a clear and defenative corrolation between diet and cancer.. BOTTOM LINE STRAWBERRIES WILL for most REDUCE YOUR ESOPH CANCER.

https://nutritionfacts.org/video/strawberries-versus-esophageal-cancer/

I personally ate so many strawberries they called me mr strawberry at sams club...I also got the freeze dried powder off ebay. sofruta brand..my drs never really acted like they bought into it but they made me stop taking them during radiation as they feared it would interfere somehow.

1. Accutane has now been deciphered as a cancer killer.. this has been known since 70's but mechanism not understood and studies not followed through until recently where they discovered in jams up protiens in cancer cells only causeing necrosis or apotosis. The drug is going into trials for use as cancer killer. Dr's are not able to prescribe it off lable but if your husband is depressed and drinking you might ask the dr. for a prescription.

https://www.yahoo.com/news/extremely-common-drug-given-alcoholics-151002271.html

talking with dr about this in case of some kind of return of this sucky disease.

2. Noble medical prize awarded to a lady scientist named yu yu Wo (or im close). There is a very common herb that has and is till being used for maleria treatment. It has been documented since before B.C. in chineese medicine. There it was used for cancer treatments. She was through much time and trial and effort able to unravel the mystry. Turns out cancer cells use tremndous amount of iron to go through replication.. The herb jams up the release of the iron causeing ferroptosis. This has been tested in humans and animals and is effective on every single cancer they have tested it on. adeno is one of the ones it kills. The herb is sweetworm wood. very common. it cant be heat prepared though.

https://www.cancertreatmentsresearch.com/artemisia-annua-its-extract-artemisinin/

personally using.

3. Another promising story maybe a trial for him to try

http://www.iflscience.com/health-and-medicine/preliminary-results-early-human-trials-anti-aging-formulas-reveal-no-adverse/

4. EBC -46 this is a extract from the blushwood berry found in a remote region of australia.. this is a new very promising drug although I talked to the guy who found it and he said it will be in testing for a while and there was no chance of me getting it... This drug has already been approved in the vet field but good ole pharmacy usa is holding up the releaase. my vet know all about it and is eagerly awaiting it.. It has been tested on a few humans prior to a study and the results were great. it kills the cancer on the spot and turns it into a scab that heals aways,,,tons of stories just type it in yahoo search.. human trials are ongoing now...

5.crisper Tech is close. now there is a new tech. that is better and cheaper so it may get leap frogged...should be some trials this is where they edit dna.. kinda iffy as there have been subtle changs to other dna strands so thery are mapping outthese problems in studies..china is way out in front on this US is catching up though...

6. there is a new procedure in europe that takes lymphocytes from people who have beat a particuliar cancer and their lyphocytes have returned to killing cancer cells and somehow infuses the protiens needed onto a persons own lyphocytes and replicating with a reinfusion.. this is having great results as not many side effects and its very effective..be very difficult as you would have to travel to england for the therapy.

7. there is a company here in the US where they can analyze your blood and tell your dr what chemo drugs will work and at what doses..just yahoo it it will pop up. they can tailor the best drugs fro each cancer and person.

8. for anyone in remission there is a new blood test that can pick up any returning cancer 100 days before pet scan. they have a dna map of all the cancers and if its circulating it will be recognized. 99.9 accuracy.. Personally doing this..

I am slo taking colostrum.. yes mother milk.. but they have processed from cows and its just a effective as human colostrum...tremendous amount of reseach on it.. tastes horrible but well owrth it.. its expensive.. i use soveriegn laboratories.. its on ebay,,,,,Did you know humans are the only animal that will survive without colostrum from mother...Im betting it might reset my immune system as i did not breast feed as a baby.. My drs say possible its very strong stuff...

I cried like a baby for months so know the unbelievable heartache.. I have always been a manly man saying dumb crap like we all have to go someday blah blah blah..well let me tell you something thats a fact and that is you dont wont to know that day...My poor dear wife has been through so much and has held my hand through every needle. I promised her and god if i die from this i will not go into heaven until she gets to the pearly gates with me. I have offered my flesh and blood to my drs for reasearch so maybe they can find out why i did so well while others on the same protcol with the same dis did not fare well. FYI my tumor was 10 cm started at my nipple line and went into my stomach. The one thing i can say about it is im a glad its me and not one of my kids or wife who got this horrible crap...Keep me in your prayers and i will keep you in mine..

GeriR · January 2018

Hi Amy. I have been praying

Hi Amy. I have been praying for you since I read your story. I hope things are going well and that you were able to have a good Christmas. My husband was diagnosed last February. He's looking at possibly another surgery to remove a tumor from his hip area now. It's been a tough year but with Gods help and family support we have made it to this point.

I hope you are ok and are remembering to take care of yourself. i would be happy to share more with you if you have any specific questions.

Geri

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