My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

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RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Kathy-bmth on Fri Jan 20, 2017 02:11 PM

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On Jan 19, 2017 12:17 AM carterj wrote:

Don't panic (lol who doesn't initially). I sympathize with your husbands plight and pray for you all. Long story short get a second opinion to help you make decisions. I had EC and had neo-adjuvant chemo/rad then waited the appropriate "cook time" then had the Ivor Lewis robotic method for removal of the GEJ and 18 lymph nodes. My ec was HER2 positive make sure they test it for there is another drug to control it. HER2 makes ec hyperactive. Surgery was June 1st went back to work Aug15th and had my for first post "cure" cat scan only to reveal the ec had metasized to my liver and lungs courtesy of HER@ positivity. Now I'm back to chemo only with Herceptin to control HER2. new cat scan on Feb 2 hoping for shrinkage. HER2 suppression is long term. This disease is very aggressive so investigate, ask questions and go to it. BTW I  am 52 now with a 17 and 13 year old so Iam trying my damndest to stay around for a while...Jeff

Thank you Jeff, my husband is HER2 negative. Can you please tell me what is the difference from positive to negative? 

We had the second opinion and it seems the treatment that they are offering is the right one EOX (epirubibin, Oxaliplatin and Capecitabine).

It’s a difficult time and hope one day they will find a cure for cancer.

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Kathy-bmth on Fri Jan 20, 2017 02:17 PM

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On Jan 13, 2017 1:54 AM robertakass77 wrote:

Kathy, my husband, like yours was diagnosed with stage four esophageal cancer. We discovered his liver had large tumors, as well as several small tumors.They "" target="_blank" rel="nofollow">http://tumors.They " target="_blank" rel="nofollow">tumors.They recommended pallative care to keep him comfortable. We were not ready to quit. That was almost four years ago. No one has a crystal ball. Don't give up just because it is a tough cancer. I wish you and your loved ones well. God Bless

Thank you, wish your husband all the best.

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by bobdonaghy on Sat Jan 21, 2017 03:55 AM

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On Jan 20, 2017 1:58 PM Kathy-bmth wrote:

Thank you Bob, my husband's traetment is EOX (epirubibin, Oxaliplatin and Capecitabine). have you used the same Chemo trearmnet?

lots of website talking about cannabis oil but we haven't used it yet. Have you heard of this oil?

Thanks Kathy

mine was 5FU, leucovorin and oxaliplatin and I tested positive for the use of herceptin. I'm looking into cannabis now for both pain control and the possibility that it actually fights cancer as some studies have shown. the oxaliplatin was stopped after my 9th treatment as I was starting to show signs of neuropathy in fingers and toes.

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by carterj on Sat Jan 21, 2017 02:19 PM

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That's great. It means that his body is not making the protien receptor that makes the cancer grow like crazy. Laymans terms but your doc can explain better. Prayers for you, it's hard just keep fighting...

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Wickedinns on Tue Jan 31, 2017 10:24 AM

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Hi Kathy My husband was diagnosed in Mar 2016 with stage 4 mets to liver., one node and is HER 2 negative. His doctor more or less said go enjoy what you have left in life and made an appointment with thoracic surgeon for a stent. We went home and thought it threw and said nope...we want to fight. We met with a hard hitting oncologist who canceled stent and hit him with same regime your hubby is on. He had five rounds when his esophagus shut down, so chemo was stopped and radiation ordered...he was booked for ten but only had six... by now he was totally blocked and he was starving to death so he ended up with stent. Things were looking bleak but with the power of prayer, staying positive and a new found determination... our oncologist was looking for trails but because if the stent, most everything was being taken off the table. I started researching different ways of healthy eating kept him moving and found "cannabis". A nurse told me to Google Rick Simpson "Phoenix Tears" and here we are...he had regression in EC so stent was removed and is now in a clinical trial for pembrolizumab. He started first of November and has had regression in everything and has slowly..and I mean slowly... been putting weight back on. It is a tough road but hang in there...we never give up hope. As far as the HER2 ...it all has to do with what kind of treatment they can give him because of it. Hope this isn't too confusing but there is always so much to say... if I can help you in any way...please feel free to ask... Sending you positive vibes Wanda

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by RLScott on Fri Feb 03, 2017 01:08 PM

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Hi my name is Robin  wed we found out my husband married 31years this July he's he 59 years old we just learnd he has esophageal  and liver cancer stage 4 they also told us surgery is not an option  , a feeding tube and a port will be put in Tue  they are doing kemo and radiation at same time  5 days a week. He's being so positive and strong I  am not so positive but would never let him know. He lost his Dad 14 years ago and his brother 4. Years ago to the same cancer (esophageal )  on top of it all he has. An enlarged heart  .. 

When does your husband treatment start?  

I have so many questions  myself yet I don't know were start  .

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Wickedinns on Fri Feb 03, 2017 04:43 PM

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Hang in there Robin !!! This is a tough cancer ..any cancer is I guess... but it is sneaky and smart. We haven't given up even when things seem at their worst. Stay positive and research ... as people on this site will tell you..every one is different and what works for one won't work for another. I listen to others fighting and and those who are surviving and I take bits from them all...research, ask questions ... it is mind boggling and can be overwhelming...so I just go at my own pace. I have learned at times I have to be pushy and tell him to eat/ or drink what i make and I also ensure he gets his rest but also moves...walking and working with exercise bands ... Good luck....you too will be in our prayers... Wanda

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by bobdonaghy on Sat Feb 04, 2017 05:01 AM

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there are a ton of people here that can answer your questions based on their experiences with cancer. use us. also don't be afraid to ask questions with your doctors, take another family member or friend with you so you can remember the information that is thrown at you. I depend on my daughter to go to all my appointment with me. she remebers questions that I forget to ask and she helps me remember what we were told. If I remember right, my first treatment started about 2 weeks after diagnosis. It is an agressive cancer but 2 weeks wont make a difference. if I can be of help or even a shoulder to cry on, please ask. I hope that I have helped others here and I know that I have been helped. I will put both of you in my prayers.

Bless you

Bob

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by RodCarlson73 on Sat Feb 04, 2017 06:28 AM

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My father was disgnosed with with EC xmas 2016....  by mid january we found out stage four and in lymph node and also pelvic area...   only option is Chemo.. he has the port and about ready to get feeding tube put in... he remains as positive as he can be.  Of course his VA doctors say there is no cure and not really any cure or hope for survivorship....   Im not giving into this.. I have attained liquid probiotics at this point he will start to injest and am seeking any and all alternative treatments that can be done..   There are Cancers that are being cured, there are cures that are being subsided in this country...  Mexico has like 14 altnerantive treatments in a 3 week program they offer..  canibus although it works with some cancers .... Has it ever cured or subsided stage IV esophogus..    What if any alternatives does anyone know about..  God bless yall.. and many prayers and thoughts with your family member as well as your loved ones..  BE STRONG and BE Persitant.  The Cures are out there....

RE: My Husband has Esophageal Cancer that's spread to liver 39 years old ?? (SHOCK)

by Vaquero45 on Thu Feb 09, 2017 04:48 AM

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Hello, I am very sorry to hear about your husband.  I'd like to share my experience so far.  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. 

I know full well that this is a virulent disease, and that I'm not out of the woods yet.  But there ARE certainly stage IV survivors with several years of life after diagnosis.  Do not lose hope, and do not pay attention to the statistics.  Each case is unique.  I've done my best to maintain a good attitude, and I believe that it also helps the body if the mind is positive. 

Please don't hesitate to ask me anything.  I just signed up for this forum today, but I've been reading it all through my treatment.  It has given me a lot of hope and support, and I'm grateful for everyone who contributes here.

And by the way....I still don't have my affairs in order. 

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