38 and diagnosed with stage 4 esophageal cancer

1979bmg said:

14 and 17 month update

Well...this outage and all those posts being erased sure sucks.

 

My November scans showed the PET SUV uptake decreased at the GE junction to 3.1, meaning it likely was inflammation...no other evidence of metastatic disease.

 

January scans show no suspicious esophageal uptake, and mild diffused increased PET SUV uptake in the stomach which is likely inflammation.

 

A few deep lung nodules that were suspicious at initial diagnosis are unchanged since then, and and mildly enlarged spleen continues, 13.4 cm which isnt that bad.

 

Everything else is "stable...negative...unremarkable...no new evidence of metastatic disease."

My boyfriend is 40 years old and was just diagnosed. I am hoping because he is fit and strong he can fight this. This is absolutely a terrible thing to have. I hope that you have more good news, your stories are giving me hope in a time that I desperately need it. 

Hello,

Congratulations on even more good news.  Stage IV survivors aren't particularly common, but they exist.  It's awesome that you continue to share your story of success to help folks who are finding themselves in a similar situation.  A ray of hope can go a long way when they are blindsided with a diagnosis that they really don't understand and are fearful of.  I hope everything continues to go well for you on your journey, but as you know, there are the occasional bumpy stretches.  You've weathered them, though.  So congratulations and continued good health to you.

Best Wishes,

Ed

I personally know someone who had the attitude of Bluetick and he lived only a few months.  Every patient is different and each body reacts differently to the disease and to treatment.  As a Stage 4 survivor, I feel strongly that it would be foolish of me to ignore Oncologists/Surgeons who have dealt with this disease for many years.   I have been through some extreme treatments with extreme side effects but for now I am free of active cancer.    I am blessed to have Faith that keeps me fighting, Drs. who are skilled and compassionte and family and friends who  support me in every way.  

CancerEclipse said:

What are you doing besides chemo?

Dear BMG,

I've fought with ec for 3 years, but not stage 4 level. Sorry yours was so advanced when they found it. I started my treatments with chemo-radiation then switched to naturopathic means for a couple years. Actually this regenerated my esophagus somewhat, kept my immune system strong (chemo really knocks that down) -- haven't had a cold for 3 years, and contained the cancer in the tumor area. If interested in how I dealt with this through the medical, natural, and spiritual, let me know.  cancereclipse@gmail.com

My 54 year old husband was just diagnosed with EC and I would love to know what kind of naturopathic means you used.  His is such a new diagnosis, he hasn't had the petscan done yet.

Thank you so much in advance.

Karter@99 said:

EC

Paul that is wonderful!  My husband was just diagnosed, and besides the inital shock, we are not sure where to start, where to go.  Could you offer any advice?

I am so sorry to hear about your husband's recent diagnosis. A cancer diagnosis is frightening but survivable. You will be referred to an oncologist who will order a series of tests to complete "staging". Staging is to determine the locations of the cancer and the extent it has penetrated the esophagus. He should receive a PET Scan or a CT scan and an endoscopic ultrasound (EUS). The EUS will determine the size of the tumor and the depth it has penetrated into the esophagus. The PET or CT scan will determine the extent that the cancer has spread in your husband’s body. At that point they will assign the cancer a “stage” and define a treatment plan accordingly.

His treatment plan would typically include radiation therapy to kill the cancer cells that are evident from the testing, and chemotherapy to seek out cancer in other areas of the body and destroy those cells. Modern treatment with chemotherapy and radiation therapy is not always pleasant,  but there have been significant improvements in the way drugs are administered, and support medications to reduce side effects.

Some things to consider going forward:

1. Ignore what you read on the internet about survival outcomes. That information is typically dated and is made up of averages that do not consider your husband’s age, health profile, or support network.
2. Attend all of your husband’s appointments that you can and take a notebook and pen so you can take notes and write down questions that you may have in advance of the appointment. You are going to hear a lot of terms that are new. Don’t be afraid to ask to definition of terms and explanation of procedures that you are not clear about. Medical professionals tend to forget that we don’t understand the terms they use every day.
3. Your friends want to help but they don’t know what to do. Be specific about how they can help you with things around the house, shopping, and help with other tasks. You and your husband will be very busy with testing and treatment appointments for the next few months.

Here are some questions you should ask your oncologist:

1. What kind of cancer does my husband have? Adenocarcinoma or Squamous cell carcinoma?
2. Where is the cancer located and how extensive is the spread?
3. What is my husband’s “staging” and what does that mean?
4. Have my husband’s tumor cells been tested for HER overexpression?
5. What treatment protocols will my husband receive?
6. What are the typical side effects he may have?
7. How long will treatment last?
8. Is the intent of the treatment curative or palliative?
9. Is there a 24-hour contact number we can use in the event of questions about treatment or side effects?

I would suggest you post your questions on a cancer forum called “Smart Patients”. This forum is also a cancer survivors form but gets much more readership and is more interactive than this forum. You will find it a https://www.smartpatients.com.

Wishing you the best of outcomes and you complete your treatment journey.

 Best Regards,

 Paul

1979bmg said:

25 1/2 month update.

Last 6 Treatments have been with Tecentriq immunotherapy alone.  No more PET scans for the time being unless something shows up on the CT. As of yesterday, nothing has. Still Showing No evidence of disease for the past 16 months.

 

My spleen is back to normal size after the damage from heavy chemotherapy 2 years ago. My energy level seems to be slowly improving. Fatigue is still noticeable, but manageable and I am able to work around it.

 

I am having my original tumors tested for PDL-1 expression. I assumed that this was done when starting treatment but it never was. This would determine if I could ever take this immunotherapy or Keytruda again if I ever stop treatment and end up with a recurrence.

Well 1979bmg, that's about as good as it gets.  Congratulations, and continued best wishes going forward.  The world needs a lot more folks like you to shine the light.

1979bmg said:

29 month update

In November, I did an endoscopy for the first time in over two years due to some difficulty swallowing food that was getting worse again.

 

There is a tiny Nodular Mucosa in the lower end of the esophogus, it was biopsied and did come back cancerous. With as severe as the disease was initially, that is nothing shocking or Earth shattering. We are unsure if the tumor is residual or recurrent.

 

My oncologist does not believe that the tiny tumor is big enough to be causing my swallowing issues. It is possible that is Achalasia or muscular problems that sometimes develop after large tumors disappear.

 

The plan is to do an Endoscopic Ultrasound (EUS) and see if the tumor can be scooped out. If not, I will likely do some radiation with my current immunotherapy.

 

The tumor is so small that my follow-up CT scans yesterday were unable to visualize it. The rest of the scan showed no definite evidence of any disease. Some of my lymph nodes have even decreased in size slightly,.meaning the disease is more than likely still contained and controlled. The last 13 treatments have been with Tecentriq Immunotherapy alone. Yesterday was my 61st treatment.

 

Also, I did have my PDL1 level tested. It is near zero. So theoretically, the Immunotherapy should not have worked.

 

The reseaech company has finally given us the ok to do treatment every 3 weeks instead of every two. Meaning as long as this  treatment keeps working, I have more time to enjoy life and forget about cancer.

Hello,

Seems you've run into more bumps in the road.  But you're in your third year of fighting and winning.  You are now an experienced fighter with a winning track record.  You provide hope and inspiration to folks who are finding themselves with a new diagnosis.  Hopefully, they can just scoop out the tumor while they're there anyway.  And perhaps something like a stretching can help with the swallowing.  

One of the things I say all of the time is that nothing is perfect, but I'm here to complain about it, so I'm winning.  Sounds like you.

Best Wishes,

Ed

ARTSIOM said:

my father have adenocarcinoma

my father have adenocarcinoma oesophagus T3N2M1

Where can I found all chemotherapy combination for this disease?

Thank you!

The National Comprehensive Cancer Network (NCCN) has excellent patient and clinical guideline info:

https://www.nccn.org/patients/guidelines/content/PDF/nccnquickguide-esophageal-patient.pdf

Wishing your father the best in his treatment plan.

Regards,

Paul

Deathorglory said:

Good to Hear

Hello,

It's good to hear that you're doing well with your treatment.  It hits different people in different ways, but I'd assume that your youth and physical fitness are factors working to your advantage. 

You mention that you've completed round #3 of chemo.  What chemo are you on and how many rounds are you scheduled for?  My stage IV go-around was 12 rounds of bi-weekly Folfox with weekly Herceptin.  It was brutal (especially at the end), but it was effective. 

I'm six years from my stage IV diagnosis this month.  Unfortunately, there aren't a ton of stage IV success stories out there (though there are a few).  Please continue posting/updating here, you are, in fact, giving hope to others.  If you look at the counter on your post, you can see that a whole lot more people read your posts than actually reply.  Each of those readers may well be someone you've positively impacted.

Best Wishes,

Ed

the way you encourage others to post is greatly appreciated:)