Esophageal cancer metastasized and spreading quickly

I am so sorry. My husband was diagnosed in January, scans in February revealed stage 4b. He just started chemo 2 days ago at Mayo in Florida. He is getting 2 chemo drugs and 2 other drugs. He also is not a candidate for surgery and has received palliative radiation to the areas of bone mets.
We are waiting on gene testing and a cheek swab (will give information on how my husband metabolizes the drugs) to give more information for additional treatments.
Not sure if this is helpful, but wanted too give you as much information as possible to help you make a decision on seeking a second opinion.
Stay strong.

Hi @angiegirl76, I can imagine that your husband's diagnosis breaks your heart. I can see that you are doing all you can for your dear husband. I hope you saw the helpful reply you got from @jmp1514, who's is on a similar journey with her husband.

Mayo Clinic has 3 locations in AZ, FL, and MN. Here is more information about getting a second opinion: http://mayocl.in/1mtmR63

I'm also tagging @atafitness @socalkelly @davidwrenn @ajfromchicago who may have tips and encouragement to share.

How are you doing?

@angiegirl76
I was diagnosed with stage 4 squamous cell esophageal carcinoma in 01/19. I was also told that I was not a candidate for surgery due to my 35+ year history of MS and achalasia.

Following installment of my port, I had a good clinical response to radiotherapy and a FOLFOX chemotherapy regimen (folinic acid, 5 flurouracil and oxaliplatin) with marked reduction in all previously identified lesions and no new lesions.

Scans on 02/21 showed I had a recurrence of disease with metastasis to my right scapula, both kidneys and 3 new retro-peritoneal and para-hepatic nodes.

I was treated with another round of a more intense FOLFOX regimen and added the immuno-oncology drug,Keytruda. Unfortunately, the FOLFOX caused severe neutropenia and the Keytruda triggered a relapse of my MS after 3 doses.

I was hospitalized and in rehab for more than 2 months. I also developed esophageal strictures due to radiotherapy induced fibrosis and became unable to swallow solid foods or liguids. I had a G-tube placed. My scan prior to hospital discharge showed that I had a good clinical response to the FOLFOX/Keytruda regimen. My bone mets were gone, and my renal mets and retro peritoneal nodes were significantly reduced.

Due to concerns of worsening my MS, I resumed treatment with a less intense maintenance chemotherapy regimen of leucovorin (folinic acid) and 5FU for 3 months. This provided me some degree of control of my cancer while recovering from my MS relapse. Scans showed some progression of my disease so I resumed additional rounds of FOLFOX but had to discontinue the regimen after 4 cycles due to worsening neuropathy and neutropenia. Repeat scans showed a reasonably good clinical response with lesion shrinkage and stable disease.

Due to oxyplatin's worsening of my neuropathy, I was switched to a FOLFIRI regimen which I found to be more tolerable. FOLFIRI utilizes Irinotecan rather oxyplatin which minimizes the neuropathy. Studies have show that it is a slightly less effective but more tolerable second line regimen for esophageal carcinoma.

Remarkably, my last scan on 2/23 showed a complete clinical response with no evidence of active disease in my esophagus, bones, kidneys and no nodes. In addition, I've gained weight with a 2000 calorie/day G-tube feed of Nutrena 2.0 along with various vitamins and supplements.

When I was first diagnosed I weighed 175 lbs. When I was discharged from the hospital/rehab I weighed 122 lbs. I weighed 157 lbs at my last visit to the infusion clinic this past Thursday. I am not longer able to have additional esophageal dilations due to unacceptable risk of rupture. I've been totally non-po for more than a year and am totally dependent on my G-tube for all my nutrion, hydration and medication needs.

The point of my rambling response is that while your situation may appear hopeless at present, it is important that neither you, nor your husband give in to despair. Instead, you must encourage him to fight his disease as aggressively as possible. Never give in, never surrender! I don't know where your husband is receiving treatment but I would strongly suggest that he seek second opinions regarding his treatment. Also, if you haven't already done so, consult a nutritionist to ensure that he is recieving optimal nutrition and hydration. If possible, get him a physical therapy consult and get him out of his bed and doing light exercise. Walking, stretching, stationary biking and lite weight work have proven very helpful for me. Above all, you both must try to maintain a positive mental attitude (PMA). You will both get through this ordeal.
I just turned 70 and I am planning on being around for a few more years. I'm sure that your husband will too.

@davidwrenn what a stressful but enlightening story. I’m so glad you found the right “recipe” that is addressing both the cancer and your MS. Mental attitude means a lot in the battle!
@angiegirl76 yes seek out multiple options for your husband. And be sure as a caretaker, you’re caring for yourself. My husband was diagnosed in January 2022. He underwent the FOLFOX chemo regimen, and 30 rounds of radiation. He saw some shrinkage of the tumor and they did an esophagectomy in July 2022. In October he began immunotherapy with Keytruda. His scan in January 2023 showed more tumors in his lung and nodes. We’re waiting on a biopsy of the tumor to ensure we have the right chemo treatment plan. It’s a tough road and trying to stay active and positive makes all the difference. Hang in there and leverage this group. There is great support and resources of information!

@davidwrenn Thank you for sharing your journey. You give me hope for my husband.

Thank you @davidwrenn for sharing. My mom, age 77, was just told she has large mass at the top end of her esophagus. Test completed show that the only other area is in her right tonsil area (she had tonsils removed in 2011 when she had cancer behind her left tonsil)
We live in Idaho and they don't have surgery available her, nor would I want her to get here. We are heading to her previous oncologist at Stanford on June 19.
I pray that they can do surgery or treatment. Unfortunetely due to previous radiation she has been told that is not an option.
No one has told us her "stage' yet but I am guessing due to the size along with cancer in tonsil area, it is at least a 3 or 4.
Good news was lungs, airways and lymps were all clear.
This is so new and we haven't been able to speak to oncologist here yet.
The stories about care at Mayo are inspiring. I am trying to keep a positive outlook as take it day by day...and a lot of praying.

@hfoggy

I'm glad to hear that your mom's latest scans showed no evidence of active disease in her lungs or mediastinal lympadenopathy. I think a return visit to Stanford is an excellent idea. It is a NCI designated comprehensive cancer center that offers the latest therapies for a variety of cancers.

I assume your mother has had genomic profiling of her tumor performed. If not, she should have this done to provide guidance as to the most effective chemo and targeted immunotherapy regimens.

As to the lack surgical options, I'm sure it's related to prior radiation induced reactive fibrosis. Unfortunately there is not a lot that can be done to alleviate this. Perhaps focused beam radiotherapy can be used to de-bulk her existing tumor(s). If this is an option, it may provide her with some relief and improvement in her swallowing abilities. Stenting may also be an option but they are problematic as they tend to shift position, may become overgrown with scar tissue or cause preforations and pain. She can also have a G-tube placed to maintain good nutritional and hydration status. As my esophagus is totally occluded by radiation induced fibrotic strictures, I've had a G-tube in place for more than 2 years. It has allowed me to regain and maintain weight. Other than having to have them replaced every 3-4 months, they are relatively problem free.

I know all of this seems a bit grim but it is absolutely critical that you maintain a positive mental attitude and not give in to despair. I believe in the in the power of prayer and God's mercy but also in the Stoic maxim that the obstacle becomes the way. That is to say that while her current situation may limit her treatment options, she and her care team can accommodate and adapt.

I really appreciate this information
I’m not sure if she has had geonomic profiling yet
I am going to reach out to one of the doctors. Our oncologist here has been away for almost 3 weeks. The care hair is nothing like it is in the San Francisco Bay area. I’m looking forward to getting her back to Stanford and getting some answers.
I’m going to keep a positive attitude and continue to pray. One day at a time. Thank you again.

Angiegirl76
I know your original post was in 2/24 but I'm checking in to see how your husband is doing in his battles with his esophageal and gastric cancer. I hope he is doing better and has responded to his chemo and immunotherapies. I know the outlook looked bleak but it's not insurmountable. I was in a similar situation with Stage 4 disease and multiple mets to bone, kidneys, and multiple nodes. Surgery was not an option
My outlook seemed bleak but with focused high intensity radiotherapy followed bysuccessive round of FOLFOX,FOLFIRI and 3 treatments with Keytruda along with a lot of prayer I had good clinical response. All my lesions were eradicated save one node. I am now 4+ years into the struggle
While my results are unique to me, your husbandmay achieve similar results. It's critical that you both maintain a positive mental attitude. Encourage him to do lite exercise such as walking, stationary biking, and low weight lifting. Also ensure that he gets adequate nutrition and hydration through his G-tube. Hopefully, this will help him deal with the effects of his treatments and allow him to regain a bit of weight and muscle mass. This will help improve his quality of life
Never lose hope and always believe thatmiracles do happen.

I posted back in March and we have new updates and need some input. The Opdivo treatment did not suppress the cancer and it’s taken a hold in his lymph nodes. Confirmed via biopsy it’s the same cancer and metastatized. Oncologist started him on FOLFOX this last Monday. Husband chose to do Xeloda in pill form versus pump. He did infusion and first dose of pills. 3 hours after he finished he had a very bad reaction - uncontrollable vomiting, profuse sweating (I mean A LOT), freezing despite having 4 blankets and a wool beanie on. He ended up in ER and it took them several hours and admitting him to get the vomiting under control.Has anyone else had this experience with FOLFOX?
We meet with oncologist next week and we’re a little nervous to proceed with this treatment plan. Can’t go to ER every time he gets treated…