Update, chemo/radiation, radiation pneumonitis, no surgery for now

kbdarnall
kbdarnall Member Posts: 30

December 2017, my husband was diagnosed with Barrett's type adenocarcinoma (T3N0M0). It was 5 cm long, at the gastro-esophageal junction. During Jan-Feb 2018, he had 6 chemo infusions (carbo/taxol) and 29 radiation treatments (IMRT). The last day of radiation was cancelled because my husband was hospitalized for symptoms of "sepsis." Eventually, he was diagnosed with “radiation-induced-pneumonitis.” He was 5 days on mechanical ventilation, hospitalized 10 days, followed by 2 weeks at a skilled nursing facility. There was so much muscle atrophy, he could barely turn over in bed. But he recovered strength quickly through physical therapy.

 

Yesterday, the radiation oncologist showed CT-PET scans (before and after treatment) to help us get better perspective. All clear. But it’s early yet. Microscopic cancer cells could be floating in the esophagus,  liver, lungs, adrenal glands, bones, etc. Husband will have another endoscopy in June, then CT in 3 months, PET in 6 months, CT in 9 months, and so on. If he's very, very lucky, the cancer won't come back. If not so lucky, then he will undergo treatment for oligometastatic disease. Fortunately, the cancer was HER2 positive. He decided to forgo esophagectomy surgery for now. It's been 12 weeks since he finished treatment. Hopefully, he won't need "salvage" surgery in the future. 

 

My husband is 71 years old and very active. He's getting stronger every day through exercise. As a result of radiation-pneumonitis, he was evaluated by numerous specialists (pulmonary, urology, endocrinology, infectious disease, cardiology, etc).The endocrinologist switched him from pills to insulin, so diabetes control is much better. Today, he feels  "90% recovered." 

 

Hopefully, there won't be any "new" developments. We greatly appreciate all the people who contribute to this discussion board. Your comments guided our questions during doctor visits. Esophageal cancer is very difficult to understand intellectually, and even more difficult to deal with emotionally. 

 

Comments

  • LorettaMarshall
    LorettaMarshall Member Posts: 662 Member
    "KB"~U R so right~EC is both physically & emotionally draining:(

    Hello "KB"

    It's very late and I have just looked at this site for the first time today.  All I can say now is  my heart breaks for both you and your husband.  You have been, and will continue to be in my prayers.

    Loretta

  • kbdarnall
    kbdarnall Member Posts: 30

    "KB"~U R so right~EC is both physically & emotionally draining:(

    Hello "KB"

    It's very late and I have just looked at this site for the first time today.  All I can say now is  my heart breaks for both you and your husband.  You have been, and will continue to be in my prayers.

    Loretta

    No need to worry

    Actually, my husband is doing quite well and getting stronger every day. We think the "wait and see" approach is reasonable given the circumstances. My husband's lengthy hospitalization gave us plenty of time to study treatment options. He was evaluated by almost every kind of medical specialist in the hospital (cardiology, urology, pulmonary, infectious disease, etc) and now we know most of his other organs are doing great. 

    Recent studies have shown that “salvage” esophagectomy has long-term survival similar to “planned” surgery. If future CT or PET scans reveal cancer within the esophagus, surgery is still an option. However, we would need a very experienced surgeon. 

    https://www.ncbi.nlm.nih.gov/pubmed/28447003

    https://www.ncbi.nlm.nih.gov/pubmed/29417405

     

  • Deathorglory
    Deathorglory Member Posts: 364 Member
    kbdarnall said:

    No need to worry

    Actually, my husband is doing quite well and getting stronger every day. We think the "wait and see" approach is reasonable given the circumstances. My husband's lengthy hospitalization gave us plenty of time to study treatment options. He was evaluated by almost every kind of medical specialist in the hospital (cardiology, urology, pulmonary, infectious disease, etc) and now we know most of his other organs are doing great. 

    Recent studies have shown that “salvage” esophagectomy has long-term survival similar to “planned” surgery. If future CT or PET scans reveal cancer within the esophagus, surgery is still an option. However, we would need a very experienced surgeon. 

    https://www.ncbi.nlm.nih.gov/pubmed/28447003

    https://www.ncbi.nlm.nih.gov/pubmed/29417405

     

    Good to Hear Your News

    Hello,

    It's good to hear of folks doing well.  I hope your husband continues to get stronger and better. Although it sounds like he was put through the wringer with a million tests and specialists, there must be a certain satisfaction in knowing that he is otherwise healthy.

    I have a question.  Is he going to continue receiving herceptin since he is HER2 positive?  Or was it just an adjunct to the carbo/taxol?  

    Wishing the best for you guys,

    Ed

  • kbdarnall
    kbdarnall Member Posts: 30

    Good to Hear Your News

    Hello,

    It's good to hear of folks doing well.  I hope your husband continues to get stronger and better. Although it sounds like he was put through the wringer with a million tests and specialists, there must be a certain satisfaction in knowing that he is otherwise healthy.

    I have a question.  Is he going to continue receiving herceptin since he is HER2 positive?  Or was it just an adjunct to the carbo/taxol?  

    Wishing the best for you guys,

    Ed

    Herceptin not given yet, maybe later

    Charlie's oncologist did not give herceptin for initial therapy. Carbo/taxol was sufficient, he said, for first-line therapy. HER2 treatment should be reserved for recurrent cancer. Drug resistance is a minor risk. Better to avoid unnecessary exposure. Knowing that Charlie is HER2 positive made it easier for him to take the "wait and see" route. He's building up strength for possible battles in the future.

    Last Monday, the radiation oncologist mentioned "oligometastic" disease where less than 5 metatastes appear later. Local therapy (spot treatments) could achieve long-term survival or cure. If recurrence appears in the esophagus, it would be feasible to get "salvage" surgery. Delayed surgery comes with greater risk, but overall survival (assuming he survives surgery) is similar to "planned" surgery done within 5-7 weeks after treatment. 

    You have been an inspiration to many EC patients, including my husband. Thanks for your continuing comments on the discussion board.