Recently Diagnosed w EC T2N0M0

unknown said:

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unclaw2002 said:

Hi Jessica,Welcome to our
Hi Jessica,

Welcome to our family. Where does your FIL live and where is he being treated? Is it a cancer center that specialized in Esophageal Cancer. Knowing some of these things can help us give you better advice.

My father, now 79 was diagnosed with T3, N1, MO in December of 2009. He underwent 3 cycles of Taxol/Carboplatin and 28 radiation treatments. He was very active prior to his EC diagnosis and had Type II diabetes and high blood pressure both controlled by medicine. By the way he no longer has high blood pressure.

Before you read on . . . understand that everyone is different, everyone reacts differently to chemotherapy and radiation. What I am sharing is what happened to my dad but your father in law could have a totally different experience. While their other medical conditions complicate the treatment plan, their attitude and physical activity level do have an impact on how they do. And each person is an individual with a unique experience.

Because of my dad's diabetes the doctors chose the Carboplatin instead of the Cisplatin. My understanding is that the three chemotherapy agent is the optimum treatment when possible. However, because of age and medical complications the doctors did not feel that he could deal with the side effects of the three chemo regime. The Cisplatin has significant side effects to the kidneys and hearing (the kidneys a problem because of the diabetes and the hearing because of his age).

The chemo and radiation had serious side effects on my father, he ended up hospitalized because of dehydration problems, he had a stent inserted and that fell into his stomach twice, his blood counts went down and he needed infusions (both blood and platelets). He didn't get enough hydration and didn't drink enough because it was painful. The results were horrible and debilitating so I would urge you to have your MIL watch for any signs that your FIL isn't getting enough liquids and get him to the hospital immediately. We were lucky that my dad pulled through but there were days we thought we were going to lose him for something as simple as him not drinking enough water. To answer another question you had --- yes get a JTube now before your FIL is unable to handle the procedure to put one in.

My father also had 5FU as a single agent (again my understanding is that this is usually used in combination with several other agents) but they didn't think he could tolerate the other agents and as fate would have it he wasn't. The 5FU drove his platelet counts so low that he couldn't continue that chemotherapy drug.

The radiation was effective and shrunk my dad's tumor. He had some pretty serious side effects from the radiation but it is hard sometimes to tell what is from the chemo and what is from the radiation. He did have sunburn like spots on his skin, and pain in his esophagus from the radiation.

One of the important things about the chemo/radiation treatments is that they are taken consistently on schedule, when dosages have to be lowered or treatments skipped because you are sick, blood counts too low or other complications it lowers the effectiveness of the chemo. So having the right combination, dosage and agents is essential to fighting this monster and a delicate balancing act. I have to remind myself that these are toxic drugs that are killing the good as well as the bad.

While the doctors say your FIL is not a candidate for surgery I wonder if they are only considering the Ivor Lewis. If your FIL is strong enough the MIE might be a possibility. I certainly wouldn't consider the Ivor Lewis but might look at the MIE. Of course I don't know your FIL's health strength or other factors. I have learned over the last year that blanket statements made generally should be questioned. At the end of the day you may decide to follow the advice or recommendation but you don't just blindly follow the doctors.

As for air plane rides away --- I understand that problem. I live in Delaware and my dad lives in New Orleans. Right now he is in a clinical trial in Houston. Talk about airline miles Anyway you should make sure that your FIL authorizes you and your husband, and any other siblings or close friends who will be helping out with his care the ability to discuss his medical issues with the doctors and insurance companies. This is critical so that you can help out with appointments, etc. and also receive medical information directly from the doctors. Also, I would make sure someone is always along during the appointments with the doctors (and it might need to be someone in addition to your MIL) because it is amazing what the patient does and doesn't hear and does and doesn't ask because those appointments can be stressful and overwhelming. Writing everything down, and stoping the doctor to get the correct spelling of drugs etc. is vital so you can digest when you get home.

And finally, while we are loving and supportive children our parents don't always want to take our advice. Sometimes one of the hardest things you have to do is to sit back and watch as they make decisions that sometimes we would rather they not make along this journey. It is their life and they have the right to make those decisions but it doesn't make it any easier when you think they are making a mistake.

If you have any specific questions please don't hesistate to contact me directly. Good luck and again welcome.

Best,
Cindy