Recently Diagnosed w EC T2N0M0

JessicaAnn

Hi,
New to the site but have been reading up on EC and this site has raised many questions.

My father in law was diagnosed w EC less than 2 weeks ago. T2N0M0. He's 84 and in overall good health. Has some heart issues (m/v prolapse replacement about 10 yrs ago) and type II diabetes. Due to his age, surgery is not an option. Apparently the mass is quite large altho I still don't know *how* large. They (he and his wife) seeked out 2 opinions--one prescribed the taxol/carbo and the other 5FU.


Monday 1/3 he's scheduled to begin chemo (taxol/carbo) and radiation treatment. Seems the side effects of this cocktail will be less than 5FU.

Some things I've read on these discussions that have raised questions....

CyberKnife - does this require surgery (to place the markers/receivers? -- not sure of the correct medical jargon) for this procedure?

JTube- this sounds preferable to the GTube. Do both require surgery? If so, is one less invasive than the other?

That's all for now. Thank you!

Unknown

This comment has been removed by the Moderator

JessicaAnn

unknown said:

This comment has been removed by the Moderator

Additional notes on FT2N0M0
Thank you William in advance! I truly appreciate all your input to others on this site. Sounds like you had quite the difficult journey as well.

A couple additions/thoughts I had since my posting....

Do you have an opinion on the treatment that my FIL (father in law) will start this coming Monday? That's the taxol/carbol once a week for 5 1/2 weeks and external beam radiation 5 times a week (20 radiation tx's total). The other dr's opinion was to give the 5-FU. It's my understanding that this (5FU) is a more tried and true method as it's been around for so long and thus with many statistics but the side effects could be more severe. Where the taxol/carbo doesn't have as much data for treating EC specifically.

I've read about the 3-pronged approach re. chemo drugs. Perhaps my FIL's age (84) is a reason the dr is just using 2-taxol/carbo??

Based on postings here, my FIL is extremely fortunate that he has a 0 factor on the N and M staging. For that, I'm very grateful!

FIL had his porto-cath put in yesterday and all went well.

The chemo tx takes about 4-1/2 hrs but a bulk of that time is for hydration.
Can you give me some idea when he'll start feeling the side effects of the tx? Feeling it to a point where perhaps help in the home might be required. My MIL will provide assistance as best she can but she can only taken on so much physically, and emotionally. The kids (me included) all live far away (flight required) so the majority of his care will fall on my MIL.

The dr mentioned that they will use dexamethason (sp?) to help w the side effects and from what I've read that will bring some relief and help with appetite.

Also, his tumor is an adenocarcinoma, located at the base of his esophagus near the juncture where esophagus and stomach meet.

Any words of wisdom as to what to expect; things that helped you or you've heard from others; anything that you think I could use in my arsenal to pass on to help getting through this.

Thank you!

unclaw2002

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

JessicaAnn

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

Cindy,
Thank you so much for
Cindy,
Thank you so much for your post.

My FIL is going to receive tx from Missouri Cancer Assooc. While the dr. doesn't have the greatest "bedside manner" he is very well educated and experienced and dealing w about 5-6 EC cases a year. I believe my FIL will be in good hands. Good question though!

As part of his chemo therapy, a bulk of the treatment will be hydration. Thanks for highlighting this--as he'll need to keep hydrated on his own as well. Did your dad receive hydration as part of his chemo tx too? If so, he still suffered from dehydration?

His daughter and son are very involved with the dr. and the treatment. Their daughter is there with them currently and will be for the 1st chemo/rad tx. I'm sort of in the background and just doing as much research and data-gathering as possible, and passing it on as I see fit.

FIL is very active and gets along very well for 84. The consensus is that surgery (at least what they're saying now) is not an option due to his age. We haven't pushed for it either. We'll see how the treatment goes and post testing and see how the tumor is reacting.

Do you know how invasive/difficulty the J-tube surgery is? I just wonder if they'll be able to do this for him. I've read the G-tube is just not nearly as effective since it goes right into the stomach vs. the J-tube / small intestine.

Thanks again for your input and sharing your experience. I'll be in touch.

Jessica