New diagnosis - stage 3, questions abt treatment, fasting and VA

Karrie42

Hello all,

My Dad had a CAT scan yesterday and an ultrasound today. The doctor said it was stage 3 (he did give the specifics, but from what I can figure out he is a T3, N0 (or 1, they couldn't tes the lymph nodes right below his tumor because they couldn't get to them) and M0. He is a very healthy 67 year old vet.

We are so new at this and feel a bit overwhelmed with both too much info (trying to read and understand it all) and too little info (how much to push for certain treatments, etc.)

His VA doctor in Roseburg, OR is supposed to call tomorrow to talk about treatment options. Any thoughts/advice/things we should know before this conversation?

Also, I know that if we are able to do surgery, the experience of the team is essential. They said they will send Dad to the VA hospital in portland, which is attached to OHSU. The doctor said the VA docs and the OHSU docs will work as a team, but I'm worried that Dad won't get the top doctors. Any experience?

And finally, I've been reading recent research on fasting before chemo. Any experience with this as well?

Sorry to jump on and instantly ask so many questions - we are just feeling our way in the dark around here!!

Thanks!!

- Karrie

TerryV

Hate to say it, Carrie, but....
"Welcome" to (in my opinion) THE most informed, most caring EC forum on the 'Net. We ask a lot of questions, but we try to "give value" back to you in the quality of our reponses.

My 48 y.o. husband was diagnosed as a Stage 3, T3N1M0 survivor in May 2011. His treatment regime was 28 radiations (6 weeks Mon - Fri) with weeks 2 & 5 spent inpatient for Cisplatin & 5FU chemo. Everyone's regime is slightly different and will depend on your dad's health, DNA of the EC, etc.

Has your dad considered getting a 2nd opinion? EC is still relatively unknown in some areas and the original consulting physician may not have complete information. Confirmation of diagnosis and staging is a great idea for peace of mind.

I don't recall reading anything about fasting prior to chemo. Having watched Nick go through it, I would suggest that chemo by itself causes fasting. Chemo changes food desires. I would think that eating and eating as much as your dad wants would be recommended whenever he can. So much of EC has to do with inability to eat, or struggles to eat, or treatment has changed desire/ability to eat - so eat when you can.

Others will come back with additional questions and additional recommendations. The major thing to remember with what you read on the Internet or what you read here is that everyone is a statistic of ONE.

Love & Hugs to your father and the entire family!

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads / 2 weeks inpatient Cisplatin & 5 FU
THE 09/08/11
Clean Path 09/13/11

Karrie42

TerryV said:

Hate to say it, Carrie, but....
"Welcome" to (in my opinion) THE most informed, most caring EC forum on the 'Net. We ask a lot of questions, but we try to "give value" back to you in the quality of our reponses.

My 48 y.o. husband was diagnosed as a Stage 3, T3N1M0 survivor in May 2011. His treatment regime was 28 radiations (6 weeks Mon - Fri) with weeks 2 & 5 spent inpatient for Cisplatin & 5FU chemo. Everyone's regime is slightly different and will depend on your dad's health, DNA of the EC, etc.

Has your dad considered getting a 2nd opinion? EC is still relatively unknown in some areas and the original consulting physician may not have complete information. Confirmation of diagnosis and staging is a great idea for peace of mind.

I don't recall reading anything about fasting prior to chemo. Having watched Nick go through it, I would suggest that chemo by itself causes fasting. Chemo changes food desires. I would think that eating and eating as much as your dad wants would be recommended whenever he can. So much of EC has to do with inability to eat, or struggles to eat, or treatment has changed desire/ability to eat - so eat when you can.

Others will come back with additional questions and additional recommendations. The major thing to remember with what you read on the Internet or what you read here is that everyone is a statistic of ONE.

Love & Hugs to your father and the entire family!

Terry
wife to Nick, age 48
dx 05/19/11 T3N1M0
28 rads / 2 weeks inpatient Cisplatin & 5 FU
THE 09/08/11
Clean Path 09/13/11

feeling very welcomed...
Hi Terry,

Thanks so much for your quick reply. I teared up right away reading your "welcome" - we feel really alone out here, and this helped.

I know the doctors at OHSU are top researchers/surgeons for EC, but I'm not sure how much his VA doctor in Roseburg knows (he was very open and competent in my short interactions with him). I'm just hoping we get to connect to really good people in portland. I think the staging is pretty accurate. They sent us to a special clinic that specializing in the staging. I can ask about getting a second option, though, if you feel this is important!

Here is the info I read on fasting: http://www.medicalnewstoday.com/articles/241518.php

Thanks again,

- Karrie

Callaloo

Dr.Dolan, OHSU
I hope "Linda 1120" sees your post and replies. Her husband had the MIE performed by the team at OHSU led by Dr. Dolan and were very happy with his treatment and the outcome.

As for fasting before chemo, I've never heard of that. Seems counterproductive since chemo is going to prevent most eating anyway. Now is the time to consume as many calories as he can get down---whole milk, not skim, cream, rich carbs, Before chemo, I loaded up on 3 egg avocado and cream cheese omelettes. I still dropped to 90 lbs while on chemo. So I wouldn't do any fasting at this point.

But others who are more knowledgeable will chime in.

Good luck to you both, and our thoughts and prayers are with you as you go through this. Just know that you're one of the lucky ones,

Lu,
Stage IV

TerryV

Karrie42 said:

feeling very welcomed...
Hi Terry,

Thanks so much for your quick reply. I teared up right away reading your "welcome" - we feel really alone out here, and this helped.

I know the doctors at OHSU are top researchers/surgeons for EC, but I'm not sure how much his VA doctor in Roseburg knows (he was very open and competent in my short interactions with him). I'm just hoping we get to connect to really good people in portland. I think the staging is pretty accurate. They sent us to a special clinic that specializing in the staging. I can ask about getting a second option, though, if you feel this is important!

Here is the info I read on fasting: http://www.medicalnewstoday.com/articles/241518.php

Thanks again,

- Karrie

You aren't alone here!
We all felt alone when we started this path. But now, almost one year after diagnosis, I feel that I have a very strong family of support here at the forum. We have laughed, cryed, and prayed with one another through the year. We've rejoiced and fallen apart together. One thing about being here - there is *someone* here traveling your path as well. They know what you are going through - You are NOT alone.

We didn't have a 2nd opinion, but Nick was very confident in the abilities of his doctors and didn't want to pursue other options. I figured why shake his confidence? He needed to go into treatment and surgery with the most positive of outlooks - who am I need to muddle with that. I've got no experience with VA docs, but have heard good things about OHSU. The VA alone might be good for rads & chemo, but I would want the most experienced team of oncologist and surgeon I could get my hands on. Perhaps a joint team of VA & OHSU would be quality. There are sites you can use to research the doc's experience.

Considering how many eating problems EC causes and the typical weight loss associated with EC, I'm not sure about how recommended the fasting before chemo would be. Suggest you print the article and review it with his Oncologist.

Ask any questions you've got. Someone will be here with answers for you.

Terry

btw, apologies for misspelling Karrie the 1st time through. I've got it now

nickgunboat

Hi Karrie
Sorry to hear about your Dad. You have come to the right place for info and support. I don't have much to add, so here it is.

I think that fasting before Chemo sounds a bit like showing up early for a prison sentence. Eat! Fatten up and enjoy some of the foods that will eventually work they're way off the menu. (Dairy, like ice cream and milk. Two of my faves that I couldn't tolerate after chemo/rad/surgery. But guess what, they are making a small but determined comeback!) Anyway, this is of course NOT medical advice, just my experience. EC will change the way your Dad eats. Period. I think that someone already said that chemo will cause fasting anyway, so why rush it. Just my 2 cents.

My surgery, an En Bloc Esophagectomy with gastric pullup, was performed by Dr. Tom DeMeester at USC in 2009. Lucky for me he was a family friend and agreed to take me on as one of his last patients. He has since retired. His son Steve is now my doctor for follow ups etc. All I can say is the team at USC is fantastic. They perform quite a large number of these types of surgery every year, something you want in your surgical team. So if you are shopping around, and willing to travel (I live in D.C., lots of flying but worth it, thank you Visa) drop by the USC website and check them out.

http://keck.usc.edu/

Good luck....

Kirk

monica_sss

Bulk Up
Hello Karrie, There are a lot of folks here that know far more about the ins and outs of treatment than I do. I just wanted to reply, as a daughter of a stage 3 EC Mom, the weight loss has been fast and scary. Mom had a small reprieve after her 3rd round of chemo where she was able to eat comfortably, but for the most part eating has been a struggle. She's lost nearly 40 lbs. since December. We often talk about being grateful that she was slightly overweight when this all began. From my layman's perspective I can't imagine how fasting could possibly be beneficial. I'll take a look at your link about it. Best of luck to you and Dad.

JReed

Welcome Karrie
Hi Karrie:

Your post sounds like the first one most of us have posted on here. I had so many questions and the pioneers here answered so many of them and even gave me information for just in case I needed it down the road.

My husband is T3N1M0 and just completed six weeks of radiation and five weekly chemo treatments - the first couple of chemo's really were the worst - the docs got a handle on his symptoms right away and for the most part Don has done quite well. He will likely be scheduled for surgery mid-March at Univ of Michigan in Ann Arbor, MI. Our radiation and chemo oncologists repeated several times to us that now is not the time go on a diet - eat as healthy as possible - but eat what you want when you can. The chemo and/or radiation have really changed Don's taste and smell senses. Things he used to like - he cannot stand to look at (coffee was the first noticeable thing that he could no longer tolerate).

We have learned to buy in small quantities - because what he liked today - he will not want again. Eating is so challenging for most EC survivors (I also found out from the pioneers that you are an EC survivor from the moment the diagnosis is made). I still tend to say EC patient - I don't know if that is offensive to our survivors or not. You and your family are now caregivers.

I did not hesitate to ask our doctors questions and wrote their responses down. Our doctors were not at all offended and in fact, seemed glad to have us ask the questions. For example, I asked the surgeon Dr. Reddy - how many of these have you yourself performed. Why are you better than Dr. Luketich and his staff at UPMC and how does Univ of Mich compare to MD Anderson and Mayo Clinic.

Just be sure (101%) you are confident in your team and if anything seems hinky or out of the ordinary from what you've seen here - be sure to check it out. Everyone on this site is sooooo very helpful and at least one person is pretty sure to have gone through what you are going through and will at least have their story to share with you.

We welcome you (though as we all say - sorry you had to find us but so glad you did!). Be sure to set up a pocket file with places for test results, medications, appointments, and if possible a separate tab for each doctor. I was able to find a perfect folder at K-Mart and Freida that posts on here was given a wonderful folder from MD Anderson Cancer Center.

Please stop by and post any questions, concerns, or share your story with us any time - we all ride this roller coaster together.

Hugs from Michigan,
Judy

Unknown

This comment has been removed by the Moderator

Karrie42

unknown said:

This comment has been removed by the Moderator

PET scan?
Thanks everyone for your kind comments! I am so glad I found this community.

So the rollercoaster has begun. We were supposed to go up to the VA hospital in portland next week to talk about starting neoadjunct therapy - and the oncologist up there was just put a pause on that until we get a PET scan. I thought he was cleared of any chances of stage 4 after his CT scan (showed nothing in the rest of his body) - but they said they couldn't access the "access nodes" right below his tumor, and so want to also do a PET scan. I'm really frustrated right now, especially as they said earlier he was given a "T3" label,, but that it was close to being T4. I want to zap this thing before it gets to that! But now we have to wait.

Thanks again. Just being able to write this to people who understand is helpful in itself!

- Karrie

Karrie42

JReed said:

Welcome Karrie
Hi Karrie:

Your post sounds like the first one most of us have posted on here. I had so many questions and the pioneers here answered so many of them and even gave me information for just in case I needed it down the road.

My husband is T3N1M0 and just completed six weeks of radiation and five weekly chemo treatments - the first couple of chemo's really were the worst - the docs got a handle on his symptoms right away and for the most part Don has done quite well. He will likely be scheduled for surgery mid-March at Univ of Michigan in Ann Arbor, MI. Our radiation and chemo oncologists repeated several times to us that now is not the time go on a diet - eat as healthy as possible - but eat what you want when you can. The chemo and/or radiation have really changed Don's taste and smell senses. Things he used to like - he cannot stand to look at (coffee was the first noticeable thing that he could no longer tolerate).

We have learned to buy in small quantities - because what he liked today - he will not want again. Eating is so challenging for most EC survivors (I also found out from the pioneers that you are an EC survivor from the moment the diagnosis is made). I still tend to say EC patient - I don't know if that is offensive to our survivors or not. You and your family are now caregivers.

I did not hesitate to ask our doctors questions and wrote their responses down. Our doctors were not at all offended and in fact, seemed glad to have us ask the questions. For example, I asked the surgeon Dr. Reddy - how many of these have you yourself performed. Why are you better than Dr. Luketich and his staff at UPMC and how does Univ of Mich compare to MD Anderson and Mayo Clinic.

Just be sure (101%) you are confident in your team and if anything seems hinky or out of the ordinary from what you've seen here - be sure to check it out. Everyone on this site is sooooo very helpful and at least one person is pretty sure to have gone through what you are going through and will at least have their story to share with you.

We welcome you (though as we all say - sorry you had to find us but so glad you did!). Be sure to set up a pocket file with places for test results, medications, appointments, and if possible a separate tab for each doctor. I was able to find a perfect folder at K-Mart and Freida that posts on here was given a wonderful folder from MD Anderson Cancer Center.

Please stop by and post any questions, concerns, or share your story with us any time - we all ride this roller coaster together.

Hugs from Michigan,
Judy

thanks Judy!
Thanks for your response - its good to see another person with the same labels (T3N1M0). How long did it take to get things started? I am sitting here worried that every day we don't zap this thing is a chance for it to get bigger!

I've started the pocket file already. :-)

- Karrie

TerryV

Karrie42 said:

PET scan?
Thanks everyone for your kind comments! I am so glad I found this community.

So the rollercoaster has begun. We were supposed to go up to the VA hospital in portland next week to talk about starting neoadjunct therapy - and the oncologist up there was just put a pause on that until we get a PET scan. I thought he was cleared of any chances of stage 4 after his CT scan (showed nothing in the rest of his body) - but they said they couldn't access the "access nodes" right below his tumor, and so want to also do a PET scan. I'm really frustrated right now, especially as they said earlier he was given a "T3" label,, but that it was close to being T4. I want to zap this thing before it gets to that! But now we have to wait.

Thanks again. Just being able to write this to people who understand is helpful in itself!

- Karrie

Thinking of you
Karrie - I believe Jerry Wright (he writes as JGWright) is a Stage 3 with a T4 number. Please realize that it's the M that needs to remain 0 to stay out of the Stage 4 range. Jerry was originally misdiagnosed as a Stage 4 but a 2nd opinion brought him back to a Stage 3. You might search backwards for Jerry's posts. You might find them informative.

A sooner start than later is always good, but you've got things rolling now. Just keep them rolling and don't let them stall. I believe PET results can be had rather quickly so it shouldn't delay rads or chemo.

Our prayers go with you & the family!

Terry

JReed

Karrie42 said:

thanks Judy!
Thanks for your response - its good to see another person with the same labels (T3N1M0). How long did it take to get things started? I am sitting here worried that every day we don't zap this thing is a chance for it to get bigger!

I've started the pocket file already. :-)

- Karrie

How long did it take?
Hi Karrie:

Well, I just typed this big long answer for you and wouldn't you know - I screwed something up and blew it all away.

The wait took too long in my opinion. Don was diagnosed on November 21, 2011 and his first radiation treatment was Jan. 4th with first chemo on Jan. 5th.

We lost time due to the Thanksgiving, Christmas and New Year holidays. We were so scared that it was taking too long (I still think it did) - but Don had to be measured and tattooed for radiation - which is very important because you definately want the tumor to be targeted correctly. Also during the wait, Don had a porta-cath installed for the chemo treatments. This is installed in much the same way as a pacemaker - it is all under the skin with nothing sticking out. A real Godsend for the patient - a lot less pain with this porta-cath - all of Don's anti-nausea, antihistamines and chemo are administered through this porta-cath. Usually blood draws are done through this also - but the nurses at our laboratory are not trained to draw blood through the porta-cath.

I know the anxiety you are experiencing - I posted on here how frustrating it was and I actually kind of lost it with the nurses at the cancer center. They tell you how aggressive this cancer is, how you need to act quickly - and then, you sit around waiting and waiting for something to get started. They cannot tell you exactly when this cancer changes from stage 3 to stage IV - so that was our concern. Of course, the minute you hear you have cancer, you want it out of your body right now! not tomorrow, now!

The wait is very, very difficult and seems like there is no end to the tests and waiting. Paul Adams and a few others calmed me down and reassured me that a few weeks wouldn't matter, but getting things done correctly would greatly matter. We are very optimistic that treatment has done it's job and we'll find out for certain in a couple of weeks. Don was able to swallow better in the last couple of weeks and has done very well handling the radiation and chemo treatments. I trust and will pray that all goes as well, if not better, for your dad.

Remember - don't be afraid to ask your doctors about the waiting time - they should have explanations and answers for all of your questions.

Please keep us posted with what is going on for your dad. The PET scan, CT scan and EUS were all used in staging the cancer for Don. The PET scan is so detailed and will give the doctor even more information so I would be glad this is being done.

Thinking about you and waiting to hear what's next in your journey.

Hugs,
Judy

Karrie42

TerryV said:

Thinking of you
Karrie - I believe Jerry Wright (he writes as JGWright) is a Stage 3 with a T4 number. Please realize that it's the M that needs to remain 0 to stay out of the Stage 4 range. Jerry was originally misdiagnosed as a Stage 4 but a 2nd opinion brought him back to a Stage 3. You might search backwards for Jerry's posts. You might find them informative.

A sooner start than later is always good, but you've got things rolling now. Just keep them rolling and don't let them stall. I believe PET results can be had rather quickly so it shouldn't delay rads or chemo.

Our prayers go with you & the family!

Terry

Hi Terry
Hi Terry,

Thanks for replying again.

I just wish they would stick with the CT scan and go with the stage 3. We were supposed to schedule for starting radiation and having a consult with the surgeon up at OHSU when they paused that to get the PET scan. I talked to the surgeon's nurse and he said that because the tumor looked so large, they couldn't believe that it was really only stage 3. So they are doing the PET scan to double-check. It may be the right thing to do on their end, but I don't have to like it. Emotionally (not logically) it feels like they are trying to find a way to stage him at 4. They've scheduled the PET scan for monday afternoon, so I guess we will find out then.

The prayers are appreciated - and go both ways.

- Karrie

captdave

Karrie, being in OR i would
Karrie, being in OR i would consider coming to the University of Washington and Talking to Mike Mulligan. He is an incrediabley talanted surgeon who practices at the Seattle VA. he preformed my esophagectomy two months ago and he has also preformed one on my cousin who was stage four when no one else would touch him for surgery. My cousin is very happy with his results thee to four years after his surgery. I dont know about OHSU but i do know that UW medical center and Dr. Mulligan are among the best in the world and I would not hesitate to send any of my family to them.

Best wishes for you and your father,
David

Rick0311

Hang in there!
Karrie

The staging process can be very long and arduous but it is very necessary in the treatment process. The more accurate the staging and the more test results the Doctors have the better the treatment plan. I know how frustrating the whole process can be but hang in there and just remember that it is all worth getting a good staging to build a good plan. My thoughts and prayers are with you, your family and your Dad.

Richard (Rick) Watson
Neoga, Illinois

DX – 0411
EC – T2N2M0
Chemo – Cisplatin, four treatments
5FU, four treatments, five days times 24 hours each time
MIE – 083111
Barnes Hospital, St Louis
Dr Brian Meyer
NED