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38sallyb's picture
38sallyb
Posts: 100
Joined: Dec 2009

I am a new member on this site, although I have read posts for a couple of weeks.
My husband, Jim, was diagnosed on Oct 27 with T3N1M0 at the GE junction. After
seeing an oncologist locally, we decided to get a second opinion about the best way
to treat this tumor and made an appointment at MD Anderson. Is there anyone
on this board who is now, or has been in the recent past, treated there? We are
pleased with the treatment so far, 2 chemo treatments finished with Taxotere,
Oaxaliplatin and the 5FU, and so far no side effects except some fatigue the day
after. He hasn't lost his hair, been nauseous or had noticeable diarrhea.
We have been VERY pro-active on the nutrition front because he is thin anyway
(and I REALLY wish THAT were MY problem) and we don't want him to lose
any more weight. We are substantially following the South Beach Weight Loss
Diet with no "white" food, no sugar, flour, potatoes, rice. Just whole grains,
fish, turkey/chicken, lots of fruits & vegetables. Is anyone using supplements?
Reading "Beating Cancer With Nutrition?", or any of the other nutrition programs?
He is a VERY young 72. Probably not many on now, as it is VERY late, but I know
there are those who can't sleep either as we walk this very long trail.
Sally

skyhawk
Posts: 19
Joined: Nov 2009

Sally,

I was 42 y/o at dx on April 15, 2008. My local onc told me that it didn't look good and we should go to Anderson for further testing/treatments. My staging was T3N1M0 and Dr. Ajani told me that we were "going for a cure". The chemo cocktail was Xeloda along with Taxotare/radiation for 28 days followed by surgery on August 12, 2008.

I have done very well with no complications though I am only 43 y/o and was in top shape as a firefighter at the time. Out of 40 nodes taken, only 1 showed residual cells and the esophagus was clean. Staging at surgery was T0N1M0. Now the potential problem still remains with N1 as we all know. I have a long way to go to be cured, but I know it is possible.

To answer your question, Anderson is light years ahead of local general oncologist. There are several good facilities around the country, but trust me, you will be well satisfied with their treatment plan. I participated in several studies while there hoping that I could be a part of improving treatment for this disease.

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Sally,

Sorry you have had to join our group here---but you will find support, hope and info here. That does not mean there is no sadness---but we support those that need it and recieve support when needed!

My dad is also a VERY young 71 year old---was retired, but a volunteer firefighter and kind of a handyman. Never really sat still until this last year. I wanted them to go to a really BIG center known for EC treatment---but they left their summer location on the St Lawrence River & went to there winter state-NC & went to Duke. It is still 3 1/2 hours from their home, but they are so pleased. I am a little nervous because things seem a little different than others on this site. My mom and him did not do special nutritional programs---they really had to focus on anything "that would go down" and not bother his stomach.

I guess what I wanted to share with you is this---sometimes it seems that some health professionals see the "age" first and not the "person" (I purposefully did not say patient"). I went with my parents on their appointments to assist and support them.

Make sure they know what kind of guy Jim is---not a couch potato and that he is ready for a fight at each stage. He can always back up if needed... My dad is a stage 3 with local nodes involved and had chemo-radiation & the surgery 12/7 at Duke. HE walked a mile the day after surgery! Basically, he was on a cardiothoracic surgery floor and those patients NEED to walk. So they had rolling walkers, where we could having all these lines, brought the IV pole and walked around the nurses station. I saw a sign that said 18 laps was a mile. He was told to try to walk 3X at least 2 laps each---he decided to do 6 each time! He actually felt better up and moving.... He is going home today, but has a feeding tube and failed first swallow test. They are waiting until 12/30 to do it again.

I think the staff really started to want him get better when they saw his determination!
So I am praying that your hubby can do well also!!!---
kim

38sallyb's picture
38sallyb
Posts: 100
Joined: Dec 2009

Thank you all for posting. We saw the PA today (not the Oncologist) and he was happy with the CBC, all within normal limits, and the fact that Jim has NOT had any side effects except for the fatigue right after 5FU.
The PA was very insistent that the best thing for him to do is to be as active during this time as possible. Maybe we'll have to start dancing again. (We love to square dance.)
Jim has a very positive attitude except about the surgery. My brother-in-law had this same surgery 40 years ago for a non-malignant tumor and, although he was active, didn't do the recreational activities Jim has always enjoyed. Isn't it a shame that the surgery really hasn't changed much since 1969?
I know the technique of MIS has made some changes, but many more improvements have been made in other surgical areas and evidently this is just not "worth the study"...except, of course, for the 16000 who will get this dreadful disease.
We are not relying on nutrition to "cure" a cancer, but it stands to reason that if you can improve your immune system and get your body into top nutritional condition, chemo and radiation will be easier to tolerate.
Problem is the same as with the surgery, not enough people are affected to warrant the studies necessary to make changes. Also, there isn't much money to be made with food instead of drugs. Even the most expensive supplements don't touch the cost of one month's supply of anti cancer drugs.
Glad to get all the feedback. We will try to stay in touch, although it will be me posting. He always had a secretary and has designated me as "communications manager"! :-)

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

We have been very busy...we have a friend coming into town tomorrow (the one we stay w in Houston) and we have much happening with the business, as you can imagine.

Anyway, so we are MD Anderson patients. We were on the same cocktail that you are! And it seemed to have worked quite well for Layne. Our surgery was just Oct 29. I would imagine they will want to do radiation following your chemo, and you'll have some chemo during that to help with the uptake.

You could not be in better hands. You will also find the PA is as knowledgeable as most oncologists in the rest of the country...and you'll get to love your PA and your doc. Yes, stay active, it's important, and yes, up his nutrition. Layne was encouraged to eat, and he ate EVERYTHING ...we didn't do the no sugar thing because the nutritionist told us that calories count right now and the higher the calories the better. So Layne GAINED 26 lbs during chemo and rad. And they came in very handy after surgery.

We use essiac tea and we also do black raspberry powder--you can google and find the most recent studies on that from OSU and LSU. We figure, as you do, it can't hurt, you know?

Layne was out of the hospital at MD Anderson after Ivor Lewis in 8 days. Would have been 7 but he was allergic to his pain meds... They have you walking right after surgery, and they see huge improvements in recovery times with their methods...most of their folks are out in the same time as the minimally evasive. Though, if you can have that and your surgeon recommends it...well go for it. I can say though, that their surgeons are amazing, and we met all but one I think--so you are in good hands no matter what method they choose.

The effects of the oxaliplatin are progressive--so you have to be aware. Layne didn't think he was going to have problems with the cold thing, either...BUT after the 2nd or third time, he could NOT do cold drinks--it was like drinking ground glass...and his fingers didn't like holding cold things. He never got to where he was cold all the time though.

He also never lost his hair. His mouth sores were minimal--he swished with his baking soda and water. His anti nausea meds and ginger tablets kept the nausea down and very tolerable.

When it is time for your next steps, be sure to write! And be sure to have lunch by the piano and enjoy a dance with your hubby. I know I did.

Betty

38sallyb's picture
38sallyb
Posts: 100
Joined: Dec 2009

Thanks, Betty, you have been very helpful, as have all those who posted! I am the 'FOOD POLICE" for now, and keep Jim from drinking cold drinks while on or just after the oaxaliplatin, as we met a fellow who tried iced tea with bad results. So far, he is "letting" me get things from the refrigerator and do the shakes with room temp liquids.
We are used to no sugar, so I didn't feel it was anything unusual and he is getting plenty of calories. We got the Magic Bullet blender and he has 2 shakes per day with Boost, 1 scoop of BioChem Ultimate Protein System, a banana and some blackberries. These average out about 540 calories each, plus meals. On the rest of the days I add a scoop of Carb Smart ice cream. He loves this, drinks it middle of the afternoon and middle of the evening. I'm trying to keep his calorie level at about 3500 per day because he is still active. So far, except for the 6 lbs he lost during all the tests, his weight has remained stable on this plan.
We have moved to more plant protein, including tofu and lots of varieties of beans, and not so much meat, since that is harder for him to swallow. Last night he had a steak and thoroughly enjoyed it, even though it took a LONG time for him to get it down. I just think that food is such an easy way to get healthier and we all can benefit from it.
One thing, I have been reading about aspartame. I know the FDA says it's safe, but it's in EVERYTHING! I read every label and it's amazing. Is anyone else concerned about this?

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

has been linked to cancer. I found that out when I researched SILK milk. Soy products are linked to cancer in many studies, so Layne is no longer doing SILK.

As he does his chemo, it will get much easier to eat.

I hope you have as great an experience at MD Anderson as we have had. We wish we could move to Houston...truly. We love it there.

38sallyb's picture
38sallyb
Posts: 100
Joined: Dec 2009

Thanks, Betty, I saw the warning about soy, but I also researched and it seems to be more linked to reproductive cancers or breast cancer because of the estrogen receptors. I think it's good to know and thanks for reminding me. Tofu is one of those things, you either like it or hate it! LOL He is eating more dense foods and as he goes along is willing to try things that became impossible earlier.

I don't know if you would love Houston right now. We have seen the sun today for the first time in weeks. We've only seen
sunshine 4 days since we arrived on Oct 25th! This is unusual since usually the rains come early summer when it makes Houston STEAM! We are full time RVers and left Colorado to go on the road, so steamy weather is entirely out of our
experience. But since our daughter lives here, we are fortunate to be so close for treatment.

When the radiation/chemo starts next month we'll move the rig close to the hospital as there is a wonderful RV park there. Many of the residents are having treatments and they even have trailers and park models which rent for MUCH less than hotels or apartments. There is also a free shuttle which is very convenient since it goes to all the major hospitals in the Med Center. They really make it easy for people to get around. Park is Lake View RV Resort and is about 4 miles from MD Anderson and the Mays Clinic. The Proton Therapy unit is not in the Med Center proper, but they have free valet parking, so if he gets to be in that program, we'll just drive there.

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

We had a friend who was at that rv park I think. I know where it is! If not, and that one doesn't work out, I know of another very nice one :)

The proton unit is close ...and you won't need valet parking. The parking is all within ten steps of the building. It's GREAT. I can't say enough about proton therapy. And this is coming from a girl who has to PAY for it because our insurance would not. So you can imagine...you'd have to really believe in it. I do.

You'll be there in Jan then. Perhaps we can do lunch!

Betty

ps yeah, we did Houston in July/Aug for proton. WOW. I thought I knew hot...until then. I prefer our dry heat :)

38sallyb's picture
38sallyb
Posts: 100
Joined: Dec 2009

We'll plan on it!...Lunch, I mean. I'm hoping for the Proton. Don't know why they are reluctant, from what I read, Medicare usually covers it. Jim has NO prior problems, no heart, lung or spine in any way and we'd like to keep it that way. Even the radiation oncologist said that it would probably cause some heart/lung "difficulties" when they use the photon therapy while the proton generally minimizes that. Where is Layne's tumor? Jim's is at the GE junction with one lymph node positive and another probable

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

Well, who is your radiologist? We had Komaki. We love her to pieces.

Layne's is same place--ge junction with positive nodes, his celiac nodes made him stage IVm1a.

Yes, Medicare will cover it. Unfortunately, United Health will not. Ugh. And yes, it does minimize damage and they can send a large dose of radiation to the effected area while protecting surrounding tissues.

38sallyb's picture
38sallyb
Posts: 100
Joined: Dec 2009

Thanks Sherri,
This is very helpful. Is EVERYONE but Betty married to Jim???? :-)

Jim only drinks what I juice, reverse osmosis purified water, green tea, and pomegranate (I buy that, it's too messy to juice). Jim said last evening that the swallowing is MUCH improved. He did have a steak last night and got along just great. We have VERY little red meat (so the steak was a real treat) mostly turkey, fish of all kinds, shrimp and chicken. I found a great bean soup mixture that he likes with Cajun seasonings. When he has the radiation, he might not be so happy with spicy but right now that's what is appealing.

I guess I don't understand why they are concerned about ginger root. Evidently Thai food would be off limits? We asked the nutritionist about supplements and she said the evidence isn't in and that they might hinder the effects of the radiation or chemo. All the literature I have read over the years suggests otherwise, so we are conflicted about what to think.

This is all such a learning process for us, and since everyone is different it is difficult to know why some are getting some chemo/radiation and others are on a completely different program. I'm the kind of person who has to know WHY we're supposed to do this and why we are NOT supposed to do something else!

My email is jimsallyb@gmail.com and I'll answer if you have specifics you want to discuss. Thanks to everyone who posts, we really appreciate your input.
Sally and Jim

NanseB
Posts: 17
Joined: Oct 2009

My mom has Ec and I will pass your info on to her.

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