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Trying to hang in there!

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

Diagnosis T3, N1, M0-May 17, 2011
My husband is really struggling with pain, fatigue and having a hard time eating. He has completed 23 radiation treatments, concurrent with 5fu and 2 rounds of cisplatin. The pain has gotten really bad the last couple of days and he is trying to eat but I am not sure that he is getting enough calories. I did get approval (from insurance co.) to go out of network for a 2nd opinion from a surgeon at Moffitt in Tampa Florida. Moffitt does the MIE surgery. The surgeon we meet with (in network) does Ivor/Lewis. I spent the last two weekends cooking, trying to come up with high calorie meals that he can get down. John (retired) was the main cook in the house (before EC). I work full time and I am trying to keep up with cooking cleaning etc, this is quite the life style change. I feel so bad for him and I am so tired and we have such a long way to go. Don’t know what else I can do for him. He has always been able to take a lot of pain so this must be excruciating pain for him to be so miserable. One day at a time is now my motto. I do not know what else to do. Thanks for listening Erica

zinniemay's picture
zinniemay
Posts: 534
Joined: Mar 2009

Erica, My hubby dx Jan 09 T4N1Mo, , Larynx cancer. He had 7 weeks of Rads and Cisplatin. I know it is very hard. My hubby did get very sick he lost over 50 pounds. but good news he is still fighting. I don't know anyother way to say it but take it one day at a time. My hubby hated Potatoe soup before Rads and Chemo but after he was done , he could eat it and he seam to like it.Very easy to make. I am not very good at telling people what to do or how to do it. We are all just doing the best we can each day. I know how you feel. MY hubby never sick a day. Strong will guy! So hang in there you will see better days. Just take it like you said one day at a time.
Jennie

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

Jennie,
Thank you for the support! I feel helpless sometimes and it is nice to know that others understand!

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Diagnosis May 19, 2011 Stage 3 Lower Esophagus (sorry, haven't ever heard the T or N info)

It sounds like my husband is going through the same regime, Erica. Although we are behind where your spouse is. My hubby just completed his 10th radiation and the 1st round of cisplatin with 5fu.

Has your spouse not been fitted with a J-tube? That's something our surgeon wanted done before radiation even started. Nick has been using the feeding tube for 1 week now trying to get his intestine prepared to be the "food source" during the times when the tumor makes eating impossible as well as for the surgery/post surgery period.

Even just 10 days into his treatment, I've seen lifestyle changes here. Our motto is similar - one foot in front of the other.

Best of luck to you and John! You're in our thoughts

Terry

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

The physicians spoke to my husband about feeding tube but did not say he had to have one. He has been holding his own with his weight, not sure if he will be able to keep his weight up though. He has always weighted 160-165 lbs he is 6 ft. tall. The reason his primary care physician sent him to a GI doctor the same day he went to see him for epigastric pain was because he weighted 148lbs. When he received diagnosis and we started to meet with the oncologist they stressed that he needed to eat and he did gain about 5 lbs. Last Monday he was back down to 148lbs. He & I were both surprised that he had lost weight because he had increased his intake and started eating high calorie, higher fat foods. Even though John has always been thin he has struggled with high cholesterol and hypertension. He had a stroke 5 years ago (at age 54). He totally changed his eating habits went on a vitamin regimen and started working out. His goal was to walk “normal” again. He started to enjoy working out and the last 6-12 months has gone to the gym 7 days a week for 3-4 hour a day. He attributed the weight lost to how much he worked out. I kept telling him to eat more or back off on exercise little did we know that it was cancer (not exercise) that was effecting his weight. John sees both oncologists tomorrow so we will see what they say regarding weight, nutrition. I continue to hope for the best but as I type this he is back in bed again. He has never spent this much time in bed ever. He is just in so much pain and looks so pale.
I copied the explanation from the American Cancer society regarding the staging categories. John had and endoscopic ultrasound (that is how his cancer was staged).
T stages
Tis: The cancer is only in the epithelium (the top layer of cells lining the esophagus). It has not started growing into the deeper layers. This stage is also known as high-grade dysplasia. In the past it was called carcinoma in situ.
T1: The cancer is growing into the tissue under the epithelium, such as the lamina propria, muscularis mucosa, or submucosa.
T2: The cancer is growing into the muscle layer (muscularis propria).
T3: The cancer is growing into the outer layer of tissue covering the esophagus (the adventitia).
T4: The cancer is growing into nearby structures.
T4a: The cancer is growing into the pleura (the tissue covering the lungs), the pericardium (the tissue covering the heart), or the diaphragm (the muscle powering the lungs). The cancer can be removed with surgery.
T4b: The cancer cannot be removed with surgery because it has grown into the trachea (windpipe), the aorta (the large blood vessel coming from the heart), the spine, or other crucial structures.
N stages
N0: The cancer has not spread (metastasized) to nearby lymph nodes.
N1: The cancer has spread to 1 or 2 nearby lymph nodes.
N2: The cancer has spread to 3 to 6 nearby lymph nodes.
N3: The cancer has spread to 7 or more nearby lymph nodes.
M stages
M0: The cancer has not spread (metastasized) to distant organs or lymph nodes.
M1: The cancer has spread to distant lymph nodes and/or other organs.

Good luck to you and your hubby too.
Thank you for taking the time to reply to my post. It is nice to know that we have others to lean on.
Erica

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

Erica,

I appreciate the info on T, N, and M. I know Nick is M0 (thank goodness!) and I'm sure that there are numbers behind the T & the N - now just to find out what those are....

Keeping you (and others here) in our thoughts!

Terry

hopper52's picture
hopper52
Posts: 117
Joined: Apr 2011

T3N0M0 April 2011. One day at a time has to be my motto. I'm 26 of 28 rads completed along with 2 cisplatin infusions along with Xeloda (pill form of 5FU). My swallowing has improved in the past week but I am extremely tired and nothing is appetizing. It's a bear when you know you need to eat but just can't stomach it. I'm down to 175 from 205 in April and still plugging away.

I'll be having my surgery probably in late August at Moffitt in Tampa. The surgeon is Dr James Meredith who does the MIE. Just waiting on these last two radiations and then the PET/CT. Tell hubby to keep his head up. I've found great encouragement on this site.

And to think.....I used to like Ben and Jerry's.

Ericalynn's picture
Ericalynn
Posts: 207
Joined: Jun 2011

We have an appointment with Dr. Meredith on July 13 I am hoping that John is a canidate for MIE. Then I will have to appeal again to insurance company to have surgery at Moffitt. I have heard very good things about Dr. Meredith. Thank you for the support.

hopper52's picture
hopper52
Posts: 117
Joined: Apr 2011

Sorry......got Dr Meredith's name wrong. It's Kenneth Meredith, not James. My first consult back in April went very well with him. Took time to listen to and explain all my questions, not only to me but to his assistants he had with him. Very professional dude from what I see.

lindadanis
Posts: 267
Joined: Nov 2009

Hi, I was reading your story and it sounded so much like what I went through a couple of years ago. I found out the exact same way and almost did fall on the floor. He did the same chemo and it is a very tough regimen to go through. Unfortunately, I lost my husband nine months ago. He did do chemo and radiation, if you ever want to talk to me, please conaact me or p/m me ok.

Best of luck and hang in there. it is not easy.

Linda

Alaska_Kim
Posts: 35
Joined: May 2011

Hi Erica,

My husband was diagnosed 2/1/11. He was getting an endoscopy to look for a post surgery complication following a radical prostectomy and his GI doc told us he had a suspicious spot on his esophagus and it was probably cancer (from one cancer to another in less than a month). I had to ask twice if he really said "probably cancer". His tumor was very small 1.3 cm and he was staged T1a, then T1b after a Endcoscopic mucosal resection failed to remove the tumor. No pre-op chemo or radiation, but 5 lymphn nodes tested positive after surgery. He is in the middle of his 3rd round of chemo, one more to go.

He has had a lot of eating issues since surgery and I found that putting protein powder on everything can help boost calories. One of his chemo drugs makes him cold sensitive for about a week or so, but once that starts wearing off a milkshake with only carnation instant breakfast (sugar free), ice cream or chocolate milk and protein powder is at least 400 calories in less than 8 oz. The doctors want him at 2500 calories a day.

I understand just how tired you are. I also work full time and between that, household chores and grocery shopping (and it seems like a daily visit to the pharmacist to pick up yet another prescription), I am constantly (day and night) trying to figure out what else I can make to boost calories. It seems like I am on the internet 24/7 for food inspiration.

You can only do so much. I've learned not to try to do it all. I just can't. The one thing I do though is take 15 - 30 minutes everyday (rain or shine) to play in my flower garden. I wasn't going to do anything this year; I didn't think I would have time, but I realized that gardening is my "me time" (besides driving to and from work, and that's no fun!) and I take that time to enjoy nature (although I am usually still trying to think of high calories recipies :-)). Try to find a few minutes a day for you too.

I will be here to listen anytime! Kim

preacherchad's picture
preacherchad
Posts: 62
Joined: Dec 2010

Erica;

I was dx T2N3M0 Nov. 11, 2010. I went through 5FU, two rounds of Cisplatin and 29 rounds of radiation. Your husband should have about 5-6 rounds of rad left. The last week or two is the worse. I did start to feel immediate relief from the radiation within one week of last treatment. I started to eat much better, and feel much better, even put a couple of pounds on during the 6 weeks between treatmentst and surgery. The pain is unexplainable, the best i can do is that it feels like a severe sunburn in your esophagus. I did use "magic mouthwash" that was perscribed by dr. I swallowed before eating that did give a numb feeling for a few minutes. This may help your husband. (take as needed for me not just before eating)
You have to take it one day at a time, and you will make it. You must take time out for yourself for peace and rest or you aren't any good to anyone. As long as the road may seem, it gets shorter and shorter every minute. Please know that we are praying for you and your husband.

I had Ivor Lewis March 24, 2011 at MUSC. Not pushing one over the other, just feel comfortable with your surgeon and have confidence that you are making the right decision. Prayer will guide you in the right direction.

God Bless you and your family

chad

ladyleisure1
Posts: 11
Joined: Aug 2010

my husband cannot eat or drink, he is only tube fed, he loved food 2 years ago, now nothing, it's so very very hard to see my hubby suffer like this, I cry alot he keeps fighting as I will, he lost over 50lbs, he goes to surgeon every 3 weeks to have his ephougus opened up again it's on his shoulder, so he does not choke sleeps sitting up so he does not choke. I will keep you in my prayers!

TerryV's picture
TerryV
Posts: 915
Joined: Jul 2011

What a difficult journey for you both! I hope there are measures that can be taken to improve the outlook for you & your hubby. Bless you that the spirit to fight continues. That's a GREAT thing!

Please shout out if you need an ear or a shoulder. Positive thoughts to you both!

Terry

ArchTB's picture
ArchTB
Posts: 157
Joined: Dec 2010

Erica,

My suggestion is to always ask doctors about anything that worries you, even if it is the silliest thing ever. Better safe than sorry. However, I also want to let you know that pain, lack of energy and appetite, fatigue, and loss of weight are all very typical towards the end of radiation.

My husband was down to 148 from his normal of 175 and we were struggling to keep his weight. he was not on j-tube because he was able to eat. But he was really sick and could not hold any food. He had zero interest in food. Nothing that he used to go crazy about in the past seem to interest him. We tried calorie-loaded protein shakes, but anything sweet he could not tolerate at all. Throwing up did no good for his calorie intake and only increased his pain. But we tried to figure out what he could eat and hold for some time (crackers and hard cheese were the safest option). In addition he suddenly developed a weird craving or rather minimal interest in the taste of vinegar. So I was making small toasts with cheese/ham and pickles to provoke his appetite. This reminds me of an inappropriate joke about a pregnant lady and weird cravings, which i would not post here :)

Anyway, Tom remained quite sick for about two weeks after the end of his radiation treatment, but was getting a little bit better every day. By the time of his surgery (6 weeks after radiation) he had no nausea and was stable at 152 lbs. After the surgery he felt much better and got his appetite back. Now I need to watch out for him not to overeat!

So hang in there. It's tough, but it will get better. As far as combining work, cleaning, cooking and taking care of your loved ones - I had to go through that too. But you would be glad to know that the after surgery instructions that we received at MSKCC clearly stated the necessity of daily exercise for fast recovery and specifically recommended that patients do minor household activities, such as dusting and vacuuming (good for stretching). So, there you go - something to look forward to!

Olya

katboots's picture
katboots
Posts: 9
Joined: Jul 2011

Erica, I just wanted to share our experience with you fwiw... the surgeon didn't want my dad to have a feeding tube because of worry over some kind of scarring issue, and the radiation oncologist did say Dad might want one, but when Dad said the surgeon said no, the radiation onco didn't explain just how much they might be going to want one. By the time he finished rad/chemo he could no longer swallow any food food; was living on 400 calories or less a day of VHC and Glucerna (like Ensure, for diabetics). He went from 195 to 140 (on Tuesday). By the time he went in for his pre-surgery consultation 10 days ago, they would no longer even *give* him a tube (much less the surgery) because he was too weak from malnutrition to tolerate any intervention like that. Instead, surgery was postponed and he got a nasogastric tube (goes down the nose and throat) five days ago and the ng tube has made a huge difference; he is starting to feel alive again. If my parents had known then what they know now, they would have insisted on a feeding tube solution of some kind when radiation started.

The ng tube is not perfect (in fact, it is trying to come out [on its own] tonight and we had to turn off his food pump, and he is going to have to have it put back down his throat again tomorrow -- and this time, we'll tape that sucker down like crazy to keep it in), but he is so much happier without the added stress of knowing he is starving but being unable to eat. And the whole cooking thing sure gets easier. :-)

One day at a time has sure become the way to go for us, as everyone has said. And pre-ng tube, it was one bite at a time. :-)

sammy123
Posts: 65
Joined: Apr 2011

Hi Erica-

We are in the process exactly where you are now. My advice would be to vigorously ask for a J-Tube. We were strolling along beautifully with the 28 days of radiation and two rounds of chemo done. My husband got severely dehydrated after all was said and done and then we had no choice but to be hospitalyzed for a j-tube. Dehydration is scary, and knowing what I know now, having that J-tube earlier would of prevented many problems. It is like money in the bank.

I would like to ask if anyone does bolus feeds with a J-tube. We need to take a plane ride for further testing for two days. Can I safely do bolus feeds. So many conflicted answers to this with surgeon, dietician, thought I would ask any patients with success of bolus with Jtube. I know that pump is optimum.

Good Luck Erica. Please email me message anytime. It is all so scary isn't it? God Bless.

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