New member with a question

Daisylin

This is my first time posting on this site. I spent much of the day reading all the posts, and I feel very moved by everyone’s encouraging words and support of each other.

In January my wonderful husband Lee, who is 48, was diagnosed with stage 4 esophageal cancer, with mets to the Liver. After several months of what we thought was heartburn or acid reflux, he finally went to the doctor. We were sent for a fluoroscopy, which indicated abnormal esophagus, and sent for further testing. Finally we were told the cold hard truth, and went home devastated. We began endless research, which was not very encouraging.

On February 25th, Lee started Chemotherapy, and we are now just finishing the fourth round and waiting for a CT scan to see where the cancer stands. We don’t really know what to expect, he was told at the beginning of all this that he’s not a surgical candidate, and also not a radiation candidate.

My question is……. (and of course I realize that every case is completely different) What usually happens at this point? Do they re-evaluate for surgery? Continue chemo? Start radiation? Find that a miracle has occurred and we are done with this nightmare? We have not really been given any further information and have no idea what to expect.

We have been optimistic, he is able to eat everything, and has not lost any weight, swallowing has been so much better than before the chemo began. The only negatives seem to be direct results of chemotherapy, nausea, dry burning feet, fatigue, dry mouth and constipation. There seems to be so many of you out there that can’t swallow, and I feel so lucky that Lee is not one of them.

I have been reading many of the topics on this page, and there always seems to be more questions than answers. I feel for each and every one of you who is posting here, looking for hope, comfort and answers. This has been the most horrible experience, so many chemo side effects and mental anguish. I thank all of you for your experience and wisdom.

sangora

Daisylin
In answer to your question of where do you all go from here, its hard to define. I have been at this 13 months and am at the moment doing very well, but the plan has been altered after each step. Or at least thats how I feel. I complerted 4 rounds of a three drug cocktail of chemo, then radiation and Xeloda then back on the cocktail for two rounds and then an unfortunate lenghty stay in the hospital due to a reaction to one of the drugs so if this happens don't panic not unusual. I point this out because when it happened to me, my family went insane. At the end of this ordeal my tumor was gone and the spots in my liver and lungs had also been resolved. I was given a ten week drug holiday and restarted on Xeloda in January. I now cycle on and off the drug every 7 days. Tell your husband to be sure he keeps a good lotion on his feet. Once they break out, its hard to get them healed. Been there done that. I use a product called Palmers and it healed me up and I have had no furhter trouble. I said to those close to me that this is a journey and we can all take it together. It is very important that both you and your husband strive to keep a positive attitude, take one day at the time and embrace every opportunity you have to enjoy the moment. There is no cure as you know, but there can be a lot of life in the immediate future. Sam

fredswilma

Hi Daisylin
Your husband's
Hi Daisylin
Your husband's diagnosis sounds so much like my husbands, he is of a similar age as well, how I wish the world knew that acid reflux is not just uncomfortable but can be a precursor to this horrible disease. With regards to what to expect, as you know we are all different, my husband also was told no surgery and no radiation, however we are now re-evaluating the radiation to see whether or not that will be an option now. I think with this you spend alot of time waiting, my suggestion to you is not to waste that time find out as much as you can with regards to his cancer, even though now you say he is able to eat, which is a real blessing make sure you feed him up, protein shakes, ice-cream etc, he will need the nutrition as time goes on.
With regards to a miracle, we all hope, but there does come a time when you have to accept that this disease has no cure, it doesn't mean you have no hope just the hope changes to hoping for as long as possible with the best quality as possible and I know how much heartache that that acceptance brings especially when you are talking about your husband, your best friend the father of your children.
This is a wonderful site and you will meet many people who have walked in your shoes or who are now walking in your shoes, when your heart is breaking there will be someone here who will listen, when your angry nobody here will mind. One last thing take a notebook with you put all your questions in no matter how silly they might be and write down all the doctors answers, for some reason our brains turn to mush when we need them the most.
Thinking of you
Ann

Unknown

This comment has been removed by the Moderator

Daisylin

unknown said:

This comment has been removed by the Moderator

Thank you
Thanks for your kind words and advice. We are still waiting for CT and results.... so for now we are praying for the best, and bracing ourselves for the worst. I feel very positive and optimistic right now, he's eating SO well, and so much.... (he's even GAINED weight during the 4 rounds of chemo) I know things can change on a daily basis, but for now, things are looking up. Stage iv is a horrible place to be. There is so much uncertainty and so very many questions that have no answers.

The main complaint he has right now is constant drippy eyes and tender feet. He is using Lubriderm on his feet, which seems to help.... but the eyes are driving him crazy. They are getting raw and irritated from the constant leaking. Any advice? Take care, all of you!

Callaloo

What now?
First, it is unlikely they will re-evaluate for surgery -- once a stage IV, always a stage IV, unfortunately. The good thing is that your husband is eating, so the chemo must have shrunk the tumor. My primary tumor seems to have disappeared with chemo and radiation, and is now the least of my concerns.

It's also unlikely chemo will be continued for the time being, especially if he's been on a multiple agent regimen. The body can only take so much. If more chemo is indicated, it probably won't be started right away. For example, I was told 5FU can't be given again for 6 months, if at all. A chemo holiday is a good thing.

Whether there's radiation, depends on why they didn't do it to begin with. But, if the primary tumor is gone, then there might not be any need for radiation.

What happens now is that as your husband recovers from the effects of chemo, you and he will resume your life -- take that vacation you'd been planning, go back to work, whatever gave you joy and fulfillment before your life was so rudely interrupted, try to get it back.

Try not to waste time always thinking about the next scan. And there will be one every 3 months or less. The scans will not give you all the answers. I've had 5 scans in the past year and it's always come down to a "glass half full". No matter how good the scan looks, your doctor will not be able to say he's cured, no full glass. But don't get sucked into that 'half empty' negative hole. You won't find any help down there.

When you're stage IV, it's not all about the scan results, it's about how I am feeling right now and what it's going to take to keep me feeling well and strong for as long as possible, and able to do the things I want. Your husband is eating well, and getting over the effects of chemo. The two of you should be looking forward to enjoying a nice long summer together, and more.

I wish you the best,
Lu

Callaloo

a word about drippy eyes
I had drippy eyes, but the worst was drippy nose. I think I dripped so much that's what caused the constant dehydration!

Anyway, what helped was a nasal rinse (not the spray - but a saline nasal irrigation) 2 to 3 times a day. NeilMed or Ayr -- both come with an 8 oz squeeze bottle. It helped with the drippy nose and the eyes stopped tearing up too.

I use udder cream on my feet as well as Lubriderm. And also started wearing those shea-butter-infused socks you get at Bath and Body Works. I don't think they come in men's sizes, but just thought I'd mention it. Maybe you can get creative ;-)

Lu