my husband has EC
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mmr19
Member Posts: 75
I've always been too shy to participate in a message board. But this one I must join in. I found CSN yesterday while once again researching EC. I can read article upon article and it's all starting to repeat what I've already read.
Then I came to CSN and started reading.You all seem like such caring and knowledgeable people and that's just what I need right now. Just to see that there are people who know exactly what I am going through. I only wish I found you sooner.
My husband Lou was diagnosed as Stage IV on Dec 13,2009. What a roller coaster since.
He started having swallowing problems the end of October. Since he has never been one to see a doctor, he tried OTC Nexium, etc. After a couple of weeks with no results, he finally agreed to see a doctor. Dr suspected GERD and gave him a prescription to try. When there were no results a week later, Dr ordered a barium swallow. A couple hours after the swallow (Dec 10), the Dr called and said there was a mass and he needed to go to the hospital for further testing.
After many tests, we were told Lou had EC. A huge mass at the junction. The final CT-scan (Dec 15) showed that also his adrenal gland is 'affected' and he has a 1/2" diameter nodule on his lung. Dr said they could do a biopsy on those, but right now he's going to see how they react to the chemo. His main concern is the mass in Lou's esophagus. The goal is to shrink it and send it into remission.
Lou had Cisplatin and Fluorouracil for the first 5 days when he started radiation. Had 15 rounds. Even though he had some side effects, he got through all that pretty good. Has had alot of chest pain (heartburn?) all along. But he is swallowing better.
A week after radiation ended Lou got his first treatment of Taxotere and Carboplatin. He is to have it every three weeks for possibly up to 6 times. Dr said he would have a CT-scan done after 3 times to see if there are any results. That will determine how many times.
And that's were we are right now. He just had his 3rd treatment. His appt for scan is March 8. We're nervous.
He's been so sick from the chemo. He was hospitalized after both treatments already and hope it doesn't happen again this time. He had chemo last Wednesday. He hasn't been feeling too good today. He has alot of pain in his legs. This also happened last time. The pain was intense in his legs for a couple days. Then moved up to his chest. Then a fever which sent us to the hospital.
The dose of his pain pills was increased and seemed to help, but not real long with these leg pains he's having. I have read that the leg pains are a side effect of the Neulasta shot he had.
Oh my goodness....I know I said I was shy, but I guess once I start going....it won't stop. I just want to say where we're at.
It has been quite a scary time. I feel like I have so many questions...but don't know what to ask.
Thanks for listening-
Marta
Then I came to CSN and started reading.You all seem like such caring and knowledgeable people and that's just what I need right now. Just to see that there are people who know exactly what I am going through. I only wish I found you sooner.
My husband Lou was diagnosed as Stage IV on Dec 13,2009. What a roller coaster since.
He started having swallowing problems the end of October. Since he has never been one to see a doctor, he tried OTC Nexium, etc. After a couple of weeks with no results, he finally agreed to see a doctor. Dr suspected GERD and gave him a prescription to try. When there were no results a week later, Dr ordered a barium swallow. A couple hours after the swallow (Dec 10), the Dr called and said there was a mass and he needed to go to the hospital for further testing.
After many tests, we were told Lou had EC. A huge mass at the junction. The final CT-scan (Dec 15) showed that also his adrenal gland is 'affected' and he has a 1/2" diameter nodule on his lung. Dr said they could do a biopsy on those, but right now he's going to see how they react to the chemo. His main concern is the mass in Lou's esophagus. The goal is to shrink it and send it into remission.
Lou had Cisplatin and Fluorouracil for the first 5 days when he started radiation. Had 15 rounds. Even though he had some side effects, he got through all that pretty good. Has had alot of chest pain (heartburn?) all along. But he is swallowing better.
A week after radiation ended Lou got his first treatment of Taxotere and Carboplatin. He is to have it every three weeks for possibly up to 6 times. Dr said he would have a CT-scan done after 3 times to see if there are any results. That will determine how many times.
And that's were we are right now. He just had his 3rd treatment. His appt for scan is March 8. We're nervous.
He's been so sick from the chemo. He was hospitalized after both treatments already and hope it doesn't happen again this time. He had chemo last Wednesday. He hasn't been feeling too good today. He has alot of pain in his legs. This also happened last time. The pain was intense in his legs for a couple days. Then moved up to his chest. Then a fever which sent us to the hospital.
The dose of his pain pills was increased and seemed to help, but not real long with these leg pains he's having. I have read that the leg pains are a side effect of the Neulasta shot he had.
Oh my goodness....I know I said I was shy, but I guess once I start going....it won't stop. I just want to say where we're at.
It has been quite a scary time. I feel like I have so many questions...but don't know what to ask.
Thanks for listening-
Marta
0
Comments
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Hi Marta! Wow...it sounds
Hi Marta! Wow...it sounds like you have been going through it! So sorry to hear that this cancer has invaded your family, too. My husband, Lyle, also has EC. We found about about it on January 28th and just found out last week that it is stage 3. He doesn't start his treatments until March 10th so I have no words of wisdom for you but there are soooo many people on here that do. I know they have helped me soooo much when I have asked. Lyle and I definitely believe in the power of prayer and we will add you and Lou to our list. Take care...and there is no reason to be shy here...you will be cared for right away!
Susie0 -
WELCOME ABOARD
Hi Marta,
First off you cant be shy on this board, we all tell it like it is, we vent laugh, cry hug and wear BIG GIRL PANTIES on this site. I too was in your place this time last year, you see my husband was like yours he started having problems but being as healthy as he was he finally gave in and went to the doctor of course they thought his was his gallbladder until we did a scope on APRIL FOOLS DAY yes you got it right that was not a good joke for us on that day, we have had bumps, turns, hurdles, jumps, and anything else that happens while fighting this ugly disease we call EC, My jeff was diagnosed as stage 2 and went through 3 rounds of chemo, we had mouth sores, grouchy ness, hateful and chemo brain, for several months, i always thought what next. He had surgery on July 23, of last year with the iVOR Lewis kind it was a very rocky road and we had a long hurdle to cross but now we are coming up on 1 year since diagnosed and so far there is no evidence of disease. I want you to know we have lost a few on here, only because they couldn't fight no more and the disease turned ugly, we have some still fighting, and we have some with stage IV and will never be able to have surgery, but we all hang in together to help each other.
Your husband pain in his legs is probably neuropathy that comes along with this type of problems, You didn't say what stage your husband is, so I am going to assume its further advanced, nor did you tell us what his age is.
There is alot of oldies on here, but I at one time was a newbie, I was scared i thought oh geez how am I going to do this, but without this site I wouldn't be able to answer you like I am now. You learn so much while going through this journey, that when you finish this journey you wonder how you ever did it. You see there is this special man on this site his name is "BILL MARSHALL" and he gives us excellent advice, he is a man you will cheerish forever, if it wouldn't of been for him i wouldn't be able to do this. I had to pull up my BIG GIRL PANTIES alot and move forward, but I did it and am so glad I did.
You will see that you will come on this site often to see what is happening even though I don't answer every single person on thier post doesn't mean I don't read thier information.
We are family here on CSN site, and when someone looses someone we hurt just like they do, you will see the more you come the more you can talk because we all are suffering with this same disease we call cancer, its and ugly beast that likes to keep things stirred up.
Please know we are here for you and please feel free to talk about anything, from your husbands therapy, chemo, hatefulness, food not going down, we have heard it all.
Just pull up your BIG GIRL PANTIES, and say okay if these people can do this I can too, being a caregiver is the hardest part of the job, one because you are overprotective and 2 you have to be the one to take all the riff and make sure it gets done.
If I can help please let me know i am here for you
Love and hugs
Lori aka MOE0 -
Welcome Marta and Lou!unknown said:This comment has been removed by the Moderator
Welcome to our CSN family. Sorry you had to join us here under your circumstances, but glad that we can meet and become lifelong friends here! I am a caregiver for my dad, Ray, 71 dx in 11/08 with ec. He had 6 wks of chemo and radiation. Did very well and beat it. Fast forward to Dec 09. He had severe pain in his right side, and is jaundice. Also had a week long bout with constipation. Have ultra sound done to show he had a blocked bile duct in his liver, as well as lesions to his liver. Spent 8 days in hospital, was dehydrated, and anemic. Had stent put in blocked bile duct, had stent put in esophagus. Home to recover from all of this. He is very weak, and tired. Never really does recover totally from this, starts oral chemo, Xeloda for the liver cancer. Still remains very weak and tired. After 2 wks of chemo he is nausea, swollen ankles, weak, beyond tired. Decides he is done. Wants to give it all up. Talk to dr, he says it is his choice to stop. Dad has a day to think about this. Next day he decides he has made it this far, he must continue. That is where we are now. He has 3 more days of chemo, than a 2 wk break, than back to dr for pet scan.
Now do you feel like you are not the only one on this roller coaster? I thought so! You have to remain positive. Have a strong faith. Pray without ceasing, have a strong support group, that would include us! Come to this site daily. Here you can learn, cry, laugh, rejoice, and vent all in the same place! God bless you and Lou. Prayers will be being said for you both daily. Stay in touch.
Tina0 -
Hi and welcome
Hi Marta,
My name is Ellie and my husband Jim was dx with Stage 4 last September. He has mets to the lymph nodes and liver. He had 4 rounds of epirubicin, oxalyplatin, and xeloda. He now is on cisplatin and cpt 11. Yes, this is a roller coaster ride!! One day we're up and positive and the next we're feeling down. Hang in there and know we on this site are all praying for you and your husband. Make sure the dr. is giving him plenty of fluids and don't be shy to ask questions and demand answers. Every time we go to the dr. I have another printout with me and ask about another treatment. I have found many answers from the caring people on this site.
Ellie0 -
Thank you
Thank you all for your kind words and support. And all the great information! It will certainly keep me busy!
Lou just turned 59 in January. His cancer is advanced stage 4 and inoperable. He has a power port, but not a feeding tube. He's trying to stay away from it as long as he can.
I found on the internet a complete nutritional drink called Nestle VHC (very high calorie). It has 560 calories and 23 gr protein. As long as he drinks 3-4 of those/day with the little (sometimes if any) bit of food, he maintains his weight. Unfortunately it's only sold online.
Well again. thanks for the warm welcome and knowledge!
Marta0
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