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new husband's diagnosis

lindadanis
Posts: 267
Joined: Nov 2009

My husband, age 55, was recently diagnosed with stage four esophageal cancer, we went to three oncologists and they all had the same opinion. They suggested chemo, not radiation, since it was not curable because it had spread to the liver, abdomen, lymph nodes, etc. He is starting chemo this week, cisplatin and cpt11. Has anyone been on this combination of chemo drugs and what can I expect. I am so nervous about the chemo, have never been around anyone with cancer, and do not know what to expect. He has already lost 50 pounds in two months, has a very hard time swollowing, some I think is physcial and some psych. The doctor put him on paxill two weeks ago and doubled the dose today to 20 mg daily. He did not want to do the chemo however, the doctors says without it, he would only live for about three months. Can you please explain how chemo works and what will he be like afterwards.

JaneE2366's picture
JaneE2366
Posts: 332
Joined: Jul 2009

Lindadanis,
Hello, my husband is going through something very similiar. He was dx in March 2009 with stage iv EC. Mets to lumph nodes, liver, lung, and peritoneal cavity. Radiation and surgery not an option. My husband, Charlie, never had any symptoms. He had pain in his side which he thought was diverticulitis.....it was the fluid in his belly that was causing all the pain. We have been told the best we can hope for is remission. If we decided to do nothing, they gave him 2 - 3 months. So we opted for chemo. They threw the kitchen sink at him. He went into the hospital for his chemo. He had a port put in his chest and had his first round of chemo in April. Each round was 120 continuous hours. He had Taxotere, Cisplatin, and 5-FU. The first round was the worse. Charlie said he felt like he was hit by a truck. They load you up with anti-nausea meds and steroids which do help....but he was still nauseous. It was difficult to get him to eat much of anything after the first day or 2. Towards the end of the cycle he had diarrhea and terrible mouth sores and ended up with thrush. He was in pretty bad shape when he got home. Basically slept and took meds. 3 weeks later he went back in the hospital for the 2nd round. By about day 3 of that round, he started with diarrhea and the dr stopped the treatment. He said it was too early in the cycle to start with that. So Charlie wasn't as bad when he got home from that round. We had another PET scan after that round (in May) and thank GOD he was already in remission. Dr had originally wanted to do 6 rounds but backed it down to 4 after seeing what good results he had. 3 weeks later we were back in the hospital for the 3rd round. Dr lowered the dose just a bit and Charlie was able to complete that round. We decided to delay the 4th round a couple of weeks so we could travel up north (we retired to FL in 2007 from NJ) to visit friends and family. It was good to get away but Charlie did sleep most of the time. In Aug we had our 4th round of chemo.
Dr suggested we go on an oral chemo (Xeloda) to try to keep the cancer in remission. So we started that in Aug. You are on that for 2 weeks and off 1 week. Dr has played around with the dose of Xeloda too. Kept increasing the dose until Charlie had some side effects....not enough to compomise his quality of life.....but enough to know it is working. We just finished his 6th cycle of that.
We had another PET in Sept and things are the same as they were in May. God is good!
In Sept the dr told us about a drug called Herceptin. It is used to prevent a reoccurance of breast (& other) cancer.....and has shown promise in increasing survivability in gastric cancers. So the dr had Charlie's tumor tested (it must be HER-2 positive) and his tumor is the right kind. So we started on that treatment. He goes every 3 weeks and it takes about 90 minutes for it to be infused. Not easy getting insurance to cover it.....we are actually trying to get the drug company's foundation to cover the cost. He has had 2 Herceptin treatments so far.
Charlie also lost 50 lbs......not because he couldn't swallow..that was never a problem.....he just eats next to nothing when he was in the hospital getting his chemo. Luckily he could afford to lose it.
I asked the dr to put him on an anti-depressant as soon as he was diagnosed. He put him on Paxil too. We just increased the dose on that. He also takes Ativan which is an anti-anxiety. He was taking that 3x a day but he was sleeping an awful lot so we backed it down to 2x a day and that is when we increased the Paxil.
I am not sure if I answered all your questions......sounds like you have a fight on your hands......but please, do fight. It is now 8 months since Charlie was diagnosed and he is doing OK. Tired from the oral chemo he takes. We will have another PET in Dec so we are very anxious about that. We are scared to death the cancer will come back sooner rather than later......so we try to live in the moment....take it one step at a time. That is all you can do.
I will pray for you and your husband. Try to stay strong......believe me, I know how difficult this is.
Jane

MAE66
Posts: 70
Joined: Nov 2009

My husband is also stage IV. He just recently completed six rounds of Taxotere, Cisplatin and 5FU and 5 weeks of radiation. I was also VERY nervous about the start of chemo and not sure what expect. Everyone is different, but for us it was somewhat anticlimactic. The first round was given in the hospital and we kept waiting for it to “hit”, but it went pretty smoothly. The main problem was mouth sores, which they have things for. Each successive round got harder and Paul ended up being admitted a couple of times for side effects, mainly low blood counts accompanied by fever. He was able to work from home, so he was able to rest when needed. Paul lost around 40 lbs.prior to diagnosis, he had a hard time swallowing. He had a stint put in and started taking an appetite enhancer and has put on about 20lbs., despite the mouth sores. He is now bouncing back physically and emotionally and getting back to activities.

The old line “So, Mrs. Lincoln, other than that, how was the play?” sums it up. If it weren’t for the cancer the rest of it would not be bad. The Drs. and nurses have been patient and kind. The treatment gave us hope when we saw a positive response. We have found support in unexpected places. I had not been around a lot of cancer either, that has changed, and not all of it has been bad.

I hope this helps.

Susan

emg09
Posts: 252
Joined: Mar 2009

Hi,

Did your husband have any problems with his stent, like any side effects? My dad is hiccuping all the time and has little to know appetite. I've already talked to Mumphy about it and her husband did have the hiccups too, so I was wondering if you experienced the same thing?

Thanks!!
Erika

oriontj
Posts: 390
Joined: Jul 2009

My husband finished October 9th...6 weeks of radiation and 6 chemo treatments..he was on 3 different drugs, Taxol, cliplatin and the experimental drug Erbutux in a clinical trial..he didn't have swallowing problems to begin with...but the last three weeks were difficult..he ate slowly, nothing tasted like it should and the last week and two weeks after it was very tough...but that improved, he's eating well...not falling asleep in his recliner..he gained his weight back...the endoscope ultra sound showed nothing in the esophagus at all...Pet scan he had yesterday will tell more..Now he's well enough to go play Cribbage in the morning with his buddies...hit the casino boats...he was a big help with the Christmas decorations and we're going to Las Vegas on Sunday...Expect him to be tired after awhile..mine was never nausous...they have super drugs for that..

I was literally paralized when I heard what he had..I just had a knee revision Jan 15 and my Mother passed a month later and then we were hit with this diagnosis..

I learned to live in the NOW..present...so not to lose today.

It's frightening and I will add you and your husband to my prayers...hang in there.

Tina Blondek's picture
Tina Blondek
Posts: 1561
Joined: Nov 2009

Dearest Linda, First of all....you are not alone here, as you can see by the many positive responses you have received. I am a caregiver for my dad, Ray, 70, diagnosed with EC stage IV, November 2008. Fortunately, his has not spread to any other places. He did receive 6 weeks of radiation and had oral chemo. Luckily, the only side effect he had was mostly being so tired. He did get mouth sores and thrush one time. It is now a year later, he is in remission, and getting ready to have a balloon dialation done to open up his esophagus more, due to scar tissue. Everyone reacts to chemo in different ways, so it is hard to say how Jim will. There are also meds available to help with the nausea.

The hardest thing to do is to stay positive. You must do this though. Always be there for him, read up on all the information that is available via the internet, live in the moment, cherish each day, and take it one day at a time. Please keep us updated. We will be here for both of you. You are both in my prayers.

Sincerely
Tina

lindadanis
Posts: 267
Joined: Nov 2009

first, I want to thank all of you that have responded to my post. I appreciate everyone of them. We start chemo tomorrow and honestly, I am still very much anxious about the whole ordeal. I never thought that I would be walking in a chemo infusion room with any member of my family. It is weighing very heavy on my mind these days. We go to chemo training today, I am hoping that this will help us all out alot, answer out questions, etc. I look at each and everyday different now, I do not look at life like I did before as I am sure none of you do. I hope and pray that this chemo will make a difference in his life and help him get back to eating better and enjoy the time that he has with us. Everyday is precious!!!!!
Thanks to all of you again and I will keep posting on this site. I am so glad that I have found it.

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