my esophagial cancer - metastatic to bone

Caballero38 said:

Update
Hi All,

Thanks for your post. Everyone of your words helps me feel that I am not alone in this fight. It is different to talk to someone going through similiar sittuations than my family and friends beause you know exactly what we are going through.

Especially with the very important choises we must make in order to try to maintain ourselves in this wonderful world and spend a few more moments with our family and friends.

I had my first treatment of chemo for this round, cuz I did have chemo before my esophagectomy. It only has been a couple of days since the chemo, I don't feel any different. I am actually feeling a lot more hungry than normal. Today a little more pain than normal, but all in all I feel fine.

Thanks again for taking the time to send me your messages of insperation and support.

Many thanks,

Luis

happy you went for the treatment
Luis,
I am so happy to see you went for the treatment....it is a no brainer. One thing I tell my husband....try it....you can always stop it. When Charlie was dx last March with stage iv, we were told if he decided on no treatment, it would be a matter of a few months. Surgery and radiation are not options for him. He decided to do the chemo...I can't lie...it wasn't fun....but here we are...approaching 10 months since he was diagnosed and he is really doing well. We went through the same thing when they suggested oral chemo (xeloda) to try to keep this beast in remission. He decided to try it and it is going OK. Just doesn't have anywhere near the energy he used to have...but that is OK. He was finally able to get out on his motorcycle yesterday...first time since he was dx and I was so happy to see him come home with a smile on his face. So was the treatment worth it....absolutely. I pray for you to continue to feel "fine." Stay positive and stay strong.
Jane

lindadanis said:

Jane
Hi, I was reading about your husband diagnosis and it is very similiar to my husband, he was diagnosed last october with stage four with the same mets your husband had, is currently doing chemo, starting his third session this week, no radiation no surgery, doctors says he has too much cancer for them. Can you tell me your husband's complete story from the beginning. I am new to this site but when reading some of your stuff, it reminded me so much of my husband. I am very very depressed and he is more depressed than me, I need to figure out what to do if the chemo isn't working, I am hoping they will do a scan soon. You can email me at dianad1215@aol.com if you prefer. I live in Mass., where do you live. thanks so much Linda

Linda
Linda,
Charlie was dx in March 2009 with stage iv EC. Mets to lumph nodes, liver, lung, and peritoneal cavity. Radiation and surgery not an option. He 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 loaded him up with anti-nausea meds and steroids which did 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. They reduced the dose for round 2. 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. He starts his 8th round of Xeloda this coming Monday.
We had another PET in Sept and things where 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) cancers.....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. Our dr finally was able to get the drug company's foundation to cover it....they actually reimburse the dr for the drug. Next Thursday Charlie will have his 5th treatment.
Charlie initially lost 50 lbs......not because he couldn't swallow..that was never a problem.....he just ate next to nothing when he was in the hospital getting his chemo. Luckily he could afford to lose it. He has since put some of the weight back on. For the first time in my life I was happy he was over weight!
I asked the dr to put him on an anti-depressant as soon as he was diagnosed. He put him on Paxil. We increased the dose on that as time went on. He too was so depressed. 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.
Now that he has been stable for awhile, his outlook is a bit better. I keep telling him he must have a positive attitude. It is so important. I try to get him to concentrate on the positive. We didn't think we would see this Christmas together and here it is mid January and things are OK. We also go to a support group at our Cancer Center and I think that has helped him. It wasn't easy getting him to go, but now he doesn't want to miss the meeting. I hear a lot of caregivers are also on anti-depressants. I haven't had to go that route....yet. But if things turn for the worse, I would have no problem asking my dr for something. I may need it to be a better caregiver to Charlie.
Monday, the 18th, we got for another PET scan. Guess we are on a 4month schedule. We are praying it will be OK. We will get the results on Thursday. Everytime the thought of "what if the scan is bad" comes to mind, I just push it away and try to think positive. 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 we can do....it is in God's hands.
As I mentioned we live in FL. Being treated at a hospital that is affiliated with Moffitt Cancer Center.

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 almost 10 months since Charlie was diagnosed and he is doing OK. Tired from the oral chemo he takes...but that is OK...we can deal with being tired.
I will pray for you and your husband. Try to stay strong......believe me, I know how difficult this is. If you would like to email me, my email is jevans2366@comcast.net.
Stay strong,
Jane

Caballero38 said:

Update
Hi All,

Thanks for your post. Everyone of your words helps me feel that I am not alone in this fight. It is different to talk to someone going through similiar sittuations than my family and friends beause you know exactly what we are going through.

Especially with the very important choises we must make in order to try to maintain ourselves in this wonderful world and spend a few more moments with our family and friends.

I had my first treatment of chemo for this round, cuz I did have chemo before my esophagectomy. It only has been a couple of days since the chemo, I don't feel any different. I am actually feeling a lot more hungry than normal. Today a little more pain than normal, but all in all I feel fine.

Thanks again for taking the time to send me your messages of insperation and support.

Many thanks,

Luis

Hip hip Hooray for you!!
Hey Luis,
Congratulations friend! Glad the first chemo treatment went well for you. Glad you did not have any side effects as of yet. Good job. Keep up the good work, and keep us posted! You know we will be checking up on you!!
Tina