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my esophagial cancer - metastatic to bone

Caballero38's picture
Caballero38
Posts: 37
Joined: Sep 2009

Hi Everyone,

Here is an update on what has been going on with me. During the holidays, I broke my neck, don't ask me how, but the pain was excruciating. I went to the ER with a severe neck & head pain and that's when they discovered it was broken.

I was having trouble with my neck for about 2 months before. I thought it was because of the way I was sleeping, but then the pain started getting worse I asked my doctor to send me to physical therapy. I don't know all the technical terms, but it was broken and they needed to fused my neck bones together. I had surgery on my cervical spine to stabilize my head.

I will have the brace for about eight weeks and I won’t be able to move my head from side to side more than 1/2 an inch from now on.

Okay so here is a question I have for you.

I had Esophageal Cancer and an esophagectomy. I was recovering well from that surgery and it seemed that I was cancer free for a little bit. Two months later, they did a biopsy on my rib because they saw some activity when I had a CT scan, they found it was cancer. I guess this is what is called metastasized to the bones. The treatment is chemo and radiation.

I don't know weather I should do treatment or not. I'm not sure if the treatment will extend my life all that much and if it is worth all the pain and discomfort it brings.

What are your thoughts??? Any thought would help.

Thanks,

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Cab,
Wow! You have been through it for sure! Unbelieveable that you were functioning with a broken neck for so long. I look at cancer this way, if there is treatment available to fight the cancer, go for it. Do not let this nasty beast be the one to win the battle. My dad survived ec. Now it has spread to his liver. Chemo is the option. My dad and I have an agreement, as long as there is treatment available, he is not terminal, he has to keep fighting. He can not give up. When the drs tell us there is nothing more they can do for him, he can give up.

From your picture, you look young. You have a lot of life ahead of you. You might as well have the treatments, and have a good quality of life, than give up and suffer so much more.
You have to go down fighting. There is always that chance of beating it and surviving!

Hope this helps. Keep us posted. Prayers are being sent your way.
Tina

Caballero38's picture
Caballero38
Posts: 37
Joined: Sep 2009

I kinda know the right thing to do is "fight". I'm just wondering when do you know when its time to throw in the towel. My Dr. Said Months with out treatment and he said maybe make it to the year with treatment. It just left me thinking, do I have it in me to fight for a few months?

That is a question that I must search deep and pray for courage from our creator.

For now, I do have the treatment start scheduled for next week and unless, I feel I'm really done with the fight before then, I'm planning on going through with it.

Thanks for your post and prayers, it means a lot to me.

Luis

Caballero38's picture
Caballero38
Posts: 37
Joined: Sep 2009

I totaly forgot I had mentioned my neck brakage in another post. I was reading Williams post and didn't notice I had responded to it. I couldn't figure out how the bone brakage was known. LOL anyways, I think I'm just confusing myself, please excuse my babbeling...

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

and had the spots radiated and went into remission. So I would probably go for the treatment. I will be praying for you!

Betty

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

Have you not read any of my posts about Al. He is actually in the hospital as I am posting this with mets to his lumbar spine. He has a broken spine. Do the darn treatments. We know that so far it is the only place that he has mets and he was going to have some chemo after his surgery any way just as they say catch anything thay still may be floating around.

Go back and read my posts. We are there and are doing it.

Sorry I am being a little harsh. If Al can do it so can you.

God Bless,
Kath

Caballero38's picture
Caballero38
Posts: 37
Joined: Sep 2009

Hi Kath,

Thank you for posting while you and Al are going through this. I wasn't able to post while I was in the hospital.

I have to give you a big THANK YOU for letting me know. I wouldn't have noticed your post because I didn't know what "mets" is/was. But, let me tell you, I did go back and read through some of your post and I can clearly see now that I should not give up. I was just a little afraid from the uncertainty of what is to come.

I will definitely put on the gloves and fight this thing with all I have and with the help from you all here on the CSN family and my family and friends I will be able to do this thing with a high level of support.

I will keep you all posted. I have my first Chemo on the 13th (my lucky number) and Start the radiation soon within a couple of weeks..

Thanks again Kath, I will keep you and Al in my prayers

Luis

K_ann1015's picture
K_ann1015
Posts: 555
Joined: Aug 2009

Hi Luis,

What ever you decide---you know you are not alone... I think you will know if there is a time to "let nature take it's course". But God gave us these great doctors and "Possibilities" ---maybe it won't be as hard as you think. Some chemo is not as hard on the body...
you surely (as well as AL and others on this site) will be in my prayers! Take one day at a time.
Kim

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Luis,
I was really sad when I read your first post about your neck but amazed at what you have been thru and still are on the board and keeping us informed. Please do what you feel is right but I would not give up, if the drs say they have seen remissions thru treatment, give yourself that chance. I have 2 friends with Stage Iv lung cancer and colon cancer respectively, they are being treated as if they have chronic diseases. My friend with the colon cancer has had 3 set backs one including 3 mets to the liver and after treatment her liver is clear, she never gives up and the drs always seem to come up with another option. We are all here for you, hope you have good support at home and you know all of us will keep you in our daily prayers. Please take care and keep us posted.
Donna70

meena1's picture
meena1
Posts: 1005
Joined: Oct 2008

Luis, i have breast cancer. I usually post on the breast cancer board, however, i do read the other boards since i am stage 4 and there are not too many on the breast cancer boards who are stage 4. I just wanted to give you Hope. I was diagnosed in July 2008 with breast cancer with mets to the bones in my spine, T-10 to be exact. i had chemo, a masectomy, rad to my breast. Right now, i am in remission, the mets are stable. I do have a small amount of back pain, but very tolerable. I receive treatment of drug called Zometa every 4 weeks. It is given intravenously through my port. it does have some side effects, but not like chemo. It is supposed to strengthn my bones. So, please do not give up. This is treatable, been 1 1/2 years for me, and i am NED. i wish you luck and i will keep you in my prayers.

jethro-t's picture
jethro-t
Posts: 23
Joined: Dec 2009

I am caregiver for my husband (Hal) who was diagnosed Dec. 1st with EC. It was first thought to be confined to esophagus wall, but further test reveal mets to lymphs, ribs, tailbone, chest wall and muscles throughout. Of course, we were shocked too. He is experiencing great deal of pain in his legs, not sure if this is related, but having more tests.
But he is fighting since we can't have the surgery (stage IV), we are having both radiation and chemo at the same time. Trying to shrink the original site and help him get to eating real food again soon, and then trying to slow down and kill the other spots throughout his body. Drs even talking about hitting some other spots with radiation too.

I hope you find the encouragement here to begin your treatment! We will pray for you too!

Rhonda (jethro-t)

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

Hey Lou,
Glad to see you took Kath's kick to your rear seriously!! Today is the 13th, your lucky # and day of your treatment. Hope it all goes well for you! Keep those boxing gloves on and knock this cancer out in the first round!! Best of luck to you, keep us posted. Praying for you.
Tina

Caballero38's picture
Caballero38
Posts: 37
Joined: Sep 2009

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

Betty in Vegas's picture
Betty in Vegas
Posts: 311
Joined: Jul 2009

What an amazing guy you are...

Betty

Pghmomma
Posts: 161
Joined: Nov 2009

I am SO glad you buckled down and went to fight this BEAST instead of just giving up! You are a very strong person, keep your head up high and we will be thinking of you!

mumphy's picture
mumphy
Posts: 486
Joined: Jun 2009

I'm just wondereing how much did you weight right now, after your surgery what was your lowest weight. I'm not sure if they will start Al's chemo because he only weight about I'm guessing 145#. He won't let me weigh him because he doesn't want to be discouraged.

Thanks,
God Bless,
Kath

Pghmomma
Posts: 161
Joined: Nov 2009

I noticed you said you think Al is only at 145. My dad started this at 161. He is not 150. Was at 147.5 four days ago but gained some weight. Im sure that they run chemo based on body weight. But I know that DR. Gibson will not do anything risky. and if he feels hes not strong enough he will not start him. Just like he said too my dad.

Donna70's picture
Donna70
Posts: 920
Joined: Aug 2009

Hi Kath,
I am supposed to start chemo with the taxotere in a couple of weeks and I weigh 124 lbs on a good day. I am getting j tube feedings at night and eating 6 times a day. The dr gave me 8 wks to recover from the surgery before I start the chemo but did not know there was a precaution about weight for chemo??? they did make me do tube ng feedings before surgery because I weighed too little 121 and they said I would not heal. I hope the drs make the right decision for Al so he gets thru the chemo smoothly. Getting scared of mine after I found out your fingernails can fall off and you might get transfusions but glad I am around to try to beat it out of me forever, hopefully and that is what I hope for all of us here. take care,
Donna70

Caballero38's picture
Caballero38
Posts: 37
Joined: Sep 2009

I Have maintained myself at around 140. I weighed 135 the last time I went to the doctor. and they did start chemo for me. I hope the Doctors choose what's best for your husband.

Keeping you in prayer,

Luis

MAE66
Posts: 70
Joined: Nov 2009

I am cheering you on, and hope that the rest of your treatments go as well as the first.

Susan

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

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
Posts: 267
Joined: Nov 2009

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

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

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

Tina Blondek's picture
Tina Blondek
Posts: 1560
Joined: Nov 2009

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

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