Newbie

jmstls · August 2009

Hi, I've been a lurker for a while and decided to join the group. I'm a caregiver to my husband Tom, who was diagnosed with Esophageal Cancer in May, 2009 and it was staged at T3,N1,M0 at Moffitt Cancer in Tampa, FL. Being that Moffitt is an hour away we decided to do the chemo/radiation locally. The oncologist we were referred to suggested a clinical trial to Tom and he decided to go for it. In addition to the carboplatin, paclitaxel and 5FU, the trial added Avastin and Tarceva to the mix along with daily radiation. The carbo, paclitaxel along with the Avastin was administered intravenously in a port in his chest twice, 3 weeks apart for around 7 hours. The 5FU was the pump/fanny pack version and the Tarceva was in pill form once a day. Tom ended up in the hospital for two nights with an infection from low WBC and after the second dose of chemo, he had to stop the pill, radiation and 5FU because of severe mouth sores, for a week. They discontinued the 5FU after that but he did the pill and radiation for an additional 7 days. He had trouble with the radiation for the last 5 doses and for the two weeks once the radiation was finished. He got sick several times and had quite a bit of pain in his boo-boo area (his term). Tom is 60 and like a lot of people was very healthy prior to his diagnosis. He does have diabetes but it was well under control and had recently lost 30 pounds voluntarily. (wish he had them back now). He had lots of trouble trying to eat once his radiation side effects started. When this process started he was 208 and is now down to 175. They didn't put a feeding tube in because his problems didn't really start until the radiation was over. They also told him the radiation would continue working for two weeks after it was finished and he could be in pain for that long. The oncologist keeps telling him he is doing very good but I'm not sure Tom agrees with him at this point.

Next week starts the restaging process and as you can all imagine we're really, really stressed. After all he's been through I sure hope all of these drugs have done something to shrink his tumor. He goes for CT Scan and PET scan on Monday and a scope on Friday morning at Moffitt.

I've been reading about a lot of you over the last couple of weeks. Congrats to both Moe and Abe on their cancer free spouses. I've been praying for both Kitten and Donna and I'm sorry I can't remember other names at the moment.

I would like to take this opporunity to say "Thanks" to William Marshall, your postings have been a big support to me during this time. I would especially like to thank you for talking about an assistant to Dr. Luketich during your operation and the fact that he had gone to Moffitt Cancer Center. We have an appointment with Dr. Alvelo-Rivera on the Wednesday after Labor Day. We're not sure if Tom can have the MIE procedure but even if he can't Dr. Alvelo-Rivera can perform the surgery and we are looking forward to meeting him.

Sorry this is so long and thanks for listening. I've been having trouble posting so I hope it goes through.

Joyce

kitten0385 · August 2009

Nice to "meet" you!
Joyce,

While I am sorry for the circumstances for you finding this site, I am very glad that you did. This is a wonderful site, full of wonderful people. When I was diagnosed back in October, I was also staged at a 3, but was not staged until after surgery as the scans did not show how large the tumor actually was....if they would have known I would have had pre-op chemo and radiation. The path I was put on, I had surgery, and then follow up chemo and radiation. My chemo consisted of Epribucin, Oxiliplatin, and Xeloda. My scans in May were clear, here just two weeks ago, not so much, the cancer's back- there are tumor cells floating around in a bunch of extra fluid in my abdominal cavity. So far there are no tumors formed though. I started chemo again last Friday, taxotere and irinotecan. It sounds like you have some great doctors you're working with, and I wish you the very best!! Welcome to the site!

Cathy

Donna70 · August 2009

Newbie
Hi Joyce,
I thank you for your prayers and I will of course be praying for you and Jim and everyone on this board. I am staged the same as your husband but I see from his treatment plan even if you are staged the same your treatment may be different. Of course, I have squamous and most of the people here are adenocarcinoma. I hope that Jim will be found tumor free and restaged lower next week. It is so hard with all the stress and worry, sometimes I think we are floating along on the prayers of our friends and family to get us thru. It sounds like you and Jim have been enduring quite a ride on this as Cathy calls it the "bumpy road". I am glad you are a lurker no longer, this board is wonderful to air your concerns and get some really good advice from those who have had the hardwon experience fighting this particular enemy. Good luck!! take care,
Donna70

mumphy · August 2009

Hi
Hi Joyce,

I'm Kathy(mumphy) & Al is my husband he is stage IV it sounds like Tom and Al were diagnosed about the same time and have been through alot the same treatments and side effects.

We live just outside of Pittsburgh & Dr. Luketich is Al's surgeon and you are in good hands also. It's funny how small the world is with the world wide web.

I also started on the site reading Williams posts and am glad to have him here. This is a wonderful site, I have been met alot of wonderful and caring people here. The one thing that I have learned is you never have to say I'm sorry here! We all know what each other is going through, someone is always here to listen even to the little things.

It sounds like you have a big week next week. Please keep us posted on Tom's progress.

Nice to meet you,
May God Bless and Keep you

Kathy

JaneE2366 · August 2009

Hello Joyce
Welcome Joyce,
I consider myself a newbie as well.....my husband Charlie was diagnosed in March, 5 months ago....although I feel like it was just yesterday. I found this site a few months later. Charlie has EC, stage IV....not operable...mets to lung, liver, lymph nodes, and peritoneal cavity. Has had 4 rounds of chemo...5-FU, taxotere, and cisplatin. He had it in the hospital thru his port...120 continuous hrs each time. 1st round was awful....the mouth sores were terrible...couldn't eat anything for days. 2nd round was cut short due to side effects. The dose got lowered and he was able to complete the next 2 rounds. After the first 2 rounds we had another pet scan....he is responding well....considered to be in remission. For how long, we do not know. We just started taking Xeloda orally to, hopefully, keep the cancer in remission.
We also live in FL, on the east coast and we work with a facility that is affiliated with Moffitt. We will have another pet scan in Sept...in the meantime, we pray.
You and Tom have been added to our prayer list. We pray all goes well on Monday and you get good results.
As you have read, there are many people on this site with similar stories...and so many have such a positive attitude. Kitten is unbelievable....I have told her I wish I could bottle her attitude.
I wish you well and keep posting........
Jane

runabe · August 2009

HI JOYCE

I am also a Newbe here That is how I first signed up when my wife Linda was diagnosed I am very lucky live in NJ close to NYC Linda was treated at Sloan-Kettering She had her surgery Pre-surgery was radiation 28 days and 5 rounds of kemo Was first diagnosed Stage 2 well defined cells Lindais DOING FINE I got a lot of help here writing through my tears as i am surd we all have done Good to see you found this GREAT PLACE Please keep us posted Abe

MOE58 · August 2009

Its hard but you can do it
Hi Joyce,

I am Moe, thanks for the compliment welcome to our site, if I wouldn't have had this site I would have gone NUTS while being a caregiver, This site has helped me so much, there were days I thought I couldn't handle no more, and they always lifted me up here, We are here to vent with each other, as we all have this same ugly disease we call CANCER, some of us was operable and some of us are not but that doesn't make us any different, Kitten just calls it a BUMP in the road. My husband might be cancer free now but we have to keep a close watch on it. It has not been an easy road and if you read the post than you know the things I have went through. Please know we are here for each other, not to gripe, or say I am sorry cause we all have been there. There is a wonderful man on this site called WILLIAM MARSHALL, and he will be lifiting your spirits as you know if I didn't think i could handle no more he was always there for me as well as Kitten, of course all the others ones have been there for me too, but kitten had the same kind of surgery my husband had so we are really best friends long distance, or I guess I should say I am her online mother, and then there is william, don't get scared from him he is great but he tells you like it is, at first he scared me to death, but what would I have done without him, probably fell apart.
There is so many waiting for surgery and I can't remember by names, but hopefully everyone will be able to have it soon. Would my husband do it again I don't know. I just want you to know that right now there is just clouds around you but as you go through this tunnell of clouds, and someday reach the end like me there will be a rainbow waiting for you to say he is CANCER FREE, Keep your chin up and faith and be strong, and if you have to cry go to another room, just be positive and he will do fine.

Remember we are here to help weather its a little note or to vent, we are here.

Take Care and hugs
Lori aka MOE

jmstls · August 2009

kitten0385 said:
Nice to "meet" you!
Joyce,

While I am sorry for the circumstances for you finding this site, I am very glad that you did. This is a wonderful site, full of wonderful people. When I was diagnosed back in October, I was also staged at a 3, but was not staged until after surgery as the scans did not show how large the tumor actually was....if they would have known I would have had pre-op chemo and radiation. The path I was put on, I had surgery, and then follow up chemo and radiation. My chemo consisted of Epribucin, Oxiliplatin, and Xeloda. My scans in May were clear, here just two weeks ago, not so much, the cancer's back- there are tumor cells floating around in a bunch of extra fluid in my abdominal cavity. So far there are no tumors formed though. I started chemo again last Friday, taxotere and irinotecan. It sounds like you have some great doctors you're working with, and I wish you the very best!! Welcome to the site!

Cathy

Kitten: Thanks so much for
Kitten: Thanks so much for your welcome and your kind words. I've been thinking of you a lot and you are a strong person and will get through this.

jmstls · August 2009

Donna70 said:
Newbie
Hi Joyce,
I thank you for your prayers and I will of course be praying for you and Jim and everyone on this board. I am staged the same as your husband but I see from his treatment plan even if you are staged the same your treatment may be different. Of course, I have squamous and most of the people here are adenocarcinoma. I hope that Jim will be found tumor free and restaged lower next week. It is so hard with all the stress and worry, sometimes I think we are floating along on the prayers of our friends and family to get us thru. It sounds like you and Jim have been enduring quite a ride on this as Cathy calls it the "bumpy road". I am glad you are a lurker no longer, this board is wonderful to air your concerns and get some really good advice from those who have had the hardwon experience fighting this particular enemy. Good luck!! take care,
Donna70

Donna: Thanks so much for
Donna: Thanks so much for your support. Yes, Tom does have adenocarcinoa and it has been a bumpy road (sometimes that's an understatement). All the different treatment plans out there are sure confusing.

jmstls · August 2009

mumphy said:
Hi
Hi Joyce,

I'm Kathy(mumphy) & Al is my husband he is stage IV it sounds like Tom and Al were diagnosed about the same time and have been through alot the same treatments and side effects.

We live just outside of Pittsburgh & Dr. Luketich is Al's surgeon and you are in good hands also. It's funny how small the world is with the world wide web.

I also started on the site reading Williams posts and am glad to have him here. This is a wonderful site, I have been met alot of wonderful and caring people here. The one thing that I have learned is you never have to say I'm sorry here! We all know what each other is going through, someone is always here to listen even to the little things.

It sounds like you have a big week next week. Please keep us posted on Tom's progress.

Nice to meet you,
May God Bless and Keep you

Kathy

Kathy: Nice to meet you
Kathy: Nice to meet you too, I wish it was under better circumstances for both of us. William's posts have been really helpful. I was so grateful he talked about one of his doctors going to Moffitt.

Talk soon,
Joyce

jmstls · August 2009

runabe said:
HI JOYCE
I am also a Newbe here That is how I first signed up when my wife Linda was diagnosed I am very lucky live in NJ close to NYC Linda was treated at Sloan-Kettering She had her surgery Pre-surgery was radiation 28 days and 5 rounds of kemo Was first diagnosed Stage 2 well defined cells Lindais DOING FINE I got a lot of help here writing through my tears as i am surd we all have done Good to see you found this GREAT PLACE Please keep us posted Abe

Hi Abe: Nice to meet you,
Hi Abe: Nice to meet you, thanks for your kind thoughts. I'm so glad your wife is progressing well. By the way, Tom was also in Vietnam in Artillery.

Joyce

jmstls · August 2009

MOE58 said:
Its hard but you can do it
Hi Joyce,

I am Moe, thanks for the compliment welcome to our site, if I wouldn't have had this site I would have gone NUTS while being a caregiver, This site has helped me so much, there were days I thought I couldn't handle no more, and they always lifted me up here, We are here to vent with each other, as we all have this same ugly disease we call CANCER, some of us was operable and some of us are not but that doesn't make us any different, Kitten just calls it a BUMP in the road. My husband might be cancer free now but we have to keep a close watch on it. It has not been an easy road and if you read the post than you know the things I have went through. Please know we are here for each other, not to gripe, or say I am sorry cause we all have been there. There is a wonderful man on this site called WILLIAM MARSHALL, and he will be lifiting your spirits as you know if I didn't think i could handle no more he was always there for me as well as Kitten, of course all the others ones have been there for me too, but kitten had the same kind of surgery my husband had so we are really best friends long distance, or I guess I should say I am her online mother, and then there is william, don't get scared from him he is great but he tells you like it is, at first he scared me to death, but what would I have done without him, probably fell apart.
There is so many waiting for surgery and I can't remember by names, but hopefully everyone will be able to have it soon. Would my husband do it again I don't know. I just want you to know that right now there is just clouds around you but as you go through this tunnell of clouds, and someday reach the end like me there will be a rainbow waiting for you to say he is CANCER FREE, Keep your chin up and faith and be strong, and if you have to cry go to another room, just be positive and he will do fine.

Remember we are here to help weather its a little note or to vent, we are here.

Take Care and hugs
Lori aka MOE

Hi Lori:
Thanks so much
Hi Lori:

Thanks so much for your words and William didn't scare me at all, it was good to know from someone who has been through it what you might end up dealing with. It has been a very "bumpy road" but hopefully after the scope on Friday it will have been worth it. You didn't know it but I shared your "big girl panties" several times. It was getting kind of crowded in there.

Thanks and talk to you soon.

Joyce

Unknown · August 2009

JaneE2366 said:
Hello Joyce
Welcome Joyce,
I consider myself a newbie as well.....my husband Charlie was diagnosed in March, 5 months ago....although I feel like it was just yesterday. I found this site a few months later. Charlie has EC, stage IV....not operable...mets to lung, liver, lymph nodes, and peritoneal cavity. Has had 4 rounds of chemo...5-FU, taxotere, and cisplatin. He had it in the hospital thru his port...120 continuous hrs each time. 1st round was awful....the mouth sores were terrible...couldn't eat anything for days. 2nd round was cut short due to side effects. The dose got lowered and he was able to complete the next 2 rounds. After the first 2 rounds we had another pet scan....he is responding well....considered to be in remission. For how long, we do not know. We just started taking Xeloda orally to, hopefully, keep the cancer in remission.
We also live in FL, on the east coast and we work with a facility that is affiliated with Moffitt. We will have another pet scan in Sept...in the meantime, we pray.
You and Tom have been added to our prayer list. We pray all goes well on Monday and you get good results.
As you have read, there are many people on this site with similar stories...and so many have such a positive attitude. Kitten is unbelievable....I have told her I wish I could bottle her attitude.
I wish you well and keep posting........
Jane

This comment has been removed by the Moderator

JaneE2366 · August 2009

unknown said:
This comment has been removed by the Moderator

Palm City
We are in Palm City...next door to Stuart....35 minutes north or West Palm Beach. Sorry, we have only been here 2 years...not familiar with Oviedo. Is that close??
Jane

Unknown · September 2009

JaneE2366 said:
Palm City
We are in Palm City...next door to Stuart....35 minutes north or West Palm Beach. Sorry, we have only been here 2 years...not familiar with Oviedo. Is that close??
Jane

This comment has been removed by the Moderator

Unknown · September 2009

This comment has been removed by the Moderator

Islandbayfarm · September 2009

T3 N1
Hi Joyce,

My husband has the same, same age and had surgery Aug 20th.
I'm wondering if Tom has had surgery yet?
He sure had a ton of chemicals!
I'm researching post op chemo and also maybe our guys
may enjoy communicating at some time?

I pray all is going smoothly for you both.

Kathy
kyoung52@gmail.com
I haven't figured this system out yet:)

Islandbayfarm · September 2009

kitten0385 said:
Nice to "meet" you!
Joyce,

While I am sorry for the circumstances for you finding this site, I am very glad that you did. This is a wonderful site, full of wonderful people. When I was diagnosed back in October, I was also staged at a 3, but was not staged until after surgery as the scans did not show how large the tumor actually was....if they would have known I would have had pre-op chemo and radiation. The path I was put on, I had surgery, and then follow up chemo and radiation. My chemo consisted of Epribucin, Oxiliplatin, and Xeloda. My scans in May were clear, here just two weeks ago, not so much, the cancer's back- there are tumor cells floating around in a bunch of extra fluid in my abdominal cavity. So far there are no tumors formed though. I started chemo again last Friday, taxotere and irinotecan. It sounds like you have some great doctors you're working with, and I wish you the very best!! Welcome to the site!

Cathy

Panther, not kitten!!!
Hi Cathy,

I'new here and have been so inspired by your youth and brave, positive attitude. You are a panther and you will out run cancer!!!!

I'm praying your pain is less everyday and for the day they will reverse your colostomy.
Also for your adoring husband! What a way to start a marriage.

I'm wondering what test showed tumor cells floating around in extra fluid in your abdominal
cavity? CT or pet?

My 60 yr old sweet, husband is stage 3 n1, had chemo/rad, very successful surgery aug 20th
with 16 lymph nodes removed & five have tumors. He will need a different chemo plan .

You are in my prayers daily and your progress updates are so encouraging.
Keep sprinting!

Kathy
kyoung52@gmail.com

kitten0385 · September 2009

Islandbayfarm said:
Panther, not kitten!!!
Hi Cathy,

I'new here and have been so inspired by your youth and brave, positive attitude. You are a panther and you will out run cancer!!!!

I'm praying your pain is less everyday and for the day they will reverse your colostomy.
Also for your adoring husband! What a way to start a marriage.

I'm wondering what test showed tumor cells floating around in extra fluid in your abdominal
cavity? CT or pet?

My 60 yr old sweet, husband is stage 3 n1, had chemo/rad, very successful surgery aug 20th
with 16 lymph nodes removed & five have tumors. He will need a different chemo plan .

You are in my prayers daily and your progress updates are so encouraging.
Keep sprinting!

Kathy
kyoung52@gmail.com

Fluid
Hi Kathy,

I had my 3 month CT scan, and it showed fluid in my abdominal cavity, and my belly was a bit distended. So they sent me in to have my belly tapped and drained, and then they tested the fluid for cancer cells, and there they were. That's how we found out. The scans won't actually show that there's cancer cells in the fluid, other testing did. Now I'll have to have further testing to see what's blocking my colon, either they missed that there's another tumor or there's scar tissue from my previous surgery. Not sure when I'll have testing for all that. I was also stage 3 when I was first diagnosed, with a couple lymph nodes involved....I should have had pre-op chemo/rad, but scans didn't show how big my tumor was, they were saying stage 2 at the most, but once they went in my tumor was the size of a tennis ball. and, you're right, I do have an adoring husband, he is a wonderful man!

Cathy

Newbie

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