Off to a very slow and rough start, but treatment finally began this week for my dad

DanaMB3

Hi everyone:

My dad (66 years old) was diagnosed with advanced stage 3 EC (at the GE junction). It has penetrated 5 layers of the esophagus, is in 8 regional lymph nodes, no metastasis. (Can someone help me with the TNM classification for future reference - thanks) His first endoscopy which found the tumor, was December 15th and between the holidays, doctors out of town, getting a 2nd opinion, deciding to go with a clinical trial - then that trial getting postponed - we have been off to a VERY slow start. His first round of chemo began this past Monday. He is getting a round of FOLFOX, and then on Jan 31st he will begin Cisplatin/5-FU and radiation (5 days/week for 5 weeks). This course of treatment was decided by the head of the EC department at the highly regarded University of Chicago. She is "running the show", however treatment is being carried out at a hospital closer to my parents home. We met with the thoracic surgeon at the University of Chicago, who reviewed all of my dads tests and deemed him a "highly probable" candidate for surgery (would be MIE). All will depend on how he responds to the chemo/rad.

The oncologist said that he shouldn't expect to feel "too bad" with this first round of chemo. Unfortunately that has not been the case. Last night the nausea hit and my dad has not been able to keep even his protein shakes down. He was already down almost 20 pounds so this is not good for him. They got him a new RX for the nausea but that did not seem to help either. He went earlier this evening for fluids via IV, hopefully that will help.
I am disheartened by the rough start, and fearful for how bad things will get when the more intense round of chemo, plus the radiation begins.

Just wanted to share where we are today...and welcome any encouragement, feedback, questions, suggestions, etc.

sal314

Sorry for the Bad Start
One thing with nausea...once it does start, it's hard to stop. And, you have to take the medicine before you start to feel sick. Otherwise, it's useless.

I know it's disheartening, but you have to remain positive. Setbacks are bound to happen and you just have to get through them and continue on.

My dad is being treated at a hospital that's associated with U of Chicago. His oncologists meets weekly with that Dr. that's head of EC at U of C. I think your dad is in good hands. No one knows how one will react to chemo. Everyone is so different. But they will surely make adjustments on the next round.

As far as your dad's weight, you should talk to a dietician if you haven't already. My dad is drinking high level protein drinks and that has helped him a lot. He lost 20 pounds in the beginning as well, but has gained it all back plus some, believe it or not. He needs to try to get as many calories in him in between treatments. It's very common to lose weight while going through your chemo regimen.

Keep us posted on your dad's progress.

Blessings,
Sally

oriontj

What can we do to help?
My husband...treated by the same dr at the u of c...had no nausea at all from the chemo..I know they will be giving him Zofran with his chemo...and my husband has Zofran, Ativan and one other...since his recurred, his chemo doseage a member of the taxol family and carboplatin...in the cisplatin family...and it's much more at one time than he had before..and so far with this round no problems.

When he was going for radiation and chemo...chemo was on Wed and hydration Thursday and Friday and radiation every day for 6 weeks. Each treatment is of course tailored to the patient and he was in a clinical trial the first time around.

This start of chemo has brought no problems yet...notice I mentioned yet.

He started with all nausea drugs at home ahead of time...

Everyone reacts so differently to chemo and they have many tricks in their bag for nausea..and when you call...they will gladly prescribe a different one or a combination of drugs.

I'm so sorry you Dad is having problems. My husband and I decided not to do the chemo close to home but to do at the u of c...he feels more comfortable and confident there. Neither of us liked the facility only 5 minutes away from our house.

Both Dr. Villifor and Dr. Campbell spent a lot of time with him and so did Jennifer..something that is missing close to home...they weren't getting his anti nausea meds ahead of time and you can't wait on those...they need to be taken as directed right at the start. First night home.

I know it's a pain to get into the u of c for treatment...for us it's a ride on the Tollroad, skyway down Stoney Island in not such a good part of town. Or it's a train ride up with me picking him up. Last year we did it very day for 6 weeks...a lot on the train..me taking him there and picking him up in Chicago depending on how tired he was.

There is blood work every weeks...

Did you get the sheets describing the side effects of the drugs? We got that and the chemo nurse read them to us...and then Jennifer went over the anti nausea meds...and Dr. Villifor ordered another one...she called it in that afternoon and we picked up on the way home..

To illustrate the difference...after this treatment we went to the Casino boat and he and I both had polish sausage sandwiches...we were hungry...while a friend of his ran a 105 fever after chemo and spent 4 days in the hospital.

Your father will be tired when the radiation starts...and since he was intially in a clinical, we had no choice...he had to have everything done at the u. of c...and they were wonderful.
It's not too late to decide to do it there. We had decided to go locally for this round but if you read my post..I was appalled at how things were run so we opted to go back into the Chicago.

Would it help if you father talked with my husband...maybe Tom could help him and give him encouragement...he's always been upbeat...that's your call...talk to your Dad and see and let me know...I can email your our phone number...

I so wish I could take away your Father's nausea...everything is horrible enough without that.

jan

linda1120

Encouragement
I want to encourage you in the beginning of this wild ride your family is on. My husband had bad reactions to chemo and it is so very important to get ahead of the nausea. Be sure to have them give him anti-nausea drugs ahead of time. I went through cancer several years ago and was able to control the nausea because I was given anti-nausea drugs before chemo. Zofran and Emend (or Amend) are good anti-nausea drugs. We found that hydration was the most important factor for my husband. The 5FU is tough and causes severe diarrhea. My husband became severely dehydrated and learned to go to have hydration daily after chemo. The radiation caused him to be extremely tired. He slept a great deal of the time. He also lost weight, had to have transfusions and more. After the second chemo treatment and last radiation he ended up in the hospital for eleven days. There is a good ending to this story! Jim is lying next to me in bed recovering from a MIE at Oregon Health & Science University in Portland, Oregon. He has his new esophagus and feeding tube and after twenty lymph nodes and his esophagus being tested for cancer he has been deemed cancer free! We are celebrating and I have to be honest with you, I truly thought I was going to lose him. We came close a couple of times, but he is doing well.
He is 68 years old and too was a stage III, and his cancer was at the GE Junction. I am glad you are at a University Hospital. We had to travel from Idaho to Oregon, but it has been worth it to get the cutting edge treatment that has resulted in Jim's state of the art surgery.

My thoughts and prayers will be with you and your family. Be patient, be proactive, and learn all you can about this very aggressive cancer. This site is full of knowledge. Be sure and check out all of the links that William may have already provided for you, or will if he hasn't already.

If you have any questions and want to e-mail me privately you can through the CSN e-mail on this site.

Linda

Unknown

This comment has been removed by the Moderator

DanaMB3

sal314 said:

Sorry for the Bad Start
One thing with nausea...once it does start, it's hard to stop. And, you have to take the medicine before you start to feel sick. Otherwise, it's useless.

I know it's disheartening, but you have to remain positive. Setbacks are bound to happen and you just have to get through them and continue on.

My dad is being treated at a hospital that's associated with U of Chicago. His oncologists meets weekly with that Dr. that's head of EC at U of C. I think your dad is in good hands. No one knows how one will react to chemo. Everyone is so different. But they will surely make adjustments on the next round.

As far as your dad's weight, you should talk to a dietician if you haven't already. My dad is drinking high level protein drinks and that has helped him a lot. He lost 20 pounds in the beginning as well, but has gained it all back plus some, believe it or not. He needs to try to get as many calories in him in between treatments. It's very common to lose weight while going through your chemo regimen.

Keep us posted on your dad's progress.

Blessings,
Sally

Thanks Sally
After talking further with my mom I guess they did give him anti-nausea meds via IV before they started the chemo. I guess he is just going to be one of the people who chemo hits really hard He has protein shakes, but can't even bring himself to get them down. He went to the doctors office today for hydration and was talking to the nurse about a feeding tube. He is pretty open to it, so while it wouldn't be anyones first choice we are happy he seems like he might be ok with the idea. Many thanks for your words and encouragement...

DanaMB3

oriontj said:

What can we do to help?
My husband...treated by the same dr at the u of c...had no nausea at all from the chemo..I know they will be giving him Zofran with his chemo...and my husband has Zofran, Ativan and one other...since his recurred, his chemo doseage a member of the taxol family and carboplatin...in the cisplatin family...and it's much more at one time than he had before..and so far with this round no problems.

When he was going for radiation and chemo...chemo was on Wed and hydration Thursday and Friday and radiation every day for 6 weeks. Each treatment is of course tailored to the patient and he was in a clinical trial the first time around.

This start of chemo has brought no problems yet...notice I mentioned yet.

He started with all nausea drugs at home ahead of time...

Everyone reacts so differently to chemo and they have many tricks in their bag for nausea..and when you call...they will gladly prescribe a different one or a combination of drugs.

I'm so sorry you Dad is having problems. My husband and I decided not to do the chemo close to home but to do at the u of c...he feels more comfortable and confident there. Neither of us liked the facility only 5 minutes away from our house.

Both Dr. Villifor and Dr. Campbell spent a lot of time with him and so did Jennifer..something that is missing close to home...they weren't getting his anti nausea meds ahead of time and you can't wait on those...they need to be taken as directed right at the start. First night home.

I know it's a pain to get into the u of c for treatment...for us it's a ride on the Tollroad, skyway down Stoney Island in not such a good part of town. Or it's a train ride up with me picking him up. Last year we did it very day for 6 weeks...a lot on the train..me taking him there and picking him up in Chicago depending on how tired he was.

There is blood work every weeks...

Did you get the sheets describing the side effects of the drugs? We got that and the chemo nurse read them to us...and then Jennifer went over the anti nausea meds...and Dr. Villifor ordered another one...she called it in that afternoon and we picked up on the way home..

To illustrate the difference...after this treatment we went to the Casino boat and he and I both had polish sausage sandwiches...we were hungry...while a friend of his ran a 105 fever after chemo and spent 4 days in the hospital.

Your father will be tired when the radiation starts...and since he was intially in a clinical, we had no choice...he had to have everything done at the u. of c...and they were wonderful.
It's not too late to decide to do it there. We had decided to go locally for this round but if you read my post..I was appalled at how things were run so we opted to go back into the Chicago.

Would it help if you father talked with my husband...maybe Tom could help him and give him encouragement...he's always been upbeat...that's your call...talk to your Dad and see and let me know...I can email your our phone number...

I so wish I could take away your Father's nausea...everything is horrible enough without that.

jan

Thanks Jan
We were all set to have my dad carry out his treatment at U of C. First with a trial, and even then when the trial was postponed. Then Dr. V spoke at length with my parents and said that she knows the more local oncologist really well and that they would be in very good hands with him. So...they felt comfortable with the closer to home option. She is still "in charge" so to speak and available for any questions for them. Hopefully things improve for my dad and if not, maybe a visit to Dr. V herself would be in order. I went with my dad to his first round of chemo and thought the facility was fine and the nurse was great - so, no red flags - yet.

I will check with my dad about talking to your husband and let you know. Thank you so much.
He may be apprehensive to do so, but I think it would be great for him to talk to someone going through the same thing. Thanks again!

DanaMB3

linda1120 said:

Encouragement
I want to encourage you in the beginning of this wild ride your family is on. My husband had bad reactions to chemo and it is so very important to get ahead of the nausea. Be sure to have them give him anti-nausea drugs ahead of time. I went through cancer several years ago and was able to control the nausea because I was given anti-nausea drugs before chemo. Zofran and Emend (or Amend) are good anti-nausea drugs. We found that hydration was the most important factor for my husband. The 5FU is tough and causes severe diarrhea. My husband became severely dehydrated and learned to go to have hydration daily after chemo. The radiation caused him to be extremely tired. He slept a great deal of the time. He also lost weight, had to have transfusions and more. After the second chemo treatment and last radiation he ended up in the hospital for eleven days. There is a good ending to this story! Jim is lying next to me in bed recovering from a MIE at Oregon Health & Science University in Portland, Oregon. He has his new esophagus and feeding tube and after twenty lymph nodes and his esophagus being tested for cancer he has been deemed cancer free! We are celebrating and I have to be honest with you, I truly thought I was going to lose him. We came close a couple of times, but he is doing well.
He is 68 years old and too was a stage III, and his cancer was at the GE Junction. I am glad you are at a University Hospital. We had to travel from Idaho to Oregon, but it has been worth it to get the cutting edge treatment that has resulted in Jim's state of the art surgery.

My thoughts and prayers will be with you and your family. Be patient, be proactive, and learn all you can about this very aggressive cancer. This site is full of knowledge. Be sure and check out all of the links that William may have already provided for you, or will if he hasn't already.

If you have any questions and want to e-mail me privately you can through the CSN e-mail on this site.

Linda

Thank you Linda
Thanks for your encouraging words and story Linda. I certainly need it!

Congrats once again on your husbands recovery. I pray that it all gets better from here for you guys.

DanaMB3

unknown said:

This comment has been removed by the Moderator

Thanks William
Your encouraging words were just what I needed. You are very right in that we need to keep our eyes on the prize. Somehow I already forgot that in all the worry for how badly he is feeling right now. I am going to share your message with my dad. Thank you very much for the offer to talk via phone. I'll mention it to my dad, though he is not overly open to talking about this - yet, I do think it would be great for him. Many thanks again, for everything, William.

sandy1943

Hi, I took Emend before
Hi, I took Emend before every round of Chemo. I'm sure it helped. I had other nausea drugs to take. I'm hardheaded and to begin with I waited until I was already getting sick to take it, and then it wouldn't do any good.I finally learned how to take it. Even so, the longer I took chemo, the worst I felt. From what I've known about others, I did extremely well with the chemo. I always tried to stay positive about it, because it was better than the alternative. I was diagnosed In Nov.2007 with stage 111 . after having chemo and surgery, my scans are still showing cancer free.Praise the Lord!!!!
Sandra

ArchTB

Hi
Hi Dana,

My husband has similar diagnosis (tumor at the GE junction, regional lymph nodes affected, no distant mets). He is Stage 3 (T3 N1 M0).

He started chemo 3 weeks ago and was doing pretty good until he started to feel discomfort (not even real pain!) in his legs. While we were at the hospital we decided to check his legs, and the ultrasound detected blood clots. Now he is on blood thinners, giving himself shots twice a day. He had no problems with nausea, but his stomach was bothering him - no diarrhea, just discomfort. Immodium seemed to take care of that.

So, do not disregard any complaints you dad might have. It worth checking with doctors if everything is ok. Good luck!

Olya