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mrsbotch
mrsbotch Member Posts: 349
edited March 2014 in Esophageal Cancer #1
I would like to thank so many of you for responding to my husbands recurrence of EC. We went to a very prominent surgeon in Atlanta, Georgia for the minamilly evasive procedure. He had done quite a few of these procedures.
We did get a 2nd opinion and will start next Tuesday with very aggressive chemo. He will take Taxetere, cisplatin , and then will go home with a small container that includes 5 FU.
We are going to Georgia Cancer Specialists in Blairsville, Georgia with a Dr. John Manfredi. He has been a dr for 44 years and is very close to many oncologists at Duke Unversity. He had just gone to a conference on Esophageal cancer the week before he met us.
He is a very nice man who says hopefully he can put my husband in a good remission. We feel very confident with him.
The surgeon did not do a biopsy as he said at the time it was too dangerous as he thought he would tear the esophagus.
We have a very good friend who was a pathologist and I have given him all the drs reports and PET scan reports. He is going to really go over them and see what they did.
I had called Cancer Centers of America(we decided against them) and also MD Anderson.
The woman I got on the phone was unbelievably rude and said they only had 2 drs there that dealt with esophageal cancer and they could not see him till the end of Oct.

Up until this cancer my husband had never been in a hospital. He used to run All the road races), exercised at least 4 times a week at a gym. He was the one out of all his friends that really was in great shape.
He is 63 years old, never drank (At all), and quit smoking 30 years ago. Go Figure.

I have been using tumeric daily , along with flaxseed in his diet. He gained a pound .Also many protein shakes.
He is coughing alot and there may be more fluid buildup.He is taking Roxicet for pain and that really helps him calm down.
I will certainly ask about the HER-2 tumor marker and about Herceptin.
I have been told the chemo he is going on is very aggressive. I hope so.
I wish he were feeling better going into this.
The stent is working and he is eating. The oncologist started him on Prednisone yesterday to hopefully increase his appetite. He has the port put in next Tues morning and will start the chemo right after.

I feel better knowing I can write to all of you and get some good pointers on what to do.Thank you. I know this is really in God's hands so we will just pray that he comes thru this.

I will keep you posted on all his progress and YES we will have hope

Comments

  • Tina Blondek
    Tina Blondek Member Posts: 1,500 Member
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    Welcome
    Hello MrsBotch
    I too was a caregiver. I was the caregiver for my dad. He passed away in March from esophageal cancer with mets to the liver. My dad also used roxicet for his pain. This is a wonderful pain med. It does mellow them out quite well. He also had lost weight and lost his appetite. The dr also gave him prednisone to increase his appetite. It did do that, but with it came a whole lot of other side effects. Be aware of these. Predinsone is a steroid. I was so happy to read that you went ahead an got the second opinion. Sounds like you and his dr are on the right track. I am glad the second stent is working and that he is able to eat now. These are all good, positive things. You have to take the good with the bad. My dad was also in pretty good shape prior to his dx. We feel that his ec came from many years of chronic acid reflux. You are doing a wonderful job as his caregiver. Remember to take sometime to catch your breath and have some "me" time. It is very important to do so. I will be thinking and praying for you both. Keep in touch.
    Tina in Va
  • sandy1943
    sandy1943 Member Posts: 824
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    Hi, I am from the atlanta
    Hi, I am from the atlanta area and had ivor Lewis EC surgery in May 2008. I had my chemo at Georgia cancer Specialist. I have an excellent oncologist and would never change. I don't see too many on this site from the Atlanta area.
    I had an excellent surgeon at Emory Hosipital. . At the time I had never heard of the mie and he never mentioned it. I was going to ask him about it whan I went back for a check up, but decided the surgery was behind me--I did well--so why bother.Even so, I will encourage all to do their homework before undergoing any surgery.
    Keep us updated,
    My prayers are with you both,
    Sandra
  • mrsbotch
    mrsbotch Member Posts: 349
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    sandy1943 said:

    Hi, I am from the atlanta
    Hi, I am from the atlanta area and had ivor Lewis EC surgery in May 2008. I had my chemo at Georgia cancer Specialist. I have an excellent oncologist and would never change. I don't see too many on this site from the Atlanta area.
    I had an excellent surgeon at Emory Hosipital. . At the time I had never heard of the mie and he never mentioned it. I was going to ask him about it whan I went back for a check up, but decided the surgery was behind me--I did well--so why bother.Even so, I will encourage all to do their homework before undergoing any surgery.
    Keep us updated,
    My prayers are with you both,
    Sandra

    hi
    If you don't mind me asking who was your dr at Emory? Thats where my husband went. He did have the MIE but no chemo post -op. I wish the surgeon had told us to then. Now a year and a half later it has spread to the chest cavity. He starts the chemo on Tuesday. I sure pray it works.
  • mrsbotch
    mrsbotch Member Posts: 349
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    sandy1943 said:

    Hi, I am from the atlanta
    Hi, I am from the atlanta area and had ivor Lewis EC surgery in May 2008. I had my chemo at Georgia cancer Specialist. I have an excellent oncologist and would never change. I don't see too many on this site from the Atlanta area.
    I had an excellent surgeon at Emory Hosipital. . At the time I had never heard of the mie and he never mentioned it. I was going to ask him about it whan I went back for a check up, but decided the surgery was behind me--I did well--so why bother.Even so, I will encourage all to do their homework before undergoing any surgery.
    Keep us updated,
    My prayers are with you both,
    Sandra

    Hi
    Sandy

    I just incorrectly put my comment to you under my name.
    Anyhow your news is so good.

    We also had a surgeon at Emory do my husbands procedure. He never suggested chemo and look where we are now . he starts chemo on Tuesday and it is in his chest cavity.

    I wish he had suggested it then. Who was your oncologist at Georgia Cancer specialists. If you don't want to give names out over the site maybe we could e-mail each other. Please let me know what they used on you for chemo.

    Thank you
  • sandy1943
    sandy1943 Member Posts: 824
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    mrsbotch said:

    Hi
    Sandy

    I just incorrectly put my comment to you under my name.
    Anyhow your news is so good.

    We also had a surgeon at Emory do my husbands procedure. He never suggested chemo and look where we are now . he starts chemo on Tuesday and it is in his chest cavity.

    I wish he had suggested it then. Who was your oncologist at Georgia Cancer specialists. If you don't want to give names out over the site maybe we could e-mail each other. Please let me know what they used on you for chemo.

    Thank you

    Hi, I don't mind giving my
    Hi, I don't mind giving my Drs. names. I still go to them. My surgeon was Dr Joseph Miller Jr. He was chief of thoracic surgery for a long time. He has retired from Emory and is now with Piedmont as chief. My oncologist is Dr Shyan Khanwani At Fayetteville Georgia cancer specialists. I had 4 rounds of Cisplatin,Epirubicin, and 5-Fu. I had pre-op chemo because of 2 lymph node involement in stomach.2 rounds of chemo were ordered afterwards because the biopsy showed one node still positive, but because of complications it was stopped 2 weeks after the first round started. All my ct scans have been good. Will get results from last one Monday.
    I don't understand not ordering chemo.
    Sandra
  • mrsbotch
    mrsbotch Member Posts: 349
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    sandy1943 said:

    Hi, I don't mind giving my
    Hi, I don't mind giving my Drs. names. I still go to them. My surgeon was Dr Joseph Miller Jr. He was chief of thoracic surgery for a long time. He has retired from Emory and is now with Piedmont as chief. My oncologist is Dr Shyan Khanwani At Fayetteville Georgia cancer specialists. I had 4 rounds of Cisplatin,Epirubicin, and 5-Fu. I had pre-op chemo because of 2 lymph node involement in stomach.2 rounds of chemo were ordered afterwards because the biopsy showed one node still positive, but because of complications it was stopped 2 weeks after the first round started. All my ct scans have been good. Will get results from last one Monday.
    I don't understand not ordering chemo.
    Sandra

    hi
    My husband's surgeon was Dr. Dan Miller at Emory. he is now chief of thorasic surgury. We liked him very much but with Stage 11B I still don't know why they didn't offer chemo. He said there was no need after he did the seophagectomy.

    Anyhow we pray for good results with the chemo. he will be taking cisplatin, Taxetere once every 21 days and the night of chemo he will come home with the 5FU for a 96 hr drip. I have heard this is quite aggressive chemo. Did you do well with it?

    I am really scared for my husband. Did you have to have a feeding tube? My husbands weight is really down but he can eat.

    Thanks so much for the info
  • sandy1943
    sandy1943 Member Posts: 824
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    mrsbotch said:

    hi
    My husband's surgeon was Dr. Dan Miller at Emory. he is now chief of thorasic surgury. We liked him very much but with Stage 11B I still don't know why they didn't offer chemo. He said there was no need after he did the seophagectomy.

    Anyhow we pray for good results with the chemo. he will be taking cisplatin, Taxetere once every 21 days and the night of chemo he will come home with the 5FU for a 96 hr drip. I have heard this is quite aggressive chemo. Did you do well with it?

    I am really scared for my husband. Did you have to have a feeding tube? My husbands weight is really down but he can eat.

    Thanks so much for the info

    Hi, I had two of
    Hi, I had two of these--Actually I did pretty well with them. I naver lost weight while on chemo. Even with the nausea, I never lost my appetite. My 98 lb. weight loss came after surgery,but after the first month I always ate and had an appetite. Don't really know why the weight loss. I had a feeding tube, but it was never needed except in the hosipital. The 5-fu pulled my counts down and I would have to come off it and take five days of shots. This caused me to have to take an extra round of chemo.
    Two weeks after starting post- op chemo I developed a blood clot in the Jugular vein. My oncologist suggested I stop chemo because it was destroying my body. I did, and put my trust in God. my firat ct scan after that showed I was disease free.
    When I thought my dr. had retired I was thinking about going to Your Dr. I read up on him, but then I found out mine was at Piedmont so I wanted to stay with him.
    Are you seeing Dr. Miller now? Please keep us up to date.
    My prayers are with you both
    Sandra
  • mrsbotch
    mrsbotch Member Posts: 349
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    sandy1943 said:

    Hi, I had two of
    Hi, I had two of these--Actually I did pretty well with them. I naver lost weight while on chemo. Even with the nausea, I never lost my appetite. My 98 lb. weight loss came after surgery,but after the first month I always ate and had an appetite. Don't really know why the weight loss. I had a feeding tube, but it was never needed except in the hosipital. The 5-fu pulled my counts down and I would have to come off it and take five days of shots. This caused me to have to take an extra round of chemo.
    Two weeks after starting post- op chemo I developed a blood clot in the Jugular vein. My oncologist suggested I stop chemo because it was destroying my body. I did, and put my trust in God. my firat ct scan after that showed I was disease free.
    When I thought my dr. had retired I was thinking about going to Your Dr. I read up on him, but then I found out mine was at Piedmont so I wanted to stay with him.
    Are you seeing Dr. Miller now? Please keep us up to date.
    My prayers are with you both
    Sandra

    Hi
    Sounds like you made it through just fine. I am glad you did not lose weight with the chemo.
    I really like Dr. Miller, I think he is very very competant and yes we will go back to him for follow-ups. I wonder why your dr went to Piedmont.
    I would stick with the one I started with too. Unfortunately for us its a 2 1/2 hr drive each way but thats a small price to pay. I am so glad the Chemo will be in Blairsville tho.

    My husband eats pretty well but still gets full so fast. Thats why no significant weight gain. If he can make it thru this chemo and GET RID of this cancer .............
    EC is so horrible for all involved.
    We did have our Pathologist friend read the scan results and the drs reports.
    He also seems to think that if they can get the other surface of this cancer off the plural space we should be able to re-stage this.

    You said your was in your chest. How far advanced did you say and were their lymph nodes involved.
    I would really love to keep in touch as we are so close in proximity and sounds like maybe have a lot in common with this BEAST.
  • mrsbotch
    mrsbotch Member Posts: 349
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    sandy1943 said:

    Hi, I had two of
    Hi, I had two of these--Actually I did pretty well with them. I naver lost weight while on chemo. Even with the nausea, I never lost my appetite. My 98 lb. weight loss came after surgery,but after the first month I always ate and had an appetite. Don't really know why the weight loss. I had a feeding tube, but it was never needed except in the hosipital. The 5-fu pulled my counts down and I would have to come off it and take five days of shots. This caused me to have to take an extra round of chemo.
    Two weeks after starting post- op chemo I developed a blood clot in the Jugular vein. My oncologist suggested I stop chemo because it was destroying my body. I did, and put my trust in God. my firat ct scan after that showed I was disease free.
    When I thought my dr. had retired I was thinking about going to Your Dr. I read up on him, but then I found out mine was at Piedmont so I wanted to stay with him.
    Are you seeing Dr. Miller now? Please keep us up to date.
    My prayers are with you both
    Sandra

    Good luck Monday
    PLEASE PLEASE PLEASE Let me know how your scan goes on Monday. God be with you Sandra.
  • kstorger
    kstorger Member Posts: 5
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    Port
    The port is really nice. Easy to hook up and use. Never let any med personnel use this for anything other than chemo drugs. I had an EMT try to use it for a blood draw on an ambulance call. Also a RN tried to use it as an IV saline port. NO--NO--I told her, she even argued with me, until the floor nurse came in and corrected her. Never did see her again.
    I call my port "Chester" and will probably have him for a long time.
  • mrsbotch
    mrsbotch Member Posts: 349
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    kstorger said:

    Port
    The port is really nice. Easy to hook up and use. Never let any med personnel use this for anything other than chemo drugs. I had an EMT try to use it for a blood draw on an ambulance call. Also a RN tried to use it as an IV saline port. NO--NO--I told her, she even argued with me, until the floor nurse came in and corrected her. Never did see her again.
    I call my port "Chester" and will probably have him for a long time.

    Thanks
    Thats really great to know. Why will you have the port for a long time?
  • sandy1943
    sandy1943 Member Posts: 824
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    mrsbotch said:

    Hi
    Sounds like you made it through just fine. I am glad you did not lose weight with the chemo.
    I really like Dr. Miller, I think he is very very competant and yes we will go back to him for follow-ups. I wonder why your dr went to Piedmont.
    I would stick with the one I started with too. Unfortunately for us its a 2 1/2 hr drive each way but thats a small price to pay. I am so glad the Chemo will be in Blairsville tho.

    My husband eats pretty well but still gets full so fast. Thats why no significant weight gain. If he can make it thru this chemo and GET RID of this cancer .............
    EC is so horrible for all involved.
    We did have our Pathologist friend read the scan results and the drs reports.
    He also seems to think that if they can get the other surface of this cancer off the plural space we should be able to re-stage this.

    You said your was in your chest. How far advanced did you say and were their lymph nodes involved.
    I would really love to keep in touch as we are so close in proximity and sounds like maybe have a lot in common with this BEAST.

    Hi, When I compare my
    Hi, When I compare my treatment with others on here, I did do very well.During pre-opt chemo, The only problems I had was nausea and my counts dropping real low. I never had to go to the hospital. I was stage 111 with two lymph nodes in the stomach that were positive. After surgery, out of 28 tested nodes, 1 was positive. More chemo was ordered. Two weeks into the first chemo I developed a blood clot in the Jugular vein, so chemo was stopped. All my scans since has been negative. I didn't take radiation.

    My dr.was at Emory 35 yrs before retiring. Not sure why he moved but glad he's still practicing.

    Blairsville is a beautiful part of Ga. I live way too close to Atlanta--in Conley, south of Atlanta.
    It will be great keeping in touch. Like I said before, I haven't seen but one other from Georgia.

    I get my results from my scan tomorrow. It has been six months since the last one. I always celebrate when I get a good report. I will post tomorrow with results.

    I need to learn to write my staging out correctly instad of going through writing it all out.
    Sandra
  • json_2011
    json_2011 Member Posts: 100
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    hello from Ellijay
    We got a little run around trying to get in with the Bigs I guess. Well after spending weeks trying this , Mother made the decision to stick it out at home. Come to find out she is recieving the same cocktail at the Mayo would have started out , in Thomasville GA. I do believe doctors talk to doctors . Good luck with this as we are all in this thing togeather.



    Jason
  • json_2011
    json_2011 Member Posts: 100
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    hello from Ellijay
    We got a little run around trying to get in with the Bigs I guess. Well after spending weeks trying this , Mother made the decision to stick it out at home. Come to find out she is recieving the same cocktail at the Mayo would have started out , in Thomasville GA. I do believe doctors talk to doctors . Good luck with this as we are all in this thing togeather.



    Jason
  • oriontj
    oriontj Member Posts: 375
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    Taxotere and Cisplatin
    My husband was on that without the third one starting in Jan after his ex came back ... he tolerated it well except the neuropathy in his feet. Woke up one morning and really couldn't walk...so watch that carefully and let your drs know if it happens. Taste of course went out the window. But he still eats and maintains his weight. They dropped the cisplation due to the neuropathy and now he has taxotere only, so we'll see what happens with this in a few weeks.

    Good luck

    jan