I'm back (I think)

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JimboC
JimboC Member Posts: 264
in Esophageal Cancer #1
Well, today marks my 4 week date since MIE in Pittsburgh. I'm probably back about 60-70% to normal. I'm still fairly sore and I rest a lot during the day. I'm averaging about a pound a day weight loss. I know I should be eating more but I'm still trying to take it easy on my new stomach. I'm still on soft food. I've got about a week and a half left on soft foods until I can begin reintroducing my normal diet.

For anyone considering the MIE at UPMC, I cannot speak highly enough of the entire staff at UPMC! I met with Dr. Luketich the day before my surgery and from then on, I saw primarily Dr. Levy. Top notch guy. He was straight up with me, kept me very informed even with a little leak complication I had. Everyone in the hospital itself was so good to me. I had a few problems and had to be on the ventilator overnight and I was sedated (my request) for the most of it but I remember Yvonne giving me a bath in the middle of the night to relax me. Every nurse I was assigned was so good and professional. Even the young lady that came in to clean my room was nice. We had quite a good chat and found out she was from Alabama.

When you're getting info for going to UPMC, you will probably be dealing with one of Dr. Luketich's CRNPs named Angela. She is so helpful. Anytime day or night when I would email her, I would usually get an email back in fairly quick order. I've got to tell you, to me, that showed true dedication. One of the high points of my stay in Pittsburgh was getting to meet her.

Of the nodes that they took, 3 came back positive for cancer. I will be starting post op chemo on Tuesday. Same regime as before, ECF with the F being continuous. That will be for 9 weeks. More scary stuff but this is a tough cancer so you've got to be tough as well.

Now that I'm feeling better, I'm going to try to be a little more active. This is a scary disease and the thought of an esophagectomy is pretty spooky itself even if you're going the MIE route. I would be happy to talk to anyone about my experience.

Take care everyone and thank you so much for the prayers and concerns.

Comments

  • ham6789
    ham6789 Member Posts: 29
    #2
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    I'm back,I think
    hey jumbo, how was the drive home? I'm sorry to hear about the chemotherapy requirement, but I know that you wll beat the disease just as you have so far. thanks for your visit with me @UPMC.
    my experience here in Pittsburgh has been first class. looking forward for my last report card from Dr.Luketich scheduled for Aug,4th
    I am hoping that they will remove all my tubes.
    I will continue to pray for you.......A friend ham6789
  • hopper52
    hopper52 Member Posts: 108
    #3
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    Welcome Back Jimbo
    Jimbo,

    Glad to hear you're doing well. I wanted to ask you, did you lose weight prior to your MIE? I've lost quite a bit since I started Chemo/Radiation. My surgery is still about a month out after my PET and CT scans on Aug 16th. Appears I'll be doing the MIE with Dr Meredith at Moffitt Cancer Center in Tampa. With the weight I've lost already and continuing through the surgery timeframe I'm beginning to get concerned. I've gone from 205 to 165 since my diagnosis on April 4th. Any hints that you've experienced would be appreciated.

    Once again, glad to hear you're doing well

    Michael Daniels (T3N0M0)
    Brandon, Florida
  • mruble
    mruble Member Posts: 174
    #4
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    Welcome back!
    Glad to hear your recovering is going well. I hope you breeze right through the clean-up chemo!

    Mary
  • jojoshort
    jojoshort Member Posts: 230 Member
    #5
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    Great news!
    So glad to see you posting. Isn't it nice that the operation is over and done with? One day at a time. You are amazing.
    Jo-Ann
  • jthomas233
    jthomas233 Member Posts: 85
    #6
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    hopper52 said:

    Welcome Back Jimbo
    Jimbo,

    Glad to hear you're doing well. I wanted to ask you, did you lose weight prior to your MIE? I've lost quite a bit since I started Chemo/Radiation. My surgery is still about a month out after my PET and CT scans on Aug 16th. Appears I'll be doing the MIE with Dr Meredith at Moffitt Cancer Center in Tampa. With the weight I've lost already and continuing through the surgery timeframe I'm beginning to get concerned. I've gone from 205 to 165 since my diagnosis on April 4th. Any hints that you've experienced would be appreciated.

    Once again, glad to hear you're doing well

    Michael Daniels (T3N0M0)
    Brandon, Florida

    MARINOL??
    Michael-

    Has your oncologist offered you MARINOL? (it's some sort of pill form of medical marijuana). Mine offered it to me and said it would really help me keep my weight up during chemo, reduce nausea, and it would "make the weekends go by better.." I did not take him up on the offer.

    Also, are you on any anti-anxiety medication? The stress of the diagnosis probably raises your metabolism by about 30%...My resting pulse right before I was diagnosed was around 56. Now I have trouble getting it below 80! I have posted this before, but my weight went from 213 doown to 198 on SHEER STRESS in the first three weeks. I started taking Xanax .5 twice a day and I am back up to 208.

    Have you called your oncologist and asked him point blank what you can do?

    Good Luck!

    Jeff
  • JimboC
    JimboC Member Posts: 264
    #7
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    ham6789 said:

    I'm back,I think
    hey jumbo, how was the drive home? I'm sorry to hear about the chemotherapy requirement, but I know that you wll beat the disease just as you have so far. thanks for your visit with me @UPMC.
    my experience here in Pittsburgh has been first class. looking forward for my last report card from Dr.Luketich scheduled for Aug,4th
    I am hoping that they will remove all my tubes.
    I will continue to pray for you.......A friend ham6789

    Hey Randy! Drive home was a
    Hey Randy! Drive home was a little rough. I got us out of Pittsburgh then turned it over to Laura. I was wore out by the time I got home. I'm so glad you ar doing well. It was such a pleasure to meet you and your family!
  • JimboC
    JimboC Member Posts: 264
    #8
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    hopper52 said:

    Welcome Back Jimbo
    Jimbo,

    Glad to hear you're doing well. I wanted to ask you, did you lose weight prior to your MIE? I've lost quite a bit since I started Chemo/Radiation. My surgery is still about a month out after my PET and CT scans on Aug 16th. Appears I'll be doing the MIE with Dr Meredith at Moffitt Cancer Center in Tampa. With the weight I've lost already and continuing through the surgery timeframe I'm beginning to get concerned. I've gone from 205 to 165 since my diagnosis on April 4th. Any hints that you've experienced would be appreciated.

    Once again, glad to hear you're doing well

    Michael Daniels (T3N0M0)
    Brandon, Florida

    This may be hard to believe
    This may be hard to believe but I actually gained weight on chemo and leading up to surgery. When you have the surgery, they will more than likely put in a j-tube for feeding so if weight loss becomes too much of an issue, that will help. I still have my j-tube in case chemo causes me eating problems. I can't remember who but someone here had some great tips for packing in extra calories into everything. Now that i think about it, I believe it was Tina if I am not mistaken. Best of luck with the PET/CT and the surgery. I really feel that the MIE is the way to go. I'll be praying for you.
  • sandy1943
    sandy1943 Member Posts: 824
    #9
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    Praying all will go well
    Praying all will go well from here on out. It's so good to get the surgery behind you,
    I tested positive in one lymph node after surgery but had to stop chemo, because of complications. right after the round was started. Even so after three years I'm NED.
    Good luck as you start the chemo,
    Sandra
  • JimboC
    JimboC Member Posts: 264
    #10
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    jojoshort said:

    Great news!
    So glad to see you posting. Isn't it nice that the operation is over and done with? One day at a time. You are amazing.
    Jo-Ann

    Thanks for the warm
    Thanks for the warm thoughts! I wanted to do well to honor everyone who was fighting the battle. Every time I would get discouraged, I would think of everyone, especially my friends here that are stage iv and it gave me strength to keep fighting. Please give Steve all my best.
  • JimboC
    JimboC Member Posts: 264
    #11
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    mruble said:

    Welcome back!
    Glad to hear your recovering is going well. I hope you breeze right through the clean-up chemo!

    Mary

    Thank you so much. I dread
    Thank you so much. I dread the chemo but I'm glad I'm having it. I'm so weak this time around due to the surgery but I can't wait to get started if hat makes any sense.
  • JimboC
    JimboC Member Posts: 264
    #12
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    sandy1943 said:

    Praying all will go well
    Praying all will go well from here on out. It's so good to get the surgery behind you,
    I tested positive in one lymph node after surgery but had to stop chemo, because of complications. right after the round was started. Even so after three years I'm NED.
    Good luck as you start the chemo,
    Sandra

    Thanks Sandy. I'm hoping to
    Thanks Sandy. I'm hoping to be able to complete all 3 rounds. Thank God for NED. I pray for that every day. You had the open procedure didn't you?
  • cher76
    cher76 Member Posts: 292
    #13
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    So glad to hear you are
    So glad to hear you are doing well. Will continue to keep you and your family in my prayers.
    Cheryl
  • annalan
    annalan Member Posts: 138
    #14
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    Hi Jimbo
    Just a few words of
    Hi Jimbo
    Just a few words of encouragement from England. So pleased you are doing well. My husband, Alan, aged 68, diagnosed T3N1M0 Sept 2009, Ivor Lewis op 2010, had 7 cancerous lymph nodes. He made a remarkable recovery, yes he struggled terribly with Chemo and radium after his op and ate small meals but on a regular basis and has now gained 28lb of the 38lb he lost. He has always loved his food and even now manages an 8oz sirloin. Just can't do all the chips or potatoes any more.

    Two weeks ago he has his first CT scan and a couple of days ago we heard those magic words NED. If only everyone could be so blessed. I pray for a cure so one day (soon I hope) everyone can know that feeling.

    Hope you go from strength to strength.
    Ann (2)
  • sammy123
    sammy123 Member Posts: 65
    #15
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    So happy your recovery is
    So happy your recovery is going well. We are up here with Dr. Luketich and his team and I totally agree with you. The surgical team is excellent and quite vigilant with all aspects of care. Keep up the good work and baby steps all the way!!!!!!!
  • mruble
    mruble Member Posts: 174
    #16
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    JimboC said:

    Thank you so much. I dread
    Thank you so much. I dread the chemo but I'm glad I'm having it. I'm so weak this time around due to the surgery but I can't wait to get started if hat makes any sense.

    My husband had clean-up
    My husband had clean-up chemo after his surgery, too. Since he had 11 nodes removed that were positive, I was happy for more chemo and couldn't wait for him to get started either! He had two round of three anticipated and then ended up in the hospital for a couple of weeks. He was on Xeloda instead of 5FU and I attribute his issues to that. I don't think his new little tummy could handle the pills. Take good care of yourself and rest when you need to rest, and hydrate all the time!

    Mary, caregiver to Chad
    diagnosed stage IVa in October 2009
  • JimboC
    JimboC Member Posts: 264
    #17
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    cher76 said:

    So glad to hear you are
    So glad to hear you are doing well. Will continue to keep you and your family in my prayers.
    Cheryl

    Thank you so much Cheryl. I
    Thank you so much Cheryl. I am feeling better every day. I really feel that if I could get this darn feeding tube out, I would make a huge leap forward. Hopefully next week if nothing goes screwy with chemo this week.
  • JimboC
    JimboC Member Posts: 264
    #18
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    annalan said:

    Hi Jimbo
    Just a few words of
    Hi Jimbo
    Just a few words of encouragement from England. So pleased you are doing well. My husband, Alan, aged 68, diagnosed T3N1M0 Sept 2009, Ivor Lewis op 2010, had 7 cancerous lymph nodes. He made a remarkable recovery, yes he struggled terribly with Chemo and radium after his op and ate small meals but on a regular basis and has now gained 28lb of the 38lb he lost. He has always loved his food and even now manages an 8oz sirloin. Just can't do all the chips or potatoes any more.

    Two weeks ago he has his first CT scan and a couple of days ago we heard those magic words NED. If only everyone could be so blessed. I pray for a cure so one day (soon I hope) everyone can know that feeling.

    Hope you go from strength to strength.
    Ann (2)

    Hi Ann! I am so glad to
    Hi Ann! I am so glad to hear that Alan is doing so well. I was a little discourage with I heard I had nodes that tested positive. I start the chemo tomorrow and I so look forward to hearing NED. Take care
  • JimboC
    JimboC Member Posts: 264
    #19
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    sammy123 said:

    So happy your recovery is
    So happy your recovery is going well. We are up here with Dr. Luketich and his team and I totally agree with you. The surgical team is excellent and quite vigilant with all aspects of care. Keep up the good work and baby steps all the way!!!!!!!

    I'm so glad to hear you're
    I'm so glad to hear you're doing well up in Pittsburgh. Everyone up there was super! Good luck on the recovery. Wish I had gotten to meet you all when I was up there.

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