To anyone who has Pittsburgh Penn/Dr. Luketich as an option, but is afraid to step out of the box...

Options
DanaM
DanaM Member Posts: 29
(This post tells my story and makes reference to the Lord, God Almighty-if you are offended by the mention of Him or His sovereignty-please make a choice now regarding whether or not you want to continue reading. I cannot say what I have to say without including Him)

My name is Dana. My husband, Billy, had a terrible pain in the upper right quadrant of his abdomen, which no one could explain. We started in the emergency room at our local hospital in Maryland. They were able to conduct sonograms which showed no liver enlargement, gall stones or any other abnormalities. We went to our GI doctor, who had previously diagnosed him with Barrets and saw it was still ongoing, at which time he took a few biopsies.

The doctor was perplexed because he didn't see anything that could cause the kind of pain my husband was in. He ordered a PET scan-we had that done and the results were negative for cancer. He did find high-grade dysplasia which was explained to us as a pre-cancerous condition. Our GI doc immediately referred us to a surgeon with little experience in this procedure. I did some research and found a doctor at the University of Maryland who was using a technique called cryoablation therapy, where they use liquid nitrogen to burn away the dysplasic cells in the esophagus and allow new cells to regrow. They typically repeat this procedure several times and watch you like a hawk for any developing cancer. He did say that if he found anything-he would be removing any lesion and we would have to return for the actual procedure if that was done.

Devastation Day-He called and informed us that he found cancer. My husband waited 2 days before he told me. He said I was sleeping after work and didn't want to wake me. I was crushed beyond crushed. I'm sure many people who are reading this have had this experience.. standing with a loved one-crying, overwhelmed, feeling numb despair. The only other moment that really couldn't compare with this was 9/11. I remember everything about that day and this one had an impact on me that there are really no words for. We've been married over twenty years and have been best friends since the day we met.

When the cancer was found, his pain dissappeared. I fully believe and give credit and all the glory to the Lord because I believe that it was His way of calling attention to the problem. After I basically got up from the floor, I began to strategize. We saw the Division Chief of Thoracic surgery at a prominent hospital in Maryland. He explained that my husband would need to be cut open like a fish, breaking a rib and making a huge thoracic side incision and a midline incision as well. He told us he likes to handle the organs because he felt it gave him more control during the procedure. He would be hospitalized for 14 days at a minmum and wouldn't be feeling "himself" until about 3 months later.

We were scared and devastated. My husband is an insulin dependant diabetic who has trouble healing sometimes, and the thought of these severe incisions frightened me. I don't remember what I typed in on Google, but a posting by the Marshalls popped up. I was looking for another way and the good Lord made it for me. They were kind and gracious enough to talk to me and inform me of the (MIE) Minimally Invasive Esophagectomy performed by Dr. Luketich in Pittsburgh. We live in Maryland and Pittsburgh is about 5 hours away but at first my husband was resistant to it. I have to admit, it made me nervous.

My family consists of my mom and dad, & my husband and me. My dad has Parkinsons and I don't want my mom to leave him and we have animals that need caring for...a crazy Husky (Maya-aka the Meister) and an overweight rescued cat named Buster aka Meatball. So my mom and dad will be watching the house and the animals because they only live 3 blocks away.

So I sat-thinking I am already overwhelmed-do I want to take this on? or go to the local University hospital and just get through this? My support network is here and I don't have alot of leave time at work because of my own medical issues.

I will do whatever I have to do-stepping far outside of our comfort zone to take the 7 bandaid cuts versus being filleted like a fish. I will take a doctor who has performed over a thousand of these procedures versus one who has done 235.

In my humble opinion, I believe Mr. Marshall was given EC by the Lord, so that he could light the way for others. So that he could lead people to a doctor who performed this procedure in a humane way that is much safer. Mr. Marshall & his wife, my other mom and dad, have been generous with their encouragement and time, as they are with many others who come to this forum for help, spend alot of time sharing their experience, strength and hope with others. They've done alot of research on EC, Mr. Marshall is living proof that this procedure can be done successfully with a minimal amount of recovery in comparison with the open thoracic surgeries. I'm not demeaning those doctors who perform these surgies this way, and on occasion they must be done this way.

But if you have a choice and Pittsburgh is an option for you; I'm urging you to step out of your comfort zone and take advantage of the MIE. I'd like to take this opportunity to thank my other mom and dad (Mr. Marshall & Mrs. Loretta)for their endless assistance to myself and others in their time of need. Truly, servants of the Lord and upstanding in His sight. I want to thank everyone else-even those I haven't personally talked to and hope to get to know for sharing, for encouraging others. I know the Lord ordered my steps to this forum. He offered me another way through the guidance of the Marshalls and we too are on our way to Pittsburgh. And honestly, if I lived in Texas-I would still be making my way there. We see Dr. Luketick on April 26 and surgery is on April 27th. Step out, step out in faith, there is another option. Keep us in your prayers, and know that when I read your posts, even though we may not have directly communicated, prayers for all of you are going up as a memorial to His throneroom for healing and peace like a river for all of you who are suffering with this disease, for the survivors for their continued health, and for the caregivers or others suffering a loss. (Susie & Brendon-if you're reading this, I look forward to the possibility of meeting you both and some real-time hugs)
May God Bless you All.

Comments

  • sandy1943
    sandy1943 Member Posts: 824
    Options
    God Is Good.I beleive like
    God Is Good.I beleive like you, Your husbands unexplained pain was God's way of getting your attention. I had the ivor lewis surgery three years ago. I wish I had found this site before then, So the Marshalls could have told me about the MIE. I did well,but if there is a better way, then why not do it. I'm glad this site is here ,so others facing EC can become better educated.
    Will be praying for you, Billy, Susie and Brendon as ya'll make your way to Pittsburgh,
    Sandra
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
    Options
    Of course I'm reading this....
    ....and should I mention tearing up in the process...I'm so emotional everyday and your kind words to the Marshalls choked me up. I fully believe everything happens for a reason and it was just earlier today that I commented on someone else's thread, that William in an Angel in Disguise.

    Real time hugs would be great. It would be wonderful to meet you, but I pray that Billy has such a terrific recovery, that you both will be relaxing at home, drinking lemonade, as we head (12 hours) to our visit with Dr. Luketich.

    Dana and Billy, prayers to you both as you continue to fight this beast. I will thinking of you both and how close our journey is to one another.

    I agree with everything you have said about the Marshalls!! (Billy's surgery isn't scheduled on a Friday, is it?!? lol --- that comment is for William himself!)
  • Susie_Brendon
    Susie_Brendon Member Posts: 128
    Options
    sandy1943 said:

    God Is Good.I beleive like
    God Is Good.I beleive like you, Your husbands unexplained pain was God's way of getting your attention. I had the ivor lewis surgery three years ago. I wish I had found this site before then, So the Marshalls could have told me about the MIE. I did well,but if there is a better way, then why not do it. I'm glad this site is here ,so others facing EC can become better educated.
    Will be praying for you, Billy, Susie and Brendon as ya'll make your way to Pittsburgh,
    Sandra

    Wouldn't know half of what I do without this site...
    ...and this new family.

    Thank you for the prayers Sandra! Hope you are having a great day today!
  • unclaw2002
    unclaw2002 Member Posts: 599
    Options
    Dana,You may know that I
    Dana,

    You may know that I brought my parents from New Orleans, to UPMC, to be treated by Dr. Gibson - the Oncologist on Dr. Luketich's team. (I live in Delaware 5 hours away as well).

    My dad just had his second chemo treatment in Pittsburgh. They are staying at the Family House right down the Street from Hillman. Some history for those new on the site -- My dad was originally diagnosed as Stage III, T3,N1,MO in Dec of 2009 and then the cancer progressed to Stage IVb by July of 2010 before he could have surgery (He had mutliple hospitalizations related to stent problems and issues). So many chemo treatments later, Taxol and Carboplatin, radiation, 5FU and Xeloda ---- none of which stopped the cancer my dad tried a clinical trial at MD Anderson. He got the placebo and we were out of options and clinical trials. The one drug combination that seemed to hold promise, a combination of Irinotican and Erbitux, was denied by Medicare because Erbitux is off-label and not FDA approved for Esophageal Cancer. So everyone gave up - the doctor at MD Anderson and his doctor in New Orleans ---- the doctor at Sloan had given up in October and told my dad to go home and enjoy the time he had left.

    Fast forward the lawyer in me thought that I should do something to recitify this injustice so I began by calling the NIH and tried to find out what I could do about unblinding a clinical trial, getting compassionate prescriptions, getting donations or an individual clinical trial. The kind person at the NIH directed me to some websites I found some others and I assembled the information and options to get FDA approval . . . a daunting task yes but when MD Anderson told me I would need an act of Congress I thought that sounds like a challenge and I do come from a small state and I do happen to know the Vice President ... so those were fighting words.

    But then here is the true miracle --- a kind human being and a doctor committed to doing what he can for patients suffering from Esophageal Cancer. Yes, Dr. Michael Gibson --- so first we tried to see if we could be either Imclone or Amgen to provide the drug to my dad for free but didn't get anywhere. Then I broached the subject of trying to do an individualized clinical trial (to mirror the trial my dad couldn't participate in because we couldn't get the Imclone clinical trial results unblinded to confirm he received the placebo) and you know what Dr. Gibson applied for and got an individualized clinical trial approved for my dad so he could receive the experimental treatment and Medicare would pay for it because it was FDA approved. Now this took some time, and yes we know it is a long shot but for patients who have not responded to traditional chemotherapy and who have stage IV disease this drug combination has appeared to provide the most promising results in extending life, and maintaining a quality of life.

    You have to love Dr. Gibson, he looked at my dad and said we will see if this works, it might not, but when it is time I don't want to have to pry the chemo out of your hands. If your life is spent in the hospital and sick then that isn't a quality of life for you to have. But right now we will fight and we will fight to keep you out of the hospital and have the cancer respond and stop growing and not spread anymore. Today for his second treatment because my dad seemed overly tired he reduced one of the chemo agents by 25% to see if that makes a difference. We will see over the next two days. But he also brought in a pain management person to discuss some issues my dad was having, brought the nutritionist back in to talk to him about ways to deal with his dry heaves and nausea and they gave him extra fluids and potassium. The staff is incredible, returns calls, uses email and takes all the time you need.

    So I agree - my 81 year old mother and 79 year old father did not want to travel to Pittsburg at all - even said they wouldn't go even if I got my dad the drug. But you know what they are there now and it is really outside of their comfort zone but I am thankful every day that they are being taken care of by the talented and caring folks there at UPMC.

    My dad will be in Pittsburg for the next 6 to 8 weeks.

    Dana - I think I may be at the family house when you get to Pittsburg. Send me a personal email through CSN and we can try and connect I will give you my contact information. My dad gets chemo every Wed. and I think I may be in town when you have the surgery.

    Look forward to meeting you,

    Best - Cindy
  • mrsbotch
    mrsbotch Member Posts: 349
    Options

    Dana,You may know that I
    Dana,

    You may know that I brought my parents from New Orleans, to UPMC, to be treated by Dr. Gibson - the Oncologist on Dr. Luketich's team. (I live in Delaware 5 hours away as well).

    My dad just had his second chemo treatment in Pittsburgh. They are staying at the Family House right down the Street from Hillman. Some history for those new on the site -- My dad was originally diagnosed as Stage III, T3,N1,MO in Dec of 2009 and then the cancer progressed to Stage IVb by July of 2010 before he could have surgery (He had mutliple hospitalizations related to stent problems and issues). So many chemo treatments later, Taxol and Carboplatin, radiation, 5FU and Xeloda ---- none of which stopped the cancer my dad tried a clinical trial at MD Anderson. He got the placebo and we were out of options and clinical trials. The one drug combination that seemed to hold promise, a combination of Irinotican and Erbitux, was denied by Medicare because Erbitux is off-label and not FDA approved for Esophageal Cancer. So everyone gave up - the doctor at MD Anderson and his doctor in New Orleans ---- the doctor at Sloan had given up in October and told my dad to go home and enjoy the time he had left.

    Fast forward the lawyer in me thought that I should do something to recitify this injustice so I began by calling the NIH and tried to find out what I could do about unblinding a clinical trial, getting compassionate prescriptions, getting donations or an individual clinical trial. The kind person at the NIH directed me to some websites I found some others and I assembled the information and options to get FDA approval . . . a daunting task yes but when MD Anderson told me I would need an act of Congress I thought that sounds like a challenge and I do come from a small state and I do happen to know the Vice President ... so those were fighting words.

    But then here is the true miracle --- a kind human being and a doctor committed to doing what he can for patients suffering from Esophageal Cancer. Yes, Dr. Michael Gibson --- so first we tried to see if we could be either Imclone or Amgen to provide the drug to my dad for free but didn't get anywhere. Then I broached the subject of trying to do an individualized clinical trial (to mirror the trial my dad couldn't participate in because we couldn't get the Imclone clinical trial results unblinded to confirm he received the placebo) and you know what Dr. Gibson applied for and got an individualized clinical trial approved for my dad so he could receive the experimental treatment and Medicare would pay for it because it was FDA approved. Now this took some time, and yes we know it is a long shot but for patients who have not responded to traditional chemotherapy and who have stage IV disease this drug combination has appeared to provide the most promising results in extending life, and maintaining a quality of life.

    You have to love Dr. Gibson, he looked at my dad and said we will see if this works, it might not, but when it is time I don't want to have to pry the chemo out of your hands. If your life is spent in the hospital and sick then that isn't a quality of life for you to have. But right now we will fight and we will fight to keep you out of the hospital and have the cancer respond and stop growing and not spread anymore. Today for his second treatment because my dad seemed overly tired he reduced one of the chemo agents by 25% to see if that makes a difference. We will see over the next two days. But he also brought in a pain management person to discuss some issues my dad was having, brought the nutritionist back in to talk to him about ways to deal with his dry heaves and nausea and they gave him extra fluids and potassium. The staff is incredible, returns calls, uses email and takes all the time you need.

    So I agree - my 81 year old mother and 79 year old father did not want to travel to Pittsburg at all - even said they wouldn't go even if I got my dad the drug. But you know what they are there now and it is really outside of their comfort zone but I am thankful every day that they are being taken care of by the talented and caring folks there at UPMC.

    My dad will be in Pittsburg for the next 6 to 8 weeks.

    Dana - I think I may be at the family house when you get to Pittsburg. Send me a personal email through CSN and we can try and connect I will give you my contact information. My dad gets chemo every Wed. and I think I may be in town when you have the surgery.

    Look forward to meeting you,

    Best - Cindy

    Hi Cindy
    I am so glad that your dad is in Pittsburg. I only wish that Vince had been able to go. I know what a lovely man Dr. Gibson is as he spoke to me on the phone and we e-mailed back and forth. I would certainly recommend him and UPMC for any procedure.

    The screening you were talking about in the 3 centers sounds fantastic. There should be one at every major cancer center so people could go to them. An endoscopy should be mandatory for everyone. who has any issues at all.


    Please give me a call and tell Dr. Gibson I say hello.


    Barb