Update on my dad "Seeing Dr.'s at University of Chicago"

casp42
casp42 Member Posts: 79
edited July 2011 in Esophageal Cancer #1
Just wanted to give you an update on my dad age 67, b-day next month. On July 1 diagnosis with EC T3, N2, MO, had PET/CT scan last week, nothing has spread. Port will be put in on Thurs. So, chemo starts on Monday: week 1: cisplatin and 5FU continuousv(portable pump) for 5 days along with radiation Mon-Fri. Week 2-4: radiation M-F, Week 5: cisplatin and 5FU continuous for 5 days along with radiation Mon-Fri. Re-evaluate for surgery 4-6 weeks, and surgery will be sometime in early Oct. Dad’s surgeon doesn’t do MIE.
It seems like it took forever to get to this stage, I realized the hard part is just coming. My dad has Medicare along with supplement insurance, but unfortunately he has never been on meds so he didn’t invest in drug insurance. Any suggestions?

I just pray that his tumor shrinks and that he will be NED!!!
Thanks for listening and please send prayers to my dad!

Carolyn

Comments

  • llamp0922
    llamp0922 Member Posts: 40
    #2
    Hi
    Hi Carolyn,

    Glad to hear that the PET shows no spread. That is good news! I would ask the oncology team if there is a patient advocate or social worker that can help you navigate insurance coverage. EC brings with it a whole host of medications. Cisplatin can cause nausea, which can be treated with medications. Some can be very pricey, so med coverage is your best bet.

    Simultaneous radiation with Cisplatin and 5FU is a common treatment. There have been some recent posts from folks who are doing quite well with it. Hydration is key! Be proactive and schedule hydration before it is needed.

    Stay strong and keep us posted!
    Lisa
  • linda1120
    linda1120 Member Posts: 389
    #3
    Prayers
    You can count on my prayers.

    Linda
  • cindyhils
    cindyhils Member Posts: 27
    #4
    Good Luck
    hello carolyn, It is very good news that it showed it had not spread.. I was diagnosed in august of 09 and had the exact same treatment you just described. I had the THE surgery. I was T2N0M0 and to this day i am doing great. i have been NED since surgery in Dec 09. I agree that you will need some expensive meds. so you will need to find someone to help you through getting help for this. Prayers will be sent to your dad> Cindy
  • casp42
    casp42 Member Posts: 79
    #5
    cindyhils said:

    Good Luck
    hello carolyn, It is very good news that it showed it had not spread.. I was diagnosed in august of 09 and had the exact same treatment you just described. I had the THE surgery. I was T2N0M0 and to this day i am doing great. i have been NED since surgery in Dec 09. I agree that you will need some expensive meds. so you will need to find someone to help you through getting help for this. Prayers will be sent to your dad> Cindy

    Thanks for the..
    Thanks for the positive, prayers and just for helping me get through all of this. I truely appreciate it.

    Carolyn
  • Unknown
    Unknown
    #6
    This comment has been removed by the Moderator
  • casp42
    casp42 Member Posts: 79
    #7
    unknown said:

    This comment has been removed by the Moderator

    Long day..first day of chemo/radiation
    First day of chemo and radiation done, whew….what a long day, I’m sure more of these days to come. Dad was given the cisplatin/5FU and will continue the rest of Week 1 with Combination/ radiation 96-hr. infusion. They gave dad zofran (IV), dehydration and tried to give him a capsule of EMEND but came right up. This past weekend, he is having a hard time keeping anything down. He’s very tired, didn’t sleep much last night.


    My drug costs were all figured in from beginning to end with the diagnosis of Esophageal Cancer. What are you saying? Are you saying you have to pay for the chemo meds? Who can pay for that? I had Medicare, Part A & Part B and Supplemental Anthem BC/BS Medical and Medco Drug Plan. Presently I have switched my drug plan to BC/BS as well. Are you saying that because he didn't purchase the supplemental drug plan that he has to pay for chemo???
    ---------------Any drugs that aren’t IV, he will have to pay out of pocket.------------

    Refresh my memory. Tell me again why Dad isn't going to have the Minimally Invasive Esophagectomy with Dr. Ferguson at the University of Chicago. I switched less than 2 weeks prior to surgery.

    --------- Dad saw Dr. Patti at U of C (he doesn’t do MIE), we left a message for Dr. Ferguson to contact us and of course we are looking at other options.--------------


    William, thanks for listing your side effects. Time to hit the bed

    Carolyn
  • oriontj
    oriontj Member Posts: 375
    #8
    u of c
    My husband had iv hydration on Thursdays and Fridays which was a blessing. He can't have the surgery but has made it two years with the care he has received...Dr. Villafor is his ec oncologist.

    I hope he has smooth sailing with the chemo and radiation.

    jan
  • Frumpy
    Frumpy Member Posts: 6
    #9
    Surgery
    Hi Carolyn, Sorry about your Dad your comments caught my attention because My husband was seeing a Dr. At the University of Chicago who prescribed the treatments he had near our home, and also we met with the surgeon who told us if the treatments were successful he could be a surgical candidate . My husband was stage Three. We had our appointment with him after the surgery at which time he told us he would not be operable as the one area of the near by lymph nodes had enlarged and they gave him about a year.. we were devastated . But would not give up. We went home and my daughters and I spent days gathering up his scans on disks and calling and scheduling appointments . we were able to come up quickly with an appointment at Mayo Clinic which was a blessing the Dr. There told uS that there would be no way to know if the enlargement mention was from inflammation or the cancer until opening him up so that would give him a chance . We went for it it was going to be minimally invasive but that changed during the surgery and he head the big surgery. He got all the cancer, but we realize that there could be microscopic cells left behind and he will need scans every three months but at least there is hope and a chance. With our faith and much prayer were hoping he will beat this. We were not happy that the Surgeon at the University of Chicago was not more communicative with us about his decision and declined doing the surgery when At Mayo we were given plenty of discussion time and told there was no reason to not do the surgery. Hope this is helpful to you. Frumpy
  • Frumpy
    Frumpy Member Posts: 6
    #10
    oriontj said:

    u of c
    My husband had iv hydration on Thursdays and Fridays which was a blessing. He can't have the surgery but has made it two years with the care he has received...Dr. Villafor is his ec oncologist.

    I hope he has smooth sailing with the chemo and radiation.

    jan

    University of Chicag
    what stage is your husband? We also saw Dr. ViLlaflor and were told that my husband was not a surgical candidate, went out to Mayo Clinic they said they saw no reason he would be considered inoperable and Dr. Wiggle did his surgery we were very happy with Mayo Clinic. My husband was stage 3 . Now he has a chance! Frumpy

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