Mayo vs small town

json_2011
json_2011 Member Posts: 100
edited July 2011 in Esophageal Cancer #1
Good morning to all , I truely hope we all have a better weekend and a better next week , but take it just one day at a time is all anybody can do. Mother was staged iv last week. I guess she was thinking the whole time it would be low stage for not feeling any effects? So now the small town clinic is putting a port in next week , and she has appointments with raidiology - which took them awhile to say yes to that with chemo in the real near future. They told me that cistplatan along with the flora - something ? Well anyway looking up the Mayo clinic's regimin seems very different than what these guys were looking at. I just wanted to thank everybody that told me to " yea - go see the people that see this type all the time." I will keep you posted and hopefully mother can get down to Jacksonville asap. Also if and when we get to the Mayo clinic being already haveing her port would they start any kind of therepy ?

Jason

Comments

  • mruble
    mruble Member Posts: 174
    #2
    Sorry to hear about your mother
    Jason -- Stage 4 is a very scary thing for anyone to hear. My husband received the same diagnosis in October 2009. He had endoscopy done locally and we were at Mayo a week later. My advice is to be really proactive and persistent to get into Mayo quickly. Had we waited for Chad's primary care clinic to get him an appointment it would have taken much longer.

    We hand carried all of Chad's medical records and when we got there they put him through two or three days of testing - PET, CT, endoscopic ultrasound and many more things that I can't remember! We met with gastroenterologists and a surgeon there but it would have taken another three weeks to meet with an oncologist and we weren't interested in wasting any time. We returned to our local cancer center with the understanding that the local oncologist would be able to consult with Mayo on a treatment plan. As luck would have it, we ended up with a Mayo-trained oncologist and Chad was receiving chemo two weeks before we would have even seen an oncologist at Mayo.

    Sorry for such a lengthy response! The real take-away messages are -- connect with Mayo yourself and push hard, Mayo does things their own way, and they may not move as quickly as you would like but be persistent! The things that you are learning by being part of this discussion group will give you the knowledge you need to push.

    Best of luck to your mother. She'll be in our prayers.

    Mary
  • casp42
    casp42 Member Posts: 79
    #3
    mruble said:

    Sorry to hear about your mother
    Jason -- Stage 4 is a very scary thing for anyone to hear. My husband received the same diagnosis in October 2009. He had endoscopy done locally and we were at Mayo a week later. My advice is to be really proactive and persistent to get into Mayo quickly. Had we waited for Chad's primary care clinic to get him an appointment it would have taken much longer.

    We hand carried all of Chad's medical records and when we got there they put him through two or three days of testing - PET, CT, endoscopic ultrasound and many more things that I can't remember! We met with gastroenterologists and a surgeon there but it would have taken another three weeks to meet with an oncologist and we weren't interested in wasting any time. We returned to our local cancer center with the understanding that the local oncologist would be able to consult with Mayo on a treatment plan. As luck would have it, we ended up with a Mayo-trained oncologist and Chad was receiving chemo two weeks before we would have even seen an oncologist at Mayo.

    Sorry for such a lengthy response! The real take-away messages are -- connect with Mayo yourself and push hard, Mayo does things their own way, and they may not move as quickly as you would like but be persistent! The things that you are learning by being part of this discussion group will give you the knowledge you need to push.

    Best of luck to your mother. She'll be in our prayers.

    Mary

    Jason
    Jason,

    My dad starts on Monday, continuous for 5 days straight cisiplatin and 5FU, along with radiation. He is stage III and is being seen at Univ. Of Chgo.

    Carolyn
  • Unknown
    Unknown
    #4
    This comment has been removed by the Moderator
  • json_2011
    json_2011 Member Posts: 100
    #5
    mruble said:

    Sorry to hear about your mother
    Jason -- Stage 4 is a very scary thing for anyone to hear. My husband received the same diagnosis in October 2009. He had endoscopy done locally and we were at Mayo a week later. My advice is to be really proactive and persistent to get into Mayo quickly. Had we waited for Chad's primary care clinic to get him an appointment it would have taken much longer.

    We hand carried all of Chad's medical records and when we got there they put him through two or three days of testing - PET, CT, endoscopic ultrasound and many more things that I can't remember! We met with gastroenterologists and a surgeon there but it would have taken another three weeks to meet with an oncologist and we weren't interested in wasting any time. We returned to our local cancer center with the understanding that the local oncologist would be able to consult with Mayo on a treatment plan. As luck would have it, we ended up with a Mayo-trained oncologist and Chad was receiving chemo two weeks before we would have even seen an oncologist at Mayo.

    Sorry for such a lengthy response! The real take-away messages are -- connect with Mayo yourself and push hard, Mayo does things their own way, and they may not move as quickly as you would like but be persistent! The things that you are learning by being part of this discussion group will give you the knowledge you need to push.

    Best of luck to your mother. She'll be in our prayers.

    Mary

    thanks Mary !!
    Well now we are running into insurance problems as mom was let go about 2 years ago. It seems we have to waite on this medicaide thing to pull through! The dr. got hold of the Moffit Cancer center qnd are waiting a phone call??? Seems as though time is going too slow now!
  • json_2011
    json_2011 Member Posts: 100
    #6
    unknown said:

    This comment has been removed by the Moderator

    again thankyou
    I will look up the drugs . my Fiance` went through cystplattin and 2 other drugs for endometrial cancer , so no stranger to this , just scared for her . Again thankyou & will talk with you again very soon i hope William.


    Jason
  • Frumpy
    Frumpy Member Posts: 6
    #7
    casp42 said:

    Jason
    Jason,

    My dad starts on Monday, continuous for 5 days straight cisiplatin and 5FU, along with radiation. He is stage III and is being seen at Univ. Of Chgo.

    Carolyn

    university of Chicago
    Jason, my husband was being seen by a Dr. At the University who recommended the treatment protocol that our oncologist near our home followed , we also met with a surgeon from the university. That told us after treatment he could do. Surgery that could possibly be a cure.After the treatments we met with him and he said hoe would not do the surgery as the tumor enlarged ect. And they gave him a year to live. We got in touch with Mayo had an appointment within a week met with Dr. Wigle who we loved . He told us there was no way of knowing if this enlargement was inflammation or more cancer until opening him up and that he saw no reason hen would not do the surgery. Thank God for Mayo and Dr. Wigle now my husband at least has as chance to beat this . Mayo is a treat place we were very happy about everything there. Frumpy

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