reluctant new member

foxhd
foxhd Member Posts: 3,181 Member
in Kidney Cancer #1
Well, I guess it is better to see the group get bigger than to get smaller. Add me to the list. First of all, this is an excellent and supportive site. Glad I found all of you. Thanks...I thought I had a kidney stone in march. Tremendous pain and hematuria both in one night. But no. Cat scan showed stage 3 tumor. Had an incisional nephrectomy a couple days later. I have dealt with it fine. Also had a quick recovery. I'm a physical therapist. Wife and daughter are nurses. I'm sure that helped alot. Exercising, jogging and golfing in a month. Blew all my doctors away. My surgeon told me that," For the rest of my life, I will never forget how well you did." A month later had a negative pet scan. But 2 weeks ago, a follow up cat scan revealed mets to lungs and lymph nodes. Was never on any meds... So tomorrow I will see a different oncologist and then another next week. I will be pushing for Interleukin 2. I think I am an ideal candidate. I hope they agree. I'm in central connecticut and Il-2 is only done at Yale New Haven or in Boston. I did go to a consult at Dana Farber back in April and am not enthused about going back. They discussed a clinical trial of pazobanib and wanted the pet scan. Then they NEVER called me back. I had to get the results from my local oncologist. Weird... Funny thing is that I feel great! I weight train 4-6 x week. I jog 3 miles every other day and have been doing so for years. I'll see how my consults go. By the way, I'm 59.

Comments

  • lbinmsp
    lbinmsp Member Posts: 266
    #2
    Welcome
    but sorry you had to join this little club. You sound amazing, though. Great attitude and a good support team right in your own home. You've already won one battle - we'll pray for yet another one! Good luck - God bless - and keep us informed.
  • donna_lee
    donna_lee Member Posts: 1,045 Member
    #3
    lbinmsp said:

    Welcome
    but sorry you had to join this little club. You sound amazing, though. Great attitude and a good support team right in your own home. You've already won one battle - we'll pray for yet another one! Good luck - God bless - and keep us informed.

    IL2
    I have a friend in the Cancer Support Group who had 3 of the IL2 treatments 2 years ago. They are toxic, and the Dr. had to stop the series. But, the tumors that were in her lungs did shrink and have not enlarged for over 2 years.
    She had a nephrectomy, followed by spread to lung-then a lobe-ectomy, and the following year-small tumors in other lobes. That's when she went on the IL2.
    She still drives around, helps care for debilitated spouse, goes fishing with her grandson, travels to weekend concerts and lives with gusto.

    Sooooo, keep on doing what you like and can do. The cancer is a bump in the road.
    donna_lee
  • foxhd
    foxhd Member Posts: 3,181 Member
    #4
    donna_lee said:

    IL2
    I have a friend in the Cancer Support Group who had 3 of the IL2 treatments 2 years ago. They are toxic, and the Dr. had to stop the series. But, the tumors that were in her lungs did shrink and have not enlarged for over 2 years.
    She had a nephrectomy, followed by spread to lung-then a lobe-ectomy, and the following year-small tumors in other lobes. That's when she went on the IL2.
    She still drives around, helps care for debilitated spouse, goes fishing with her grandson, travels to weekend concerts and lives with gusto.

    Sooooo, keep on doing what you like and can do. The cancer is a bump in the road.
    donna_lee

    Thanx for the support. Just
    Thanx for the support. Just came back from second consult. Top Md in Hartford thinks I'm an ideal candidate for Il 2. Now to Yale next week . Hope they will admit me for treatment. I want to beat this thing!!!
  • Minnesota Girl
    Minnesota Girl Member Posts: 119
    #5
    foxhd said:

    Thanx for the support. Just
    Thanx for the support. Just came back from second consult. Top Md in Hartford thinks I'm an ideal candidate for Il 2. Now to Yale next week . Hope they will admit me for treatment. I want to beat this thing!!!

    Best of luck
    Sounds like you have a great attitude and are in good health. I wish you the best on your trip to Yale!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #6
    Minnesota Girl said:

    Best of luck
    Sounds like you have a great attitude and are in good health. I wish you the best on your trip to Yale!

    thanx all, just got power back
    Thanx all. Lost all power, internet and phones for 7 days after storm hit Connecticut. Back tonight...Had great visit to Yale. Others may want to read this carefully. I went to Yale pushing my acceptance for Il-2. My Oncologist gave me a counter proposal. They are doing a clinical study for RCC with mets. It has to do with blocking the molecule that triggers the T-cell die off when it no longer identifies the tumor cells as invasive. This allows continued immune destruction of the tumor.- that is paraphrased- but close. They are getting about a 35 % response of recovery in a short time. Out patient, IV, biopsies and scans. Infusion every 3 weeks. Much less toxicity than Il-2...Very promising. I'll get more details on monday 11/7. Funding is by, Bristol myers squib.protocol CA209-009.
  • garym
    garym Member Posts: 1,647
    #7
    foxhd said:

    thanx all, just got power back
    Thanx all. Lost all power, internet and phones for 7 days after storm hit Connecticut. Back tonight...Had great visit to Yale. Others may want to read this carefully. I went to Yale pushing my acceptance for Il-2. My Oncologist gave me a counter proposal. They are doing a clinical study for RCC with mets. It has to do with blocking the molecule that triggers the T-cell die off when it no longer identifies the tumor cells as invasive. This allows continued immune destruction of the tumor.- that is paraphrased- but close. They are getting about a 35 % response of recovery in a short time. Out patient, IV, biopsies and scans. Infusion every 3 weeks. Much less toxicity than Il-2...Very promising. I'll get more details on monday 11/7. Funding is by, Bristol myers squib.protocol CA209-009.

    Bristol myers squib.protocol CA209-009...
    Hi foxhd,

    I hope one day something like this will come along and make this group smaller in a positive way. Important keys in this battle are a positive attitude and a solid team working with you at home and on the outside, it appears you have both. Hang in there and stay on the attack.

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #8
    garym said:

    Bristol myers squib.protocol CA209-009...
    Hi foxhd,

    I hope one day something like this will come along and make this group smaller in a positive way. Important keys in this battle are a positive attitude and a solid team working with you at home and on the outside, it appears you have both. Hang in there and stay on the attack.

    Gary

    MDX-1106
    I believe the drug is MDX-1106. Hopefully I'll hear today regarding having a biopsy and pet scan. Blood work should be OK. Hope they accept me.
  • selissa
    selissa Member Posts: 4
    #9
    foxhd said:

    MDX-1106
    I believe the drug is MDX-1106. Hopefully I'll hear today regarding having a biopsy and pet scan. Blood work should be OK. Hope they accept me.

    MDX-1106
    Hi,

    My father's oncologist says that he might be a candidate for MDX-1106 trial. Did you get accepted into a trial? Do you have any more info about this drug?

    Thanks!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #10
    selissa said:

    MDX-1106
    Hi,

    My father's oncologist says that he might be a candidate for MDX-1106 trial. Did you get accepted into a trial? Do you have any more info about this drug?

    Thanks!

    MDX-1106
    I have a dual phase pet scan on monday the 28th, then a biopsy on the 30th. Assuming that I remain a candidate, infusions should start within a few days after. The protocol for the study is specific re: all the scheduling. You can google MDX 1106 for more info, including listings of where the trials are taking place. There aren't that many. I think that I found one site that stated that only about 80 people would be in this phase 1b study. Also that it may be pushed for quicker FDA approval due to its effectiveness and minimal side effects. Good luck to your dad.
  • garym
    garym Member Posts: 1,647
    #11
    foxhd said:

    MDX-1106
    I have a dual phase pet scan on monday the 28th, then a biopsy on the 30th. Assuming that I remain a candidate, infusions should start within a few days after. The protocol for the study is specific re: all the scheduling. You can google MDX 1106 for more info, including listings of where the trials are taking place. There aren't that many. I think that I found one site that stated that only about 80 people would be in this phase 1b study. Also that it may be pushed for quicker FDA approval due to its effectiveness and minimal side effects. Good luck to your dad.

    Pet scan...
    Hey foxy,

    How did the scan go yesterday?

    Hope everything is still on track,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #12
    garym said:

    Pet scan...
    Hey foxy,

    How did the scan go yesterday?

    Hope everything is still on track,

    Gary

    scan
    Hey Gary, You got my#. I go by Foxy. Even by my wife. Pet scans I'll assume were fine. Biopsy tomorrow and tentative infusion 12/5. I am pumped. Poor wife is juggling work, parents with dementia, our granddaughters back and forth to school, and my trips to Yale. Not to mention everything else a dedicated wife does. It is so much harder on her. Man she is tough...A case manager that my insurance has contracted with , from another company, is being a pia. Despite being a clinical study, she wants to throw in some regulations even through insurance doesn't have to pay. What ever....The important thing is how I respond to the infusion of the MDX-1106!!!!CAN"T wait!
  • foxhd
    foxhd Member Posts: 3,181 Member
    #13
    garym said:

    Pet scan...
    Hey foxy,

    How did the scan go yesterday?

    Hope everything is still on track,

    Gary

    scan
    Hey Gary, You got my#. I go by Foxy. Even by my wife. Pet scans I'll assume were fine. Biopsy tomorrow and tentative infusion 12/5. I am pumped. Poor wife is juggling work, parents with dementia, our granddaughters back and forth to school, and my trips to Yale. Not to mention everything else a dedicated wife does. It is so much harder on her. Man she is tough...A case manager that my insurance has contracted with , from another company, is being a pia. Despite being a clinical study, she wants to throw in some regulations even through insurance doesn't have to pay. What ever....The important thing is how I respond to the infusion of the MDX-1106!!!!CAN"T wait!
  • garym
    garym Member Posts: 1,647
    #14
    foxhd said:

    scan
    Hey Gary, You got my#. I go by Foxy. Even by my wife. Pet scans I'll assume were fine. Biopsy tomorrow and tentative infusion 12/5. I am pumped. Poor wife is juggling work, parents with dementia, our granddaughters back and forth to school, and my trips to Yale. Not to mention everything else a dedicated wife does. It is so much harder on her. Man she is tough...A case manager that my insurance has contracted with , from another company, is being a pia. Despite being a clinical study, she wants to throw in some regulations even through insurance doesn't have to pay. What ever....The important thing is how I respond to the infusion of the MDX-1106!!!!CAN"T wait!

    Tomorrow...
    Foxy, I love your spirit!!! Good to hear everything is proceeding as planned, I'm pulling for you man. You are right about the wives, if they are the weaker sex then what does that make us?

    Rock on,

    Gary
  • foxhd
    foxhd Member Posts: 3,181 Member
    #15
    garym said:

    Tomorrow...
    Foxy, I love your spirit!!! Good to hear everything is proceeding as planned, I'm pulling for you man. You are right about the wives, if they are the weaker sex then what does that make us?

    Rock on,

    Gary

    biopsy
    Just returned from Yale and lung biopsy. There was nothing to it. I don't feel a thing. But I am drowsy. Nothing but good experiences from everyone at Yale. Regardless the outcome, I'm very pleased to be under their care. Infusion next week! Can't wait!!

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