full plate over the next few weeks. UPDATE!!!!!!!!!!!

2

Comments

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #22
    danker said:

    tests

    Hope all the tests show how to become NED!!! Good Luck!

    That's the plan and I am

    That's the plan and I am still fighting for surgery as well.

  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #23
    janderson1964 said:

    I just found out that Dr.

    I just found out that Dr. Choti a reknowned liver surgeon that I met at a conference from Johns Hopkins is now at UT Southwestern in Dallas. I am taking a long shot here but I have requested an appointment for him while I am in Houston. We'll see what happens.

    maybe i'll see you here at UTSW

    good luck, jeff......

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #24
    Sundanceh said:

    maybe i'll see you here at UTSW

    good luck, jeff......

    I will be there for a week. I

    I will be there for a week. I could send you my schedule if you are up to a visit.

  • herdizziness
    herdizziness Member Posts: 3,624 Member
    #25
    janderson1964 said:

    That's the plan and I am

    That's the plan and I am still fighting for surgery as well.

    Hey Jeff

    First thanks for thinking of me, second, DANG that is a full plate.

    Glad you are keeping us updated, and hoping with all those appts., you find something that is extremely successful!!!

    Enjoy that biking, I miss my kayaking and hope to get back to it soon.

    hugs, 

    Winter Marie

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #26
    herdizziness said:

    Hey Jeff

    First thanks for thinking of me, second, DANG that is a full plate.

    Glad you are keeping us updated, and hoping with all those appts., you find something that is extremely successful!!!

    Enjoy that biking, I miss my kayaking and hope to get back to it soon.

    hugs, 

    Winter Marie

     

    Thanks marie. It is good to

    Thanks marie. It is good to hear from you. Use your kayaking as motivation. Mountain biking used to be for fitness and fun but now that and motorcycle riding I use as motivation to recover faster from each treatment. It's been several months since I kayaked. I miss it but just can't find the time.

  • Momof2plusteentwins
    Momof2plusteentwins Member Posts: 509 Member
    #27
    Jeff

    Have a good flight tomorrow.  Hope you have success with all your appointments.  We will be thinking about you !

    Sandy

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #28
    Update 10/10/14.
    I got the

    Update 10/10/14.

    I got the genetic test back. It revealed 12 mutations 8 of which they matched to 13 trials or off label drugs. I had my scan this past Tuesday and am scheduled to review with my oncologist next week. But first off to MD Anderson. I went to the clinic today. Thay already obtained my records and I faxed them the genetic test results and past scan reports from 2014. I picked up the disc from my local hospital yesturday from my scan on tuesday and hand delivered it today to MD Anderson still not knowing the results myself.

    First I must say that I was blown away by the cancer center and the whole Texas medical center as a whole. It was a whole city within itself. Everyone from the receptionist to the nurses, lab techs, and doctors were so friendly and smiling and the hospital wa so well organized and clean. I have been to several cancer centers and hospital all over the country and they all pale in comparison.

    Anyway back to the story. I met with Dr. Subbiahs fellow first for a physical and to go through my history one more time in person. He said Dr. subbiah already had a trial for tageted therapy in mind for me based on the genetic test but first they wanted to know about my most recent san to see if a trial should be done at this point. I told him that I brought the disc and the nurse uploaded it into thier system but he felt it was better to have a consult with my oncologist. So he called my oncologist and to y surprise wa able to get him on the phone right away. They discussed the results which I almost didn't want to know because if it wa bad it would be really hard to tell my wife who is still back in Virginia and by herself until I get home. Anywas it turns out that my liver tumor shrunk 1.5cm in the past  months for a total of 2.5cm since I had y90 done and the chestwall spots had ery little change so they all agreed that I am still STALE and should stay the course of treatment for now while I am still responding. So no trials for now. But I am going to badger my liver surgeon again and I have a couple other cowboy type surggeons that I have been in contact with before this most recent news.

    I also got a response from the state health department regarding my appeal  for insurance coverage for SBRT. They are looking for a more detailed response from me. So I laid it on them thick. I told them that I have seen 2 oncologist, 4 radiation oncologist, and 3 interventional radiologist from 6 different hospitals from Virginia to Seattle who ALL recommended SBRT for the chestwall spots. I listed all of the hospitals for them. So it is wait and see again on that.

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #29
    janderson1964 said:

    Update 10/10/14.
    I got the

    Update 10/10/14.

    I got the genetic test back. It revealed 12 mutations 8 of which they matched to 13 trials or off label drugs. I had my scan this past Tuesday and am scheduled to review with my oncologist next week. But first off to MD Anderson. I went to the clinic today. Thay already obtained my records and I faxed them the genetic test results and past scan reports from 2014. I picked up the disc from my local hospital yesturday from my scan on tuesday and hand delivered it today to MD Anderson still not knowing the results myself.

    First I must say that I was blown away by the cancer center and the whole Texas medical center as a whole. It was a whole city within itself. Everyone from the receptionist to the nurses, lab techs, and doctors were so friendly and smiling and the hospital wa so well organized and clean. I have been to several cancer centers and hospital all over the country and they all pale in comparison.

    Anyway back to the story. I met with Dr. Subbiahs fellow first for a physical and to go through my history one more time in person. He said Dr. subbiah already had a trial for tageted therapy in mind for me based on the genetic test but first they wanted to know about my most recent san to see if a trial should be done at this point. I told him that I brought the disc and the nurse uploaded it into thier system but he felt it was better to have a consult with my oncologist. So he called my oncologist and to y surprise wa able to get him on the phone right away. They discussed the results which I almost didn't want to know because if it wa bad it would be really hard to tell my wife who is still back in Virginia and by herself until I get home. Anywas it turns out that my liver tumor shrunk 1.5cm in the past  months for a total of 2.5cm since I had y90 done and the chestwall spots had ery little change so they all agreed that I am still STALE and should stay the course of treatment for now while I am still responding. So no trials for now. But I am going to badger my liver surgeon again and I have a couple other cowboy type surggeons that I have been in contact with before this most recent news.

    I also got a response from the state health department regarding my appeal  for insurance coverage for SBRT. They are looking for a more detailed response from me. So I laid it on them thick. I told them that I have seen 2 oncologist, 4 radiation oncologist, and 3 interventional radiologist from 6 different hospitals from Virginia to Seattle who ALL recommended SBRT for the chestwall spots. I listed all of the hospitals for them. So it is wait and see again on that.

    Moving along

    it is good to hear from you, and really good to know that you were impressed with the facilities down in Texas. 

    Great news about the liver met.

    I hope you continue to be treated well by the specialists, and here's hoping your latest response will work with the insurance. 

    Best wishes from England. Sue - Trubrit

  • Easyflip
    Easyflip Member Posts: 588 Member
    #30
    Hey Jeff

    Great to hear from you! Wow MD Anderson sounds like the Emereld City of cancer centers! Sounds like you're in good hands, let's hope the powerful Oz there has the answers you seek! Great news on the stale cancer. That's a funny description, here's to continued staleness! The whole SRBT thing is ridiculous. Their master plan is to give you so many hoops to jump through you trip on one and die from head trauma! Just kidding, you hit some arbitrary dollar amount and there is some accountant over there getting paid to stall you forever- don't let them! Good luck and keep us posted!

    Easyflip/Richard

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #31
    Easyflip said:

    Hey Jeff

    Great to hear from you! Wow MD Anderson sounds like the Emereld City of cancer centers! Sounds like you're in good hands, let's hope the powerful Oz there has the answers you seek! Great news on the stale cancer. That's a funny description, here's to continued staleness! The whole SRBT thing is ridiculous. Their master plan is to give you so many hoops to jump through you trip on one and die from head trauma! Just kidding, you hit some arbitrary dollar amount and there is some accountant over there getting paid to stall you forever- don't let them! Good luck and keep us posted!

    Easyflip/Richard

    Your story is so uplifting. I

    Your story is so uplifting. I love hearing about someone fighting so hard and making things happen and being so proactive. And that you're active. Some days it's all I can do to go out and brush my horse let alone ride him and many days I don't see him at all. Next year my plan is to take up a new discipline with him so I have a goal for next year. I also want to take motorcycle riding lessons even though I doubt I'll ever have one. My daughter has one and I'd like to know that I could ride it if I wanted to.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #32
    JanJan63 said:

    Your story is so uplifting. I

    Your story is so uplifting. I love hearing about someone fighting so hard and making things happen and being so proactive. And that you're active. Some days it's all I can do to go out and brush my horse let alone ride him and many days I don't see him at all. Next year my plan is to take up a new discipline with him so I have a goal for next year. I also want to take motorcycle riding lessons even though I doubt I'll ever have one. My daughter has one and I'd like to know that I could ride it if I wanted to.

    I think a fighting attitude

    I think a fighting attitude truly helps. The end of this month i will have officially survived stage IV for 9 years. I took a motorcyle riding class last September and got my lisence. Bought a motorcyle the following week have now put 3500 miles on the bike in a year. I love it. Its never too late to learn to ride. I actually got my lisence on my 49th birthday.

    You have a lot of living ahead of you.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #33
    janderson1964 said:

    I think a fighting attitude

    I think a fighting attitude truly helps. The end of this month i will have officially survived stage IV for 9 years. I took a motorcyle riding class last September and got my lisence. Bought a motorcyle the following week have now put 3500 miles on the bike in a year. I love it. Its never too late to learn to ride. I actually got my lisence on my 49th birthday.

    You have a lot of living ahead of you.

    Wow! You rock!! By the way, I

    Wow! You rock!! By the way, I love your dog in the avatar, what kind of dog is that?

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #34
    JanJan63 said:

    Wow! You rock!! By the way, I

    Wow! You rock!! By the way, I love your dog in the avatar, what kind of dog is that?

    The dog is an Italian

    The dog is an Italian Greyhound. The toy version of a greyhound. They only weigh about 15 pounds. We also have Weimaraners a parrot two dwarf goats and some ducks an chickens.

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    #35
    janderson1964 said:

    The dog is an Italian

    The dog is an Italian Greyhound. The toy version of a greyhound. They only weigh about 15 pounds. We also have Weimaraners a parrot two dwarf goats and some ducks an chickens.

    What a cutie! I love

    What a cutie! I love Weimarainers, too.

    I owned a dog daycare and grooming shop until the cancer made me have to give it up so I'm a dog nut. We have four dogs, a pitbull, two pitbull crosses and a cocker/lab cross. They're all a bunch of lazy bums that lie around snuggled up together. Or play tugger in a group. My dream is to have an acreage again- we used to- and a pond and have the crested ducks with the pom poms on their heads. And have our horses there, of course.

  • Phil64
    Phil64 Member Posts: 838 Member
    #36
    LIKE

    Man. We need a like button on this network. 

    Jeff, I LIKE the fight that reverberated throughout your plan. And thank you for sharing because it motivates me to think big in terms of fighting this disease.

    Sending up some prayers for you.

     

     

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #37
    Phil64 said:

    LIKE

    Man. We need a like button on this network. 

    Jeff, I LIKE the fight that reverberated throughout your plan. And thank you for sharing because it motivates me to think big in terms of fighting this disease.

    Sending up some prayers for you.

     

     

    You inspire me as well

    You inspire me as well surviving 2 cancers and recurrences.

  • lp1964
    lp1964 Member Posts: 1,239 Member
    #38
    janderson1964 said:

    You inspire me as well

    You inspire me as well surviving 2 cancers and recurrences.

    Hey Jeff,

    I know this is a lot of action for anybody and I just wanted to express my appreciation on the hard work you do. Also wanted to cheer you on to keep going

    until optimal resolution is achieved.

    All the best man,

    Laz

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #39
    lp1964 said:

    Hey Jeff,

    I know this is a lot of action for anybody and I just wanted to express my appreciation on the hard work you do. Also wanted to cheer you on to keep going

    until optimal resolution is achieved.

    All the best man,

    Laz

    Thanks Laz.

    Thanks Laz.

  • Cathleen Mary
    Cathleen Mary Member Posts: 827 Member
    #40
    janderson1964 said:

    Thanks Laz.

    Thanks Laz.

    Still praying for you.  What

    Still praying for you.  What an inspiration! Going to Texas appears to be a good decision for you. Nine years is truly amazing....you are the symbol of what it means to be proactive.

    Enjoy biking....be careful!

    CM

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    #41
    Cathleen Mary said:

    Still praying for you.  What

    Still praying for you.  What an inspiration! Going to Texas appears to be a good decision for you. Nine years is truly amazing....you are the symbol of what it means to be proactive.

    Enjoy biking....be careful!

    CM

    I just read the scan report

    I just read the scan report myself. One chestwall lesion shrunk 3mm. The other "is not visible". My oncologist sais it wasremarkable.

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