Input needed

pattyanny
pattyanny Member Posts: 544
edited March 2014 in Head and Neck Cancer #1
Hi all - especially you veterans of CSN. I have my PET scan scheduled for 4/19. I received a call from Mt Sinai research department, and they want me to participate in a clinical study. After my PET, they want to do an MRI immediately after to develop a new machine that would combine the PET and the camera of the MRI. This sounded promising for future cancer patients, and would give a better picture of what is going on in the body, although it will not help me much now. They said that there is no added risk for me.
So friends, shall I be the test subject? Thanks, Patty
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Comments

  • SASH
    SASH Member Posts: 421 Member
    #2
    Gineau Pig
    I would say sure, why not unless you are claustrophobic or there is a cost to you or your insurance company. Normally trials aren't covered by insurance so you want to make sure that you aren't out of pocket for their research.
  • ratface
    ratface Member Posts: 1,337 Member
    #3
    SASH said:

    Gineau Pig
    I would say sure, why not unless you are claustrophobic or there is a cost to you or your insurance company. Normally trials aren't covered by insurance so you want to make sure that you aren't out of pocket for their research.

    It will make you feel good all over
    I second the motion by SASH, hard to get more veteran than him.
  • stevenl
    stevenl Member Posts: 587
    #4
    ratface said:

    It will make you feel good all over
    I second the motion by SASH, hard to get more veteran than him.

    Me too
    I would do it too. Think it will make you feel good.
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #5
    SASH said:

    Gineau Pig
    I would say sure, why not unless you are claustrophobic or there is a cost to you or your insurance company. Normally trials aren't covered by insurance so you want to make sure that you aren't out of pocket for their research.

    Agree
    I agree, if it's at no cost to you other than the extra time....
  • D Lewis
    D Lewis Member Posts: 1,581 Member
    #6
    Do it...
    Valuable additional information can be provided by the MRI. My insurance company actually required me to have the MRI before they would authorize the PET-CT. Not sure why, except Anthem Blue Cross is known to be difficult. My Stanford Tumor Board doctors said they could see important information on both the MRT and PET-CT. So - I second the group opinion that it couldn't hurt. I add the opinion that it might be of help.

    Deb L.
  • delnative
    delnative Member Posts: 450 Member
    #7
    D Lewis said:

    Do it...
    Valuable additional information can be provided by the MRI. My insurance company actually required me to have the MRI before they would authorize the PET-CT. Not sure why, except Anthem Blue Cross is known to be difficult. My Stanford Tumor Board doctors said they could see important information on both the MRT and PET-CT. So - I second the group opinion that it couldn't hurt. I add the opinion that it might be of help.

    Deb L.

    Please, do
    How could you not want to help others through this crappy damned disease? Why not use your experience to maybe make life easier for the next person down the road?
    When I was about to have my modified radical neck dissection at Johns Hopkins, I was asked if I would donate my lymph nodes to science, for a clinical study on HPV's role in H&N cancer.
    Of course I said yes. Once those nodes were removed from my neck, it's not like I had any further use for them.
    Go for it, gal, and thanks for helping.

    --Jim in Delaware
  • delnative
    delnative Member Posts: 450 Member
    #8
    D Lewis said:

    Do it...
    Valuable additional information can be provided by the MRI. My insurance company actually required me to have the MRI before they would authorize the PET-CT. Not sure why, except Anthem Blue Cross is known to be difficult. My Stanford Tumor Board doctors said they could see important information on both the MRT and PET-CT. So - I second the group opinion that it couldn't hurt. I add the opinion that it might be of help.

    Deb L.

    Please, do
    How could you not want to help others through this crappy damned disease? Why not use your experience to maybe make life easier for the next person down the road?
    When I was about to have my modified radical neck dissection at Johns Hopkins, I was asked if I would donate my lymph nodes to science, for a clinical study on HPV's role in H&N cancer.
    Of course I said yes. Once those nodes were removed from my neck, it's not like I had any further use for them.
    Go for it, gal, and thanks for helping.

    --Jim in Delaware
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    #9
    delnative said:

    Please, do
    How could you not want to help others through this crappy damned disease? Why not use your experience to maybe make life easier for the next person down the road?
    When I was about to have my modified radical neck dissection at Johns Hopkins, I was asked if I would donate my lymph nodes to science, for a clinical study on HPV's role in H&N cancer.
    Of course I said yes. Once those nodes were removed from my neck, it's not like I had any further use for them.
    Go for it, gal, and thanks for helping.

    --Jim in Delaware

    Definitely
    Sounds like the kinda scanning I wish I would be subject to on April 8th, instead of just the PS/CS combo. Will make for a longer day; however, if the results are more reliable, it does seem like the route to take.

    The bad stuff is the isotopes, which interact with the sugar water. Got no clue on how the MRI magnetic thing might interact with said, if at all. This is my advice disclaimer, by the way. Of note- I still have not had a MRI for C-detection. Sound reasonable? All opinions are welcome.

    Go for it, girl. You will be where I wish I will go on April 8th.

    kcass
  • Trew
    Trew Member Posts: 932 Member
    #10
    Just Drifting In from Somewhere Else
    I hang out in another section of these boards- but consider cancer like an adventure and take what comes. Maybe this will help us who have other cancers, too. We are all together in fighting this beast.

    I wish you well whatever you do.
  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Patty
    I too dont see where it will hurt anything unless like Kent said having to take the isotopes. At MD Anderson I would have to take the MRI one day and the PET the next day, it would be nice to have one machine to do it all. I guess the good part is all the people you might be able to help in the future by having a better scan.

    God be with you.
  • Glenna M
    Glenna M Member Posts: 1,576
    #12
    An honor...
    I agree with the others - as long as there is no out of pocket expense to you - I would do it. I think I would feel it was an honor to be a part of something that would benefit others who are fighting cancer.

    Please take care and stay strong.

    Glenna
  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    Choices


    What ever choice you make Patty know that there are many here behind you cheering you on.
  • pattyanny
    pattyanny Member Posts: 544
    #14
    It's a go!
    Thank you all for you input, I have researched the machine, and emailed the hospital with the questions you all brought up to me. I am awaiting their reply, but so far no reaction with isotopes, no cost to insurance. I think it will mostly time consuming, and maybe a bit which I thank God, I have! I read up on this technique, and although as I said, it won't help me, it may help future fighters. Hey! BTW - I gained 8 lbs this month! Whoo hoo! Thank you all for your knowledge, and support! Stay well! Love Patty
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    pattyanny said:

    It's a go!
    Thank you all for you input, I have researched the machine, and emailed the hospital with the questions you all brought up to me. I am awaiting their reply, but so far no reaction with isotopes, no cost to insurance. I think it will mostly time consuming, and maybe a bit which I thank God, I have! I read up on this technique, and although as I said, it won't help me, it may help future fighters. Hey! BTW - I gained 8 lbs this month! Whoo hoo! Thank you all for your knowledge, and support! Stay well! Love Patty

    Patty


    Way to go girl, I will be praying for you, glad to hear you are starting to gain a few lbs back.

    All the best and my God bless
  • pattyanny
    pattyanny Member Posts: 544
    #16
    Hondo said:

    Patty


    Way to go girl, I will be praying for you, glad to hear you are starting to gain a few lbs back.

    All the best and my God bless

    Thank you Hondo
    Thank you Hondo! My prayers are with you as well! Fatty Patty :)
  • Glenna M
    Glenna M Member Posts: 1,576
    #17
    pattyanny said:

    It's a go!
    Thank you all for you input, I have researched the machine, and emailed the hospital with the questions you all brought up to me. I am awaiting their reply, but so far no reaction with isotopes, no cost to insurance. I think it will mostly time consuming, and maybe a bit which I thank God, I have! I read up on this technique, and although as I said, it won't help me, it may help future fighters. Hey! BTW - I gained 8 lbs this month! Whoo hoo! Thank you all for your knowledge, and support! Stay well! Love Patty

    It's great to hear that you
    It's great to hear that you are finally gaining some weight. I've gained back 5 lbs since my treatment ended last Sept. but haven't been able to put more on. Of course the good weather is finally here and I am outside and more active than I am in the cold weather ;-)

    I hope everything goes well and you are able to do participate in the clinical study for the new machine they want to develop. It's amazing to think how much you may be helping future cancer patients. You will someday be "rewarded" for you compassion and courage.

    My best to you in all that you do.

    Stay strong and keep fighting.
    Glenna
  • Glenna M
    Glenna M Member Posts: 1,576
    #18
    pattyanny said:

    It's a go!
    Thank you all for you input, I have researched the machine, and emailed the hospital with the questions you all brought up to me. I am awaiting their reply, but so far no reaction with isotopes, no cost to insurance. I think it will mostly time consuming, and maybe a bit which I thank God, I have! I read up on this technique, and although as I said, it won't help me, it may help future fighters. Hey! BTW - I gained 8 lbs this month! Whoo hoo! Thank you all for your knowledge, and support! Stay well! Love Patty

    Sorry double post ;-(
    Oooops!! It's been a long time since I double posted.
  • pattyanny
    pattyanny Member Posts: 544
    #19
    Glenna M said:

    It's great to hear that you
    It's great to hear that you are finally gaining some weight. I've gained back 5 lbs since my treatment ended last Sept. but haven't been able to put more on. Of course the good weather is finally here and I am outside and more active than I am in the cold weather ;-)

    I hope everything goes well and you are able to do participate in the clinical study for the new machine they want to develop. It's amazing to think how much you may be helping future cancer patients. You will someday be "rewarded" for you compassion and courage.

    My best to you in all that you do.

    Stay strong and keep fighting.
    Glenna

    Hi Glenna
    Awww, come on Glenna, you can do better then 5 lbs! Peanut butter is great on the calories, although I am not a fan, I bought those pre-packaged sandwich crackers. The Carnation VHC by Nestle is 560 calories a can, and I drink three a day! I make it a point to have a late night snack before bed, which I figure sleeping won't burn off any calories.
    I expect more poundage in the future Glenna! Lol! Thanks for your post, and good wishes! Very much appreciated! Press forward in health!
    You can do this - although I would bet that your "puppy" keeps you active.
    BTW - Who takes who for the walks???? Hee hee!
    Love & Prayers, Patty
  • soccerfreaks
    soccerfreaks Member Posts: 2,788 Member
    #20
    Glenna M said:

    Sorry double post ;-(
    Oooops!! It's been a long time since I double posted.

    :)
    You are incorrigible, Glenna.

    Take care,

    Joe
  • Hondo
    Hondo Member Posts: 6,636 Member
    #21
    Glenna M said:

    It's great to hear that you
    It's great to hear that you are finally gaining some weight. I've gained back 5 lbs since my treatment ended last Sept. but haven't been able to put more on. Of course the good weather is finally here and I am outside and more active than I am in the cold weather ;-)

    I hope everything goes well and you are able to do participate in the clinical study for the new machine they want to develop. It's amazing to think how much you may be helping future cancer patients. You will someday be "rewarded" for you compassion and courage.

    My best to you in all that you do.

    Stay strong and keep fighting.
    Glenna

    Glenna / Patty
    5 lbs is
    Glenna / Patty

    5 lbs is good, after my last treatment in 2005 till this day I have only gain 14 of my 48lbs lost back, the nurse smiled when she told me I am gaining weight last month, eating too much veggies I guess.

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