What is the wait time to receive treatment with IL-2 ?

rook
rook Member Posts: 7 Member
edited August 2014 in Kidney Cancer #1

From making the initial appointment, to first dose, how long did the process take for those of you in the USA? My mother progressed on nivolumab and I am advocating she try IL-2 while still relatively healthy. This is probably her last chance to try it. She is either performance status 0 or 1, definitely not 2.

I am concerned by the time she gets an initial consult, then does the standard battery of tests, a month or more may go by, leaving her fast growing cancer to multiply unabated. After all that wait time, she may not even be allowed to receive treatment, and will have to go on the standard therapy regardless.

Comments

  • Billy's Wife
    Billy's Wife Member Posts: 52
    #2
    We too felt the frustration

    We too felt the frustration of waiting too long.  The first time my husband had no visible disease and like your mother was healthy and strong.  From the time of scheduling to treatment he waited about three months.

    The second time when his doctor suggested IL2 he had more advanced disease and was very upset about waiting two months because afterall it is cancer and everyone tells you early detection and treatment is essential.  That time he sought other treatment in the meantime and was too sick to undergo the IL2 by the time the two months was up.  He really didn't want to do it again  because it is very difficult to go through.  In my husband's case the wait was due to scheduling and the fact that alot of places don't offer IL2 at all. 

    Is there another medical professional who can listen to your concerns in order to get a better handle on whether or not she'd qualify for IL2 and the fact that in the meantime she is doing nothing to combat the disease and how much this concerns the family? I am thinking family doctor, nurse in the oncologists office, or a second opinion, though lots don't off er IL2 at all.

    Good luck and prayers to your mother and you!

     

  • rook
    rook Member Posts: 7 Member
    #3
    Billy's Wife said:

    We too felt the frustration

    We too felt the frustration of waiting too long.  The first time my husband had no visible disease and like your mother was healthy and strong.  From the time of scheduling to treatment he waited about three months.

    The second time when his doctor suggested IL2 he had more advanced disease and was very upset about waiting two months because afterall it is cancer and everyone tells you early detection and treatment is essential.  That time he sought other treatment in the meantime and was too sick to undergo the IL2 by the time the two months was up.  He really didn't want to do it again  because it is very difficult to go through.  In my husband's case the wait was due to scheduling and the fact that alot of places don't offer IL2 at all. 

    Is there another medical professional who can listen to your concerns in order to get a better handle on whether or not she'd qualify for IL2 and the fact that in the meantime she is doing nothing to combat the disease and how much this concerns the family? I am thinking family doctor, nurse in the oncologists office, or a second opinion, though lots don't off er IL2 at all.

    Good luck and prayers to your mother and you!

     

    Her cancer hospital is highly

    Her cancer hospital is highly regarded and they do not offer IL-2. Maybe that is why they never mentioned it as an option.

    Could you provide some more detail on why scheduling was so painfully long? Three months is an eternity in cancer. Was your husband ever able to go through a cycle of IL-2? I'm sorry for your loss.

  • GSRon
    GSRon Member Posts: 1,303 Member
    #4
    rook said:

    Her cancer hospital is highly

    Her cancer hospital is highly regarded and they do not offer IL-2. Maybe that is why they never mentioned it as an option.

    Could you provide some more detail on why scheduling was so painfully long? Three months is an eternity in cancer. Was your husband ever able to go through a cycle of IL-2? I'm sorry for your loss.

    Also keep in mind that there

    Also keep in mind that there are a bunch of clinical trials going on (and more to come soon) for other Immunotherapy drugs.  This includes IL-15 which is similar to IL-2 but is hoped to have less nasty side effects.  I suggest you look at the available clinical trials, and see what is out there near you.  Even if you do not go on one, it is a good awareness.  It seems like the combinations are having the best results so far, but it is early, results wise.  If you look in the left hand column in the blue there is the Clinical Trials Finder.

    Good Luck..

    Ron

  • Billy's Wife
    Billy's Wife Member Posts: 52
    #5
    rook said:

    Her cancer hospital is highly

    Her cancer hospital is highly regarded and they do not offer IL-2. Maybe that is why they never mentioned it as an option.

    Could you provide some more detail on why scheduling was so painfully long? Three months is an eternity in cancer. Was your husband ever able to go through a cycle of IL-2? I'm sorry for your loss.

    Thank you........My husband

    Thank you........My husband had to wait for IL2 both times because other patient's were scheduled ahead of him.  Because his doctor was the only one at her hospital who offered it they could only accomadate a couple of patient's at a given time.  She is an RCC specialist and highly regarded by her colleagues.  Many do not offer IL2,  and that is why they won't mention it as an option.  IL2 is considered a cure if it works.  My husband's doctor felt that because of that it was worth offering even though it is brutal.  Unfortunately it doesn't work for everyone but you never know if you will be the lucky one that is why it is worth a try to most. 

    Yes three months is an eternity when facing cancer that is why my husband sought another treatment in the meantime.  Even if he had been able to undergo more IL2 the second time I don't think he would have been able to endure much of it, by then he was just too sick with multiple mets.  Good luck and prayers to you and your family.

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