Well, I lost a week of my life.....

jam66
jam66 Member Posts: 55
Hey all. So you may remember that I went for il-2 therapy a couple weeks ago. All was going well, and I just about finished the treatment. But towards the end, my blood pressure began to dip dangerously low. I had to be intubated and therein begins my week from hell. Pretty sure I don't know what happened, or why. I do know that the brain swelling caused by the swell was temporary. Man, what a trip.
So now a new treatment awaits. Has anyone heard of glass bead therapy out of Stanford?

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    IL2
    Hi Jennifer, good to hear from you. I'm afraid I don't know about glass bead therapy but will be interested to be educated on the subject.

    I'm sorry you had to come off the IL2, particuloarly since I'm awaiting evaluation of whether I might try it soon. What is the conclusion about its efficacy for you, or is it too soon to draw up that balance sheet?

    Like everyone else here, I hope your next treatment enjoys success.
  • jam66
    jam66 Member Posts: 55

    IL2
    Hi Jennifer, good to hear from you. I'm afraid I don't know about glass bead therapy but will be interested to be educated on the subject.

    I'm sorry you had to come off the IL2, particuloarly since I'm awaiting evaluation of whether I might try it soon. What is the conclusion about its efficacy for you, or is it too soon to draw up that balance sheet?

    Like everyone else here, I hope your next treatment enjoys success.

    You know, some people are
    You know, some people are able to deal with it, some are not. I guess I just wasn't one one the lucky ones. :(. Nanalou sounds like she did great.
    Guess there was really no way to know that. But they should have ,maybe stopped the therapy? Hindsight is 20/20, I guess. I do know I wont be going back for another treatment, though.
    I hope that it proves useful for for you though. Pretty sure if I could do it all over again, I would.

    Hope that helps. I see my oncologist on Wednesday....so I'll have more info then.
  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    jam66 said:

    You know, some people are
    You know, some people are able to deal with it, some are not. I guess I just wasn't one one the lucky ones. :(. Nanalou sounds like she did great.
    Guess there was really no way to know that. But they should have ,maybe stopped the therapy? Hindsight is 20/20, I guess. I do know I wont be going back for another treatment, though.
    I hope that it proves useful for for you though. Pretty sure if I could do it all over again, I would.

    Hope that helps. I see my oncologist on Wednesday....so I'll have more info then.

    We're all different
    Yes, Nancy does seem to have done very well indeed. Thanks for your comment about doing it over again and I hope your meeting on Wednesday proves fruitful.
  • alice124
    alice124 Member Posts: 896
    IL-2
    Jennifer,

    I'm sorry the IL-2 had to be discontinued, but you were a real trooper for taking it on in the first place. It's tough therapy.

    Since you "just about finished the treatment," will there be a scan to see if reduction has occurred? How many doses did you actually receive?

    Here's to success in your next battle!
  • NanaLou
    NanaLou Member Posts: 71
    alice124 said:

    IL-2
    Jennifer,

    I'm sorry the IL-2 had to be discontinued, but you were a real trooper for taking it on in the first place. It's tough therapy.

    Since you "just about finished the treatment," will there be a scan to see if reduction has occurred? How many doses did you actually receive?

    Here's to success in your next battle!

    Great to hear from you!!
    So glad your back on the board. i was was worried about you. Sounds like I needed to be. Well the IL2 wasn't for you. The next treatment will be. And, I wouldn't say I did well. I just did it. It is teh toughest thing I have been through so far. I really hope and pray it works. But, I totally dread going back in January. My prayers are with you and glad your back!!
  • Max Power
    Max Power Member Posts: 60
    jam66 said:

    You know, some people are
    You know, some people are able to deal with it, some are not. I guess I just wasn't one one the lucky ones. :(. Nanalou sounds like she did great.
    Guess there was really no way to know that. But they should have ,maybe stopped the therapy? Hindsight is 20/20, I guess. I do know I wont be going back for another treatment, though.
    I hope that it proves useful for for you though. Pretty sure if I could do it all over again, I would.

    Hope that helps. I see my oncologist on Wednesday....so I'll have more info then.

    IL-2
    Maybe the IL-2 had some effect even if only a week's worth. For me (2 weeks) it bought stability for quite awhile - I would see if you are stable or progressing before going on another treatment.

    I wouldn't blame the staff for letting it get so out of hand, most everyone is on some sort of edge during the treatment.

    Raising a glass to you for your trial and endurance.
    Max
  • foxhd
    foxhd Member Posts: 3,181
    NanaLou said:

    Great to hear from you!!
    So glad your back on the board. i was was worried about you. Sounds like I needed to be. Well the IL2 wasn't for you. The next treatment will be. And, I wouldn't say I did well. I just did it. It is teh toughest thing I have been through so far. I really hope and pray it works. But, I totally dread going back in January. My prayers are with you and glad your back!!

    Moving on
    I concur with NanaLou completely. Good effort but unfortunately it wasn't for you. Next one will be much more tolerable.
  • angec
    angec Member Posts: 924
    jam66 said:

    You know, some people are
    You know, some people are able to deal with it, some are not. I guess I just wasn't one one the lucky ones. :(. Nanalou sounds like she did great.
    Guess there was really no way to know that. But they should have ,maybe stopped the therapy? Hindsight is 20/20, I guess. I do know I wont be going back for another treatment, though.
    I hope that it proves useful for for you though. Pretty sure if I could do it all over again, I would.

    Hope that helps. I see my oncologist on Wednesday....so I'll have more info then.

    Jam.. what the others have
    Jam.. what the others have said makes perfect sense. Remember that the gentleman here had two weeks worth of treatment but was stable for quite some time (was it two years?). So although you may not have been able to tolerate more, you have come a long way. You went through so much like a trooper! When the IL2 works it seems to do a pretty good job even when not used to the full. I am so sorry you went through so much. Pat yourself on the back and know that if it were someone else that went through what you did, you would be the first one to commend them for their strength and determination. You are a hero in my book! xoxo Keep the faith!
  • jam66
    jam66 Member Posts: 55
    angec said:

    Jam.. what the others have
    Jam.. what the others have said makes perfect sense. Remember that the gentleman here had two weeks worth of treatment but was stable for quite some time (was it two years?). So although you may not have been able to tolerate more, you have come a long way. You went through so much like a trooper! When the IL2 works it seems to do a pretty good job even when not used to the full. I am so sorry you went through so much. Pat yourself on the back and know that if it were someone else that went through what you did, you would be the first one to commend them for their strength and determination. You are a hero in my book! xoxo Keep the faith!

    Thank you one and all
    Thanks for the words of encouragement everyone. Y'all are too kind. I hope and pray you're right,, and that I'll have a couple years off of yet another therapy. I'll see what the doctor says on Tuesday...