immunoglobulin therapy

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What my oncologist (and many others) dismissed as neuropathy for years was diagnosed last year as antineoplastic syndrome, finally, by sending a blood sample to the Mayo Clinic. I'm starting this therapy on Monday in hopes of regaining some of my mobility. Has anybody had this that would share their experience?

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  • leggo
    leggo Member Posts: 3,293
    edited March 2012

    Any nurses out there who can tell me what I'm in for? Onc made it sound so simple...sitting in a chair for a few hours, no side effects. Somehow, I don't believe him. I have read on the internet that it's hard on the heart and I really don't need that (never recovered from Herceptin heart damage). Please nurses, (or anyone else), please let me know what I'm in for before I go through with this. I want some of my mobility back, but I'd rather be alive and immobile than dead from what he says is a simple procedure. From my understanding this is usually reserved for lung and colon cancer patients, so even if you know of anyone who's had it for those cancers, I'd still like to hear your comments. Thanks.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    gracie,

    Interesting that you brought this up. My brother in law has been having weird symptoms for about 3 years. Coughing, asthma like symptoms and difficulty breathing. He's been hospitalized many times. He's seen this doc and that doc and no one has come up with what he has. Last night he said he was seeing an oncologist and maybe starting on immunoglobulin therapy. The therapy itself doesn't sound anything like chemo. They have sent sputum samples for culture for the next 3 weeks so won't start any therapy until then.

    You don't have the same issues since you are dealing with neuropathy. I don't quite understand why they are doing immunoglobulin therapy for neuropathy?

    tucker

  • leggo
    leggo Member Posts: 3,293
    edited March 2012

    That's just it. It's not neuropathy....just neuropathy-type symptoms. Once my blood sample was sent to the Mayo clinic, my onc was surprised to find out that I had this syndrome which produces antibodies that attack the nervous system. I had a boat-load of these antibodies. Only took three years to find out!!! The red flag that made him send the sample was when I said I would become paralyzed in hot bath water. Up until then everyone dismissed it as simple neuropathy from taxotere/taxol that I had years earlier. Apparently, this treatment can be used for all kinds of auto-immune disorders. Good luck to your brother-in-law!

  • nikola
    nikola Member Posts: 466
    edited March 2012

    Hello,

    I was receiving IVIG during my pregnancy. Before my successful pregnancy I had two miscarriages. Finally, I was tested and told I had anticardiolipin antibodies. As soon I would become pregnant those antibodies would attack fetus. I was told I have to be on IVIG every three weeks until week 27 when baby was big enough to survive. IVIG did not give me any side effects except mild headache if given too fast. It was infused in hospital over 3-4 hours.

    Good luck.

  • leggo
    leggo Member Posts: 3,293
    edited March 2012

    Thanks for the response nikola. I specifically asked my onc about whether or not the treatment is similiar to that given to women during pregnancy. He said no. I appreciate you taking the time to respond because I'm anxiously waiting for some answers. At least I'll know to look out for the "fast infusion" headache. Wish I knew more about cellular biology.

    Edited as I misunderstood your post...sorry!

  • crystalphm
    crystalphm Member Posts: 1,138
    edited March 2012

    I have a friend who gets this about every 3 weeks. it takes 2 days because they have to put it in slowly or she gets a terrible headache. The other possible problem is high blood pressure while it is going in, but the nurse will watch for that. She sleeps during most of the infusion time, been doing it for about 8 years now and it is going well.

     My friend has perhaps 3  difficult days (including the 2 infusion days), then feels very good for about two weeks, then the week before the next infusion is rough once again.

    but this is not done on my freind for cancer, it is lung and or neuropathy-related.

  • leggo
    leggo Member Posts: 3,293
    edited March 2012

    crystalphm, thank you for your response. If I'm reading it right, your friend is getting it to help with lung issues AND neuropathy? Has it helped the neuropathy at all? Sorry for all the questions, but I don't want to take any unnecessary risks, but I sure would like to function normally again.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited March 2012

    yes, it actually helped the neuropathy more than the lungs. I am talking about feet neuropathy that is not up to and above the knees.

    She has tried to go without the infusion several times because of the cost, but she always always feels better, like i said, maybe 3 or 4 days after the infusion. it is like a new lease on life for a few weeks, until the meds wear off and she needs a new infusion. There have been times in the last 8 years or so where she has gone 8 weeks between treatments and did very well.

  • leggo
    leggo Member Posts: 3,293
    edited March 2012

    crysalphm. I can't thank you enough for this information. I'm so happy it's actually helping your friend. Thank you for answering so quickly. I feel so much better about doing it myself now.

  • crystalphm
    crystalphm Member Posts: 1,138
    edited March 2012

    Oh you are welcome!!!

    This board is the greatest, isn't it?

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