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TOPIC: Another year and another new drug Velcade

Another year and another new drug Velcade 1 week 1 day ago #65527

  • A Clow
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  • I am a father a three children. My wife and I have already lost one child to ITP in 1995. Our youngest Kimberly now 35, has chronic ITP with a hyper coagulation condition as well.
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After a real bad side effect reaction from tavalese, Kimberly's Dr. has now gone back to Chemo for a new try at getting her ITP under control. The new drug is Velcade. A chemo therapy drug normally used for the treatment of multiple myeloma. In recent studies, Velcade has shown to have a positive effect on the stabelization of platelet counts of ITP patients.
As normal, side effects are tough. Severe bone pain, tiredness, lack of appetite, diareah and so on. No walk in the park. And this was after only one dose. She's due for the second of four doses over four weeks tomorrow.
Our hopes are that it not only stabilizes her platelet counts but also her Hemoglobin and iron levels ( which have been dropping in common with her platelets ) without having a negative effect on her clotting problems.

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Another year and another new drug Velcade 1 week 19 hours ago #65536

  • Hal9000
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Sounds promising A Clow. Wikipedia gave me a generic name of 'Bortezomib' for Velcade. Question. Do you know if she has ever had mononucleosis?

On Tavalisse. How long was she on it? 100mg or 150mg? Was the bad reaction because of digestive issues? Seems as I've read that was a problem with it.

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Another year and another new drug Velcade 1 week 19 hours ago #65537

  • A Clow
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  • I am a father a three children. My wife and I have already lost one child to ITP in 1995. Our youngest Kimberly now 35, has chronic ITP with a hyper coagulation condition as well.
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No, she never had the Epstein Barr virus ( Mono ). As far as the Tavaleese, not sure the dose, but it turned her into a Zombie. Half awake, half asleep,. Completely put of it. Two doses and we stopped it.
As far as Chemo, the Cytoxan didn't help. All she got from that was the loss of her hair and severe bone pain from the growth factors. Hopefully the Velcade will have some positive outcome.

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Another year and another new drug Velcade 6 days 20 hours ago #65541

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My niece has Hashimoto's, which is the immune system attacking the thyroid. One has to wonder how much of these conditions are genetics, how much are environmental, or both. But they just haven't figured it out yet.

On the Cytoxan, right. I've got user 'Winnifred' and user 'packh1@yahoo.com' as both having periods of remission with Cytoxan and Rituxan - hence the addition of Cytoxan in my ITP table. I removed Kimberly, my confusion on that one.

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Another year and another new drug Velcade 6 days 2 hours ago #65548

  • A Clow
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  • I am a father a three children. My wife and I have already lost one child to ITP in 1995. Our youngest Kimberly now 35, has chronic ITP with a hyper coagulation condition as well.
  • Posts: 37
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Update from yesterdays appointment. Kimberly's platelets jumped to 112K from Monday's count of 27K and her HEMO went to 9.8 from 8.2 after one dose of the Velcade and decadron combination. Positive results after one week. She did receive her second dose of the Velcade yesterday and continues on the decadron. She is scheduled for two more doses of the Chemo over the next two weeks. Dr's plan if positive counts continue is to reduce the frequency of the Chemo to twice monthly and reduce the doseage of the decadron over the following two months per the proticol reccomendations.
As a side note, side effects from the chemo have been severe back and bone pain, loss of appetite, no energy, continuous bad taste in her mouth.
Hopefully with increased HEMO she'll have a bit better energy level and feel a bit better.

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Another year and another new drug Velcade 4 days 20 hours ago #65551

  • Hal9000
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Oh wow, 112 on first dose. This is looking even better.

A quick search brought up this from 2014:
"A combination of bortezomib and rituximab yields a dramatic response in a woman with highly refractory immune thrombocytopenic purpura: a case report"
jmedicalcasereports.biomedcentral.com/articles/10.1186/1752-1947-8-19

And this one, which talks about combining Velcade/bortezomib with, oh my, 'NAC' of all things. I wonder if Kimberly's doctor knows about this combination used by others.
"How I treat refractory thrombotic thrombocytopenic purpura"
www.bloodjournal.org/content/125/25/3860?sso-checked=true

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Another year and another new drug Velcade 1 day 20 hours ago #65570

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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Has she ever had a response like that just from Decadron? Those side effects sound horrible!

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