First dose of Gazyva anyone else trying it?

With nothing else working and a recent trip to the ICU with 2000 plt and 4.9 hemo, we are trying Gazyva. She has been on N-Plate for some time with up and down results. Trying to balance her low platelets and manage her clotting problem is real difficult.
Our hopes are the Gazyva will give her a sustained count of at least 50k. He'll we'd take 30. Then I think we could better manage her blood thinner.
Sure would like to hear if someone else has had experience with Gazyva.

I have never heard of this medication being used for ITP. I couldn't find any info while searching it for ITP. Have you read any literature about the two? How many infusions has she had?

What actually happened with N-Plate? What clotting disorder does she have and how old is she?

Have you seen this?

GAZYVA, in combination with chlorambucil, caused Grade 3 or 4 thrombocytopenia in 10% of patients in the trial. In 4% of patients, GAZYVA caused acute thrombocytopenia occurring within 24 hours after the GAZYVA infusion. Fatal hemorrhagic events during Cycle 1 have also been reported. Monitor all patients frequently for thrombocytopenia and hemorrhagic events, especially during the first cycle. In patients with Grade 3 or 4 thrombocytopenia, monitor platelet counts more frequently until resolution and consider subsequent dose delays of GAZYVA and chlorambucil or dose reductions of chlorambucil. Transfusion of blood products may be necessary. Consider withholding concomitant medications that may increase bleeding risk, especially during the first cycle.

www.gazyva.com/hcp

Wow, I am full of questions! Sorry, need more info.

Hi A Clow, I remember your family appear to have familial thrombocytopenia and not true ITP. Do they know the mechanism for the lack of platelets? If it were me, I'd want to know the particular fault before treating. There is some suggestion of the TPO drugs, Nplate and Promacta, being used for this sort of thrombocytopenia but it's a treatment in its infancy just now.

Gazyva is a new rituximab type biologic.

Kimberly had responded well to Rituxan years ago, but developed a severe reaction upon the second go round so had to stop. Since then everything else has been tried. She is still on the nplate, 500mg weekly, but can't seen to sustain a count. One week she'll be in the 100's the next week she'll be in the teen's.
Sandi you're right Gazyva is not for ITP patients. But given it's similar mechanism to Rituxan, they felt it was worth a try. If this doesn't work the next choice is IV Citoxan.
Girls, remember Kimberly had her spleen removed, which had no effect on her ITP, but post surgery she developed a severe propensity to clot. She takes both 7.5cc's of Arixtra and asprin daily. When her platelets drop during one of her crashes, they stop the blood thinners and she clots. She now has clots in the femoral, upper and lower, both knees and two or three other areas. She must have a dozen stents at this point.

Not giving chlorambucil

Left the hospital Friday 10/16 after first dose of Gazyva 1000mg. 14,000 plts, 8.5 Hmg. Just returned from her Dr's today 10/19 89,000 plts 10.5 Hmg. Scheduled for second dose of Gazyva 1000mg on 10/22.

I really don't know what the situation is with your daughter.
But I am curious - will a count be done before her 2nd dose of Gazyva to make sure she needs it or will it just be given? [I'm asking because my new hematologist has told me she does not want my count to increase too quickly if I need treatment].

Hope this will help your daughter maintain a stable count!

Are you taking Gazyva?

I'm so sorry to hear about the clotting. That must be very scary. Do they know the reason for it, such as APS? Juggling both ITP and a clotting disorder is a lot to handle.

Maybe this will work for her....please keep us updated. Since it's not commonly used for ITP, I think we are all interested in how she responds. Her counts are perfect now; I hope she stays right in that range!

No I am not A Clow - my new hematologist mentioned that to me when I saw her for the first time this year and she was looking at all my records & noticed a few times my count had a huge increase when prednisone was increased (also when I had the real flu, but that was something that couldn't be helped), but I have not had to treat in 13 years.

Yes, please keep us posted!

It all sounds very scary. You must be very worried. I am sorry you have to go through this. I hope something works out.

I have not seen any mention here of thrombotic thrombocytopenic purpura (TTP).
Has this possibility been ruled out?

If the platelet destruction is thrombotic, that is, if the clotting is destroying her platelets and causing the low platelet counts, then eliminating blood thinners when counts are low could end up further decreasing the counts, I would think.

Fortunately, Rituxan can be effective for both ITP and TTP.

Gazyva (obinutuzumab) was designed to supersede Rituxan (rituximab), which is soon to lose its patent protection. If Rituxan worked before, then you have an excellent chance that Gazyva will work too, maybe better. While Rituxan is "chimeric", Gazyva is "humanized" which in theory lessens the chance of triggering a reaction.