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TOPIC: Tavalisse, experience

Tavalisse, experience 2 months 3 weeks ago #64695

  • 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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Like to know if anyone here has had any experience with Tavalisse, and what if you don't have a spleen. In that Travalisse is a spleen (SKY) tyrosine kinase inhibitor.

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Tavalisse, experience 2 months 3 weeks ago #64713

  • Hal9000
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A Clow, here is a report on Fostamatinib (aka Travalisse) phase 3 FDA trial.
www.raredr.com/news/phase-3-data-fostamatinib-published
"
Fostamatinib produced clinically‐meaningful responses in ITP patients, including those who failed splenectomy, thrombopoietic agents, and/or rituximab.
"
Sounds like you're good to go. Best of luck to you and Kimberly.

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Tavalisse, experience 1 week 3 days ago #65333

  • luca
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I also am interested in Tavalisse after having a failed Splenectomy 2 weeks ago. Did you ever take it, and if so, what has been your experience?

FYI: I did OK on Promacta for 5 years but my numbers kept dropping (into the low teens) even after I maxed out the dosage of 75mg, so I decided to do the Splenectomy. While I have no regrets (yet!) I felt like I would always wonder if I could be "cured" with the surgery, and at 67 years of age, I didn't think I should wait any longer...

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Tavalisse, experience 1 week 2 days ago #65338

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Luca, have you ever tried a low dose Prednisone with Promacta?
Several folks that I have seen, who lose response, do well with that combination to get back to a lower Promacta dose.

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Tavalisse, experience 1 week 1 day ago #65346

  • luca
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Thanks for the suggestion Hal; I'll ask my Hematologist. No medical person has suggested that yet, and I suspect that there is reluctance to use Prednisone--even at a low dose--for prolonged periods of time due to its side effects. But, as I'm forced to look at all alternatives, I will certainly look into it!!
Meanwhile, it is interesting to note that I have not yet heard back from anyone who has tried or has been on Tavalisse...

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Tavalisse, experience 1 week 1 day ago #65349

  • mrsb04
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I participated in the FIT trials both double blind and open label extension. It never did a thing for me I'm afraid. The other lady from my clinic who also participated had a moderate response for a year but after that was back down to counts in single figures. It hasn't been licensed in the UK or anywhere else in Europe.
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Tavalisse, experience 1 week 23 hours ago #65352

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luca wrote: Thanks for the suggestion Hal; I'll ask my Hematologist. No medical person has suggested that yet, and I suspect that there is reluctance to use Prednisone--even at a low dose--for prolonged periods of time due to its side effects. But, as I'm forced to look at all alternatives, I will certainly look into it!!
Meanwhile, it is interesting to note that I have not yet heard back from anyone who has tried or has been on Tavalisse...

Luca, I don't respond to steroids, at all, which may be the reason why I find myself suggesting them to others. It's not me that has to take them. On the other hand, I see them as a useful tool for ITP that isn't available to me.

As an example, 'Lman' recently levered Pred with Promacta combination. He started at 25mg and it took some 12 weeks for full response.
pdsa.org/discussion-group/7-treatment-general/30054-rituximab.html?start=30#65128
"
... counts checked every two weeks ...
... 60 (25mg), 148 (20mg) , 47 (15mg) , 50 (10mg) , 90 (7.5mg) , 203 (5mg) ...
"
As you can see 20mg appeared to be very effective. Lower doses were more of a accumulation over time thing.

Are you taking 50mg or 75mg of Promacta now, for a modest improvement?

As for Tavalisse/Fostamatinib. The only person I've seen here with a reported good response is 'sachmo16'. Note that he/she responded to IVIG and was using regular IVIG treatments before then. It seems some folks, IVIG, and higher doses of Nplate, is about all they (row 4) respond to.
pdsa.org/discussion-group/search.html?searchuser=sachmo16&exactname=1&searchdate=all&order=dec&childforums=1

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Tavalisse, experience 1 week 20 hours ago #65355

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Thanks for the info Hal. I have written to Sachmo and hope to get an update.
As for the Prednisone/Promacta combo, I guess I'm still confused on how it is administered; i.e. while they tapered down from 25 mg. of Pred to 5 mg, wouldn't they then have to start the regimen over again (with 25 mg) to keep it going? If so, that pretty much gets one's body hooked on Pred dependency and side effects issue (top of which is shutting down the Adrenal glands' production of hormones)?
As for my use of Promacta, I have been on the max 75 mg. does for the past year, with numbers as low as 7K, but usually averaging in the low teens. One of my docs insists that "once effective always effective" applies to Promacta, but the 7K score really got me concerned that this drug is minimally effective in my case, hence the trial Splenectomy, which has apparently failed.

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Tavalisse, experience 6 days 21 hours ago #65366

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luca wrote: ... One of my docs insists that "once effective always effective" applies to Promacta, but the 7K score really got me concerned that this drug is minimally effective in my case ...

From what I've seen, 'always effective' would be correct. Promacta may look to have become ineffective but what appears to happen is that a second antibody comes into play. Looking at my ITP treatments table. Since you started with a good steroid response that would be a row 1 antibody. Many folks I've seen here also start with row 1 but end up with a row 2 antibody too. Notice that row 2 responds to very few drugs. The good part is that it seems to go into remission easily and often. This is the reason I asked if you had tried steroids with Promacta yet. I would also note that some folks here are on 100mg Promacta. I suspect they are younger, not sure.

Another person that has taken Fostamatinib is user 'jasondema'. Here is his thread.
pdsa.org/discussion-group/7-treatment-general/30100-fostamatinib-low-dose-prednisone-and-high-dose-nplate-triple-therapy.html?start=0#63796
To keep his head above water, he needed an Nplate 10 dose (highest available) AND either regular IVIG or 10-20mg of Pred. He ended up not responding to Fostamatinib alone. As you may know, it is only effective for 18% of the general ITP population.

Because of the week steroid response I wondered if he had row 1 antibody, in addition to the row 4 antibody. Two antibodies being the reason why there was no response. I suggested he take Nplate with Fostamatinib to overcome the row 1 antibody. I couldn't persuade him / his doctor. I would suggest the same thing with you. Probably best to take Promacta and Fostamatinib at the same time.
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Tavalisse, experience 6 days 4 hours ago #65371

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Hal: I am somewhat confused about your chart, and have several questions. First, if I had a moderate response to Pred. but never tried IVIG, how does that enter in on the chart? Second, you discuss "4 antibodies" but I don't understand how you derived this. Do you have a stream somewhere that explains the basis of the chart and/or any citations you used to figure this out? Third, except for maybe Prednisone and emergency treatments, I have not seen anything in the ITP literature that recommends taking two major treatments at the same time (i.e. Tavalisse and Promacta); can you provide a reference or source? As you suggested to Jasondema, it is going to be a hard sell to both our docs AND the insurance companies to provide both meds at the same time (both of which cost in the $80-100K range!). Finally, back to the chart, if there is some way to identify these 4 antibodies objectively, wouldn't that imply that we should be able to predict the success or failure of a Splenectomy (or other major treatment for that matter)?

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Tavalisse, experience 5 days 22 hours ago #65374

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luca
I have never had IVIg so don't fit into Hal's chart either. I'm also a firm believer in evidence based medicine rather than conjecture.

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Tavalisse, experience 2 days 3 hours ago #65404

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Hello All,

Luca...sorry I was not able to get back to you before. I just checked my messages. For me, Fostamatinib did not work. I tried it at 100mg and 150mg and it did nothing for me at all. No response. I paired it with prednisone and NPlate (max dose) and it did nothing. Hopefully, it will do something for you..but at an 18% overall response rate...I think this medication is a long shot for effectiveness.

As for an update on my ITP situation..I went for the indium scan back in September (travel from NYC to London) and my results were a spleen / liver ratio of 3.24 which is showing that the issue is in the spleen. I met with Dr. Provan, who suggested prior to a splenectomy...to do the following:

8 weeks of NPlate max dose + prednisone 15mg daily + Cell Cept 2000 mg daily.........if this fails (which it is because it has been 6 weeks and platelet count still under 30k) then do the following...........8 weeks of Promacta 75 mg to 100 mg daily + prednisone 15mg daily + Cell Cept 2000 mg daily.

The idea is to have the TPO (Promacta or Nplate work with the Cell Cept combo)....If this works..then I can get off of the prednisone. So far, everytime I go below 15 mg of prednisone...my counts begin to drop into the teens.

I am going to Calcutta, India on December 23rd. When I return on January 2nd..we will be switching me from weekly NPlate shots to Promacta. I will be getting an IVIG as a bridge to prevent a platelet crash while I wait for the Promacta to kick in (typically about 2 weeks) as the NPlate rapidly loses its effectiveness.

If this all fails then do the splenectomy in early March.

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Tavalisse, experience 2 days 3 hours ago #65405

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Thanks for the update Jason. I sent you in another stream my history with the Indium Scan back in 2013, which was highly positive for the spleen (6.14), but nonetheless, my Splenectomy 3 weeks ago failed to help, with my numbers dropping to 4K last week. I can't say I regret having the surgery, which was done by laparoscope, since it finally answered the question as to whether removing the spleen would work for me. As for your situation, like me when the Promacta became less effective (counts in the low teens) I too looked for a backup plan, so I understand your logic and plan. Good luck in your deliberations and hopefully you can find a solution that you can live with...

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