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TOPIC: Cleveland Conference

Cleveland Conference 2 years 2 weeks ago #63953

  • Oliver091117
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I just got home from the ITP Conference this past weekend in Cleveland. WOW! I am so glad I went!!

Anybody else out there who was at the Conference?

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Cleveland Conference 2 years 2 weeks ago #63974

  • mhausser
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Hi Oliver,
Yes, it was my first time at conference and it was very helpful and also very glad I went. Can't wait to hear where the next one will be.

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Cleveland Conference 2 years 2 weeks ago #63976

  • Oliver091117
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Same here!

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Cleveland Conference 2 years 2 weeks ago #63980

  • Hal9000
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With any luck, next year it will be in my back yard of the country.

Question. Was there much talk about Fostamatinib? A lot of interest in it?

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Cleveland Conference 2 years 2 weeks ago #63983

  • Oliver091117
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Yes! There was talk of Fostamatinib. The mechanism was covered in one of the presentations and I spoke with someone who's been taking it successfully with no noticeable side-effects.

My new hem told me he was willing to try it with me once he had more information, so I snagged a packet for him. I had questions about how they would go about switching me from NPlate to Fostamatinib, so I called Rigel, and was told that my doc would have to fill out/submit an enrollment form for me, and then their docs would advise how to go about it. They also help with insurance and stuff. I'm trying not to be too much of a cynic, but I'm a bit suspicious of info that comes directly from the company that's selling it...

I have no clue as to whether or not it would work for me, but I'm somewhat desperate to get off the NPlate. I feel much more comfortable (in theory) with the mechanism of Fostamatinib over other options that are currently available, that it can be taken with food, and that I wouldn't have to go in every week for an injection. Definitely seems worth giving it a shot.

By the by, Hal-- I realized that the link I gave you a while back should give you access to my updated numbers for your study. If you need me to send you the link again just let me know.

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Cleveland Conference 2 years 2 weeks ago #63987

  • Hal9000
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Oliver091117 wrote: Yes! There was talk of Fostamatinib. The mechanism was covered in one of the presentations and I spoke with someone who's been taking it successfully with no noticeable side-effects.

My new hem told me he was willing to try it with me once he had more information, so I snagged a packet for him. I had questions about how they would go about switching me from NPlate to Fostamatinib,

Hahaha. Perfect question.
Will some sort of formulaic Nplate taper work, or, does one have to go back to IVIG to accomplish the switch safely. Also, there doesn't seem to be any sort of dose proportionality thing going on with Fostamatinib. It's more like a switch. Either on or off. Either it blocks this 'SYK' pathway, and a benefit is reaped, or it doesn't. With the drug effective and the pathway blocked, simultaneously taking a sizable Nplate dose could make counts rise to high numbers very quickly. Hopefully Rigel doctors have developed a good plan.

so I called Rigel, and was told that my doc would have to fill out/submit an enrollment form for me, and then their docs would advise how to go about it. They also help with insurance and stuff. I'm trying not to be too much of a cynic, but I'm a bit suspicious of info that comes directly from the company that's selling it...

I have no clue as to whether or not it would work for me, but I'm somewhat desperate to get off the NPlate. I feel much more comfortable (in theory) with the mechanism of Fostamatinib over other options that are currently available, that it can be taken with food, and that I wouldn't have to go in every week for an injection. Definitely seems worth giving it a shot.

Sure seems to be. You probably already know some folks have digestive issues with it, and that they can subside over time. Gotta try to know...

By the by, Hal-- I realized that the link I gave you a while back should give you access to my updated numbers for your study. If you need me to send you the link again just let me know.

Oh, I got your spreadsheet link. It's one of many tabs I leave open. I noticed you hadn't updated it when I pinged you on your thread about how things are going.

Not sure if I mentioned this before. That IVIG at the end of April gave you (another) nice 4-5 week response. It looked like a Nplate 4 dose was the dose needed - 'cause it worked for so long. But it didn't work in the long run because a long response like that occurs with row 3 antibodies and IVIG treatments. So, the recent 13 count after a week of a '4' dose occurred because there was no recent IVIG treatment.

Looks like you can be very stable on Nplate 5 dose. Nice.

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Cleveland Conference 2 years 2 weeks ago #63992

  • Hal9000
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Oh, I meant to ask.

With your counts being so stable, will your doc allow skipping a count check every other week, or something like that? But of course, still get an injection every week. Since those (like mrsb04) in the UK self inject, do they get counts checked every few weeks?

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Cleveland Conference 2 years 2 weeks ago #63994

  • Oliver091117
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Hal9000 wrote: Oh, I got your spreadsheet link. It's one of many tabs I leave open. I noticed you hadn't updated it when I pinged you on your thread about how things are going.


Hmm... it must be because I keep that tab open as well, and hadn't hit refresh until last night.

How are things with you?

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Cleveland Conference 2 years 2 weeks ago #63995

  • Sandi
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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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Oliver091117 wrote: I'm trying not to be too much of a cynic, but I'm a bit suspicious of info that comes directly from the company that's selling it...


Very smart!
The following user(s) said Thank You: Oliver091117

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Cleveland Conference 2 years 2 weeks ago #63996

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse. I retired in Nov 2019 after 46 years on the front line. I firmly believe in empowering patients to be involved as much as possible in their care; always question medics about the evidence base they use.
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Hal 9000 wrote-Since those (like mrsb04) in the UK self inject, do they get counts checked every few weeks?

I suppose that depends on whether their medics are following protocols correctly. NICE guidelines state for patients on TPOs platelet count must be checked weekly for 4 weeks when starting treatment or after dose changes until count is reasonably stable then monthly.

My count was never stable on Romiplostim so I endured many blood tests. With Eltrombopag I was on weekly bloods for absolutely ages as my count is very dose dependent, too little and it crashes too much and it rockets. I eventually progressed to fortnightly testing and for the last 3 months I have been promoted to monthly tests.

I'm lucky as I get my sample taken by colleagues when at work so don't often have the hassle of having to go to GP surgery.

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Cleveland Conference 2 years 2 weeks ago #64004

  • Hal9000
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Oliver091117 wrote:
Hmm... it must be because I keep that tab open as well, and hadn't hit refresh until last night.

How are things with you?


To be clear, I was seeing spread sheet changes every week until about the end of June.
On my end, I don't seem to need to do a refresh. I go to the tab and magically see new additions. You might want to go into help and look for the topic 'save or publish your chart'. Perhaps saving the sheet pushes changes to me / those viewing the link.

For me, my next lab test is in two weeks. For the week leading up to it I plan on consuming a good amount of gluten everyday. See what happens. Try to confirm or deny once and for all if, for me, there is a connection to either platelet count or creatinine levels.

mrsb04 wrote: Hal 9000 wrote-Since those (like mrsb04) in the UK self inject, do they get counts checked every few weeks?

I suppose that depends on whether their medics are following protocols correctly. NICE guidelines state for patients on TPOs platelet count must be checked weekly for 4 weeks when starting treatment or after dose changes until count is reasonably stable then monthly.

My count was never stable on Romiplostim so I endured many blood tests. With Eltrombopag I was on weekly bloods for absolutely ages as my count is very dose dependent, too little and it crashes too much and it rockets. I eventually progressed to fortnightly testing and for the last 3 months I have been promoted to monthly tests.

I'm lucky as I get my sample taken by colleagues when at work so don't often have the hassle of having to go to GP surgery.


Thanks for the info Anne. Perhaps some doctors follow that in USA.

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