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Newly Diagnosed

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5 years 6 months ago #67404 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
Thanks as always. As you say, it will be interesting to see what my Hematologist has to say about NPlate vs Rituximun and also procedure for longer term travel.
For the NC trip, I will be gone for a month so I was able to set up injections at a Hematologist within an hour of where I will be staying. I had to forward all test results, treatments, etc but at least I am covered.
I plan to talk to my Hematologist about Promacta which I understand is an oral drug as a travel alternative?
Regards

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5 years 6 months ago #67405 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
Unfortunately even 70mg of Prednisone did nothing to raise my count after three weeks so not an alternative.
I will see what my Hematologist says about Plate vs Rituximun and travel when I see him Friday.
Thank you

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 6 months ago #67417 by Hal9000
Replied by Hal9000 on topic Newly Diagnosed

Carducci7292 wrote: What do you think is keeping my count up, Rituximun or NPlate or both?

I don't think there is any doubt that Nplate is the dominant contributor Carducci. Don't know if Rituxan is helping a little. It's certainly possible.
Your speed of count improvement is very, very good.
ITP Types and Treatments by HAL

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5 years 6 months ago #67420 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
Thanks Hal. I appreciate you taking the time to reply.

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5 years 6 months ago #67461 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
So after 4 weeks at 1mcg N Plate, my count was 183,000 yesterday after 113,000 and 105,000 the last two Fridays. Hematologist cannot rule out Rituximun infusions from June as contributing to the high count but feels N Plate is the primary driver. Not sure why. I received a 1mcg injection yesterday and will have a CBC next Friday. That CBC and injection will be at a new Hematologist located in North Carolina. Have to travel up to check on a house that was in the cone of hurricane Dorian and will probably be there till November 1. Hoping no blips in my progress with the change.

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 6 months ago #67471 by Hal9000
Replied by Hal9000 on topic Newly Diagnosed

Carducci7292 wrote: So after 4 weeks at 1mcg N Plate, my count was 183,000 yesterday after 113,000 and 105,000 the last two Fridays...

Amazing Carducci. Really nice to see.

Hematologist cannot rule out Rituximun infusions from June as contributing to the high count but feels N Plate is the primary driver. Not sure why...

The way I've looked at it, is this. The 2 dose put counts at 248. If one was only taking Nplate then going from 2 to 1 dose would produce a little less than half that count - which is 124. Anything between 62 and 124 would be a reasonable expectation. You dialed in a count of 105. Seemed completely appropriate for someone taking just Nplate to me. Counts proportional to dose.

But now at 183. That is much higher than 124. Now it looks you are improving - more so. What is the cause? Could still be either Nplate or Rituxan. Either is capable. One way to know would be if you relapse sometime in the future. Months or years in the future. If you take only Nplate then, and achieve another remission, then you will know. Nplate will be enough for remission.
ITP Types and Treatments by HAL

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5 years 6 months ago #67479 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
Will be in North Carolina for the next bunch of weeks so I had a consult yesterday with a Hematologist in the area. He reviewed all of my tests and treatments and was in agreement. A CBC showed my count at 220,000 up from 183,000 on Friday. The NC Hematologist felt it is N Plate causing the high counts not Rituximun.
He suggested Promacta as an alternative to N Plate but wants my count to remain stable for another month before making any changes. He said the Promacta is a daily, oral drug that basically does the same thing as the N Plate but assuming i react well to it, Promacta could allow me to get to the point where blood tests were at 2 or 4 week intervals.
Do you have experience with Promacta and if so does the Hematologist's statements make sense?
Thanks as always for taking the time to respond.

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  • Hal9000
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  • Give me all your platelets and nobody gets hurt
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5 years 6 months ago - 5 years 6 months ago #67519 by Hal9000
Replied by Hal9000 on topic Newly Diagnosed
Carducci, you are improving awfully fast. Maybe 12.5 mg of Promacta every two or three days will lessen your worries. I'm a little surprised the doctor didn't talk about taking nothing and see what happens. When one goes into remission via Promacta or Nplate that's what it comes down to. Trying nothing and risking the result.

Usually when someone doesn't respond to Promacta it is because they need a high dose of Nplate. Obviously not the case here.
ITP Types and Treatments by HAL

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5 years 6 months ago #67520 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
Thanks. 188,000 count yesterday and received 1mcg. Dr. wants me to remain stable for another month before trying Promacta or as you say going to no injection and seeing how i react.
Hope you are doing well.

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  • Hal9000
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5 years 6 months ago - 5 years 6 months ago #67537 by Hal9000
Replied by Hal9000 on topic Newly Diagnosed
Carducci, I am doing peachy-keen. Thanks. A bit of Promacta and a bit of Danazol does me just fine.

FYI, I was looking through 'tacmom' posts. Her daughter achieved remission via Nplate.
pdsa.org/discussion-group/search.html?searchuser=tacmom&exactname=1&searchdate=all&order=dec&childforums=1&limit=30

If you look around her Nov 2014 post. She was getting a count of 178 with, it appears, a one Nplate dose. Then, after stopping treatment, settled into a range of 100 to 130 long term. Compared to her, stopping treatment seems possible.
ITP Types and Treatments by HAL

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5 years 6 months ago #67538 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
I am hopeful like every other person with ITP. Both Hemotologists, North Carolina and Florida want me to be stable on 1mcg for at least another month before making any changes. I get the feeling I will have to tell them I am willing to take the risk of going off the N Plate before they will agree.
Thinking if I am still getting good numbers 4 weeks from now I will give it a shot and if my numbers drop I will try Promacta.
Thanks

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5 years 6 months ago #67588 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
I hope you are doing well/

I have been at 1mcg of N Plate for 6 weeks now and my count the last three weeks was 183000, 188000, and 200000. The Hematologist said if my count is 200000 or better this coming Friday the protocol is to drop the dosage 1mcg. That would mean I would not receive an injection at all. He said I would have a blood test the following Friday and if I dropped below 200000 I would again receive 1mcg.

While I am exited about the possibility of no injection, In the past I have seen my count drop in a two week timeframe from 220000 to 140000 to 113000 so I am concerned about what could happen. Have you heard of other people who faced the same situation?

Thanks as always for responding.

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  • Hal9000
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5 years 5 months ago #67605 by Hal9000
Replied by Hal9000 on topic Newly Diagnosed
You are doing so well Carducci, not much to be worried about.
ITP Types and Treatments by HAL

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5 years 5 months ago #67612 by Carducci7292
Replied by Carducci7292 on topic Newly Diagnosed
Thanks.
My count was 196,000. Asked the Dr about the possibility of no injection since 200,000 week before but she wants to stick with the N Plate protocols.
I am extremely happy that my numbers have been very good with a 1mcg dose. At the same time I would like to see if I can be stable even at a lower number with no injection. Maybe some time in the future.
Hope all is good with you.

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  • Hal9000
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5 years 5 months ago #67626 by Hal9000
Replied by Hal9000 on topic Newly Diagnosed
Yes, stable at a lower number seems likely. Only risk that comes to mind would be trying no injection around Flu season time.
ITP Types and Treatments by HAL

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