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TOPIC: General Update

General Update 2 months 3 weeks ago #68594

  • Carcamoc10
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Hello everyone!

I’ve been meaning to post here for a bit to post an update and see how everyone’s doing, I hope well. So last appointment with my hemo went really well! Still credits late response to Rituxan for this stability in levels. Platelets that week were at 223K, so I was OK’d to do labs every 3 months now (which I’m ecstatic about) lol. Other than that, I’ve just been on a journey to try to work on my health. I’m still doing intermittent fasting and it hasn’t affected my platelets. I’ve lost 12 pounds in almost 2 months, so I’m going to keep at it until I meet my goal :) Also got to participate in this super cool market research for ITP where they came out to interview me about what my journey has been like. Did anyone else here do this? Let me know! Anyways, hope to hear from y’all, thanks for reading :)

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General Update 2 months 1 week ago #68673

  • Hal9000
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Your Hemo thinks it is (solely) a late Rituxan response because he is a newbie to ITP, LOL.

Perfect count Carcamoc. My counts are good too, but in a different way. Every 3 mo counts for 2019 have been: 51, 56, 46, and 57. Hemo and I laugh about the consistency. I tell her the lab is using my blood to calibrate their equipment. If next count (on 20th) is 58 or higher, I'm going to wonder if the low dose Danazol I'm taking is working VERY, VERY slowly.

On fasting. How many days are you fasting at a time? Did you find the first fasting day the hardest?

I've heard of online surveys, but not in-person interviews. Do you suppose PDSA is working with some company to do both these things?

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General Update 2 months 1 week ago #68678

  • Carcamoc10
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Hal: I have to wonder if he’s considered that maybe the high dosage Promacta had a part in my remission. I need to remember to ask him in May when I see him next lol.

And those are great counts! I personally care more about the counts staying relatively the same than the actual values (as long as over 30K of course). So how is the Danazol treating you?

As far as fasting, I’m not doing extended fasts...I do everyday for a minimum of 16 hours, although sometimes it will extend up to 20 depending on how I’m feeling! The first day was actually really easy...the whole first week was surprisingly simple!

For the market research ITP survey, they did have the option to do a guided web interview but I figured I’d do better speaking to an actual person lol. It was paid and from what I gathered, the pharmaceutical companies wanted to know what they can do to help with the worst parts of ITP. They were vague about what exactly, but I figured I’d speak candidly about the things that majorly suck about ITP. Hopefully something good comes of it!!

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General Update 2 months 4 days ago #68717

  • Hal9000
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Count was 47 today. No 58, blah, LOL. Low dose Danazol doesn't seem effective for long term improvement in my case. Besides it raising liver enzymes numbers a bit, it seems to be causing my pancreas to produce more insulin too. Not sure. Get the jitters, like with low blood sugar, every now and then. Makes me want to eat sugary things. Oddly as it may seem, besides sugar, vitamin D seems to help with the jitters too. LOL, need to start doing short fasts! See what happens.

At last summer's PDSA conference, the first (half) day was squarely focused on how patients feel about ITP. I think it was because the FDA was observing. Apparently it was first time FDA attended the conference. Maybe PDSA wants them to get involved financially in some way, I dunno.

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General Update 2 months 4 days ago #68719

  • MelA
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My former hematologist would have said 47k & 58k are the same.
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD

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General Update 2 months 3 days ago #68720

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 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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So would mine Mel.
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General Update 1 month 4 weeks ago #68757

  • Carcamoc10
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Mel & Mrsb, hope you both have been doing ok! How’s this Coronavirus craze treating y’all?
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General Update 1 month 4 weeks ago #68765

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 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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Hi Carcamoc
Thank you for asking
From an ITP point of view following a viral related crash to 7 just before Christmas count up 62 last week on 75mg Eltrombopag and 1mg Pred . Cut out Monday & Friday dose of Pred from last Monday.
Rehomed a sweet little dog at the beginning of the month then 2 days later had a mishap in the garden breaking both wrists, right one is in a cast and left one in a splint.. I am coping but it would be better if we were not in lockdown , as not the easiest thing to manage living alone and have lost the physical support of family and friends.. however am managing more since I was told to leave the sling off R arm for periods during the day

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General Update 1 month 4 weeks ago #68766

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 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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It appears I submitted this twice and one is unable to delete an entire post. One finger typing using none dominant hand is not easy !!

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General Update 1 month 4 weeks ago #68769

  • ecoclayton
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  • Diagnosed with ITP 5/23/19
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mrsb04,
What a rough time to break your wrists. I sure hope you heal fast and this crazy Covid-19 thing ends soon. I can't even imagine being stuck home and having 2 broken wrists with no support. My wife's Mother is very high risk and I feel so bad because we cannot help her like we usually do. We aren't officially locked down where I live, but our family is staying home as much as possible.
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General Update 1 month 4 weeks ago #68771

  • Carcamoc10
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Oh no Mrsb...I’m so sorry that happened to you...and at such a time as this! I’m glad to hear at least your platelets have come up. Hopefully you have a quick recovery & you have everything you need to have a comfortable lockdown!!
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General Update 1 month 4 weeks ago #68774

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 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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If all goes to plan splint and cast will be history 3 weeks today.

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General Update 1 month 4 weeks ago #68775

  • MelA
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Breaks my heart mrsb - so sorry about your accident & broken wrists. And that's not easy when you are alone!! When I broke my shoulder [no surgery] and had to be in a sling for months & the recliner was my "bed" I at least had my husband to do things for me since I could not use that arm at all. Wish I could help you out!

Our younger son's wife is a certified oncology RN so they told us from the start they were not going to get near us - she had her flu shot, as did our son & grandkids, but she still got Flu A. They don't want to be exposed without knowing it and pass on to us. We are doing FaceTime though - will take granddaughter's birthday gifts to their front porch and after we get home watch her open them on FaceTime. Will admit we are having Grandchild Withdrawal - miss them a lot! As of this morning all Colorado was put on stay-at-home-orders [but believe it or not, from what I understand, liquor stores & pot shops are considered essential].

Thank you for asking Carcamoc - so far doing good.
eco - hope your mother in law does well!
You all stay healthy - take extra precautions!!
"Instead of wasting your time worrying about symptoms, just get it checked out" -Nieca Goldberg, MD
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General Update 1 month 4 weeks ago #68777

  • CindyL
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Oh, Mrs. B, I just can't imagine what you're going through right now! I groaned when I first read your post and thought "Oh no!" Hope you have a speedy recovery! Like Mel, I wish I could help you out in some way.
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General Update 1 month 4 weeks ago #68780

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 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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Thank you all for your kind thoughts. I really appreciate them.
Yes it would be a lot easier if my husband was still with us. Yesterday would have been our 42nd wedding anniversary.

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General Update 1 month 4 weeks ago #68781

  • mrsb04
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  • Diagnosis of ITP in 2014. Ex renal specialist nurse retiring in 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.
  • Posts: 1467
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managed to post that twice too and could not delete so edited to this !!

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General Update 1 month 3 weeks ago #68825

  • Hal9000
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Oh my Anne, that's terribly unfortunate. Having fallen on my hand before, the pain must have been intense. Hope you recover soon.

On a side note. If it were possible, I'm sure that fur-baby would have thanked you. Well done.

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