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Question about treatment course

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10 years 7 months ago - 10 years 7 months ago #49156 by beespectacled
Replied by beespectacled on topic Question about treatment course
Sorry for not updating sooner, my baby was born so I've been in mama fog and busy busy.

He ended up being at an NPlate dose of 10 for a few weeks and with no response. His symptoms are worsening, more bruises, a ton of petechiae, and bleeding gums that are driving him crazy. I think we are both feeling like we've tried just about everything he wanted to try pharmaceutically speaking, and we are out of time to wait before it begins impacting his job security. Splenectomy is scheduled for Friday. As much as it feels like a defeat, I'm trying to focus on the hope that things could be turned around and life may return to some semblance of normal in just a week. His counts are still under 5 so I'm nervous about the surgery. :/

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10 years 7 months ago #49158 by Robert1959
Replied by Robert1959 on topic Question about treatment course
Bee,

I have been watching out for an update regarding your husband and am so disappointed for you both that the treatments haven't worked. I really hope that his operation is safe and successful.

Congratulations on the arrival of your new baby
Robert

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  • 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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10 years 7 months ago #49161 by Sandi
Replied by Sandi on topic Question about treatment course
Congratulations on the baby! I'm sorry that nothing has worked for your husband. He gave it all a very good shot. Good luck with the splenectomy; please let us know how it all goes!

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 7 months ago #49246 by EmilyK
Replied by EmilyK on topic Question about treatment course
Bee,
I hope your husband's surgery went well. Keep us posted.
Emily

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10 years 7 months ago #49527 by beespectacled
Replied by beespectacled on topic Question about treatment course
Surgery went very well, they got both spleens out and minimal bleeding. He started improving symptom-wise almost immediately. His awful gum bleeds and extensive petechiae cleared up literally overnight.

His hemo said within 2 days his counts should go up significantly. That hasn't happened. The day after surgery they were at 13, then he was released on day 2 at 11. A week out he was up to 17, and now at nearly 2 weeks he is at 25. His doc seems disappointed with these numbers. I am happy to see him solidly in the double digits but the slow climb is disheartening given what she has told us.

It seems like those who have gone on the have long remissions and/or normal counts post-splenectomy were seeing much higher counts by now. Does anyone have any insight on that?

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  • 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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10 years 7 months ago #49532 by Sandi
Replied by Sandi on topic Question about treatment course
Bee:

Unfortunately from what I've seen, the patients who end up with long remissions usually see counts skyrocket quickly after the surgery, sometimes to a million or more. Counts slowly drop then to a more normal level. I'm sorry that didn't happen. Generally, I seem to notice that those who seem refractory to most treatments also do not have much success with splenectomy. When a person is at that point though, I can understand why you'd go for that last resort.

However, that does not mean that he won't stabilize at a safe number. Sometimes that can happen when you least expect it. Don't give up hope. We've had some people who have had numbers rise months after the surgery, especially after trying a treatment again. Keep us posted, okay?

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10 years 7 months ago #49534 by beespectacled
Replied by beespectacled on topic Question about treatment course
That's kind of what I thought. It is frustrating because I've suspected all along splenectomy wouldn't work and the hemo just blindly thought it would be a magic fix. I told the Mr. that if this doesn't get him to something stable I very much want him to switch to the Mayo Clinic doc, if for no other reason than I just want someone who gets ITP a little better.

It helps that we already have been playing the "what if splenectomy doesn't help?" scenario over in our heads, but if he doesn't soon get into a higher count range longterm then we are going to have to make some big life changes as he won't be able to continue at his job. I think he's very frustrated that he gave up an organ and it doesn't appear to be working, but the clock was ticking.

Trying to focus on the short term gains at least and keep a positive outlook about the future. He LOOKS so much better right now.

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  • 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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10 years 7 months ago #49535 by Sandi
Replied by Sandi on topic Question about treatment course
Bee:

I know it's frustrating, but at least you won't ever have to wonder whether or not the splenectomy would have worked. Plus, he could still benefit from it. I can't believe there are still Hemo's out there who put so much faith in it. I wish there was a way to get the word out....things move at a snail's pace with ITP info. The doctor's just don't seem to keep up with what is current or heck, even within the last few decades.

Give it some time. You never know what tomorrow holds and if he looks better, that's a good thing in itself!

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 7 months ago #49537 by EmilyK
Replied by EmilyK on topic Question about treatment course
Bee
Thanks for taking the time to update us. You have alot on your plate. Hopefully his platelets will still high enough to keep him symptom free and able to work.

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10 years 7 months ago #49538 by Robert1959
Replied by Robert1959 on topic Question about treatment course
Thank you Bee for keeping us informed - I am very disappointed for you both and unfortunately I cannot give any advice on his situation. I hope that he eventually achieves a stable count, remains symptom free and is able to return to work.
Robert.

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10 years 6 months ago #49747 by beespectacled
Replied by beespectacled on topic Question about treatment course
Another week, another round of bad news. His counts were 7 today. To say he is disappointed would be a massive understatement.

His hemo is having him take the Promacta that (finally) arrived today after a lengthy wait from the insurance company. Mostly I think because it's here and they figure what the hell. She also wants to put him back on steroids. She said give that two weeks and if he hasn't stabilized she wants to move to vincristine. He told her he doesn't want to do that because of all the negative side effects, and she said no one ever has those. I don't think I believe that. She didn't want to try Dapsone or CellCept for some reason. She also stressed how very rare it is for someone to be as refractory as he is.

I'm having him make an appointment with the other hemo we did a consult with a few months back. I feel like he has a better grasp on the newer therapies.

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  • 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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10 years 6 months ago #49752 by Sandi
Replied by Sandi on topic Question about treatment course
Bee:

I'm so sorry. What a disappointment.

We had some people here years ago who used Vincristine and they did end up with permanent neuropathy. Not pleasant. It also very rarely works. If it did work well and there were no side effects, I'm sure we'd see more of it being used. I am one who has had damage from a few harsh meds and if I had it to do over again, I wouldn't.

Promacta is a good choice for now and I would definitely see that other Hemo!

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10 years 6 months ago #49754 by Robert1959
Replied by Robert1959 on topic Question about treatment course
Bee,

I feel for both of you, the suffering and stress must be taking it's toll.
I also had the Dapsone treatment but it did not have any effect on my platelets. It was the one treatment that my Hemo said in hindsight she would not have done as I think it created a problem with my blood oxygen levels. Thankfully they returned to normal when I was taken off it.
I will keep my fingers crossed that the Promacta works for him.
Robert

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10 years 6 months ago #50003 by beespectacled
Replied by beespectacled on topic Question about treatment course
He transferred care today to the doc we saw at the Mayo Clinic a few months ago. To say I am relieved is an understatement. It is so nice going to an appointment and feeling like we don't know more about his condition than his doctor does.

He didn't have anything good to say about Vincristine so I believe that is fully off the table. YAY! If I'm remembering correctly, the plan for now is a couple more weeks of Promacta, adding in some prednisone starting today. If that doesn't work, he wants to try cyclosporine. He mentioned some other drugs as possibilities for down the road, and also is contacting a friend of his who is working on the fostamatinib clinical trial to see if my husband would qualify.

Still no magic answers or fixes, but I'm so happy to feel like we are in much more capable hands.

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  • 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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10 years 6 months ago #50006 by Sandi
Replied by Sandi on topic Question about treatment course
Bee, that is good news in itself. Getting the best treatment is a step in the right direction. For what it's worth, I like what he had to say.

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10 years 6 months ago #50146 by beespectacled
Replied by beespectacled on topic Question about treatment course
152!! Impromptu dance party happening at Bee's house!

I know it's only one draw and not necessarily going to be long term but it was a long, hot, dry spell without good news, so we are just going to enjoy this moment for however long it lasts.

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10 years 6 months ago #50147 by Robert1959
Replied by Robert1959 on topic Question about treatment course
That is great news. I hope that his count continues at that level.
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  • 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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10 years 6 months ago #50153 by Sandi
Replied by Sandi on topic Question about treatment course
Wow! Great news! Is that with no further treatment after splenectomy?
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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 6 months ago #50166 by EmilyK
Replied by EmilyK on topic Question about treatment course
That is outstanding!
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10 years 6 months ago #50172 by Winnifred
Replied by Winnifred on topic Question about treatment course
Little behind here!

First off congratulations on the new baby!

Did I miss the party? Hope you still have good counts!
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10 years 6 months ago #50173 by Rob16
Replied by Rob16 on topic Question about treatment course
Congratulations2 !
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10 years 6 months ago #50194 by beespectacled
Replied by beespectacled on topic Question about treatment course
Sandi: No, that's with meds.. He was only on that for three days before the CBC though. Wednesday he had a draw at 11, Friday he started the 80mg prednisone and they bumped Promacta to 75mg. Monday the CBC was drawn.

Thanks everyone. We are crossing all our parts it holds.

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  • 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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10 years 6 months ago #50198 by Sandi
Replied by Sandi on topic Question about treatment course
Okay. Still good news! I can't remember, but did they try Promacta before the surgery? Be careful the counts don't skyrocket. There's been a lot of that going on here lately. I hope the next CBC is soon.

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10 years 6 months ago #50226 by beespectacled
Replied by beespectacled on topic Question about treatment course
Sandi: He had been on NPlate before the splenectomy but not Promacta. We had wanted to try Promacta but the insurance company held it up for months so it didn't arrive until after the surgery. I took your advice to heart about the high counts and made him go for another CBC today because the new hemo doesn't have him scheduled for labs for another week. Just want to make sure all is well. I hope we don't have to wait all weekend for the results because I'm on pins and needles with this one.

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  • 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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10 years 6 months ago #50232 by Sandi
Replied by Sandi on topic Question about treatment course
It will be okay. Let me know what the count is.

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10 years 6 months ago #50261 by beespectacled
Replied by beespectacled on topic Question about treatment course
202! Right in the Goldilocks zone. :)

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  • 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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10 years 6 months ago #50268 by Sandi
Replied by Sandi on topic Question about treatment course
Not too bad, but counts should be in the 50k mark with Promacta. Hopefully the dose will be adjusted so he can maintain the target. Better than single digits though!

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  • EmilyK
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  • Diagnosed jan 2015 at age 50 with 13,000 platelets.
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10 years 6 months ago #50272 by EmilyK
Replied by EmilyK on topic Question about treatment course
Bee
That is wonderful news. Such a shame that he had to suffer for so long before the promacta was tried. Is he off the prednisone?
Emily

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9 years 11 months ago #52920 by beespectacled
Replied by beespectacled on topic Question about treatment course
Six months of stable counts. They started tapering his Promacta from the max dose a couple of weeks ago. They're still holding steady, so that's the good news.

Bad news came yesterday. He's been having hip pain and limping for a couple of months and nothing was helping. We mentioned it to his hemo and they scheduled an MRI. MRI results came back yesterday and he has AVN, presumably from all the steroids last year. Both femur heads have partially collapsed, so it looks like he's in for a bilateral hip replacement surgery. Just when we were starting to breathe again...

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9 years 11 months ago #52925 by Rob16
Replied by Rob16 on topic Question about treatment course
Mrs. Bee, I am so sorry to hear such bad news!

Ellen had both hips replaced. Her recovery has been 100% with no loss of range of motion. Her doctor used resurfacing arthroplasty, which preserves most of the femoral head. When performed by a highly skilled surgeon, it can last substantially longer than conventional hip replacement, which is especially important for a young patient. Here is a link to a study showing that resurfacing can be highly effective:

Resurfacing arthroplasty of the hip for avascular necrosis of the femoral head: a minimum follow-up of four years.
www.ncbi.nlm.nih.gov/pubmed/20595108

I spent many months on line learning about resurfacing, and would be happy to share what I learned. Feel free to private message me if you are interested.
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The Platelet Disorder Support Association does not provide medical advice or endorse any medication, vitamins or herbs. The information contained herein is not intended nor implied to be a substitute for professional medical advice and is provided for educational purposes only. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment, discontinuing an existing treatment and to discuss any questions you may have regarding your unique medical condition.