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Timothy's count 22k 13 years 2 weeks ago #59

  • lucidawn
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So, we went to the hemonc today. First of all his CBC today was 22k today, so we lost 10k since Tuesday night. Not unexpected, but I thought it might possibly have dropped more.

I had called the hemonc last night to let him know ahead of time that Timothy was not taking the Promacta. So, he asked Tim about it and Tim says he hasn't taken it for a long time. Its hard to know what the truth is in this regard-he has a tendency to lie about things when confronted. I think the hemonc was relieved to find the reason the promacata was not working was that he was not taking it.

So he gave Tim some options. Splenectomy, which he says isn't likely to be curative but might make the ITP more treatable. He says splenectomy is "roughly parallel" to the response to IVIg. Though he doesn't get a lasting response to IVIg, any response is considered "a response". I tend to think it will match his gramdma's response. Not curative, some remissions and responds to steroids. She also has been in remission for over a year from one infusion of Rituxan. I wonder if he would respond better post splenectomy.

The other option is other meds. Imuran, cyclosporin, and cellcept as a cocktail. The hemonc wants Tim to think about it and let him know what he wants to do. Oh, and one other option is to live with low counts and intervene with IVIg when he has symptoms, which as he said would seriously impede his lifestyle.

I think that's it for now. He at least has a few more days of double digits. I told him to enjoy his double digits while he has them.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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Re:Timothy's count 22k 13 years 2 weeks ago #75

  • tacmom
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I am sorry to hear Tim's counts went down again, but I know what you mean...nothing is unexpected once they've been going through low counts for a while now. What a hard decision that you both have to make coming up...a splenectomy or something else.

We're starting to head down the same pathway too where some things are not working anymore. I just don't know when you can say it truly doesn't work anymore though. Because Prednisone worked really well for Caitlin last time and this time, it had no response at all. I don't know if this means she won't get a response if she goes on Prednisone again.

I hope Tim is remaining in somewhat good spirits. If this hadn't hit us smack in the middle of competition season, Caitlin would be "ok" with all of this. We need her counts to be low in the summers and high during the year, but of course...it's just the opposite! Continue to hang in there! I am hanging on only because we're not out of options yet..
Pauline-mom of Tiffany (age 14) and Caitlin (Chronic ITP, UCTD -age 13)

Diagnosed: 03/02/07
Current count (Feb 2011): 138
Current dose: 1 mcg/kg

Treatments tried: IVIG (doesnt work), Prednisone (sometimes works with high doses), Nplate (2 years on it-worked, but had to be taken off due to...

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Re:Timothy's count 22k 13 years 2 weeks ago #76

  • Ann
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Was Caitlin taking pred straight after stopping the Nplate and not getting a response? I ask because reading up on Nplate, I see that when on it the body's natural TPO is suppressed so when you stop the Nplate some people won't make platelets at all. And of course if you're not making platelets there are none for the pred to preserve. That happened to me on missing a dose of Nplate and crashing, the pred did absolutely nothing.

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Re:Timothy's count 22k 13 years 2 weeks ago #95

  • lucidawn
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I'm sorry about Caitlin, too. Its so hard on them, and on us watching whats happening with no power to change it. I agree that its likely the initial phase of coming off the NPlate causing a problem with platet production right now. Maybe she will start making them and then pred will work again.

I am going to take Tim to his pediatrician. Interestingly, today when I came home for a nap I had a dream that his ped was talking to him. He's a real joker and very good with kids(and Tim really like him).In the dream the ped came out and started joking with Tim and saying, 'Boy,why aren't you taking your medicine?" So I asked Tim, "do you feel like a kid or like we treat you like a kid with your meds" and he said no. I told him about the dream and he said, "I've been really wanting to go see Dr. Gunter lately. Lets make an appointment." So, maybe his ped can talk some sense into him. He's the kind of ped that makes paper ties and wears them to work,lol. He's an excellent Doctor too. I told my boys we've given him great training with MS, Congenital Heart Disease, Asthma, and Chronic Refractory ITP.

Anyway, I often have these sorts of dreams that help me make tough decisions. Seems to be God's major way of guiding me directionally.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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Re:Timothy's count 22k 13 years 2 weeks ago #101

  • Stangie11
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I like to pray, so I will add Timothy to my list :) I was wondering if you wouldn't mind answering a few questions for me. I am Angie and I had a splenectomy 8 years ago. It sent the ITP in remission for 8 years and now it is back. Steroids work, but I am questions Rituxan. In your opinion, is Rituxan safe after a splenectomy and do you think a low dose steroid is okay long-term. I realize you don't have ITP, but since you have two family members with it, you are like an expert in my book. Has your Timothy or your mom tried danazol? Do your family members have any other autoimmune disorders? Thank you for your time.

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Re:Timothy's count 22k 13 years 2 weeks ago #104

  • lucidawn
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Hi Angie,
All I can share is our experience. Timothy's grandma has been splenectomised for 46 years and about two years ago received Rituxan for her Chronic ITP. She has had no problems with it and is in remission. Not everyone goes into remission through rituxan, but it can happen. She also used steroids her whole life, and so far does not seem to have long term negative affects. There are side effects and bone loss issues if you take it every day for a long time, but short burst to bring up counts is not the same thing. I personally don't like steroids, if we can avoid them, but we've used them alot. Tim has some significant tooth decay, and i think its from the steroids. We have not tried danazol. The hemonc skipped right over that one. We go on the Imuran/Cyclosporin/Cellcept next. We also actually have three family members with Chronic ITP. Rare, and funny that they say its not hereditary. I'm surprised we haven't been approached for a study.

As far as autoimmune diseases, I have hypothyroidism caused by autoimmune disease (hoshimoto's thyroiditis). That's all for me. Tim's dad has type 1 diabetes that he aquired at age 29, which is very, very rare. He is insulin dependent. This was more than likely caused by an autoimmune distruction of his pancreas. Tim's dad's family also has Lupus in the family. My mom is also hypothyroid. Oh, and my other son has Multiple Sclerosis-also an autoimmune disease.

I hope you find the treatment you need. What are your counts like? Are you refractory to treatments? Oh, one other thing. My personal opinion is that Tim's grandma responded so well to the Rituxan partly because of her splenectomy. She only had one infusion and responded immediately. Tim's uncle (professor of hematology at eastern carolina) agrees this may be the case. In fact the hemonc says that being splenectomised sometimes makes refractory itp more treatable, if its not curative.

Hope that helps.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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Re:Timothy's count 22k 13 years 2 weeks ago #110

  • Angel85
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  • I am 27 years old from Australia and I have T.A.R Syndrome. My email address is not showing on my profile for some reason so it is blossom_242@hotmail.com for anyone who wants to send me an email.
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Sorry to hear they have dropped again, i'll be praying they go up for him next time he has a count done.

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Re:Timothy's count 22k 13 years 2 weeks ago #127

  • alisonp
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Hi Donna,

I thought that your post about Tim not taking the promacta was really funny - only because I can so imagine my 16 year old doing that too! Its quite reassuring to know that he isn't alone. Teenagers are a law unto themselves aren't they? It will have been a relief to your doctor to know why it was having so little effect.

Your dream was really interesting too. I always think that when you are in that dreaming phase you can process information better so you get better answers. Unfortunately I dream about totally random things so it doesn't work for me!

I hope Tim is continuing to be ok with his count. We are going back to the hospital on Monday to get Dougie another count, so I am keeping my fingers crossed

Ali

P.S. I am not liking this new format for the discussion board - it seems much slower to go through posts. The photo uploading is interesting though - you look so young!

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Re:Timothy's count 22k 13 years 2 weeks ago #128

  • lucidawn
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Ali,
Thanks for the encouragement. I always think my kids are some kind of wild freaks from the Amazon or Jupiter or something. Being a single mom, I think I tend to double up my guilt and think everything is my fault and "what lovely monsters I've raised, lol." So, he's not being a freak, that's nice to hear. I know it, but its nice to hear others says, "he's a normal teenager". The hemonc was definitely relieved, I think, but irritated that Tim would not give the promacta a chance to work. He did keep it low key, which is essential with Tim, who bulks and will completely rebel if directly confronted in a negative manner. He handled it well (the hemonc). I figured they have dealt with this before, so I kept it low key and called them the night before to give them a heads up.

As far as the forum, it does take more time to sort through posts, that was one of the first negative things I saw. But I think some of it is that we are used to being able to see all the topics at once and them loading quickly. Hopefully as we get used to it it won't be so difficult to deal with. I do like that the posts come to my email, so if I dno't want to log in, I can just read the thread replies on my email. Kind of a nice feature.

Good luck with Dougie and his cbc. I hope he continues to be on the rise. Even short dips don't mean he isn't on the rise. It happens.
Donna Ingold
Mom to Kelly 22, Karen 21, Josiah 19 (Congenital Heart Defect, MS), Timothy 17 (Chronic Refractory ITP-dx 5/03, Asthma), Isaac 15(blind left eye).

Allergic and Refractive to WinRho
Shortlived small response to IVIg(a few days of 30k or less).
0-1k since September 2010
No response to...

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Re:Timothy's count 22k 13 years 1 week ago #182

  • Stangie11
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Thank you. I am new at this, so I am not even sure what refractory means. Last April I was a 5 and used steroids for till Sept when my count stayed above 100 all by itself. In December it was 20 when I caught it and started on steroids again. It sounds like a game that I am going to have to learn how to play, so I appreciate your help. One doc wants danazol and the other wants Rituxan. So, I am trying to ask as many questions of this group before I decide. I realize that I am blessed to be sitting at my counts compared to some others. I prayed for Timothy all weekend, and for your peace. I thank God that you are one tough cookie. I guess I was worried about the effect that Rituxan would have on my immune system without the spleen, but I feel better after hearing about your mom. What is IVIg?

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