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Please advise, facing tough decision 9 years 4 months ago #34568

  • Kjenkinsap
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Update on my wonderful Cam:

He had whinro yesterday on a 30 min drip and so far no side effects. He also had bone marrow aspiration and since it was at children's hospital they put him out. So with the anesthesia he slept for about 6 hours afterwards. So far he seems to be fine. This doctor actually checked for h pylori and found evidence in blood. So a stool sample will be collected. I don't know why previous hematologist didn't check for it. I know cause of illness doesnt change that he has it but it does make us feel more grounded in an illness that has so many what ifs. His new doctor said that if there is evidence of it in his stool then he will give him antibiotics and then cam might respond better to treatment methods since his body won't be fighting an infection too. So for once I'm crossing my fingers that my son has a sick tummy. Weird. Thanks so much for all the kind words and advice. Hopefully his CBC and kidney function look good on Monday.

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Please advise, facing tough decision 9 years 4 months ago #34569

  • 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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I'm glad it went well. I hope he gets a good response!

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Please advise, facing tough decision 9 years 4 months ago #34629

  • Kjenkinsap
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Well it is Monday and Cam never had a negative side effect so we are so grateful. His GP office called and said his bilirubin, bun, and creatin all good so yeah. His platelets were 42. I know that is a safe # but I'm not sure what is a good response to the whinro. I'm waiting for his hematologist office to call and discuss. I'm not sure when next blood draw is supposed to be. His old hematologist had him going two times a week. Personally I know 42 is safe for his lifestyle right now so I say let him rest. Does anyone know what a good initial response to whinro is? He went from 31 to 42. Doesn't seem worth the risk. He went to the beach yesterday. It was lovely.

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Please advise, facing tough decision 9 years 4 months ago #34637

  • crystal lee
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Hello-

43 is not a bad count, but I can understand your frustration!! The first time my son had Win-rho which was actually his first treatment ever, he rose from below 1 to 20's but started dropping within 12 hours :( The 2nd time, 0-3k...

My son's count would rise from 0-3 to high teens maybe 20's after IVIG, but his Dr's didn't feel that was a good enough response to continue using it.

I hope you (he) finds something that works..I know how frustrating this is, Good Luck!! <3

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Please advise, facing tough decision 9 years 4 months ago #34640

  • 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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Kim:

If I remember correctly, the peak response time for Win-Rho is 7 to 10 days, so he's not at the point yet where he should be at his highest if he responds. Having a count done on Friday should give you a better idea. A good response would be counts in the normal range - 150k to 400k. A good response would also mean that he'd maintain the counts for several weeks or months....enough to make the treatment time worth it.

Not having side effects is great! Now if he would only get a good response, you've found your treatment.

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Please advise, facing tough decision 9 years 4 months ago #34643

  • Kjenkinsap
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Thanks guys, I know I have to keep it in perspective. I'm a very controlling person and I like order and I like to fix things. In my job as an occupational therapist with kids I solve problems all day. Sandi you are right it is 7-14 days peak time so I will keep my fingers crossed. He starting to lose his patience and wants to get a job but how do you tell a brand new employer you need so much time off. Even at 43 he's still having bloody noses and bruising so it's very frustrating. But we thank God and his medical team that he didn't have any nasty side effects. :)

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Please advise, facing tough decision 9 years 4 months ago #34647

  • 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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Kim:

I'm in the middle of occupational therapy myself and the one thing I have learned is that I must have patience because some medical issues cannot be solved in a day. Some things never get completely fixed but they can get better in time either by some improvement or learning to adapt. ITP is the same way.

The appointments will taper off in time. That happens to all of us at first. I'm sure your son can find a job where he can schedule his appointments either on his days off or in between shifts. I managed a full time job by making appointments either first thing in the morning or at the end of the day. I was a bit late for work or left work a bit early, but did manage to not miss whole days unless I was getting Rituxan or something. Even then, I didn't miss a whole lot of work. You learn to fit it in.

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Please advise, facing tough decision 9 years 4 months ago #34650

  • jeffrey71
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Hi Kim!

My counts are usually around 30 to 40 and I have never had any symptoms. I do anything that I want to do! Marathons, triathlons, biking, etc. Never an issue. I would just wait and see what develops. I will issue a prediction for you, that very soon your son will not have an issue. I think your new doctor is looking in the right directions. Please keep us posted! Take care and tell your son that we are all pulling for him (and you Mom!)! ;)

Jeffrey

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Please advise, facing tough decision 9 years 4 months ago #34723

  • tamar
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Kim,

Check to see what dose Cam received. For my second treatment, when I was still pretty naïve, I thought the bag looked a whole lot smaller than the bag from the first treatment. It turned out someone had dropped a zero and I got 350mcg instead of 3500mcg. It didn't do anything for my platelets to get 1/10 dose!

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Please advise, facing tough decision 9 years 4 months ago #34726

  • DeeDee Marie
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Hi Kim,

I've been following your posts, too, and agree with Jeffrey. It sounds like you got a great doctor and he's on the right track. I went through the same thing with my last episode of ITP; way too many blood drawls and doctor appointments. Before long, I think your son will be back to doing more things and get settled into his senior year. We want you to know that we are all wishing the best for him and for you, too.

Good luck!
Dee Dee

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Please advise, facing tough decision 9 years 4 months ago #34736

  • Kjenkinsap
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Thanks again everyone. There are no words to describe the gratitude I feel for all of the support. This has all been so strange. Cam described it as feeling like he is walking through a maze and doesn't know what's around the corner. So yesterday we had a great talk in the morning, he told me what his wishes were and then we spent the day shopping for his birthday present and going to the movies. We took a break from research and chilled. It was fabulous. He seems to be feeling okay. He did get a new big bruise yesterday but we are keeping it in perspective, he is a teenager after all and got bruises prior to itp. :) I read him everyones comments and he said thank you. We are feeling positive that tomorrow's numbers will be better. So again, thank you so much. It is so nice to get advice from people who understand the illness. I feel like I'm constantly repeating what the drs say to everyone in my family. Kim

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Please advise, facing tough decision 9 years 4 months ago #34792

  • Kjenkinsap
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THANK YOU!!!

Listening (reading) all the support and advice has helped put things in perspective for Cam and I. Today his platelets were 52! His hemo said he was hoping for over 100 with the whinro but he will take it. A month ago 52 would've freaked me out, but now I see it as a Godsend! He can even play baseball at 52! We are hoping they will continue to rise. And his favorite news was that he can wait a week for his next CBC and if at 60 he can wait two weeks the next time! Whoo hoo! I hope everyone else is having such a good day! Kim

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Please advise, facing tough decision 9 years 4 months ago #34799

  • 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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Good news, Kim. I hope he can maintain it!

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Please advise, facing tough decision 9 years 4 months ago #34814

  • jeffrey71
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Good news! It made me smile!

Jeffrey

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Please advise, facing tough decision 9 years 4 months ago #34816

  • DeeDee Marie
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Kim, this is great news! And, this has been since he had Whinro. I'll say a prayer that he will continue to do well.

Dee Dee

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Please advise, facing tough decision 9 years 4 months ago #34820

  • Jacchab
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What fabulous news! So happy for you.
Jac

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Please advise, facing tough decision 9 years 4 months ago #34825

  • Wwfbader
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Hello,
I was the same age as your son (17) when I was first diagnosed in July 2012 (my thread here pdsa.org/forum-sp-534/5-newly-diagnosed-a-frequently-asked-questions/26190-newly-diagnosed-extremely-depressed.html#26190) and I was starting University. They gave me steriods which I didn't respond to and IVIg - which is only a temporary fix. The doctor recommended a spleenectomy, which I have chosen not to do after finding out it was only a 70 percent success rate. After months of falling into a hole of depression, in January; I decided to read up a lot on ITP and what I could do. I started following holistic natural treatments - calling a naturopath in my area, who ensured me that there was a big possibility that I could fall into remission. Now I personally chose this direction, I am a huge skeptic and am very cautious but started believing through naturopaths because of a family friend who is now in remission from Chrohn's disease. Naturopaths don't give you magical herbs of some sort, they find out what your son lacks in nutrition and build his immune system up from the crapper basically. I used to eat processed foods ALL the time prior to getting ITP - now scientists have found that autoimmune diseases do come from that. Naturopaths also find your food intolerances (i never knew i had wheat,dairy,corn, and nuts as an intolerance), and just clean your body and let it heal by itself.

Right before I started this, I had to unfortunately resort to Rituxan because of Doctor's pressure and the fact that my platelets were dropping like flies, that didn't help either. After the naturopathic diet starting in january till now, I have had 3 rounds of IVIg treatments when my platelets were low but have seen a huge improvement platelet wise. No I am not in remission, with Naturopaths it takes time it's not an immediate effect but I am feeling much better. My doctor appointments used to be a weekly basis and now are every 3 weeks, yes it doesn't seem much but really it's only getting better from here. Last week I was supposed to recieve IVIg once again, because it's been a while since my last check up and it was OBVIOUS that I was gonna get it, to my surprise my platelets were above the danger zone and I did not need IVIg treatment :), so i'm free for another 3 weeks till the next check up.

I would suggest you go through a naturopath because I personally believe you need to take measures to heal yourself, the harsh medicine they will give your son will only make his son worse.

ALSO he is going to have an extremely tough year, because I did. I had to start university in a different country, I had no friends, really it was the tip of the iceberg of how much it sucked. You need to help him from falling into a hole of depression and let him really focus on his studies. Don't let ITP take over your son's life. I really hope your son and I find remission soon, I will be turning 19 in October.

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Please advise, facing tough decision 9 years 4 months ago #35007

  • Kjenkinsap
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Thanks so much once again. Blood work today showed RBC at 2 (result of whinro?) and platlets back down to 12. Grr. Hemo wants him in at 830 tomorrow (which is also his 17th birthday) to discuss next options. He is not recommending splenectomy either which I prefer.

As for a neuropath I fully agree seeking out help and I've taken him to one so far but he was more an herbologist and wanting to sell us stuff. I am vegan but my boys eat meat. I don't serve them any processed food and neither of my boys eat fast food. They don't make perfect food choices but generally are more natural eaters. I believe there is a link between all of our chemicals in our food and products and illness. I'm glad you suggested it, will help us gain more control.

Thanks also for the advice on the depression. He's pretty angry right now. I'm trying to give him his space to be ticked off but not let him wallow in it. We've been gone all week working on a movie so that has been a great distraction for him.

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Please advise, facing tough decision 9 years 4 months ago #35014

  • tamar
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I've not had a doctor focus on RBC, the hemoglobin number was what my doc cared about with WinRho. My hemoglobin hovers around 14, with WinRho it would drop to 11-12. I believe under 10 is considered anemic (others can chime in). Good luck tomorrow!

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Please advise, facing tough decision 9 years 4 months ago #35016

  • Kjenkinsap
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Thanks Tamar, he focuses on hemoglobin too but we noticed a week after whinro RBC dropped a lot so were watching. It's Cams bday tomorrow so we are counting on somehow that bringing him luck. We know he won't be sitting there for 8 hours with ivig since we tried that without much success. He made it 4 days before dropping to single digits. My older son says I read too much but I am reading everything I can get my hands on. I know eventually it will be fine. I reminded him today that he was born 2 months early at 2.5# and grew to an intelligent and strong 6'3" young man. He was strong then and he is now.

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Please advise, facing tough decision 9 years 4 months ago #35019

  • Jacchab
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Hi Kim,
In regards to reading too much, I am a firm believer in knowledge is power.

When my daughter and I would have an appointment, if something new got thrown at us, I would get flustered and forget to ask certain questions. Now (since finding this site) I know some of the questions to ask. It puts me in much more of an emotionally stable place to deal with new treatments etc. And happy 17th birthday to Cam for tomorrow. :P

Jac

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Please advise, facing tough decision 9 years 4 months ago #35025

  • DeeDee Marie
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Kim,
I'm really sorry that Cam is having so much trouble right now. Try not to worry too much as sometimes it does take a while before it gets better. I really think that the Whinro and his platelets dropping probably brought down his RBC. This happened to me before, too. I really had to concentrate and find foods high in iron to eat for quite a while. I know black beans have a lot of iron. I would read the labels at the supermarket to which foods had the iron (I'm not a big meat eater).

I will say a prayer that Cam starts to feel better real soon. And, good luck at the doctors.

Dee Dee

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Please advise, facing tough decision 9 years 4 months ago #35028

  • Kjenkinsap
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As usual thanks everyone. I wasn't worried about RBC dropping, I figured it was the whinro and grateful it didn't go further. He woke up to the house decorated for his birthday as usual and we will celebrate as usual with a stop at the hospital first. A blip in life.

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Please advise, facing tough decision 9 years 4 months ago #35033

  • dru
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  • I developed hemolytic anemia in 1999 and ITP in 2005. Treatments have been splenectomy, prednisone, IVIG, and Rituxan.
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Kim,
You sound more relaxed and in control of the whole situation. It is hard with ITP, it defies our OT skills of analyzing and finding solutions. It is more of a wait and see what works to get you off the roller coaster.


Hope he enjoys his birthday celebration!

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Please advise, facing tough decision 9 years 4 months ago #35035

  • Kjenkinsap
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You are correct Dru, this is counterintuitive to the way I think. Especially because my specialty is in are of sensory integration and I focus on figuring out difficulties.

I really like our hemo: today's appointment resulted in giving us three recommendations
- two weeks or prednisone followed by cellcept which we will not be doing as cam has horrible time swallowing pills and
Had a bad reaction to prednisone already.
- promacta
- Nplate

We have to figure out and weigh the pros and cons. They gave us a lot of information on all three options and Cam has asked to celebrate next two days without talk of meds or treatment and we will figure out on Sunday and call dr on Monday.

Anyone else tried these? I will be researching this website for these topics later after he goes with his friends to the movies. I have already read what it says under treatment options in this website but read along with everything else when he was first dx.

Happy Friday everyone!

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Please advise, facing tough decision 9 years 4 months ago #35058

  • Ann
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I can't swallow tablets either except for prednisolone which are very small. When I had CellCept I had it as a liquid in a bottle with a weird insert which a syringe fitted into. I drew up the required amount and squirted it into my mouth.. job done.

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Please advise, facing tough decision 9 years 4 months ago #35059

  • Kjenkinsap
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Ann thanks, I did ask the doctor what we can do liquid. He's being an extra in a movie today so today is a good day.

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