6-MP ZERO ITP STILL THE FRONT RUNNER

Hi Everyone

I had Zachary sit down and read all of your replies to him from my other post " Need Help dealing with ITP", he will be responding to you soon as he has assured me and I would like to thank you for your kind words. Zachary is currently at Childrens today recieving yet another IVIG as his platelets went fron 43 to 18 to 21 to 2 over the past week. My wife Betty is there with him while he completes another fine day off to deal with ITP with a second dose tomorrow and a transfer to the adult Clinic on Thursday. Can anyone tell me the difference between Rituximab and N-Plate? From what I understand N-Plate is a prolonged treatment that does not create any change of cure, is Rituximab the same. By the way Erica if you read this we are being tranferred to the Masonic Memorial Building, I think you had mentioned that to me awhile ago.

Thanks again all of you
Jeff Engen

Jeff:

The main difference between the two is that one is considered a maintenance drug and the other is not. N-Plate is an injection given once a week to maintain counts, and the goal is to maintain counts above 50, not normal counts.

Rituxan is an infusion that is given once a week for four weeks. It takes about to 6 hours. The goal with this one is to achieve remission with normal counts.

Side effects for both are few unless the person has a strange reaction. They are nothing like steroids though.

Thanks Sandi

I sure hope Zacks new doctor will have some good news for us, the good news is we can begin lowering the dose of Prednisone and stop with the 6-MP, Hopefully the Amacar will be next to go.

Jeff

Hoping the best for you!!

Thanks Dean

I hope things are going well for you also.

Jeff

My count is 157k, down 20k since the last check about a month and a half ago. Iron is pretty low at 36. Range is 70-175mcg/DL for men. That would explain my loss of energy lately. Am on Ferrous Sulfate. I just need to remember to take both doses everyday and not forget to or just one!!!!

dean

We just got back from Childrens, Long day at the office for Zack. Have you thought about getting a pill organizer to keep the meds organized, I had to get one for Zachary because we were having trouble with him remembering what he took when due to the amount of stuff he was taking. Zack says hi by the way and hope things get better. I heard we could get to -14 straight temp tonite so be safe.

Jeff

Yeah, we have several pill organizers. I really should start using one. The Furrous pill is the only one I have to take more than once a day. I always remember to take my vitamins. It is brutal out tonight!!! -13 air temp, -35 windchill!!!!!! Supposed to be in the 20's this weekend! I would rather have snow that this COLD stuff.

Hey, Zach. How is it going? Hope you are doing better! Remember, you are not alone in this battle. ITP is a tough thing to accept at first. It does get better, so try not to stress over it. Stay positive.

Dean

Jeff, I'm the one who mentioned Masonic. That's my clinic. My doctor is Yvonne Datta--I like her a lot. Dale Hammerschmidt has been treating ITP for 30 years and I'm not sure how much he still sees patients, but he is on the staff and I'm pretty sure he consults on difficult cases.

Thanks Tamar

Sorry about the confusion. We actually met with Dr. Reding yesterday. They sure do make you feel comfortable, after asking alot of questions as to where we have been with the ITP they put the options on the table, not for my wife and I but for Zachary.

Jeff

I'm glad Zachary got to see Dr. Reding. I think he's one of the busier doctors there, and has been with the clinic a long time. He also focuses on "benign hematology" instead of oncology, which is a big plus in my book.

What did he suggest, Jeff? Or Zachary?

Sandi

Sorry it took so long to get back to you, busy weekend, 2 bloody noses this weekend but they didn't last very long. Zack basically was given 2 options, rituxan or splenectomy.The doctor said that the rituxan would be 4-8 weeks and wait and see, the slpenectomy could be scheduled but I'm not sure when. We will be meeting with the doctor today at 2:30pm. I think Zachary is leaning towards a splenectomy as he wants to get back to his normal self if possible. What are your thoughts sandi?

Jeff

I posted to you in another thread, but not sure if you saw it:

www.pdsa.org/forum/7-treatment-general/21284-treatment-crossroad.html?limit=10&start=10

That is my thought, along with the fact that ITP can sometimes resolve within the first year.

Hi Jeff, I think your first post indicated Zachary had been dealing with ITP for 2+ years. Is that right?

If so, I'd say the rituxan vs splenectomy is a toss up. If you choose rituxan, ask Dr. Reding if a low dose can be administered instead of the standard dose. There's a small amount of research that indicates that a standard dose is more than is needed for ITP.

Tamar

I think I typoed that, Zachary was diagnosed on December 21st 2010 (Not 2009) I missed a year somewhere. Your right Dr. Reding is great, the entire staff over at the "U" are very nice and make you feel comfortable. I just wish this roller coaster would slow down enough for Zack to get off.

I actually just recieved a call from Dr. Reding about a 1/2 hour ago to inform me that upon our visit yesterday and the Blood work Zachary had done we need to now go back to Childrens this weekend for 2 more treatments of IVIG as Zachary's platelets have plummated once again. Unfortunately they tried to get approval from my insurance and could not get ahold of them so he was able to get us back to Childrens to get the treatments. Zachary went from 113k on Monday to 20k yesterday and the doctor is assuming according to his past records he'll be at zero or there abouts by tomorrow (when he plummats it's always quick).

Zachary has made his decision to get the slenectomy and at this point I think he has made the right decision.

Jeff

Jeff and Zachary,

I'm glad Masonic worked out for you and that you got the information that you needed to make an informed decision. Please come back and report on how things go; I look forward to hearing good news from you soon, and then I hope that your ITP journey will be over!

Good luck! Please keep us updated!

Currently at childrens, zack had his 1st of two ivig treatments for the weekend yesterday, I think we were slightly behind the race for the platelet drop as his lower lip turned black from the time the treatment started and got worse throughout the day to complete the day with a bloody nose that continued throughout the night and into this morning. He is currently sitting at the sink spitting blood with his ivig hooked up and cotton in his nose to stop the bleeding. Please stop the madness!

I was sitting here reading the posts this morning and after reading about the journey your family has been having with this illness I just wanted to respond. Actually I sat at my dining room table crying, wanting to respond and yet feeling speechless. I just feel so bad that this is happening for you,your wife and your son.
It must be so scary for everyone, the unpredictability and feeling of powerlessness of it all. But it sounds like there are very good doctors and supportive people there to help your son, that is a positive. Trying to keep focused on the hope that they will be able to get this under control, stop the bleeding and stabilize your son. It is not easy to always see that things can work out when there has been so much upset and like you say "madness" because I agee I have felt those moments of craziness and that I could not handle it anymore but we have this inner strength that comes just when needed most and we get through it.
I am very new to the group, I only joined last week. I was diagnosed with Itp in April of 2010 after suddenly finding massive bruises all over my legs. I went to hospital and my platelets were at 6. I had no experience with platelets so had no idea of what I was dealing with at the time. I understand the fear and panic with dropping counts. My thoughts and prayers are with you, your wife and especially Zack.

Thanks Josh, I hope your journey is not so bumpy, I called the "u" this morning to let the doctor know about zack's weekend, his platelet were at 1 yesterday afternoon, they had me bring him in this morning to get them checked again after all the bleeding this weekend. The doctor would not allow us leave and zack was admitted to the hospital, from my understanding the two ivig treatments did nothing for him. time for the next round. Josh, the people on this site are wonderful make sure you partake in the conversations and ask questions, you will always find some help. I wish Zachary would use it more. Back home now to get Betty and return to the hospital you all have a good night.

Personally, I wish he would have went the Rituxan route. His Spleen is doing it's job so why remove it? Without his Spleen he is at greater risk for illness and continued low Platelets. I hope it puts him into remission and there is not a post later saying it did not work.
Good Luck!!!

Jeff, I'm sorry to hear that Zach is in the hospital, but glad to hear it, too. Low platelets are one thing, but low platelets and bleeding are another. You're in good hands!

Thanks Tamar, thanks dean. Zachary was given 1000 mg of prednisone yesterday and today and can only achieve a 1k, surgery tomorrow. I hope things go well.

Keep us posted! We'll be waiting.

Good luck.

Thanks sandi, surgery at 1:00pm tomorrow. We are seem to be in a hurry and wait mode, I'm not sure what to make of Zachary not getting any boost from the ivig or steroids. They said they may need to give him some platelets.

They probably will give him some Platalets for the surgery being they are that low.
Good Luck.

Good luck to Zach today. Hope the surgery works and he can get normal or almost normal counts.

Just a quick update. Zachary's surgery though long went very well, we got him out of recovery at 9:00pm yesterday, the surgery was performed laproscopically and his spleen was very large according to the surgeon, Betty and I arrived at the hospital this morning just as Zachary was completing his 1st walk. His platelet count is currently 120k. I am grateful to the staff for the professionalism everyone has demonstrated during this process, they are really taking care of him.

That's good - surgery over! Did they say why his spleen was enlarged? That's not common with ITP. I hope he has a good recovery.