Scared-Cant get level above 3

Just diagnosed with ITP. It's been 7 days since my dad was admitted into the hospital, his count at that time was 3,000. Petechia and mouth blisters finally got the old buzzard (kidding) to go to the dr. He's 81 years young with a hilarious sense of humor and a enormous kind heart.  The nurses are going to miss him when he goes home.

Day 1-2 steroids and two doses of IVIG. Diag: possible reaction to new medication
Day 3 Level increased to 7,000 (I will never use the words "we will wait and see" with my daughter as long as I live)  It is not a very nice game to play.
Day 4 Level dropped to 3,000, Diag: first talk of possible ITP. What the hell is ITP?
Day 5 Received 2 units of platelets, but was told that it may be temporary and only last 2-3 days.
Day 6 count was 4,000, Diag: MRI several small brain bleeds.  okay count is 4,000..wait...huh?
Day 7 count is now 2,000,  Diag: your father has ITP. I am now scared, very scared. 

Shock, fear, tears, bad thoughts "don't touch him, he might die". The ITP roller coaster is not fun and we all want to get off now.  Some of my fears have been calmed with all the information and stories that have been shared and can't thank you all enough. WHEN his level reaches 15,000 I will do the biggest happy dance ever!  That will be a sight to see 'cuz I don't dance.

My question is, shouldn't his numbers be increasing and not decreasing with the treatments he has received?  Even a little more than they have? It may just be my ignorance, but I was certainly hoping for at least 10,000 by now. Can he start bleeding more for no reason? I understand the increase will take time but how soon can I expect him to get above 10? 

Any information would be greatly appreciated. This is extremely difficult to grasp and would love any insight to calm the nerves.

If IVIG is going to work it works quickly and takes the count way up. So for your father it doesn't work. So he needs to try something else. Have they said what they will try next? You could suggest Nplate as you need something that works quickly and most of the other treatments can take months to start working. Nplate stimulates the body to make more platelets with an aim of getting a count around 50.

Thank you so much for responding so quickly. I don't believe they mentioned Nplate, but I will make sure we mention it this morning. Hoping for a good day today. We have run out of questions to ask the doctors except, what's the magic number today Doc?

Ann, thank you again.

Lisa

My last dose of IVIG didn't work for me either. I was down to 4K for about three weeks and have gone through a ton of treatments. I am doing Rituxan right now. My last count after my first dose and my N-Plate (which I've been on for a year before my crash) was 40K. I think they are still around that since I've had no bleeding and some of the petechaie and bruises are going away. It can be very frustrating when counts are low for a long period of time. There are many other treatments besides IVIG. Platelet transfusions never do anything for me, only last a few hours. It's really scary waiting for something to work.

Have they done a bone marrow biopsy? Sometimes that is a good idea for elderly patients to rule out other causes of low platelets (such as MDS).

It would benefit him greatly to have a hematologist who is familiar with ITP. Normally, a low count is not always a serious situation but in older individuals, a lower count could be more serious. I agree with Ann's suggestion of N-Plate. It seems to be his best bet right now to get him out of the low zone. Counts should go up with treatments, but not everyone responds to IVIG and steroids.

No Nplate and no bone marrow biopsy. They believe the onset ITP was a seizure med he started to take a month or so ago. His count is up to 3000 this morning and he started his first round of chemo today. I thought that would be further down the road. Not sure if his hemotologist/oncologist specializes in ITP or not, but he seems to have a very knowledgeable team. I had to work today so the report back from my sister is limited.

Can a person say thank you too much? The initial shock and fear is gone from the all the stories and comments I have been reading here. I can say that I get it now. Not happy about it but ready for the long journey of recovery. Your support and knowledge is invaluable.

So my next question is, how can you make an old gentleman on steroids with sleep depravation laugh?

What is the name of the drug they are going to start? Those can take a long time (weeks or months) to work, and sometimes they don't. It could be that the drug for seizures triggered the ITP, but stopping the drug may not change the platelet situation.

Hmmmm....surprised they have not mentioned a bone marrow biopsy and surprised at the treatment route they are taking. This does not mean they are not doing the right things, just that I see it differently. I'm not a doctor, just a person who has been around here (and researched ITP) for 15 years.

How to make him laugh? Good question. It's hard to make anyone on Prednisone laugh! I eventually learned to laugh at myself and all the stupid things I did, but that doesn't help him any.

Finally out of the hospital and into a long term care facility. Friday they started him on his first round of Rituxin. The ole' guy is thankful to be out of the hospital but he misses being spoiled rotten No reaction or symptons yet. Strapped on the seatbelt for the long ride.

I'm confused how they determined it was ITP if he didn't respond to steroids or IViG. What was the basis of the diagnosis?

And....can they give him ITP treatments in the facility? I'm confused as to why they placed him there.

Hi Kittie,
Earlier this year my dad thought he had a couple of TIAs or mini stokes in January. After many tests, it was determined he had seizures, all of this happened over a period of 7 months or so. All throughout this time, the doctors noticed that his white blood count has been on the low side without any change and referred to a hemo about 3 months ago. Platelets have all been fine during this period with little concern about the white blood count.  He was taken off of the TIA meds and switched to seizure meds, Depacote (sp?) about a month or two ago.

It wasn't until a couple of weeks ago, we noticed that the loveable ole' bear was talking funny and we thought he needed to see his dentist. Being the stubborn one that he is, he denied anything was wrong. He waited a week when the "rash" wouldn't go away and he started to get leg pain and finally went to the Dr. We got the call that he may need to be admitted into the hospital, pending labs. Sure enough he was admitted with a count of 3K and here we are.

Dad lives alone but is completely self sufficient with the exception of the seizures, which he has only had two minor/short ones lasting for just minutes. The doctors are concerned with the switch in neuro meds he may pass out and fall, thus the facility. Now with the chemo, we are all a little relieved because he won't be alone. The chemo still doesn't sound like a fun road.

Hi Sandy! I'm not sure if the "facility" (ugh...nursing home) can give Rituxan. Normal blood draws and other meds are given to him at the facility. I believe he gets his treatments at the hospital. My older sister is actually taking him for his 2nd treatment tomorrow.

Tomorrow will be his 2nd of 4 treatments. The first treament seemed to go well with little side affects but I hear that the 2nd treament will be tough. Nervous and anxious for him. As of Tuesday, his count is up to 7K and I'm not sure if that is good but I'll take any increase in numbers at this point.

Again with all my gratitude and thanks. I appreciate you all being here for me and my family.

Don't worry, Rituxan is not really chemo, it's an immunosuppressant which kills off the white B cells. So no chemo side effects of nausea and hair loss. Usually the first dose is the worst so he's through that and should be fine. A count of 7 could be normal fluctuation but Rituxan often takes several weeks to work. It does only work for something less than 50% of people so don't worry too much if nothing happens. There are other drugs to try. I'd seriously talk about Nplate if the Rituxan doesn't work as it's an easy drug with usually no side effects and an 82% success rate.

Like Ann said, the first treatment is usually the only tough one, and it sometimes as you saw isn't tough at all. Later treatments are usually smooth sailing.
Erica

Ditto what Ann and Erica said about Rituxan. Usually once you get through the first one, you're fine for the others.

Low whites too? Still questioning the bone marrow biopsy....

I thought the bone marrow was pretty common when the patient was over 60 and first presenting with ITP. Because certain bone marrow cancers are much more common in older patients I think. Erica

It is pretty standard in that situation. Maybe they want his counts up first? IDK.

A bone marrow biopsy can be done at any count. I had one with a count of 2. Maybe his white count is just always low. Mine has never been normal in all the 6 and a bit years I've had ITP and they've never worried about it. It is protocol to do a biopsy at that age though.

Yes, but having two lows suddenly in an over 60 individual can point to other disorders. It would be better to rule that out. And you're right, it is protocol.

Well hello everyone I don't know what I would do without you all. You have made the scary unknowns of ITP, so much easier to handle...and I'm not the one with ITP, just a concerned family member. Again with my thanks and appreciation.

Treatment #2 went well today. The only complaint from dad is being tired. His spirits are up to even playing a practical job on one of his friends. Nothing sounds better than a good belly laugh from dad telling us his story and almost getting his friend admitted to the facility. Prednisone and all :silly:

I've questioned the bone marrow test in the hospital but Dad dismissed the idea and is trusting the Dr. I also asked about Nplate and I believe that may be the next step if his treatments don't work. His white blood count was low earlier this year, but when he was admitted into the hospital, red and white levels were normal, which was surprising.

Being niave, what other types of disorders could this be with these symptoms? I'll do a some research tomorrow. I am also assuming that his Oncologist/Hematologist would have already ruled out various cancers, or at least I would hope so.

The alternative for an elderly person is myelodysplastic syndrome or MDS where the bone marrow doesn't make sufficient blood cells of any type. So with a low white and platelet count they would want to rule that out. But as you say your father's whites are now normal that isn't going to be it.

But when they look at the blood film or blood smear as it is sometimes called (one is a British term and the other American) with ITP they will see that all cells look normal except that the platelets will be low in number and also all fairly large as they are all new. In a normal person there would be some large and some small older platelets but with ITP as we kill them off early, there will only be larger ones. That is how they diagnose ITP. So presumably they are happy with what they see.

With white cells they are also far more concerned about the neutrophils than any of the others. If the neutrophils are in the normal range then they won't worry if the others are a bit low as that will probably be normal for that person (it is for me). Whites often go up with a bacterial infection and down with a virus, especially flu.

Well, let me tell you the story of my friends mother in law who was in her late 70's. She had low platelets and they did a bone marrow biopsy which came out fine so they called it ITP. She treated with Prednisone and IVIG and counts went up. Six months later, they did another bone marrow biopsy which showed mild MDS. Platelets and red cells started to drop, so they treated with Rituxan. Another bone marrow biopsy six months later showed moderate MDS. She has been monitored and treated as needed and has done very well, but that isn't the case for everyone. Point is....it can develop slowly.

Also, people who have MDS of any degree should not use Nplate or Promacta. A study was recently stopped with MDS patients using Nplate because too many of them were developing leukaemia. Amgen in the UK are now saying that a bone marrow biopsy and aspirate should be done in order to rule out MDS on all ITP patients before using Nplate. When I started on Nplate it was on a trial and one of the conditions was to have a BMB first. I'm glad I did now.

Ooh, my thousandth post, I must have a party!

Here you go, Ann! Party!

LOL.. thank you so much. I'm sipping a glass of wine just now to join in with the celebrations.

Blood work came back today with a count of 1. Not 1,000 but 1. I caught my breath, made dad laugh some and then told him that we should play Tic Tac Toe on his belly. Thanks "Tic Tac Toe" man I asked about the rest of his blood work and he either didn't know or he didn't want us to worry.

Joking aside, the bone biopsy is scheduled for Wednesday as outpatient. Still not sure why it didn't happen sooner. Dad didn't want to inconvenience us kids so the facility will be transporting him. Is there any chance that he may be admitted directly from the hospital, or would we have to "wait and see" (I really hate that term) for the results? The hospital released him at 3,000 but wasn't sure if they would hold him for a couple of days since his count is at 1.

Ann, Congrats on your milestone, I hope you enjoyed your glass of wine . I have read up a little of MDS, but I don't have enough information from previous lab work done. ITP is scary enough, and MDS doesn't sound any better. Before I get too excited, I will play the dreaded wait and see game for Wednesday. Can you guys tell me how long it may take to get results from the biopsy?

Eternally grateful, Lisa

Lisa:

1 and 1,000 are the same thing. It is also written as 1k. All the same. Platelets are measured in ML, so he'd have 1,000 platelets per ML of blood. It's low, but nearly the same as 3,000 because platelet counts have a margin of error of at least 5,000.

I'm glad they scheduled the bone marrow biopsy. About time! The results can take about a week....I don't know if they will try to speed that up for him. It depends on whether or not the sample is sent out.

Good luck you you and Dad!

Biopsy results back...NORMAL. It's really time to celebrate now. Ann, would you like red or white wine cuz I'm sharing with everyone.

Test came back normal and starting Nplate on Friday. Dad has ITP. I never thought I would be so happy to type those words. We just continue to be hopeful that we find something that works for him. Dr. mentioned that if Nplate doesnt work then taking the spleen may be next.

Sandi I should have quoted my dad telling me over the phone "my levels are 1 not 1,000", but then again he also called the BMB a spinal tap. That guy just makes me chuckle.

Thank you all again for the education, reassurance and concerns. My entire family appreciate it.

That's great news, Lisa! I'm really glad they did the BMB.

Are they still going through with Rituxan? If so, between that and N-Plate, I would hope they'd wait at least 8 weeks before moving with the splenectomy.

It's been a week and we have watched Dad's levels increase to 12,000 and now 21,000 today. BIG GRINS

They stopped the Rituxan and is on N-Plate, 2nd treatment tomorrow. We are all very pleased.

The first week after the initial diagnosis was scary and I don't know how we would handled the roller coaster ride without everyone here. As as corny as this sounds, I would like to extend a hug to everyone and gigantic hugs to those of you and your families that just have been diagnosed. You have found the right place to share

Good news, Lisa! I hope he continues to improve!

I'm glad you found support here and I'm glad it made a difference. Thanks for letting us know!