Appointment With New Hematologist

Hi everyone,

I have an appointment with a new hematologist tomorrow to discuss treatment options. There has been a bunch of new treatments come out since I was diagnosed 9 years ago but to be honest when I read about the side effects they scare the crap out of me more than I think my ITP.

Any suggestions on treatments that you think I should arm myself with?

Remind us of your situation - counts, symptoms, what have you tried, life or other medical issues.
Erica

Hi Erica,

Last count was 7K, splenectomy, no reaction to steroids, IVIG only when needed for a procedure.

I get the usual occaisonal nosebleeds, easily bruise and petichea usually more so around a certain time of the month. I have an IUD which has helped tremendously and am no longer anemic.

Kelly

Well most likely it would be nPlate or Promacta (increases production of platelets) or Rituxan (stops destruction of platelets). Both work for some and not others, as far as I know roughly equal success ratios? That's a good point to research. If Rituxan works you'll probably have stable counts and won't need treatment for many months or maybe even many years. If nPlate/Promact works you might have unstable counts that you need to keep a clost eye on and adjust the medication and you need to take it daily or weekly. Both have major serious extremely rare serious side effects. Rituxan I think has fewer less serious side effects and most are right around the infusion time.

Interesting that an IUD helps with bleeding, I would have thought the opposite.

You could consider not treating too. But if your count is hanging out that low most patients and doctors would lean toward treating, especially since there are some treatments you haven't tried yet.

Insurance is another factor, some pay for Rituxan and some don't, same for nplate and promacta.
Many platelets - Erica

Thanks for taking the time to reply Erica.

The IUD works fantastic, it's like turning off a tap. Sorry guys.

I'll let you know how I make out and thanks again,

Kelly

Does the IUD have hormones in it?

Hey guys,

First off I'll answer Sandi's question. It's a Mirena IUD and I do believe it has hormones in it.

So I had my appointment and the first thing the Hematologist wants to do is a bone marrow exam. She mentioned another exam, I can't remember the name and I've had it before, but it's a scan to check for accessory spleens. Even if they find any I really don't understand how removing them will do anything for me. She also sent me for a bunch of different blood tests. After these exams she wants to start me on Rituxan.

So now I have some questions for you,

1. How painful is the bone marrow exam?
2. What are the odds of having a bad reaction to Rituxan?

Thanks again for the help guys,

Kelly

Kelly:

1. Everyone has a different experience, but I didn't think the biopsy was bad at all. It took about 20 minutes. First they numbed the skin, then they numbed the muscle, then they did the extraction. The actual extraction hurt for about a second. By the time I realized it hurt, it was over. I got a band-aid on my butt and went home. Nothing traumatic.

2. Hmmm - the odds of having a reaction to Rituxan. From what I've seen here, most people do well. The most common thing is to have a reaction during the infusion and if that happens, they slow the drip and give you more meds (steroids, Benedryl). They usually catch reactions pretty quick and monitor patients often. Those are rarely serious reactions because they are treated quickly.

There is another type of reaction that can occur weeks after starting the infusions; it's called serum sickness. I had it twice. It's a delayed hypersensitivity reaction that causes painful, swollen joints, fever, hives, headache, etc. There have been a few people here who have also had the reaction. We've all ended up in the ER. In a few days, you recover and it's over - but you can never have Rituxan again. It is rare.

I had a reaction to my sixth Rituxan infusion (I had four the first series, then this was the second one 9 months after the first series). It was different from what others are reporting.

In the middle of my sixth infusion I had chills. Never had that before. They slowed it down and gave more meds and I was fine. Then a few hours after I got home I started to develop hives. By morning I had head to toe hives that were very very itchy. This lasted about a week until my doctor finally prescribed prednisone.

I've been advised that this is an allergic reaction and that I shouldn't have Rituxan again, I could have anaphylaxis. I never had the serum sickness symptom of joint pain.

Meanwhile I have a 3.5 year remission from those two infusions!
Erica

Hi Kelly
In reponse to whether Bone Marrow test hurts. Well it did for me. But we are all different and I was in good hands. But I had wised up when they transferred me to the specialist hospital and refused it until they persuaded me with pain relief and I didn't feel anything at all. Some thing that required an oxygen mask. It is possible without but far more comforting to us with pain killer. Then again mine was in 1994 and may have changed.... hmmm. It hurt me that all I know.

Rituximab. I had a course in July and sailed through it. It the long term effects I am now wondering about with not having a spleen. I have had one cold and over it but with that poorly feeling. But there again I definately had a platelet drop this week and not reported it as wasn't bleeding. I was stiff on monday evening and tuesday evening those tell tale bruising. May be I should have reported it but don't want another round of prednisolone so soon as swallowed enough this year. So am trying to hang on. Plus I don't want to loose 3 hours out of my day to be told its over 100 and come back next week stuff. Though it only a minor hardship in the bigger scale of life I know and shouldn't moan about that.

The other thing am questioning is that I cannot reduce my weight at all. It isn't budging and may well get myself off to the GP next week because its uncomfortable for me. I been diagnosed with ITP since 1994 and have had splenectomy but I had to as it was enlarged.

Hey guys,

Sorry I'm not getting around here much. I'm a mod on another forum so that takes up a bunch of my spare time.

Anyway, I wanted to update you on my bone marrow biopsy. The doctor that performed the procedure made sure that I had no pain and if I had any discomfort at all he would give me another shot of freezing. It was the weirdest sensation though, it felt like they were drawing from the back of my leg. I have a follow up appointment in December and I'll let you know what the next step will be.

Thanks again for all of your help,

Kelly