Need Help

I am new here. Need help and advice from all of you.

My husband throughout his life till age 54, done the very 1st blood screening for self awareness in Jun 2010 and discovered low platelet, count 12k. When consulted the hematologist 3days later the count was 16k. Admitted immediately and on a cycle of IV Methylprednisolone for 3days, discharged- count 81k. 1 week later count 114k.

2 weeks later, count 6k, admitted and on IV Methylpred again for 3days. Count 50k, discharged.

2 weeks later, count 9k, discovered high sugar level and fungus at tongue, admitted for 27days and transferred to another hospital, stay for 16days. Total of 6weeks stay. During these period, another 3 cycles of IV Methylpred and 1 cycle of Dexa has been given, but the count still up and down from 21k – 1k. IVIG given, highest up to 13k, and came down immediately the next 2days to 5k. He discharged on the 3rd day (Sep 2nd) after IVIG at count 6k. Planning splenectomy.

Follow up weekly and count was 2k, 3k, 3k.

We told the Hema last week that we do not wish to go for splenectomy, he was then advised Rituximab. I then noticed that Rituximab was a chemo drug. ITP is not a blood cancer, why it is treated with Chemo? I scared.

Appreciate all advices...thanks.

Rituxan is not technically a chemo, although it is used for lymphoma. It is a monoclonal antibody, and what it does is target B cells and T cells that produce antibodies against platelets. Ideally, and in theory, once those B and T cells are gone, the antibodies will not be produced and the platelets will not be targeted for destruction.

Rituxan does not have the nasty side effects that you'd expect from a chemo such as hair loss. vomiting, etc. Most tolerate it very well and are able to keep going with their normal lives during the four weeks of infusions. It doesn't work for everyone, but it does a great job for many. It can take a few weeks to work, so it's not known for a quick rise in counts. It can give a fairly long remission when it does work.

I've had it, and have had two remissions.

I'm doing Rituxan right now, have one more week left. So far, my counts have risen to normal. I haven't had any side effects at all. I don't think you need to be afraid of the Rituxan. I was, too, but am handling it very well.

Good luck to your husband!

I was really scared about it too - It seems the most common thing to watch out for with Rituximab is an infusion reaction which can occur during the infusion or between infusions. It happened to me - but for now - my counts are hovering in the normal range. I am about two months out from the last infusion and my numbers didn't climb until the series was completed.
But the infusion nurses monitor for reactions carefully and respond appropriately - at least mine did.
I was diagnosed a little over a year ago with no remission until what I am experiencing now.

Best wishes to you and your husband. Please stay on board with us and let us know how you are both doing. Congratulations for having the confidence to request to explore other options before splenectomy. Self advocacy is so important with this condition.
-Chelle-

Hello yean. Welcome. I'm glad you decided to cancel the splenectomy. That, in my opinion, is a last, last resort. I also have had Rituxan. No major side effects, just a little reaction on the first treatment. My counts have been in the safe range since. It's been 4 months now.
In your post you mentioned that the docs found toe fungus. What are they saying about that? Are they saying it has something to do with his ITP?

A very big THANKS to all of you.

Yes, we would think of hair loss and vomiting when we heard about chemo, I just wonder why should we jump into it instead of trying for other oral medications?

About the tongue fungus, hema told me it was the side effect of the prednisolone which raised the sugar level (my husband became a diabetic now), and high sugar level caused the fungus, and fungus caused the platelets dropping……something like that…I don’t understand too.. What I know is since then, platelets not respond to any treatment already.

We are going to see the hema later, the weekly visit also made us feel very stress to look at the numbers and also the hema’s next decision…if we rejected chemo.

Yean

It's called thrush. I pretty much have it all the time from chronic Prednisone use. It's easily treatable.

friendly tip:- eat plenty of probotic yogurt. It helps with the thrush. I suffer it more through asthma inhalers rather than ITP but it helps. The other thing is to gargle with warm salt water. That really helps my throat when I remember:-)

Thank you for all your time to reply and give me some helpful tips!

I feel so lucky to found this site. It’s a place where people really know our feeling, understand the situation and able to give us some advices besides the Hema.

Today the count remains at 3k, after 1week of 60mg prednisolone daily. We did try on 60mg before the IVIG, and reduce to 20mg after IVIG. We will continue 60mg for another week and plan for the Rituximab. Hema told us if Rituximab able to bring up the platelets then should think of removing the spleen immediately. Oh..NO.

Hema told us if Rituximab able to bring up the platelets then should think of removing the spleen immediately. Oh..NO.

"Oh no" indeed.
Don't let anyone rush you into removing your spleen. If it were a 100% certain cure, that would be different. But it is not.
Some docs tend to yank the spleen because they may not know what else to try and/or it costs less money over the long run than some other less invasive treatments. A splenectomy may be one of the least expensive treatments, but there are plenty of options available which do not involve removing an organ.
Some countries with socialized medicine may not give other options.....But, if you have a choice in the matter, you may want to see what other treatments are available to you.

I like my spleen, I've become quite attached to it over the past 57 years.
Removing it would be my absolute final treatment choice, after exhausting all others.
.

Yes. After reading through all others experiences, we decided to put splenectomy as our last last resort. Thanks to PDSA Discussion Groups.

My husband did agree with splenectomy during his long stay in hospital. He was so upset, whatever suggestions which he thought might get him out from the horrible place, he will compromise.

Yean I agree, A splenectomy in my opinion is a last resort because it's permanent. I still have use for my spleen and My ITP is severe.