End of Rituxan partial remission ~ What next?

It has been almost a year since Ellen began her treatment of low-dose Rituxan (4X 100 mg). This treatment was accompanied by dexamethasone pulses, not as strategy, but to get her counts up while waiting for the Rituxan to kick in. She has enjoyed a nice partial remission with platelets in the 30 - 60k range. Her last count was 50 on July 13, and she will get a new count on her lunch hour.

On Friday Ellen noticed small bruises, which increased over the weekend. Today at work she has a blood blister in her mouth, her first ever. This really snuck up on us. She has used ibuprofen moderately in the past 2 weeks (with doctors approval) following some dental work.

Salvage treatment:

• She will probably go with hi-dose dexamethasone pulses. It gets her a quick response every time, and though she hates it, it is over quickly. It is what her hematologist likes to use.
• IVIG is out except in dire emergency because of her previous treatment-induced aseptic meningitis.

Long term treatment:

• Low-dose Rituxan has worked before, and it will probably work again. Ellen has tolerated it well, although she has had some infections this past year that could be a result of treatment.
• Full dose Rituxan is a possibility, and perhaps might provide a stronger remission. However, the studies I have read indicate that there is no difference in effectiveness.
• With either couirse of Rituxan, I worry about infection, especially since Ellen works in an infectious disease clinic.
• TPO-RAs are a possibility that doesn't increase risk of infection. The possibility of a remission is very attractive, but we don't know for sure if they will work at all for Ellen. Ellen is extremely worried about the possibility of stroke, and the jury is still out as to whether either Promacta or Nplate increase the risk of stroke.
• Dapsone has some attractiveness: It has serious risks for sure, but as I understand it, those risks are minimal if cautious monitoring is done. Although it has a lower rate of success than the other treatments, it is still around 50% effective, and does offer the possibility of remission when discontinued. Most importantly, it increases neither the risk of infection nor stroke.

Ellen and I would appreciate any thoughts!

Well Rob, I'd say that now could be the time to try that Dapsone!

Sandi, I'm not so sure either way.

If the only alternative were splenectomy the choice would be easy.
If Ellen were not at least partly responsive to rituximab, it would not be so difficult a choice.
If there were not a study, with Dr. Provan on the panel of authors, stating risk of thrombosis with romiplostim was lower than with placebo/standard of care, and another recent large study claiming the opposite, the options would be more clear.

Rob,
As you know, I am very new to all of this, but if Rituxan and Dex kept her symptom free and drug free for almost a year, I would go that route if it were me. There are risks, as you well know, with every treatment. However, the freedom of doing the treatment and being off everything for a year, is pretty attractive! The only reason I tried Rituxan was with the hope that I could be drug free. I am not complaining, the promacta seems to be working really well for me, but it is a pill every day, at 3am no less.
Best in your decision making,
Emily

It's never an easy choice. But the good thing is that there ARE choices.

So true. And Ellen and I are lucky she has good choices.

Regarding Promacta, I switched from taking it in the middle of the night to taking it when I wake up in the morning and avoiding foods with calcium for 4 hours. My counts have been the same. Also get better sleep this way.

Rob, All the best to Ellen and you.

Really sorry to hear that Rob! What was her count when she went in at lunch?

You know, I haven't touched anything but Tylenol since diagnosis - I just don't trust anything else.

She's lucky she does have choices - dapsone is something I can't take, IVIg too. Know you will keep us posted. I'm hoping this episode over the weekend was a fluke!

Ellen finally got a CBC last night - too busy taking care of others to take care of herself!

Hematologist's office called today to report last night's count was 22k. Instructions are to start dex pulse immediately, CBC again on Monday, appointment on Tuesday. I am sure that Ellen's count had been lower than 22, because her symptoms were worse than when her counts were in the low teens.

Contrary to the hematologist, I would prefer to wait a few days and get another count, before possibly treating with dexamethasone if counts and symptoms don't improve on their own. To be cont'd....

Tell Ellen I said good luck! I hope she can get it under control soon.

Rob:

I see you have much on your mind. Thank you for taking time for my post.

Wishing Ellen and you the best of luck with the choices you have

Ferv

Thanks, Ferv. I have done my part - laid out the pros and cons for Ellen to decide - the rest is up to her.
So far, she has decided to hold off treatment and see if platelets bounce back on their own.

Crossing fingers and sending good luck wishes
I'm following this thread to keep in touch
Ferv

Was anything going on that could have caused a dip? A cold, or infection, etc.? Mine dip due to various insults then come back up quickly.
Erica

I have you all in my prayers. It's never easy knowing what to do with ITP. Symptoms seem to change as time goes on..so what you knew before about your body and bruising changes rapidly.

Never a easy choice. :dry:

Erica,

She was feeling run down before her platelets dropped, but took that as a warning sign of low platelets, and then caught a cold from her daughter after bruising started. Who knows when you really catch a cold? You only know a cold by its symptoms, which are not the cold itself, but the result of your immune system finally kicking in. So, the start of the cold could have preceded the drop.

You are wise to think this might be a temporary dip, and Ellen is thinking the same way. My alarmist self typically jumps to the worst scenario. That is one reason I am thankful for this forum... as a reality check!

And this is what I was hoping too Rob - the dip was a fluke. Her next count will be Monday? Fingers crossed her count is up!

51K!!! Woo-Hoo!!!

Thank you all for your support, and for helping me to resist overreacting!

Good news!

Great news Rob!

So glad to hear the good news!

Good news Rob

Glad your wife's counts are up, Rob.

It is always hard to know what to do when you come out of remission. Last time it happened to me, the Dr. wanted to go ahead and do Rituxan again. But I was leaving the country in a week, and didn't want the big expense. We were both shocked when a 6 week treatment of our friend prednisone put me back into remission.(Which never worked in the past!) My numbers have been good since December.

Thank you, ananta. Yours is a good lesson in patience, which I am slowly learning.

I thought over reacting was part of being a loved one! I would say that because you came here vented thought out different options I would say you didn't really panic or over react!

Glad to hear the numbers are up! How's the symptoms??

All symptoms are gone except some fading bruises.
Thanks for asking.

Ellen now has a full twelve month partial remission thanks to low-dose Rituxan combined with high=dose dexamethasone pulse. One brief scare, but no treatment at all, and still going strong.

Fading bruises always a great sign! That is how I know my numbers are ok I either do not bruise or they go rather quickly!


I have to say this someone earlier mentioned repeating her treatment if the count had not gone back up. I would be seriously thinking that if the numbers do go down and stay there! Think of repeating her last treatment combo might be in order! the idea of her only having to do the treatment once a year and even longer apart does have some appeal to it!

It's certainly something I will consider discussing with my Consultant if fostamatinib fails. Good news to hear Rob

Hi Rob, glad to hear your wife is better.

Thought I'd check in here; it's been 50 days since my last Rituxan treatment, and my platelet counts have been in the "normal" range twice since; in three days I go for my third CBC and I feel confident everything will be normal.

Side effects overall have been minimal, and my Prednisone taper ended last week after ten days of 5mg alternating days. My sleeping has returned to normal and I need every one of the seven to eight hours I now get! Leg cramps less frequent and severe as well, so basically I am thankfully back to normal.

Three weeks ago I had a nasty outdoor fall (tripped, actually) and fractured my nose, hitting the ground really hard. After a CAT scan and six hours in the emergency room my nasal bleeding eventually receded and luckily ITP seemed not to be a factor in my bruised and swollen face. The bruising and "shiners" around my eyes healed quickly. The aar/nose/throat doc said I fractured my upper nose bone and slightly deviated my septum but only needed to see him again should I have difficulty breathing, which I don't.

Meanwhile a friend I found out also had ITP (my blood sister, I call Janet!) loaned me a book I sent her (Wish By Spirit, by Joan Young) and just today I got around to start reading it. Very thankful my ITP has been less complicated and it seems, finally, to be fading into the past.

So here's someone hopefully "cured" and hoping everyone here finds support and solace in these postings; I will check in again soon......meanwhile my prayers go out to you all!

Jim in Georgia