All Good Things Must Come to An End....UGH!

Hey guys!
I posted a few weeks ago about my numbers dropping. Unfortunately, they are still dropping! WAHHH! It was the weirdest thing. They went down to 103 from 152 (over a month ago), then rose to 110 on their own, and then to 120...then today they were down to 97! My hematologist wants to catch them before they get any lower. When I first began treatment it was hard to get them above 30. Then, once the steroids kicked in, they rose to 70 and then dropped back down. That is when I had my first round of Rituxan...which brought them to the 300s and they stayed between 200-300 for 5 wonderful, glorious years! I guess the research is right...it does start to wear off around the fifth year...how about that? Anyways, I am now on a high dose of dexamethasone! I'm as hyper as a hyena and running around like a crazy woman. My hematologist is fairly confident that the steroids will get them up and that I may not have to treat again with Rituxan...at least not right now. I always respond to steroids and even the slow taper keeps my numbers pretty high for the most part. I sure hope I don't have to do Rituxan, but if I do, I am going to put on my brave face (my big girl panties) and deal with it. I was fine last time, so I wlll be fine this time, right? I have a few questions for y'all to help me out with:

1.) Has anyone else been on dexamethasone? How did it make you feel? Right now I am like hyped up on mountain dew and acting like a loopy person...perfect to get some things done around the house!

2.) Has anyone one here had success with dexamethasone...as far as it keeping platelets in the normal range for a while?

3.) Has anyone here had success with a second round of Rituxan?

4.) Does anyone know the success rate for the second round or does anyone know if you are prone to side effects with the second round? I had ZERO side effects with the first round.

Thanks for being there for me guys, hopefully I repay the favor in some sort of way.

Natalie

Hi Natalie,

I did rituxan a second time, 4 1/2 year remission the first time and 18 month the second time. But I know other people had a longer remission the second time. I didn't have significant side effects either time. I did better the second time as I was less nervous about it.

I haven't been on dex but I get really hyper on high doses of prednisone. I get everything done in my house, it gets so clean!

I had great success with a second round, 4+ years and counting. I also had worse side effects with every infusion and the last one (only got two in the second batch) had me short of breath during the infusion and covered head to toe with hives the day after. So no Rituxan for me ever again.
Erica

Well, even that little bit obviously helped you! You guys give me so much hope! I will most definitely keep you both updated! Thank you so much for your responses!

>>>"Has anyone else been on dexamethasone?"

Yes, often. I usually keep it on hand as a rescue treatment.



>>>"How did it make you feel?"

Really, really, really WIRED. Not fun wired, nasty wired. You get accustomed to it though.
Try working a 40-hour engineering gig, run a side business from home, then play/sing in a biker bar on weekends on Dex.
Now that is some fun!
Bear in mind that a 40mg dose of Dex is equal to 267mg of Prednisone.....it is potent stuff.



>>>"Has anyone one here had success with dexamethasone...as far as it keeping platelets in the normal range for a while?"

That depends upon what your definitions of "success", "normal", and "awhile" are.
A standard '40mg x 4 day' pulse will successfully boost my platelet count into the 60k range. I may get a week out of that if I am lucky. A week is "awhile". After that, counts will drop back to sub-4k in a few days.
"Normal" is always an interesting term. I've never known a count above the 90k range (a decade ago), most recent was 19k...that is normal for me. A lot of us live just fine with low counts, as long as symptoms are okay, a number just is a number.
Didn't the "normal" threshold drop recently to 100K?

.

Natalie - there are studies that suggest that Rituxan and Dex at the same time may give a better and longer remission. I don't know of anyone here who has actually used that combination, but maybe you could bring that up with your doctor.

bloodjournal.hematologylibrary.org/content/115/14/2755.full

Sandi,

The study showed that Dex plus Rituxan is better than Dex alone. Not necessarily better than Rituxan alone, which was not studied. My impression is that Dex is used for short term effect, and Rituxan is added to get a more sustained response. Is that an unusual strategy?

Are you back from Topsail Island? Is that a fresh tan I see in your new profile photo? Where's the "Like" button?

Rob

Rob:

You are right about that. I was under the impression that the two together gave a better response than either of them alone. There are other articles which I will try to look for later. I don't know what the point would be of giving them together if the response is the same as Rituxan alone.

Yes, I am back from Topsail. I have a slight tan...couldn't resist the sun totally. I used to sit on the beach from 9 to 5 every day. I did limit it to 2 or 3 hours for 3 days only. I don't know why my arm looks lumpy in the picture. I do not have any lumps!

I received rituxan and dex pulse at the same time and have had near normal counts for two and a half years, going on three. I found a study that suggested it and my dr agreed to try it.

Theresa

THE SECONG TIME IS always not that easily,but you can conquer that with your heart .I didn't use any of yours.I used PH4 and prednisone both of the time.THE first time lasted 18 mouth,and the second time 20 mouth until now.The first time took place in summer,9 mouth of deduction passed quickly;the second time in winter,easily got cold,9 mouth passed very slowly.I pay much attention much to my body,strenthen my body during the deduction.Now my count is 200 thousand .