In hospital :(

Amber,

so currently you're trying Vincristine and Rituxan in combination with each other? That sounds like some really powerful stuff. Hopefully you'll get a higher count soon. Good luck!

Amber,

Sometimes all these meds do a number on your body, and it takes time to "heal" and to know what is really working.

Good luck to you and wishing you high platelets.

openhanded wrote: Amber,

so currently you're trying Vincristine and Rituxan in combination with each other? That sounds like some really powerful stuff. Hopefully you'll get a higher count soon. Good luck!

I read on her other post that she is indeed doing both treatments at the same time...my dr suggested Vincristine to me before, but never a combination of Vincristine and Rituxan. That sounds mighty scary to me...and then which one do we know that is working??

In the infusion center today my count was 1k got platelets and sentnme home. Got.home ate lunch took a nap and husband said I wasn't mankind any sense (when I talked). He took me to the ER and after they got blood and blow the vein. Counts came back at 29k????????!!!!!!!! I was happy and felt better than earlier was sent home. All I can hope is take the treatments are kicking in!!!! I have a appointment with the infusion center at 7:30am to check counts and if lower than 7k getting platelets. I would hope I wouldn't drop that much by then.

Re check this morning and counts at 1k, platelets then re check 45 minutes after just before leaving and counts at 41K. I have another appointment at 7:30am for samething tomorrow. So platelets last about 12 hours in me, or maybe my treatments are starting to kick in. Either way I feel better today and my counts haven't been this high in a long time....GO PLATELETS!!

I will say prayers for you that your platelets will stay up. So far, it sounds like they are doing a lot better. Maybe they won't have to give you so many meds; just stay with your Rituxan
treatment.

Wish I could give you may responses to treatment. Didn't matter the drug I responded! Praying your starting to respond and something kicks those platelets up and keeps them up!

Yesterday was the same thing 1K then platelets. Didn't get it re checked after since I knew it would go up. Plus I really don't believe the counts from how I feel and no bleeding. So got the platelets and went to work. So I have an 9am appointment for cbc and I'm sure more platelets.

Treatment day is Thursday they changed it on me again, getting Rituxan and Vincristine. I'm sure they will send me to infusion at hospital for platelets.

Good luck to you Amber. I hope you have a better response. I still wonder what all these meds are doing to your poor body. Make sure you get plenty of rest in between all these treatments.

Alright it has been along day, count at 2k today. Doctors office called and changed from tomorrow too today. Got home about 5:30 and just now got to sit down. Good thing we have a gift card for dinner, Chan will be picking something up on the way home. There is no way I got get the chicken ready since I still have an IV in my left back of the wrist.

Now just to put my feet up and try to get the swollen right foot to go back down. It has been along day that is for sure.

Tomorrow CBC 1:30 at doctors office and I'm sure they will send me for platelets. But may have to see the doctor just depends on numbers. I am feeling better and hoping for good numbers. May have to do the same things as last week/weekend infusion center daily for counts....We will just have to see what happens tomorrow.... BUT 2K IS BETTER THAN 1K....... Still think the hospital labs are off, when I go into the doctors office the numbers are better, could be humane error?? since i feel so much better i'm not believing the numbers...

So Sorry to hear the trouble you are having with this Amber!! Prayers that something will start working for you!!

Alright had a talk with the doctor yesterday and my counts where at 8k a lot better than 1 or 2!! The day before they had to have the IV team come up to put the IV in since they are having trouble getting one in, my veins are shot and platelets are so low they can't put a port in. Did have lots of blood blister in my mouth that morning as well and they are mostly gone this morning. Got platelets and changed from Dex to Pred, I have had better luck with Pred in the past. He did a test to see if I can do the Winhro and should find out today if I can get it. He would then put me in the hospital to do the infusion so they can watch me. If I can't or if it doesn't work we are looking at taking the spleen out.

For taking the spleen out he would put me in the hospital on a Tue or Thur those are the days he is in the office at my location. He would have a surgeon come in and talk to me and have social services come in to see what can be done since I'll be missing a lot of work (disability).

Going to infusion this morning to see where my counts are at.. COME ON PRED AND PLATELETS!!!!

Amber,
Continuing to say prayers for you. I cannot possibly see how you can go to work after all the treatments they have been giving you! I would push for the disability so that you can rest and get better.

Good luck to you and pray that you get better soon.

The thing about disability I would have to work 14 hours or less. Then there is a 5 month waiting period? Don't know how I can make ends meet in the 5 months? I would rather work if a can but yes I do think it is taking a toll on my body. I feel pretty good after platelets but do get really tired after work, so I know the more energy I use the more my body eats the platelets. If I can find away to make it work I would but right now I don't think we could do it. My husband works full time now and has school on Tuesdays, but he gets paid my the job. And who know what will be coming in that day so we really can't depend on his pay as much as mine.

I just went through applying for disability, so I can give you some tips. They normally will not approve an applicant if they are working, since working obviously proves that you are still able to do it. You have to prove that you cannot work any job, not just the one you have now. It's best to get several doctors to state that you are unable to work, and all of your medical records will have to be forwarded to the SSA. Your chances of getting approved are better if you have more than one medical condition. They also usually require a cognitive/mental evaluation with a psychologist; they will set that up. The best thing to do is to get an attorney, or at least consult with one prior to applying. He/she would be able to give you an idea of whether or not you'd be approved, so you don't quit your job and end up with no income.

There is a five to six month waiting period, and I'll tell you, most people do not get approved the first time and end up waiting for years. If you are denied the first time, you can appeal and that normally takes about a year. At that point, you have to go before a Judge who will decide, based on your information, whether or not you should be approved. If not, you can appeal again.

It can be a long, lengthy, time-consuming process. You have to meet certain criteria and having an attorney really helps a lot with the process.

Hi Amber, Please forgive me if I am off base for asking. I am very reluctant to question anyones treatment but may I ask how much prednisone you are on? The reason I'm asking is because you mentioned you were on 4 mg of Dex. My son gets 40 mg of Dex for four days when he gets rituxan as part of his maintenance protocol. I know doctors follow different protocols. My son started on 180 mg of pred when he relapsed at 8 years old but only 60 mg when he relapsed at 28. I'm just hoping if they were under dosing with Dex maybe they aren't giving you enough Prednisone. I'm praying your platelets go up fast. Joan

I did the 4 day pluses at 40mg of dex when started the rituxan. Then he had me take 4mg daily, we changed to Pred 80mg on Thursday. Willing be doing it for a week and he will lower the dose next week.

Wow, Sandi, you guys have to see a psychologist? I didn't have to when I applied for my disability. I just had to get my doctor to fill in some papers. He told me I stood a better chance of being approved the first time than someone with a heart condition. I was approved on the first go, but yeah, it took 6 months. I had to use up the rest of my unemployment first.

I can also make $5000 before I have to report that I'm working, then, if I make under a certain amount(say $9oo) a month for 3 consecutive months, I get to keep it. If I go off it, I can go back on within a 2 year period with no questions asked.

It's a lot different here in the states, Cindy. 65% of those who apply are denied the first time. My attorney told me that he had a client with advanced Parkinsons who was denied. That is a shame, but it all depends on the documentation a person can provide.

The evaluation wasn't a big deal. It took an hour of my time. They want to see how a persons illness/medications affect their social life, daily living skills and ability to think clearly, etc.

Are you still on disability even with higher counts?

Oh Amber,
I just saw this thread! Praying for you and that you start responding! I know how frustrated you must be! You are strong though! We are all thinking of you!

Yeah, that's why I want to get back to work; so I can get off it. I've been in touch with my case worker a few times, just for check ups. She knows I've improved, but I still feel guilty. Unfortunately, without it, we wouldn't be able to survive.

Good luck with your job search. I know you've been trying. If they are still willing to pay you, you shouldn't feel guilty. I don't think that would happen here though. If SSA found out there was improvement, they'd stop the payments. They are really strict here.

Just wanted to let everyone know... Doing the happy dance 13k today and no platelets!!!! "MAY THE FORCE BE WITH YOUR AND MAY THE ODDS BE EVER IN YOUR FAVOR!!" love both movies

Amber, that's doing a lot better!! Now praying that they stay up and you continue to improve!

That is good news Amber!!! Prayers that the counts will continue to rise and find a consistant level!!

The last three counts, 13k, 4k, 5, so I have an appointment today at 9am. So we will see what today brings.

Well that sucks that the counts keep dropping! Praying you find something to get the counts up to a safe level!

So sorry Amber. Will keep praying that the doctors will get your ITP under control! Sometimes these meds can get your body so run down.

19K TODAY!!!!!!

That's great!! Was that on your own?