Welcome, Guest
Username: Password: Remember me

TOPIC: Rixtuxan versus spleen removal

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26376

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
I totally agree with eklein. This may be all you need.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26377

  • Nitin
  • Offline
  • Posts: 38
  • Thank you received: 11
ddinap@aol.com, I think u should go to dr and tell him/her how ur feeling and let them decide..
I am in the same situation as you..diagnosed with ITP in April 2012 and since have tried steroids, IVIG,
Cyclosporine, Cellcept... but nothing seems to work, my counts remain in range of 4k. Now my dr is advising either Riruxan or Splenectomy and I am really confused as what will going to work for me. Got another 10 days to decide before taking a call. I am thinking of trying alternative treatment (Homeo, Ayurveda) for sometime before going for Rituxan or Splenectomy. Best of luck to u.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26380

  • Ann
  • Offline
  • Posts: 1895
  • Thank you received: 355
Cyclosporine and CellCept can both take several months to start working so if you've only been diagnosed three months or so you may not have taken them for long enough before giving up. Your doctor is rushing treatments maybe.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26405

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
I am heading for my second Rituxan tomorrow. I talked to my dr today and they are goign to give me Xanax to try to calm me down for as long as i am on the Rituxan. We agreed however that if I have another allergic reaction to the Rituxan that it will be my last infusion. I have no intention of repeatedly going for something that is going to close my throat and then cause panic attacks for days after because of it. I actually do ok on prednisone for managing the ITP. The problem is getting me to a low enough level where I can avoid the long term side effects of the Prednisone. I think we will have to do that though if I have any issues tomorrow. I can't handle another kind of drug that may have even worse side effects than the Rituxan. And I am not willing to have my spleen removed right now either. I had no ITP side effects at all, even when my levels were at 10,000, but i have felt like an absolute mess and like I have been living in a nightmare since I had the Rituxan last week. If anything goes wrong tomorrow, I will just take my chances with the Prednisone for a while. I feel like my body can only take so much at one time...

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26409

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
Well, if you are not having any symptoms and are generally feeling fine even with counts at 10k, then you may not need to treat at all. Your body can handle the low counts. If you do not need rely on Prednisone, I would get off that also.
Good Luck

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26420

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
Dean is right. If you are not having any bleeding symptoms, then you may not need to treat at all. Maybe your body just needs to heal. I know that I am going to be very careful if I do take another medication. I was told by one doctor at the conference that since I have a family history of "MDS" that I should not take any TPO meds. We all need to be careful if we have any family history of certain blood disorders.

Good luck to you and hope this one goes better.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26430

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
Had round 2 of Rituxan today and had no allergic reactions! Of course I was so heavily pre-medicated this time that I felt like I was in a coma for the first 2 hours, but honestly I will take that over the allergic reaction. They said I am unlikely to react to it again for the last 2 treatments, which I hope will put my inner tension at ease!

My platelets before they even started the infusion were up to 165,000! I was so excited! I am just hoping this keeps working. They are starting to taper down my steroids as of tomorrow. I feel like if I can get off steroids and put this thing into remission, it will be worth all the stress over the Rituxan!

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 1 month ago #26433

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2336
That's great! You really don't have to do the last two infusions. Four infusions is really nothing more than a habit.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26442

  • Dean
  • Offline
  • Posts: 662
  • Thank you received: 86
That is GREAT!!! One of the best things when dealing with this is not having to stress out over it.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26443

  • Nitin
  • Offline
  • Posts: 38
  • Thank you received: 11
Thats great ddinap@aol.com, wish you best of luck.
Thanks Ann for the info, will certainly speak to my doc at next meet.
This site has been a great source of info & support for me...
Thanks to all..

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26451

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
I'm really happy for you! And, I'm happy that the doctors made you more relaxed during the treatment.

Remember what Sandy said, too. Four isn't always necessary.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26488

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
has anyone ever had Rituxan worth with less than 4 treatments? i have had the 2 so far and honestly do not know if i can have the last 2. my body is just a mess! yesterday i did not get off the couch all day, except to go to an Urgent Care Center when i felt like i could not breath and my throat was swelling. i am taking benedryl every 4 hours around the clock, as well as 2 150mg zantac per day. i am up all night with chest pains and feeling like i can't breath.

i am thrilled that my platelets are higher, but i just dont know if i can go through this 2 more times. it is doing a number on my body! if it were any other symptom but not being able to breath it would be different, but that is very scarry, especially in the middle of the night!

any one else had similar issues? i am going to talk to my dr today. but yesterday was actually worse than how i felt last week after the treatment!

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26489

  • eklein
  • Offline
  • Posts: 1353
  • Thank you received: 167
Two infusions is most likely enough! Using four is just a leftover protocol for some cancers.

I had two infusions and a four year remission so far.

I also had chest pains after the infusions but I was fine by the next day. At least one other person has posted they also had chest pains that went away. We thought it might have been heartburn, severe.

If you are having these allergic symptoms like closing throat after the second infusion, if it was me I wouldn't have any more Rituxan. And watch out for joint pain, if you start having that it could be a symptom of serum sickness.
Erica
And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26490

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
that is good to know! i am going to discuss with my dr today. i am supposed to get another dose next tuesday!

last night it was so bad that in addition to the benedryl and zantac i had to use my 7 year olds albuterol inhaler as well at 4am! that worked the best! the drs i keep seeing seem to think it is all stress induced and that my mind is making it worse. i know my body pretty well though and i am having a hard time believing i am imgining that i have chest pain and can't breath! though it does get worse when i stress about it.

the dr told me to watch for joint pain and fever! that's all i need right now is serum sickness!

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26497

  • poseymint
  • Offline
  • Posts: 545
  • Karma: 1
  • Thank you received: 140
dd- Perhaps you are having an asthma attack? Even if your reaction is partly stress induced its still real. You probably know all about asthma if your son has it, but will briefly tell my story.

I began having adult onset asthma attacks after a traumatic experience in the hospital. It was the stress that caused it but it was still a real problem. A pulmonary specialist explained it was an over-reaction of the immune system (sound familiar?). His treatment plan was use an inhaler before an attack, preventing any attacks. And in this way the immune system "forgets" to over-react. It took a few years but eventually the asthma went away.

Sounds like you don't need anymore Ritux. But IF you decide to do another round, you can wait. It doesn't have to be every week. My docs office was booked so I waited a couple weeks between doses. good luck to you!

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26500

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
I would be very careful if I were you. Your body is trying to tell you something. And, your platelets are going up--so that is really good.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26504

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2336
DD:

I had one infusion and have had a 7 year remission. Seriously, if you don't want it, don't get it. It's not written in stone that you need four infusions. Two should be enough. If you are responsive, you should see a rise in counts within one to ten weeks.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26509

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
DD:

Sandy's been through this and knows what she is talking about. Sometimes we get carried away (I know I did!) thinking we are going to do better if we take all the doses. I did this with Decadron--taking too many doses when a couple treatments had already taken effect.

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26510

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
went back to the drs today. they did a chest xray and EKG and i have to go back tomorrow for an echocardiogram. they suspect it is stress and anxiety, which they say can feel like a heart attack. i am still scheduled for rituxan #3 next tuesday, but i told him if my breathing is still off thru the weekend then he can cancel it, as i am not going to go back for another one. i do feel better today. he said it does wipe people out for a day or 2 after sometimes. at least today i was able to get off my couch amd eat a little. i have lost 5 pounds in the last 3 days!

i am going to ask him about the asthma onset when i talk to him on monday. i got your mesage about it after i left the drs today. the albuterol does seem to help. i am going to try taking it before bed tonight to see if it helps. thankfully we have a ton of it in the house from my kids!

at least my platelets keep going up! hard to believe that 2 weeks ago i was stressed about y platelet levels and since i started rituxan i have not given my platelets a second thought!

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 4 weeks ago #26511

  • Sandi
  • Offline
  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
  • Posts: 12447
  • Karma: 11
  • Thank you received: 2336
You can sleep after Albuterol?

Treatments can be worse than the disorder for sure. I'm glad you are doing better!

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 2 weeks ago #26635

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
have done 3 of the 4 treatments. got blood today and for the first time in 3 weeks my levels had dropped. they had gone up every week since i started rituxan. went from 100 to 185. today they were back ay 115. still high, but hoping it is not a downward trend. mine have dropped very quickly before. i am down to 10mg daily of prednisone.

i am just hoping this rituxan works. i have been so sick for the last 3 weeks. i have a 3 and 7 year old son that i have not done anything with in 3 weeks! i can't even let myself think that this is not going to work after all this.

do levels sometimes go down before they go up? my dr said it could take up to 3-4 weeks after teh last treatment to see real results. i really just want this to work!

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 2 weeks ago #26641

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
DD:

Maybe you don't actually need any more treatments. They could be having a bad reaction with your body and this could be why your platelets are going down. Sometime (like others mentioned) you don't need all 4 treatments--especially if your body can't handle it. These are just my thoughts.
The following user(s) said Thank You: kym

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 2 weeks ago #26703

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
i honestly do not even know what dose i was given. i had my 4th and final treatmet today though. i am very glad it is over! i am sure i will have some after effects this week as well, but just knowing i do not have to go back next week for another is wonderful.

so far it has not started working. my platelets were down again today to 70. they were 185 about a week ago. the dr increased my prednisone (again) from 10-20mg. and he thinks the IV steroid they gave me as a pre-med will also help the levels go back up. he is hoping to see signs of improvement in the next few weeks. he said he rarely sees it work until about 2-3 weeks after the last treatment.

i woudl really like to be able to get off steroids, but at this point i am not willing to try any other treatments if the rituxan did not work. my body needs a break both physically and mentally. i just want to be able to spend some time with my kids and be able to play with them, even if that means daily prednisone. after being surrounded by death and cancer in the infusion lab these last few weeks, i am actually thankful i only have ITP and that the prednisone seems to work. i know the steroids have their own issues, but it is nothing as bad as what i have seen in patients in the infusion lab.

really all i want at this point is to have my life back. i want to feel well enough to play with my kids and exercise and eat again. once i can do that again for a while i will look at other treatments. but hopefully the Rituxan will start to kick in soon! that is my hope...
The following user(s) said Thank You: kym

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 2 weeks ago #26704

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
dd,
I, too, think you have been through enough. Please don't even start thinking about other treatments for quite a while. You do need to give your body a rest and also give the Rituxan and chance to start working. As others have said, it does take a while to start working (about 3 weeks).

Good luck to you and just try to get some rest and enjoy your kids.
The following user(s) said Thank You: kym

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 2 weeks ago #26717

  • Nitin
  • Offline
  • Posts: 38
  • Thank you received: 11
dd
My sympathies and best wishes are with you.
Try to get some rest and I am sure rituxan will work.
I too am planning to go for rituxan treatment in next month.
My doc is waiting for 1 more month to see if cyclosporine works for me or not
as for last 3 months of treatment my count wouldnt go above 3-4k.
The following user(s) said Thank You: kym

Please Log in or Create an account to join the conversation.

Re: Rixtuxan versus spleen removal 7 years 6 days ago #27053

  • ELC1
  • Offline
  • Posts: 2
  • Thank you received: 2
Thank you for your comments. I really needed to read and see I not alone with the ITP. I just received my first Rixtuxan treatment Wednesday in the hospital. Platelets got down to 2. I feel tired, sore, and confused. It should go away soon. I hope. I feel so lazy just sitting in a chair and looking up info on ITP. So I'll try to not whine. But I think I'm already doing it. I miss going out and working, driving. Go back on Tuesday for CBC. Trying to stay positive.
The following user(s) said Thank You: kym

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 6 days ago #27058

  • ddinap@aol.com
  • Offline
  • Posts: 57
  • Thank you received: 13
Hang in there! I finished my 4th and last Rituxan treatment about 10 days ago. It was hell to do all 4, but I did it. Now I am finally feeling myself again and working out and eating! I got my levels tested this past Tuesday and Friday and they were 155 both days! I am still on prednisone, but starting to wean off now. And the dose I am on now is not high enough to hold my levels above 100, so I am keeping my fingers crossed that the Rituxan worked!

So hang in there! You will hopefully feel yourself again soon!

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 6 days ago #27061

  • DeeDee Marie
  • Offline
  • Posts: 858
  • Karma: 1
  • Thank you received: 143
DD,

It's so good to hear that you are feeling better and your platelets are staying up!! Good for you for hanging in there.

ELC;
You need to stay positive, too. Hopefully, you will get through this and your platelets will come back up. But, remember, everyone is different in how they react to Rituxan. Sometimes, it takes a few weeks before they start to come out. Just take care of yourself in the meantime.

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 5 days ago #27091

  • dontash01
  • Offline
  • Posts: 2
  • Thank you received: 0
I'm having my spleen removed on Wednesday. I haven't had ITP long - only since April of this year, but I'm tired of the 2-3x a week appts. I've had platelet transfusions (during an 8-day hospital stay) heavy doses of steroid (110mg at the highest) and several doses of IVIG (that stuff is the worst for me - makes me very sick). The doc said I had two choices - take out the spleen or take Nplate for the rest of my life. Just curious to see if folks have had success with the splenectomy. I know there's a chance that it won't work, but I'm worried about the long-term side effects of taking Nplate (I'm 39, God willing I could live another 50 years).

Please Log in or Create an account to join the conversation.

Rixtuxan versus spleen removal 7 years 4 days ago #27092

  • karenr
  • Offline
  • Posts: 429
  • Thank you received: 48
Dontash, if I had discovered this site before my splenectomy (2004--failed--elevated my platelets for a couple of months only), I might still have my spleen. I'm older than you, so my chances for success (success being remission for a lot longer than two months) were not the 66% I had been told, and I hope your surgery is successful. Prednisone (moderate doses) did work for me before my splenectomy, and it seems to work still, so I've never been hospitalized, had IVIG, had platelet transfusions. I don't know how low your platelets were or what your symptoms are, but most of us haven't been hospitalized for ITP and regard IVIG and platelet transfusions as very temporary solutions.

By appointments, do you mean lab draws? Four months probably seems like forever to you, but in most cases it would be a short time to make such a decision as splenectomy. Even though I didn't know all I've learned from this site, I waited four years. Of course, my symptoms were manageable.

If you're committed to the splenectomy, the surgery itself (laproscopic, right?) involved a short and easy recovery for me.

Please Log in or Create an account to join the conversation.

BBB Cleveland logo GuideStar Seal NORD Member Badge 2018THSNA logo