Just Diagnosed

Hi Paul,

I am so sorry your counts have dropped and you are back in the hospital. I hope you and your family--especially your children--are holding up OK.

My doctor says that IVIG is even more expensive than Rituxan, as is NPlate, since you are on it weekly and indefinitely. Wouldn't it be nice if your doctor could just get on the phone with the insurance and explain it that way, so they would be saving $$? I wish the world worked that way.

I have not had any problems with my insurance, but it would be nice if the makers of Rituxan would go ahead and go through the process of having it be FDA approved.

I hope you get approved quickly for Rituxan and that the result is lots of platelets. You will be in my prayers.

Sarah

Had my first Rituxan treatment on Thanksgiving! I understand that it can take some time before you see results. Still on IvIg and steroids to get the counts into a safe range.

No real side effects from the Rituxan that I noticed, except felt kind of down the day after and definitely felt more stressed out. I think contemplating that this may be a long term fight is very difficult to accept.

It is has been hard on my wife and children, and I know that I need to stay positive and focused. This site has proven invaluable by way of both information and support.

Will keep updating my progress….

Thank you for all the support,

Paul.

Please do keep us posted Paul. Its a frustrating thing, Im also still having a hard time dealing with it and my son was dx in July. Its a roller coaster ride thats for sure...but this site was invaluable for support, I didn't know that all these people were out there until I came here. Its good to know your not alone and we'll all pray for each other.
All the best and our thoughts and prayers are with you.
Angela

Not certain if this publication was posted, I found it interesting.

www.hematology.org/Publications/Hematologist/2010/4965.aspx

Got released from the hospital with my counts at 70, I will do my second treatment of Rituxan in a couple of days. I am praying very hard that it works. I had hoped to see a higher count with the IvIG, Pred and then Rituxan. But at least I am at home.

I think that I can deal with the lower counts, but when they go so low where I have to be hospitalized, that's the really hard part.

If Rituxan works when do most people see the jump?

Thanks,

Paul.

Wow, they kept you in the hospital until your count was 70k? I haven't seen 70k in many years. One does get accustomed to what may at first seem like 'scary counts'. Anything over 20k has been gravy for me over the past few years.
I was one of those who used Cellcept for a few years, until it stopped working for me.
Then I went to Cyclosporine for a couple of years, until it stopped working for me.
Both of these worked about the same for me and had similar side-effects. I caught a lot of colds on them. Of the two, Cyclosporine is less expensive, because there is a generic version in the USA. Cellcept has no USA generic. Both worked about the same for me, then both stopped eventually.

I've been taking the max dosage of Promacta for 10 months now.
It works far better for me and insurance didn't even wince at the $8,000 a month cost.

Hang in there, it becomes less scary after awhile.

I was a slow learner :laugh: - took 9 weeks from my first Rituxan infusion to show significant improvement. Because I was hospitalized with pneumonia I was having daily CBC's and could "see" the count climb over 8 days.

I'm happy for you Paul that your counts are up to 70. That's a safe #. You know, you don't have to go into the hospital everytime they want to admit you. My hemo did not admit me with a count of 1. An over-zealous ER doc did when I was at 4, but it was only overnite. I say over-zealous because I believe he lied to me when he said my hemo wanted me to stay. And I know he only had my best interests in mind. Anyway, that's all water under the bridge now. It's all up to you, they can't force you to do anything you don't want to! You may want to consider how your doctor would take the news though! I dunno, I only know they can't make you stay. But then again, we believing that the Rituxan is working and there won't be a need for you to stay in the hospital ever again!

I'm glad you're home, Paul. As the others said, the majority are not hospitalized with low counts, but a lot depends on the symptoms you are having. At 3, I was told to go to work. I had bruises and petechiae, but no real bleeding. Maybe that is something you can discuss with your doctor.

I saw results from Rituxan right before I was to get my fourth infusion. My counts were about 10 and below the three weeks prior to that, then I shot up to 150.

Back in the hospital count at 2 or 1, they ran it again to ensure. I was supposed to do my 2nd Rixtuan today, but had to cancel to start the IvIG. Nose bleed, but not dripping or running just kind of clotted blood.

Splenectomy is what is being recommended, since I keep dropping below 10 so quickly as soon as I stop IvIg. They can’t keep the counts up and they are concerned about bleeding. I also had a few hematomas in my mouth.

Still weighing the pros and cons on the splenectomy, but I keep bumping into the question of how to manage these low counts, while giving the Rituxan a chance to work. They can’t give me IvIg every day, so how do I maintain at least 10-20. Do I just do the splenectomy? Have I reached that stage?

I am so past frustrated at this point and don't know what is the correct decision.

Any ideas??


Paul

Paul - again, it depends on the symptoms. While I was having Rituxan, my counts were under 10. I just kept doing my normal thing until Rituxan kicked in (week 4). I'm not suggesting you do that; you have to do what you are comfortable with.

Only you can decide if you've reached the splenectomy stage. Do you feel like you've done all you can? Are you ready to try it? There is no guarantee it will work. Have you tried Decadron? Win-Rho? (sorry, I can't remember). Those are two other options for quick bumps if you respond. IVIG doesn't seem to be doing much for you.

There have been studies done on Rituxan and Decadron as a combo:

www.hemonctoday.com/article.aspx?rid=33384

journals.lww.com/oncology-times/Fulltext/2009/02101/ITP__Rituximab_Dexamethasone_Combo_Effective_for.3.aspx

professional.cancerconsultants.com/oncology_main_news.aspx?id=42892

www.caring4cancer.com/go/community/news?NewsItemId=42892

Paul,
I'm wondering, do the doctors have any evidence that your spleen might be enlarged or abnormal? That would be a point in favor of splenectomy - plain old ITP should not evidence an abnormal spleen.

Then, what Sandi said - have you tried the other treatments?
Erica

As a failed splenectomy ITPer, I urge you to study up on splenectomies before you have one. I hadn't done enough research, I think, and my hema and the surgeon were so optimistic. I did the research afterwards and found that at my age, especially, the chances for remission weren't as high as I had thought.

Courage!

Personally, I'd try some other treatments before handing over my spleen.
It doesn't appear that you've tried Nplate or Promacta yet. Both are designed specifically to increase platelet production in ITP patients. After everything else I tried stopped working for me, Promacta has taken me from 4k to my current 64k.
I know this whole adventure is scary at first. Remember that many of us have gone (or go) about life with 4k or less counts. I allowed myself to be hospitalized only one time for ITP. That was very early in the game, when I didn't know what was what and my GP doc was learning as well. She saw a 10k count and the next thing I knew I was in an ER room hooked to an IV, then spent a few days in The James. Nice place to visit though.
After that, my hematologist and I went through the process of figuring out my 'safe' level and worked from there. No more hospital trips for ITP since the first one.
Hang in there.

Paul, I don't have any fresh ideas, I'm sorry to say, but I am still a newbie.

Have you talked to a second (or third) hematologist? (You probably don't have time, since it sounds like you are living at the doctor's office or in the hospital hooked up to an IV pole.)

I hope they will be able to figure out a way to finish the Rituxan and see if it works.

Good luck--sending many positive thoughts your way.

Sarah

Paul, it has been a few days since you posted. How are things going?

Hi Guys,

My apologies for not posting an update.

I had my spleen removed in early December 2010 and had a difficult recovery from surgery. The day after I was released from hospital, which was about 4 days after the operation, I ended up back in the ER with severe headaches and tachycardia. I had to stay in the hospital for another 4 days for them to check for post-op infections (none found).

The good news is that after the surgery my counts did rise to 120K then to 155K. I was however feeling quite low and visited my hematologist several times due to a general unwell feeling. I was also anemic. Around the end of January, my counts had risen to 291K and I was feeling more like my old self. The unexplained headaches continued until mid-Jan then gradually subsided.
Right now I am slightly light headed (started about a week ago) so I am heading back (was not supposed to go back until mid-April) to the dr. for a check.

The ITP road is long and I believe never ending, I worry about my condition every day and look for signs that my counts have dropped.

I am extremely grateful to this site and to the members that offer advice and support. It makes this journey easier.

Will continue to post my experiences and offer help where I can.

Best regards,

Paul.

Paul - just a thought, but a lot of people with ITP have 'platelet microparticles' which are tiny fragments of platelets. Sometimes getting counts into the normal range can cause a problem with the microparticles which could be the cause of the headaches and dizziness.

INCREASED MICROPARTICLES LINKED TO THROMBOSIS

'Researchers in Spain measured and tested the clotting potential of microparticles (very small bits cells) in the blood of people with ITP and found that the microparticles in these patients were more prone to form blood clots than the microparticles in the control population. This was also true of those ITP patients who had a splenectomy and were in remission. The clotting potential of microparticles may be helpful in preventing bleeding, but this condition may also make people with ITP more prone to heart attacks, strokes, and clots in their veins than might be expected.'

#3707 “Increased Microparticle-Linked Procoagulant Activity In Patients with Primary Immune Thrombocytopenia”

www.pdsa.org/products-a-publications/e-news/2010-e-news/item/405-platelet-e-news-december-21-2010.html#INCREASED_MICROPARTICLES_LINKED_TO_THROMBOSIS_IN_ITP

Hi Sandi
Thank you for the article. I have been wondering about the potential of clotting more easily and the side effects. I have a physical in a few weeks and will discuss it with my GP.

I would be interested to learn what other ITPers who have had their spleen removed have experienced.

Paul.

Hi Paul,

I had my spleen removed in 2006 and really haven't noticed any difference. It didn't work for me after the first week or so. I don't get any sicker than usual, but on the other hand, if I know someone is sick, I don't go around them. I get my flu shot every year.

I recently changed family doctor's and this new one when I told him about my ITP, told me I had to either get to a hospital or in to see him if I develop a high fever.

Those are just my experiences; someone else might have different ones.

Paul, my splenectomy (open aka the big slice vs Laparoscopic) was nearly 10y ago and recovery was generally "normal" and 4 weeks later back to work with good counts. Because it was planned I had the 3 or 4 shots before surgery. I was warned about high fever (101) and need for immediate medical care but fortunately never had such a incident. I was faithful in temperature monitoring if I had a cold or anything. I didn't attempt any "special" vitamins, health foods or germ avoidance. I had multiple young grandchildren and germ isolation would have been futile It took a few years before anxiety of infection or ITP recurrence faded into the background and life was good - but the thought of recurrence was never far away.

Unfortunately ITP recurrence did come back into my life almost 10y after splenectomy and I first attributed those little red spots as a rash, but within two weeks I knew it was ITP. ITP was confirmed by CBC and while still in very safe range, my historical CBC's showed a clear decline. Within a month I was back in the danger zone (teens) and still falling. Back on Pred which did not touch ITP (nor had it or multiple other RX 10y ago). Rituxan was the Rx that boosted my counts but it didn't kick in until week 9 (which by then my MD and I had decided it wasn't going to work).

Now the bad history - This recent episode and pred allowed Pneumocystis pneumonia to take hold (common for immune suppressed and one of the very aggressive pneumonia I was told). The high fever spikes (> 101 but only for a couple of hours) I monitored sent me back to MD and they eventually hospitalized after two return visits. Because it was detected relatively early it was controlled within several days. Unfortunately within 5 days I was hospitalized again with suspicion of septic shock. I felt much worse with this than the pneumonia - mental view wasn't very good when the MD called 911 to the office! Obviously that was controlled too. I mention all of this simply to impress the SIGNIFICANCE of temperature monitoring and early detection. The danger of sudden and overwhelming infection is real and demands quick treatment. Don't attempt to tough it out. But with diligent monitoring and quick reaction it can be controlled.

The experiences shared here are valuable and can help us come to "accept" and manage our condition. They also educate us and help remove the isolation through shared experiences. ITP can be overwhelming or we can grow old with caution, awareness and diligence - Yes it can still be hard, but it's also possible to have a reasonably safe and long life.

Praying you Keep the Faith and stay the course! Life doesn't end with a Dx of ITP, in fact I think in many ways it makes it more special and that's a good thing.