4 rounds of Rituxan and 3 to go

General question: what is going on with the doctors and the 8 rounds of rituxan (or repeating 2 weeks later)?!?!

From everything I've read about rituxan (including statements from the manufacturer), this is crazy talk. Rituxan is a b cell inhibitor, and 4 doses stops all b cell activity for almost a year. Why would any doctor want to do more than that, given that it can't do any more than what it would do in four doses, except pump you full of unnecessary toxins?

Is there some new study out there that we don't know about? Anyone heard anything?

I totally agree with KittieG. Where is this idea about 8 Rituxans coming from? From what I've read, the evidence points to using fewer, and less, Rituxan. I think these doctors are not informed about the research on ITP.
Erica

I agree with Kittie and Erica. Kittie said exactly what Rituxan does. Not having health insurance, I'm really not sure why they would be over-treating knowing you can't afford that. My doctor wouldn't have given Rituxan at all if I'd been uninsured. Pre-Auth was a must. Money aside, too much of these drugs is not a good thing. Four will either work or it won't. More does not make it successful.

I agree with all of the others. It's either it works or it doesn't work. No need to have over 2-4 treatments of Rituxan. You need to be your own advocate on your treatment.

Aside from the treatment--your photo looks great! Wish I could have just shaved my head,too!

Yes one week after another plus vincristin at the same time. I guess i got lucky. Your pic looks nice.

I've read all the same information on Rituxan and also can't find any info on the 8 rounds that I got. I go back next Wednesday for a re check and he has me scheduled for another round not sure yet if its the same drug, but will find out. I was lucky that the RX company paid for the drug it self but still got a bill for the rest which is $16,000.

Amber,
You need to question him and not trust him blindly. That's what I do with my doctors. They don't always like it, but they are dealing with my body and I have a say so. I've made it with a two-year remission because I wouldn't listen to the doctors (I know this doesn't mean it will continue--but at least I was able to enjoy the last two years).

DeeDee

I wasn't on my game when I first got ITP, I am normally a very hard headed and question everything and trust no one. I can tell my platelets are up (co-worker can also tell) my attitude is back. I already have a list of questions for the doctor. If anyone has a question that I should ask if I don't already have it I'll put it on the list.

Amber,

If your platelets are up at the present, ask him what additional meds he wants to give you and why. You shouldn't need any additional Rituxan at this point. Good luck to you!

Agreed w Dee Dee whole heartedly.

Rituxan can take a bit of time to work, so treating again is not really necessary for a while. Doesnt it take wo months or longer for some people?

I just do not understand the reason for so many consecutive Rituxan treatments!!! From what I have read, 4 is the usual treatment and then it is a wait and see game. It can take several weeks after the last treatment before it can kick in. I had 4 treatments the first time that lasted 16 months. I did not respond as good as I hoped after the first 4 treatments. The second round of 4 has had me in remission for almost 3 years. Counts have stabilized, 170-210 within that time. I feel you are being overtreated with Rituxan and should seriously consider stopping any further Rituxan treatments!! I am worried that the overtreating in such a short time is doing more harm than good!

There is a cancer protocol for Rituxan that calls for booster infusions. ITP is not cancer and should not be treated the same way.
Erica

Amber,

I do agree with Erica and Dean. Sometimes these meds can do more harm than good if not taken as they should be.

Dee Dee

For everyone, I am trying to find the info I saw (that we have all read) on the guide lines for treating ITP with Rituxan. My appointment for CBC and re-check is tomorrow, and I'm trying to get my ducks in order. Already found and printed out the NHL chart (which seems that he is going by). I already canceled the infusion he had planed for me tomorrow. Looking websites and links..


THANKS TO ALL.
Amber

Amber,

Did you mean the treatment guidelines listed on the PDSA site? I did a google search and found those guidelines which are as follows:

www.pdsa.org/itp-treatments/rituxan.html

I'm not sure why the site isn't high-lighted--so you would have to cut and paste. There are other sites out there, but they are quite a lot of reading. Also, when you go to this PDSA site, it will lead you to other Rituxan sites.
Good luck to you!
Dee Dee

Canceled my appointments with the Dr for tomorrow, going to see my FP on Thur for a CBC. I'm going to try the natural way. Got my records faxed to me today, and there is alot of information that he never told me about. I am getting the since that he is getting kick backs from the drug company. He had planned for me to get yet again another round tomorrow, canceled that also. They only reason why I said kick back is because I work for a Vet and we get kick back for the Vaccines that we use or the drug we sell. So I'm sure its the same way with people doctors.

Amber,

All I can say is that you have to go with your "gut" feeling. You seam like you are stronger know, and that is good. You've had plenty of Rituxan and I wouldn't understand why the doctor would want to continue with any more. Good luck to you and here's wishing you very high platelets!

Got my blood work back today I'm at 105,000. And I am now looking for an new oncologist, I'm in Georgia, so if anyone knows one let me know.....

Are you near Atlanta - what about one at Emory?

I'm in North Georgia and its looking like I'll have to drive close to Atlanta. I'll check to see if they have a payment program or a chairty program.

Amber,
Your numbers are looking real good!! Around such a big city you should be able to find a doctor
who can help. Maybe ask at some of the bigger hospitals, too. Sometimes they can give you a good
referral. You can also call some of the hemos in the area--or maybe one of teaching hospitals.

Good luck to you!

Amber - first off, good for you for canceling the appointments and doing your research! What a horrible thing if that ends up being the case.

Maybe check into Medicaid - I believe there is a category for people who have an emergency situation, and maybe you fit in that. As its possible you can begin a payment plan as well.

When you begin looking for a new dr, try to find a hematologist rather than an oncologist. The hematologist is who's going to be able to help you the most and know the most about ITP.

Good luck to you - im glad your numbers are high right now. Enjoy!

Most hematologists are oncologists, so it might be hard to find one like that. However, there are hematologists who are much more knowledgeable than others, so you can try to find one who fits you better.

In the UK the ITP specialists are also the specialists for haemophilia, haemochromatosis, sickle cell, thallasaemia and other non-cancerous disorders. Are those also the oncologists in America or are they separate?

KittieG wrote: Amber - first off, good for you for canceling the appointments and doing your research! What a horrible thing if that ends up being the case.

Maybe check into Medicaid - I believe there is a category for people who have an emergency situation, and maybe you fit in that. As its possible you can begin a payment plan as well.

When you begin looking for a new dr, try to find a hematologist rather than an oncologist. The hematologist is who's going to be able to help you the most and know the most about ITP.

Good luck to you - im glad your numbers are high right now. Enjoy!

I tried (foodstamps/Medicaid) they said I make too much money and tried SSI and I make too much money. And now the hospital and the specialist are now sending me to collections even though I have been sending them money every month (I am now so in debt with medical bills). I wish I never went to the hospital from the begining.

My platelets are now at 105,000 going back to family doc in 2-3 months for re-check. I trade out a nail trim on his dog for a CBC.

Amber,
Try to stay calm while you work this out. Stressing out is not good for your platelets. I can imagin how you feel. Somehow you will get this worked out. I'm not sure who you should talk to, but there has to be someone who can help you with your situation. There are so many others in the same situation. I don't see how they can come after you if you don't have the money to pay them and you are trying to work it out.

I've had insurance before and still had the doctor's, etc., turn me into collection agencies. Do you know of anyone you can talk to about all this?

Dee Dee

amberyard wrote: Canceled my appointments with the Dr for tomorrow, going to see my FP on Thur for a CBC. I'm going to try the natural way. Got my records faxed to me today, and there is alot of information that he never told me about. I am getting the since that he is getting kick backs from the drug company. He had planned for me to get yet again another round tomorrow, canceled that also. They only reason why I said kick back is because I work for a Vet and we get kick back for the Vaccines that we use or the drug we sell. So I'm sure its the same way with people doctors.

Sure seems like there is an incentive with all the treatments. Frustrating to think the Dr cares more about $$$$ than a Patients wellbeing!!!
Good Luck Amber!!!