I just meant that it's no wonder you are so stressed out. ITP can be stressful, but there are a few things I can say that might help you feel a bit better. I think you have some misconceptions going there.
1. Rituxan isn't chemo. It's a biological treatment like Enbrel, Humira and Benlysta. It doesn't have nearly half of the dangerous side effects that real chemo does. I haven't heard of anyone losing their hair while using it, so I'm not sure what happened to you. Steroids usually cause that more than Rituxan might. Rituxan only targets B cells and T cells, which are one type of white cell. Chemos can destroy a lot of other healthy cells (which cause hair loss) and can cause much more damage to the body. There is no comparison between the two. I also don't know of anyone who didn't keep working while getting treatments. You weren't alone there! Most people can continue to work with any of the treatments, although it's not so easy with the steroids sometimes.
2. It might also be beneficial to think of your doctor as a hematologist instead of an oncologist. It sounds less ominous. With ITP, the doctors are acting in the capacity of a hematologist and are not treating cancer. Sometimes it helps the mind to realize that you are so much better off than many of his other patients who are dealing with cancer.
3. ITP is not always a lifetime battle. I have seen so many people go into remission over the years; people who never thought they would. ITP can come and go and studies are showing that Promacta sometimes causes remission. Wouldn't that be great? You do still have that hope. I never thought I'd see remission after 8 years of dealing with ITP, but I did. Even if you don't get remission, it can sometimes be managed in a way that does not affect life too much. You just have to find it and that can take some time.
4. It's okay to have below normal counts. Usually, anything over 20k is considered safe if there is no serious bleeding. A few bruises are okay. Being under 50k does not mean that you are in a serious situation. A lot of people would not be hospitalized with low counts unless there was bleeding, so being sent home does not mean you would necessarily be at risk for dying and is not at all unusual. How scary it would be to think that! There is a slight risk, yes, but many continue with their normal lives with counts below 30k.
5. I know your financial situation is bad since you have no insurance. That in itself would cause major stress. I think you are on the right track now though by making sure your treatment is paid for before using it (Promacta). I once had the same problem with Rituxan. My insurance denied it, so before I was able to get the infusions, I made arrangements with the drug company to cover it first. It took about 5 weeks for the paper work, but I wasn't stuck with a huge bill that I couldn't pay. It can be tough to juggle all of that, but it can be done (as you are finding out).
I hope things get better for you from this point on. Promacta may very well be the drug that helps you keep safe counts. Keep in mind, it is not designed to keep you at normal counts. The goal is to find the lowest possible dose to stay above 50k and below 250k. That might take a month or two. In the meantime, stay positive and hang in there!
Topic Author
