Trepidation

Forgot to mention; I heard back fro the funding people at the hospital. Roche will not pay to have the Rituxan infusion done at the hospital. Something about the Roche funding paying the private clinics. There is nothing that can be done even with my reaction history.

So I asked about the private clinic, there is a doctor of some kind and nurses, but I am told that if there was a serious reaction my help would come in the for of a 911 call.
I am not willing to take that risk, I was present at the last reaction, there is no time for 911 an ambulance and a trip to the hospital.
Sandy Too

Sandy - I think the chemistry of the treatments and potential reactions are even more than doctors can grasp. They can't predict possible reactions. There would have been no way to know that I would have reacted to Rituxan. You also can't predict it, you can only hope that nothing happens.

I had my infusions at my doctor's office. They have a mini-clinic set up where they give chemo and other infusions.

About two years ago, I made the decision to try Rituxan but ultimately backed out.
I live in the US. My insurance company requires the first infusion to be done in a hospital. If it goes okay, the second through fourth can be done at the doctor's office.

Of course we can choose to trust any doctor about any treatment for any disease. Due to my life experience, I believe it's a bad idea to blindly trust and that it's better to learn as much as possible in order to make informed decisions. There are some really abysmal MDs out there, and I and my loved ones have met a few. That's why I'm reluctant to completely trust all.

Sandy,

Part of the problem of trusting doctors is related to the fact that the science is changing so quickly that what they learned in med school may no longer be true, and doctors are now so overworked that they have difficulty keeping up with the new information.

Another part of the problem is that for most hematologists, ITP represents a tiny portion of their practise. They just don't see enough cases to stay up-to-date.

I think it is fine to put your trust in a doctor... if it is the right doctor.

An excipient is the pharmaceutical equivalent of a food additive. It may serve a useful purpose, or may just act as a filler or vehicle of delivery. It may be a preservative, or it may help with the absorption of the active ingredient.

My wife had her infusion done in an infusion center which is part of an outpatient cancer center associated with a nearby hospital. We were not aware of there being doctors present, but felt the nursing staff of a cancer center was capable of handling any emergency.

I pretty much agree with Rob. Any drug, even antibiotics, can cause horrible side effects. Most people just don't bother to look. Even drugs like Advil can cause Stevens-Johnson Syndrome which is a horrible, life-threatening illness. There are people who have had their lives ruined by certain seemingly innocuous drugs. Most people don't think much about it until it actually happens to them. I didn't. After that, you become more aware and cautious.

Sandy Too,

"Question: Why can't ITP patients trust that their physicians will taylor a treatment plan that is the best for them individually?"

Not all Hemo's are created equal -

My first one was supposed to be an ITP expert but I found her to be not knowlegeable at all - as I learned more about ITP I felt not treating was better than the Prednisone rout and she at one point had the pharmacy deliver the 60mg to me at her office and would not let me leave until I took it. (I know much better now - I was more scared of what would happen if I didn't treat because of the way she treated me - that will never happen again!)

My current Hemo and I work well together - I am not treating with a count between 25k to 35K and we have a game plan if an emergency does happen. I trust her to "taylor a treatment plan that is the best for me" but it took a long time to get there.

Cindy Ann

Sandy, an add:

I think your doctors were trying to tailor the plan for you. Suggesting immunosuppressants like Prednisone and Rituxan would be an obvious choice for someone with both ITP and Lupus. They can't help it if side effects occur. It's a risk, and it's a risk for every single one of us. Your IVIG reaction was rare and probably not predictable. Unfortunately, none of us are able to get that fore-sight ahead of time. All of these treatments carry risks, and that is why most of us say that the treatments are worse than the disorder.

Most people go down the treatment line until they find something that works with few side effects. It's different for everyone and there is no particular order, although most use the first line treatments first. It can be hell until you get stabilized, and patience is key, but it is hard. I actually got to a point where I'd rather not treat then go through side effects. I blew off counts and stopped worrying unless I had symptoms. My doctor didn't like that at first, but he got used to it and stopped arguing with me. I'm not suggesting that you do that, but stressing and over-thinking all of this is going to take a toll on you.

Nicely put Cindy Ann


It really is up to the patient to find out as much as they possibly can and question the doctors.
I've been a nurse for over 40 years and since my ITP diagnosis in mid 2014 I've realised several things things

1- Doctors do not always know the answers so it is up to them & me to find them out
2- If I am to make an informed choice I have to learn about my condition so I can question the doctors
3- Doctors don't always know best ( actually Ive known that for years!!!)
4- I know my body better than anyone else on the planet

There is a wealth of anecdotal and well referenced information on this site and on the world wide web.
Patients have to take a degree of responsibility. Doctors can only advise, as patient choice and informed consent are paramount.

Midwest, thanks for your reply, it tells me that if your insurance said the first infusion had to be done at a hospital I am not wrong with my thinking at all.
Everyone, thanks so much you have helped me more than you know.

It was another rough day. So much stress and it make me so darn sick. Communication that's all I wanted.

But part of me feels like I dodged a bullet... but at the same time I am so disappointed even sad that a bit of hope for the future went with it. I try not to get too tied up in hope about treatments but for me hope is also what I live on. When things are really bad, I have hope that it will get better, and there will be better days ahead if I just hang on. This time I had hope too and I although scared and uncertain of the drug the hope helped me to see much better days ahead. Much better and for a good long time like some of you have had. I even bought new Christmas pajama pants and matching slippers for the infusions! It was going to be done right through Christmas. I though it might not only help me but the others having infusions and the staff too, maybe cheer us up.
Plus I can't help thinking did I just make a big mistake by saying no? Only then I just shake my head and say no, call 911 indeed, that's just crazy.

Part of it too is as you all say, about the doctor and connection. I absolutely know what Rob is saying too. Even if it's true, a doctor can't be telling their patient "I don't know" to often or there is another possible loss of confidence. But I talk with my rheumy all the time that way, she knows I know that I know my body best. She knows I know she absolutely cannot predict what it will do and won't do and with what-ever drug. But we talk and we figure out something we are both as happy as we can be with and go from there. Like the methotrexate, it worked great for a while, then my liver tests went south and that was it for methotrexate. same with plaquinil.

To think that it has been since April with this new ITP thing, and now I have to start over maybe with someone new?
Her office didn't even call me back after I left them a message yesterday? What am I supposed to think about that?
Is that because she is done with me? "You don't do what I say and I'm out of here"....is that even legal? Do I still have a hemo? I did hear "she is doing research", a sort of answer when I asked the drug funding person where she is and why nobody is keeping in touch. What's that mean?... she can't stop and make a phone call? Or did she just hand me off to the folks that set up the infusions and think her part was done? I have no idea.

My counts were 60 last week I go again tomorrow so we'll see. I have not heard back from my rheumy, which is odd, but I know I can be assured she is doing something.
If I have to I will ask her for a second referral I guess, I can't do this alone.
thanks,
Sandy Too

Sandy:

I would rather hear a doctor say, "I don't know" than to tell me the wrong thing. They are human and do not know everything. I respect that. My hemo once told me that he could tell me everything about certain types of cancers, but knew little about ITP. I made it my job to educate him, and I did. At first, he would just lay my packet of info on the table and walk out without looking at it. As he began to realize that I had credible info, he started to listen to me. It took a while to break him in, but we ended up having a great relationship. It didn't start out that way.

My experience with doctors is that I prefer one who will not tell me what to do. I prefer one that gives me options and gives me the respect to allow me to consider those options and say no. I like them if they compromise. Yes, doctors can terminate a patient if that patient is not compliant with what they suggest. If you were to refuse treatment and then something happened, he wouldn't want to be responsible or subject to a lawsuit. Oddly, it doesn't seem to work in reverse. If a doctor suggests something and there is a bad outcome, you can't really blame them unless there was negligence. I'd rather not feel the need to blame anyone but myself for making any decision. My life, my decision.

If my doctor didn't call me back, I would assume that he was just busy. They are overworked. If a few days went by and still no call, I would definitely feel slighted. Most of my communication with doctors has been through the staff; I am actually surprised when the doctor calls me themselves. I don't really care as long as the communication flows properly.

Try to distract yourself when you can. I have only ever seen a few people stress over this as much as you are. Please don't take that the wrong way. You are right to question and worry, but you are making yourself sick. The thing about treating ITP is that there is time to think about it, even if counts drop. Rituxan can take 4 to 12 weeks to kick in anyway so chances are you'd either go through it with low counts or use something else to help, like more steroids. I did it that way....went through a month of counts under 10k while getting the infusions. That was also my choice and I survive it.

Sandy Too please stop stressing it will not do you any good at all. A count of 60 doesn't warrant worry.

Thanks Sandi, yes this whole thing has been very hard for me. But it's not due to the ITP.

It's about the confusion caused by the lack of communication ( and respect for me the patient), and that my own choices were completely removed. WHY? It's simple to understand the stress, this is a big decision as you say, it's my life and I was given no information other than you need this and here's the written sheet about the drug.

You know Rituxan, even if you weren't handed one of the sheets. You had questions, so did I.
The only discussion I had about it was one visit, myself, my hubby and my sister were present. There was allot to learn and questions to ask, but the hemo was not engaged. In fact after a short time she said "this is just going round and round you are not ready", got up and as she walked out of the room said "call me when you are ready".
Well, how was I to get ready without dialogue with my hemo?

Now imagine someone new to ITP, I am in no way a veteran. My numbers get very low, not to mention what ever is going on is making me miserably sick. On top of that I am only told that I must do something or I might bleed to death. I was not told I had time to think about it period. Let alone other options.
Where does that leave me with options?

There is no way not to stress at this point, I had immanent death and the offer of a drug that is potentially life threatening for me, and no discussion. Sorry but that's stressful.
Okay then, I don't fold, I go home, I gather the info I did have, I do my best to figure it out myself, you are right I have been here allot, it's all I had.

Then I decide to go ahead, I figure others have and done okay. Well knowing my chances are pretty high a server reaction can occur. I am willing to risk it if I am safe. Only then I find out it's not at a hospital but at a clinic where the only help between me and another severe reaction is waiting for a 911 call? I just found that out a day or so ago and my answer was a swift "no thanks".

So guess what? After all this the last few days, stress is gone!
I still have ITP and my numbers are still dropping. I don't even have a plan at this point.
It's not stressing me. I could care less. I feel like a weight has been lifted.
By the way I am not the only one who knows this mess was not my fault. My hubby and my sister both feel so much better too. We agree that our angels did this for me. I wasn't listening to my body, and the information, I was bullied. I had chosen to go ahead, no discussion/support from my hemo or not. But then somehow this idea of having it done at a clinic appears? It had NEVER even been mentioned. A resounding "no thanks" from me, and my angels breath a sigh of relief and my family and myself are grateful. Trust me, what we have lived through the past years, we are not shrinking violets.

So I apologize to this forum, and everyone who thinks I have been over the top. I thought it's what this forum was for. I know out of line or not, it is the only place where I got any of the information I do have. At the very least what I have been through is a teaching tool of exactly what newbies need to know before they step into the first visit with their hemo. So thanks again, Sandy Too

Sandy - that IS what this forum is for and we are trying to help you every way that we can. I don't know what else can be said. Many of us didn't have Rituxan in a hospital and the reason for that is that the offices or clinics are fully prepared for reactions. The staff checks on patients every fifteen minutes or so (are supposed to) and they know how to stop a reaction once it occurs. Once you decide to get hooked up, all you can do is place your faith in the people there who are trained for it. Most of us found the infusions to be boring. The few who had reactions were quickly helped and resumed the treatment.

I think you have a definite communication problem with this doctor. It happens. You can either continue with him and be unhappy about it, or you can find someone else. Some people go through several hemos until they find one that they are comfortable with. You have choices here.

Your doctor seems to be one of those who uses the scare tactics with bleeding. Of course that is a possibility, but if you stay on top of your symptoms and get help if needed, you'll be okay. He made you feel that you either have to have Rituxan or bleed to death. Those are not the only choices you have here. Doctors are supposed to reassure a patient, not give ultimatums. Yes, these choices are hard and I'm glad that you are taking them seriously instead of jumping in without thinking twice. That is a good thing. But you also have to try to stay calm and realize that your instinct will guide you in the right direction. You can do this!

By telling me I am not being responsible?
I am not as stressed as you think. Confused WAS the correct term. ..rightfully so and not my fault.
That is the lesson.

Called Roche this morning as I received no call yesterday (even though I was told they would) to cancel.
Had a very informative talk.
Roche themselves said that there was a huge GAP in communication with me. They apologized allot and said that it happens sometimes with so much paperwork and so many regulations. The patient just gets forgotten.
Great finally! So they put things on "hold" and email my doctor.

Get a call, finally, from my doctor's office. They apologize. I am told in their practice at the cancer center they have had Rituximab administered 3 times off site in my doctors entire career.
It is only administered off site when it is used off label and funding is not paid for in hospital. Roche then steps up and says yes, but this patient needs this drug, so we will fund a clinic.....again, WOW! finally information.
So this is why things got messed up, they don't do this often.
Then my doctor gets on the phone and we talk, she says first, your platelets are dropping....
then we have the conversation we should have had long ago.....in my opinion only because she knew I was about to bail on the whole darn thing because of the entire way it was handled.
Now we know where we are at, where the ITP is at, we have a plan, we are good.

Note: I have not been offered TPO's (and maybe other drug options)because it's out of line with the proticoll the funding.
Here, Pred, 1st line, Rituximab, splendectomy 2nd line. and TPO's along with other drugs are 3rd line only after Pred, rituximab and splendectomy is done and failed.
If the Rituxan does not work for me however, my hemo said today she will be going to bat for me for funding of TPO's without splendectomy. Thank you doctor.

What I have learned about this site.
It has lots of great people with good information.
But it's not necessarily complete.
That the differences between how things are run in the US and in Canada or maybe other parts of the world is volumes apart. This site is mostly US I think.
That folks still like to shoot the messenger, even a confused messenger.
That I am a very responsible, intelligent person who gets as confused as the next guy in a tornado with lack of communication.
Still I am grateful.
thanks, Sandy Too

Sandy:

I understand your frustration and I'm happy that you finally have some answers that you were hoping for. Who told you that you're not responsible? I know you were confused, and the confusion was something that we couldn't really help you with because the problem was your doctor. I hope that part is settled now and you can move on to the next step.

Yes, healthcare in the US and Canada are very different. It seems that even people in Canada have different versions of healthcare depending on where they live. People in the US have different versions too depending on the type of health plan that they have. There is no one size fits all.

I wouldn't expect this site to be complete....answers for ITP are not complete. The PDSA does the best it can to provide information. Since everyone has different experiences with insurance, costs, treatments, reactions, and responses, there are no concrete answers.

No one is shooting any messengers and I'm sorry you felt that way. We are all trying to help, really, but there isn't much that we can help with as far as your communication with your doctor. I am having communication problems with my new Rheumatologist and it can make you crazy. We're all on the same side here.

Sandy Too

I don't know if you've seen this but it may help you

Anne

www.bloodjournal.org/content/115/2/168

PS a splenectomy is contra indicated if the patient doesn't want one