Vincristine as an option

Hi,I was diagnosed with ITP in March 2011 at a count of 6k. I have been treated with prednisone, dexamethasone, and rituxan. Rituxan works for me for about 3-9 months (with 9 months being the longest). My last rituxan treatment was March 2013. I did a total of 4 rounds of rituxan. Sadly, this last time, it stopped working for me. My doctor was going to try winwhro, however, he called me later on the day saying there's a black box warning on it, so that's out of the question. He always wanted to do a splenectomy, which I have declined each time. So, now, I feel like I'm at a cross-road. My count is dropping, and he has given me the following choices...vincristine, splenectomy (of course), Danazol (which I have declined), and some form of an immunosuppressant (which I'm assumining it's Cellcept). He won't let me try Promacta or Nplate saying I'm too young (I just turned 35 yrs)...he doesn't want me to be taking this for the rest of my life...and there's no known long term effects studdies on Promacta or Nplate. He has given me a week to decide on what is my next line of treatment. Vincristine scares the crap out of me...Danazol too (since I'm a female). Is there anyone here that can give me more insight Vincristine?

I wanted to take a low dosage of prednisone and be at a safe number...but he tells me I can't be on prednisone forever...right now, I think I would like to go with the immunosuppressant route.

Sorry for such a long post. It's my first time posting, however, I've been reading this forum for years...thank you everyone for sharing your experiences. It's greatly appreciated.

Hello. Welcome!

I felt a little confused as I was reading your post. Not confused by what you said, but confused about the advice you have received.

First of all, there are children using Promacta and N-Plate. I would not want to have to make that decision for a child because of possible long-term side effects, but you have been an adult for quite a while now. I was expecting you to say that you were 17.

Any treatment carries a risk, and I personally think that Vincristine is the worst of them all. I wouldn't try that one if they paid me. Those side effects can be nasty. It's not used very often at all, probably because there are much better options now. It doesn't work all that often either.

There are studies that have shown that N-Plate and Promacta have been putting some people into remission. That's been an unexpected result. I don't understand why it's assumed that the TPO's will have to be used for life. Remissions can happen to people any time and not only that, but since the rest of someone's life can be a long time, it's possible that other treatments will be developed in the interim. Something else can always be tried if someone decides to stop the TPO's.

What are your counts now? I also find it odd that he's given you only a week. You're not going to explode in that time period, so I think you deserve to be able to really think this through. That seems like undue pressure and you don't deserve that.

CellCept or Imuran are possible options. They also carry risks, heavy duty treatments there, but I think you should be permitted to make your own decision.

Hi Sandi,

My last day of prednisone was on 5/2. I started it on 2/26 at 60mg since my count crashed to 5k. I am now at 45k (labs on 5/14). In the past, my dr has let me walk out of the office with counts in the 20's hoping that I rebounce out, which most of the time I do. Anything over 30k is good for us. So, imagine my surprise when I'm driving home, and he calls me back, saying that I need to get vaccinated ASAP to get ready for splenectomy...I was like what's going on??! He told me that he's worried because I tend to crash quite fast. It seems he's right, b/c starting on Thursday, I noticed 2 small petechiae on my arm, the next morning, very light petechiae on my chest, and this morning, on my shoulder. When I get petechiae, that means I'm below 10k. So, today, I'm back at 60mg of prednisone.

I will have my next lab on Tues, and I will an appointment with him on Thursday. I am planning to decline the Vincristine and Danazol. I feel like I'm being backed into a corner. I cried in the car, on my way home. I felt so lost. In the past, I strongly declined a splenectomy, but now I'm on the edge. I still feel uncomfortable about it. I'm scared that it might not work or only work temporary...then I will be without s spleen and trying to prevent possible lifetime issues with infection. I have received 2nd and even a 3rd opinion...and they all told me splenectomy is the answer! The last dr even gave me a lecture telling me, I'm like a pain-killer addict trying to find a doctors to give me a rx...meaning, that I'm shopping around for a dr that will do what I want, which is not neccessary the best for me. He said that I already spend too much of insurance money with all of my rituxan treatments and now I'm wanting to try Promacta or Nplate is being selfish on my part. He told me the cheaper route is a splenectomy. Boy, that was one interesting hour for me! He spend most of his time lecturing me on how's I'm abusing health care money and I'm taking away the funds from the poor! Sorry, off topic.

In my heart, I think that the splenectomy is not for me right now. I really want to do Nplate or Promacta, my second choice is Cellcept or Imuran. Like I said, a low dosage of prednisone will be good for me. I feel like I need time to take a step back and just breathe.

I understand what you are going through. I have also declined splenectomy for at least a year. My local hematologist was ready to give up on me after failed prednisone and Rituxin. He did not want me on immune suppressants because of my age. I'm 28. The more I researched splenectomies the more I was against them. He was reasy to send me to the surgeon and i freaked out.There are many permanent risks involved which scares me. He did try me on Nplate, however I am convinced he did not give me high enough doses or try it for long enough. I figured this out when Ann posted the doseage chart on here actually..

Anyways, I got a 2nd opinion at Cleveland clinic and he put me on cyclosporine and said he just wants to do weekly kidney function tests and I am okay with that. Also, he is aware of the studies about Nplate putting people into remission. He said he sees young people all the time and there is no need to panic. He was also up to date on the research waiting up to 3 years on making the splenectomy decision. He applauded me for doing research and will do research and come up with treatments that I feel comfortable with right now. I saw him in April and will go back in June.


As for cyclosporine, it is like cellcept. I've been on it for 5 weeks. It kicked in within two weeks. My counts have been between 50 and 198, which are counts I had not seen since diagnosis. However, I'm on Nplate too, I think for more of the remission component.
My kidney tests have come back normal and I have no other side effects so far!

Anyways, decide which treatment you feel comfortable with and if he doesn't agree, get a 2 nd opinion. There are plenty of articles on here about treatments, but in my opinion Nplate or Promacta might be the next best shot, because of the minimal side effects.

This is going to sound bad but those doctors are making me want to scream. They probably work with mostly cancer patients and are not up on all the latest info and treatment options. I'm sure you have begun, but research different treatments you would be willing to try. Ask people in the group as well! Don't let them guilt trip you into splenectomy if it is not what you want. I now highly recommend seeing an itp specialist.


I'm sorry the doctor tried to bully you into splenectomy. Maybe he should have one and see how he likes it!

Your doctor sounds very good. I have received 2nd and 3rd opinions already. Each one of them tells me sometimes it's bad to read too much on the internet. I always tell them, this is the first time ever that I'm sick...I need to educate myself. I NEED to know what is out there...these treatments are not an easy walk in the park.

Now that I read your post, you're right, I do feel like I'm being bullied into getting a splenectomy. I even had a dr asked me if I ever seen someone dying from ITP or had a stroke b/c of ITP and was paralyzed afterwards...he said he had on several occasions...that I need to stop being selfish and think of my small kids...

Don't be so quick to assume you are under 10k based on the petechiae. That was a sure sign my teen daughter's count had dropped, until it was not longer a sure sign. For some reason, even after remission, she would get petechiae, and we would go in for a count, only to find the count was just fine. Lots of ITP'ers here say they continue to bear the "marks" of ITP after remission.

Vincristine is really wicked stuff. When my daughter was approaching the chronic mark, which was then six months, I asked about treatments beyond steroids and IVIG, and the whole list was discussed. When I mentioned that to a friend who was also a doc, he was horrified that vincristine was mentioned. (Of course, I don't think our docs would have ever actually recommended it. It was just among the list of options.) I looked it up after seeing that horrified look on his face, and I knew why he was so concerned. Vincristine can cause some lifelong problems. We also never were recommended, and would not have considered, splenectomy, unless all else had failed. If ITP goes into remission, who wants to deal with the aftereffects of splenectomy forever?

How often do you get counts, and what is the range? Is your health otherwise pretty good? I think most adults, having the wisdom to stay off skateboards and such, can function at a lower count than children. We didn't treat my teen unless she was under 10 or bleeding. (Initially, the recommendation was under 20, but many ITP guidelines changed during the two years following her diagnosis.) At 30 or greater, she could play tennis as long as she didn't go for the corners. Volleyball was out unless she was 75 or higher. The thing is to control the effects of the low counts, and avoid bleeds. To keep bruising and nosebleeds at bay, try some vitamin C. It doesn't help the count, but it seems to help with vessel integrity. To be able to withstand problems and head off viruses that can drop the counts in some people, live as healthy as you can in general, with regard to diet and exercise.

As for treatments, have you tried a decadron (dexamethasone) pulse? It works great for some on here. It didn't work so well for my daughter, as it kicked her counts up into the 50s, but when she dropped, she dropped so precipitously she had a nonstop nosebleed that landed her in the hospital for an IVIG treatment. (Within months after that, for reasons unknown, her counts started climbing for the first time in over a year, and, at around the two year mark, she was in remission.) She wasn't on dex long enough to deal with side effects over time, but I personally don't handle dex too well. (Took it for poison ivy complication, not ITP.)

We know a doctor who now has ITP. Splenectomy failed (read the statistics - lots of failures), and she's on Nplate. I assume that she wouldn't be on it if she didn't think it was a decent option. I wouldn't assume any treatment was a lifelong option. Folks get remission, and new treatments appear. Think about that before you turn down a treatment that is helping many.

After initially writing this, I just noticed the remark about the "selfish" lecture from the doc. Change docs if one tells you that you are selfish for wanting to be rid of ITP. That's one of the most uncaring remarks I've ever heard coming from a doc. If you are not being treated by a true hematologist, find one. Our pediatrician wanted to treat my teen, and simply consult a hematologist by phone. I didn't go for that, and the hematologists we found soon became our teen's (essentially) primary doctors. We didn't treat any condition without running it by the hematologists, and they found us the other docs we needed for problems that could run afoul of ITP. They were our most treasured resource in this battle. If you live within an hour of a teaching hospital, look there for a hematology group. Hemas stay more current on treatments, and their failures, risks, and successes. They also know better, from regularly dealing with ITP, what the patient is going through.

Good luck.
Norma

I agree with Valerie, those doctors make me want to scream. No doctor should lecture you about health insurance, that is terrible. Is it possible for you to find a more compassionate doctor? Having to deal with ITP is difficult but it is easier with a good hematologist. There are people who have good results from a splenectomy, but you should not chose a treatment with a doc you can't trust.

Since you know you want to try nplate or promacta, you need to find a doc who will work with you and not bully you.


Dru

Wow - the lecture made my mouth drop open. He makes it sound like having the splenectomy would just fix everything and you'd never need treatment again. Possible, but no guarantee, so being so dramatic about it is way overboard. What will he say if you'd have the surgery and relapse? Ooooops, sorry? Your insurance expense is your business and you should not be guilted into anything! It's your body and your life.

I have no problem with doctor shopping to find one that you are comfortable with. Of course you want one who will allow you to explore all options. That is your right. Since they are all valid options, you are not asking for something that is unreasonable or off the wall.

Buying yourself some time right now is probably the best thing you could do. Take a step back and do not allow yourself to be bullied into something that you don't feel is the right move for you. You can always revisit the splenectomy route if you change your mind, but you should be allowed to think about it.

Calm down, breathe, and know that he is being a bit unethical with his statements. He should be trying to make things easier for you, not harder.

I'm normally around 40-50k when I'm in remission from Rixtuan. When I'm on steroids, the highest I ever got at 126k. Depending on where I am with the count, I normally get weekly counts or if I'm doing really good, monthly. I also see my dr monthly too. Yes, I've done the dexamethasone pulse too. Each time I go to my pharmacy to get them, they think my dr made mistake.... :laugh: I do ok on them...mood swings, I trend to have a heavy foot when it comes to driving, and notice that cell phone make a lot of people stupid, thus giving me lots of road rage.

I'm starting to realized it's very hard to find a good dr. Sometimes, it makes me wonder if it's me...my current dr tells me a while back ago that I'm the reason for all of his gray hairs. Makes me question myself...am I a difficult patient? I really don't think so. My dr wants to cure me...I keep reminding him that there's no "cure" for an autoimmune disorder. My current dr is voted as one of the top hematologists in Houston. I just want a treatment that I'm comfortable with and does less harm to my body in the future. I want my count to stablize. I'm really tired of this roller coaster ride. I freak out when it's close to lab day, hoping that it will be a safe count. And the hosptial nurses is starting to know me...that's just not "normal".

I find myself asking why can't there be a treatment for ITP that less harsh on the body...it seems like each side effects for each treatment gets harsher.

I promise myself that I will stand firm on Thursday and say no to vincristine and Splenectomy. Let's see if we can agree on Nplate or Promacta...or even an immunosuppressant. My dr is not going to be happy, but it's MY body!

Okay, you keep saying things are 'not normal'. I don't see anything abnormal about your situation except the things your doctor is saying. Maybe he has good reasons, but he is certainly not conveying that to you by using guilt and bullying.

Your reasons for wanting a certain treatment are valid. You want something that works and has few short-term and long-term side effects. All of the treatments are a gamble as far as that goes, but the ones you want to try have a good track record and few side effects. If you are not comfortable with a certain treatment option, you don't have to do it.

There aren't any easy treatments for any autoimmune disorder. The good thing is that there are lots of options...much more than 15 years ago when I was diagnosed. Things are getting better, but not necessarily easier.

Thanks Sandi! You summarized it excatly how I feel.

And I'm sure in the future, there will be more options available, which is what I'm waiting on...

Slammed,

I totally know what you mean when you say the nurses know you. Do you feel like you are a celebrity in the clinic. I def do and I really don't like it. the front desk lady says, hey Valerie as soon as she sees me. I don't think I have seen a patient in there younger than me. It feels like the other patients are looking at me strangely and ask me all kinds of questions. Because the clinic consists of probably 95% of the patients have cancer I am always being asked what type I have and then having to explain what itp is. It gets very annoying even though I know that most have good intentions.

Valarie,

Yes, that's me, I walk in, and I don't even have to sign in. Everyone knows me in the office, when I call, they recognize my voice! I'm usually the youngest patient in the office and at the infusion unit. I've always been a very healthy person. I never thought that I will have to get so many labs. When I get admitted, the nurses ask me why I'm here b/c I look healthy.

That drives me crazy! I have to say though the nurses at the clinic are great! They are constantly looking at my info and looking for patterns. I think they know more than the doc about itp ( I have two hematologistst, one I go to every week and an itp specialist who is 4 hours away who is the consultant) one day I told the doc how tired and achy I was and he said "well you are young and look great, there isnt anything wrong with you."

However the itp specialist said he has many patients in there 20's and 30's, not uncommon

Slammed, I wonder how much experience your doctor has with ITP patients. YOu might tell him that plenty of us here HAD splenectomies (though I wasn't bullied into mine) which did not "cure" us. In fact, my recent knee replacement gave me a longer remission from ITP than my splenectomy did!

I know my dr treats ITP and TTP patients. He's a fairly young, around early 40's. From what he tells me he treats patients young and older patients with ITP.

I guess my fear is that a splenectomy is that it won't put me into remission, and then now I'm stuck with ITP and a very weaken immune system! I know it's a gamble, it's just I'm never the betting kind of person.

Slammed,

many doctors are used to telling patients what to do and having them do it. I think a lot of people/patients prefer that too. You don't seem like a difficult patient just one who wants to take an active part. For me I like my doc to tell me the options and we discuss it. My doc is willing to do that with me. Even if your doc is one of the tops in your area doesn't mean he is the right one for you. You need someone who will listen to you and not lecture you. He needs to consider you aren't the betting kind and don't want to take the risk..... It is your choice.

Dru

Thank you for all everyone's the wonderful advise!!! They are very helpful for my appointment on Thursday. I have worried myself sick on how this appointment will go. I hope we can meet in the middle or I will looking for a 4th new dr. Houston is such a big city...but lacking in good hematologists!

Dru, you are right. In the past, if a dr gives us a treatment plan, we just go with it, no questions asked. I'm currently reading a book, "Critical Decisions, how you and your doctor can make the right medical choices together" by Peter Ubel.

Slammed,

I know exactly how you feel. A part of me thinks wow splenectomy can get me to remission and the other part thinks all of the negative. Even on days like today where my count is 4, the negative thoughts still scare me.

My boyfriend is an eye doctor. He read this study that said 70% of women patients will do everything the doctor tells them. That is a little scary but I do believe it.

Slammed:

Try not to worry about the appointment. It's not like you're in trouble. You're just a person sticking up for what you want. That sounds like the perfect book for you!

Just got back from my dr's appointment. He finally agreed for me to start Promacta! Now, a new worry...how much will my co-pay.... :dry:

I would go on the pharmaceutical company website and see if there is any financial assistance like there is with Nplate.

YAY! Good for you!

Yes, it's a GREAT DAY! I have high hopes for Promacta.

You should def keep us updated! I'm very curious to see how it works for you!....hopefully really well

Yes, I will definitely keep everyone posted.

Glad your doc appt went well.....hope the promacta works great for you

GlaxoSmithKline does have an assistance program. Your doctor should be able to help you get into it.
Good luck with jumping through the hoops. I did assistance for one month, then the hoops got hoopier and I dropped out when the 'assisted co-pay' ballooned from $80/month/50mg to $380/month/75mg. It would be less expensive to just pay my $3500 annual max-out-of-pocket.

Note: Promacta is my personal favorite treatment for ITP...did it for 3 years. Perhaps some day I can afford it again.
I miss my old insurance ($75/month regardless of dosage).
.