New to all of this

I get it. This place also helped me when I was diagnosed.

Jay
It is a tough journey. It is not uncommon for it to take a year to find a good treatment or get to some form of remission. We are here for you! If you decide to come to arizona for the conference let me know. I will be there and am happy to talk to you as much as you want. I would have no spleen if not for this group. I owe alot to sandi and everyone else who listened to my rants and craziness and I am here to pay it back. Hang in there.

EmilyK wrote: Jay
It is a tough journey. It is not uncommon for it to take a year to find a good treatment or get to some form of remission. We are here for you! If you decide to come to arizona for the conference let me know. I will be there and am happy to talk to you as much as you want. I would have no spleen if not for this group. I owe alot to sandi and everyone else who listened to my rants and craziness and I am here to pay it back. Hang in there.

Thanks Emily! If I go, I'd love to talk to you. I haven't decided yet. AZ is not the most convenient to get to from CT, so flights are a bit more expensive. I do feel like it would help me quite a bit right now to go. No idea where I'll be in the roller coaster of the beginning of this journey by end of July... Not sure if travel would be a good idea then. Maybe I can just take a few days of 70mg of Prednisone as a short term solution. That seems to do the trick for me! Tho I'll know where I'm at tomorrow with this latest attempt with it. Right now, I feel like i made the right choice over IVIg.

Hello,

My opinion is that TPO-RAs Promacta or NPlate are targeted medicines which attack the source of the problem with least side effects.
Close 50% of NPlate users get into remission.

I had 2 unnecessary hospitalizations and weekly horrible visits sleepless nights with prednisone. Now with NPlate I go once in 3-5 weeks and get one shot.
In one of the days I hope to get remission.

QUOTE from D. Mann "I did not respond at all to steroids. I did the 4 week Rituxin in December. I was slowly climbing and caught the flu. That and meds caused me to crash to 3. Hospital and IVIG got me going but I have slowly dropped from my IVIG peak. Tried a trial month of Promacta and it seems to work well. My doctor also doesn't consider it a long term option due to cost. When he can get Rituxin setup again I am going to give it a second go around. Doc said a second go within 6 months sometimes works. I had no issues with it so gonna give it a go. I think I will try Danazol next if the Rituxin fails."

Hi D. Mann-- Just wanted to mention that my hematologists (2 in the San Francisco area) told me the opposite of what your hemo told you. They told me that a second go with Rituxan (4 infusions) would produce the same effects as the first round. And also that the B cells are depleted for up to a year, so not sure why another round in less than 6 mos would be helpful. My response was partial, a count of 20-25K for 6 months. So my doctors agreed that I should not do Rituxan again, the response didn't warrant the risk. They insisted that I move on to Promacta or Nplate.

Here is a study regarding repeat treatment of Rituxan-- www.ncbi.nlm.nih.gov/pmc/articles/PMC2783818/

I don't know whats best for you, maybe your doctor is right. I certainly don't understand everything about these drugs! But I just wanted to mention what I've been told so we all get the best information. Perhaps someone will chime in who is up to date on Rituxan. Thanks for sharing and good luck with your treatments!

From what I've seen, if a treatment does not work the first time, it will not work a second time. There isn't any logical reason why it would. The problem with doing treatments that may be unnecessary or not useful is the added toxicity. Some of these treatments, especially the immunosuppressants, raise the risk of cancer. Benefit vs risk must be weighed before every treatment.

Today's count was an uninspiring 34. Up from 10 on Friday after about 72 hours (and 4 doses) of 70mg of Prednisone. When this all started exactly 4 weeks ago, I went from 16 the night at the hospital to 33 the next afternoon. Maybe the hospital gave me a bigger dose of Prednisone. No idea. Either way, my body responded better the first time.

Is that was refractory ITP is? When you're body no longer responds to a drug?

I told him I wanted to stay the course. So I have another count next Tuesday and will stay on 70mg for the duration. I was really hoping for 50, which would given me more confidence to push the next count to two weeks.

ytsejam02 wrote:
Is that was refractory ITP is? When you're body no longer responds to a drug?

No refractory ITP is when your condition does not respond to anything.

Fortunately that is a long way from where you currently are on your ITP journey.

Good luck - think of it this way - you can have open heart surgery with a count of 70.

rjsmyth wrote: Good luck - think of it this way - you can have open heart surgery with a count of 70.

I'm not unhappy with 34, I'd just rather be above 50! I don't know if +24 improvement in 3 days is indicative of anything at all. I'm assuming there's nothing linear about any of this!

Jay
I also started out thinking there was a magic number. Eventually you hope for a consistent number where you have no symptoms. If I am not bruising and my my nose is not bleeding, I am pretty satisfied. Getting over the shock of having an illness with no cure, well I am not over that yet, but I have been as low as 2,000 and did not die (or even feel bad) and I ahve been over 1 million and thankfully did not have a stroke! You cannot use rational thought to expect a straight line of change. The goal, I think, is to see some improvement and hope for consistency. I never understood the need to "take it one day ata time" but now I get it. Keep writing to us.

A few other thoughts...i lead a normal life. I work out every day just like I did before being diagnosed. I run 2 times a weeks just like before. I enjoy a glass of wine or a beer whenever I want. You will be ok.

Emily - I hope this doesn't embarrass you, but I am so proud of you! You have come such a long way!

And I travel as my job allows (I am an attorney and run my own firm). Just got back from time visiting vietnam and cambodia. Don't stop living!

No there is nothing linear at all about ITP and we all seem to react differently to the medications, high and low counts. Some people bleed profusely with a low count others do not. Some people get severe fatigue with low counts others do not and so it goes on.

You are responding to medications which is geat news.

As Emily says it is best not to dwell and where possible get on with life.

That's my goal, to get to a point where life is some semblance of "normal". I am more concerned with how a feel in general, rather than the counts. Right now, the counts just feel like a source of stress. And as important as they might be, I feel like the stress is worse than anything.

I'm also not terribly confident in my Hema at this point. I feel like if it were up to him, I would be moving on to Rituxan now. And if that didn't work (he states we should see some response in 4 weeks, but admitted it could take longer, but no response at 4 weeks would likely mean no response period), he want to do splenectomy, and if that didn't work, move on down the line. He seems to be moving so quickly, if I agreed to that (and I wouldn't), I'd probably go through all that by end of summer!! I already told him I don't want to rush into anything. I already reached out to PDSA for recommendations in the CT area. I haven't talked to my primary Dr yet.

Right now, I feel like I'm making life and death decisions almost weekly. Is that normal? I just want it to slow down. I do think that will help me deal with the fear I'm struggling with.

If there's any positive so far, it's that I do feel like time has slowed down. Every hug and kiss I get from my wife and kids I feel more than I've felt before. I'm trying to focus on things like that, and not what's going to happen tomorrow, or a week from now, or whatever.

ytsejam02 wrote: That's my goal, to get to a point where life is some semblance of "normal". I am more concerned with how a feel in general, rather than the counts. Right now, the counts just feel like a source of stress. And as important as they might be, I feel like the stress is worse than anything.

I'm also not terribly confident in my Hema at this point. I feel like if it were up to him, I would be moving on to Rituxan now. And if that didn't work (he states we should see some response in 4 weeks, but admitted it could take longer, but no response at 4 weeks would likely mean no response period), he want to do splenectomy, and if that didn't work, move on down the line. He seems to be moving so quickly, if I agreed to that (and I wouldn't), I'd probably go through all that by end of summer!! I already told him I don't want to rush into anything. I already reached out to PDSA for recommendations in the CT area. I haven't talked to my primary Dr yet.

Right now, I feel like I'm making life and death decisions almost weekly. Is that normal? I just want it to slow down. I do think that will help me deal with the fear I'm struggling with.

If there's any positive so far, it's that I do feel like time has slowed down. Every hug and kiss I get from my wife and kids I feel more than I've felt before. I'm trying to focus on things like that, and not what's going to happen tomorrow, or a week from now, or whatever.

Hang in there! The beginning is the worst. It sounds like your natural anxieties are being compounded by having a hematologist who is type A and in a hurry to run over hurdles at a breakneck pace. I also COMPLETELY disagree with him in forcing the splenectomy as option number 3 after only steroids and Rituxan. That's crazy, frankly, with the number of treatments that are out there today (in my opinion of course. Being a failed splenectomy patient myself may make me a bit more rabid in my "no splenectomy" opinions, lol!). Doctors who are in fields that don't generally feature a surgical component always make me nervous when they want to jump to surgery (are they seeing a chance to perform a procedure that they don't usually get to do? Is that affecting their decision making because they want to perform that surgery?). I know there is a financial component for a surgery and I'm just a really suspicious person about those things. Our medical system is so broken. (As an aside, my son ended up with a suspicious bump on his eye and the doctor wanted to jump into exploratory surgery for it. I said "no way" and the bump resolved on its own after a few weeks. I saved myself thousands of dollars and my child the trauma of an unnecessary surgery by waiting. It wasn't a life or death emergency. So many things aren't!)

I'm so glad to hear that you are searching for another doctor in your area. Frankly I find it UNBELIEVABLY frustrating that finding a hematologist is so challenging. Most don't list their primary areas of interest, and one who is really interested in breast cancer or one who is very interested in anemias are all lumped in the same bucket. Treating cancer, from what I understand from my former hematologist, is very much a series of steps. Do this first, then this, then this, etc. You look at the results and responses along the way, but the process of treatment doesn't require a lot of flexibility or creativity on the part of the doctor. ITP is a whole different animal. Your doctor sounds like he's on a train: stop 1 steroids, stop 2 Rituxan, stop 3 splenectomy. The doctor needs to be responsive to what you want to do with your treatment. My former hematologist was awesome at listening to me. We retried steroids first (they had worked well for me for a very long time), but when I didn't handle them well this time she had recommended Rituxan next. I was worried about the risks of Rituxan and wasn't comfortable with trying it at that time. We discussed it, and I told her I wanted to try Promacta (eltrombopag) next. She understood my concerns, and we did what I wanted, and I felt no pressure to "do it her way" or "do what she wanted." Making these decisions is stressful enough and we can be very emotional (especially if we are on steroids!) and the last thing we need is a high pressure doctor taking away our choices!

Until you can find another doctor (fingers crossed for you on that front), try to space out some of the appointments/blood checks if you can. I can feel the pressure just reading your posts because it seems like they've got you going for blood work every 2 or 3 days and are wanting to "do something!" with every result. Counts can fluctuate for lots of reasons, doing such micromanagement doesn't sound healthy for your mental state! 34K is a safe last count, and you are on the steroids (which you are responding to). There is no emergency need to hurry hurry and do something. I think your care environment is affecting your impression that you are making life or death decisions every few days (steroids surely aren't helping your anxiety either). That is really never how I have felt, no matter how low my count has been. Take care of yourself and keep us posted. Talking about decisions with others who have been in similar positions can help some with the emotional component. Wishing you the best!

momto3boys wrote: Hang in there! The beginning is the worst. It sounds like your natural anxieties are being compounded by having a hematologist who is type A and in a hurry to run over hurdles at a breakneck pace. I also COMPLETELY disagree with him in forcing the splenectomy as option number 3 after only steroids and Rituxan. That's crazy, frankly, with the number of treatments that are out there today (in my opinion of course. Being a failed splenectomy patient myself may make me a bit more rabid in my "no splenectomy" opinions, lol!). Doctors who are in fields that don't generally feature a surgical component always make me nervous when they want to jump to surgery (are they seeing a chance to perform a procedure that they don't usually get to do? Is that affecting their decision making because they want to perform that surgery?). I know there is a financial component for a surgery and I'm just a really suspicious person about those things. Our medical system is so broken. (As an aside, my son ended up with a suspicious bump on his eye and the doctor wanted to jump into exploratory surgery for it. I said "no way" and the bump resolved on its own after a few weeks. I saved myself thousands of dollars and my child the trauma of an unnecessary surgery by waiting. It wasn't a life or death emergency. So many things aren't!)

I'm so glad to hear that you are searching for another doctor in your area. Frankly I find it UNBELIEVABLY frustrating that finding a hematologist is so challenging. Most don't list their primary areas of interest, and one who is really interested in breast cancer or one who is very interested in anemias are all lumped in the same bucket. Treating cancer, from what I understand from my former hematologist, is very much a series of steps. Do this first, then this, then this, etc. You look at the results and responses along the way, but the process of treatment doesn't require a lot of flexibility or creativity on the part of the doctor. ITP is a whole different animal. Your doctor sounds like he's on a train: stop 1 steroids, stop 2 Rituxan, stop 3 splenectomy. The doctor needs to be responsive to what you want to do with your treatment. My former hematologist was awesome at listening to me. We retried steroids first (they had worked well for me for a very long time), but when I didn't handle them well this time she had recommended Rituxan next. I was worried about the risks of Rituxan and wasn't comfortable with trying it at that time. We discussed it, and I told her I wanted to try Promacta (eltrombopag) next. She understood my concerns, and we did what I wanted, and I felt no pressure to "do it her way" or "do what she wanted." Making these decisions is stressful enough and we can be very emotional (especially if we are on steroids!) and the last thing we need is a high pressure doctor taking away our choices!

Until you can find another doctor (fingers crossed for you on that front), try to space out some of the appointments/blood checks if you can. I can feel the pressure just reading your posts because it seems like they've got you going for blood work every 2 or 3 days and are wanting to "do something!" with every result. Counts can fluctuate for lots of reasons, doing such micromanagement doesn't sound healthy for your mental state! 34K is a safe last count, and you are on the steroids (which you are responding to). There is no emergency need to hurry hurry and do something. I think your care environment is affecting your impression that you are making life or death decisions every few days (steroids surely aren't helping your anxiety either). That is really never how I have felt, no matter how low my count has been. Take care of yourself and keep us posted. Talking about decisions with others who have been in similar positions can help some with the emotional component. Wishing you the best!

I am glad to hear my feelings are normal. I really have no idea how much of it is due to Prednisone. I feel like I can cry at the drop of a hat, which is not typically how I am, but it's really unknown to me if it's the Prednisone, or ITP, or just where I am in my journey. The good news I guess is that I'm not getting roid rage!

I was hoping to get a couple of weeks between yesterday and today, but he really wanted Tuesday. I figured, ok, it's more than a week. I'm still on 70mg Pred. I should be fine. I can try to relax, enjoy the holiday. I have a daddy-daughter dance with my middle daughter on Saturday which I'm looking forward to. I'm going to plant my garden. I'm going to live my life for at least the next 7-8 days, and try to smile as much as I can.

Another odd part about the conversation I had with my Hema... his problem with drugs like Promacta/NPlate is that they've only been around for ~10 years, and they don't know what the 20-30 year side affects are. I said "hey, I'd love another 30 years". He mentioned the marrow fibrous side effect, and that it's rare, but I don't see that as terribly different than the side effects of splenectomy. He also made some statement about "... when they teach you about ITP way back when..." I was like, "oh god, what am I getting into with this guy. I need someone who actively deals with this, and not just because he has cancer patients."

To your point, he's very much Stop 1, 2, 3, 4, etc. Which is why I'm thinking about all these things, rather than just focusing on here and now. Part of that is just who I am.

I'm sure this goes without saying, but I can't help but say how much I appreciate yours and everyone's support!

Jay
I strongly suspect the prednisolone is to blame for your anxiousness.
It is far too soon to be contemplating a splenectomy in my opinion.

I would be looking for new Hemo if I were in your shoes.

Jay:
I didn't think of the treatment decisions as life or death decisions, but rather, how those decisions would affect the rest of my life. The risk of dying from ITP is so small, I think it is .067 or something like that, but the impact of the treatments can raise that risk. The risk of dying from infection is greater than the risk of dying from bleeding. So if a patient gets the splenectomy and it fails, they may have to then use immunosuppressants which then raises that risk. You also have to look at the bigger picture which many doctors don't do. Your Hemo's job is to fix the ITP; hence the splenectomy suggestion. But what happens if you need an immunosuppressant later in life for another reason? (and that is exactly what happened to me). Those were the thoughts that I had when I had to make that decision. My Hemo didn't push for a splenectomy, but he did suggest it three times over the years. I declined and he backed off. I never really feared dying from ITP and I have been below 5k a few times. Once I just hung out in the 20's for a few months doing nothing but monitoring every other week. I had a Hemo who didn't panic and in time, we worked well together. He learned to appreciate that I was an informed patient and respected my opinion. It didn't start out that way but of course, I wasn't informed in the beginning and depended on him to guide me. I learned to negotiate and he responded well to that. It helps to have a doctor who is a team player....it's your body.

As far as counts go, I used to tell myself that if my counts were 27k when I got a CBC, they would stay 27k until I heard differently. That was how I stopped fearing a count drop in between CBC's. As long as I didn't see any new symptoms, counts were okay. I woke up one morning with purpura all over my chest. Purple splotches everywhere. I was sure that counts had dropped because I'd never had that before. I went in for a CBC and counts were 50k. It was an odd thing, but that taught me that even having symptoms isn't always cause for alarm. Of course it's best to get counts checked if that happens, but it doesn't always mean bad news. ITP is odd in that you cannot predict counts based on symptoms or lack thereof. People start off thinking they can, but you get fooled eventually. We had a woman here a few years ago who seemed to not respond to anything and she was terrified. Her counts wouldn't go up no matter what she did and she spent months living in fear that this would now be her life. Very suddenly, her counts went up and stayed there. She checks in every once in a while and is doing great. It ended as suddenly as it began. This is why it's best not to make any quick life-changing decisions in the beginning. You're doing great, give yourself some credit!

Funny you mentioned the unpredictability of the symptoms. I've had two "episodes" (ie - low counts), and the first one was revealed via internal hemorrhaging and I was in the 20s! At least, I was 5 hours later when I went to the Dr. Who knows, maybe it was higher when it all started. Then Friday I'm down to 10, and all I have is a couple of small spots of purpura and overall, feeling fine.

I did hear from PDSA today on a list of CT Dr's they recommend. There's also a specialist in Boston that might be worth a consult with, depending on how a switch goes. I'm so impressed and happy with this site, and this community. I seriously am not sure what I'd do with it, and you guys!

We're happy that you like us! Collectively, we're a knowledgeable bunch. Everyone has different experiences, but it seems like eventually, everyone comes to the same conclusions for the most part.

Sometimes symptoms appear with higher (safe) counts when counts drop fast. The body can seem to handle lower counts better when it's a slow drop or when counts have been low for a while. Not always though. My symptoms seemed to get worse the longer they were down there, but usually not until I hit 10k. Everyone is different, and as long as you are vigilant with symptoms (but not obsessed), you'll do okay.

FYI - I sent you a "Quick Message". Hope you don't mind.

Of course not.

Yes, as others have said, prednisone will make you an emotional wreck. Try to relax as much as you can- 70mg is quite a high dose. I stayed on prednisone for about 5mos when I was first diagnosed. In hindsight it probably was too long. But I wasn't ready to go on to anything else. I just needed some time to figure out what to do next.
I've been on the TPOs since 2011 and what I've heard from my hemo and PDSA is that bone marrow reticulin is rare (I've never had it), it shows up on a CBC, and that it reverses when the drug is stopped. I recall one woman here on PDSA who reported having reticulin show up on her CBC, and it went away fairly quickly after she stopped the drug. Also its important to note that people do go into remission from NPlate and Promacta. Several on this forum. One woman in my hemo's office went into remission from Nplate. Her counts went way up over 700K, they stopped the drug. And the counts very slowly drifted back down to normal. Last I heard she had been in remission for 2 years.

I am on my third hemotologist- he is the best! I encourage anyone to shop around if you aren't completely satisfied. As others have said, I agree its way too early to consider splenectomy. I've seen quite a few people go into remission during the first year, sometimes the ITP resolves after just a few months.

Your doctor says he doesn't know what the TPOs will do in 20-30 years, but also we don't know what a splenectomy will do in 20-30 years. And I've seen people who have had what seems to be a successful splenectomy for a time, 2 years, 10 years, even 20 years. But then the splenectomy fails and the ITP is back. They may now be in their 60s and have to take immune suppressants with no spleen. Like Sandi has said, doctors are often thinking quick fix.
I've had ITP for 8 years and one thing I've learned is that the treatments can be worse than the disease. So pick your poison carefully! and good luck to you- enjoy that daughter-dad dance!

Jay
I thought of everything in life or death also. I even signed a DNR convinced I was dying and did not want my husband to be burdened by me! Not sure if was my inexperienced hema who scared me to death or the prednisone. I switched hemos and things got better and got off that awful prednisone.
Emily

EmilyK wrote: Jay
I thought of everything in life or death also. I even signed a DNR convinced I was dying and did not want my husband to be burdened by me! Not sure if was my inexperienced hema who scared me to death or the prednisone. I switched hemos and things got better and got off that awful prednisone.
Emily

Yup, I planned my life insurance policies out so that my wife knew what I thought she should do with the money, in terms of standard budget items, and paying off debt... how thoughtful of me.

I'm so glad you turned that corner, and I look forward to doing the same! I'm feeling a little lucky that my only side effect with prednisone is the emotional roller coaster. I'm not blaming all of it on Prednisone, just maybe 75% of it.

I'll be calling around to the hema's that PDSA recommended.

Hi Posey,
Thank-you! You are basically confirming a lot of the doubts I've been having about what my hema has been telling me. He told me the fibrosis was irreversible, that you stay on NPlate/Promacta for life... Maybe they only part he got right was the high cost. And I already know my insurance would cover it. So why, if I got to that point, wouldn't I try it! Also, from what I read on this site, people do try to ween. So, apparently he's not up to date on that either.
Very frustrating!
I've definitely heard the treatments are worse than the disease. I dislike taking drugs, but hey, life happens. I don't have a dangerous profession or anything, so I just need to pay attention and listen to my body.

He's wrong. The fibrosis is reversible and staying on it for life isn't true. Yikes.

I just made an appointment with a different hema. He was referred to me by PDSA. He's older so not sure how long he plans to continue practicing, but not only was he referred, but I saw he won a reward for compassionate doctors. Not sure if that's worth anything, but can't be a bad thing! And even if he retired in a year, I bet he'd have a good idea who could take over the management of my case.

I won't meet him until next Friday (6/2). Seems so long from now... and I have one more follow up with my current hema on Tuesday. Which, by all accounts makes me nervous as hell considering everything we've talked about. Still, I'm on 70mg of Pred, and will be until then, so if nothing else, I'm hoping to see that thru, and just try to be as mindful of my emotions during all this.

How embarrassing would that be, to break down crying at the daddy-daughter dance with my 6 y/o?

Jay - just stick to the plan with Prednisone and there won't be any decisions to make between now and 6-2, no matter what he says. All you really need is a count. I've seen people get totally amazed when they end up with the right doctor. They feel like the world has been lifted from their shoulders. There are some good ones that say all the right things.

If you break down crying, that's ok. Your daughter will see that you have feelings, nothing wrong with that.