support for itp sufferers family

Just a suggestion but itp sufferers families often get left out of the equation and are bewildered of what support they can give.
Derek

Family members are always welcome to join the Forum and become part of the family here. We have had many over the years.

You could start a thread and ask what type of support people with ITP need. You might get different answers because everyone has different needs, but you could pick and choose based on your loved ones personality.

I personally preferred that life keep going normally and ITP was not the main topic of discussion. I wanted to be treated the same as I was treated before ITP. I did expect a bit of understanding when I was on Prednisone and asked that everyone ignore what came out of my mouth at times. Other than that, I was still me.

Yes you are correct on reflection.Perhaps the last thing one needs is too much sympathy.Normal living is to be aimed for .
Derek

Hi Derek,
I think the thing to remember is there is a difference between sympathy and compassion, I know I don't want sympathy from anyone, ITP has given me some positive things in my life, I have learnt compassion, and that I have a great family and network of friends including a lot of people on this site that are here to listen to me when I am down and celebrate with me when I am good. I have formed a great friendship with a person on the other side of the world whom I would have never met if I didn't come here, we email each other and discuss all things ITP and what else is going on in our lives.
I think compassion is different, just try to understand some of the treatments turn our lives upside down and that is when we really need support. I remember when I was on a high dose of prednisone for months and I was a real mess, couldn't sleep, couldn't think clearly, doing some really stupid things, that is when my family really paid for my condition, I think I must of been so hard to live with. I bet there was times they wish things where different.
I like Sandi prefer life to go on as normal but there are times when I do discuss ITP, if I think someone is truely interested I will explain ITP to them just so people realise that there are these anoying conditions that they may never hear about (educate). I also like to have someone to talk to if I think that there is something wrong with my counts(lots of bruising or other symptoms, that's when I get a bit scared and need to share my concerns with someone) I mostly talk to my husband or the friends I have on the board.

So my advice to family members would be, don't dwell on it but listen and discuss when the person needs to talk. Be prepared as you can for the side effects of treatment and have compassion for the person, not sympathy because life with ITP is really not that bad for most of us.
Milly

My partner was diagnosed with ITP about 5 weeks ago. It has been an incredibly emotional rollercoaster since then, but we are starting to come to grips with the diagnosis and learning more about the future and the condition. I've spent hours next to him in the hospital feeling helpless, with a knot in my stomach and my head racing with fears and frustrations.

He responded well initially to the IVIG but the positive result lasted only a couple days, and now IVIG doesn't even raise his counts. He has his 4th Rituxin treatment Thursday and we should be getting the Promacta this week. He has some complicated dental issues which are raising concerns; he is scheduled to have a root canal tomorrow, and I'm nervous about it but at least it's better than an extraction. He was in the hospital this weekend because his dentist kinda freaked out about an infected tooth, and said that it needed to be immediately extracted. The oral surgeon wouldn't do it because his platelet count was in the single digits. So the hematologist called him up in the hospital and said that they were going to prepare him for splenectomy. We were like - - what? We haven't even finished the Rituxin or tried the Promacta, and they are wanting to rush into a splenectomy? The general surgeon came in for a consult and said, um, no, you can't just do a splenectomy like that with no immunizations, and with an ongoing oral infection. So they gave him antibiotics, the tooth infection went down, and now they are going to do the root canal as a stop gap measure until hopefully his counts are under control.

He has not responded to steroids so far (prednisone and one pulse of decadron) but i'm concerned because the hematologist seems to have given up on any additional treatment is very half-hearted about doing anything else. I've read on here where some folks had responses with decadron but only after weeks of it. He only got one week! We are seriously thinking about finding a different hematologist who is more willing to experiment with different treatment options until we find the right combination, rather than just urging a splenectomy right away.

This site has been a HUGE help for me personally. I have had a very hard time dealing with this but am starting to feel better about it. I'm a worrier by nature and this has been eating at my insides since the diagnosis; my mind continually focuses on worst-case scenarios. But we've come to realize that even with his counts low, he's continuing to have a mostly normal life, as long as there is no bleeding he doesn't have to be in the hospital. Reading stories about how others have persevered and eventually found a treatment that works (at least to some degree) for them is encouraging. It doesn't feel so lonely and scary anymore.

We are going to get the root canal done, finish the Rituxin, start the Promacta, and potentially talk to a new hema about doing more decadron, and go from there. I don't think the splenectomy is something that should be rushed into (and w/ the Rituxin not even finished??) and the fact that the hema was freaking out over the low counts and urging it so quickly makes me feel it's time for a change. He was like "your counts are low, nothing is working!!!" But from reading here, it's clear that it's about perseverance and patience, not panic.

Thanks for reading. Best wishes to you all. My partner is registered here too and I'm sure you'll be hearing more from both of us in the future.

If nothing works then they would usually do a bone marrow biopsy to check the diagnosis but having said that it is usual to try Prednisone for several weeks at high dose before saying it hasn't worked so it sounds as though it hasn't been given a chance. Also you won't want to do Decadron and Promacta together. With Promacta the aim is to get a count not far over 50 and the Decadron would confuse the issue.

The latest international guidelines are at bloodjournal.hematologylibrary.org/content/115/2/168.full which might give you more idea of what you should be being offered.

Thanks Ann Yes they are doing a bone marrow biopsy on Thursday at the same time he gets his last Rituxin treatment.

Since Rituxan can take up to 12 weeks to take effect and he isn't bleeding, I wonder why they would start Promacta so soon. How do you know what is working?
Erica

Erica, His hematologist seems to have assumed the Rituxin isn't working, which seems odd to me since he's only had 3 of his 4 treatments. He was told by the hema that it should start showing results after a couple weeks from the first treatment. We didn't know that it can take many more weeks than that until we read about it ourselves online. So that's another reason why it looks like he's going to be switching to a different hematologist in all likelihood.

It seems to me that this one isn't really giving the treatments a chance to work, and he seems really spooked and panicked by the low numbers. But he's only had bleeding a couple times when it was down to 2. He's been hovering between 6 and 9 currently with no bleeding. The fact that he was trying to schedule a splenectomy consult over the weekend only barely a month since diagnosis tells me that he is not used to having patients that don't respond initially to the steroids.

Bandit - you are doing the right thing by researching this yourselves. Yes, the doctor is not giving things a chance and Rituxan does take more than 3 weeks to work for most people. My counts were something like this: Week 1 - 8k, Week 2 - 11k, Week 3 - 3k, Week 4 - 150k. I was a fast responder by most standards. I've seen many, many people have Rituxan over the years and only a handful have responded by the second or third week. Of those people, probably half were also having another treatment at the same time as well, so they may have had the rise because of that.

There have been a few studies about using Rituxan in combination with Decadron, and it supposedly can give a faster and longer response. Too bad it wasn't used on your partner because he may have benefited from that.

Good luck and let us know how he is doing.

Thanks Sandi. It's all so overwhelming and I think we automatically assume in the beginning that we should just follow what the hema says without question and leave it entirely up to him. We are definitely no longer feeling that way. Taking out the spleen is a huge decision that might not pay off and we aren't going to do it, at minimum, until other options have been tried and given the chance to work.

Update on my partner:

5 (11/8/11?)
10 (11/15/11?)
15 (11/22/11)
121 (12/1/11)

He is 3 weeks out from his final Rituxin (I believe... the dates are starting to get so fuzzy, with all the chaos, travel for the holidays, etc). Obviously very pleased so far!!

Good number today! Congrats to your partner. Hope they keep going up and stay up!

Great news!

Thanks all We are thrilled.

Slight correction to the above, he is two weeks out from his final Rituxin. He has also been on Promacta for a week. So time will tell what will work and what doesn't, but i'm encouraged that he has responded to the treatment at all. Steroids did nothing and IVIG worked at first for a couple days, then stopped working at all. We know it's a roller coaster but now just enjoying this positive news.

Glad to hear your partner is responding. It took over a month for my first round of Rituxin to kick in. 16 months later I received another round wich kicked in a little sooner. 2 years of within range counts. I am however feeling an energy decrease lately, so feel it is time to have a count done. I never wanted sympathy just compassion/understanding of what ITP does to our bodies. My first dose of Rituxin lasted for 16hrs. My wife sat with me the whole time. She came with for all of the first round and the first treatment of the second round. After that it was not such a big deal so I went on my own. She also sat with me through two Platelet transfussions. She has been strong through this ITP battle and two depression phases. One time I had to see a different Oncologist and the first thing he asked was, when are we going to schedule a Spleenectomy. I am like WHAT. I said that is really not an option right now. This was after the first round of Rituxin. I said there are other treatment options and a spleenectomy is permanent with no guarantee. So, not going to happen. Thinking back on my life at the time of diagnosis, I am sure STRESS is what triggered my ITP. Hope your partners counts keep increasing!!

When I started on this ITP roller coaster 8months ago I never knew what to expect and this site has given me and my family an invaluable amount of information about a condition few even know about. I live in the UK and my haematologist is excellent.I am now down to 7.5 mg pred and 2g Cellcept and will get the flu shot in eleven days time with the dead virus given subcutaneouly.My platelet count was 63(k)yesterday and I will get checked in 12 days so will play Sand's mind game on counts.At least I no longer think of ITP all the time and there are plenty of options available without going for spleenectomy early on.

Derek