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What is up with that Debbie Downer Newsletter?

  • mcafiero
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  • ITP since March, 2009. Remission until Nov, 2022
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14 years 5 months ago #14660 by mcafiero
I just got this month's PDSA newsletter and thought it was complete garbage. Nothing encouraging, nothing fun, no success stories, no tips on how to live a normal life with ITP. The content was completely contradictory to the sunny happy portraits of people enjoying life in the header of the newsletter.

Just doom and gloom stories about how ITP patients are more prone to hemorrhaging, infections and mortality than "healthy" people. And then a few other total time-waster articles.

I requested to be taken off the list. I don't need my life to be interrupted with reminders of why I need to be stressed about ITP. I know there's not a cure and that most treatments (side effects) are worse than the condition itself. I don't need to be reminded that I have a greater chance of mortality.

So note to the editor: If I want to live life in fear, I'll just watch the evening news. Cheer it up!
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14 years 5 months ago - 14 years 5 months ago #14661 by Tad Moody
I know! I felt the same way. Bummer! :blink:

Makes me feel like I should just give up and go back to smoking, not exercising, drink heavily, eat all the yummy, good wonderful unhealthy foods I desire, and do all the fun stuff that's supposed to kill us.

George Burns - Cigar-smoking actor, vaudevillian, comedian - 1896 - 1996 Age 100.

Jack LaLane - fitness, exercise, and nutritional expert and motivational speaker - 1914 - 2011 Age 96

( I'm just sayin' )
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14 years 5 months ago #14664 by whatthehwegoingtodowiththiss
Replied by whatthehwegoingtodowiththiss on topic Re: What is up with that Debbie Downer Newsletter?
Are those studies accurate? It is uplifting to come on here and it gives courage but reading those articles is sad and anxiety provoking.
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14 years 5 months ago #14668 by iam4ual
I have to agree! To be honest and in the words of a teen, those articles sucked!:evil: I am in termoil enough about ITP and scared that it will shorten my life, I did not need that too. :( They made me sad.

Shannon
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14 years 5 months ago #14674 by mrsjmuirhead
Replied by mrsjmuirhead on topic Re: What is up with that Debbie Downer Newsletter?
I have never thought about dying from ITP. IS there really a greater chance? I have just delt with it for the past 4 1/2 years but do I really need to make life changes? Now I'm kinda scared. I have three babies under 6.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14675 by Sandi
I must say this is the very first time we've received feed back on a Newsletter on the Forum. I have nothing to do with it and haven't even read it yet, but my suggestion would be to submit an article and change the mood of the next issue.

The articles are most likely accurate. I can't imagine the PDSA would publish something that wasn't. There are some negative aspects about having ITP and those are things we have to accept and live with. It isn't all mai tai's and yahtzee. But I can also tell you that I've heard ITP called a 'benign disorder' numerous times and I've heard many people say that if they had to have an autoimmune disorder, they are glad it's 'just' ITP. There are things that are much worse and it's all perspective.

I think I prefer to know the current facts, even if they are not pretty, than pretend those statistics don't exist. I've spent 14 years researching ITP and there are some grim facts, but if anything, it's taught me how to be vigilant and shown me what to avoid. It gets worse if you find out your ITP is secondary and is only a symptom of something worse. Thankfully, that is rare, but I'd rather be aware than surprised. No one likes to think about their own mortality, but I can tell you that the risk is very low and chances are, the great majority of us will succumb to something other than ITP.
The following user(s) said Thank You: sailorsocks67, gkilianek
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14676 by Sandi
Mrs:

I never really thought about dying from ITP either, even with counts under 5. I knew I'd make it.
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14 years 5 months ago #14677 by eklein
OK I totally can't tell who is kidding in this thread. The PDSA newsletter does a great job of reporting on relevant research as well as providing useful first hand tips and also personal accounts of alternative approaches. What did you expect it to be, Readers Digest or the Weekly World News? The topic is an auto immune disease and the purpose is to be informative.

When my counts were in the single digits I thought it was possible I could die from ITP. It is possible, but not likely. If you don't want to know about the facts and research of the disease you have, why would you get the newsletter? It sounds like a good choice to unsubscribe in that situation. You might also accidentally come across some facts in this discussion board though.
Erica

And she was!
Diagnosed May 2005, lowest count 8K.
4/22/08: 43K (2nd Rituxan)
10/01/09: 246K, 1/8/10: 111K, 5/21/10: 233K
Latest count: 7/27/2015: 194K
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14 years 5 months ago #14680 by iam4ual
Guys it is not that I do not want to know everything possible it is just that when you are new to this you are scared enough. I know the risks, but wow I just want to live and see my children's children. WHen I was first DX I went to a dark place. I cried everyday, I could not get away from the computer or I would panic. I researched day and night and it stole my life. Maybe I am crazy and maybe I am the only one it effected this way. But hearing that you can die IS scary. By God's grace and mercy I have gotten past some of it but I still have parts of days that I cry and look at my children and think wow they need me.

I am not at all to the point that I can just say ok I have this and I am okay with it. I am not ok with it.

I am believing God this stuff will go away! I want information but I want hope too!

Shannon
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14682 by Sandi
There is hope! There is a LOT of hope. Most of us have kids and want to be around for them. Those who don't have other family and friends to live for. I just decided that I would be around and followed the rules. I treated when I needed to and I didn't take unnecessary risks. Reading about mortality rates actually made me feel better. I read that the mortality was something like .08....that's nothing! My brother in law was diagnosed with a cancer with a 100% mortality rate. No treatment, no cure. He died 6 months after diagnosis.

I know you're scared. But this is doable, trust me. I went through it for years. I didn't like it, but I survived intact. You will too. ITP is not a death sentence. It's unpleasant, it's annoying and it's invasive on your life, but it's very survivable. There are more treatments now than ever, and thanks to the PDSA, there is information available. They get the word out, whatever that word is. They keep us in touch with each other so we can cheer each other on and encourage each other. They push for the research that does the studies that gives us the statistics we don't want to hear.

I don't think you'd want to read articles that made light of it or made it out to be no big deal. For some people it IS no big deal, for others, it's life shattering. It all depends on the doctors initial reaction, the patients attitude, and the treatment responses. If you want to let it get to you, it will. It will take over your life and push you far into a hole. Just tell it 'no'.

Shannon, you will be okay with it. It's a matter of acceptance. Once you do that, you'll be able to move on and just deal with it like any other problem that crops up in life. I think it's good to hash this out so you can vent your emotions and listen to people who have been there. I keep saying it could always be worse and honestly, looking at it from that angle can really change your perspective.
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14 years 5 months ago #14683 by iam4ual
Sandi
You are thank you for the encouragement..I am working on being positive. I am doing better and think I will do better when I find another Dr. Thank you
Shannon
14 years 5 months ago #14687 by
The newsletter struck me as what it usually is. I glean what I can and file the rest.
We already know that ITP increases risks, Especially for those of us who are older. Nothing new there really. Nice to see it documented though. My wife read the Danish article and said, "DUH!".
And so.....Life goes on.
If I concentrated on all of the ways that I 'could' die today, I'd probably just crawl back into bed.
Life goes on....we go on with it.
.
14 years 5 months ago #14700 by
If you stop and think about it just getting out of bed in the morning is quite dangerous to ones health. What are the odds of getting killed in a car accident? [pretty high if you ask me - 3 dear people of mine have been killed in car accidents and none of them had ITP].
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14 years 5 months ago #14701 by juliannesmom
Replied by juliannesmom on topic Re: What is up with that Debbie Downer Newsletter?
When I learned my daughter had ITP, I read everything I could about it -- good, bad, and ugly. I wanted to know and be equipped to the extent possible. I still do. I also wanted to hear all the good stories of folks who have remission or find ways to enjoy a normal life even with the risk. ITP isn't "a blessing," no matter what some folks say. It isn't as bad as some other conditions, and there are positive things that can come out of having to come to grips with it, but no one wants it. The risk of an ITP death is statistically small, but it is real, and, when it's yourself or your family, it's 100%. We have lost members here. (That's why there's a scholarship.) A child diagnosed about the same time as mine did not survive. We have a member who has had multiple brain bleeds, but he's persevered and inspired many. It's not rosy, and I always resented the less-informed folks in my circle who seemed to think this was no big deal and that I should simply shrug it off and cheer up even as my child was admitted four times in one year. I take the articles for what they are: credible medical journal articles. Perhaps they can show us ways to stay as healthy as possible, be vigilant, and keep our odds as good as possible.
Norma
  • mcafiero
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14 years 5 months ago #14705 by mcafiero
I agree that facts are good. The good, bad, ugly.

I'm just saying, "hey, why not put something uplifting in your newsletter, considering your audience!".

Seems like that should be common sense.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14710 by Sandi
Like I said, submit an article. I used to write for the PDSA Newsletter way back when.

Just to clarify, Audi Gerstein, for whom the Scholarship was founded, actually died of complications of Lupus. She did have ITP though, as well as AIHA.
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14 years 5 months ago #14715 by aurehsalla
it wasn't so much the doom and gloom that annoyed me, but the lack of stats and context in the article! 407 with ITP compared with 4,069 without. OK. So;

“substantially increased long-term risk of infections, hemorrhagic episodes requiring hospitalization, hematologic malignancies, and mortality,”

I'd be interested how many with ITP were being treated, how well they were responding to that treatment, their counts etc etc.

And I think it should've been made more clear that what they mean is that the risk of these things is permanent rather than imminent. It does come across a bit scare-monger-y. i was diagnosed 2 and a half years ago. Did 5 months of pred and have been treated as an outpatient ever since. So far, I have not yet had any sort of infection or haemmorhage that has required hospitalisation, and last time I looked, I wasn't dead. I accept that it's statistically more likely to happen to me than someone without ITP or other medical complications, so I follow the recommended advice of steering clear of contact sports and alcohol, and I generally try to look after myself. But I am one person and there are people who have far worse symptoms than I do, and there are those who have flourishing platelet counts and are currently in remission (and long may it last for them).

For those of you who are new to ITP - have a bit of a panic (it's normal) and then calm down. There's a lot of long words and medical jargon which looks as scary as hell when you first encounter it, but before you know it, it trips off the tongue. After a while, you learn what is normal for you (or your partner/child/parent/friend), what symptoms you can keep an eye on, and when to think "yeah, time to see the haemo". Ask questions, even the stupid ones - we're a friendly bunch and there'll always be someone who's been there, done that and got the tshirt.

A lot of people live with ITP as a minor inconvenience to their otherwise long and happy lives - it's not an automatic death sentence. It's good to keep up to speed and to be realistic about what is achievable, but it's also important not to dwell on it to the point that it consumes you and you don't sleep for 7 months.

Aside from being quite tired and accident prone, my ITP doesn't really stop me doing anything I want to. I did however have a very near miss in my car a few weeks back (idiot pulled out of a side road at speed without bothering to look or slow down) and in that split second when I shut my eyes and slammed the brakes on, apart from expecting it to hurt, my main thought was "please let them find my medical ID". I have a bracelet and there's a dogtag on my car keys. it's given my parents and friends peace of mind to know that if the worst happens, paramedics will find out straight away what's wrong with me and be able to act accordingly. £40 for something which might just save my life one day isn't a huge price to pay - and it's actually a nice bracelet too! You can buy medical ID online, and get it engraved to your specification without the need for your doctor to get involved. If you think it'll help you and your loved ones feel more at ease with the ITP, then by all means get one.
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14 years 5 months ago #14721 by gsh
aurehsalla - sounds like you have some good questions about the danish study. You should contact the author and ask - get some clarification.

I found it really depressing to be honest. I guess everyone is at risk for something and that study has pointed out the specific risks for us ITPers. Increased risk of blood cancers really sucks though. The good thing is the study will attract more research for ITP as a serious disorder.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14722 by Sandi
Very well said!

Is that your real name? Funny, as I was looking at your name up there, they actually said the name on TV. I would not have known how to pronounce it, have never seen it before. He said "Ar-saula" - is that right? I thought I was hearing things!
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14 years 5 months ago #14730 by aurehsalla
No, it's a name given to me by a pagan friend - means 'dream weaver' in ancient norse and pronounced or-eh-salla. I use it for a username as i can guarantee it's never taken! Real name is Gail. :)
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14 years 5 months ago - 14 years 5 months ago #14771 by juliannesmom
Replied by juliannesmom on topic Re: What is up with that Debbie Downer Newsletter?
Sandi, Thanks. I had actually forgotten Audi's lupus. (I guess since ITP was my "pet project" at the time, that was my focus.) I wonder if the increased risk of blood cancer mentioned in the article is really any "consequence" of ITP, versus something that may be lurking and leading to ITP. Bone marrow testing gets frequent mention here, and it seems some hematologists do and some don't. Our doc tested Julianne once she was nine months into the diagnosis, only to rule out things other than ITP. Part of the testing came back early, and relieved us that she didn't have cancer and other problems. The other part, which I never really understood well enough to explain, involved DNA, had to be shipped off to another location, took longer to report, and had the potential to find lurking "pre-cancers," like pre-leukemia and others. That came back clear, and we were relieved. What little I remember about that scary testing is that ITP, or something looking like ITP, could potentially be a sign that something else was lurking. Do you suppose that's the increased risk of blood cancer? I can't understand the connection otherwise.
Norma
  • Sandi
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14 years 5 months ago #14776 by Sandi
Norma - I don't know and I wish articles like that would be more specific as they could actually mean nothing significant to us.

Just an example - I was reading about my blood pressure medication the other day and noticed that it shouldn't be taken by anyone with Lupus. That's all it said. I have been taking it for six months. I mentioned it to my Rheumatologist yesterday and she said that's because it can worsen Raynauds which is common with Lupus. I don't have Raynauds. So, is she right or just going for the obvious explanation with a beta blocker? Is there more to it?

Most articles don't give enough information. I can tell you that I have rarely encountered anyone here who was eventually diagnosed with a cancer, so it's not common. I think the excessive use of immunosuppressants contributes to a cancer risk. Either way, I wouldn't spend time worrying about it.
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14 years 5 months ago #14807 by juliannesmom
Replied by juliannesmom on topic Re: What is up with that Debbie Downer Newsletter?
Sandi,
Thanks for the beta blocker info. (You never know what benefit you might receive from this forum!) I don't have ITP, nor lupus, but I have Raynaud's. It's rarely bothersome these days and I no longer take meds for it, so I forget sometimes to put it on medical history forms. I was prescribed a blood pressure drug for Raynaud's, but it was a calcium channel blocker, which really helped my poor fingertips. If I read a label that said a person with lupus shouldn't take a certain drug, I'd think it was fine for me to take it. You're right -- they should be more specific. Back to the article and the cancer question: in all my ITP reading (and I was a neurotic worried mom who read everything I could find), I never found mention of a link between ITP and cancer, nor any anecdotal information that any ITP patient ever developed cancer. That's what led me to think maybe those are the cases that weren't really "just ITP" all along.
Norma
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14 years 5 months ago #14818 by Sandi
Norma:

Yes, you'd be better off staying away from beta blockers when the time comes. I'm still trying to decide whether or not to stay on this drug or not. If I call and ask for a new one, it's likely that I'll get one that's even worse or has side effects that I don't have now. What to do (rhetorical)?

I've never read anything about cancer and ITP either...never. I have read about patients who developed ITP during and after cancer treatment, but that is a whole different ball game. I suggest we shelf that part of the article for now. Maybe I'll question the PDSA about it and see if we can get a direct answer.
14 years 5 months ago #14826 by
And I'm sure you both know never to just stop a beta blocker but I just wanted to remind you. I've been on one for years.

Chemo, or some chemo can cause TP can't it? I'm not worried about my ITP being a cause of cancer - I can't worry about something like that.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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14 years 5 months ago #14827 by Sandi
Yes, I know not to stop it. I won't.

My Mom actually has had chemo induced thrombocytopenia. Her counts were down to 9 at one point. Much more dangerous for her than it was for me. All of her counts were down at one point. After the chemo, she was fine.
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14 years 5 months ago #14832 by server
reading your post Norma brought a memory to me. When my doctor was training his new NP he made a comment to her that I just let slide, but now I'll have to ask more about it. He said to her "I always check the lymph nodes because ITP is often a precursor to lymphoma."

My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen
  • Sandi
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14 years 5 months ago #14833 by Sandi
This is an instance where the doctor should have watched his wording. "Often a precursor" is not accurate. If it were 'often', we'd have patients reporting lymphoma often (I remember one). We don't. We'd see studies reporting the common occurrence. We don't. We'd have the PDSA reporting lymphoma as something to watch out for. We don't. It's not even recommended to check for lymphomas at diagnosis according to protocol.

When I was first diagnosed, the big issue was that ITP could 'turn into' breast cancer. I thought that was ridiculous and didn't worry about it back then. Just today I ran across an article that stated there have been six reported cases of ITP who were later diagnosed with breast cancer. Six. I'm not sure over how many years that was - it didn't say, but that is hardly a risk.

We can spend time worrying about this, or we can take each day as it comes and just deal with ITP. That's all you have for now and until you receive another diagnosis, you still only have ITP.

I have read the article and did not find it alarming. The majority of patients do just fine. Hang on to that.

I'm not upset with you Gretchen - not at all! Just trying to stave off a panic with this whole topic.
  • youngjoan
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14 years 5 months ago #14841 by youngjoan
Just wanted to mention what I know about the ITP/cancer connection since it is part of this conversation.

At PDSA we've heard from a number of people who have been diagnosed with both ITP and lymphoma. I think that some people have lymphoma at a very low level and are diagnosed with ITP because their low platelets show up first. ITP doesn't lead to the lymphoma, they had it all the time.

Same thing with ITP and cancer of the bone marrow or MDS. It just shows up first as low platelets, but it is really a misdiagnosis or a diagnosis that becomes more apparent in time.

Imuran, a treatment occasionally used in ITP patients, can lead to cancer in a very small percent of cases.

I agree with Sandi...until you have something else you have ITP. I'll also add that the diagnosis of any disease is a wake-up call to look at your life and make any adjustments you can to lead a healthier existence.
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14 years 5 months ago #14855 by gsh
thanks for the discussion.

It sounds like a number of people are diagnosed with ITP when really they have something else (lymphoma) so they never really had ITP. In my first year, I was worried about whether I had ITP or something worse but I didn't get a bone marrow check. I was told that if my platelets went up with steroid treatment then that's a good sign that it's ITP, by way of how the steroids work to suppress the immune system and slow destruction. Having said that not everyone responds to steroids and that certainly does not mean they have something else.