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ITP "precurser to cancer"??? 11 years 10 months ago #2168

  • mcafiero
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I just got diagnosed with ITP last week. So of course everyone is asking around, doing their own research on ITP on my behalf.

One woman I know is at MD Anderson, a cancer research place (she is there because her husband has colon cancer)... She asked someone named Rosie (I don't think she is a doctor) about ITP and she emailed me,

"I took I upon myself to ask Rosie about Itp she said it was a precursor to cancer, she asked if you had your bone marrow tested"...

Does anyone know about this? So now here I am all worried again. But if it is, I would want to know.

Any thoughts, opinions, facts???

Thanks,

Mark

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2169

  • Joya
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Hi Mark,

I'm very new to ITP as well, but what I know about ITP is that it COULD be a side effect from lucemia, but it doesn't have to be..

When they diagnosed you with ITP they should have done (and probably did) some tests to see if a bone marrow biopsy is neccesary.. If they didn't bring it up I shouldn't worry about it..

Xx

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2170

  • mcafiero
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I talked to three doctors and they all said "I don't think it's cancer". I am sure they aren't just guessing, but have scientific reason to believe that. So I am trying to just chill and trust them.

Thanks

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2172

  • eklein
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If the only odd thing about your blood is the platelet count, you probably don't need a bone marrow biopsy and probably have ITP. If there are other odd indicators in your blood, your doctor may suggest the bone marrow biopsy and it is possible there could be more serious problems including maybe cancer.
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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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2174

  • mcafiero
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The initial call from my doc when I first went in with my symptoms, he called me back and said, "this is weird - your red blood cell and white blood cell counts are GREAT, but your platelets are extremely low!" (he was just a family doctor, didn't seem to know much about ITP. So I think I'm OK from that standpoint.

argh, what an annoying disorder!

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2173

  • server
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  • newcreationchangingdaily
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I don't think it necessarily is a precurser to cancer. Lots of people have had ITP for years and years and that's all they have. Like everyone else said the CBC that first discovered your platelet issue would have other signs too. My gyn was the one who caught mine and alls he said was that I had ITP. I think jumping into cancer issues is premature.
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2185

  • Melinda
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It's the pits being diagnosed with "something" isn't it - everyone you talk to is an expert. Now you could tell that person that being born is a "precursor to cancer" but I guess that wouldn't be very nice would it.

I was fortunate in that I was diagnosed before the internet was invented therefore I couldn't look online & scare myself, I couldn't get emails to scare me. Back then it may have been routine to do a bone marrow biopsy I don't know - one was done and the verdict was no leukemia.

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2193

  • 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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It's like this: low platelets can be a symptom of certain cancers. ITP has nothing to do with cancer and will never lead to cancer.

Most of the time, along with low platelets, a person with cancer will have other odd things show up in blood work (red cells, white cells, etc) or have symptoms such as fevers, weight loss, lumps, etc. If those things occur with low platelets, most doctors will investigate further. Rarely, low platlets can be the first symptom of another disorder such as cancer, Lupus, Evans Syndrome, etc. Those may not show up for several years. It's not worth worrying about since the majority of people with low platelets only have ITP and never go on to another diagnosis.

I wouldn't listen to the hearsay. You don't know anything about Rosie and she knows nothing about you. Is she a doctor? A nurse? The cleaning woman? I think it was irresponsible of her to say such a thing. ITP is autoimmune and caused by antiplatelet antibodies or antibodies that affect production.

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2226

  • NatalieM
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Oh Sandi...how I've missed you. I love all your responses and reading what you have to say. I'll say this...I'm not completely new to the disease. I've had it a year now. And as many here know, I freaked out and thought I had or was going to develop cancer from it. Let me quote what my hemotologist/oncologist (who has been practicing for YEARS and is well versed in the disease) said:
"You do NOT have cancer. I have never met anyone with ITP who developed cancer because of ITP. You have an autoimmune disease that is totally unrelated." As Sandi said, ITP can be a side effect you could say for something more serious IF your bloodwork shows something suspicious. And keep in mind...your blood changes constantly and some people's numbers are all screwed up and they are fine and not "developing cancer" because of it. ITP is something screwy with your antibodies. Technically your blood is perfect and is being produced perfect (i.e. NOT CANCER) you just have some dysfunctional antibodies that cling to your platelets, confuse your spleen, and then they are destroyed. It has nothing to do with the body's ability to produce them. Having said that, people with certain cancers have a low platelet count for other reasons due to everything being wacky. Again, don't just trust someone because of where they are. It could be an easy misconception for someone to make who doesn't know anything about our disease. Relax...visit wikipedia and read that ITP description. I basically have it memorized. ITP is a disease of exclusion (i.e. excluding anything and everything else that could cause low platelets). You'll get through this!

Natalie
*Here's to high platelets!*

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Re:ITP "precurser to cancer"??? 11 years 10 months ago #2230

  • teach
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My experience is the same as Melinda's.

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2241

  • juliannesmom
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If you have a bone marrow biopsy, they can look for cancer and for pre-cancers. I don't recall the specific names, but there were two types of testing run on my kid's marrow: one was reported within a couple days as being negative for cancers, and one took a couple weeks and involved DNA testing (maybe looking at changes in DNA?) for pre-cancers. No cancers or precancers were found, and she was producing adequate platelets, just chopping them up too fast. If the only abnormal lab value you have is the platelet count, you likely have ITP only. Other things tend to go mostly with ITP only, like changes in count in response to illnesses, improvements in count with IVIG, and larger than normal platelet size, meaning that most of your circulating platelets are the young fat ones, since the platelets are destroyed and don't linger long enough to get older and smaller. (By the way, that's another encouragement for ITP patients. The platelets you do have are younger, fatter, and more effective than the older ones most of us keep for a few days.)
Norma

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2251

  • Caroline109
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I've had ITP for almost 30 years and haven't been diagnosed with cancer.
Caroline
Diagnosed with ITP 9/14/1980, the day oldest son was born, & it continued through the births of my other 2 sons and continues now! No treatments until March 2011 when I had a TKR and my count decided to plunge. Sons now almost 25-30. My spleen's still with me.
PKR 09/2008
TKR 04/2010
TKR...

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2258

  • HSheppard
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mcafiero,

I was diagnosed with ITP when I was six. My blood tests were fine, except for the platelet count, but my pediatric hemo/oncologist did a BMB "just to be sure". They sedate children, so it wasn't a traumatic experience. As suspected I only had ITP. I managed my low platelets very well, and even went into remission for a few years.

Then in 2007 my platelets tanked again. My hemo scheduled me for a BMB "just to be sure" it was only ITP, but I chickened out. I went to meet with her I asked if it was absolutely necessary, and questioned her about my bloodwork again. She assured me that the rest of my bloodwork was perfectly normal. If any of my other results had been wacky I would have wanted to do further investigation. But because it's JUST my platelets, I'm not worried, and neither is my hemo.

Blessings,
Hauna

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2295

  • Angel85
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I've never been diagnosed with any sort of cancer and i have had ITP for 20 years.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2325

  • ddunn
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thanks for the encouragement. She told me in the hosp last month she thought i had itp....now she is running all kinds of other tests...CT scan, bone marrow biopsy...my red and whi blood counts were in the normal range......now my white is high, but she says that is because of the prednisone....

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2327

  • Angel85
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That is a sign of a good Doctor. A doctor who wants to rule out any other issues that could be causing the low counts means that they are on your side looking out for you. My doctor always makes sure she checks everything out to make sure there aren't any other issues and i feel better knowing she isn't just writing my concerns off as nothing. She wants me to leave her office feeling confident she has covered all the bases and there is nothing majorly wrong. The pred can make your white count a bit high, mine were always a bit high while i was on it, my hemo wasn't overly concerned about it. If they went up really high, he would check me out and sometimes just give me antibiotics just to be on the safe side.
You've gotta' dance like there's nobody watching,
Love like you'll never be hurt,
Sing like there's nobody listening,
And live like it's heaven on earth.


Lauren

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2328

  • ddunn
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thanks angel. I appreciate your encouragement! I cant wait till it is all over, and i can stop inventing all these things in my mind......and get back to life!!!!!

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2377

  • server
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  • newcreationchangingdaily
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and get back to life!!!!!

that's it isn't it? That's how it feels for me right now. Nothing is the same anymore. I feel like I'm in limbo, waiting for life to resume again. I guess only time can do that. Adjusting life as I knew it. I think my overnight in the hospital opened my eyes to that. I can't, right now anyway, do things the way I used to. I guess when my counts get back up again some sort of normalcy can resume. I dunno
My flesh and my heart may fail, but God is the strength of my heart and my portion forever.
Psalm 73:26
Blessings,
gretchen

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2447

  • Simon
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What everyone else has said: in cancer, there would be more changes on your FBC (and other blood tests) than just low platelets.

ITP is a low platelet count in the absence of any other cause - so if you had leukaemia, for example, your doctor would not have been able to call this ITP - rather, it would be a thrombocytopoenia caused by leukaemia.

Don't worry too much about the white cells being slightly raised on prednisolone. The important thing is what your FBC looks like on no treatment - if the platelets are the only thing that is low, then there really is no reason to suspect any kind of cancer (I might add that one of the things that always alerts me to the possibility of malignancy is an unexplained anaemia - or low haemoglobin).

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #2470

  • julia
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Honestly you can trust Simon hes a doctor :cheer:
Sorry Simon it will be like a busmans holiday on here now, Hope your not doing too many hours!
Julia

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #3140

  • Simon
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It'll get even worse when I start my haematology rotation on 4 months time (yes - I finally managed to bag myself a haematology job!)

Do always bear in mind though that I may be a doctor, but I have never met any of you, much less examined you or taken your history, or seen any of your blood results, and your own doctors should always be the ones you turn to for the authoritative advice in your own individual cases.

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #3311

  • Marta
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I am new to the site and noticed you were online and I have a question... My daughter's hematologist wants to do a bm aspiration. We had one scheduled for 11/09 and went in, but CBC showed a count of 218 - totally normal... So, doc scrapped scheduled aspiration and dx w/ chronic ITP. Well, she hasn't been sick since then, but allergies this past week has caused her counts to drop. CBC this am was at 1. Yes, 1... Called doc again and she said do prednisolone BIDx7days and then schedule biopsy for a month... Here's the question - if counts go back up again (which they always do), she won't do biopsy as she says there won't be anything to look for... WHy not do biopsy when platelets have crashed. AND, after two years, can't we rule out cancers??

Marta
Daughter was diagnosed in April 2008 at 21mos and has received several IVIG rounds w/ or w/o decadron and short term oral steroid treatments. Now considered chronic. Platelets crash during immunosuppression, but always return to within normal range after tx and stay until next illness.

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Re:ITP "precurser to cancer"??? 11 years 9 months ago #3312

  • 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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Marta:

A biopsy isn't necessary for ITP, but maybe there is a reason the doctor wants to have one done. It wouldn't be a good idea to do it when counts are down because of bleeding. I'm not sure it would make any difference in the results, although they might be able to distinguish production problems if counts were lower. I'm not sure what the average BMB entails these days.

I think you probably wanted Simon - I'd like to hear his answer also.

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