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Re:Discussion Moved 11 years 11 months ago #10742

  • sally
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Can ITP really not be healed? Has there been any recent published studies on large populations to show that ITP can't be cured ? I couldn't find any on the internet. Cancer patients are 'healed' when there are no recurrent symptoms for 5 years, as I understand. Itp doesn't have a time frame just some people go into remission 'for the rest of their lives'. There are a couple of personal stories on this site of people claiming to be healed.
I'm a bit anxious about asking as I don't want my hopes dashed but would like to understand this :huh:

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Re:Discussion Moved 11 years 11 months ago #10743

  • eklein
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Cancers are 'cured' because of the definition of the word cured for that cancer. It has to do with probabilities - research has shown that if you are free of a certain type of cancer for x many years, the probability of it returning is a low percentage (I'm sure there is a specific number but I don't know what it is). This is based on seeing many cases and determining the statistical risk of relapse. How do you want to define 'cured' for ITP? We have people on this board who were in remission for over 20 years and had a relapse. Do you want to define it in terms of years? How many? There isn't a certain test you can do that will tell you if something is present in your blood or your dna or anything, so what does 'cured' mean? I have not seen any research on ITP like that on cancer where they say if x many years go by, chances are you won't have a relapse.

The other thing is the mechanism. Cancers can in theory be 'cured' if every cancer cell is eradicated. They come back because stray cells were 'hiding'. ITP is based on the spleen or the liver destroying platelets, in combination with possible issues producing platelets. Even if you remove the spleen, destruction can take place in the liver and you can't remove the liver, so you haven't eliminated the mechanism of the disease from the body.
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:Discussion Moved 11 years 11 months ago #10751

  • 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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I agree with Erica's explanation. There are some cancers though that are never cured and they can be either in remission or controlled. My Mom had a type of cancer (lymphoma) that is not cured, but she has been in remission for a long time. Statistics show that her type of cancer can recur. My old boss has a type of cancer (CLL) that will need to be treated for the rest of his life. It probably won't cut his life span short as long as he treats, but he will never be treatment free or cancer free.

I've researched ITP since 1998 and have never seen an article that uses the word cured. Well, maybe the word has been used in conjunction with splenectomy, but I don't believe that word is accurate at all. ITP can always come back. I've been in remission before (3 years) and I've come out of remission. I've been in remission this time for six years - do I think I'm healed or cured? No. I realize it can recur. I'm okay with that. I lived though it for years and it's really not the worst thing I've ever endured. I might think differently if I were one of the people with chronically low counts who do not respond to anything. ITP would then take on a whole new meaning. I think I've been lucky.

I sat at the same cancer center as my Mom and got my Rituxan treatments. My Mom had chemo there for cancer. I was thankful that I was there for ITP; I had no fear that I would die. My Mom, on the other hand, had a very aggressive stage III lymphoma. I felt much more fear about her. I kept all of my hair - she went completely bald. There is no comparison.

Anyway, I guess it all depends on your definition of 'healed'. If you view it as a possible temporary thing, fine - use the word. Someone could also consider themselves 'cured'. That's fine too, but the realist in me knows that could just be a set up for disappointment. I can't tell you how many people have come here over the years thinking they were cured, only to have ITP return. It's a fact - but again, not the end of the world if it recurs. Many of us have been in and out of remission and we just say "okay, here I go again". You breath and deal with it....life goes on.

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Re:Discussion Moved 11 years 11 months ago #10752

  • Melinda
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Cancers can in theory be 'cured' if every cancer cell is eradicated.

That's one heck of a huge IF !!!


Cancer patients are 'healed' when there are no recurrent symptoms for 5 years

Guess I have some friends who didn't know that rule - wish they had.

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Re:Discussion Moved 11 years 11 months ago #10753

  • 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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Oh Erica - I wasn't implying that you said all cancers could be cured. I was just adding my own thoughts.

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Re:Discussion Moved 11 years 11 months ago #10754

  • eklein
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Now I'm confused!

I was just saying that we define 'cured' and 'healed'. And you are cured or healed until you aren't, or until you die. Same as how a marriage is good until it isn't. Now maybe that is even more confusing... 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:Discussion Moved 11 years 11 months ago #10755

  • 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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No, I get it. I agree.

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Re:Discussion Moved 11 years 11 months ago #10757

  • sally
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I'll pay that one Erica - Helps to reinforce the idea that we should Live in the moment.
Thanks for the replies - has cleared up the confusion and it wasn't THAT scarey :unsure:

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Re: Discussion Moved 11 years 10 months ago #11149

  • freckles
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patti,
with all do respect, assuming you were born and raised in the us, you really do not understand the influence of big medicine in this country. are you aware that a couple of years ago a mom and dad refused chemo for their 13 year old son. a judge ordered their arrest and, (no kidding, you can look it up) they had the fbi, us marshalls, and..wait for it..interpol searching for them. the message, nobody runs from the ama. INTERPOL...to force a teenager to get chemo. hah, you thought you lived in america, but it looks more like the old soviet union. interpol..god help us.

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Re: Discussion Moved 11 years 10 months ago #11153

  • juliannesmom
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Why is so much energy devoted to the squabble between standard and alternative medicine? I'm not opposed to any adult patient trying anything to make them better. One thing does not fit all people. I do believe those making decisions for minors have a duty to try scientifically proven accepted treatment methods first. My child responds to those treatments. I would only branch into "alternatives" if she didn't respond to mainline treatments. I see myself as a steward of her health until she's an adult. That said, I don't judge the decisions other patients and families make. They are in a heck of a position when they have to do this under stress. I thank God for the real doctors and real medications that I credit with saving her life. I also thank God for all the wonderful things provided in nature which may be useful in ITP (but may also have side effects like medications). Now, can we all just get back to NOT assuming we know more than one another and NOT turning off the folks who come here scared and looking for the practical tips they get from patients and families?
Norma

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Re: Discussion Moved 11 years 10 months ago #11165

  • DeeDee Marie
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Norma, that was very well said. That is exactly how I feel. People need to also understand that certain "herbs" due affect certain people. I remember years ago when I was trying different herbal remedies from a friend for sleep and different reasons and had bad reactions to them; just the same as certain medications.
DeeDee

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Re: Discussion Moved 11 years 10 months ago #11168

  • eklein
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One difference is that with the herbs you can't be certain what you are getting, or the strength and the purity of it. And you can't find documentation about the side effects that have occured in studies of the herb. So it is difficult to make a truly informed decision about an herbal remedy.

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: Discussion Moved 11 years 10 months ago #11184

  • freckles
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norma,
your post is rational and reasonable. the two points i would make are, one, just as an example, there is scientifically proven treatments for cancer that cut out or use radiation on cancer, but do not "cure". a cure would be they know what causes cancer and how to reverse it. believe me i know that when someone gets a diagnosis they're so scared they just puy themselves in their doctors hands and just say help me. question, when a terminal cancer patient gets sent home or to hospice when doctors say there is nothing more they can do, why dont we just have a system where we allow attempts at natural cancer cures that some people claim? there is nothing to lose at that point. no need to whine about foregoing life saving chemo. my gut tells me its because it wouldntbe good for the multi billion dollar cancer business if one of those "nothing left to do" patients walked out cancer free.
secondly, it offends me as an american that we send fbi and interpol after a 13 year old who refuses chemo. mnore people than ever have cancer, so the so called authorites are missing something, aren't they?

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Re: Discussion Moved 11 years 10 months ago #11185

  • tamar
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Hi Freckles,

Good to see you posting. You lost me where you say that cancer patients can't try alternative treatments once the doctors say there's nothing more to be done. I believe that they have that option. What am I missing?

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Re: Discussion Moved 11 years 10 months ago #11189

  • tamar
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This is probably the story you are referencing. I'm sure there are several different versions of it out on the web; this one seems to indicate that the parents may not have been in agreement about stopping chemotheraphy after one treatment.
www.kare11.com/news/news_article.aspx?storyid=736533

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Re: Discussion Moved 11 years 10 months ago #11191

  • patti
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patti,
with all do respect, assuming you were born and raised in the us, you really do not understand the influence of big medicine in this country. are you aware that a couple of years ago a mom and dad refused chemo for their 13 year old son. a judge ordered their arrest and, (no kidding, you can look it up) they had the fbi, us marshalls, and..wait for it..interpol searching for them. the message, nobody runs from the ama. INTERPOL...to force a teenager to get chemo. hah, you thought you lived in america, but it looks more like the old soviet union. interpol..god help us.



Freckles, I'm wondering if you have me confused with someone else? I'm with you 100% on pharma, gov't. interference, etc. We were totally threatened this summer when we told the docs to take their meds and leave us alone. It's WRONG. Quite frankly (without opening another can of worms) that whole philosophy of stepping in if social services/courts/etc. *thinks* a parent is making a wrong decision for their kid's health is born out of nothing but godlessness. It was God who gave parents the responsibility to train up their children and it is God to whom they will answer. Nothing more, nothing less. Anyone who steps in between that is wrong. Now back to our original message......

Agree with you completely on all the health issues. :cheer:

patti

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Re: Discussion Moved 11 years 10 months ago #11192

  • patti
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Hi Freckles,

Good to see you posting. You lost me where you say that cancer patients can't try alternative treatments once the doctors say there's nothing more to be done. I believe that they have that option. What am I missing?


If I understand what he wrote correctly, he's saying when people are sent home to die, why don't doctor's/med schools use those patients to do natural medicine "studies" on? What have they to lose in doing so? People always complain there are no studies to "prove" whether or not specific natural treatments work. If someone has been sent home to die, why not go ahead and try some natural treatment on them and see what happens? Bottom line? Money. There is not a natural substance you can patent and make money on because its existed since creation.

I know of one case personally where the person was sent home to die with colon cancer. The guy decided to have IV Vit. C done in high doses. Funny thing. He didn't die. His doctors did scans and told him whatever he was doing, he should continue to do it. In the end, his cancer was gone.

Guess what the FDA is now setting out to do? Remove IV Vit. C from the market completely. I wonder why? Because they know it works. <sigh> The article posted within the past few days.

A drug "made from" a natural substance, is a drug. White willow bark does not work the same in the body that aspirin does. So making a new drug from some sub-part of a natural substance doesn't make that drug "natural," safe, or even as effective as that natural substance. That's just my .02 worth for free. :whistle:

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Re: Discussion Moved 11 years 10 months ago #11204

  • 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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These are some heavy legal issues that are being discussed. Try as I might, I couldn't let this go without comment.

Yes, parents have the right and responsibility to raise their children. But the reason those laws exist in the first place is because there are too many children who need protected from their parents. I'm not saying anyone here is one of them, but Child Protective Services is a good thing. Heck, even animals are protected by the law (and rightly so).

I heard on the news this morning that a toddler died of malnutrition and dehydration. The mother said she knew the child needed medical attention, but she chose to go to a friends house and smoke crack. The people in the community are horrified that this was 'allowed' to occur because the mother had been reported before. Why didn't anyone step in?

You might say that this is a completely different situation, and it is. But what if the mother had stayed and given the child water and food, but the child died anyway because it was too late? That mother still denied her child the right to medical attention which could have saved his life. She chose to handle it on her own. In either case, it is sheer negligence. Should she not be charged because it is her God given right to raise her child?

My problem with this is, where do you draw the line? Just because you believe you are doing the right thing does not make it so. Luckily, the situations discussed here on the PDSA have all had good endings. What if they hadn't? I could never live with the fact that I made a decision that denied my child medical care and they died because of it.

My daughter once had appendicitis. It came on quickly and she had to have emergency surgery. Had she not, she would have died. I COULD have chosen to give her carrot juice as a cure instead, as this article implies: www.natural-homeremedies.org/blog/home-cures-for-appendicitis/

All I can say is, I hope you know what you're doing. I hope you never have to live with bad consequences from a well-intended decision. I'm sorry I don't see things your way, but I do believe that the courts have the right to step in and take action when it is clear that a child is being abused, neglected, or mistreated. It's a very fine line we walk as parents and it's a tough road the entire way. Unfortunately, there are good parents who screw up because they are distracted, misinformed or misguided. Because of that, children do need protected.

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Re: Discussion Moved 11 years 10 months ago #11206

  • Melinda
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And ne'er the twain shall meet.

You know - what it boils down to, is when I meet St. Peter at the pearly gates I'm not going to have him look at me and say "you did that why??"

Patti you cannot assume anything when it comes to what freckles says - he is full of snide remarks and inuendos.

And I say if you don't like it ["big pharma", the government, the President, etc], quit complaining and do something about it - moving out of the country is an option.

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Re: Discussion Moved 11 years 10 months ago #11207

  • eklein
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Sandi,
I agree with you 100%. Really well said, thank you.
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: Discussion Moved 11 years 10 months ago #11209

  • eklein
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Here is the story that freckles referred to:
articles.cnn.com/2009-05-26/us/minnesota.forced.chemo_1_chemotherapy-alternative-medicine-daniel-hauser?_s=PM:US
It happened near where I live. The boy is doing well now, the treatment was successful.
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: Discussion Moved 11 years 10 months ago #11212

  • patti
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And ne'er the twain shall meet.

You know - what it boils down to, is when I meet St. Peter at the pearly gates I'm not going to have him look at me and say "you did that why??"

Patti you cannot assume anything when it comes to what freckles says - he is full of snide remarks and inuendos.

And I say if you don't like it ["big pharma", the government, the President, etc], quit complaining and do something about it - moving out of the country is an option.



I can agree the two will never meet. I have no issue standing before God's judgment with the decisions we make. We are responsible for them. We have attempted to do something about this out of control social services/government so don't assume we haven't. We were in a precedent setting case in our state just a few years ago for this reason. But the outcome we got rarely happens from what we saw. I do not have to move out of the country I was born in. But government has no right into my life or my children's life either.

Sandi - we will to agree to disagree. As a product of the social services system as a young teen I can tell you the kids who need help most often don't get it (as your story indicates). And those that shouldn't be touched are interfered with because someone doesn't like a decision they make for their child (even if the child is safe, okay and doing well). I saw it over and over again. I have more often then not seen the people that should have their kids taken away go scott free, and those that shouldn't lose them only because someone doesn't like how they're raised. And I don't mean abused. If you think who does and doesn't lose their kids isn't political then I don't know what to tell you. There will no good thing come from an interfering government (CPS). And I mean, no good thing. We are responsible for our own actions and their consequences.

So disagree we will. Probably best to end this topic right here.

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Re: Discussion Moved 11 years 10 months ago #11214

  • patti
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Patti you cannot assume anything when it comes to what freckles says - he is full of snide remarks and inuendos.


So far as I'm concerned, he is 100% correct.

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Re: Discussion Moved 11 years 10 months ago #11216

  • 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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Agreed (to disagree). I said all I have to say. Res ipsa loquitur.

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