10 replies to this topic

[Tedsey]

Not sure if I will get any responses to this...  Although rare, the Naegleria amoeba has been in the news recently.  Just wondering why persons who are infected with Naegleria (an amoeba found in freshwater that usu. enters through the nose and attacks the brain), can donate their organs, but we cannot.  It seems to me that it would be just as or even more risky to receive their organs.  There is an article where a teenage girl donated hers after becoming infected.  If CML is not supposed to be passed on through contact with blood and you cannot "infect" an organism with it, so to speak, why would there be any risk of an organ recipient getting CML?

Just wondering if the risk is real or just discrimination against cancer folk.  Since tumeric cancer "throws out spores" and can spread throughout a body, I can kinda understand why donation in this case may be risky.  But leukemia is a slightly different animal.  Is it because "tainted" blood is everywhere (even in the organs)?  If one survives an average lifetime (or more) with CP leukemia or PCRU, I am not sure I understand why the organs are untouchable.

Teds

[CallMeLucky]

Sadly I think it is risks like the ones in this story that give doctors cause for concern.  In this case it was Lymphoma and not Leukemia but the potential for risk appears to be there.  Since no one knows exacly what causes CML or allows it to proliferate, I think it would be irresponsible to knowingly transplant an organ from an individual with CML or a similar disease into another person.  Just my opinion of course.....

http://www.cbsnews.c...in3987994.shtml

[Susan61]

Hi Teds:  The way I see it, is that they check millions of cells for a cancer cell.  Even if you are PCRU, there can be that one little cell hiding someplace that can grow if you were to donate a organ to another person.  Cancer is a very tricky and smart cancer that knows how to get around things.  Now that is just my opinion.  I have been PCRU for 8 years, and been asked why I do not try to stop my Gleevec.  I feel why mess up a good thing, as long as its still working for me.  I might be wrong about the way I look at it, but I would not want to risk someone else's life.

Susan

[Marnie]

Hey, Teds. . .I believe you can still donate your eyeballs (or at least the corneas).  Too bad I have terrible eyesight with severe astigmatism.  No one wants my blood, my organs, or even my eyeballs.  Maybe I can donate my motorcycle (nope. . .that would make hubby mad, I'm sure).

Marnie

[CMLSurvivor]

I have to agree with everyone. I would not want to be responsible for giving someone CML. I was on the doner list until my CML diagnose. I was very sad when I was diagnosed because I could not donate my organs and save someone's life. I am hopeful more people will step forward to donate there organs and save a life.  

[Tedsey]

For the record, I am not about to sign off on the organ donor list.  I was just curious.  I would never want to give a person CML either.  However, it would be so hard if I were a perfect match for my child or loved one and could not donate to them.  I would hate to watch them die if a donor could not be found.  But hopefully, that will never happen.  Again thinking of the worst case scenarios.  Gotta stop that!

So, if lymphoma could be spread by organ donation, I am sure it is irresponsible for anyone who has a terminal condition to donate (even if they had the amoeba).  I for sure would not want my loved-one to receive a donor from someone with such a parasite, as I am sure no one would want my organs (or my eyes for that matter---sadly, I also have very poor vision).

Lucky's article made me think.  If implanting an organ from a diseased person into someone's body could give them cancer, it is clear that any blood transfer from a cancer patient to a healthy person could do the same (i.e. why we cannot give blood).  So, what are the odds of spreading cancer through mosquitoes or sharing a needle, for example?  I will guess low, but if it just takes one cancer stem cell...

I suppose there are quite a few ways to get a disease then.  Benzene, radiation, etc. may be some ways.  I am sure there are others.  I am at a point where I realize how futile it is to find the source.  If we understand the animal, we can eliminate it.

Wishing all the best to everyone and may they find a way to terminate and eliminate this beast within us very soon!

Teds

[GerryL]

Hi Teds,

Just another thought - if the TKIs can turn CML into a chronic disease, I'm wondering if I was dying from something else, that I wouldn't take the chance of accepting an organ donation from a CMLer rather than dying.

[SunNsand]

In 2001 I had back surgery where the Dr. put cadaver bone in my spine. When I was diagnosed with CML in 2009, my Oncologist was very excited about this and was wanting to know where the bone came from and was going to talk with my surgeon. It's just another one of those thoughts of me wondering if my CML came from that bone. I'll never know, but it's definately in my thoughts of possibilities.

Here's a link to a prior mosquito discussion - http://community.lls...e/105202#105202

[ChrisC]

What funeral?? "Science" may not leave much . . . just sayin'.