So, I went to City of Hope today to get all the 'teaching meetings' out of the way for the BMT. I'm beginning the cytoxin/neupogin stuff this Friday to get ready for a transplant around October 4th.
How does the dirty kitchen floor come in?
Well, on the way home, my daughter, who drove me down there, asked me this, using a kitchen floor analogy:
"I GET an allogenic transplant. I get it. They basically give you someone else's immune system. I don't get an autologous transplant. It's like finding out that someone has thrown mud all over your kitchen floor. You spend hours and days cleaning it, scrubbing every inch, until it sparkles (the 'induction chemo'), After it's all sparkling clean, you take the muddy water you just got OUT of the kitchen ....and rinse the floor with it, making your floor dirty again.
Isn't that what they are going to do to you? They've spent all these months cleaning the myeloma out of your system. Now they are going to make your cancerous bone marrow manufacture more stem cells, take them out...like dirty wash water, kill your immune system and then PUT THE CANCEROUS BLOOD CELLS BACK IN! (Yeah, she shouted, so I did....forgive me...).
How exactly is that supposed to help?"
Exactly how am I supposed to explain this to her? She's not stupid; college graduate, owns her own business....not stupid. Neither am I...but I wasn't able to explain it so that it made sense to her. Someone here got some clear words to explain this idea?
Thanks.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Dirty kitchen floor (question from my daughter)
This is a completely reasonable question to ask. The answer, however, is fairly simple.
The high-dose chemotherapy (typically melphalan) before your transplant, which is intended to wipe out as much of the remaining myeloma in your system as possible, will also wipe out your bone marrow and all the stem cells in it that make blood cells.
So if you didn't get an infusion of stem cells -- your own, or someone elses -- you would most likely die.
Think of your body as a planet that has been taken over by aliens which have built factories that are generating poisonous air pollution. Your initial therapy, most likely with targeted novel therapies, wipes out a lot of the aliens and their factories, and it also cleans most of the pollution out of the air.
The air will still be a little polluted, but hopefully not much.
But there may still be some of those aliens and their poison factories on the planet surface.
So you suck up some of the remaining air, even though it's polluted, store it somewhere safe, then use powerful bombs to wipe out most of the rest of the aliens and their poison factories.
Unfortunately, those powerful bombs also wipe out everything that's left of the planet's atmosphere.
But then you let the (somewhat polluted) air out of storage, so you've got air back. It may not be perfect air, but it's a lot cleaner than when there there were aliens and their poison factories everywhere, and, hopefully, you've also wiped out most of the aliens and poison factories, so the air will stay relatively clean for a long time.
The high-dose chemotherapy (typically melphalan) before your transplant, which is intended to wipe out as much of the remaining myeloma in your system as possible, will also wipe out your bone marrow and all the stem cells in it that make blood cells.
So if you didn't get an infusion of stem cells -- your own, or someone elses -- you would most likely die.
Think of your body as a planet that has been taken over by aliens which have built factories that are generating poisonous air pollution. Your initial therapy, most likely with targeted novel therapies, wipes out a lot of the aliens and their factories, and it also cleans most of the pollution out of the air.
The air will still be a little polluted, but hopefully not much.
But there may still be some of those aliens and their poison factories on the planet surface.
So you suck up some of the remaining air, even though it's polluted, store it somewhere safe, then use powerful bombs to wipe out most of the rest of the aliens and their poison factories.
Unfortunately, those powerful bombs also wipe out everything that's left of the planet's atmosphere.
But then you let the (somewhat polluted) air out of storage, so you've got air back. It may not be perfect air, but it's a lot cleaner than when there there were aliens and their poison factories everywhere, and, hopefully, you've also wiped out most of the aliens and poison factories, so the air will stay relatively clean for a long time.
Re: Dirty kitchen floor (question from my daughter)
Hi Dianalad, i think that you should ask your oncologists for a clear explanation about this. In my case, I was somewhat reassured that my stem cells would be mostly 'clean' of cancer since I had cytoxan before the harvesting. This chemo was very strong, and would have destroyed a lot of circulating blood and marrow cells. Then I had 'neupogen' to grow up new stem cells for harvesting.
Friends asked me the same thing...who was my donor going to be. When i SAID it was 'myself' they were puzzled. They also brought up the issue of still having cancer cells in the stem cells. i think we can't know just how 'clean' our stem cells are. We do know that they are a lot cleaner than they were, before, due to all of the strong chemo given. It's quite controversial for some!! Some patients are dead set against auto transplants...it's all here on the Beacon pages to read too!
I have been on remission for more than three years now, although I think that is shifting again towards perhaps having to go back on treatment. Basically all of my treatments have bought me quite a bit of time. The Velcade and Revlimid were very instrumental in pushing me into a remission also , and I will never know what role the ASCT played, except that statistically and according to 'standard of care' it probably helped!
I am not sure I could have had an 'allo' transplant 'upfront', for reasons of my age and availibility of donors. Also 'aLLOS' are more difficult to recover from, as you can read from those who had allo
transplants. I understand that in the U.S. it may be an insurance matter, as to whether an 'allo' is available to you also!
There isn't a clear answer, but it's up to you and your doctors to steer the best course for you. Hope that helps! Keep us in the loop too!
Friends asked me the same thing...who was my donor going to be. When i SAID it was 'myself' they were puzzled. They also brought up the issue of still having cancer cells in the stem cells. i think we can't know just how 'clean' our stem cells are. We do know that they are a lot cleaner than they were, before, due to all of the strong chemo given. It's quite controversial for some!! Some patients are dead set against auto transplants...it's all here on the Beacon pages to read too!
I have been on remission for more than three years now, although I think that is shifting again towards perhaps having to go back on treatment. Basically all of my treatments have bought me quite a bit of time. The Velcade and Revlimid were very instrumental in pushing me into a remission also , and I will never know what role the ASCT played, except that statistically and according to 'standard of care' it probably helped!
I am not sure I could have had an 'allo' transplant 'upfront', for reasons of my age and availibility of donors. Also 'aLLOS' are more difficult to recover from, as you can read from those who had allo
transplants. I understand that in the U.S. it may be an insurance matter, as to whether an 'allo' is available to you also!
There isn't a clear answer, but it's up to you and your doctors to steer the best course for you. Hope that helps! Keep us in the loop too!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
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