Tuesday, October 17, 2017

Medical: Bad news from a good image

My lump is "too big"

In an idealized course of treatment, each round of chemo would have delivered a 1000:1 reduction, going from, say

100 Billion cells  "before"
100 Million cells
100 Thousand cells
100 Cells

And in these cases, or in any similar "order of magnitude" reductions after each round the lump would have already been driven to undetectable size back in mid September. But that did not happen.

Mine's been more like 3:1 per round, which results in more like a 30:1 reduction:

Soup ladle
Serving Spoon
Table Spoon
Teaspoon

So we got a 30:1 reduction (in total) where 1,000,000,000 : 1 (or even 1,000,000:1) would have been more normal--or certainly more welcome.

And rather than have an "it happens sometimes" explanation, they have a stronger hypothesis: my lymphoma cells were found have extra mutations in early tests that we didn't have to think about until treatment is underway.

Now that treatment has run its first phase and my lump is still noticeable, it raises the possibility that  extra mutations could be (a) mutations that just happen to resist the exact chemo chose for the first rounds or, more ominously (b) my cells are particularly heedless of the self-destruction signals in general, which is bad because ALL rounds of chemo work on trying to get cancer cells to self-destruct.

There's a small chance, too, that the "immune boosting" diet that I've been eating has served mostly to boost my cancer-of-the-immune cells, just like early Luekemia patients died faster when given blood-boosting ( anti-anemia) vitamins. Or like the way a fetus gets priority on nutrition over the mother.  So my supplementation with spirulina ends today (but, hey here's a backhanded proof that spirulina is good for your  normal immune system)

IF the mutations have been decisive (or prove to be so), then the next option will be not an Autologous Stem Cell Transplant (from myself) but an Allogenic Stem Cell Transplant (from an unmutated family member).  To preserve the option of rapid action, we start today letting my siblings know that they will be asked to take a test to see if they are a match.

To answer EO's question from the comments: The stem cells are extracted from the donor's circulating blood...out one arm, through a collector, and back into the other arm.  I talked to a friend who'd donated (alongside his brother) to replace his mom's stem cells.  The HLA test is done for donor-compatibility. I don't know if there are risk markers on my cells that they can look for on my donors'

And...another reason why they might prefer a donor's immune cells is that the donor's immune system may recognize my cancer as alien even if my own system did not.  In fact, by definition, my Lymphoma has done as well as it has because my own immune system was good with it. But once you replace your immune system with somebody elses, there's no going back (one can never  re-make one's own)



5 comments:

EO said...

Are the stem cells extracted from the sibling's blood or the sibling's bone marrow? Does each sibling get tested for non-mutation?

busiestday said...

The stem cells are extracted from the donor's circulating blood...out one arm, through a collector, and back into the other arm.

The HLA test is done for donor-compatibility. I don't know if there are risk markers on my cells that they can look for on my donors'

EO said...

Is there any reason to believe that a non-sibling would be compatible? Would it help to have non-family members tested? I volunteer if that is of any use. And I'm not a robot.

busiestday said...

Thanks for the offer, EO!

They prefer siblings, in the hopes that it provides a close-as-possible match (even on proteins that they don't test for) I think then come children. Then it gets thrown open to the whole world of strangers, though ones family and friends are always welcome to get tested.

https://bethematch.org/

I put myself in the registry back in 1995 or so as a willing donor (at business school, it was a community project), and will now have to remove myself (cancer disqualifies me now...and, if I left myself in there, I'd come back as my own best match, which they say has happened before)

Little Black Dress said...

Yuck. Not a fun ride.

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