Jaymun Foundation
Update
| 7/27/2009 |
Another great day for Jaymun. He is improving right along.
(see video)
The plan is to discharge us tomorrow morning and continue treatment via clinic visit.
I apologize in advance if this next part sounds geeky (if I don't evaluate the herbal aspects who will?)
Some doctors have different opinions on the radiation part ...I respect that and am still listening.
Radiation... Last week one of the doctors was urging us to consider radiation now because of the danger that the chloromas would worsen ...pushing on his brain and permanently killing part of it.
Indstead, I have been pushing hard to use a (short?) window of time to evaluate how quickly successful our treatments (combined chemo and herbal) might be. If you've been watching, then you see that window is hopefully widening. Clinical observations are improving by the day, his CSF counts are dropping (from 246, to 32, to today's count: 14!). The only other measure we have not taken would be a MRI to check the chloromas (Dr. Camitta said it is possible the chloromas will go away faster than the floating cells but not predictably so).
However, when I mentioned that continued good news like this might enable a decision to delay radiation, Dr. Camitta said actually, if we get down to zero then that would be the best time to do radiation.
From his perspective:
...if Jaymun does NOT respond properly to the chemo then we do radiation (for last chance rescue).
...if Jaymun DOES respond properly we do radiation anyway (for best chance long term).
Speaking of "best chances" though, I think hindsight proves his best chance last August was NOT radiation. We went home with "weeks to live" and instead of more suffering, we received a wonderful year. And now we have more immune system to leverage. Back then he had precious little immune system to work with (aplastic marrow). Yet we coaxed that along with our herb/spice/mushroom treatments and tried our best with only biweekly blood-labs to coordinate herbal treatments with cell growth cycles.
So this week I started herbal treatments again (herbal log), and daily labs sure reduce the guesswork.
Check out his white counts!
That's a ANC of over 15,000! A nice batch of neutrophils!
So now we can stimulate neutrophil phagocytosis: http://www.ncbi.nlm.nih.gov/pubmed/12770934 and do other powerful things with Ganoderma, Echinacea, Shark Cartilage, etc. All the while we ride the waves back down doing cell cycle arrest, apoptosis, and differentiation with Burdock, Green Tea, Curcumin, Resveratrol, Quercetin, etc.
And since we are activating those neutrophils with herbal treatments they should cross the blood-brain barrier. Sure enough ...read the note I underlined on today's ommaya tap "predominance of neutrophils". I tried this for months this past year with only sporadic diagnostic confirmation ...it's good to see it on paper.
PS. I found some information about one of Jaymun's chemo drugs - hydrocortisone (a glucocorticoid which can cause a leukemoid reaction). I had been told however, that his intrathecals have a small effect outside the CSF ...need to find out if the three treatments he got so far could in any way stimulate neutrophilia.
So now we can stimulate neutrophil phagocytosis: http://www.ncbi.nlm.nih.gov/pubmed/12770934 and do other powerful things with Ganoderma, Echinacea, Shark Cartilage, etc. All the while we ride the waves back down doing cell cycle arrest, apoptosis, and differentiation with Burdock, Green Tea, Curcumin, Resveratrol, Quercetin, etc.
And since we are activating those neutrophils with herbal treatments they should cross the blood-brain barrier. Sure enough ...read the note I underlined on today's ommaya tap "predominance of neutrophils". I tried this for months this past year with only sporadic diagnostic confirmation ...it's good to see it on paper.
PS. I found some information about one of Jaymun's chemo drugs - hydrocortisone (a glucocorticoid which can cause a leukemoid reaction). I had been told however, that his intrathecals have a small effect outside the CSF ...need to find out if the three treatments he got so far could in any way stimulate neutrophilia.
So Jaymun gets intrathecal chemo treatments twice per week. I do herbs on the alternate days (24 hour empty window) so as not to interfere with the chemo treatments. Last weekend I suggested to one of the docs (now that we have an ommaya) to test his CSF fluid on other days to spot different trends moving throughout the week. He advised against, because the data would not be conclusive ...and said "why not work together to achive success and then pat each other on the back ...celebrate together without trying to figure out exactly which treatment gets most of the credit?"
Celebrating sounds good to me ...just not with radiation!
