Jaymun Foundation
Remission ...So Now Radiation, or More Herbs?
02-02-2009
In case you haven't read about it ...yes, Jaymun is finally considered in remission (a few weeks ago)!
Six months after going home this past July without any immune system (neutropenic)
...going home with aplastic marrow
...going home with active CNS leukemia (refractory AML),
Jaymun's marrow has made substantial recovery, his CSF fluid is finally clear of leukemia, marrow back to 100% Donor.
...copies of his test results in the medical section (CSF report,
Marrow report,
Chimerism ZERO! report)
What to do for Jaymun now (besides thank God)?
The original plan for Jaymun's AML relapse included CNS radiation and a second bone-marrow transplant.
However back last July we decided to skip the 2nd transplant
because Jaymun's body was worn out.
Then, because of the brain complications
we decided that radiation would have only added
needless suffering to what everyone thought would be the last weeks of his life.
However, praise God, now we are in a completely different situation!
Jaymun is almost 40 pounds, healthy, active, playful (see videos), and there is no sign of cancer.
What to do now? Go back to the original plan?
To prevent future relapse they normally recommend CNS radiation. Jaymun's doctors say:
"Without radiation there is normally a 100% chance of relapse within months to two years".
...yet they readily admit their experience doesn't include the type of things we did for Jaymun.
Their experience warns them: "As we wait the tumor burden is quietly recovering and growing".
However, our observations the past six months are the opposite
...during only herbal therapy July-October 2008, the tumor burden dissipated (see herbal dosage log).
Looking back (Disclaimer) at our
months of Chinese, Indian, South/North American "herbal" food-medicine filtered through the lens of modern research with my
limited and uneducated analysis skills
...I think the hospital (chemo / bmt) therapy couldn't finish the job because of:
A) Resistant Cancer (the bad cells would not die - no apoptosis)
B) Treatment Modality Limitations (chemo was missing the leukemic stem cells)
C) Complacent/Naive Immune System (ignoring tumor cells) (successive BMT's are generally less effective)
D) Gaps in Treatment Schedule (counter-productive recovery times that exacerbated ALL THREE of the prior points).
E) Toxicity Without Effective Repair (for GI, marrow, brain, etc.)
F) Blood-Brain Barrier Approach (intrathecal vs. intravenous / difficulty crossing)
G) No Dietary Anti-Cancer Plan
Responding to those failures, here are some of the "nutrigenomic" things we did (Jun-Oct 08) to address:
A) Resistant Cancer (refusing to listen to death signals) would also be problematic for immune treatments so we:
...compensated for various apoptosis signaling resistance issues with things like:
Curcumin (Histone Acetylation inhibitor / PI3-AKT modulator)
FeverFew (NF Kappa B)
Green Tea (EGCG) (Bcl-2)
Quercetin, Resveratrol, Ellagic Acid, etc. (synergistically)
Policosanol (cholesterol modulation)
...in some cases in response to "epigenetic therapy" the cancer should self-destruct (immediate apoptosis)
(from oncogenic apoptosis signalling that used to be muffled by apoptotic defects)
(from inherant ROS sensitivity)
(reversing epigenetic gene silencing)
...bone marrow environment contributes to resistance (see Chicago, Houston)
(still organizing the studies for this part... )
B) Treatment Modality Limitations (chemo misses stem cells because they replicate slower)
Signaling issues resolved, we can now implement EITHER broader methods OR more targeted methods so we:
...leveraged bursts of TRAIL production from the immune system, along with interferon, and TNF-Alpha modulation.
Rieshi, Cordyceps, Echinacea, Shark Cart., Burdock, Beta Glucans, etc.
(basically "firing the immune system into the dark" without it first knowing what it was shooting at)
(trigger extrinsic apoptosis)
...insulted cancer cells through ROS production, JNK activation, etc. (study #1 - Natural ROS therapy)
Cat's Claw, FeverFew, Green Tea, Grape Seed, etc.
(trigger apoptosis from different directions)
...promoted differentiation rather than just apoptosis (this feeds into the next point - C)
(studies: #2 , #3 , #4 , etc.) (I could spend a month gathering references like this :)
C) Complacent / Naive Immune System. I think since progressive AML is gradually harder for successive BMT's to treat (eventually blasts skyrocket despite fresh chemo), that shows immunity against cancer has gradually decreased.
So to "reset" that immunity we:
...helped the immune system observe, remember, and attack by simultaneously promoting
dendritic cell activity / Thymus stimulation, T-Cell / macrophage / NK cell activation (study)
...reduced the activation of T-suppressor cells
(herbal histamine blockers) (#5, #6, #7, #8)
...rebuilt symbiotic immune factors supplied by intestinal flora damaged and lost by treatment)
(prebiotic supplements AND probiotic boosts (colostrum, aloe-vera, oligosaccharides - synbiotics if you will)
So I think I know ways to keep the GVL effect alive - and/or restart it if it wears off.
D) Gaps in treatment schedule. It seems to me that traditional chemo/BMT is such a garish dance - bludgeoning the body with crude force all in the hope of catching an elusive immunity window. Infection, graft-vs-host, recovery from toxicity all throw unexpected curves that limit or close that window. If you miss the window - you have side effects piled on top of increased malignancy. Yet, even in "uneventful" AML therapy I noticed some "avoidable" gaps:
The AML G-CSF pothole: to speed recovery they use G-CSF for neutrophil survival ( #9, #10, #11, #12, #13)
Danger: does that instead temporarily protect the cancer, creating a "false education" window for the immune system?)
...Instead we stimulated natural (endogenous) G-CSF production (Maitake: #14, #15)
(in only intermittant bursts to allow alternating immune function)
(natural stimulation was instantly powerful when used)
a nice side bonus to endogenous G-CSF is no bone pain)
Lack of ability to finesse T-cell recovery: Lymphocytes usually recovered slower and T-Cell function was measured by levels of GVHD (graft vs host disease) - something not easily managed even after marrow recovery.
...We stimulated Jaymun's lymphocyte production early on
(Astragalus, Cat's Claw, etc.)
(so we had more initial T-Cells to work with during the early part of recovery from chemo)
No immune modulation directly after chemo (during early recovery): I think the standard plan goes in a bad circle, underutilizing what small immune function remains and dampening the early education (weeks of activity) of a recovering immune system.
...So we started herbal therapy June 20 (five days after his last intravenous chemo)
...Although aplastic, for months we revved up what neutropenic immune function remained - artificially activating the immune system on a regular basis with plant-based saccharides
beta-glucans that prime the immune system, boost mucosal defense, etc.
E) Toxicity Without the Effective Repair. This is the heartbreaking part. The more involved in treatment choices the more this weighs on you. Read the difference in my posts from the 2006 liver crisis, and the 2008 marrow / GI crisis.
So, initially out of desparation (see July 24), but then with intentional focus we did things like:
...help heal his GI from mucosal injury
(Beta Glucans, Vitamin E (mixed alpha/gamma tocopherol), Chlorophyl, Slippery Elm, Aloe Vera, etc.)
...lower infection threat by managing his intestinal environment
(synbiotic and prebiotic) (#11)
...focus on necessary elements of marrow recovery - we shifted between priorities
lymphocites (astragalus, etc.)
neutrophils (maitake, etc.)
reticulocytes (ganoderma, etc.)
...nervous sytem support (Omega 3)
...circulatory support (Rose Hips, etc.)
F> Blood-Brain Barrier Approach I think Jaymun's CNS AML hid out not behind the BBB but inside or astride the BBB. I think this, because chemo that almost cleared his CNS still struggled to finish the job, he relapsed in the CNS and also marrow, the intravenous chemo that crossed the BBB helped clear his CNS leukemia faster, etc. So I think that clearing tumor burden from the CNS with intrathecal chemo can give you a false peace. It would be better to do the CNS job (or at least observe the CNS job get finished) with intravenous treatments that cross the blood-brain barrier. By watching the CNS clear without intrathecals - you would be assured you were treating the entire system. However, that is a problem for highly toxic things things like Ara-C because you only have days to get the job done. So to maximize the short treatment time - you end up hitting it from both directions simultaneously. So you clear the outside and the inside - but how do you know if you got the middle? Especially if the CNS treatments overlap by weeks/months?
...fortunately most of our (non-toxic) major herbal components do cross the blood brain barrier
plant based phytochemicals have an easier time crossing than some drugs (help brain)
...activated T-cells, macrophages cross the BBB
...also the cytokines that we stimulated -- (pretreated with interferon courtesy of cordyceps and the dendritic cells)
...and since we are treating the CNS exclusively from the blood - clear CSF means the BBB itself was fully treated
G) No Dietary Anti-Cancer Plan. I could write a month of posts on this point. Suffice it to say that we were at one of the most advanced medical facilities in the country - and their "diet advice" consisted of cafeteria food, intravenous TPN, and formula drip.
...So we made a dietary shift. Since our diet was not poor or unhealthy before, this was not dumping out our entire cupboards, but it was quality sources (organic, fresh) and specific methods (example:
chopped apples with the peels on) for our existing favorites. The vibrant taste of real food is a good addiction!
(Organic foods, raw milk (cow and goat), fruits and vegetables, whole grains, honey, blueberries, broccoli, asparagus, apples, spinach, mangosteen, blackberries, acai/raspberry juice, pomegranates, onions, etc.)
Science is finally catching up to what common sense preached for years - that raw, fresh, whole plants are the best food and most powerful medicine
We make sure Jaymun gets multiple servings per day
Although scientists are very interested in the potential for specific phytochemicals to prevent or treat disease,
current scientific evidence suggests that plant-based foods are the healthiest phytochemical delivery system
- Linus Pauling Institute (Oregon State University)
What to do now for Jaymun? (the original question)
The things we did for A,B,C, and D - did they work?
Did we compensate for apoptosis problems?
Did we trigger dendritic differentiation?
Did we stimulate the immune system to learn about and target cancer cells?
Or have we only helped with step E - did we "merely" help heal his body (for six months) after the last round of chemo, while Jaymun's immune system lurched back into operation for a few months?
If that is all we did - then we still need to solve (B) by switching up the treatment modality
...and scheduling CNS radiation like the traditional oncologists would recommend.
However, one of the main reasons I pushed for the spinal taps these past months was to know...
Was the tumor burden still there? Would it disappear quickly? Or Slowly? Would it hover?
If it had hovered or increased - we could have immediately jumped to more intensive therapy (radiation?). Now, however, that the leukemia has disappeared - and since we watched it disappear steadily under non-toxic treatments,
I think that considering:
1) The risks to radiation at Jaymun's young age (2.5 years)
to his mind (IQ), thyroid (growth hormones), the possible further damage to his marrow environment
(permanent hypocellularity), etc.
2) The impossibility to accurately predict a better long-term outcome with radiation
(because Jaymun had CNS leukemia in abnormal places (subdural hygroma))
3) The observation of the changed nature of Jaymun's leukemia
(reduced resistance and CNS response to immune therapy, etc.)
...Considering those things among others, I think it is best to wait on radiation (hopefully forever)
The 2009 Plan For Jaymun:
HERBAL MAINTAINANCE PROGRAM:
(days or week per month?) (still working on this)
DIET & LOTS OF LOVE FROM FAMILY :)
TRUST IN GOD - DEPEND ON HIM
I do not think Jaymun will relapse again.
However, IF he does ...if he has CNS relapse in the future, I think God would show us what to do:
#1) We could first resume intense herbal regimen all by itself for a week or two
(there are additional herbs and modalities we haven't tried
- modulating ATP with PawPaw, combining K2, ATRA, D3, and Curcumin, etc.)
(I have better bio-availability methods now for Feverfew, Curcumin, etc. (teas, emulsifying)
#2) We could try intrathecal chemo combined with herbal therapy
(was this what already helped the methotrexate a bit in July?)
(garlic, for example, makes Ara-C 30% more effective)
#3) There will undoubtedly be more drug advances and/or herbal discoveries in the future
(if you want to help, contact the Jaymun Foundation - Box 411, Plymouth, WI 53073)
#4) If all else fails we could still resort to radiation
(I have discovered BOTH radio-protectant herbs for normal tissue, and ALSO herbs that selectively
sensitize cancer cells to radiation by compensating for "convergance pathway" apoptosis defects, etc.
example).
How can you help?
Remind God about Jaymun and other children like him.
Link to this page (or other pages on this site) from your blog:
...so this information becomes more available on the internet for other cancer patients searching for help.
