The First Diagnosis: Metastatic Adenocarcinoma of Unknown Primary Origin
(local pathologist and Drs. - Aug 2006)
The Second Prelim Diagnosis: Can't confirm cancer, but don't know what it is
(City Of Hope, Oct 2006)
The Second Diagnosis: Peritoneal Mesotheleoma (City Of Hope, Jan 2007).
Manifestation: Tissue-paper thin tumor covering much of the inside of the peritoneum.
Cause: Unknown, but possibly related to asbestos exposure, maybe many years ago.
Outward Symptom: Gathering of fluid (Ascites) in the abdominal space;
originally the rate was about 1-liter per week.
Topped-out waist was 40-inches.
Side Effect: General loss of strength and stamina.
Somewhat akin to the system's sending fluid in a blister to "heal" the
trauma of a burn, my system sent this fluid to "heal" the trauma of the tumor.
This fluid was composed of valuable protein which was taken from what little
tissue and fat that I had -- hence the strength and stamina situation.
It was relatively ineffective at healing, but was not re-absorbed into
my body and hence the gathering in my abdomen.
Quickly I looked THINner than usual (except for the recurring pot belly)
and recalled what Gen Wainwright looked like when he was liberated from a
prisoner of war camp after WW-II.
Relief Treatment: Carefully (via sonogram) insert a needle in the abdomen
for the fluid to drain (Paracentesis). After several such processes,
then a semi-permanent inter-Peritoneal catheter was implanted.
Discovery/Evidence:
Does NOT show up in colonoscopy.
Does NOT show up in endoscopy.
Does NOT show up in blood samples.
Does NOT show up in urine samples.
DOES show up in laproscopic (light and 'scope) exploration of abdomen.
The elevated value of my HSCRP blood value seems to be correlated, but is not sepeific.
Basic Treatment: Chemo-therapy; with Pemetrexed/Alimta and Cisplatin/Platinol;
first session was on 16 Feb 2007,
subsequently scheduled at 4-week intervals
with each session preceded by a paracentesis of about 4-liters.
Side Effect: OK for about 2 days, then a general feeling of blaaaah
and diminished appetite, getting worse for a few days and then slowly better.
The chemo messes up the Potassium and Magnesium levels, which messes with the
heart, and exacerbates pre-ventricular contractions, and rate, and pressure.
Cure: Not likely, but might be tamed.
Guess it's like a fire which can be contained but never extinguished.
Longevity: This is said to be life-shortening, but the wisest know not by how much.
General feelings:
There's no pain associated with this, just discomfort and blaaaaahs after treatments.
If I don't think about it, then I'm pretty much ok.
If I don't climb stairs or lift much, then I'm pretty much ok.
Stamina improving but still a problem, get naps more often than a year ago.
Timing: Do NOT really know how long this may have existed. Waist 2-yrs ago was 38.
Do NOT know if that was just old-man fat spread or the slow gathering of fluid.
Things got noticeable to Dr. in April '06
and REALLY took off after the colonoscopy.
Later Developments:
The paracentesis of 22Aug'07 produced only 0.1-liters,
so there are currently no draining-plus-chemo sessions scheduled,
just monitoring for likely similar treatments in the future.
Am gaining back some of the lost fat and body/flesh tone;
wrist-watch almost back to original tightness.
My old 34-inch slacks are now rather comfortable.
Folks who see me infrequently say that I'm getting to look more like my old self;
the road back is much slower than the road down.
Dr. says that my condition is "Stable"; was still seeing me once a month since Aug,,
but as of Dec that's now set at 3-months.
Napping is now very seldom.
Weight, had been swinging between 140 and 168,
as of Apr'08 is hovering right at 155, which seems ok.
My HSCRP had been as high as 2.4, but now at 0.2 nicely.
As of mid-June-2009; still "stable" and doing just fine;
planning several vacations this year
Have seen both the Oncologist and Cardiologist recently and they
said that things are good and to come back in 3-months.
Future: Not sure what it might hold. No treatments are planned or deemed needed
at this time. They term my condition as "stable".
Have had several friends whose cancers (different than mine) were variously termed
as "cured", "in-remission", "FREEEEEEEE", or "they got it all",
only to have something akin to it return later with a VENGANCE and take them.
Want to remain closely monitored to make sure that anything that happens
is quickly spotted and treated.
Owing to the lack of sample-able indicators/markers,
this is easier said than done.
LATEST
On returning home from vacation in early Aug-2009, weight was up to right at 170.
Thought that perhaps it was just good eating on the trip, but eventually decided
that there was again excess fluid in the abdomen.
On 23 Sept CityOfHope drained 2-Liters.
On 8-Oct the Dr. said that since there had been no apparent increase in weight
since the draining, therefore perhaps I had again become stable and should check
back in 3 months -- or earlied if anything untoward develops.
Recomendations to others:
Keep track of your comprehensive blood analysis values every six months,
especially the CBC, PSA, CEA, TSH, and HS-CRP(numeric value) and discuss the
potential implications with your doctor. These tests do NOT make some nasty
conditions (like mine) obvious, but they can lead to further investigation.
ESPECIALLY ask the doctor to explain the meaning of any out-of-range HSCRP value.
In case of anything UN-good, GET A SECOND OPINION from a HIGHLY ACCLAIMED
speciality doctor or clinic.
In my case, I believe that City Of Hope has saved my wife from becoming a widow.
Watch this space for future developments.