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 specific.
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.
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 earlier if anything untoward develops.
As of March 2010 the HS-CRP value has again become quite elevated,
the ascites/fluid had become uncomfortable, and the CityOfHope
performed my 14th paracentesis/draining of 3.3-liters on 16 April.
Now the "guts" will play for a few days to see who gets to occupy the
newly emptied space.
On 16-Apr they drained 3.3-Liters and my weight dropped about 8 lbs.
As of Aug/Sep'10 there have been some lumps discovered in my abdomen,
some may be muscle strains, some hernias, some tumors, some ??, etc.
I seem to have been SLOWLY gaining fluid in my belly,
but my weight has NOT gone up; actually it has gone down apx 2-to-3 lbs.
Believe some of my body fat is being converted to the fluid.
The consideration is to do more draining and some more (perhaps not as strong/much)
chemo.
Soon then they tested the port that had been used for draining
and for some of the chemo and found it to be defective; not good for either
draining or inputting chemo.
So they are gonna be replacing the port, during which process they will open me
up to some extent somewhere and remove/replace the plastic tube,
in which process they will sorta accomplish a draining during the procedure.
As of 1-Oct'10 am waiting for the schedule for the port replacement surgery;
the consultation is on Mon 18 Oct; then the work may be the next week
or the next one; dunno.
Then will come some more chemo.
Am feeling pretty good at this point, but it's hard to touch my toes.
Still figure to make the mid-Dec and late-May planned vacations.
29Oct'10 Replaced the Intra-Peritoneal Port at 06:00am - yawn
18Nov'10 Drained 100ml of ascites and had another Chemo treatment
10-17Dec Went on vacation; got along ok.
21Dec'10 Drained 1.6-Liters of ascites and had another Chemo treatment.
Still feeling yuccchy on Christmas day but all pretty much as expected.
18Jan'11 Drained 2.0-Liters of ascites and had another Chemo treatment.
Feeling REALLY yuccchy on 21st, but all pretty much as expected.
The upward/recovery climb has a smaller slope - a little better each day.
15Feb'11 Drained 2.0-Liters of ascites and had another Chemo treatment.
15Mar'11 Drained 1.2-Liters of ascites and had another Chemo treatment.
12Apr'11 Drained 1.7-Liters of ascites and had another Chemo treatment.
This is the 6th and last of the currently planned set. It will be followed by CAT
scan(s) and checkups to keep track of the situation.
May 2011 CAT showed nothing growing.
Jun 2011 Status quo: come back im 2 months.
Aug 2011 All's well: come back in 3 months.
Nov 2011 All's well: come back in 3 months for a CAT scan to check on things.
FUTURE: Not sure what it might hold.
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.
Nov 2011 All's well: come back in 3 months for a CAT scan to check on things.
.
.
. hopelessly large gap in this data; gotta do better; nothing spectacular.
.
.
Jan 2013 Had "PowerPort" installed (sorta like Port-A-Cath) to make infusions
go more smoothly.
LATEST Scroll up for full scenario
2013 Went on a clinical trial of a combination of infusions.
Taken off of trial.
2014 Now on 5th formula of chemo.: Genzar and Cisplatinum;
Treatment is 2 out of every 3 weeks.
Continuing to get infusion.
Jan 2014 CAT Scan
Apr 2014 CAT Scan
May 2014 Was able to sneak in a vacation trip.
June 2014 Cardiologist: looking good; come back in 4 months.
June 2014 CAT scan shows something UNgood in abdomen. Will get needle biopsy.
May be either mesothelioma or some other form of stuff.
July 2014 Needle biopsy shows a lump of mesothelioma.
Now on 6th formula of chemo.: Vinorelbine/Navelbine.
Treatment is 3 out of every 4 weeks.
Sept 2014 CAT Scan
Oct 2014 CAT results NOT as preferred;
next step is up in the air.
next step is Hospice, oh shoot.
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, my wife believes that City Of Hope has so-far kept her from
becoming a widow.
Watch this space for future developments.