response 15 of 480:

Sep 29 18:01 UTC 2003

I read the 1-page text version of the WORD file and I apparently have
'mucositis (stomatitis - esophagitis)' which can lead to ulceration and severe
infection.  The mucus only started this second cycle.  So it is not just from
having a cold.  Maybe they should discontinue the Doxorubicin which is what
is causing it.  ANother translator in Spain had mucositis.  I had not reported
the mucus as it just started - I cough it up every hour or two after a
coughing fit.  

This information was on the package insert.  The pharmacist did not need to
look it up in Micromed.  I ought to find out just what esophagitis is now.

response 19 of 480:

Sep 29 20:10 UTC 2003

I wonder if esophagitis can be aggravated by spending too much time lying down
in bed.  One cause of it is gastric reflux which would be treated by reducing
stomach acid using Prilosec but I was taking that when this started.  I will
be spending a lot less time in bed now.  In the hospital the head of my bed
was elevated so I could sleep on my back.  I stopped having to sleep on my
back a few days ago when my ribs stopped hurting (due to pleural effusion -
fluid in the wrong place similar to what was around my lungs).  Elevating the
head of the bed reduces gastric reflux.  The problem developed after I got
out of the elevated hospital bed.

I think I have figured out the many things that went wrong with the billing.

1.  The doctor is supposed to fax U of M the correct diagnosis code for Jim's
lab tests (preventive instead of diagnostic).

2.  We were both billed $7 by the doctor for taking 'hemoccult' (fecal occult
blood) samples but never got any tests done on them.  I had to pay the full
$7 because they billed it as diagnostic instead of preventive - I paid it to
save time instead of money.  Jim's only cost 20% of $3.34 after PPOM discount.

3.  I was billed $38 for a pap smear done at St. Joe's.  Apparently it was
really sent there to be analyzed.

4.  I was given two samples to take to U of M, and told one of them was for
fecal leukocyte smear  (white blood cells in feces) and one was my pap smear.
I submitted them as such.  U of M never billed for pap smear but they did bill
for fecal leukocyte smear.  They did not bill for hemoccult testing.

What I think happened was someone gave me Jim's fecal smear and told me it
was a pap smear.  The doctor forgot to order hemoccult tests for both of us
after taking the smears.  And forgot to give me my pap smear and sent it to
St. Joe's instead.

So I have paid $7 plus 20% of $3.34 (65 cents) for smears that were not tested
for fecal occult blood (one was tested for something else) and my pap smear
was sent to the wrong place, which means St. Joe's is billing me for it and
the insurance won't pay anything, so I suggested that the doctor pay my $38
- 80% of the St. Joe's bill plus $7.65 adds up to $38.65.

How many mistakes did the doctor's office make?

If they don't pay for their mistakes I will notify PPOM that this doctor is
not following the rules.

response 21 of 480:

Sep 29 22:25 UTC 2003

I was asking if you have ALS.  I have no idea what 
your response means.  But there is no need at all
to answer the question if, for whatever reason, 
you'd rather not.

response 23 of 480:

Sep 30 03:51 UTC 2003

Mail that I am sending to umich.edu (two doctors) is coming back to me with
'remote protocol error'.  What is going on?

I found another website with a very long list of side effects of doxorubicin.
Apart from the lowered blood counts, I don't have ANY of the more common ones
(over 5% incidence) such as nausea.  I DO have a couple with under 1%
incidence, lucky me - the laryngitis, voice alteration is listed as such.

I don't know if it is related to esophagitis, hopefully I don't have that.
I feel like my gullet is somewhat swollen.  I wrote the drug company again
to see if they can find out whether this will go away some day.

Other effects are somnolence, insomnia, weight gain, anorexia, constipation,
diarrhea, erthyrodysesthesia and other words I did not look up.  Maybe 100
side effects.

Tachycardia and bradycardia (heart rate faster or slower) and various sorts
of heart damage.  I asked about that too - what are other people's normal lying
down and sitting pulse rates?  Does your pulse go up 20 when you sit up?

response 25 of 480:

Sep 30 03:58 UTC 2003

(I meant the rejection notice, not the original message.)

response 27 of 480:

Sep 30 14:23 UTC 2003

I had all the mail I sent rejected after that including some to other places.
I will try again tomorrow.

A friend sent me a copy of an Ann Arbor News article about Bexxar, the
radioactive form of Rituxan (sp?) which apparently was approved for general
use this June.  I hope I don't need it but I sure timed things right.  The
article says Dr. Kaminski plays classical piano.

Since I can't send mail through to Bedford Labs I may phone again and ask them
to find out how long the laryngitis is likely to last after therapy ends.

The third batch of pears is doing well.  The tree is out of pears.  Jim says
that our ajvar does not taste like the commercial stuff.  I read him the label
- salt, sugar, vinegar.  We did not add these.

I think the radioactive Bexxar may have been used primarily on patients whose
bone marrow was cancerous.  They have no immune system left (perhaps due to
treatment?) so the regular antibody method would not be of much use since it
simply labels cells for attack by the immune system.  The radioactive form
kills these labelled cells directly.  But only 95% of B-cell lymphoma cells
have the protein needed by the antibody for recognition so neither method
would work on the unlucky 5% of people whose cells don't have that protein.
People are working on another antibody that recognizes another protein.

response 35 of 480:

Oct 1 20:34 UTC 2003

Jim's neighbor two houses over, who walks to work at the ISR, left a lemonade
cup full of cut flowers from her garden and a card with an offer to pick up
anything we wanted at the food coop or farmer's market.

The drug company that makes Adriamycin (doxorubicin) says they cannot do
anything except send me info from the package insert, and forward symptom
reports to the FDA.  I hope my voice comes back next year.

response 37 of 480:

Oct 1 20:46 UTC 2003

Poor keesan.