response 404 of 475:

May 25 23:20 UTC 2004

For the high risk group (probably me as I had an advanced stage) 2 year
progression free survival was 60%, for the low-risk group over 90%, but the
60% was only for those who had a good PET scan half-way through treatment.
I did not have a PET scan until the end but I had a good CT scan after 6
cycles at least - all the masses noted then are the same size now and were
not abnormal on the PET scan.  

The reason for the radioactive antibody in tough cases is that when tumors
are large the antibody only kills off the outer layer, but if the antibody
is radioactive and binds to the outer layer, it also kills off nearby cells.
Unfortunately these are not just tumor and not even just lymphocyte cells so
they don't like to use that method if anything else can work.  

Do you have ajvar/aivar in England?  

response 406 of 475:

May 26 01:33 UTC 2004

Try also Turkish and Greek and Hungarian stores in addition to Macedonian,
Bosnian, Serbian and Bulgarian.  We made our own from red peppers, baked,
skins peeled, ground up, add fried garlic and olive oil and if you like also
roasted peeled mashed eggplant.  The commercial ones also add salt to ajvar.
The peppers smell wonderful when baking.  In the fall in Macedonia people
would roast them on large flat metal pans over fires.  We used the oven and
a cookie sheet.  You can also put them on the European style electric burners
directly.  The peeled peppers are a favorite late summer salad, with raw garlic
and olive oil.  Early spring salad is garlic shoots.  Anything green was
welcome after a few months of no fresh vegetables except potatoes.  In the
fall everyone pickled peppers, cabbages, and beets, and canned tomatoes.  This
explains the popularity of stuffed pepper and stuffed cabbage, which can be
made from the pickled vegetables.  Pickled cucumbers were less common there.

response 408 of 475:

May 26 04:13 UTC 2004

We buy our red peppers and ajvar in Middle Eastern stores run by people from
Jerusalem, Lebanon, or Iraq, who import things from Greece and Turkey.  The
olive oil from Lebanon is excellent.  Where do you live in England?

response 410 of 475:

May 26 13:29 UTC 2004

That's "Ashington, which is near Newcastle", not *"Ashington-near-Newcastle"

response 412 of 475:

May 27 18:00 UTC 2004

Heh. I just read "Romulan".

response 414 of 475:

May 28 12:32 UTC 2004

Any current evidence of chemobrain?

response 416 of 475:

Aug 17 03:11 UTC 2004

This month I have lots of doctor's appoints.  I had a mammogram (very quick
and only hurt for a few seconds) and a general exam with pap smear to check
for cervical cancer because chemotherapy knocks out the immune system and
there is a virus which causes cervical cancer and might have gotten loose.
I was told to also get checked for B12 just in case the cracks at the corners
of my  mouth during chemotherapy and decreasingly after that were due not to
therapy (most likely) but to B12 deficiency, and a routine cholesterol test,
and a tetanus shot.  

I checked at hospital and physician billing today and I am way over the $400
for which the insurance will pay 80% so I did not want the cholesterol test.
They did the three standard blood draws for cancer checkup from the IV but
would not do 2 of the 3 others (TSH too) without an official crossout of the
cholesterol test so I had to go get a nurse to sign that and then get a second
blood draw.  Ouch.  I wish it were possible to find out what things cost
before they ran up to $795, and how much the PPOM discount is.  They told me
45% but Jim's was nowhere near that (it just came today).  I could easily
have postponed the tetanus shot and mammogram until next year.  There was a
$165 charge for use of the facilities in addition to the general exam (about
$200), a $70 charge to read the mammogram in addition to the mammogram (about
$200).  Tetanus vaccine $30 injection $25 (it took less time than the $3 blood
draw).  Dept. of public health might have been cheaper ($15 for flu shot) but
it is a 3 hour round trip to Ypsi.  

Next Monday I see the doctor.  A friend will email me my CT scan results this
week.  

While waiting around the CT scan area (in the hall to avoid the TV) I talked
to someone in an electric scooter (and helped him by opening the bathroom door
so he could get in and out because the clearance is not enough), the sister
of someone getting checked to see how far her brain cancer has spread so they
will know if it is operable, and someone getting CT scans monthly to make sure
his second course of chemo is not damaging his lungs and that it is working.
He had a relapse so they are doing something stronger.  At one point all his
skin peeled off.  If this works he will do it the rest of his life.  I forget
his schedule, I think it is the first 4 days of each 4 weeks and they give
him good antinausea drugs but his blood cell counts stay low and he bleeds
easily.  He is very happy medicine has improved enough to keep him alive. 
We ended up getting IVs at the same time.  Mine bled all over the floor (well,
all over a bit of the floor) but did not need redoing.  

Again, I feel luckier than most of the other people there.  
We are goofing off the rest of the day.  I learned to cut and paste with a
mouse in Opera for linux and was teaching Jim how to use his WCC webmail and
Opera mail when the WCC smtp server apparently died.  

Taubmann Medical Center has floors numbered (from the bottom):
B2 B1.5 B1 B.5 1 2 3.  We saw most of them going back and forth between
billing offices, internal medicine (3 times) and CT scan (twice).  They hide
all the construction on the half floors.  Or maybe it was B2 B1 .5 1 1.5 2
3?  Jim was leading.  Better than just sitting around worrying.

My symptoms of chemotherapy are nearly all gone.  Still have hot flashes and
it still hurts to sit but things taste normal, my  hair will need cutting soon
for the first time in a year, and people have been telling me how good I look
(nobody told me earlier how bad I looked) as well as admiring my glasses
(designed to fit under a gas mask - I lost the others somewhere).   You can
mail order new lenses (prescription) for $36 plus $5 shipping, much cheaper
than a tetanus shot.  Exams run $48 (Ypsi) to $80 (Main St. Ann Arbor).

We had a small picnic in the 'garden' (sign labelled it that way) next to the
hospital and Jim picked french fries and ate them.  I had to fast 6  hours
for the CT scan.  

For B12 the online site said to fast 12 hours, the doctor said 6, and the
library book said it is usually tested together with folic acid (for
pernicious anemia) and you fast for folic acid, not for B12. 

For cholesterol the book said fast 12 hours, the online site ditto, the doctor
6, and a friend's doctor said the fasting is only for triglycerides not total
cholesterol.  I skipped the test.  The insurance will pay 80% next year.

response 418 of 475:

Sep 7 23:34 UTC 2004

Big surprise, the mammogram was paid 100% by insurance (no deductible) but
I still don't know what happens when the preventive part adds up over $400.
I guess the deductible on preventive is only if you have not yet gone over
your deductible.

Yesterday we reached my fitness goal for the summer.  Biked to Independence
Lake (the closest swimming beach, about 15 miles over dirt roads and some
hills), swam 3 laps (about 500 feet each?), walked all the trails there (saw
lots of frogs and rabbits), left at 7:10, switched to paved roads at N. Maple
because it was dusk and gravel roads with ruts are no fun in the dark, and
got back at 8:40, beating our normal 1 hr 45 min timing.  Took laundry off
the line.  Around 8:50 it started to pour.  
My arms are still pretty weak.  I wish there were a beach closer to town.

Someone gave us a used baby jogger but it is double wide.  Jim tried a
different hand truck and says the trick is to keep the center of gravity below
the wheel axles by using larger wheels.  

I may try doing pushups against the wall, and shallow knee bends.

response 420 of 475:

Nov 16 18:13 UTC 2004

CT scan this morning.  The usual blood all over the place when the IV was put
in but it worked on the first try.  I have been told I have good back
pressure.  While there, we talked to someone who is getting a CT scan of his
knee so they can make a mold to put his knee in when he gets it irradiated
for sarcoma that the surgery missed, for 7.5 weeks five days a week.  Why skip
weekends?  He is going to drive 45 miles each way every day, and the radiation
lasts 30 sec to 1 minute.   He hopes eventually to use the knee again to play
golf, and was showing us pictures in a magazine of how to adjust the screws
in a golf club to  compensate for individual types of swing.
We had a picnic lunch at the cafeteria.  No more noodles so we got the two
frozen vegetables and a peppery potato $2.79 special to have with our
breadmaker bread and milk.  I have to drink lots of water for a day.  
Sunday the MRI, Monday blood draw and doctor's visit.  I don't expect things
to go wrong.  From one website I read relapses in cases like mine are most
common from 8th to 14th month so after next May my chances improve.  This is
the 9th month after the PET scan.

response 422 of 475:

Nov 17 03:08 UTC 2004

The CT scan is supposed to pinpoint where the sarcoma regrew after surgery,
and then I would guess they mark that on the mold so that they can aim the
radiation very precisely to kill just the sarcoma.  I did not get to ask more
questions because I had to go off to get the IV.  A doctor friend of mine
emails me the results within a day or two so I do not have to wait until next
week.  For some reason they don't want patients to read these - perhaps
because many won't understand anything.  

I am betting that my enlarged thymus is back to normal size as I have not felt
pressure in that area since early October.  Last time they told me I could
not possibly feel the enlargement.  I could also tell when the fluid around
my lungs was gone before the CT scan indicated that, because it stopped
hurting.

klg - could you feel your thymus was enlarged?  And didn't they do a CT scan
before they irradiated?

Today I got another reminder in the mail about this morning's appointment,
when I got home (along with reminders of the next three appointments Sunday
and Monday).  Jim gets notices of blood donation dates at the Chamber of
Commerce that arrive the same day.  Is there some place to donate at the
hospital instead?  It is very difficult to pry from the Red Cross information
about local donating events.  Chamber of Commerce is the closest.  Once I
managed to get someone to promise me to email this information from Red Cross
and she sent at Excel file that I needed to convert to something readable.

response 424 of 475:

Nov 17 18:22 UTC 2004

Thanks, klg.  This may be new.  A couple of years ago we could not find this
info online.  Jim likes to donate at Chamber of Commerce but they are not
listed for this month.  This week he can donate at Michigan Union Wed-Friday
2-8 pm, and Friday also at the East Hall atrium.  On the 24th at ISR, 9-3.

My young Macedonian friend whose mother died of stomach cancer reports that
her aunt is now in the hospital awaiting two operations for cancer in situ.
My neighbor on the corner has probably just finished her 8th and final chemo
session for the same lymphoma I had.  It started with hip and leg pain and
they took a very small X-ray and told her she might have sciatica.  A couple
of months later someone thought to scan a larger area.  She is still on
crutches but the area of hip bone that was destroyed by invasive tumor cells
is nearly grown back to normal.  She was acting really cheery - in our cases
the cure was a lot better than the disease.  

response 426 of 475:

Nov 22 03:32 UTC 2004

Today I went for an MRI.  They said to come 30 min early and then we just sat
there for  30 min.  Almost was a bit late because the med school is now locked
on Sundays, but someone let us in the door.  We park there and walk through
the building.

I wore nonmetallic clothing but they made me change anyway, to XXXL gown and
scrub pants.  I nearly tripped over them.  I don't know how a XXXL person
would fit into the hole in the MRI machine.  My short underwear was okay but
they would not allow the long underwear (no good reason) or the t-shirt
(screen printed) or flannel shirt, so I put that over the gown and at the MRI
room they said I could leave it on.  

I got earplugs but could still hear what sounded like varying frequencies of
very fast jack-hammer crossed with loud buzz.  The strapped down my  middle
and feet so my pelvis would not move.  I did NOT have to fast first, or keep
my arms lifted up in the air or behind my head.  The hole in the machine was
too small to allow that anyway.  No IV - it would not have fit into the
machine, which must be a very large circular magnet of some sort.

They injected the rare and highly magnetic element gadolinium near the end
and took another picture before and after.  I hope moving my leg in between
did not spoil the picture (I forget, when they took me out for the injection)
Gadolinium is much safer than the iodine used for CT scans but sometimes burns
if it leaks.  Mine started to leak so they stopped just before the end.
It is used to provide better contrast for various tumors and other problesm
in the breasts, liver and brain, and for slipped disks.  I don't know what
they are using it for here.  MRI is what is used to detect bone necrosis due
to overdoses of prednisone but my symptoms don't act like the usual ones for
that and I only had it 5 days at a time.  My mother got the necrosis by taking
large doses for months at a time and it hurt to stand. It just hurts me to
sit.  I don't expect them to figure this out.  But it is worth trying.

This is not for claustrophobes. 45 min in a narrow cylindrical opening that
did not let me move my arms at all and was probably a few inches from my nose
but I had my eyes shut.  Cool air was blowing over me all the time - don't
know if it was too make it easier to breathe, reduce claustrophobia, or cool
the magnet.

I studied NMR (renamed MRI) in chemistry, where it is used to identify
molecules from how they absorb different wavelengths (?) of magnetism.  Maybe
Rane can explain how it works for imaging.   I will read more later.  Got to
get some sleep before I get jabbed for a third time this week at tomorrow's
blood draw, followed by the doctor telling me how good my CT scan came out.
Nothing has changed including mild thymic enlargement. 

I am no longer cold sensitive like I was for 9 years before I got diagnosed,
when I would get flu-like symptoms if I got slightly chilled, and had to sleep
with a hat to 75 degrees and socks to 80 degrees.  I am down to 55 degrees
now without needing a hat.  Somehow the immune system was overdoing things.
The hot flashes might be helping.  They are back up to about an hour again,
having gone from 50 min to 1.5-2 hours and back down and back up and now down
again.  Cannot find much of a pattern.  

The thymocytes, which mature in the thymus, are what attacks tumor cells, so
I don't mind having extras for a while.  

No blood donation sites are listed this month except a few in Ypsilanti and
the rest are at U of M but we found one for Wed at the ISR, which we hope will
not have battle music.  The ISR tends to have lots of cookies at its
receptions so Jim hopes for chocolate chip.