response 392 of 475:

May 19 04:05 UTC 2004

Today I had my first of many CT scans to make sure that the lymphoma has not
returned.  They remembered I did not want my barium sulfate smoothie
refrigerated and I was allowed to use my own cup (but the bottle has a large
mouth so you can drink directly from it too).  I thought I was not supposed
to have any more IVs but they had me sceduled for one.  I was told long
sleeves were no longer allowed, they were somehow causing problems with the
machines when people moved threw them (getting caught?).  Jim let me wrap up
in his heavy flannel shirt while waiting, after the IV.  I got a team of two
doing the IV and they also did my blood draw to save me a second jab and an
hour of waiting around, and took the samples where they would be analyzed,
and were all very cheery and considerate and said hardly anyone else ever
thanked them for doing such a good job.  The IV hurt no more than the average
blood draw, they put it just where I asked (after phoning the technician to
make sure the left arm was okay), and hardly any blood got out that was not
supposed to.  I got the new machine that takes half as long, and did not feel
like I was going to go blue in the face holding my breath.

Someone is doing a study of former and present smokers there by offering them
free X-ray and CT scan checkups, to see which works best.  They have detected
a few early cancers that way but no conclusions yet.

I got in and out on time and we took our Zingerman's bread to the hospital
cafeteria and had a picnic of bread and water.  At 3:30 there was no food
there to buy except hamburgers and pizza type stuff.  At others times you can
buy 'three sides' of vegetables as a cheap meal.  We tried to identify the
various flags hanging from the ceiling.  

I biked there and back, first time I did not need to be transported.  I waited
2 hours on a stretcher for my first CT scan.  This time I sat and talked with
other people about their problems.  I have graduated to a small pillow which
friend made for me to sit on, and Tim gave me a larger foam one today that
is higher at both sides (lower in the middle).   We had a nice scrabble game
with him (Jim won, with a little help) as I was too worn out from the usual
worrying to go back to work tonight.  (I don't get much sleep before hospital
visits.)  Results within 3 days.  I am supposed to drink a lot to get the dye
out of me.  We got juice.  

I have a big translation probably related to a drug company which will (if
I finish this batch and accept two more batches) pay for my medical deductible
this year.  Nice to get back some money from a drug company.  My 8
chemotherapies were $5000-6000 each for just one new drug.  

response 394 of 475:

May 20 05:25 UTC 2004

I just did some reading on how the thymus gland is atrophied (gets smaller)
due to chemotherapy and then often grows too big afterwards.  It did not say
how long things took to get back to normal size.

Then I read about NonHodgkinss Lymphoma and PET scans.  56 out of 67 patients
with CR (complete remission) according to the PET scan were still in remission
653 days afterwards, and 11 had recurrences an average of 404 days later. 
Of those whose PET scans showed FDG (radioactively labelled glucose) uptake
all 26 had relapses, on the average in 73 days.

So I am in the group where about 83% were okay for close to 2 years
afterwards.  (It did not say what happened after that).  

Then I read that 30-60% of NHL patients especially with large masses have
residual masses that are fibrosis, not tumor, and only 18% of that group
relapses (I did not see a time scale on this).  

So I have a 5/6 chance of being okay for the two years, and an even higher
chance of being okay for the next year.  I read earlier that my chances of
5-year survival without symptoms are about 65%, and there is a second-line
chemotherapy with 50% odds after that.  

I will try to stop worrying between now and Monday so I can get enough sleep
to do a big translation for a drug company that might pay for half my
insurance deductible if I work fast until June 1.  Or 30% anyway.

response 396 of 475:

May 20 19:00 UTC 2004

How did you know my birthday is coming up?  Happy birthday to you too, Tod.

I am still waiting for the bill for Jim's insurance so I can pay both of ours
at once.  I just noticed that one reason they give for the annual 15% increase
is the increasing cost of drugs.  One of these costs appears to be very high
lawyer bills for arguing about who has the right to make what.  Eight
translators have been working on this job I am doing since maybe January, full
time.  99% of what we are translating is probably irrelevant but lawyers have
no interest in minimizing costs and time of other people as they get a
commission on it.  All the jobs for lawyers are to translate 'everything'.
One job for a lawyer insisted on translating the Polish translation of an
English original authorizing a school to send transcripts, also the
instructions about how to fill out the application form for admission (they
sent ALL the school documents).  Another one sent me menus and candy wrappers
- they must have cleaned out someone's desk.  It was not enough to tell them
'this is a candy wrapper', they wanted every word.  I don't like lawyer work.

Got to get back to cranking out 3000 words a day now about nutrient broths
and mineral salts, a welcome change from profit analyses.

response 398 of 475:

May 22 02:30 UTC 2004

Drugs manufactured in Canada?

response 400 of 475:

May 24 19:04 UTC 2004

Today I saw the doctor.  A nursing student did the weighing.  My pulse is 77
(normal being 70-100 or so;  Jim thinks he is 60) and blood pressure the usual
105/60 but I think she pumped it up to 160 to start anyway.  This time they
did not measure blood oxygen.  A medical fellow did my exam and answered some
questions.  The loss of taste is also related to nerves and they can take 6
months or longer to grow back.  Chemical menopause has a 50% chance of being
permanent at my age.  I won't notice any symptoms if I get a relapse, before
the CT scan catches it.  I don't need 10 years of scans, just 5.  After 5
years the chance of a relapse is very low.  After 2 years I have an 80% chance
of being cured (no relapse).  After one good PET scan considering other
factors (I was in a really advanced stage) my chances are 60%.  The doctor
did not want to tell me this and immediately pointed out that this is better
than half.  I told him I already read these odds and knew there was a backup
treatment that was not so much fun.  He told me he could usually tell from
a gut feeling whether someone was going to do okay and I was going to do okay.
I thanked him for being so optimistic all along and not letting me know what
bad shape I was in to start with.  

We ran into the mother of the boy who was in there frequently my first few
times and he has also gained back 20 pounds, but still has to come every week
for blood work.  He also has hair now.  

My next appointments are mid-late August.  While waiting for them we
recognized a woman we had talked to last time.  We will see her again in
November as they are now coming only every 6 months.  

We said hello to the cancer center nurse and her mother is getting a new
treatment and was able to go home.  I told the pharmacist that my voice is
back.  He was the one who discovered it was probably a drug reaction.

We ate our picnic of rye crackers and ajvar at the cafeteria, with some cans
of juice Jim took from the cancer center and a plate of brown noodles with
vegetables and white sauce.  He said the red sauce did not taste like anything
and at least you don't expect white sauce to taste.  

I have to get an IV again next time(s) because of the persistent small masses
in the spleen but I have a slip to get the blood draw at the same time again.
If all goes well I would like to go on vacation for a couple of weeks after
the next followup exam (late August to early September) if I am strong enough
in the legs by then.  (And able to sleep on a harder surface).

response 402 of 475:

May 25 16:19 UTC 2004

eye-var.  j pronounced like English y.  Turkish word also used in in former
Yugoslavia.  This jar had red peppers and eggplant, some have no eggplant.
Usually also garlic and lots of olive oil.  Most versions are with hot peppers
but we found two without at Aladdin's Market on Packard.  Also good added to
beans and rice.  

Today I tried to find out by a few phone calls if a mammogram is needed when
one is getting frequent CT scans.  Someone said that if a CT scan finds
something suspicious they also order a mammogram.  I should ask my doctor.

I found another online report of 24 people with my type of lymphoma who had
good PET scans (and 11 who did not, 10 of whom had relapse).  Of these, 3 had
relapses at 8-11 months and one at 20 months, the rest were okay. 5/6 again.
I will try to not worry until the third CT scan at 9 months.  PET scans cannot
catch really small tumors, and it probably takes 8 months for them to grow
large enough to be noticeable by CT scan.  A third study reported 85% of
people with good PET scans were okay for 2 years.  After 2 years a relapse
is quite unlikely and after 5 years extremely unlikely.  

20/35 is about 60% of the total group who were okay for 2 years.  Of the group
with good PET scans it is again about 85%.  In any event, over 50%.  Maybe
I will celebrate after the fourth scan, next May (or for my 55th birthday,
which makes me eligible for chair exercises and a senior discount card at Old
Country Buffet or whatever they call it now).  

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?