Hello all you groovy guys and gals, thought I'd send an update on
Steve.
Steve, age 49
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DIAGNOSIS 1/6/06
bPSA: avg 23 (actual 20.1-26.7)
1/5 cores on right (3+3) - 3%
1/5 cores on left (3+4) 7 - 1%
negative bone scan, CT, endorectal MRI w/spectroscopy
multiple negative DREs
PATHOLOGICAL:
RP 3/6/06.
Pos bladder neck margin, extension to but not into seminal
vesicles,
1 of 2 lymph nodes positive. "Extensive" G9 cancer throughout.
TREATMENT:
Casodex 50 mg/day 4/4/06 (continues to date)
Attempted Taxotere x2, Taxol x1. Severe allergic reactions.
One complete
infusion of Taxotere was completed; other attempts had 1-4 ccs
before being
abandoned. (These had associated steriods & such that are no
longer taken.)
Trelstar q84 4/13/06
IGRT completed 8/5/06. 70.2 Gy to prostate bed, 59.4 Gy to
prostate area lymph
LABS:
2/27 4/3* 4/11** 4/28 5/18
8/14
PSA 21.2 .1 <0.04 <0.04 <0.04
<0.04
Testosterone 574 569 943 226 22.8 <20
PAP (0-3.4) 4.5 .7
.6
(*32 days after RP) (** 2 days before ADT)
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Hot flushes were waking Steve every hour or two all night. Med onc
prescribed Effexor which only worked for a few days, and the SEs were
horrible. They took him off the Effexor but would not try anything
else at this time. (I think this onc is about fired.) His GP
prescribed Lexapro which has helped a lot. It has only been a week, so
we're not sure. But its working longer, so far, than the Effexor did.
He still has hot flushes but fewer and much milder. And situations
like walking in the sun/heat do not bring one on. When he wakes at
night, which is more rare, he can go right back to sleep. Pretty cool
so far. Plus no SEs to the Lexapro.
His fatigue is moderate, cannot work 8 hour days. Comes home and
sleeps a couple of hours, then is up till 9 or 10, then sleeps again.
The improvement in the sleep (from the hot flushes) is helping his
overall fatigue. Hard to say where the fatigue is coming from, with
all the treatments. He has had it consistently since the ADT, but
chemo was started the same day. Those chemo "reactions" were much
worse than the description sounds. He literally felt like he was
dying, could not breathe, they would dose him with massive steriods on
top of what he was already taking for the chemo. Those three events
(at 0, 21 and 28 days) were horrible.
He had scary depression for a while there. It was awful. Now that he
is back to himself, I figured out this was probably caused by sudden
cessation of all the steroids. He was taking prednisone daily for over
a month, also taking decadron plus what they'd shoot him up with during
the reactions. Then they said to stop all of it, and didn't wean him.
The depression lasted a couple of months, and then it seemed to
disappear overnight.
SEs from RT have been okay. Mucousy stool is improving rapidly.
Urethral burning is improving slowly. He was prescribed meds for these
two SEs but never took the meds, it did not get bad enough.
He asked the onc for a DHT test to see if Avodart would be indicated,
but were told no. Actually, it was a PA and she said that DHT tests are
not available, DHT is included in the T test. Again, I think the onc
is about fired. He had several appointments with her that turned out
to be with PAs and were not satisfactory. For instance, not doing
something about the severe hot flushes.
We are incredibly relieved that there is no more major treatment to do
at this time (or ever?). But, we do not have a complete assessment or
plan. For instance, the question of length of ADT treatment, or if he
should go to ADT III. He is hoping the ADT could end 6 months after
RT, I think it could be 12 or 15 months total, the onc said 28 months
when he started it. Seems to me like we need someone who really
studies all that. His response has been just excellent, so that should
count for something. Locally, we have good and supportive doctors (uro
and internal medicine) but they are not PCa experts. We are asking
Strum/Lam if they will do a consultation, hopefully over the phone.
They can have his local doc do any exams or tests firsts. What do you
think? I hope some expert will if not them.
Our insurance plan does not cover any doctors outside of Arizona,
although right now we could change plans to cover some of the great
docs in the field. This would cost about $4000 a year more. We are
thinking that it would make more sense to just pay for a consultation
out of pocket. Because any out of state doc would be a consultant
anyway, and if tx were needed (injections, tests, etc) they would be
done by the local doc. We cannot foresee any imminent need for any
sort of extended treatment that would make the more expensive insurance
a good buy. Does this sound rational, or stupid?
Steve has gained 20 pounds since April. He has been walking 2-3 miles
a day and watching his food. We are going to watch more closely. He's
way interested in sex, has orgasms, no erections (you go, Dave!).
Well, there. Hopefully this whole thing will end this year, ADT next,
and then nothing but periodic PSA tests. Any comments or suggestions
will be welcome.
laurel
Beverley - 22 Aug 2006 20:50 GMT
Sounds like things are much better for you guys! I'm so glad the depression
has lifted. The weight gain is probably from the steroids; they are well
known for packing on 20 pounds or more. Keep him walking, and no cookies or
desserts! I do hope he's better about eating salads than my husband. My
husband thinks salads are for rabbits, it's a good thing he's got a 32 inch
waist.
Most insurance companies will cover you if you happen to be out of state on
vacation. The coverage is usually not as good but still it would help. So
what would happen if you were visiting someplace and got sick enough to see
someone? LOL
I'll email you.
(HUGS)
Bev
> Hello all you groovy guys and gals, thought I'd send an update on
> Steve.
[quoted text clipped - 114 lines]
>
> laurel
juniper - 23 Aug 2006 02:06 GMT
good idea! i checked, though, and they only do ERs.....
> Sounds like things are much better for you guys! I'm so glad the depression
> has lifted. The weight gain is probably from the steroids; they are well
[quoted text clipped - 132 lines]
> >
> > laurel
Naaman - 22 Aug 2006 22:22 GMT
Great news, Laurel and Steve! Sounds as if some things finally are
working right--except for the oncologist. I know it must be a great
relief to you both.
Slightly OT: I'm heading up to Phoenix in a few weeks to see my former
urologist for a second opinion on my situation. Also, going to support
group meeting in Tucson this week, where I hope to get some
recommendations--good or bad--about radiation oncologists there.
Naaman
> Hello all you groovy guys and gals, thought I'd send an update on
> Steve.
[quoted text clipped - 114 lines]
>
> laurel
Steve Kramer - 23 Aug 2006 00:39 GMT
No suggestions, Laurel. All in all, sounds like good news since June.
Thanks for keeping us posted.

Signature
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA .1 .1 .1 .27 .37 .75
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32
Lupron 07/03 (1 mo) 8/03 (4 mo), 12/03, 4/04, 09/04, 01/05, 5/05, 10/05,
2/06, 6/06
PSA .07 .05 .06 .09 .08 .132 .145
Casodex added daily 07/06
Non Illegitimi Carborundum
> Hello all you groovy guys and gals, thought I'd send an update on
> Steve.
[quoted text clipped - 114 lines]
>
> laurel