"Thomas T. Veldhouse" wrote:
> Age 56. He had his original surgery in December of 2002
> (diagnosed in July 2002 ... 6+ weeks before any treatment,
> then chemo/radiation, 30 days healing and then surgery).
>
> There is currently no plan to do any surgery as he is not
> in any pain (the Doctor found this amazing). The lymph
> nodes have not been removed, but they are VERY near the
> original site of cancer (rectum) in his pelvis. The tumor
> in his liver is apparently in the center and deep, near
> the artery. I have not been told in particular why they
> consider it inoperable, so perhaps there is some other
> liver damage I am not aware of but can only guess at. He
> has bleeding ulcers in his stomach and esophagus (benign)
> that are causing him to become anemic, and that my be one
> of the reasons they have chosen not to operate (so far).
> I suspect also, that the cancer is far along (there is
> now a lump on his upper right abdomen) from the tumor in
> his liver.
>
> I answered some of this above. Other health issues, he has
> typical vices.
>
> I am not sure what Karnofsky performance is, but they
> believed he had better than a 90% chance at complete
> recovery. His goal is quality of life rather than length
> at this point. However, he has resisted amazing issues in
> his life (a survivor of malignant hyperthermia @ 109.5F
> temp ... no kidding). I just want to know what there is to
> know, I don't honestly believe I will find anything that
> will help, but I don't want that to be because I didn't
> look. Even if I can't find something to aid him, I might
> be able to get involved somewhere to help others with
> cancer, and further, such help may reward me someday
> (Grandfather and his siblings, Grandmother and now my
> Father have all had cancer).
Hi Thomas, The alt.support.cancer newsgroup could use a
realist like you or even here. Once your've worked out
what's going to happen with your Dad, perhaps you'll join
the other newsgroup or we can be there for you also if he
decides no treatments at all, or during the surgery, if
applicable and/or during the dying process. What we don't
like to get into (much) is this "alternative" thing because
it can sometimes lead to quackcures, and then the "riff-
raff" of Usenet come in hawking their false hopes and trying
to sell. I use that term "sell" loosely, some actually
believe what they're "hawking" and think they're passing on
good information to others there. Others stand to gain by
"selling".
I've only encountered one other person on newsgroup with MH
and he was a brain cancer patient. He recovered too but I
don't recall his temperature going as high as your Dad's.
Not to say that others aren't out there. Since Malignant
Hyperthermia (MH) is an inherited muscle condition,
hopefully you wear a warning bracelet too. I expect most
anesthiologists now have dantrolene at the ready.
As an aside I was just reading here
http://www.cancerbacup-
.org.uk/Cancertype/Liver/Primarylivercancer Please note
that it's for primary liver cancer, not mets. It also
mentions that the liver is a heat-producing organ. It also
mentions that the liver can continue functioning even if a
little functions and it's capacity to repair itself. (which
also makes me wonder if some of your Dad's liver and/or
tumor is removed, if the rest of the liver still has cancer
in it, only to see it roar back up again in what's left of
his liver?)
Since you mention "typical vices", that leaves us not
knowing how much is cirrhotic.(damaged) It's all degrees, I
guess of drinking and cirrhosis..
It also mentions that if a bile duct gets blocked, jaundice
and vomiting can occur. So that leaves us where? Knowing at
the moment that if your Dad's tumor is deep and projecting
out enough to be seen, it's fairly sizeable. It doesn't tell
us how much of the liver is "cancer involved" nor exactly
how much of the liver is still functioning. If I recall
correctly the liver does not feel pain. It's when a tumor
starts pressing on nearby organs or nerves (I think).
Since it's also in the lymph nodes, we can (I think) with
certainty know that it's elsewhere in the body. (these are
all random thoughts that are coming to me, so bear with me).
We've had others here (albeit much older) who've described
this tumor projecting out and it has come to pass that
they've only had a few months left (no matter what they did
or did not do). Is that the case for your Dad?, I do not
know. Some left saying they might try Gemzar (if I recall).
<
http://www.cancerbacup.org.uk/Treatments/Chemotherapy/Indi-
vidualchemotherapydrugs/Gemcitabine>
That sounds to me (non-surgeon) quite an extensive and long
surgery, partly due to where the lymph nodes are located.
Since the lymph nodes near the original site of the cancer
are involved, it's possible when opening him up ,to discover
that other organs nearby are involved. (the "surprise"
factor). We also don't know how many lymph nodes would be
removed, possibly others in the same area or higher up?
The person I mentioned who went for chemobolization is a
primary (different) type of tumour. Having "been through" it
with that person's wife, post by post, month by month, I
honestly don't think it would serve your Dad well. Why?
because of the severity of the treatment and it wouldn't
stop the mets elsewhere (lymph nodes). Probably ditto for
cryosurgery mentioned on the above website.
There are lists of other treatments here
http://www.cancer.org/docroot/ETO/ETO_1.asp I believe the
immunotherapy takes quite a while to grow and develop the
vaccine (not to mention expense). It's a process and it's my
understanding that they sometimes just don't find the right
vaccine for the specific cancer. Thern there's
Antiangiogenesis Therapy (I think Avastin is one_. My
understanding is it affects the blood supply to a tumor, but
I don't think it does much of anything for lymph nodes where
the cancer is spreading to/by).
Anemia can cause breathing problems. I suppose some blood
loss during surgery could exacerbate this. The other patient
I mentioned did not have surgery but was still bleeding 5
months after the start of his chemoembolization. IIRC he's
only just starting to get his energy back.
You mention vices (smoking?), can perhaps affect healing of
wounds. Other questions: How close or involved are important
blood vessels in the liver? How would his previous surgery
complicate another surgery ? (where they can or cannot cut)
If you want to definitely rule out surgery, perhaps Orac's
idea is a good one. Who knows, maybe the right surgeon can
buy him some good quality time. I would take my father and
copies of any scans and ask the surgeon to review the
situation and perhaps even mark up on his body where he
would cut and ask about any difficulties he might perceive.
Some do this by contacting a hospital/doctor and sending the
records along first. I would hope that surgeons won't just
say "sure okay, whatever you wish"....they would not do this
in Canada, they'd be totally honest.
As a more perhaps personal note, I'm devastated to learn
your father's age. I would have quite a bit of difficulty
accepting there was nothing more to be done. My Dad died
4? years ago in his 70's, it was easier to accept given
the rough life/health he'd had. That being said (this is
me, personal), and knowing some about metatastic cancer
involving the liver, I don't think I'd want my Dad to go
through anything I've posted about above. (except perhaps
a second opinion from a doctor who has treated (or
declined treatment) in such patients, such as Steph. The
only treatment I would recommend to my Dad were if he was
having pain from the tumour - palliative radiation therapy
(if someone like Steph suggested it would do more good
than bad).
I hope this post isn't coming across too negative for you.
I've tried to be fair and consider all that I know about or
can think about. Then flipped that to think about what I
would do/recommend if it was my Mom or Dad. However, I'm
biased having known most of their other health problems and
their views about aggressive treatments and quality of life
issues and issues like how they hated the possibility of
giving up independent living (for possible long term
hospital stays etc) or if complications occur.
Maybe some of what I posted will help you make a list of
pros and cons of each idea/ treatment? Keep posting if it
helps you brainstorm. If I can think of other ideas or
questions to ask, I'll certainly toss them in here for your
consideration or list(s). I'll be here reading regardless if
I can contribute or not.
This is all FWIW (for what it's worth). J
