Re: Experimental Treatment for Liver Cancer (inoperable)?
From: J (unnewbie27_at_privacy.net)
Date: 06/18/04
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Date: Fri, 18 Jun 2004 18:39:42 -0400
"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/Individualchemotherapydrugs/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
- Next message: cyli_at_visi.comi.nvalid: "Re: Information on Medicare-Approved Drug Discount Cards"
- Previous message: CMS Outreach: "Information on Medicare-Approved Drug Discount Cards"
- In reply to: Thomas T. Veldhouse: "Re: Experimental Treatment for Liver Cancer (inoperable)?"
- Next in thread: Orac: "Re: Experimental Treatment for Liver Cancer (inoperable)?"
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