Susan wrote:
>
> This is my first try to send a message, not quite sure what I am
> doing or where it will go. My husband, Bob Carter, was diagnosed
> with metastasized melanoma. He had a large, Clark's Level 4
> melanoma taken off his back about 8 years ago. They took about a
> 9"x13" piece of skin off with it. A doctor overlooked the
> melanoma at a regular doctor's visit when Bob specifically asked
> him if it was anything to worry about, he said no. Bob
> subsequently went to a different doctor for some reason, and when
> the new doctor saw his back, he sent him straight to surgery
> without even biopsying the mole. They felt they had gotten it
> all. Of course, anyone familiar with melanoma knows that it is
> not unusual for a CL4 melanoma to show up metastasized any
> a\number of years later. Bob had been carefully examining his
> freckles, moles, etc. and was worried about a tiny (smaller than
> a freckle) spot on his forehead. Bottom line, it was a CL4 also,
> which made Bob worry about some other tiny spots, of which 2 more
> came back CL4. This was Tuesday before Christmas, had chest
> x-rays, MRI, Catscan and bonescan and results were that he has 5
> or 6 brain tumors; small metastases all over his lungs, a little
> denser here and there; a pretty large tumor in his liver and one
> in his gall bladder. He had 15 radiology treatments, two weeks of
> chemo (separated by two weeks). An Xray taken yesterday because
> Bob was having chest pain (pleurisy sp?) showed the lungs were a
> little worse. They figure the cancer became active about 2 months
> prior Christmas.
> So my question, I look and look, can't find any REAL data on CL4
> metastasized melanoma spread to brain and lungs other than
> "prognosis not good". He will be getting biochemo therapy next
> course of chemo, this one (2 of 4) is using platonal and other
> drugs. I like the doctor (Dr. Loukas, Southwest Region Cancer
> Clinic, Austin, Texas) who is using the protocol of MD Anderson
> for melanoma, he is aggressively attacking the cancer. Of course,
> the treatment and cancer is attacking Bob. The, I assume, typical
> weight loss, not able to eat, weak, etc.
> So, has anyone out there got melanoma along these lines, or know
> of someone who does or has had? I would like hard detailed facts
> of progression of disease, latest prognosis, etc. I am pretty
> mainstream, our faith is strong Christian, alternative therapies
> worry me. I, without intention of offending anyone, do not want
> to become involved in Eastern or Oriental philosophy, but am
> interested in the medical benefits of herbs, etc. as long as it
> is not along yen and yang lines.
> Good luck to all of you. Pretty scary stuff. Worst case scenario
> for Bob per doctors is that if he does not respond to treatment,
> he could go very fast. Maybe in a couple of months. I'm not
> saying that's what they or we presume, we are going for recovery,
> my doctors wanted me to know what could happen so that we could
> get affairs in order. Pretty weird to have two doctors say you
> better get your affairs in order right away as a precaution.
> Would rather keep him with us. I love him a lot.
> Susan
> -----------------------------------------------------------------------
Dear Susan,
You have definitely come to the correct place. First, this site works by
becoming a member and as such, you will automatically get all the
postings that people make to this site (like the one you just made)
delivered to your e-mail through the [MOL] (Medical On Line service).
You can then respond by returning the original message, as I am doing,
with your own message. The purpose of this site is to provide a forum
for people like me and your husband fighting cancer, and for people like
you and my wife who care for those with cancer. It is a safe, loving,
caring site for anything from crying to getting support, from laughing
and sharing resipies to giving each other strength to go on and reminding
each other that each and every day is a gift from God to be treasured.
After all, today is all any of us really has...this site is about making
the most out of it by sharing or strengths and hopes through our faith in
our own personal God.
Some technical information can be had from the National Cancer Institute
(part of the Federal National Institutes of Health that provide the
majority of funding for health research). They can be contacted either
by calling 1-800-4CANCER and talking with a representative about the
specifics of your husbands case. They can advise you about various
clinical trials that are new, were they are being done and by whom and
will send you printed information to your home. Be sure to ask for any
information on diet. They also have a web site at http://rex.nci.nih.gov
Another good source of help is from your local American Cancer Society.
Look them up in the phone book. They will send a large quantity of
information, helping you to deal with all aspects of cancer including
dealing with children if any are in the family (I have three very young
ones), diet, work, financial concerns, etc.
M D Anderson Cancer Center in Houston Texas is noted as one of two of
the best cancer centers in the US. They have a website that would be
worth a visit at http://www.mdanderson.org
There are other sites providing information but I don't wish to overwhelm
you with information. I know from experience that too much is almost as
bad as none. This is a good start. Also, please don't allow yourself to
get into what stage your husband is at. I was stage 4 cancer of nose and
mouth and I'm coming up on my first year anniversary. Others here were
"given" 6 mos and that was four years ago. Others have gone on to God.
What is important is that while here, we all get strength and blessings
through this site and give whatever we can in return.
Welcome Susan Carter and know that I will be praying for you and Bob.
God Bless and Let us all hear from you.
John Lehner
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