Dear Bess,
So sorry to read your post. Everything sounds awful. I guess the biggest
thing that struck me is that you don't have a doctor you feel you trust.
That seems to be the first thing; I don't know--to me.
Have you thought about MD Anderson in Houston? We have someone on the list
who has gotten some Thalidomide treatment out there.
I don't think you waited too long to do anything. Sometimes not everything
shows up right away on scans. From the time I was 24 to 35, I had various
surgeries, large and small and the doctors couldn't figure out if I had
cancer or not. Some doctors thought I did and some thought I didn't...
To go back to the beginning again, I think you have to find a Dr. you trust
and a treatment you trust.
I feel bad about Stonybrook; I grew up on Long Island. There is a train
that could take you there. The hospital, maybe could suggest a nice place
to stay. You would be positioning yourself, not to far from the Hamptons
and the North Fork, which might be lovely places to take a drive, even if
you are feeling well.
Oh, I forgot about the driving. Well, listen Bess; do you want to learn how
to drive? I could teach you. I will bring my old Volvo or borrow my
husband's Toyota and it would take an afternoon.
That's one thing I could do. Stonybrook would be hard for me because it's
about 50 miles east of NYC while I live about 50 miles north of same. Maybe
this is the last thing you are thinking of right now, but anything to help.
I wonder about the unknown primary part and you're trying to find it
whatever it takes. I certainly understand, but wonder if that is the way to
go. Marty's wife was unknown primary and so is Jeanne from Canada, I think.
I would ask them about it.
I wonder if Tom doesn't realize more about everything than you think, if
he's gone with you to all these doctors. But I am with you in that I think
people should know as much as the want to know, and sometimes, can bear to
know.
But again, I think you should sit down and think. I am at X. How am I
going to get from X to.................................................Y,
and what will I need to bring.
Remember about the driving....I'm serious.....you can't be any worse than I
was when I first started.....
Love and Hugs,
Martha
P.S.: Bess, I am in NYC now and then anyway. Let me know if you want to
meet for lunch.
-----Original Message-----
From: BesTom@aol.com <BesTom@aol.com>
To: mol-cancer@lists.meds.com <mol-cancer@lists.meds.com>
Date: Monday, August 02, 1999 5:57 AM
Subject: Re: [MOL] Bess!
>
>In a message dated 8/1/99 2:09:35 AM, you wrote:
>
><<that you are under a tremendous strain; but wanted to know how our Tom,
you
>and your sister are doing. Has Tom started back at S.Kettering and if so
how
>is it going for him? Love you, lillian
>
>-------------------->>
>
>Dear Lillian:
> I AM a total wreck. I feel that we are going around in circles with
>faith in no one thing and have waited too long. We do not like Sloan
>Kettering and didn't go back there there. They refused to let us change
>doctors from the youngest fellow we saw to the head of the dept no matter
>what or who intervened. Their initial diagnosis was "Carcinoma Unknown
>Primary." When we saw that "great guy" at Dana Farber who proposed a gene
>therapy protocol which we decided against, my very first concern in the
>letter I wrote was "We want to find the primary no matter how much more
>testing it takes." He said it was almost certainly lung so we believed
him.
>As you know, we stayed in Boston to have the pleural effusion drained with
>talc poudrage and wasted two more weeks. I then spent a week trying to get
>Auguron Labs in LaJolla to reopen the MMP trial I told you about which
>combined with taxol and carbo seems to prevent metastisis --no luck.
Another
>week wasted. (The trial is still open in Stony Brook which would be a four
>hour ride and I don't drive). I was told by some friends that they close
out
>someone's trials only because they enroll too few, too many, or the person
>dosn't follow the protocol precisely. We then saw two Chinese
>drs/herbalists.
>They were both very nice. The first was personally recommended by Andrew
>Weil He is more "mainstream" and was a full dr in Japan and China. He
comes
>from Shanghai. he sold my husband supposedly sterile powerful capsules and
>powders to take with the chemo. The first is an immune building formula
(all
>strange chinese plant type ingredients I know nothing about). The second
is
>called A Circulation Formula to keep the blood circulating to prevent
>metastasis. The third is a powerful mushroom extract from Tibet. He said
we
>should take that in addition to the Maitake-extract we'd bought at great
>expense. That night Tom had a slight nosebleed.
>The next day we saw the other "famous" Dr. Zhang in a typical Chinese
office
>in Chinatown. He charges very little and his English is hard to
understand.
>He specializes in roots and herbs and the first doctor's wife had gone to
him
>herself. We showed him all the pills the first doctor had given us and he
>said they wouldn't hurt us because they weren't "toxic" but weren't strong
>enough. I drew him a picture of Tom's lung with the pleural effusion and
>many metastasies. He insisted vehemently that Tom's primary was not lung
>cancer. I was so upset and argued with him because of what the guy at Dana
>Farber had said. He replied. " I was chief doctor and herbalist at the
>University of Canton for 40 years specializing in lung cancer. This is not
>the way lung cancer starts. It began somewhere else. He suggested behind
>the nose (not the sinuses)which is very common for orientals (I never heard
>of this) or some other internal organ. I said how come all the cat scans
and
>bone scans hadn't found anything. He said we should have done MRIs because
>CTs don't pick up things early enough. He looked at Tom's tongue and said
he
>had a "weak kidney" He gave us ten bags of srange roots herbs, etc (a
>personalized formula) I have to boil two hours and strain to make a tea.
>This tea has four ingredients: anti-cancer, strengthen the kidney,
>anti-nausea and energy. He also urged us to start chemo immediately and do
>the MRIs later. You can imagine my shock when the lab report from the
latest
>scans arrived the next day and showed a .4 cm spot on Tom's kidney and an
>enlarged prostate (but he did have a PSA test this year and is constantly
>checked for this). The oncologist we settled on at NYU insisted all that
>damage in the lungs couldn't have come from this little spot so we started
>the carbo-taxol chemo. Tom reacted well the first day but we had an awful
>weekend. His RIGHT nose has been bleeding a lot and we are very disturbed
>that the duplication of the two Chinese formulas is too much. Also we were
>told that we should never take aspirin because the chemo already thins the
>blood. Tom's biggest worries are that his cancer will metastasize and that
>the "kanpo" or Chinese medicine will cancel out the chemo so that neither
>will be fully effective. To make matters worse, I was so rattled on Friday
>that I didn't read the bone scan very carefully and only late in the day
when
>our family doctor called to discuss the report did I notice that the "focal
>increase radionuclide uptake in a linear distribution is noted in the
>posterior lateral aspect of the right 5th or 6th rib and pthe posterior
>lateral aspectof the right 6th or 7th rib suggestive of metastatic bone
>disease.. Obviously we waited too long.
> So now I don't know what to do. I guess I have to check with Dr. Weil's
>Chinese guy to make sure the two formulas aren't too much. I'm sure our
>mainstream guy
>knows almost nothing about all this. Also, I just can't bear to tell tom
>about the bone spread. This is what he's terrified of. My inclination is
to
>keep lookingfor the primary because without this knowledge he has a
terrible
>prognosis and how can he enter any experimental protocol? They'll be
>starting angiostatins and endostatins in the fall. My good friend who's an
>AIDS oncologist also suggested thalidimide if the chemo fails. The thing
>that breaks my heart is that Tom thinks if he suffers through the chemo it
>will cure him like an antibiotic.
> So I am always trying to second guess doctors and have no real faith in
>any of them. This is why I haven't written because I can barely drag
myself
>around.
>My sister's condition is grave too. I will help her as much as I can but
she
>does have a family. She doesn't want to know anything so in that sense
she's
>very different from me.
> So that's why I haven't written and am in a state. I desperately
want
>to save Tom and particularly not have him suffer, but even the most famous
>docs can't do that. He is much worse this morning and can't seem to walk.
>Could this be the bone metastasis or the chemo? Misery!
> Sorry to be so self centered. More later. B
>------------------------------------------------------------------------
>This is an automatically-generated notice. If you'd like to be removed
>from the mailing list, please visit the Medicine-On-Line Discussion Forum
>at <http://www.meds.com/con_faq.html>, or send an email message to:
>majordomo@lists.meds.com
>with the subject line blank and the body of the message containing the
line:
>unsubscribe mol-cancer your-email-address
>where the phrase your-email-address is replaced with your actual email
>address.
>------------------------------------------------------------------------
------------------------------------------------------------------------
This is an automatically-generated notice. If you'd like to be removed
from the mailing list, please visit the Medicine-On-Line Discussion Forum
at <http://www.meds.com/con_faq.html>, or send an email message to:
majordomo@lists.meds.com
with the subject line blank and the body of the message containing the line:
unsubscribe mol-cancer your-email-address
where the phrase your-email-address is replaced with your actual email
address.
------------------------------------------------------------------------
