On 7/19/99 Mark Manley wrote...
Mr. Karjala, I am sure that your testimonial regarding your lung cancer
has brought a flood of email over time. I felt compelled to write
because of the similarities of circumstances. My 36 year-old nonsmoking wife
has just been diagnosed with stage IV lung cancer (by virtue of a 2.5 cm
mass in her lung and a single large mass in a lumbar vertebrae). Other
than moderate low back pain (her presenting symptom), she feels fine.
We do know the gravity of the diagnosis. It has been
particularly difficult to wade through the mountains of testimonials of
success stories with breast cancer, and hear nothing of people such as
yourself. Imagine our comfort in hearing of someone who seems to have
found "the way out."
We are not simple people, my wife is a chemical
engineer with an MBA and I am an anesthesiologist, so we know there are
no sure-fire cures. It was enough just to hear of someone who is doing
well with the same problem. As science-based professionals we are
usually skeptical of alternative medicine, if only because of their lack
of scientific proof. However, now that we are faced with a disease with
such a poor prognosis, we feel all avenues need to be kept open.
If possible, my wife would like to stay in touch with you, and your
mutual progress. Her name is Susan, and we share the email address.
Thanks again for your posting.
Sincerely, Mark Manley
Bob replied...
Hi Mark and Susan,
I'm sorry about Susan's diagnosis. Her presenting symptoms were
identical to mine and I too was initially skeptical about the
effectiveness of alternatives. My stepson, Benn, who was much more
knowledgeable about alternatives, convinced me of their effectiveness.
I'm still doing fine. My last checkup was in Feb. 1999, but I'm going
for another followup next week. If you decide to try the alternatives
that I used, my only suggestion would be to possibly increase the essiac
dose gradually to about 16 ounces per day if it is tolerated.
I base this on the rapid results obtained by my stepson's neighbor who brewed
the tea double strength, and then drank several 12 ounce doses per day,
and also on the results of others posted on two archived essiac
discussion boards {now shut down}.
I had just started going through the message threads of the older and
larger archives and came across
another lung cancer success story almost identical to mine with the use
of essiac, high levels of CoQ-10, etc.
I am convinced that the high (400mg/day) CoQ-10 is also important from the
reading I have done in the last 7 months on the
internet. If nothing else it is very good in preventing or helping with
any heart problems. I have several CoQ-10 info links on my
Links page and my host
has a wealth of information, links, and
success stories. I'm sure you will lose some of your
skepticism if you take the time to study all of this info. Good luck,
and I look forward to hearing from you.
Bob Karjala
On 8/4/99 Susan Manley wrote...
Thanks for helping us to get through to Kathy Sedler.
She seems to be very dedicated and kind. I am now following the same
regimen that you followed -- hopefully with similar results!
I did have
one question though. Did you change your diet significantly as part of
your healing plan? I've heard a lot about various diet based therapies,
but I haven't come across one that appeals to me.
By the way, I've had one round of chemo. I had not started
the alternatives at that point and I was pretty wiped out for 5 or 6
days after it. I'm hoping that next week after round 2 I'm feeling
better faster (now that the alternatives are in my system). Thanks again
for all your help!
Susan Manley
Bob replied...
Hi Susan,
I describe my diet in my reply to Darlene
and VDB. My stepson knew of cancer patients
who had been helped by juicing alone. I didn't overdo it, but I would
juice a batch of carrots and apples about every two weeks and each
batch would last a week, drinking about 6 ounces a day. I
assume you are on the Forward Plus vitamin program, so you should be
getting a good level of anti-oxidants, but the extra from juicing may be
beneficial? I ate a fair amount of salads but also a lot of junk food.
I felt that if the therapies were not successful, at least I
would not be depriving myself of the food I enjoyed. So much has been
written about benefits of soy products that they would probably
make a good addition to any diet, although I didn't use any. I think any
diversified, balanced diet that you feel comfortable with will be ok.
It looks like your treatment will be a good experiment, with the initial
chemo only control period and now the chemo plus alternatives test
period. I will be very interested to hear if you notice any difference
in your tolerance of the chemo.
How much essiac are you using each day?
Bob Karjala
On 8/12/99 Susan Manley wrote...
Thanks for your last note about your diet. I was VERY happy
that you kept it pretty much the same except for adding more salads.
We've been doing the same thing, just trying to add more fruits and
veggies to our normal diet. I do love red meat and sweets, but we were
going to follow your plan exactly, so if you had said to go
"vegetarian", I would have!
You asked how much essiac tea I am taking. I
drink 4 ounces in the morning and 4 ounces in the evening. I have not
gone higher because Kathy Sedler did not recommend more than
that. I'm hoping right now that that is enough to achieve good
results. I will certainly go higher if I need to.
I have good news about
chemo # 2. It went great! I had it Tuesday, and I had no fatigue to
speak of either Wednesday or Thursday (today). In fairness, there were
2 changes between chemo #1 and #2. I was not on the alternatives for #1,
so I'm sure they helped me greatly. But I also received a different
anti-nausea drug.
In chemo #1, I took compazine, and it has a sedative
in it, which may have caused a lot of my fatigue. For chemo # 2, I took
kytril which does not have a sedative in it. So between the drug change
and the vitamins, herbs, and tea, I think I have a winning combination
regarding fatigue!
I cannot thank you enough for your information on
alternatives. The big test is in 2 weeks. I'll have a cat scan of my
lung to check progress of the chemo. I feel very confident that I'm
healing. We have 3 little girls (10, 7, and 5 yrs old), I just have to
beat this for them. I'll let you know the cat scan results as soon as I
have them. If you have any other advice, we would welcome it.
Thanks again!
Susan and Mark
Bob replied...
I'm glad to hear the 2nd chemo seems to be better tolerated. I hope they
all continue the same way. When I was treated at _____________ Cancer Center,
they used the latest protocols and I was
pretreated with granisitron (Kytril), diphenhydramine, dexamethasone, and
cimetidine to minimize immediate side effects of the carboplatin/taxol
chemo.
I am sure these helped on chemo day and I feel the alternative supplements
helped to protect against the delayed effects of the chemo. Once I
was on the alternative program, the chemo was a piece of cake and I had
no fatigue, nausea, or unpleasant side effects. My side effects were hair loss, occasional
hiccups, and lowered white cell counts which could be normalized with Neupogen (colony
stimulating factor) injections.
On 8/11/99 the results of my recent followup with the oncologist were
posted at the end of my web page. Everything was normal! Good luck on
your next cat scan, Susan. I'll be anxiously awaiting the results. I
have a feeling you are going to surprise the oncologists like I did!
On 8/26/99 Susan Manley wrote...
My lung cat scan was this morning, and the results were good!
The 2.5 cm tumor had shrunk about 33% to approximately 1.6 cm.
Apparently there were also some small spots on my lung during the
original cat scan - the largest of which was about 1 cm in diameter.
These small spots seemed to be gone, even the one that was 1 cm.
This was after only 2 chemos, 1 alone and 1 with the alternatives. So
we were very pleased! Now I can't wait to get chemo 3
and 4 and have another cat scan!
Also, my back pain finally stopped
about a week ago, that's been another good sign of my healing. I
haven't seen my oncologist yet -- the information we have on the cat
scan just came from the radiologist as he performed the test and read
the results simultaneously. This is a benefit of Mark working in the
hospital, results in real time!
I'll see the oncologist on Monday
(before chemo 3), so I'm anxious to see what his reaction is. Maybe now
he will believe me when I tell him that I'm achieving remission -- no two
ways about it!
Again, we just can't thank you
enough for your information and support. I'll let you know how chemo 3
and 4 go. And I'll certainly let you know the results of the next cat scan.
Susan and Mark
Bob replied...
Hi Susan and Mark,
I'm thrilled to hear your good news. It sounds similar to my case, with
the nodules disappearing first and the main tumor taking a little longer
to disappear.
There is so much information in our series of emails that I would like
your permission to publish it on my web page. Even more important than the info, is the hope
and inspiration that you can give to other patients who feel in a
helpless situation. I would prefer to leave in your name and email for
authenticity, but if you prefer anonymity I will use initials or a
pseudonym.
Please let me know your feelings. Thanks again for keeping me informed.
You have made my day with your great news!
On 9/1/99 Susan Manley wrote...
Sorry it took me so long to respond to your request about posting my
results on the internet. We've been out of town a few days, and then I
had chemo #3, so I'm finally getting back to you. You are welcome to
post my results and name. I hope I will be sending more good
results in 6 more weeks!
Recalling that the information I sent you was based on conversation with the
radiologist during the test, I do need to make a correction to the
previous note about the cat scan. When I saw the oncologist on Monday for
chemo #3, I was able to see the official written cat scan report. It
said the tumor shrank from 2.2 cm. to 1.8 cm. My very first cat scan,
however, said the tumor was 2.4 cm., so there is some discrepancy on how
big it was to start with.
Regardless, it still shrank, although not quite as
large a percent as we were first led to believe. The other information I gave
you is correct, though. The smaller 1 cm. tumor is gone, and there is no
evidence of new spots. And my vertebrate showed increased bone density,
so it is healing. I knew it was healing, because about 2 weeks ago, my
back pain disappeared - for the first time in 10 months! So we are still
very encouraged and optimistic!
We'll keep you posted as we hear more good news.
Susan and Mark
On 10/15/99 Susan Manley wrote...
On October 4th, I had another chest cat scan and an MRI of my back (these
tests followed chemo 3 and 4).
The chest cat scan showed no new spots and the primary tumor holding
stable at 1.8 cm. We were kind of bummed that it had not shrunk
anymore, especially since it shrank quite a bit (2.2 cm to 1.8 cm) after
the first 2 rounds of chemo. But at least it is holding steady and we
have not given up hope that it will still shrink with future rounds.
The MRI had us very frightened initially. It showed a new suspicious
spot on my lumbar 4 vertebrate (the original met site was on lumbar 2).
We were very concerned that if it had spread to another vertebrate, then
how many other places had it spread to? In light of this concern, my
5th chemo was temporarily cancelled until we could find out about
further spread and determine if we needed to change chemo drugs or look
at experimental trials.
On October 14, I had another bone scan. Amazingly, not only did it not
show any spread to other bone sites, it also did not light up on the
lumbar 4 vertebrate where the MRI detected a new suspicious spot. So we
are assuming, at least for the moment, that the spot on L4 is not
malignant and that it is something benign, maybe a bone cyst. We
were HUGELY relieved to go back from "advancing" disease to "stable"
disease. Although as I said before, we still hope for "shrinking"
disease and ultimately "remission".
It's been a long and emotionally-draining week and a half. I still have
not had chemo 5 yet. My oncologist recommended that we see an
oncologist at Vanderbilt University who is very involved in lung cancer
research, tests and trials. Although we may not need him, we want
to meet him and get our file with him started. Then, should we need him
in the future, he will already know my history. Or, should a promising
new drug trial begin, he will be able to hopefully include me. We are
holding off on chemo 5 until after we meet with him next week (just in
case he suggests a different regimen).
We are still on the alternatives -- vitamins, herbs and essiac tea. I
have felt really good after my chemos and I only have one "down" day
after each round. Besides that day, I keep going almost as if nothing is
wrong. Certainly this is a direct result of the alternatives!
Hopefully, they will also result in more tumor shrinkage. We try to remind ourselves
that your tumor started shrinking significantly after the 5th and 6th
rounds of chemo.
We are hanging in there, despite the emotional roller coaster.
Susan and Mark Manley
Bob replied...
Hi Susan and Mark,
I think the reading of x-rays and CT scans is very subjective. After my
initial 6 weeks on the alternatves, on 7/28/98, the x-ray report said
there was a shrinkage from 2.5 cm to 1.5 cm, but the CT report said the
2cm mass had shrunk approximately 50%. Then on 9/11/98 the x-ray report
said the "faint, less than 1-cm, ill defined opacity in the right lower
lobe was unchanged", yet by 10/20/98 it was totally gone. So you see
there can be subjective differences by different people reading the same
film. Possibly your tumor is getting less dense but hasn't shrunk as
much. That seems to be what happened to mine from 7/98 to 9/98. It took
my tumor from 6/19 to 10/20 to totally shrink and dissappear, so hang in
there and see if there is more noticeable change by the next scan.
This last weekend I saw an October 7, 1999 post on the Mediconsult Lung
Cancer support group by someone whose mom was given 6-9 months last
February, had failed 3 different chemos and had to stop chemo in June to give
her body a rest. At that time she began the alternatives and they
surprised the oncologist in August with a 65% shrinkage (no shrinkage
on the previous chemo).
I am so happy for you that your bone scan showed no spread. I can
understand and empathasize with the anxiety you must have had before the
test, and the relief afterwards.
On 02/09/00 Susan Manley wrote...
After my October MRI and cat scan which showed the tumor in my lung no
longer shrinking and a new spot on another vertebrate, we went to see a lung
cancer specialist at Vanderbilt University. Since I was feeling good at that
point with no symptoms, he recommended that we stop chemo because some of his
recent studies were showing that with lung cancer, chemo does its
greatest good after the first couple of rounds (I had had 4 rounds), and after
that it can cause more damage to healthy cells than damage to cancer. So we
heeded his advice and stopped.
If symptoms arise again (and he said they
almost inevitably will), then we will go back to Vanderbilt and see him. I
don't know what treatment he will recommend at that point.
I have to confess that I was so disgusted with this cancer and the
"failure" of chemo/radiation and alts to make it go away, that I stopped the
essiac tea at that point. I do still take the vitamins however.
We have used this time of feeling good physically (with no chemo making
me feel bad) to reflect and pray more than ever. I even made a pilgrimage
to Medjugorje with some women from my church in November. (Medjugorje is a
small village in Bosnia-Hertzegovenia. Mary has been appearing to 6
children there since 1981. The children are now in their 30's, but the
apparitions continue daily.) It was a very spiritual and miraculous place. Our
visit there has had a significant impact on our families as well as on many,
many families in our parish. Who knows why anything happens in this world,
especially bad things. But I do believe that my cancer has affected so
many people around me in a good way (bringing them closer to God in more
prayer) that maybe that's why I have it.
Anyway, my latest cat scan of my lung was on 2/7/00. After 4 1/2 months
of no chemo, there were no new spots and the original spot was no larger.
Although it did not appear to be smaller either. We are so hopeful that
the spot is just scar tissue, although we realistically know that in all
likelihood there is live cancer in there too.
I have not had any tests on my back since last October.
Since my back
pain went away, I was assuming my back was fine. But after reading your
latest update, I wonder if I should ask for another MRI of my back. And I
wonder if I should ask for another MRI of my brain. What do you think?
Bob replied...
For peace of mind, the MRI would certainly let you know if anything is going on
so it could be treated early, I'm certainly very happy my brain tumors
were caught early. The problem is getting the HMO to approve expensive tests when
there are no symptoms. You might have to pay for them yourself.
I saw my oncologist last
week and learned that he had been fired by my HMO professional group
for spending too much of their money by ordering too many expensive
tests for patients,
and the professional group doctors will
no longer refer oncology patients to him. For the time being I don't have
an oncologist. It is a very sad situation when medical care is determined
by cost and not need.
Update sent by Susan Manley on December 26, 2001...
Dear essiac-info.org,
Thank you for notifying me that Bob Karjala passed away.
I am so sorry, he helped so many people.
So much has happened since the last update on my story. I am however currently feeling
quite well.
In my February, 2000 update, I mentioned that I was beginning to have a recuurence of back pain. MRI showed
spread of the tumor in my lumbar spine. Seeing this as a sign that the essiac tea had not helped, we stopped all
alternative therapies. Various chemos eventually stopped the back pain until October, 2000 when the pain came
back. I then went to the Cleveland Clinic to receive "3d" radiation therapy (IMRT). This was done because I had
already received traditional radiation to my spine. This was successful and I continue to be pain free in my back
now over a year later.
However, during that year I began having problems with headaches and visual disturbances. I was found to have
cancer cells in my cerebrospinal fluid, causing headache and vision problems from inflammation and pressure.
Thankfully, a chemo can be given directly into this fluid which usually controls this problem. Indeed I have had no
headaches for 5 months now, and samples of the fluid remain cancer free.
I am currently on no chemo drugs. Shortly after the headache problem was cleared up, I was accepted to receive
an experimental lung cancer drug called Iressa, a pill taken once a day with minimal side effects. This drug seems to
act, not by killing cells, but by dramatically hindering lung cancer cell growth. I did not qualify for the FDA trial, but
was accepted under the "expanded access" program established by the company that makes the drug
(AstraZeneca). Some sense that this drug might be working came when a CT of my chest showed a slight decrease
in the size of the primary tumor in my lung (for the first time in over 2 years). We pray that I continue doing well
until a cure can be found. It certainly is great to be pain free and energetic again!
Feel free to add my update to Bob's page or wherever you feel it could be useful. Thank you for your prayers,
they do make a difference. Write back if you have any other questions. In early January, I will know more,
as I will be having the whole battery of tests done again. Please pray that these tests come out well and show no
additional cancer growth - and maybe even some cancer decline! Thanks!
Susan Manley
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