Good morning,
I'm not sure where we'd be today, or if Joanne would be at all, if
it weren't for radioimmunotherapy - a therapy that was not available
when she was first diagnosed in 1996.
As I'm fond of repeating, each person's lymphoma can behave and
respond to treatment differently. For Joanne the clinical growth
tempo was one of steady progression, but, thankfully, the lymphoma
remained sensitive to each round of chemotherapy. Joanne had five
rounds of chemotherapy between 1997 and 2004, interspersed with
rituxan therapy (2x), ant-cd22 (1x), interferon (1x), and idiotype
vaccines (3x). Rituxan provided only a short period of stable
disease and slightly reduced tumor burden.
CHOP began from necessity in 1997 because of a suspected
transformation. If the lymphoma was not stopped and reversed by CHOP
therapy at that time, Joanne could not have survived very long. She
had a massive pelvic tumor and new lesions were showing up
simultaneously almost everywhere along with all the classic
b-symptoms. The gallium scan lit up like a Christmas tree, including
extensive involvement in her liver and other organs.
The visible tumors resolved very quickly with CHOP x 6. A residual
mass did not light up with a subsequent gallium scan, and resolved
with time ... about the time that new lesions showed up in the
axilla region some eight months latter.
A second round of watchful waiting (along with the usual herbal
concoctions), did not last very long.
... The lymphoma progressed. The axilla nodes already the size of
large oranges when she first tried Rituxan x 8 in 1999
The response to Rituxan x8 as a single agent was not what we'd hoped
for - some softening of the very large axilla nodes; a short period
of stable disease, perhaps lasting 5 months. Joanne's general
oncologist advised us to see a specialist and consider clinical
trials.
In baseball middle relief pitchers are the players that you rely on
to keep you in the game so that you have a chance to win in the
later innings. Oral low dose PEP-C played this role for Joanne. We
called on it 3 times, and each time it regressed the lymphoma
significantly (70, 80, and 90%).
We tried PEP-C with Rituxan, and followed it with interferon, and
with vaccines. The goal being to make the remission last longer ...
and we noticed some progress: Responses to oral PEP-C seemed to be
improved each time and seemed to last a little longer, particularly
when followed by vaccines. But the improvement in response duration
was hardly statistically or clinically significant.
How many times can you go to the same formula? Arms get tired; PEP-C
has toxicities ... The clinical pace of the lymphoma continued:
tumors grew back often before Joanne's hair, taking it's toll on her
body and her sense of well-being.
So we felt it was time to try to achieve a durable remission. The
plan was not feasible in 1996. The only option (having already tried
CHOP) would have been stem cell transplant -- which, was already
recommended by an expert at MDACC. The plan was to build on the
response to oral low dose PEP-C by following it with high dose
cytoxan in order to reduce the tumor burden further and to
simultaneously collect stem cells, and to follow this with
radioimmunotherapy. The goal was to eradicate the tumor masses with
a sequential approach - consolidating chemo therapy with targeted
radioimmunotherapy (RIT).
It should be noted that Joanne had no detected lymphoma in her
marrow at this time (by sensitive PCR testing) following PEP-C,
which supported this plan. Stem cells were collected as a
precaution, which would make it easier to try SCT in the future
should it be needed.
The pesky nodes in her neck (our visible marker of progress) shrank
further in response to high dose cytoxan, but did not disappear. The
single infusion of high dose cytoxan also caused severe nausea for a
day, and longer lasting fatigue, and very, very low WBC counts,
which dropped to near zero before rising very slowly in response to
the Leukine (gm-csf) injections. Leukine is given to encourage stem
cells to migrate into the blood where they can be captured from the
by a machine - a process called aphaeresis. Following days of
leukine injections and blood tests, and harvesting days of low
yield, her counts rose dramatically one day and the stem cell
collection was completed.
The next phase was a rest period, giving Joanne's body and platelets
time to recover.
Dosimetric dose (day 1):
About a month later, the first course of bexxar was given to
determine the clearance rate of the drug so the therapeutic dose can
be calibrated. The pesky neck nodes enlarged to grapefruit size in
reaction to it! Why? We hoped it was inflammation, and worried that
her doctors might recommend that treatment be stopped when they saw
it.
Therapeutic dose (day 2):
A few days later, we traveled back to NYC for the therapeutic dose.
We asked about her painfully enlarged neck lesion. Should we be
concerned? The experts just shrugged ... "I've seen this
before, a few times ...." was the only comment provided. The
therapeutic dose was administered. We returned home to PA, Joanne
lying six feet away in the back of our CRV; hoping not to set off
radiation alarms in the Lincoln tunnel.
Slowly but surely those pesky markers of progress became smaller and
eventually disappeared. Joanne hasn't had a CT confirmation of the
response to treatment but it's clear that there's no evidence of
disease now for almost 3 years. Her counts have returned to normal,
as has her weight and muscle tone. The change in how we both feel,
incalculable.
I'm rewriting our personal story to illustrate radioimmunotherapy
can return lives to normal. Importantly, numerous clinical trials
have demonstrated that radioimmunotherapy can achieve durable
remissions in a sizable number of patients. http://www.lymphomation.org/treatment-rit.htm#about
This is why I take CMS's proposal to cut reimbursements for RIT as a
personal threat to Joanne and to others; and why we have to
vigorously contest it. It took more than 10 years for Bexxar to win
approval, but there's no guarantee it will be available to those who
need it next year. *The risk to RIT is real.* So please take time a
few seconds to endorse our letter, and to ask loved ones and friends
to do the same.
Our Letter to CMS on RIT:
PDF http://www.lymphomation.org/CMS-RIT.pdf
Web http://www.lymphomation.org/CMS-letter-RIT.htm
Endorse http://www.lymphomation.org/CMS-endorse-RIT.htm
All the best,
~ Karl
JoanneS DX 1/96 = nhl-low follicular, Stage III, no bone marrow
involvement - initial W&W, but with progression
11-96 antineoplastons Clinical trial
PR - 30%, followed by progression ...
11-97 ... suspected transformation, not confirmed by core biospy
12-97 6 x CHOP
CR , relapse 8 mo DX = same as original (low grade)
12-99 Rituxan 8x
Stable
06-00 LL-2 (anti-cd22) Clinical trial
Stable
04-01 Rituxan 4x (4/20) seq with oral low dose PEP-C
PR ~ 80%
12-01 Repeat PEP-C
PR ~ 70%
04-02 Favrille idiotype vaccine
Stable
11-02 Rituxan + CpG Clinical Trial
Stable
01-03 oral low dose PEP-C
PR ~ 80%
04-03 Inteferon-alpha-2b
(rationale: to maintain response during rest)
07-03 Favrille idiotype vaccine Clinical trial
Stable
07-04 MRI detects some progression.
Begin oral low dose PEP-C 4 week + 2 week every other day
Result: ~ 90% response *
Bone marrow negative (PCR)
11-04 High dose cytoxan, Neupogen, Stem cell harvesting
(Harvesting while PCR negative,
as precaution, and to reduce tumor burden further)
02-05 Bexxar
(Neck nodes increased by 5x after dosimetric dose,
probably inflammation)
09-07 No palpable nodes detected (2.7 yrs out)
* Response and time to next chemotherapy improving over time.
