And the votes are in: Lymphoma in my pelvic, retroperitoneal (abdominal), and supraclavicular (neck) lymph nodes. And in my bone marrow. Stage 4. Remember, though, that this is indolent – very lazy and sluggish to develop.
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| I usually dislike the words "lazy" and "sluggish," but in this case, I'll take 'em! |
So where do we go from here? Since this type of cancer is very s-l-o-w
growing, the typical standard of care for Stage 4 Asymptomatic Follicular
Non-Hodgkin’s Lymphoma (NHL) is watch-and-wait until symptoms begin to show,
thus deferring chemo and its side effects for as long as possible.
Since I’m not exhibiting any symptoms and am feeling scary well
(except for intermittent bouts of extreme fatigue), I’m kind of “on hold” for
right now.
As you may recall from earlier posts, however, that’s NOT
how I operate. This is NOT my normal “rock-out-with-your-cock-out”
approach (thanks, Jo, for that!). I don’t like uncertainty. I don’t like NOT having a plan. So knowing that I have this cancer thing residing in my lymph nodes and coursing
throughout my bone marrow and doing nothing about it is gonna drive me (even
more) insane.
My logical brain completely gets the theory behind
“watch-and-wait.” If a patient is
feeling well, you don’t want to infuse them with a shit-load of toxins that
will make them very UN-well while the chemo is doing its job of eradicating the
cancer cells. It's that whole quality-of-life thing. Also, there is a risk with
some chemo drugs that your body may build up resistance to them, making them
less effective or altogether ineffective later. You
don’t want to blow your wad early on and not have those big guns available
later when they’re needed more. And
there will always be “later” with follicular Non-Hodgkin’s Lymphoma, because it
will never completely go away - I will experience periods of disease and
treatment, followed by periods of remission, followed again by the
disease/treatment cycle, followed by remission, etc. etc. etc. Some fun to look forward to, eh?
I’ve done a butt-load of research on different approaches
and treatments, and clinical studies involving Rituximab (Rituxan) look very interesting. Rituximab is an FDA-approved monoclonal
antibody, a manmade version of the proteins made by the body’s immune system,
which has been studied as an initial treatment followed by maintenance therapy
for asymptomatic follicular NHL. It’s
already being used as part of a multi-drug chemo regimen in symptomatic
patients.
According to Highlights from the 2010 Annual Meeting of the
American Society of Hematology, studies comparing Rituximab vs. watch-and-wait reported
that “Among those who received Rituximab, between 80 and 90 percent did not
need additional treatment.” Of those
study participants who were on watch-and-wait, only about 50 percent did not
need more treatment. The report further
states, “In addition, the cancer had not continued to grow in about 80 percent
of patients who received Rituximab, compared with about 35 percent of those who
received watchful waiting.”
The choice seems pretty obvious, doesn’t it? Start on Rituximab prior to becoming
symptomatic. But, despite being fairly
well tolerated in most patients, Rituximab still carries its disadvantages, side
effects, and risks - including liver, kidney, and heart failure. Yikes!
My next appointment with Dr. Glenn is in August. I suppose I need to (a) be grateful that, for now, we can go this long between appointments, and (b) look at this three month
period as not “doing nothing,” but rather extra time to continue researching
and coming to a decision about what I want to do.
In the meantime, we had another lovely post-appointment meal
at Cheesecake Factory.
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| This is becoming a habit..... |
Dinner was followed by a little diversionary side trip
through Bloomingdale’s, where I spied a GORGEOUS Coach purse that is strong
competition with the Prada bag I saw in San
Francisco
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| All this fabulousness, AND it's in my cancer color, too! |
As my Lymphoma Goddess Carol Ann said to me, "I may
get hit by a bus tomorrow, so I might as well look cute today.”
Right on! Spoken like
a true Cancer Warrior!
Fuck all this cancer shit. I think I made my decision: I need a new purse!
