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I am just finishing up a course of CHOP and Rituxan
(x6) and have similar experiences as Mark with just a few exceptions,
and those are ones that will perhaps give your brother and you some
hope that it won't be as bad as you might have heard. I had entered a
vaccine trial which had a prescribed protocol of CVP, however, I
didn't respond to that, so the docs recommended CHOP/Rituxan due to
tumor mass and bouts of facial swelling.
As far as the treatments- first (and very fortunately), I
haven't had a minute of nausea. I receive Zofran at the start of
IV, and haven't had to bother with any additional anti-nausea
medicine. I know I am the exception, and without minimizing the
problems others have had, I agree with Stanford's philosophy- attitude
and anxiety play a part in nausea. Secondly, I haven't really
been too tired, although it has been cumulative over the course of
treatment to a certain extent from a stamina standpoint, I think. I
generally schedule the treatments in the afternoon (with the exception
of the first Rituxan), then go home and fall asleep early. Next
day off to work as usual- the only time I have needed to take off has
been treatment
time. The hardest thing of all has been to listen only to myself about
how I feel- instead of listening to everyone comment about how I
should be more tired/sick/etc. ( I had some facial swelling that was
in evidence even before diagnosis that has been significantly reduced,
and most people say I look healthier than before chemo, I get a lot of
comments to that fashion.) After all, when you hear something enough
the tendency is to believe it after a while, and I have had to fight
that trend. Again, I know I have been extremely fortunate, so
the message is to encourage your brother to take stock of how he
really feels and try not to let expectations drive the reality.
He may feel really sick and very tired, but I firmly believe that
if he goes in thinking otherwise it won't be as bad as it might have
otherwise.
I have continued to exercise, although not with the same intensity. I
haven't lost any weight, either, and have kept my appetite. For a few
days after treatment, food tastes different- not necessarily bad- just
different. I just found a few things that I liked and ate those until
I got back to normal. I am also stage IV, as you will find many
newly diagnosed patients are. I have responded well, with no
nodes larger than 1cm after four cycles, and I started with many large
nodes, so I think there is a good chance your brother can do likewise.
I also lost my hair, including facial hair, which does have the side
benefit of reducing time in the shower and shaving, to say nothing of
the savings on hair care products! One of those times in life being
male is an advantage. I haven't quite gotten used to looking in the
mirror, however.
Others in this group have a philosophy that I also embrace, and that
is NHL is more akin to having an illness that must be managed over
time, and less like the terminal disease most of us feel (or felt)
cancer is. There are increasing options for treatments, with
great promise, also. This upcoming treatment likely won't cure
the illness, but there is light at the end of the tunnel.
The notion of having cancer will likely dominate your brother's life
for awhile. One of the other positive things he will learn is
that there are many loving people who care about him- so conversations
will tend to be focused on his illness. While I feel blessed
that so many care, I have found that the less I let conversations be
driven by my cancer, and instead focus on the rest of life (theirs
also), the less "sick" I feel. Self-pity is something
your brother deserves to feel, at least initially, but in the long run
it only makes it worse. This sounds more like a sermon than I
had intended, but it is a philosophy that I know has helped me.
Don (AZ)
mixed cell follicular NHL stage 4
Dx 8/01 Tx 1/01-9/02 CVP x5, CHOP+Rituxan x6
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