Let me assure you
that almost all types of lymphoma are
very treatable and DLBCL is a very
common curable type. DLBCL is considered
aggressive and curable, but it is not
the most aggressive form. My DLBC was
intermediate grade. I guess that means
it is slowly aggressive.
It is very unlikely that you will die
before treatment starts. If the onc
suspected you are at high risk, the onc
would have admitted you to start chemo
ASAP. I know one woman who had lymphoma
effecting her heart. She was admitted
and started right away. She is doing
great about 10 years later. She had DLBC
.
I had DLBCL . I had to take chemo -
chop/r for about 4-5 months back in
2004. I've been lymphoma free since. I
consider myself cured. But of course
until you die you can't be sure it will
never came back in your lifetime. But, 5
years out means your odds of getting it
are pretty close to back to normal.
The first cycle of chop-r was my worst.
The prednisone kept me awake at night.
After a few days of almost no sleep, I
was a wreck - not from the chemo - just
from no sleep. For the next cycles I got
Ativan (sleep, anti-anxiety and nausea
drug). It worked like a champ and the
next cycles were smooth. I should have
called the onc nurse to get something as
soon as I couldn't sleep. Live and
learn.
Usually we say that it is more important
to get the right treatment than fast
treatment. Infrequently the lymphoma has
to be stopped as fast as possible
because it is threatening a vital organ
or central nervous system or expanding
rapidly. In that you case you need to
start immediately. If your Dr. feels you
can not wait for the second opinions, I
would ask why and then probably proceed.
I consulted 2 oncs. One was in a rush to
get me to treatment - wanted me to start
within a week at his office. The other
was more interested in maybe doing
another biopsy - mine was just a core
like yours so they couldn't really say
for sure it was diffuse. He said outcome
would not be effected by the wait. In
total between the appearance of the
first neck lump and start of treatment
was about 10 weeks total. However, from
the first lump in my breast it was about
8 months until I started treatment and
about 6 months until the neck lump
appeared. The first biopsy was misread
as benign. My lymphoma was also all
palpable in breast and side of neck.
There was nothing internal near my
organs. My situation may be very
different than yours.
There are many types of lymphoma and
treatment is based on type. So verifying
the type of lymphoma is important. And,
then ensure you get the right treatment.
If you can not wait for the second
opinions, you should proceed. But, still
get verification of the pathology and
the 2nd opinion. If you take one round
of a non-optimal chemo, no big deal. If
you take months of the wrong treatment,
it may be a big deal. There have been a
couple people that have come to the
board and had serious results from the
wrong treatment given at first and then
having to take much more difficult
treatments later because of the
incorrect type of lymphoma being
treated.
One of my oncs was local. An excellent
Dr. who gave treatments in his office.
The other was at a major cancer center.
They were both about 20-25 minutes from
me. I went with the major cancer center
since it was closer to my daughter's
school and if I needed to go into a
hospital it had a good one attached.
But, I know others that use the local
Dr. and it works for them.
This is the scariest time. Let me
reiterate that you will likely do very
well. Once you get the final plan in
place, everything gets easier.
I got a port and I am glad I did. It
makes getting the chemo easier. In my
case I did not have great veins so it
was particularly important for me.
Get your teeth cleaned and checked
before chemo.
Hang in there.
Just keep asking
questions until you feel comfortable.
J (WebMagic post)
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