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DBCL - Here we go

Alph's picture

So, where to start?  Waiting too long?  Ignoring signs......  Yup that was the begining....  Until one day my leg was so swollen and painful that I had to go to the ER.  Never a good place to be unless you need them!  So, long and short get diagnosed with DBCL.  Learning more about the chemo and lab side than I ever wanted to know.

Did the 6 courses of RCHOP, lost my hair, pretty moody,  apetite came and went and came.  Focused on getting organized to die.  Sounds bad but really good.  Some people get a warning about pending death, others go quickly.  I got a warning!  (already forgot about the Prostate cancer 9 years ago).  So, took care of Medical Directive, will, funeral arrangements, make sure family has access to appropriate accounts.  Make sure the information is easily available.  OK, get that stuff done.  Gives you stuff to do during that down time.

So we get the First PET/CT after course 4 and I see something on the PET...  well could not get a difinitive answer from anyone, so we do it again.  Well this shows some odd activity, so almost before completing RCHOP we have a "relaplse".  So now we start RICE and have made it through the first cycle and new PET/CT still shows, everythting shrinking and less activity.  Good things.  Nulasta kicked up the WBC and platelets and go next week for round 2.  Then in a few weeks, prep for BMT.  

I tend to be a difficult patient because I have a background in Radiation Oncology (not an MD), so I know what to ask, how to ask and have extra resources available to me.  When I mentioned to the PA that I took the three PET/CT's and did a side by side......  She said she has NEVER had a patient do that!!  I always ask for a CD of any image set they do and I can view at home and then ask questions.



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