1 (edited by Iowagirl Thu, 24 Jul 2014 18:12:48)

Topic: Round 5 chemo update

Just looked at the discussion board and realized that after I posted this, I didn't get it on the right forum  Didn't mean to post it on Thought for the Day.  Don't know how to move it to one of the other more appropriate boards.  Sorry

Yesterday Wednesday, I went in for the start of round 5 of Gemzar and Cisplatin.  My blood counts are mixed results.  The red blood count is now down under normal as is everything else associated with red blood cells, but not bad enough to call off chemo.  My platelets continue to bounce around the low -normal range....last week, there were 130+ and yesterday they were 170. 

Again, we had difficulty with the port access, but after moving it around (without withdrawing it) several times, they finally found a sweet spot that allowed blood return and flushing, so chemo surged ahead.  The port continued to act up though, sending off warning beepers about every 2-5 minutes.  The nurse adjusted it one more time,.."turning it" as she referred to it...and that finally fixed it so that they could put in two drugs at once.

This time, the combo chemo didn't wipe me out quite as much as usually it does, however, I did go to sleep several times during the infusion. 

A dear friend had supper for us at 5:30 p.m...about a half hour after we got home.  (All home made comfort food and fresh from the garden beans, carrots and potatoes...YUM).  Great cookl  After that, I slept until the phone rang at 9 p.m. ...and I was feeling crappy after that...but couldn't put my finger on what it was.  It never dawned on me that the queasiness would start that soon....same day.  But, two hours later, I was dry heaving before bedtime.  One again, it was only dry heaving for a minute or two and then I was fine.  I took a Lorazapam just in case before going to bed. 

Today....another story.  I was queasy from the moment I woke up.....but no dry heaves.  So, this stuff IS starting early this round.  I've been queasy all day...off and on...even with the Lorazapam in my system.  I called my onc and she said I could take double the Lorazapam...as long as I didn't use it and then go out driving.  I need to see what it will do in regard to making me sleepy/groggy.  At least I have an option.  She had also given me another drug for nausea, to take half way through the Lorazapam in case  of breakthrough nausea.  However, food always seems to make this queasiness better.....so I've been trying to eat smaller amounts more frequently.....snacking so to speak.  I know the worst of this will only last through probably Sunday, ....or maybe extend a little.  But, then after that, it will continue a little until after the Gemzar chemo next Wednesday and then stop  until the next (and final) round in August starts. 

My local oncologist again reminded me that Mayo had said 4-6 rounds as tolerated and that I didn't HAVE to do rounds 5 and 6 if I wanted to stop.  I had felt that so far, the side effects I was having were minimal compared to most I'd heard having....and that to me they have been tolerable.  My onc also knows that the port is another thing that I would consider in whether to stop treatments, but if I can push on through the side effects okay, I will deal with the port problems (even if there 's another attempt that rivals the 5-poke day).  This 5th round may make me change my mind...or at the least...question my decision....but I do know that  the Gemzar alone has never caused me anything but feeling very tired for about a week and a half , so whatever the worsening of side effects from the Cisplatin this week, I am sure that in a week at most the worst will be over  for this round and it will be just regaining strength after the next week's infusion of Gemzar. 

After next Wednesday's Gemzar, I will be going to Mayo on Thursday  for a CT and blood labs (and to get my blood drawn for the Cholangiocarcinoma  Registry and drop off my paperwork for that).  After the tests, I will meet with Dr. Domingo, my onc there on the same afternoon, to get the results of the CT and blood labs.  So I will find out immediately if there is anything starting to grow that shouldn't be.  It will be  5 months post op and 3 months past my previous CT scan at post surgical check up.  I'm experience the anxiety again about all of that, but must of the anxiety dropped off today....apparently accessing the port and getting the chemo I know will make me feel crappy again was making me the most anxious  for now. 

Hopefully, no other reports until after my Mayo trip.  If some new or worse side effects from the chemo come up....I'll be on here again asking for help or suggestions.  Meanwhile, I am still in the "mode" that I "can do this.". 

Iowa Girl...Julie T.

"Just for today, I can get through anything."  I'm a cancer survivor, not a doctor.  The opinions I state are my own, based on my personal experiences.    As always, talk to your doctor about your concerns and treatment.