My Primary Peritoneal Cancer Diagnosis Journey Postings XII -

Phase XII

Wow, my twelfth posting, where does the time go <smiling>…  25 countries have viewed my blog now with over 1300 page views since October 19^th when I started to post my journey…  It really amazes me and at times over whelms me in a good way…  I was talking with my beautician who encouraged me to blog about my journey and the drug shortages.  She said you should try and post a map showing all the countries that view your blog.  So I did it!!!  At the bottom of my blog you can see a map of the different countries that have viewed my writings.  I was thrilled when 100 people viewed by blog, now over 1300 and 25 countries…  amazing, so very cool…  and so up lifting to me to think I maybe helping get the word out, maybe helping someone else in a challenging situation... 

Had my next Doctor visit on January 10^th.  My CA-125 is now 1650!!!  That is over a 400-point drop…  Happy New Year to ME!!!  Best drop in a year, finally moving in the right direction solidly…  My white count dropped and is down to 2800…  Weird, as usually with Carboplatin it is your red cells that take a beating and my red count was good.  My baby cells were about 1000, with that count low and my white count down to 2800 my doctor is concerned.  He consulted with one of my Chemotherapy nurses and they decided with us that I could have this round of chemotherapy as long as I agreed to a Neulasta shot.  I said I had a couple of those shots when I was on Alimta earlier in 2011.  He asked how I did on the shot, I shrugged my shoulders and said I did fine, not bad at all.  The side effects kicked in at the same time it is my sleeping day(s) from my chemo treatment, and a little ibuprofen definitely helped.  He just looked at me and I smiled.  He sort of shook his head saying you make things look easy when I know they are not.   Really I am a bit achy from them; it is not any worse than the achiness from the flu.  A couple of ibuprofen, crawl under the blanks and sleep, in a day or so all better…  <Laughing out load>  Okay maybe not that easy, though it seems walking, moving and puttering around really helps me through the achiness, by Sunday I’m feeling much more like myself.  Plus (Big Plus) with the shot my chemotherapy will not be delayed…  That is big in my book especially with a 400-point drop in my numbers.  I want to keep up the momentum.  Wouldn’t you?  I’m thinking, Oh YEA!!!

I asked what my treatment was going to be this go around?  With the Doxil now depleted I was sure I would be getting something else, no doubt in my mind.  My doctor looked strange at me and asked why.  I said I have been getting Cisplatin, Doxil, and Avastin (I misspoke, I actually was on Carboplatin, Doxil and Avastin).  He sat back down contemplating Cisplatin…  He said I actual like that combo for you; I obviously was making a face because he asked what was wrong.  I said I just don’t like the name Cisplatin <laughing>.   He said why, so I emphased Cis-platin.  The chemo infusion nurse that was with us smiled, she understood why.  He just looked at me a bit concerned and I said I will get over it, it is just me <Smiling>…  So today’s treatment will be Cisplatin, Doxil, and Avastin…  We shall see what this combo does.  I’m thinking knock the you know what out of my CA-125.  The phrase “Be careful what you ask for” is coming to my mind, even subconsciously…

My appointment was a little later today so Lynn and I were able to stop and grab coffee and something to eat for later during my treatment.  That is nice having coffee right away.  We picked out our seats for today’s adventure and settled in.  The ladies that were already there were laughing, as we generally seem to take the same seats quite often.  Today though we seem to try different seats than usual.  The nurses commented, now how are we going to remember where everyone is...  It is going to be longer infusion today because of the Cisplatin.  They have to give you more IV fluids as Cisplatin can attack your kidneys.  It worked out well today as I have my blue insulated cup filled with ice water to drink during chemo.  I shall be trying to double my fluid intake over the next few days to keep my kidneys flushed out and not allow that chemo to linger there…  Yes, that means I will be close to a bathroom… 

The infusion went without a hitch today, which is wonderful…  Went home and napped for a bit…  When I woke about 4:30ish it was getting dusk and our home was dark and very quiet, not a creature was stirring.  I sat up and looked out the front window as I wondered if I was by myself…  I wasn’t, Lynn was upstairs in her office and Megs was in her bedroom studying…  Lynn came down stairs and said you are awake.  I said yes, and wondered if I was alone, till I noticed the cars…  That was a weird feeling waking up at dusk from a sound sleep, you wonder what day it is and what you missed <laughing>…

I worked the next two days after chemotherapy and took Friday off as generally the 3^rd day is my sleep on and off day…  With treatment on Tuesday, my lay around and putter day falls on Friday then Saturday I am moving around more…  When my treatments are on Wednesday my sleep and slow moving days fall on the weekend so I miss less work.  Having them on Tuesday is fine; the Doctors office does not seem to be so crazy…  So it all works out just fine…

The rest of the month is uneventful, busy with life…  That is a wonderful thing and I really enjoy all the challenges that come with it.  Work is crazy; it is that time of year, “end of year”…  I keep saying this too shall pass…  Been saying that for a number of years that and this is an unusual week, and then it got pushed to month. Now I think I am up to decade…  lol

Well on January 24^th 2012 Roswell Park Cancer Institute (right in my back yard) announce a clinical trial for a vaccine they developed and received FDA approval to move to Phase I of trial for a whole host of cancers.  They say “The new NY-ESO-1 dendritic cell vaccine is expected to show great promise in patients with bladder, brain, breast, esophageal, gastrointestinal, hepatocellular, kidney, lung, melanoma, ovarian, prostate, sarcoma and uterine tumors”…  They are looking for up to 20 patients to participate in Phase I.  How exciting is that.  In the news conference the also mentioned Primary Peritoneal Cancer and patients that have lingering disease…  I’m thinking hey that is me…

http://www.roswellpark.org/media/news/roswell-park-launches-landmark-immunotherapy-vaccine-trial

  So yes I called the phone number and threw my name into the mix.  My next doctor’s appointment on February 7^th Lynn and I will talk with my GYN Oncologist and get what he thinks about this study…  This is so exciting and it is right in my back yard. 

On January 30^th I received a call back from Roswell, they left a message for me to call back and ask for a person, so I did on February 1^st.  They took down my clinical information and talked about where I am in my treatment.  Said I will get a call back in about 4 weeks.  That works great, I’m thinking as we can talk with my Doctor and see what he knows of this trial and thinks…  and what he thinks about it with my situation.  My mom is so excited that I called and have received a call back.  She energizes me about it…  I don’t know if I have the protein yet that they are looking for, my Oncologist may…  Wouldn’t it be awesome if I do qualify, I get into the study and my insurance helps pay for it…  I know a girl can dream and wish can’t she… ?  Oh yea, I can…  ;-)