My Primary Peritoneal Cancer Diagnosis Journey Postings XIII -

Phase XIII

Well someone from Roswell Park called me back on February 1^st about the vaccine study.  I was very surprised; I thought they wouldn’t call before 4 weeks.  The person I talked to wrote down all my clinical information and the different treatment protocols we have tried so far.  It was funny, as I had to spell the chemo drugs I have been on to be sure she took down the right ones.  We talked about where I am in my treatment and she said she was passing my information on to the research team.  That I will hear from them in about 4 to 6 weeks.  They will have more questions for me and may request that I come in for blood work and tests.  Cool I am thinking…  This is very exciting to get through another screening process it seems.  Plus 4 to 6 weeks gives me plenty of time to talk with my Gyn oncologist about the study, get his take on it, and of course his recommended approach to it.  I see my doctor on February 7^th.  I have the study printed out to give to him if he doesn’t have it.  I would be very surprised if he doesn’t already have it as being a GYN oncologist and affiliated with Roswell.  Plus I am sure his office has received a number of calls about the study, as it is right in our back yard… 

My doctor’s appointment went well.  I was hoping for another 400-point drop.  Alas my number basically stayed the same.  It is now at 1700…  I’m thinking bummer… (Laughing)  I did get the talk again that the change in my number is not significant and therefore remained the same/stable, which is good.  I know stable is good, I can be a bit disappointed that it didn’t drop…  He agreed…  On a positive note, my blood counts are the best that they have been all year…    My last chest x-ray showed improvement too, my overall exam is good.  He asked if I was working out because I look like I am getting fit.  I said not working out, but puttering around the house, re-organizing things.  So I am generally always moving around which really helps me get feeling better.  I said we want to and been talking about walking a few times a week, but we have not started that yet…    He asked if we had a dog, we could walk ‘em and get exercise that way…  I said no, two cats who think they are dogs…  He said you can’t walk cats, I said you are right, they lay down when you put a collar and leash on them and they won’t get up, laughing…   I said I am really glad Megs isn’t here today because that would be another additions to the argument why we "need" a dog…  He laughed and said yes I guess we can’t say no to our children…  I said, nah it’s more like daddy’s can’t say no to their daughters…  We have been saying no to a dog for a few years know…  lol.

He asked how I tolerated the last round of chemotherapy; I looked at Lynn and said fine.  He asked about my neuropathy, I said generally the same.  I have some days I hardly notice it and others I am more careful because I notice it more.  He shook his head and asked for a Chemotherapy nurse.  They have ordered another MUGA Scan to check my heart because I have been on Doxil for 6 treatments to compare to the first one I had when I started Doxil.  My last MUGA scan came out at like 67%.  Wouldn’t it be a hoot if my next one was even higher! (go Cathy, go Cathy… doing a dance)  lol 

My treatment this go around will be the same; Cisplatin, Doxil, and Avastin…  long day again…  such is life…  :-)  I have my iPod, Kindle and food, Lynn and I are all set…

Before we were done we asked him what he thought of Roswell’s exciting announcement of a vaccine study that includes ovarian cancer.  He looked curious at me, probably trying to read what my question is.  He said he was surprised it is a phase I study.  That Roswell had a similar vaccine study about 8 years ago that didn’t really prove anything.  He mentioned when he was in residency at Roswell they were studying vaccines.  I must have said “Wow” out laud…  That caught his attention; he said I am not that old…  I laughed saying, that is not what I meant and I have more gray hair than you do…  What I meant by wow was that I didn’t hear anything about a “cancer” vaccine until this past year.  He said it fell under immunotherapy (or something like that, can’t remember the exact word he used).  Studying the immune system in relation to cancer was what I got out of the conversation anyway.  He said you could through your name in the mix.  Then the conversation went to; was I hoping that the vaccine would have an antidotal response and work for me.  I said Yes of course I am hoping for that :-)…  He asked me if I understood Phase I is to determine Toxicity levels for this treatment.  I understood that, and that chemotherapy cannot continue while receiving the vaccine.  He asked the Chemotherapy nurse that was with us what she heard from Roswell, and she simply replied they have there 20 for Phase I.  I said there is always Phase II so it would make sense for Roswell to keep gathering information.  Plus the news release and conference referenced a vaccine study that was done in PA with woman that had Primary Peritoneal Ovarian Cancer and is 7 years re-occurrence free.  My understanding is this study is based on that one; the difference is Roswell is making the vaccine with a projected cost savings of about 50%.  My GYN oncologist said he does not recommend his patients for Phase I studies because of the nature of phase I studies, he generally may recommend Phase II or Phase III.   He said if Phase II or Phase III comes out and says can receive the vaccine with standard treatment(s) he would be comfortable recommending it.  Studies that say vaccine alone, what happens if the vaccine does not work and the patient forgo any traditional treatments?  I said that is a real concern for us hence why we are talking with him and will not make any decision one way or the other without his recommendation.  Lynn feels that he wants his staff to stay in close contact with Roswell Park regarding this study so they have all the up to date information on it.  That is a good thing because the more information he gets on this study the better for me, my family and their other patients… 

Over the past few months I noticed my new favorite word seems to be “believe”.  I have seen it many places over the holidays and many things have had this word on it…  "Believe" is such a positive and powerful word…  It seems I can simply say believe and I feel better, more positive, stronger and it amazes me…  Huh maybe a tattoo is in order… lol  Nah…  I’ll just keep repeating it every chance I get…  :-)  That sounds better and less painful…

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…  ;-)