Peritoneal Cancer Diagnosis Journey - III

Phase III

Life on Alimta - easy…  Side affects minimal, felt good.  I attributed that to being in better health going into this round of chemotherapy compared to last year at this time.  My one nurse would ask when she saw me how life was on Alimta…  I would always say great, because I really felt not bad on it.  Had quite a bit of energy and did what I wanted.  That I have come to understand was a sign.  We have friends that work in research at Roswell Park Cancer Institute.  They would say “You know chemotherapy is working when you feel awful, when you don’t feel awful it is not working”.  I have to laugh at that now, as there is something to be said for that I have found.

After my third treatment (“The magic one”) my numbers were not coming down…  They continued to creep up.  Sigh…  I have not and will not say the chemo didn’t do something it just was not the magic bullet we wanted and hoped for. 

So what is next in the Doctors magical bag of tricks?  Another combination of chemotherapy drugs (of course and thank God) that a drug assay of my cancer shows potential and we have time to continue to try promising combo’s as I am not symptomatic, I feel good, very strong compared to last year at this time…  So I am ready, bring it on…

The next combo consists of Cisplatin and Gemzar…  Oh boy, Party time again on a platin drug…  The platin drugs are a challenge because it changes your sense of taste and affect your appetite as a result…  Things taste metallic, which really can turn you off of eating if you are not careful.  Back to eating every 2 to 3 hours after treatment…  Not a problem, my family is ready to help do that (I forget to eat sometimes and a little prodding is a good thing for me…).  We are all amazed that the one thing I can always eat while on a platin drug and it tastes okay for me is chicken.  Don’t know why, you would think that would not be the case, however it is… So here’s to eating lots of chicken dishes…

Yes, we are back to 4 and ½ hour infusions it is only for one day so that is very manageable.  And the E-mend drug they give you really help with the side affects.  Lynn and I had to review what regimen worked last year to start that off the bat with this series…  Miralax and Senokot are my friends, gotta keep things moving that truly helps with feeling better relatively quickly.  I spoke with my infusion nurses a couple of times, as I don’t like to these types of medications regularly.  I have to get over that as many who have under gone the surgery I did have issues and Miralax really helps keep it all moving…  That helps keep me a happier person, which my family definitely prefers… 

I have learned recently that this drug combination works together to combat cancer.  It has solid results the problem is people have a tendency to plateau on it.  My first treatment went off without a hitch.  I slept all day after treatment and day two and three are what we call Steroid highs so I am able to work those two days…  I have energy, the E-mends are working and I eat every 2 to 3 hours, I sleep on day 4 and start to come around again day 5 I am back at work.  Each day after that, I feel stronger and more awake.  My numbers after this treatment increased… I’m thinking to myself are you kidding me!  My doctor obviously saw my thought on my face.  He said that is a sign of a large cell kill, which is expected.  Okay that makes sense to me as CA-125 numbers are suspect to changes with inflammations, infections, and such so a large cell kill will inflate the numbers or what my doctor says is a false positive reading.   After treatment 2 my numbers went down…  Hurray!!!  Celebrate with a turtle Sunday from our favorite ice cream place Country Peddler…  Woo Hoo.  First time since August 2010 that my numbers finally started coming down again…  

Through this treatment regimen I started seeing a number of what I call alerts to cut all sugar out of your diet...  That it is feeding your cancer.  Really cut "all" sugar out while in treatment...  Sounds a bit drastic and doesn't all cell generation use natural sugar to do it's thing.  Yes, I understand cancer is a cell and it reminds me of the old debate "starve a fever, feed a cold" or what ever that saying is that debate still goes on.  So I guess this "cut the sugar" debate will go on as well.  There was this one list that they were almost arguing about it which I'm thinking didn't help the person who wrote the question.  My understanding of the human body is if you deprive what it needs it will create it from something else or steal it from somewhere else in your body, like it will convert a carbohydrate to a sugar to do its cell generation.  You don't eat enough calcium it will steal it from your bones... My philosophy is moderation.   I have to maintain my weight and right after treatment eating jello, pudding, yogurt gets me through when I am not that hungry.  I find this helps my appetite for dinner and I don’t lose weight.  So I say if you are going through treatment or helping someone go through treatment offer and have a variety of foods.  Your body needs a variety of things…  So feed it that way…  The biggest for me is when I crave something I have found I always have been able to eat it so I do…  Yes, this means I eat McDonalds filet fish sandwich, I have to laugh because I have not eaten this in like 15 years… But man it tastes good when I am on platin drugs and I feel absolutely okay eating it.

After my 3^rd treatment on Cisplatin and Gemzar I did plateau, my numbers stayed the same…  So what would have been my 4^th treatment in this regimen now has to change.  Change to what you ask?  Let me tell you…

We are now moving on to a regimen that is a staple in recurrent Ovarian Peritoneal cancer.  Carboplatin and Doxel…  Don’t know why but Doxel scares me to be honest.  It is given in a red color solution and watching it go into you unnerves me…  Talk about the mind, makes me laugh…  Really, everything that I have gone through in the last year and a red color fluid unnerves me...  Gotta laugh.

I guess it unnerves me because I’ve heard other patients being put on it the list of side affects to watch for…  and I had hoped I would not have to deal with it.  Well as life is I will deal with it and thrive…  Ready here we go, it is such an adventure…  I am here and living well…  Not gonna go out and run a marathon, well guess that is not true.  I am running the marathon of my life and it is far from over.  It is an adventure, I'm having fun and I have to say an interesting journey I am on…

My Perionenal Cancer diagnosis journey.

Phase II

After hearing the news that the second look surgery was clear of cancer it is truly an amazing feeling.  Thrilled, scared, and looking forward to each day not having to go through the Chemotherapy regimen, trying not to focus if it would it come back.  In thinking back at that day in August 2010 it was so over whelming to hear those words that words to describe it escape me.  

I have read that cancer diagnoses have changed people’s lives, well that is certainly true.  When I received my diagnosis it gave me a number of opportunities, gifts if you will.  It allowed me or forced me to think about what is important to me, what is important to me going forward.  How do I want to life my life as we all only get one, and how do I want to approach this challenge in my life.  I had made the decision in the hospital that I would not let my cancer diagnosis define me or limit me.  That my job is to listen to the doctors and nurses, educated myself on what is going on with me and not read everything out there about my illness as it may not be up to date and it could distract me negatively, which I will not allow.  That I will do what I want when I can and have learned to accept help when I can’t do what I want…  That last part I still work on today… 

With each treatment I went into I bring a confident, positive attitude that the chemo agents are doing what they are suppose to, didn’t doubt it.  I did what I had to do to get through each cycle.  From managing the side affects which like I side in Phase 1 where challenging some days.  Thanks to Lynn we were able to stay pretty on top of them.  I can honestly say I have many more good, fun, happy days than not.  Even when I am tired and laying around I laugh, smile and enjoy those around me.  I have WONDERFUL support from Lynn, Meghan (my daughter), my mom, sisters and brothers plus extended family and friends that the list can go on and on…  I am truly blessed and grateful for all that they have done and do for me each day.   

I started with my follow up appointments in September 2010 and my blood levels looked good.  My CA-125 crept up a bit but that is not unusual right after chemotherapy, which my last one was in August. 

I was feeling stronger, though there are many things I still can’t do right now strength wise so I rely on others… Not a bad lesson to learn, to accept help from others openly and willingly. 

In October 2010 I really noticed my hair is growing back.  It is coming back pure white and fine like baby hair.  Looks cool, I think it is about 1/8^th of an inch all over my head and I should get it cut to even it out…  I think by Thanksgiving or definitely by Christmas I can go without a wrap on my head…  Lynn and I took a trip to Scottsdale AZ for a weeks vacation in warm weather were we could do what ever we wanted even if it was just to sit by a pool and read all day drinking whatever came to mind…  Meghan wanted us to schedule it around her college schedule so she could come too…  We knew this type of vacation would be very boring to Megs who likes to be busy each moment.  We figured out Megs would have enjoyed the Hot Air Balloon Ride (Not getting up at 5am though), shopping in Scottsdale, the Pink Jeep Ride in Sedona and a day hanging at the pool…  Maybe a total of 3 days out of 7…  The other days would be what are we going to do today, just sit around and read…. YEP it was a wonderful vacation…  

In November 2010 my CA-125 numbers crept up again… Not making me happy at this point.  They were not doubling just creeping up.  We spoke with the doctor about what options there were to help determine if my number increase was me leveling off or was something else going on.  We did an MRI, which showed nothing going on.  Cool… Maybe just leveling off, time to get ready for the holidays…  My hair now has waves in it, which look really nice, and I have not had that type of body in my hair in like forever…  This year is our 1^st Thanksgiving being home in like 10 years… Meghan and my niece Katie are Irish Dancers and a group of us would travel to Philadelphia, PA for a regional competition each Thanksgiving.  There are a lot of fun memories over those years spending time with my sister Barb, Katie, Megs, Mom, Lynn and anyone else who would join us.  It was wonderful this year to eat dinner at home with family than at the Marriott… 

In December 2010 my CA-125 numbers crept up again…  Damn…  Again not doubling just creeping up.  We again spoke of what options where there to determine what was going on…  We decided to do a 3^rd look via laparoscopic surgery of the abdomen to see what was going on.  It was done on New Years Eve…  Yes I did not stay awake to midnight to ring in the New Year 2011 I was sleeping…  The surgery looked good, the inflammation that was present in my abdomen in the August surgery was healing, and the lymph nods were shrinking everything visually looked good, clear and positive.  We set my follow up appointment the 2^nd week in January 2011 to review the pathology reports from the 3^rd look surgery. 

Of course when my follow up appointment came I came down with the flu.  So I had to reschedule this appointment for the next week.  Besides getting over the flu, I was feeling really good.  Two doctors came into my exam room to discuss the results of my 3^rd look surgery.  The surgery looked good and positive, the pathology however not so much…  It came back positive for cancer at the cellular level, meaning there are no symptoms of cancer being back except the C-125 creeping up; is it trying to re-establish itself?  DAMN, not what you want to hear.  The positive is I am not symptomatic and it is at the cellular level.  The one doctor said in Europe they do not do anything until a patient is symptomatic.  We want to be more aggressive then that as I am 51 and other than this one hiccup (Peritoneal Cancer) I am healthy.  So on to phase 2 what is next…

The doctors want to try a new drug in the ovarian peritoneal cancer world called Alimta.  Its focus is on platin resistant cancer cells, which my doctor had spoken of previously.  It is a 20-minute infusion, showing very promising results generally known after 3 treatments.  They are given once every 3 weeks and I am told trying new things is a good thing.  There was some prelabs I needed and I had to start taking folic acid and B-12 shots before I could begin.  We decided to give Alimta a try…   A 20-minute infusion compared to the IV/Peritoneal treatment I had just gone through last year…  The IV/Peritoneal treatment was a 3 day, 2 to 4 and ½ hour infusion…  Alimta at 20 minutes to and hour would be nothing…  Hell I can probably work from home in the afternoon…  Sign me up…

My Perionenal Cancer diagnosis journey.

Phase I

The definition for Peritoneal cancer is a rare cancer that develops in the peritoneum, a thin, delicate sheet that lines the inside wall of the abdomen and covers the uterus and extends over the bladder and rectum. The peritoneum is made of epithelial cells. By producing a lubricating fluid, the peritoneum helps the organs to move smoothly inside the abdomen.

Peritoneal cancer looks and behaves like ovarian cancer, but the ovaries are minimally involved. Women who develop ovarian cancer after having had their ovaries previously removed likely have peritoneal cancer.

On February 19, 2010 my Gynecologist diagnosed me with peritoneal cancer at age 51, I still had my ovaries, this diagnosis after weeks of going to see my primary physician and GI doctor for what was thought to be IBS.  They had to immediately do an abdomen tap, which drained 7 liters of fluid, which allowed me to begin eating meals again, though my stomach had definitely gotten smaller.  I had never heard of peritoneal cancer and have found many in the health care profession have not, even in anatomy and physiology college professor have said it does not exist until challenged by a student who’s mother was diagnosed.  She told the professor well my mom was diagnosed with it and she will be relieved that it does not exist (jokingly).  As credit to that professor he did research and by the next class stated to the class that Peritoneal cancer does exist and devoted time to it explaining to the class.

On February 24, 2010 I had my de-bulking surgery and complete hysterectomy that lasted 4 ½ hours, there were complications, which the doctors were able to take care of, and complications during recovery that just delayed my homecoming.  What was unusual at the time was this cancer was not found in my female organs.  Bonus for me I’m thinking…  On March 15^th I was released from the hospital and had lost 39 lbs, my protein levels where horrible from not being able to eat nothing but yogurt for weeks.  I had -0- energy.  My and my family’s focus now was healing so I could be ready for my chemotherapy that needed to begin immediately to avoid any bloating to recur in my abdomen.  My CA-125 numbers when diagnosed were at 10,000 which is unheard of I am told.  They dropped to 5000 after surgery.  My life partner and I decided not to Google this type of cancer (as recommended by my GYN) and focus on healing and getting better…  He recommended the best cancer surgeon and Oncologist for my cancer and they performed the surgery.  My Gyn doctor said it was amazing to watch him work in the OR.  I have been fortunate with the Doctors and the nurses and staff that take care of me each adventure I have…  

We had decided not to research this cancer and focus what needs to be done today to get me ready.  I am not a statistic so I will not read then...  My mom is a 5 time cancer survivor (colon, breast, skin, lung twice), my younger sister is a 1 time cancer survivor (breast) and we had used this approach successfully, focusing on each positive that was achieved in various treatments.  Both are doing very well and supporting me through this.

In March 2010 I met with my Gyn Oncologist that did the surgery to review my chemo regimen.  I began IV Chemotherapy of carboplatin and taxol.  I found I am allergic to taxol, which my Gyn Oncologist had to switch to taxotere and carboplatin.  My Peritoneal Chemotherapy was cisplatin and taxotere.   I had two mediports inserted for the peritoneal chemotherapy.  I highly recommend anyone having IV chemotherapy seriously consider having a mediport insert…  It is done as an outpatient surgery procedure you are awake for.  It is much easier on your veins and you don’t have to have an IV started each treatment and keep your arm in a straight position to not impede the infusion.  The infusion nurse accesses your meditport each time and treatment begins.  I received 5 peritoneal chemotherapy infusions and 3 IV chemotherapy infusions.

During my infusions there were side effects that Lynn and I mastered managing them.  During the peritoneal infusions I really was down 4 days (coincided with home IV’s for 4 days), the 5^th day I began my up swing.  I received a treatment every 3 weeks and did not lose weight during this time period.  After healing from surgery, I was able to go back to work which I found to be life savor, Lynn and my daughter will attest to that...  Guess I was difficult to live with when I was home every day... 

During this time period I experienced my first drug shortage - Cisplatin.  Cistplatin was recalled nationally due to contaminated materials.  My doctor switched my peritoneal treatment to IV which is carboplatin and taxotere.  Fortunately the manufactures were able restore the drug and the shortage was short lived.  There is also more than 1 plant that makes Cisplatin…

In August 2010 my CA-125 number reached 170 (down from 10,000)  which again these numbers are unusually high... I have been unusual my whole life...  My doctor did a second look surgery via laparoscopic surgery of the abdomen.  The pathology came back negative for cancer.  My doctor, me and my family where thrilled...  I was feeling good and looking to have hair again.  I was to do monthly follow up with him monitoring my numbers, blood counts, and over health.  I can do that...