Sunday, December 25, 2011

Peritoneal Cancer Diagnosis Journey Phase X


Phase X

December 13, 2011 is here and we met with my doctor…  The results were mixed sort of…  My CAT scan looked good.  There is improvement from my last one a year ago, which is very good.  My CA-125 increased though by 8 points.  I am thinking really how annoying...  We continued talking about adding Avastin to my current regimen of Carbo and Doxil.  I was concerned about the one side effect of bowl perforation.  So I asked when this occurs what is the common denominator those patients had that may have contributed to it.  Seems if there are tumors attached to the bowel at the time it is administer this is one of the contributors.  This is because Avastin restricts blood vessel production to the tumor, which in turns with Chemo causes it to die quickly resulting in a whole or weakness in the bowel.  When tumors die with chemo it is a slower process that allows the bowel to heal as the tumor goes away.  The CAT scan didn’t show any of that so it was decided that my doctor would add Avastin to my current regimen of Carb and Doxil.  We have not tried Avastin yet, so lets go...  Before treatment will start I have to have another chest x-ray as the CAT scan did show fluid in both lung linings.  The left lung looks like it is resolving but the right lung is not.  So across the hall I go for a chest x-ray…  When I got back we started the infusion of Avastin, it is going to take an hour and a half this treatment, then they will continue with Doxil followed by Carboplatin.  Wow it is going to be a long day…   Lynn ran to Tim Horton’s to get us coffee and snacks…  yum…

Got through the Avastin infusion, no issues.  Woo Hoo!!!  Got through the Doxil infusion no issues again…  YES!...  And got through the Carboplantin…  All righty… The Chemotherapy infusion today was uneventful...  My one infusion nurse Jackie said with you that is always a good thing…  We all chuckled as twice with new drugs I have had allergenic reactions a number of times as they re-introduce chemo agents trying to get your body to take the toxic substances...  So it is an adventure when adding drugs with me...

When I got home and was fast asleep napping, my Doctor’s office called and said that I need to have my right lung tapped as the x-ray showed moderate increase in fluid.  My doctor wants to give Avastin a jump-start and have the fluid removed from right lung…  We had talked during my exam that Avastin also helps with fluid so that makes sense.  I will be getting a call by the doctor that will remove it.  I hope to have it no later than early next week so I feel good for Christmas… 

The call from the doctor came on Wednesday; my choice is Friday or Monday.  I had this procedure done one other time, in February 2010 when I was still in ICU after my debaulking surgery.  I was not improving after surgery so they did a CAT scan and found my right lung was full of fluid so they tapped it in the ICU.  That really helped get me moving in the right healing direction…  This tap will two as I am not having an overly hard time breathing…  So, I opted for Monday, as I will be rebounding from Chemotherapy by then and will feel better to under go this procedure.   So bright and early Megs and I arrive at the hospital (7am…).  I asked Megs if she wanted a dunkachino thing on our way to the hospital and she said nah…  I was the 1st procedure that morning which is good…  They check me in and off I go…  The procedure goes good, only one hiccup, that I would describe as I hyperventilated when the fluid was drained.  Now that was a weird feeling.  I have not had that happened before and I will admit was really uncomfortable while I went through it.  They slowed the procedure when I became a bit uncomfortable to allow my lung to expand and I don’t know started it again which triggered what I would say was a spasm.     The nurse that was watching my stats said your o2 is 100%, okay that’s good my funky breathing is getting enough oxygen in me, phew.  They administered some pain medication, sat me up to help get my breathing to calm down…  That really helped… In about 10 minutes my breathing became normal…  I could feel my lungs working; you cough a bit which is good and expected.  Means your lungs are expanding.  I have to go to be watched for about an hour.  On the way back to recovery I got nauseous, yes that happens to me with pain medication.  By the time I got back I was getting sick.  When the movement of the cart stopped I started to feel better.  From my past experience I know I need anti-nausea medicine.  The nurse asks me if I do and I say, yes if you want me to go home today (laughing)…  So the doctor approves this for me and I am starting to feel better drinking my ginger ale.  When they release me Megs and I drive through Tim Horton’s to get COFFEE…  Yes!!!  Oh it tastes so good….  I don’t remember the lung tap from 2010 taking this much out of me, but then again I had other pains that were much more noticeable…  I was not back then in the same shape as I am today…  I am much better today than then, no comparison.  Now I just take it easy today and allow my lungs to adjust or heal…  Not sure what they have to do.

I decided to follow up with Doxil website and see what is up with the drug shortage…  Maybe it is subsiding, they said by late 2011 it should be.  I found this article on the NY Times that was posted earlier this month.  The plant that makes Doxil completely shut down in November!!!  There is no more Doxil available they distributed the last of it earlier this month.  There will not be any until late 2012…  The article says that there have been a number of consolidations in the Pharmaceutical industry which is resulting in only one company making a particular drug.  With that, one hiccup like a failed inspection and the drug leaves the market until it is remedy.  What about the patients that need it?  Doxil makes such an impact on re-occurred Primary Peritoneal and Ovarian Cancer and now doctors and patients have to try other drugs that may or may not be as successful and may be harmful with the side effects... 


Of course I go to Doxil website and found this letter dated 12/23/11, from the president of Jenssen discussing what happened.  They have suspended production there due to equipment issues and needing long term solutions.  Really, they couldn’t figure this out and immediately work for the “long term solutions”.  I can’t help wondering if they are hoping the manufacture that maybe taking over production in several years will expedite the conversion to doing this sooner than later.  Though the other manufacturer sounds like there still talking about it…
Why not have a couple of plants make a drug then this could be potentially adverted or be not as sever and long term.    I will be checking back in early 2012 watching for updates… 

I also found the FDA drug shortage list, I was curious what drugs were there and they also list a brief reason.  When you read 256 drugs are in short supply it sounds like a lot, when you see the list it does put it into perspective… 


On another note there have been a number of positive articles posted about ovarian and primary peritoneal cancer.  This article talks about how the ovarian cancer cell learns to adapt to chemo so it is not as effective and why that is.  How does it adapt…  This is why it is so difficult to treat and why reoccurrence is a challenge for all concerned.

I find so much hope in this article…  When I read it I was like a little kid at Christmas time…  They analyzing the ovarian cancer cell and then developing a vaccine to take advantage of that cell analysis shown flaws.  Basically kicks your immune system to kill those nasty cells…  The thought is the same process would be used in reoccurrence with the expectation that the analysis of the new cell would result in a tweaked vaccine targeted at that specific recurrence cell.  Maybe we need to move to BC to get into the study in a few years…  Better yet maybe the trail will be offered here…  Bonus..  This is very exciting stuff coming up. 
I know there have been strides in this research for other cancers.  Friends of Lynn and mine were just talking about this the other night and I said I was not aware of any tied to ovarian cancer.  I am thrilled to see the same is true for this cancer…  Woo Hoo the future and bag of tricks will keep growing…  Have to dance around the house again…  Laughing.

And this article that announces Congress Funds Ovarian Cancer Research and Education!!!  Another WOO HOO!!!  Another Dance Around The House…  WOO HOO…
Kay, now I have to catch my breath…  It will be run by the department of defense, that does not make a lot of sense to me, except it is a war on cancer…

In my web browsing I found this article that I felt should be included in my blog.  15 cancer symptoms women ignore, cause that is what we do and I wish we did not…  Hind sight is 20/20…
So spread the information…  And don’t be afraid to ask your doctor to refer you to whoever can diagnosis you quickly…  Going to multiple doctors to narrow down what is going on is a good thing, as symptoms’ may not be related to what is really going on.  Early detection for any illness is critical to better outcomes…

I want to wish everyone a very happy holidays season and a Happy, Healthy, Peaceful and Prosperous New Year for us all….

Saturday, December 10, 2011

Peritoneal Cancer Journey - IX


Phase IX

Wow, it is our wedding day, Black Friday 11/25/2011.  I can’t believe the day is here.  Guess all the arrangements that are needed are set, just a few errands to run and we will be all set for the ceremony.  The ceremony was at 5pm and Mother Ellen made our wedding ceremony all we dreamed of…  Over the past 6 plus years we worked tirelessly with many people to make this dream a reality…  The reception was a wonderful celebration of life.  I had an absolute blast and from talking with family and friends they all had fun too…  We planned our reception to be non-traditional… At dinner the guests started to clang the glasses…  I arose from my chair; Lynn and I had decided that we would tell the DJ that if anyone clanged the glasses they had to kiss the person on the right.  Well with visiting with everyone before dinner I forgot to mention that part to the DJ… until the clanging began…  Well the announcement of kissing the person to your right when clanging the glasses was met with laugher and resulted in a much quieter dinner…  I overhead my cousin’s wife tell their 5 year old son, well you clanged your glass now you have to kiss daddy because he is on your right…  The little boy, Massamo was like “no” that’s not how it works…  Yes, I am so glad we came up with that one…  The only other traditional thing we did at the reception was the first dance.  We met with a dancer who helped us choreograph a dance to our favorite song The Story by Brandi Carlie.  We actually love the version done by Gray‘s Anatomy cast.  It is a little peppier than Brandi’s version, which was easier for us to dance to…  The dance was a lot fun once we started, I have to laugh because we almost chicken out, but once out there we simply had FUN…  And I had fun all night, between talking with family and friends and dancing… Dancing was wonderful, feeling so much alive, normal, not a care in the world, and I was very surprised at how much energy I had…  Didn’t tucker out at all during the party.  Lynn and I were both surprise that we lasted to the end of the reception, which was midnight… 

After the reception we had our twin baby nephews spend the night with us, Joseph and Jason… They are absolutely adorable and we didn’t get any sleep.  That is perfectly okay because it is the first time we got to meet them and spend time with them.  They live out of state and we have only seen them on facebook.  Thank goodness for facebook.  It feels like we have been watching them grow since they were born 2 months ago.  Their mom, Jesse slept 8 hours straight that night.  The most she has slept since becoming pregnant with them.  We were thrilled to have spent time with them, get to know them and their personalities…  We told Jesse and Kyle, their mom and dad, we can sleep Saturday and Sunday so don’t worry about us…  It was so much fun and they are so precious.  Even seeing their bright eyes at the 3 am feeding, laughing…  It brought back memories of when Megs was that age and looking into those bright eyes at 3am thinking, oh please don’t be so awake… It is nighttime…   

Monday I had my CAT scan and blood work.  I have not had a CAT scan in over a year so I am probably over due.  With my CA-125 number increasing a bit last visit, my doctor wanted to see what if anything is going on in there.  I am feeling a bit tired right now.  My guess it is the busy weekend we had with Thanksgiving, our wedding, having our baby nephews spend the night with us.  Well Tuesday afternoon I got a call from Laurie, one of my Chemo Infusion nurses.  She informed me that my hemoglobin was down to 6.7, normal is 12 to 15…  Okay so maybe my tiredness isn’t just tied to the fun weekend we had…  Laurie said, you have be feeling it now…  I said well I am a bit more tired than usual; I just chalked it up to a crazy weekend.  I have to have another transfusion; my choice is Wednesday, or Thursday…  Oh that is not a hard decision, I will go Wednesday as Thursday as I am training someone at work who just started with us last week.  After the transfusion I will be feeling better.  So bright and early Wednesday I am at the hospital infusion clinic for my transfusion.  The nurses are remembering me from my last transfusion, which was not long ago.  I was very surprised at how I felt 20 minutes into the transfusion.  I really started to feel better.  I mentioned this to the nurse and she chuckled, she said your count was really low, and that my pulse for how low it was, was not bad.  My pressure was it’s usual 110/67.  The Doxil and Carbo regimen is tough on my red cells.  My white counts are great, Laurie said they are like 31,000.  So that is good.  In January and February of 2011 my white cell counts were low from the regimen I was on, which is partly why I caught the flu and an upper respiratory infection that took me months to get over.  My primary doctor said I have to be careful because my immune system is compromised being on chemo.  The respiratory infection left me with an asthma type condition that I had to use an inhaler for.  It didn’t get better until the weather broke, which was not until June this year…  We had such a wet; damp, rainy spring this year.  This respiratory infection left a scare in my left lung that is being watched by my doctor to make sure nothing changes.  I had a breast MRI that showed no breast cancer, but it did show a consolidation in my left lung.  When my GYN Oncologist reviewed the report he ordered a monthly chest x-ray to monitor it, said he was not concerned as my CA # at the time decreased.  So, I have had a couple of chest x-rays that showed the scare (consolidation) in my left lung and some fluid built up between my lung and lung lining.  There has been no change in the x-rays so we will see what the CAT scan shows in my chest, abdomen, and pelvic area…  I am still re-affirming my increase is due to the Reiki treatment I had…  We will find out the results during my visit, which will be 12/13.  Coming up soon…  I am always nervous before my Doctor’s visit after a CAT scan…  I know being a bit nervous is completely normal with the unknown of the results.  I focus on how good I feel, not symptomatic, only wish I have besides being cancer free is my endurance, that it would be better.  I do get frustrated that I have to acknowledge my physical limits and honor them to keep me strong and healthy.  So I nap or rest that allows me to do what I want to do…  After the holidays Lynn and I want to mall walk 2-3 times a week that should help…  Plus all those sales…  Oh my, our poor check book will get a work out too…