04 October 2013

Moving Forward

I have thought to sit down to write so many times in the last month.  I actually intended to write a follow up from my last entry while Doug and I were at the beach with Christian and Mary's family.  But, since I procrastinated, there is more to write about, and I guess that is a good thing.

At that same visit with Dr. Lee, (August 29th) where she laid it all out on the table, she talked about my treatment plan.  The standard treatment for any of these epithelial cancers consists of two chemotherapy agents: Carboplatin and Taxol.  These two agents are given every three weeks, times six.  She also told me that I was a candidate for the Intraperitoneal (IP) delivery of the chemo agents. (that's where they infuse the drugs directly into my abdomen through a port in my belly)

I interrupted Dr. Lee and asked her if we had already talked about my previous experience with Taxol.  She said, "No, but please tell me now."  I told her that Taxol was the chemo agent that was used in my second set of chemo during my breast cancer treatments, and that I had some pretty intense side effects. I explained how after just one treatment I had experienced the worst bone and joint pain ever in my life.  And, that after the second treatment, I could no longer walk on my own without holding on to someone, or a wall.  (Taxol attacks bone marrow cells)  Additionally, I had terrible neuropathy in my hands and feet.  My oncologist stopped the treatment.  I was supposed to have four total, but he was so concerned about permanent damage that he stopped that treatment.

She first said that given this information, we would not consider the IP delivery.  And, she said that she was inclined not to use Taxol at all.  If I could only make it through two treatments before, how would I make it through all six.  Dr. Lee said there is a "sister" drug called Taxotere, that has the same active ingredient, but it is a different formula that has less severe contraindications for damage to the bone marrow.  However, it did have it's own unique side effects.  I felt somewhat relieved to know that I would not have to endure the wrath of Taxol again.

I also told her about how plans were made months ago to go to the beach with Christian and Mary and their family the second week of September.  She said that I could wait to start treatments until I got back.  That was nice.  So, the plan was to see her in one week for blood work and final instructions.

On September 3rd, I saw Dr. Lee and she did a final post operative exam.  Then, she told me about a newly released study out of Japan that published their results just last week.  It wasn't a very large study, only about 630 women with Stage II to Stage IV ovarian cancer participated.  But, the results were still significant.  She told me that when she saw the notification, she thought of me.  Half the women were treated with the standard care of Carboplatin and Taxol every three weeks for six weeks.  The other half were treated with a "dose dense" taxol regime.  What that means is that in the three week cycle, on day 1, the patient is given the standard dose of Carboplatin, but a smaller dose of the Taxol.  Then one week later, day 8 they have another smaller dose of Taxol and then one week later, day 15 another smaller dose of Taxol is administered.  This cycle continues over 18 weeks, with no breaks.  You have a chemo treatment every week.

In the standard treatment, the dose of Taxol in 180 mg.  With the dose dense treatment, you get 80 mg each week.  This means that over the 3 week cycle, you are actually getting MORE Taxol (240 mg) but spread out.  The dose of Carboplatin is exactly the same as the standard treatment.

Cycle 1
Day 1 - Carboplatin/Taxol
Day 8 - Taxol
Day 15 - Taxol
Cycle 2
Day 1 (or day 22) - Carbo/Taxol
Day 8 - Taxol
Day 15 - Taxol

Dr. Lee told me that the data showed the following improvements over the standard of care:

The median Progression Free Survival (that means how long before the first recurrence) went from 17 months to 28 months.  And the median Overall Survival went from 60 months to 100 months.

Now, bare in mind this is the median.  It isn't the average, it just means the middle number, also there were participants whose cancer was not as advanced as mine, so while those statistics are impressive, they include patients with lower stage cancer.  BUT,  BETTER is BETTER!  More time, is more time.

However, it would mean that I would HAVE to go on Taxol and not Taxotere, because if we want the benefits that appear to be improved with this treatment plan, we have to replicate the study method exactly.

Dr. Lee asked if I was willing to try it.

Of course, with no hesitation....I said YES!  We both agreed that if I ended up showing the same kind of degeneration that we'd go back to the backup plan with Carbo/Taxotere once every three weeks.

I left with increased optimism. 

I was able to read for myself the article that was published.  Here's the downside.  Only half of the women were able to complete the study due to severe toxicity from the weekly Taxol treatments.  Mostly the issue was due to dangerously low white and red blood cell counts.  60% of the women needed to skip weeks of treatments to help give time for blood counts to rise and a significant number of women needed one or more blood transfusions along the way.  This is a HARSH and aggressive treatment plan.  But then, I have a very aggressive cancer.

Undaunted, I went to the beach and had the most wonderful time with my family.  I sat in the sand while the waves washed over me.  The vast expanse of the ocean was my temple that week.  I prayed every day pleading with Father in Heaven to bless me with the desires of my heart.  I expressed gratitude for my life and for my incredible family and thanked him for specific blessings that have been poured so abundantly upon me over so many years.  I wept so many times as I thought about the beauty of this world and what a gift He gave to all mankind.  

While sitting at the beach each day, my thoughts would go to deep places.  I came to an understanding that gave me so much peace and power.  Let me preface this by saying I totally understand my responsibility to submit to the will of the Lord.  I know for a certainty that His plan for me will always be better than My plan for me.  But, in my deep thoughts, my loving Father helped me understand that he WANTS us to tell him the desires of our hearts.  He wants to know what we want.  He LOVES us.  He wants us to be happy.  As long as I also am willing to acknowledge His hand in all things and that I willingly say "Thy will be done", I believe he will always consider our petitions.  It's not like His will for us was decided and fixed eons ago.  That would make agency pointless.  That would be like predestination.  Why else would we be commanded to pray?  I am coming to believe that our personal prayers and fastings and petitions of friends and family can actually change outcomes.  Dare I say it?  Heavenly Father can change His will if He desires it to be so.  

Nevertheless, His will be done. Always.

So, we continue to pray for miracles.  Understanding, and willing to accept His will.

This last week, I finished my first cycle of treatments.  On Tuesday, next week, Cycle 2 begins with the combination of Carboplatin and Taxol.  3 treatments down, 15 to go.  I am scheduled to finish at the end of January, but that is only if there are no delays due to blood counts or other toxicities. 

Side effects with this treatment plan are cumulative.  My worst day was yesterday.  It was like how I remember breast cancer treatments.  So harsh.  Today was better.  I have nausea and joint aches and I am SO exhausted. Sometimes I wake up with a terrible headache.  I'm still suffering from the after effects of the bowel resection.  Most days, THAT is my agony more than the chemo side effects.  It is those symptoms that make me cry every day.  So painful.  It is torture.

My hair started falling out a little on day 5.  After Tuesday's treatment, it started falling out all over the place.  It will take longer for me to lose all my hair this time, because I didn't get the one large dose of Taxol.  But, it is thinner and thinner every day.

I am so appreciative to all who have brought meals, given me rides, helped me clean or organize in my home.  Also, for your prayers and good cheer. 

Thank you.

I mean, really.

Thank you.

1st Treatment Day - Doug and I waiting for the pre-meds

Sometimes the drugs make me so very tired.

I may feel icky, but never to terrible too enjoy my grand-children.

1 comment:

spragues5 said...

I love you and am always with you. Love, Beth Brubaker

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