Phase IV
I am so grateful that I am able to work most days, the only day I am not working is when I receive treatment and the weekend following my treatment. Other than that I am able to do what I want and I rest when I am tired. I have wonderful support and am healthy and I love to work. It keeps me feeling normal, like everyone else. I just have this one hiccup in my life and it is my CA-125 numbers that are high… I am ready to begin my next treatment with hope and confidence that this will get me where I need to be… Ready?
On to Carboplatin and Doxel. I received my first treatment July 6, 2011. I am ready… Lynn was with me, we got comfortable, had our coffee and snacks, ready for the 4 hours of infusion . I got my dose of steroids, Benadryl and took my E-mend for the platin drug. They started the Doxel slowly and all is going good, not liking watching the red fluid move into me, such is life. When they went to speed it up however, I started to react, my face was flush, breathing was labored and I thought oh no here we go again… Flash backs to my allergic reaction to Taxol last year. The nurses stopped the infusion, put me on oxygen, and gave me more steroids and Benadryl. Where I have my chemotherapy infusion is right at my GYN oncologist’s office. So when I have these reactions my doctor is right there to help get them under control. That has proven to be very comforting to me and Lynn. Lynn was with me the time I reacted to Taxol and now she is here with me through this one. Oh lucky her…
While getting my pre-chemotherapy drugs through the IV, I was chatting with a young woman who I found to be very negative about the whole process she was going through. I had not seen her here before and am use to other woman that I’ve met in this process; we chit chat about what we are going through and help each other with what is working to manage side effects and such. I quickly learned that she is struggling with her diagnosis and treatment. It gave me the impression she wants to be a martyr through this and not everything was adding up that she was saying. Especially based on my experience with the same Doctors and the infusion nurses. She commented that she is experiencing considerable pain with her treatments, I asked if she told the doctors and nurses, she said they told to just deal with it. Now I have talked with the Doctors and nurses about different issues and not once have I been told to just deal with it, so I said that to her. She didn’t respond back. She said she hates that she is the youngest one here all the time. Yes I will give her that, she is younger than me and many days I am the youngest too, but that does not bother me at all and I know there are younger woman than her receiving treatment here too. I generally enjoy talking most days with everyone that I have met there. She asked if this was my first treatment and I said yes on this combo that I am starting today. Then she asked what other treatments I’ve been on so I told her. She stopped complaining. Then I reacted to the Doxel, the nurses pulled the curtain and started to work to stop the reaction. That ended our conversation and honestly that was a good thing for me. I don’t want negative people around me, life is to short and some people do not want to know how to get through the treatment positively they are doing it their way and that is fine. It is an individual journey we are all on, I prefer to be positive and talk with others in that positive light. It helps the time pass and we have had some interesting conversations to say the least.
During the reaction when the symptoms started to calm down, my doctor approached me and asked how I was feeling. I hesitated because I knew they would re-introduce the Doxel once I was not symptomatic and having an allergic reaction is not a good feeling. This was the only time he said you don’t look confident with the treatment. I said no I am very confident about the treatment, I am just nervous about the reaction because the last time I reacted was with taxol and it was re-introduced three times and my reaction just kept getting stronger. He thought for a moment, then looked at me and Lynn and said with a straight face “Well no one had died from it” and turned and walked away. I turned to Lynn and said; huh do you think that should make me feel better… We both chuckled a bit, he does have a very dry sense of humor which both Lynn and I enjoy. We find him very funny and entertaining. I was nervous to say the least when the started the Doxel again. They started it slow and the one infusion nurse pulled her chair close to where I was to monitor me. When I react I get flush in the face first that spreads to my neck. Things are going good, no problem so now it is time again to speed up the drip. Still no problem, I feel a little dizzy but that is from the steroids and Benadryl. The nurse agreed so I decided to take a nap through this. I didn’t want to watch the red fluid flow into me. So I got my iPod out and listened to my favorite music list “momma’s Jam’s”. It has all my favorite upbeat song that just builds me up and keeps me happy. When I woke from my nap the Doxel was all in me and I was starting the Carboplatin. All right one down now I’m flying. Woo Hoo
No more problems with Doxel! Or so I thought.
My next scheduled treatment in August 3, 2011 showed my CA-125 number dropped, what a relief that is such welcomed news. The not so welcomed news was that they didn't have any Doxel. They were trying to find some in the Buffalo, New York area and the only place that had some was one of the Catholic hospitals that shall be nameless in my Blog. I was shocked, this how could this happen, what caused the shortage, when will they have more? So many questions. What does this mean for treatment? He said we will proceed with the Carboplatin and hope we find some in the next few days to call you back in to complete the treatment cycle. It was mentioned this is a short term problem, something about OSHA violations where the drug is manufactured. They even talked about admitting me to the Catholic hospital that will remain nameless that would not share the drug just to get me the infusion, but they were having a hard time coming up with a clinical reason to admit me besides needing Doxel. Well there was no call, so no Doxel for me with this treatment. I went to work after my infusion as it was only a couple of hours and I felt fine (Steroid high for the next few days).
A week later this news report came out talking about the drug shortage and it is not just Doxel, it is more wide spread than that and 15 deaths have been tied to this drug shortage:
The problem range from contaminated materials, to not being able to keep up with demand to profit, not enough money… Hmmm Doxel is off patent and profit obviously is coming into play as only one plant in the US makes this drug. Being a Chemo agent I am sure is complicated to make… Makes me very worried about Doxel and how long this shortage will really last. I am happy that finally someone in the mainstream news is covering this maybe this will help get the attention needed as this is not good for any of us. It is creating a black market or gray for these drugs in short supply and the holder of these drugs are marking them up 600%. Talk about gouging.
There was still nothing on how long the Doxel shortage would last, I am not finding any information readily on it. It is honestly scary…
August 24, 2011 was my next treatment and my CA-125 number dropped again, all right we are going in the right direction. I had to push from my mind how far would have my numbers dropped if I were able to get the Doxel… No sense focusing on woulda, coulda situations that does no good. Well it continues no Doxel again, damn… Going with Carboplatin again and I was told to call each day and check as they were expecting a shipment any day now. Sigh, okay like a good patient I called each day. The nurses said they would call and I said great, but I am following my doctor’s advice and will call each day… So be ready to hear my cheery voice. We all chuckled because they know I will call. I guess the upside is the infusion was only a couple of hours so I’m working from home day of treatment to keep myself busy. I am still not able to find anything about the Doxel drug shortage that I am experiencing with my Chemo treatment as are other patients in the area. The doctor did mention to me though in passing that his infusion clinic shared some of their Taxol drug with the Catholic hospital that refused to share their Doxel with him. I asked if he thought they learned a lesson about sharing, he didn’t say anything, just gave me a look that made me laugh.
1 comment:
keep them coming, so enjoyable and enlightening and informative
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