Decisions and Goals - Denise Neish

Posted by | September 30, 2014 | Drugs, Thoughts, Updates | 5 Comments

The last few weeks I have been trying to figure out what I should be doing. I thought I had it all figured out after we went to Houston, because I felt really good about my plan to get on a CDK Inhibitor trial as quickly as possible. The frustrating part came when I tried to follow through with my plan and found that all options either took longer than I thought they would, or involved more travel on a regular basis than I would like.

I thought of going anywhere in the country to get on this trial as soon as possible, but there is a lot of monitoring when you are on a trial drug, and I would have to travel frequently for that. It didn’t seem worth the commitment for a lot of future travel when I would be able to get on the same drugs closer to home just a couple of months later.

My oncologist at Huntsman, Dr. Buys, did not seem overly concerned with the idea of me waiting another couple of months to begin treatment, but I did not feel comfortable with that idea at all. I had already waited two months, and did not want the cancer to spread any further.

I have to be off all treatment completely for 3 weeks before starting on the trial drug, and so I didn’t know if I should get on another drug if there was a possibility I could begin a trial soon. Also, taking certain drugs would make me ineligible to be on the trial drug. (There are very strict criteria that must be met to be allowed to participate in this trial).

Finally, after seeing all the wheels moving slower than I wanted them to, I decided that I needed to get on something while I waited for this trial. I still feel like it is the right thing to get on the CDK Inhibitor, and it will be available to me at Huntsman (so no travel) within the next 3 or 4 months, but until then, I am taking Tamoxifen. It does not make me ineligible for the trial drug, and it can be an effective drug, although it would definitely not be my top choice right now. But I do feel good about being on something that can fight the cancer while I am waiting. And I am glad I decided to not take any drugs that would make me ineligible for the trial, or that would require me to travel all the time.

The side effects of Tamoxifen are minimal. Basically my body temperature is hotter than normal, and sometimes I feel slightly dizzy, but not too frequently. Really, I feel great, to be honest! I’m still running, and have plenty of energy.

I have also spent the last couple of months reworking my psyche. I spent two years with some hope that I was done with cancer (although I always knew it was very likely to return sometime), but I liked having that possibility that it was gone forever. Now that it has returned, we know it was never completely gone. But honestly, not a lot has changed for me. I’m not starting some crazy treatment that effects my quality of life, and life is going on as normal.

My goal is to continue to feel great and take good care of myself, while focusing on the things that really matter the most in my life. Cancer is not going to steal all my attention and focus. I will go to doctors appointments when necessary, and take the drugs I need to take, but in between those doctors appointments, I am not going to be a patient all the time. I am a mom, among other things, and there are people who need me to be me.

I am a happy person. I am so grateful for the many many blessings I have in my life. I love my husband and my children so much, and they bring me so much joy each day. I have deep friendships and wonderful extended family. No ability has been taken away from me. I feel healthy, strong, and capable of doing many good things in my future.

I will let you know when I am able to start on the trial drugs, or when I have any updates or scans.

Thank you all for loving me and caring about how I am doing. I love each of you, and thank you for the comments and messages of encouragement I have received.

5 Comments

  • chrissy D. says:

    Dear Denise……
    I think of you and am grateful for your updates, I think of you often. I hope that you are happy and well—You and your siblings are so very dear to me. I remember our Kirksville shenanigans fondly. Sending love and a big hug. (tell Jeanette I say hello!)
    Love,
    Chris

  • Catherine Pavia says:

    I’m so glad to get an update! I was wondering how things were going, but never knew quite how to ask without prying. I’m glad you feel peaceful and resolute about your decisions. Joe and I will continue to pray for you and your family.
    Love,
    Catherine

  • Nancy Kramer says:

    Denise, you are such a fighter! I love your optimistic attitude, fun-loving personality, and persistence! You will win this battle, and your friends and family are cheering you on.

  • Linda pulaski says:

    Hello,
    I am on the Palo trial and wondered if you got accepted yet. I am in Miami Florida. Treatment st university of Miami. Can u send me info on you.
    Thanks. Linda

    • Denise says:

      Linda,
      I have not started on the trial yet. I am still waiting for my hospital to approve the trial internally, but that should happen soon. In the meantime I am just taking Tamoxefin. How long have you been on the Palbo trial? How does it make you feel?
      Thanks for reaching out to me, and best of luck with your treatment!

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