Saturday, April 28, 2012

Updating on Tamoxifen

It's been a while since I last blogged and just realized that I never did update you on how my appointment went with my oncologist and how my infusion went this time around. So, here's to updating.
To say that I was nervous is the understatement of the year. The closer my appointment time got, the higher my heart rate went. I don't know why I was so scared to ask my doctor to let me have time off of Tamoxifen unless it was because if she said "no" I would have to tell her that I was going to do it anyways (and truthfully I had already been off of it for 4 days). So, we went through the usual question/answer session about how I am, how the pain is, how the infusions are going, and then came how is the tamoxifen. I glanced at David, and then told her that it was HORRIBLE. That my legs were hurting terribly and that they were cramping at night too. She did affirm that it was most likely a neuropathy caused by the chemotherapy and Tamoxifen. She offered to call in a new drug called Neurontin that helps with neuropathic pain (and incidentally, hot flashes too). I told her that I would much rather take a break from Tamoxifen and let the pain heal itself by getting rid of the source. She asked how long I wanted off of it and I told her until September, when I finished the IV treatments. She did say that that was entirely too long and that she was not comfortable having me off of it that long. We finally compromised on staying off of it for 3 months (mid-july) and then we would re-evaluate. She thinks the risk is too high to be off any longer, so I agreed with this little "medication holiday" and am happy about it. I appreciate her willingness to allow this and the concern that she also showed me. I told her to go ahead and call in the Neurontin in case I needed it but that I probably wouldn't fill it unless the pain just didn't subside.
After that, I went over to infusion and had, yet again, another wonderful nurse, Melissa. She was awesome!!! Treatment went great until the VERY LAST minutes and then I was struck with horrific abdominal pain and severe nausea...dry heaving and all in the chemo chair. I didn't have any nausea meds ordered, so David gave me another Marinol pill and then a few minutes later the nurse came in with an order for Phenergan and a syringe filled with it. By the time the nurse practitioner came over to evaluate me, I could barely state my name from being so heavily medicated. The Marinol had kicked in and the Phenergan (because it goes into my port) gets into my system instantly. I don't really remember much after the NP came in but I woke up the next morning in my bed so I know I got home safely and slept it all off.

Next treatment is May 10th. Until then, I am hanging in there, still dealing with pain despite being off the Tamoxifen for 2 weeks now. I am going to give it another week and then get the Neurontin filled if the pain doesn't improve significantly. Dr. Mayer did say that the symptoms that are also being caused by the Tamoxifen probably would subside while I am off of it, but that when I start it back that they will come back. I'm okay with that. Right now, I just need a glimmer of hope. Hope that once I hit the 5 year mark and am allowed to be off of it forever that the symptoms will forever be gone. Sometimes, a little hope is all that a person needs to keep moving forward in this journey called life.

Romans 4:18 - Even when there was no reason for hope, Abraham kept hoping and believing...


  1. Neurontin worked wonders for me. I began taking it after 6 months of physical therapy. It got me through 6 more months of intense therapy and reduced the effects of the nerve damage in my arm and hand.

    Praying for the pain to subside my dear friend. You are an inspiration!

  2. Bravo for you! Congratulations on the med break and kudos for your bravery. I just thought I'd let you know I keep up with your blog (and have it linked from mine, so probably some others do, too).

    I love the look of the header and the beautiful smiles!

  3. HOPE and PRAYERS for you and your family.