It’s 4 A.M. and I’m up with side effects from yesterday’s Zometa infusion. The monthly IVs to help strengthen my bones are doing their job but I always have one night of flu-like symptoms. Tonight I’ve got numb feet, a splitting headache, and the sweats with a fever. I know it will only last a day. I started round 7 of chemo last night as well. Again I will continue with my regimen of 3500 mg a day of Xeloda split into two doses: 3 pills in the morning and 4 at night. The good news is that even at this slightly decreased dose the chemo is working. My bloodwork yesterday showed my tumor markers again decreasing in the last two weeks.
Still no appointment to have a repeat PET scan. That will come when the numbers plateau. I am expecting that to happen pretty soon as the numbers have declined a lot, but just can’t keep going down. I’m thinking it will be February for that.
Yesterday was my first time at my local oncologist’s office since they moved back into their fully renovated location. The space is beautiful, there are many changes including the way the chemo room is set up. The social aspect of chemotherapy and its administration is an interesting one. Some people like talking during chemo. Some like watching TV. Some like total quiet. The new setup is more conducive to privacy. While most of the chairs are out in the open, they have curtains, dividers, and positioning that make it difficult to see into the next space and/or talk to any other patients. I will confess I am usually a privacy person. I go to my infusions alone because they piggyback on my doctor’s visit and these particular ones are very quick (actual chemo infusions can take any amount of time. Some are pretty fast, others can take all day. The advent of the iPad and smartphones has made passing the time a whole lot easier).
The Zometa is not a chemo treatment, it’s just an IV-administered drug. The drips only last 15 minutes once the IV is set and we get started. I have had many occasions to sit with other patients and chat during chemo and Zometa infusions. While initially one who thinks I would rather be sitting alone, I always have ended up happy I had the opportunity to get to know someone else going through this. I always learn something. Of course people are there for every kind of cancer, so frequently I am learning about other cancers and how they are treated. I am (almost!) always interested.
The new exam rooms have curtains which are woven with the phrase “Speak your truth.” I liked that.I also liked the new chairs. These have a massage button and heating ability! I snapped a photo and captioned it “Love the new chairs: heat and massage. Too bad about the cancer!”
I had long talks yesterday with both of my oncologists (local and at Sloan Kettering). I will share some of those discussions in the weeks ahead.
While the description of some of the chemo experience will be nothing new to those readers with cancer, I will continue to share descriptions of some of the daily routines for those who have had the good fortune to have no idea what goes on inside cancer centers. What I can say is that the doctors and nurses are filled with love. I have a team– from the phlebotomist who has taken my blood for the past 6 years to the doctors to the nurses whose smiles and hugs and concern warm my heart every single visit– I am well cared for and I know it.
While I was in the chair yesterday I put the final touches on my Sloan Kettering donation page. I will be making a separate post about this experience soon. I am flabbergasted: in the first 12 hours the page has gotten $6500 in donations. This money is earmarked: it goes to metastatic breast cancer research at Sloan Kettering.
I thank each person who has donated so far. I am truly astounded at the outpouring of support. Thank you on behalf of patients like me. Thank you to friends and family who donated and total strangers who have too. I know that this is a difficult time of year for many, and making charitable donations may not be in your budget right now. That is just fine. Support comes in many different ways and “free” words I get daily via comments, email, and tweets are appreciated too.
Link to Twitter
Thanks, as ever for your insight. I learn so much from your posts. I am delighted to hear that the chemo, for all it’s nasty side effects, is working, really delighted.
Hugs, as ever, from this side of the Pond.
xxx
Lisa I had my 1st Zometa infusion Wednesday. I woke up in the middle of the night with chills and severe headache etc. This morning I get up and read about your zometa experience. Although it REALLY sucks that anyone has to experience these things it sure does help to know we’re not alone. Thank you. Barb Bristow
I just made a contribution to your campaign at Sloan-Kettering. I have also posted a link to your campaign website on my Facebook page, and I have encouraged all of my friends and family to consider contributing. I am confident your campaign will far exceed the $20,000.00 goal. Metastatic cancer is poorly understood and research into the disease is vastly underfunded. You are doing a very good job of bringing this terrible condition out of the darkness and raising people’s awareness. Keep up the good work!
Lisa,
Just curious about the Zometa. I am getting Xgeva which is a shot. I understand it is the same, if not more effective than Zometa. Have you asked about Xgeva?
Be Well
I am definitely going to ask why I’m on one and not the other next visit. Someone else raised this point too. Thanks very much for bringing it up. Do you get any side effects?
Very little side effects from Xgeva. A little bone pain, maybe a 4 out of 10. It is a newer drug for bone mets. Zometa is still a great choice but my medical oncologist recommends Xgeva. I am being treated at a NCCN hospital in downtown Chicago. If you want more information, please feel free to send me a private e-mail, Lisa.
Be Well
Lisa,
Thank you for YOU in your writing! Not only do your insights resonate with us, but YOU resonate with us which is a really special thing.
Stephanie Zimmerman, a friend of AnneMarie’s
Oh so happy to see a new post from you! Maybe my old bookmark was keeping me from the update, but I must say, I have been worried about you. Sending you Big Love and unceasing prayers, Deborah