When you have cancer you become an expert in reading cues.
Actually, when you’re in any serious situation I think that’s the case.
So when the nurse showed me into my oncologist’s office this morning, instead of to the usual exam room, I didn’t even make it through the doorway before forcing him to look at me while I said, “Uh-oh. This is not good.”
The door closed and he turned the computer screen to me. “Well, it’s not awful. It’s not terrible, but it’s a change.”
We looked at the trend of my tumor marker tests since October when I was diagnosed with metastatic (stage IV) cancer. Since that time my markers have declined quite consistently (with one exception which I’ll explain in a bit).
I get my blood drawn every two weeks. Some oncologists might think it should only be done monthly at this point. But my doctors and I are data people. Hey, when the news is good, who doesn’t want to hear/see it as often as possible? When it’s bad news, I could use it less frequently, thank you very much.
This week’s tumor marker was elevated slightly over the one from two weeks ago. It’s almost exactly what it was one month ago. The fact of the matter is had we drawn it monthly we’d be saying it’s stable.
But seeing this one blip now causes conjecture and concern. Now, it could be a natural variation in this test. After all, this test is not precise and does vary. No one tests patients daily to see how much it actually changes over the course of a month or a week. Going back to my earlier caveat about having had one previous rise in the marker: I had it drawn twice in four days when I was diagnosed back in October. Those results showed a rise of almost 5 points in four days — but were considered within similar range. Now I’m showing a seven point rise in two weeks. I’m not going to go into the standard devation and all of that stuff right now. It just doesn’t matter for these purposes.
For now, it’s just a blip. We don’t know if it’s an anomaly or part of a trend. There’s nothing to do but stay the course and wait. I’ll be starting chemo again this Thursday at the same dose as I have for the past few rounds (total of 3500 mg/Xeloda a day, split into two doses, 7 days on/7 days off).
My hands have been worse this round. My oncologist warns me that most people can’t tolerate long term use of this drug. I am not thinking about that. I’m thinking about bearing whatever I can for as long as I can if it’s working. The question is now: is it still working?
My feet are doing well actually (strange to be posting a “foot update” but…). They are very sensitive to shoes so I wear furry slippers at home and at least now that it’s winter I can wear soft lined shoes during the day. I do not have significant pain while walking. That is great in terms of quality of life.
My fingertips are simultaneously numb and very sensitive at the very tips. They are peeling and any pressure hurts. The finger wrinkles where the actual fingers bend (to grip) are white and cracked and sore. But I am able to drive which is a real help.
My shoulder (from the fracture in the collarbone area) is feeling much better. I still don’t lift anything on that side but day-to-day it doens’t cause me discomfort like it did. This is good; it means the bone is healing as the cancer shrinks it and the bone strengthener that I take by IV is helping. I am in discussion with my two oncologists to potentially try a different bone drug next time because I still am having side effects after each round of the IV one (normally only happen the first one or two times). This would be a switch from monthly intravenous Zometa to monthly injection of Xgeva.
After we see what the bloodwork shows in 2 weeks we’ll re-evaluate everything. It might be time for the PET scan, might be time to try a higher dose again of this chemo, might be time to watch and wait a bit more (it would be too soon to abandon ship on this chemo with just two data points).
I’ll discuss all of these issues with my other oncologist next week and I’ll count the days, minutes, and seconds until I get my next results back.
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Damn the blips! (Thank you for the update. Glad to hear your shoulder is better.)
We’ll be watching and waiting with you. xoxo
Hello Lisa, I also was on Zometa and switched to Xgeva. For me personally, have had no side effects on Xgeva, not even the first dose. Hopefully it will be the same for you if you do decide to switch.
xo
Like Pam already said, thank you for the update. Frustrated to hear there are blips. Glad the shoulder is better. Such a mix of an update. Hoping for the best in 2 weeks.
Lisa,
My mother whose condition is very similar to yours has had no side effects whatsoever with Xgeva. Due to her age she decided on Faslodex in lieu of chemo treatment.
You are a daily part of our lives with your remarkable gift for words. We thank you! And, we hope/hope/hope for the best for you.
Alyce
I so appreciate your honest no bullshit blog posts. Thank you for your clear voice and honesty.
Blips suck. And I hope that is all this is – a blip. Will be sending some extra positive thoughts your way.
Thanks for the update. Hoping with you that the raise in the tumor marker at the latest blood work was just a blip. Keep the faith!
Thanks to research there is such a variety of chemo,s to combat cancer – once again, I am glad to be in Bloemfontein South Africa – our Dr,s run one of the most used facilities used by pharmaseutical companies for their trials – a huge benefit for our patients – and for me – whenever I should need it.
Are you going to these appointments by yourself? I hope not, I hope someone is with you. I’d volunteer if I didn’t live in L.A. ASSUME I’m mentally with you….
Yes, I go by myself to these “routine” appointments. There will be so many ups and downs that I need to be able to handle whatever comes my way anyway. I like to do them alone most of the time, to be honest, and I like to do things myself when I am able.
Clarke is always there for the big ones (Sloan Kettering consults, etc.) but I have almost always gone alone to my appointments in the last 6 years. I do PET scans alone, CTs, all of my reconstruction appts, etc.
Friends kindly took me to a few appointments after this latest diagnosis when I needed them. And I know if I ask I will be met with offers. I’m just used to it this way…
Sorry to hear about the blip. I’ll keep reading and keeping thinking of you daily, Lisa.
Blips/Schmlips! FIE ON THE BLIPS!
Take good care Lisa. Sending good thoughts your way.
damn blips is right! thanks for the update…and the good news about your shoulder. all the better for hugs. xo
I was worried about your hands and feet with the Xeloda. Glad to hear that you are driving.
Lisa,
We really must be “soulmates!” I go to all my appointments alone. Most definitely the PET scans and bone scans. There is no news from these long tests and I prefer to be alone with my thoughts/fears/worries/hopes. I somehow feel IF I put a huge emphasis on every time I am downtown Chicago for tests/appointments/therapy, then everyone’s anxiety in my family goes up. If I remain “routine and normal,” then I don’t disrupt their lives. A Mom always puts herself in the back seat, right?
This does sound like a minor setback that may resolve itself as you continue on your treatments. It sounds to me like your are as pro-active as possible and you are receiving gold standard protocols. I wish you to be well every day, and all day long.
I know how hard it is wondering whether the blip is something of concern or not and I am with you all the way no mater which direction things are going. Luckily there are options and I am hoping your feet stay well while I am glad you are able to drive. Lots of prayers, hugs and XoXoXo – Susan
Always thinking about you and in awe that you are privy to all the information you are able to see, I am accustomed to an oncologist who thinks he is somewhere closer to.God status than I am, and is very secretive about results and changes until I stomp my feet VERY HARD !! I finally fired him after he told me he was classifing me NED because “I looked so good” — and this was without benefit of bloodwork or examination being done — and he had asked his nurse to call and summon me to the office because my latest labs were showing indications of METS !! He had forgotten to read my chart before entering the exam room and had (ahem) “forgotten” who he was talking to. No worries – I did not forget to remind him just before storming out of his office telling him his services, such as they were, would no longer be needed. I can’t stand to be “dumbed down” to. He learned.
I am anxiously awaiting your results, as everyone else has stated, My prayers are always with you Lisa, and you have my admiratation for not settling for the assembly line treatment, I have never responded well to it either. I know I do not have to worry about you leaving the office with unanswered questions, and I appreciate that for all of us trudging this road to some semblence of peaceful sleep at night.
May God be with you always,
Fran
You and your family have certainly been through a lot. Hugs and best wishes to you always.
Lisa,
When my mom was on Xeloda, she found paraffin baths and heavy moisturizer to be her best friends. It may help, if you haven’t already, to try slathering your hands in the moisturizer and putting medical gloves on. Mom was only on Xeloda for a round before the doctors pulled her off of it (she had triple negative breast cancer, so it was experimental), so she didn’t experience it for two rounds. Hopefully you can find a solution that works for you!
Best wishes,
Brittany
Alas, the effects are cumulative and your mom’s experience after one round bear no relation to what happens after months. Heat is actually the enemy of HFS ( hand foot syndrome) so paraffin is not recommended once you have been on it and show symptoms. I think this is round 9 for me and I didn’t have problems until around the 5th. Thanks for reading!
Damn the blip. Hope it is an aberration. Thinking of you. As always, wishing you the best possible outcomes.
Blips. I hate them.
But you are awesome:)
jms