August 28th, 2014 §
The last week has been stressful. Unfortunately, my bloodwork shows that the chemotherapy regimen of Carboplatin and Gemzar is losing its effectiveness. It’s time to start looking at options for what to do next.
We watch my tumor markers very closely and check them each chemo cycle (every three weeks). Once there is evidence of an increase in the marker number, my oncologist and I start to construct “if/then” decision trees. I know from earlier this year how fast metastatic breast cancer can spiral out of control. I don’t want to have that happen again if I can avoid it.
There is no guarantee that any given treatment will work. Many chemotherapies won’t work at all. One that works in 50% of cases is considered a great option. If they do work, they won’t keep working. The cancer will mutate, become resistant. We seem to be there again.
There are options to consider: clinical trials, chemotherapy, targeted therapies. Clinical trials are becoming harder for me to qualify for because I have already received too many different chemotherapy drugs. Most of the trials for metastatic breast cancer patients limit the number of chemotherapy agents to two. I’ve already had Xeloda, Taxol, Carbo and Gemzar. I simply can’t be considered for most of these trials.
At this point we are exploring a few options and using the next few weeks to investigate what trials are currently open and enrolling patients (they often take batches of new patients in clusters). The main issue, however, is if they are trials I actually am interested in. I need to look at the science behind each one and try to balance the risk of trying it versus other treatment options. Enrolling in a trial means having a “washout period” with the patient receiving no treatment at all (usually 3-4 weeks) before starting the protocol. This can be a precarious position to put yourself in if you have already been on a treatment that has become ineffective.
So where are things for the immediate future? For now our plan is to go through one more round of this chemo combination but do it at a higher dose and see if we can get either a response or stability at least. That will buy us a few weeks to gather information on what trials are available and what we want to do.
As far as my update for the week, I had chemo on Tuesday and I needed another shot of Neulasta yesterday to boost my white count and thereby restore my infection-fighting capability. The chemo now knocks that down every time and I can’t recover on my own. Once again I will need a transfusion of red blood cells tomorrow because my hemoglobin level is too low. When this happens I don’t have enough oxygen-carrying capability in my blood to allow me to function normally. I get short of breath just walking or standing. This is a predictable part of some types of chemotherapy if you are on them long enough. After enough cycles of constant chemo the body just can’t compensate for what is killed in the collateral damage of treatment. Not all chemos do this, but mine does.
So the news is not what we want. It’s hard to hear. This chemo combination did a great job at shrinking many lesions in a short time. I am functioning in a much better place than I was this Spring, but now I worry that things will progress quickly before we find something new that works. I wonder what will work. I wonder how long it will take to find it, and what kind of shape I will be in when we do. If we do. At this point there are enough options that I do still think it’s when, not if. But this day has come sooner than I’d hoped.
August 22nd, 2014 §
Grow up faster,
Need me less,
Reach the sky,
Stand up tall.
Make time go,
Speed it up,
Get it done,
Don’t look back.
Hear my voice,
Feel my embrace,
Know I tried,
Look straight ahead.
Keep forging,
Thinking,
Feeling.
There is no choice,
This world is all there is,
Make it last.
Ours will be far shorter a time than it should be:
Years compressed into months, days, hours, minutes.
It will never be long enough,
It simply could never be enough time with you.
August 17th, 2014 §
My most recent round of chemo almost three weeks ago fell on my 45th birthday. I didn’t reschedule the appointment; I got up at 5 A.M. as planned and spent the day going to Sloan-Kettering getting my 7th Carboplatin and 14th Gemzar infusions. It seemed a fitting way to spend the day, doing what I can to see as many more birthdays as possible.
Thank you to those who donated to my fund for research on metastatic breast cancer at Sloan-Kettering in honor of my birthday, I so greatly appreciate it.
My blood counts finally are having trouble rebounding between the constant hits. The blood draw that they do to check my counts before chemo showed that my white count and ANC were the lowest we’ve seen this year (this means the patient is dangerously susceptible to infection). Chemo is sometimes postponed under these conditions but we opted to proceed. Twenty-four hours after chemo I received a shot of Neulasta to spur my bone marrow to make more white cells.
This type of injection often causes intense bone pain for days afterward. A three day regimen of over-the-counter Claritin (night before injection, night of injection, and one more the night after) seems to help many people with this pain. I did the Claritin and did well after (though I tolerated them well when I had them 7 years ago). If you suffer from terrible bone pain after Neulasta shots it might be something to ask your oncologist about. I learned about it from the nurses on my team.
My red blood cell count also took a hit the following week after chemo. I needed to get another blood transfusion. I’ll need Neulasta and blood transfusions more frequently now as the cumulative toll of this chemotherapy is taking effect. Muscle pain increased significantly this cycle as well. For days I was unable to bend over to even pick something off the floor. I couldn’t walk more than a few steps or leave the house. I’ll be meeting with my palliative care doctor on Tuesday to try to get some ideas on the best things to do for this new development. I’ll take this opportunity to remind you that palliative care does not equal hospice care. It is NOT for end of life care only. Palliative care is supportive care. The specialists help with all side effects at any stage of diagnosis/treatment.
Every day brings something new. It’s definitely getting more challenging in some of these ways but the good days are so grand to have.
School is going to start in another week and on the good days I am busy taking the kids to buy all of the things they need to start the year. It’s nice to be able to do some of these traditional August things with them. I treasure the most mundane activities of buying a new baseball glove, picking up school supplies, getting the back-to-school haircuts.
On Tuesday I will be back again for cycle 8 of Carbo/Gemzar; there won’t be a family summer trip. It’s been tough to see all of the photos online of everyone’s trips and summer fun and adventures. Cancer is a thief, stealing the carefree week my family and I should have had.
I always think these medical updates must be rather boring to read, I confess I hesitate to write them. I will probably start sharing more frequent quick updates on my blog Facebook page for those who are interested.
I’ll leave you with a few photos that make me smile. One is a new one with my beloved medical oncologist, Dr. Chau Dang (on my birthday). I couldn’t do this without her leading the team that treats me. The next one is part of my front garden in bloom last week. One is of our corgi, Lucy, who keeps me company on these housebound days.
And something I wrote a while ago that I read almost every morning:
Make the most of this day. Whatever that means to you, whatever you can do. No matter how small it seems to you. Don’t waste it.
I hope you all have a good week and I hope to have a post about resilience coming soon…
August 4th, 2014 §
They were already seated when we arrived, a sea of white sitting cramped.
Mostly couples, though some were in girl groups.
They didn’t rise when we needed to pass by.
Clearly that effort would be too much.
I know how that feels.
Almost all wore glasses, most eventually pulled out bags of snacks or sucking candies.
No one texted or emailed or checked the time on a phone.
They all had small watches on their wrists for that.
In front of me a man had a bandage on the top of his head, white gauze perched amidst his silver hair, a good head of it.
I decided a funny looking mole, irregular in shape, had lain there recently; his wife pressed him to go see the dermatologist to have it checked.
The two looked out for each other, you see, having been together so long.
The air was still and thick and choked me as the minutes wore on.
I could see the veins protruding on the back of their hands, the wrinkles, the hunched shoulders.
We were the youngest there.
And while I felt more like them in many ways, closer to the end than to the beginning, I realize I am an outsider in every group.
There are few like me.
My hair won’t get that white, you see,
My hands won’t be rewarded with that saggy skin.
I won’t be privileged enough to see him go bald.
It will always be “in sickness” now.
The lights finally went down and I tried to forget.
But my body and mind do not ever let me.
How jealous I was of those elderly people crowded into a movie theater on an August Sunday afternoon.
The last week has been stressful. Unfortunately, my bloodwork shows that the chemotherapy regimen of Carboplatin and Gemzar is losing its effectiveness. It’s time to start looking at options for what to do next.
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