Yesterday was my first day volunteering at the wellness boutique. I was there for close to 4 hours answering the phone and making copies. The manager also set me up on the cash register and showed me how to do what will likely be my main responsibility, posting insurance payments. When new EOBs (explanation of benefit forms) come in, I have to look up the patient and add the payment to their account. There are many different insurance plans and levels of coverage so its a bit tricky. Yesterday I worked on a group of patients who had Medicare plus a secondary gap insurance. It was a busy first day, but fun. I’ll be going every Thursday morning. Yesterday I also happened to have a massage scheduled afterward so that was a nice treat.
Results from scan February 23, 2014
Dr. T called me Friday afternoon with the results from my PET scan. The scan showed progression in the liver, bones, and lymph nodes. The lesion in my liver increased from 6.6 to 7.7 cm, there are two cancerous lymph nodes in my abdomen, and a new bone lesion on the right side of my pelvic bone. None of these are huge changes, but they do mean that Gemzar isn’t working. It’s always tough to get this news, which is why I waited a few days to post about it.
Dr. T thought that my best treatment options were either Carboplatin chemo or Afinitor pills and felt that there was little information to suggest that one was better than the other. I decided to go with Afinitor since it addresses one of the mutations found during the Foundation Medicine testing. Afinitor is an mTOR inhibitor which affects the AKT1 mutation downstream somehow (not clear on the specifics). I feel better about choosing a drug that has some biologically plausible reason to work. Afinitor is a daily pill; no IVs needed. I’ll get monthly checkups with Dr. T while I’m on it and still get my Xgeva shots every 4 weeks. I go for a “teaching session” this week with the nurse practitioner to get any necessary prescriptions and learn about the side effects – the main one is mouth sores and associated weight loss – and then I’ll start the drug as soon as I get it from the pharmacy.
We also talked about whether I should get another liver biopsy. I’m not sure whether it was clear in my post about the Foundation Medicine DNA testing results, but they were only able to analyze the tissue from my mastectomy in 2009. I had 2 liver biopsies since I have been diagnosed with stage IV disease and those samples did not contain enough tissue to do DNA testing with. This was a huge disappointment for me. As I understand it, while a mutation that existed 4 years ago might still affect growth of my cancer now, it’s likely that several more mutations have occurred since then and are really fueling the growth of my cancer. So identifying RECENT mutations gives me the best chance of slowing or stopping cancer that is growing NOW.
All of that is to explain why I’m considering another liver biopsy, even though it’s an awful procedure. I realize that the doctor doing the biopsy can’t tell whether the sample is sufficient for DNA testing, but my question to Dr. T was – what’s to say I won’t have a third unsuccessful biopsy?
With that in mind, I asked about the possibility of a laparoscopic liver biopsy. I had a robotic laparoscopic surgery in 2012 and the hardest part was getting the IV started for the anesthesia. I know that there is a rather large chunk of tumor in my liver which has to contain enough cells for the DNA test. I’m planning on talking to a surgeon to find out if it’s even possible and whether there are additional risks besides anesthesia (like bleeding or spreading cancer cells) that would outweigh the benefit of being sure of getting a good sample.
Please let me know if any of this is confusing; you’re not likely to be the only one confused. Thanks to all of you for your continued support.
PET scan February 21, 2014
Had my PET scan yesterday. Wednesday night I had my typical post-chemo body aches and slept poorly because of it. Combine that with fasting until 1:30PM and it was a tough morning. There is nothing special to drink for a PET scan except water, so fasting and the injection of radioactive glucose (sugar) are the only tricky parts. Once I finished the scan, had something to eat and a couple of Advil, I felt much better. I’ll call today to check, but most likely I will get the results Monday.
I had to stay 5 feet away from the kids for the rest of the day to avoid exposing them to radiation, but they didn’t get too upset. I told Ryan we’d read our story like in school; he could sit in a chair a few feet away and I would hold up the pictures for him to see. Ryan has a little routine for night-time kisses – he likes to give me a kiss on each cheek and then a hug like he’s European. Haha. Last night we had to blow our kisses good night instead.
Famous in the Netherlands February 20, 2014
When I first started blogging, I looked for other bloggers with breast cancer. I wasn’t sure how to make sure my writing wasn’t too depressing. I found Diana from the Netherlands who blogs about her life with cancer and the amusing antics of her young son. Although we have never met, Diana is my virtual friend and has given me lots of encouragement and advice. She recently wrote about me on her blog (after you click on the link, scroll down for the English translation):
Chemo today February 19, 2014
Today I went solo for chemo. Just had treatment, no doctor’s appointment. I enjoyed a little bit of quiet.
I was a bit worried about my counts since I had trouble with the last cycle, but they were fine. I lost two pounds of water weight from the blood pressure pill my doctor put me on last week, but my blood pressure was about the same. Maybe it takes a little longer to start working.
I found out this week that I was approved for social security disability. I guess my persistence paid off! I should get my first check in August; they require you to be unable to work for 5 months before your first payment.
I am still working on paperwork for my volunteer position. Yesterday I spoke to the director of employee health about my tb test. She said that they agreed there was no reason for me to get the test; my immune system is compromised from chemo and the test would be inaccurate. A letter from Dr. T saying this will be sufficient. She did say that without the tb test I would be unable to volunteer in patient care areas, which I am not planning to do anyhow, and that I’d have to stay out of the main hospital while I am volunteering. She was worried I would miss the free lunch offered to volunteers in the hospital cafeteria. I told her I would happily bring my own lunch if it means moving forward without any more tests!
Young Survivors Support Group tonight February 17, 2014
Tonight I have my meeting with the Young Survivors Support Group. It’s really a great group of people at all stages of cancer and different cancer types, some working, some home with kids, some on disability. The common thread is that everyone is under 45. In case you know anyone who can benefit, here is our meeting schedule for 2014 (tonight’s meeting was rescheduled because our group leader was ill):
I had blood drawn for tumor markers last week. They are up from 88 to 110. Probably not a good sign, but I’ve got a PET scan scheduled for Thursday anyway, so we’ll see what that shows.
In the meantime, I’m doing a little research on the likely choices for my next treatment (just in case), Carboplatin and Afinitor. I heard from a friend who had a tough time with mouth sores on Afinitor that she thought her situation was unusual and knew several other people who had little trouble with it.
I had quite a bit of liver pain over the weekend so I had to take a few pain pills. Ugh. Feeling better today though.
Update on yesterday’s doctor visit February 13, 2014
Yesterday’s doctors appointment went well. The genetic test results finally came in! So that was pretty exciting. They did find two mutations for which there are treatments, p53 and AKT1. The results from the genetic analysis were sent to a committee of oncologists at the Cancer Institute of NJ who made recommendations on treatments, both currently FDA approved and experimental. The approved treatments they recommended were Afinitor and Carboplatin, both of which were on my list of possible future drugs. Afinitor is known to cause mouth sores in more than 60% of people who take it and the main side effect for Carboplatin is low blood counts. The committee also recommended about 4 trials that are ongoing in the NJ area that might be good for me. The trials are all phase I, which means the treatments haven’t been proven to work, but they do target the specific mutations that I have which is a plus. I need to thoroughly read the report to get more details. One disappointment was that they were able to use the sample from my original mastectomy in 2009, but not EITHER of my liver biopsies (2012 &2013). The liver biopsies did not contain enough cancerous tissue to do this kind of highly specialized analysis. Dr H from CINJ told me that the mutations from the 2009 sample would still be present in the cancer cells growing in my body now, but it is likely that there are additional mutations (that have occurred since 2009). There is the option of doing another biopsy in the future, but Dr. T says we will need to consider the risks vs benefits.
For the moment I’m going to continue with Gemzar. I’ll be getting a PET scan next week to see how I’m doing. I also had a tumor marker drawn which should be available later this week. My counts were good yesterday, so I had my usual chemo as well as my Xgeva shot. I was pretty tired last night and went to bed early, but had to take a pain pill first because of body aches. My blood pressure has been consistently high over the last few months, so Dr. T gave me a water pill (HCTZ).
We’re still dealing with the snowpocalypse here in NJ….
First week of retirement February 10, 2014
I suppose I had mother nature to thank this week for plunging me headfirst into my “new” role of stay-at-home mom. With two snowstorms the boys had very little school last week, so it wasn’t exactly a slow transition. I had been nervous about keeping them busy during the summer, but this was a sneak preview for me. Considering I hadn’t planned any activities and we couldn’t play outside, go anywhere, or get together with other kids from the neighborhood, I think we did pretty well. We finished most of the valentine cards for school and also made homemade ice cream using snow and salt. If you’re interested, the recipe is here, but you’ll need more snow and salt than described.
I did do more cooking that I’ve been able to while I was working. Of course as I described yesterday, most of my “free time” was spent doing paperwork. For those of you who might be worried for me, I do have three outings planned with friends this month and will also likely be starting my volunteer position in late Feb or early March.
Paperwork February 9, 2014
So I mentioned in my last post that I had filled out the Social Security Disability application. The online application took about 2 hours to complete, with lots of questions about my diagnosis and the various tests and treatments I’ve had. Then a few days later I received two packets of paperwork to complete – a total of about 25 pages. I had to think that the real purpose is to dissuade anyone who doesn’t REALLY need it. One packet is all about my ability to do various physical and mental tasks. The other is about the jobs I’ve had over the past 15 years, which means all the way back to 1999. For the most recent 5 jobs they wanted lots of details about the hours, salary and things you did. The last few on the list were tough; those were jobs I had in college or grad school. All of them paid little (or were sometimes volunteer) and I often had two at a time. Figuring out the timeline was tricky. Luckily my computer expert husband had backed up my files from grad school and I was able to find a resume I wrote about 12 years ago that had most of the details. Yikes! I’d also like to point out the irony of the fact that the first packet asked questions about memory and concentration, then wanted you to recall details of things that happened 15 years ago…
The other paperwork I’ve been working on this week has been for my pension- direct deposit and tax witholdings. I’ve also had a running list of daily calls I have to make on insurance issues, test results, appointments, etc. Not working sure it hard work so far. 😉
And I’d just like to clarify that the boys were drinking HERBAL TEA, not wine from those sake cups. Haha.