It seems that last week I caught something that was going around. I was really sleepy Wednesday and Friday, and on Friday I got chills so I call my doctor. She had me come in just to check my vitals and run blood work. I did have a fever by the time I got there, but my white blood cell count was fine and I was not anemic. Having both a fever and low white blood cell count can be very dangerous; it means a neutropenic fever where your body can’t fight the infection on its own and requires hospitalization and IV antibiotics, so I was happy to hear that I didn’t have that problem. She also ran a metabolic panel including liver and kidney function tests and did some blood cultures to check for infection. This was late Friday afternoon, so I haven’t got the results of those yet. I brought my hospital bag just in case, but I was able to go home Friday with antibiotics and instructions to get lots of rest and have some soup. By Saturday night I felt quite a bit better and today I just have a lingering cough.
Appointment with surgeon March 4, 2014
Friday I had an appointment with Dr. S, a surgical oncologist, to talk about getting a laparoscopic liver biopsy. I was surprised to find that he was very kind – sort of the opposite personality you expect from a surgeon. I had to start from the beginning and explain the whole story. I’m so used to it by now that I forget how crazy it is. I started to cry and he almost did too. He spent a lot of time with me and showed me the PET scan, explaining the different areas that were problematic. He said the cancer in my liver is about the size of a tennis ball. He did an exam and seemed surprised that I didn’t have pain when he pressed on my liver. He also felt around for lymph nodes that might be easily biopsied, but didn’t find any.
We talked about several different possibilities. He said that he could do the laparoscopic biopsy in two different ways, either 1) removing a single large piece of tumor or 2) using the same CORE biopsy needle as my previous liver biopsies to remove 7 or 8 smaller pieces of tumor. He thought that as long as the sample would work for the DNA testing, the second option was less likely to cause bleeding problems and would require a shorter hospital stay. Even though he’d use the same needle to remove the samples, he would have the camera so that he could see the tumor and would be able to take more samples since I would not be awake and feeling the pain.
I also asked him about surgical treatments to remove the entire tumor like resection and RFA (radio frequency ablation). He said that the tumor was rather large for these treatments and that he would only recommend taking such a risk if I did not have cancer in other parts of my body. He did say that if the cancer in my bones and lymph nodes went away (say from another treatment like chemo or Afinitor) he would be happy to do the RFA in the future.
Overall the appointment went well. We talked about doing option #2 above – robotic laparoscopic liver biopsy using the CORE needle on Monday, March 10th. The surgery would be same day or might possibly require a one night stay in the hospital (don’t feel bad for me, the oncology wing is deluxe- they have showers and DVD players!!) Before I left he gave me a hug and a kiss on the check.
Four different people recommended Dr. S, but I’ll see what Dr. T has to say about him on my appointment on Wednesday. I also need to check with her about whether Afinitor will interfere at all with surgery and whether she wants me to wait to start it until afterward.
Teaching session March 3, 2014
Earlier this week I had my Afinitor teaching session. As I expected, there was a long list of potential side effects. The most common side effects are mouth sores and the accompany loss of appetite, nausea, etc. The mouth sores are a systemic problem, not a contact issue, so the crazy ideas I saw online about putting the pill in a marshmallow apparently won’t help. (Don’t trust everything you read on the internet!) She did tell me to call right away so they can prescribe special mouth washes to make the sores heal faster. The serious side effects I have to watch out for are kidney infections and liver problems. My doctor’s office will be doing regular blood tests (more often when I first get started) to check for the kidney and liver issues. The nurse practitioner said that I was an ideal patient for this drug because other than cancer, I have few health problems.
Afinitor is available in 4 different doses; I’ll be starting with the highest dose, but she told me to keep in mind that should the side effects be too difficult to manage they could (and often do) lower the dosage for this drug. I expect it will be a bit like when I started on Xeloda – it took a few weeks to get the appropriate dose figured out. I’ll start with a daily dose of 10mg.
The drug is very expensive so we are waiting to hear whether I’ll be able to get it at my usual pharmacy or if it will go through a specialty pharmacy and be delivered to Dr. T’s office. Because many patients have to adjust their dosage, the pharmaceutical company is giving me a two week free sample, which will arrive at my house via UPS tomorrow. The pharmaceutical company also has a program where the maximum out of pocket for patients after the insurance pays for the drug is $25 a month, so it will not be expensive for me, just for my insurance company.
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.
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):
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….
More on the liver biopsy December 18, 2013
My post Monday on the liver biopsy was a quick one because I had an IV in my right elbow making it hard to type. Overall this biopsy was less painful than the last one, but it was equally traumatic. I was fairly calm Monday morning, but I took 2 Ativan anyway.
I had a different doctor for this procedure. His medical skills were very good, but his people skills were bad. They did a CT to find the biopsy location and marked it in ink. Then he numbed my skin. He had been explaining each step as he went along, so imagine my surprise when he suddenly he jabbed me with the big needle right into my liver with no warning. Holy cow! I was so shocked I just burst into tears. Luckily there was an awesome nurse who immediately gave me something in my IV to help me relax. I asked the Dr why he did that and he said people tense up if he warns them first. So then I asked whether anyone ever threatened to punch him in the face. 😉 OK, so that wasn’t nice, but he did have it coming.
He did get it in the right spot and got 4 good samples. They did 2 chest xrays just to make sure my lung didn’t get pricked and I had to wait in recovery for a few hours. I didn’t end up needing any pain medication. I got home around 3pm and took a nice long nap.
I’m in the process of figuring out how to get the sample sent to the testing company.
Options for hair loss November 27, 2013
My sister-in-law recently asked me for information on hair loss for a friend of hers that was diagnosed with cancer. I thought this information might be useful to others too. There are of course many options, but I’m sharing a few of the simplest and inexpensive ones.
These are two companies that make easy and comfortable chemo caps. No fancy tying required. Both companies sell from their own website and Amazon.com.
Turban Plus Abbey Caps
In terms of scarves, the best are 36″ square scarves of a soft material. You can get these at any department store (or convince your sister to bring you one from Paris like I did 😉 ). This link has some info on how to tie them: Scarf Tying Guide
Wigs can be a great option too and are often covered by insurance if a doctor writes a prescription for a “cranial prosthesis”. I think the baseball cap/wig combo option is nice and is available in different lengths and hair colors:
Baseball cap with attached wig
Please share this with anyone who might need it.
Happy Thanksgiving everyone!
Talking with kids about cancer November 26, 2013
Living Beyond Breast Cancer is an organization that provides information and resources to women with breast cancer. One of its features is a monthly “ask the expert” column. November’s topic was talking with children about cancer. I submitted questions to the expert and my questions were chosen to be answered. You can check it out here: November 2013 Ask the Expert: Talking With Children About Breast Cancer.