Marisa says: We have gotten to know some amazing people on this journey and from time to time, hopefully, we can convince some of them to share their own stories with you. With that, I’d like to bring you our very first guest post. For those on the same road, it may provide you with a different perspective on treatment or dealing with PC. If you are interested in sharing your story, send me an e-mail. And of course, I know you all will share the love.
Erin says: So apparently Marisa and Scott’s blog is so popular that they invite guest bloggers. I think I am the first so I’ll give you a short 411. My name is Erin Buell. I’m 36 and in June, 2010, I was diagnosed with pancreatic cancer. It was a shock to me and my family as there isn’t a history of pancreatic cancer in my family and I don’t have any of the risk factors. But, 8 months later I’m still fighting. Like many people who have commented on this blog, I found Scott and Marisa while looking for others who were going through what I was going through. Sadly, PC patients don’t have support groups. We’re too busy fighting cancer and spending our time with friends and family. And the sad truth is there isn’t enough people who have survived that long to even have a support group. Scott and I are probably one of the first people in the United States to get FOLFIRINOX treatment for pancreatic cancer. We both got this treatment based on a compelling French study presented at the ACS conference in July, 2010. I have the slides if you’re interested and my email address will be at the bottom in case anyone wants to contact me.
Marisa and Scott have asked me to comment on my experience with FOLFIRINOX and I’m happy to oblige. It is hard to condense what I’ve gone through in the past 8 months into one blog post so I’m sorry if it seems convoluted or scattered.
Short info: So days 1-3 are a loss and I just lay in bed until pump disconnect. Days 4-7 I get a neupogen shot to boost white blood cell count. I highly recommend in the belly if you have any sort of belly fat because the back of the arm burns. Days 8-14 I just recover and return to normal. Day 14 I get a blood test to see if I can have chemo again.
Side effects: So, for me, the worst side effect has been nausea. I am always pumped full of anti-nausea meds and for the 3 days of treatment I sleep and throw up. About round 4, I started to experience anticipatory nausea which meant that I was getting sick just walking into chemo. Aaah…good times. But nausea isn’t cumulative so it goes away. In November, I experienced neuropathy that has never left. It is in my fingers and feet. Luckily, I haven’t had it in my mouth or experienced the burning sensation that causes many patients to stop chemo. I have lost my hair but in patches so I sort of just look like a deranged person. And some hair grew back but it’s all come in white so now I get asked if my mom is my sister. AWESOME. Fatigue. This is real and the difference between what I can do day 7 versus 14 is quite substantial. I don’t think I could do a job or run a household on this drug. I just try to do what I can and just understand that I will be less tired later. I do experience cold sensitivity but it fades for me as chemo gets further and further. However, I live in California and so I don’t know snow cold. That being said…in December and January I was extraordinarily unhappy with the weather and its effect on my appendages. About 3 weeks ago I went to Hawaii and my neuropathy seemed better and I had no cold sensitivity issues. I recommend all recovery occur in tropical climates😉
Other things: So I wanted to mention 3 other things that are not side effects that are listed in the FOLFIRINOX materials but are things that have happened to me and I wish I knew. First, I have had to delay treatment due to low platelet counts. Sometimes these breaks have been for a month. The first time this happened I totally freaked out because I thought it meant that the cancer would immediately grow back. Turns out..not true. The chemotherapy is still there and it is active so if you want to do 3 weeks instead of 2..I recommend it. It just makes chemo nicer and it gives you something to look forward to. In the infusion center, I’m the first one there and the last to leave and then I take it home. Do yourself a favor and after 2-3 treatments take an extra week break. Both Scott and I traveled during treatment. I went to two weddings and Hawaii. It was worth it. Second, about round 8 every time I started to travel I got sick. So, if you travel I recommend brining Tylenol, a thermometer and antibiotics. When I was in Hawaii, I got pneumonia. If I hadn’t had the Levaquin with me I would have had to brave the Waikiki urgent care and let’s be clear, I would have gotten something else. Instead, I took the antibiotics and felt better within 48 hours; no trip to the hospital required. And finally, this side effect is a little hard to explain but around round 4, I felt helpless and maybe depressed. I think the first round you’re excited for the treatment. The second round there is adjustment to meds, your hair falls out. And then in the third cycle everything sort of settles and you realize what you’re in for. So, I know that between the third and fourth round I had my first mental chemo meltdown. You think…this is it? And typically you haven’t had your scans yet. And for me, my CA 19-9 numbers didn’t go down until round 3 so I was feeling more demoralized because I felt that I was 36, unemployed, living with my parents, dying, and chemo wasn’t even working. Luckily, this was the round though that I went to see my friends from law school and I came back pumped and renewed because for 72 hours the conversation was not about me or cancer.
End Result: So even though I started FOLFIRINOX on July 20, 2010 (my 36th birthday), I had my 13th (and final round) on March 1, 2011. FOLFIRINOX has sort of worked for me. I always hoped that the tumor would shrink 40% and I could get that Whipple surgery but it turns out that once you have mets in the liver, doctors don’t think you should have surgery. While the tumor in my pancreas hasn’t shrunk it is stable and has not grown. In addition, the tumor in my liver was not detectable in the last scan and the tumors in my lungs are also appear stable. I was taking drugs stronger than morphine prior to chemo and by round 4, all pain pills were put aside. My CA 19-9 numbers decreased into double digits at the end of December. In January, however, they started to go up again and even though I still am not in pain, it is clear that the chemo has probably stopped being as effective as it could be. In addition, over the past two months my pancreas is not as effective as it used to be and I’m now diabetic.
What next: So…I consulted with oncologist and got a second opinion as well and was presented with three options. First, do nothing and just wait until the pain returns or a scan shows metastasis. Second, do another chemotherapy. Third, try radiation therapy. So…it appears that Scott and I are again on similar paths. I am meeting with radiation oncologists over the next couple of weeks to see if a plan can be developed to treat my cancer with radiation. I think it slightly different from Scott’s plan which is to use radiation to help with pain although that is also the game plan. I’m not sure how the treatment is different as we will both be sick and nauseous again in the coming weeks.
I want to thank Marisa and Scott for letting me post on their blog. Please feel free to send me an email with any follow up questions. My email address is firstname.lastname@example.org.