A Second Opinion

A lot's happened since I last wrote here. #1- I unofficially "fired" my oncologist. Not because she was a bad doctor- she just didn't offer me other options besides chemo. So I sought out another oncologist- based firstly on who would accept my shitty insurance- and found myself at the Swedish Cancer Institute with Dr. Rivkin.
I did some research, and was happy to find that not only was he one of the few doctors outside of my former clinic who would take my insurance- lucky for me, he was an ovarian cancer specialist. The topping on the cake: he set up the Marsha Rivkin Center for Ovarian Cancer Research in honor of his 1st wife who had died from OC. While learning the fate of his wife wasn't happy news, it was indicative of a personal commitment to the cause- because he knows first hand the emotional and physical pain involved with OC.

As soon as the new doc stepped in I knew that I should have done this a LONG time ago. He was pretty much awesome. He's definitely pushing 70, but he came in joking with a smile. Actually he reminds me a lot of my highschool best friend's father with his corny "dad" humor. The first thing he said was "Wow, you shouldn't be here- your such an old lady!" I could tell right away that he really cared- this was refreshing because my first impression of my former doc wasn't as good. While she asked me about my medical history she had her eyes on the chart- this guy was almost the complete opposite because he barely looked at the chart and I had to repeat myself a few times (old age?). Either way I felt really good about him from the start- even before he told me his plan.

I didn't have any imaging studies for him to refer to, but he said that's fine- he wanted to get a new PET scan since the last one was over 3 months ago. BAM! He got it ordered for the next week and my insurance actually approved it!

I told him about my financial worries and he told me that Swedish gives the most financial assistance/charity of any other clinic/hospital in Seattle. BAM! He pulled in a social worker and we set up a time to talk about my options.

Things were happening so fast that I didn't know what to do with myself!

So here's THE PLAN

1. PET scan: Gotta see if anything left. The doc and I are both pretty confident that the scans will be good
2. Radiation Therapy: Rationale: The exact radiation fields of my previous treatments were not in my medical chart. My recurrent tumor was in my right lower abdomen, which may not have been given a good dose of radiation. From what I remember, most of the beams were directed at the paraaortic nodes near my kidneys- where the cancer had spread. And of course I had request minimal radiation exposure to my uterus (I realize now that this decision may or may not have been a greatest, but who knows why my cancer came back) Anyways, the idea was that more radiation in this possibly untreated area might help. Dr. Rivkin also mentioned that clear cell type is also known to be more receptive to radiation.
3. Chemotherapy: I specifically stated that I did not want chemo and that was why I was here. Why? Because I don't want to make my chemo brain any worse than it is. (I'm a certified NP for god's sake! I need my brain!) Here's the docs response to that:
1. The chemotherapy-sensitivity test performed on my tumor? The one that I waited two months for the results?  He told me that the test is a bunch of bs and all results should be considered inconclusive (I'm looking into what lab was used and studies on the effectiveness of these tests- so far mixed reviews...) 
2. The Japanese have a different cycle for their chemo drugs than American's. I'm not sure what theirs is, but I did the American cycle (Paclitaxol/Carboplatin every 3 wks x 6 cycles). I don't know where he was going with this but I will research further...
3. Intraperitoneal Chemotherapy: Didn't I ask my other doctor why she didn't do this? Specifically during surgery when there was ready access to my abdominal fluids/contents? Well Dr. Rivkin wonders why she didn't do it too. He said that this could be an option but would require more surgery or other invasive procedures to allow the drug to access my abdominal fluids. Besides the possibilities of infection and complications from the procedure, the systemic side effects were mild, besides fatigue

1. According to a study published in the New England Journal of Medicine, patients who received part of their chemotherapy via an IP route had a median survival time of 16 months longer than women who received IV chemotherapy. (Question 8)
4. The PARP drug: wtf you say? This I'd never heard of either, and so the doc got out a little diagram with a bunch of numbers and letters and arrows connecting all of them (I know a lot about body processes and enzymes but definitely not enough in oncology). Everything he said went right over my head, but basically the idea was that Taxol & Carbo fight the cancer cell using one pathway, and this PARP drug used another pathway. So far studies have shown that it works mostly in cancers linked to the two BRCA mutations, but it is also being tested on other resistant and recurrent ovarian cancers. The drug he was considering was called olaparib and it was taken in pill form and had minimal side effects, including fatigue, nausea, & loss of appetite (been there before). BUT this would require a little more information to determine it's effectiveness
4. Genetic Testing: I told doc that I had already been to a counselor and she said that I was low risk. I had considered it anyways, but it was at least $700 that I didn't have. Well....Dr Rivkin thinks that it would be a good idea, and affordable if the new clinic could offer charity care. He strongly stressed that "a 28yr old should not have ovarian cancer," despite my concerns that I was only low-risk and that clear cell typically afflicted younger women. Either way, I wanted to look into it. If I happened to have either of the BRCA mutations- it would make treatment a whole lot easier, as a therapies could aim at a known target. Unfortunately, it will also scare the crap out of any woman in my family. So good and bad :(
5. Avastin: Yep it's on the table again and I'm not opposed to it. I expressed my concerns that it wasn't an option financially and my doctor said she didn't have a compelling indication to request financial assistance. Dr. Rivkin says: "Don't worry about it. We'll get you everything you need. Money is not an issue" If that's true then I'm all for it. 

That's a lot of information I just made you read, so if you got this far you are a true fan :) More to come!

Follow-up appointment

Last week I had my follow up appointment. This time I bombarded my doc with many many questions. 


Here's what I learned:

Apparently this tumor test isn't an exact measurement of the response and there is some variability of what will actually work and won't. However, as I said before, both my doc and I were expecting there to be very few, if any drugs that would "cure" my cancer. In any case, Two months later and the results of my tumor sensitivity were in. From what I had heard previously, there were no drugs that had worked, and the next step my doc had considered was Avastin. I learned later that the case was a little different: The lab divided the individual drug responses into 3 categories- good response, some response, and no response to treatment. As expected, there were no drugs with a good response and about 7 others with no response. To my surprise though, there were two that actually fell under the "some response" category- the Taxol/Carboplatin combo which I was previously on, and another combo of a drug named Gemcitabine in combo with Carboplatin.  


The side effect profile of Gemcitabine was nearly the same (fatigue, nausea, low-blood counts), and we discussed possibly going this route. Hair loss was probably my biggest concern at the time, and I was sure to bring this up first. My doc sent the nurse in for awhile so she could explain more about the side effects. The nurse said that of all her patients on this drug, very few lost their hair and most just had some thinning. This eased my concerns a little, but I still sat on that exam table conflicted about what to do with this info. The treatment timing was a little different- it would only be three cycles, or about 2 1/2 months. I would get a combo infusion of gemcitabine and carboplatin on week 1, and then return the next week for a solo infusion of just the gemcitabine.  Week 3 I would be receive no treatment. It didn't seem all that bad, and because I had tolerated chemo so well the first time I was expected to do just as well. Of course the big difference was that this was the 2nd time around and chemo had lost it's novelty when I knew what to expect. I still couldn't make up mind, especially when I had other questions:


What about the Avastin, the drug that she had previously recommended? 

A little aside about Avastin: It is a controversial drug that is currently FDA approved for several other cancers, including breast cancer. Interestingly enough, a few weeks before my appointment the FDA revoked their decision, claiming that the benefits were too small to outweigh the extreme cost of the drug and potential side effects. Avastin (Bevacizumab) works by inhibiting new blood vessel growth to tumors- preventing them from getting the nutrients they need to grow (large tumors grow a significant amount of blood vessels to feed them- something which often makes them difficult and dangerous to remove). Supposedly it's very well tolerated and often given in conjunction with chemo. However, one of it's most crucial side effects, although rare, is that it can create a hole in the gut- causing significant enough bleeding to cause death. It is also very very expensive- up to $100,000 a year- leading many if not most insurance companies hesitant to cover the costs. It is currently not approved for use for ovarian cancer, but is used off-label with mixed results. The FDA decision is interesting enough to check out- Although Avastin has been successful in reducing symptoms and curing some breast cancer patients, many people believe that the FDA reversed their decision based more on the costs than side effects- an unfortunate sign that the government can control how patients choose to spend their money on treatments.  This NY Times article I found explains the situation. 

In any case, my doc considered this drug before my appointment, but knew that my shitty insurance wouldn't cover it (she definitely confirmed that my insurance was indeed the shittiest). The drug company did, however, offer patient assistance for patients who demonstrated a strong argument for it's use. Unfortunately, right now with the tumor removed, I am not considered to have active cancer. Therefore she couldn't successfully advocate for financial assistance. So that option was out, because there is no way I could afford that drug when I can't even make a single payment on my school loan.


What about all the new treatments currently being investigated in clinical trials?


Not really an option. Again the problem comes up with my current circumstances. There are over 30 Stage II clinical trials on various treatments for ovarian cancer. There are quite a few specifically for patients with recurrences. Yet, again I do not qualify for them because I do not have active cancer. I essentially have to wait until I get worse to get better. How twisted is that?

So how do I decide?





So after being on the fence I finally said yes. The nurse set up an appointment and I was to start the next week. I left the appointment ready to plan the next few months to accommodate sitting in that infusion room and spending the next 2 days of feeling like crap. And thinking about the possibility of being bald, yet again. 

I went home and spent the week talking to my friends and family about my decision. And almost everyone I talked to about the situation didn't think it would be worth it. Weird, because so many people I have met in the past had such faith in science that they would have said chemo. But science had failed me the first time. 


After much more consideration I called the clinic today and cancelled my appointment. I don't think there was a single factor that influenced this decision- there was just too much mounting evidence against it for so little expected benefits. I just finished nursing school- did I need to make my chemo brain worse all for a treatment that may or may not work? Do I need to put my life on hold any more than it already is? Why should I make myself feel sick when I currently feel completely? I just have hope that there are other ways to fight this thing. 


I feel really good about my decision. Relieved is more like it. I'm planning on continuing to improve my nutrition and have been reading up on the influence of diet on cancer. And I'm going to start drinking Essaic tea. I figure that I might as well continue to feel good for now, and if the cancer returns then I can always try chemo then.

Treatment Plan

Well there is isn't one. I got a call from one of the nurses at the clinic and she said that the tumor had finally grown enough to do drug sensitivity: all of the drugs tested in that lab had a poor response. So the next step is another appointment with my doc in 2 weeks to discuss other options. She suggests Avastin, which is really really expensive ($80,000) and no insurance covers it. But, I may be able to get patient assistance. I'll find out more at my appointment. In the meantime I am looking into getting a 2nd opinion from other oncologists in the Seattle area. So far no other ones I've tried take my state insurance. I've also started fixing my diet and eating lots of foods rich in anti-oxidants. I'm also researching Essaic tea- something recommended by a fellow OC survivor at the cancer symposium I went to in October. I figure that while I'm not getting standard treatments I might as well fight the cancer with other routes. I'm also sticking to my 2 cups of green tea a day idea...

Any suggestions at this point would be greatly appreciated- there are a lot of alternative treatments out there and I don't even know where to begin. So far the chinese medicine and supplements didn't work out so well for me :(

Life.

When Life Gives You Lemons...

You say fuck the lemons and bail...

Oh yeah! I just returned from 8 days in Hawaii! I decided that I needed to go on a much needed vacation. Sun, surfing, snorkeling, friends... Exactly what I needed. Except now I am back. Dreary, raining, gloomy Seattle. But at least I got my boost of positive energy needed to start the year off right.

Here's to a good 2011! Of course things haven't been going as well as planned, but I guess that's my life. I'm so spontaneous that I constantly surprise myself :)