"When an affliction happens to you, you either let it defeat you, or you defeat it.." - Rosalind Russell

March 27, 2011

Angiogenesis- Avastin

I have no idea who this guy is or even what show this clip was from, but he does a good job hitting the key points. Beware... he talks really really sloowwwwwwwww.
http://www.hulu.com/watch/219298/tedtalks-william-li-can-we-eat-to-starve-cancer

Menopause is a bitch

Lots more to talk about:

First and foremost = PET Scan = good!!! No sign of cancer anywhere

Now for the rest:

  1. Radiation: No go. The radiation oncologist said there was no reason to have it now because I don't have active cancer. It will always be an option to do it later however
  2. Chemo. Still not doing it. No poison today thank you.
  3. Genetic Testing: This one was interesting. While I was again told that there is maybe a 5% chance of having the BRCA mutation, there is another mutation that is linked to clear cell- Lynch Syndrome. It is the most common heredity cause of colon cancer, and is linked to ovarian, kidney, stomach,  intestinal and other cancers. I want to research this condition more, but it's definitely not something I wanted to hear. He said that he was going to possibly look into getting me tested, but that included a lot of paperwork as usual, considering it's not covered under insurance. And if I have that mutation- yearly colonoscopies. Yep. It seems things just keep getting better and better :( 
  4. Avastin: I just got a letter from the insurance company saying that I wasn't approved because according to the FDA, Avastin has yet to be proven to be beneficial in the case of ovarian cancer. This was expected however, and so I sent in my appeal to the company itself for approval. 
  5. CA-125. I had a blood draw at my last appointment but I haven't received the results. I don't think my numbers really matter at this point considering they were stable despite my last tumor. I guess it would matter if they were 400 again, but I expect it to be under 15 as usual. 
  6. PET scan: every 3 months. I'm curious if insurance will pay for it, but either way I expect to get charity care (application in process)
  7. Receptor testing. This was an important one. My doc order tests using a sample from the tumor that was removed: ERPr (tests if my cancer grows in response to estrogen or progesterone) and HER2/neu (a protein that cancers make too much of). And what was the result? My tumor is 50% positive, meaning that it IS affected by and grows in response to estrogen (it wasn't affect by progesterone however). WOW GOOD TO KNOW THIS considering that I have been taking a large dose of estrogen for the past 2 years. Way to go doc for never testing for this before. Was this the reason the tumor came back? Who knows, but it definitely didn't help. Unfortunately we didn't have the results of the HER2/neu test, because the clinic missed that order and didn't test the tumor for that receptor. WTF SCCA? Get it together!
  8. So what is the significance of the tumor being estrogen sensitive? It completely redirects my treatment plan...
    1.  Estrogen: I have to stop taking it. When I heard this I got a little teary. Hot flashes are awful! Now I am officially menopausal and all you older readers know what this means. Mood swings and hot flashes where you could sit in a freezer and still have no relief! And all the other lovely vaginal symptoms and bone loss which someone my age should not have deal with. This was pretty depressing news, considering I hadn't dealt with these symptoms since I started taking 2mg of estrogen every day. 
    2. Bone Loss/Osteoporosis: Now I have to take more Vitamin D and a drug called a biphosphonate. These drugs stop the breakdown of bone that occurs with menopause. I will probably start these after the next appointment. 
    3. Mammogram: as in I need to get one if my cancer is estrogen sensitive. BUT this is a pain- the receptionist spent 15 minutes with me just trying to find a place that takes my insurance. And then when I called them they told me that I had to sign a waiver that I will pay independently because my insurance won't cover it. Despite having a cancer related to breast cancer, you can't be 30 and get one. WTF? Why does everything have to be such a process? Now I have to go back to my doctor and figure out how to work around this.
    4. IUD: I had it inserted because I needed the progesterone to counteract the risk of uterine and breast cancer that is increased with unopposed estrogen. Luckily this is a pretty quick and painless procedure
    5. SERMs- Selective Estrogen Receptor Modulators- MORE TO COME....

February 23, 2011

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!

January 28, 2011

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.