1 year and cancer free!

It's been a year this month and my PET a few weeks ago was negative! I'm feeling good and had an incredible summer which has boosted my mood (hopefully it lasts into the gloomy Seattle winter). I feel generally stress free and worry free on the medical side. All is good.

Therefore, I am discontinuing this blog unless there are big changes. It's become a burden and I have completely lost interested. Sorry to all my followers- hopefully anything I do post will be 6 months or a year from now cancer free!

Thanks for reading!

Amber

Tattoos

Highway to remission

My summer on the physical/medical front

I went to see Dr. Rivkin and get my 4th Avastin treatment last Thursday. As usual, the "fast track" program (if you see your doctor right before your appointment, you are guaranteed no wait for your treatment), was not fast- my appointment for 30 minutes of infusion took over 3 hours. I can't imagine how people do this with 9-5p jobs. Dr. Rivkin was running late as usual, but I arrived early enough that we finished in time for chemo. But I still waited 30 minutes to get in, 20 minutes for the nurse to get the IV in, and over an hour for the pharmacy to get me the drug. WTF? This has been the 2nd time that the nurses have had a really hard time starting an IV. I guess I'm always dehydrated when I go in. Weird because when I am at work I carry my water bottle everywhere and am always drinking out of it. The pharmacy is probably the biggest problem- I mean, what do they do in there? Every time I go to pick up a med they seem to just be leaning on a counter. Does it really take an hour to mix a drug?

Enough ranting, now for what else is going on:

1. I am having bladder problems yet again. Urgency, frequency, some dribbling. It's been pretty annoying, but inconsistent. This has been going on for over a month, yet Dr. Rivkin can't find anything wrong. I has told him about it and that's why he rushed to order my PET scan. He kept joking about how I was getting older and needed diapers and this really pissed me off. I am 30 and should not be having bladder problems. Especially since this was one of the symptoms of my cancer. But the PET SCAN SHOWED NO EVIDENCE OF TUMOR, which was a relief. He then ordered a culture of my urine to see if I had an infection, but that was negative. So as of now, he says that my symptoms may be a result of damage and fibrosis from radiation. I am still skeptical because I thought that this area was irradiated as much as everything else. Plus I thought that these changes would occur much later, rather than after only 2 years. But he explained that symptoms can occur anytime following treatment. I already have constipation most days, which I never had problems with before. Anyways, he brushed the issue off as no big deal, which was frustrating. So my next plan is to talk to my primary care doctor and get a referral to a urologist, because I think that's the proper route for my insurance to pay for it. It's cancer-related though, so I don't know why Swedish can't handle it. Another insurance issue, go figure
2. Avastin side-effects. 
1. My urinalysis showed a small amount (1+) proteinurea, or protein in my urine. Doc said that I was dehydrated and needed to drink more water. He will continue to monitor it with pre-treatment pee tests, but presently it is low-grade and may be resolved with hydration. Here is what the Avastin website says about proteinurea: 
2. Proteinuria/nephrotic syndrome (Warnings and Precautions)
   • The incidence and severity of proteinuria are increased in patients receiving Avastin compared to controls
   • Grade 3 and 4 proteinuria ranged from 0.7% to 7.4% across clinical trials
     • The overall incidence of proteinuria (all grades) was only adequately assessed in AVOREN, in which the incidence was 20%
     • In AVOREN, median onset of proteinuria was 5.6 months (range 15 days to 37 months) and median time to resolution was 6.1 months (95% CI, 2.8 months–11.3 months). Proteinuria did not resolve in 40% of patients after median follow-up of 11.2 months and required permanent discontinuation of Avastin in 30% of the patients who developed proteinuria
   • Nephrotic syndrome occurred in <1% of patients receiving Avastin in clinical trials, in some instances with fatal outcome
   • In a published case series, kidney biopsy of 6 patients with proteinuria showed findings consistent with thrombotic microangiopathy
   • Monitor proteinuria by dipstick urine analysis for the development or worsening of proteinuria with serial urinalyses during Avastin therapy. Patients with 2+ or greater urine dipstick reading should undergo further assessment, eg, a 24-hour urine collection
   • Suspend Avastin administration for ≥2 grams of proteinuria/24 hours and resume when proteinuria is <2 g/24 hours
   • Discontinue Avastin in patients with nephrotic syndrome. The safety of continued Avastin treatment in patients with moderate to severe proteinuria is unknown
3. Hypertension: My blood pressure readings are pretty inconsistent. At my appointment I had a reading of 139/78- my highest yet. Yet, before my infusion it was back down to 110/68. I've never experienced "white coat" syndrome- where readings are higher than normal when patients are in the exam room. I'm going to dig out my blood pressure cuff and start taking it myself. 
4. Slow healing: This month I went camping 3 weekends in a row and developed "camping feet" (or dirty hippy feet) from going barefoot, hiking, mosquito bites, and just being around scratchy plants and rocks. I now have a lot of lovely cuts, bruises and callouses on most of my lower extremities (Mark you would run from me if you saw them). Anyways, I had a really really itchy mosquito bite on my ankle, which my big toe scratched raw while I was sleeping. This spot became an ugly blue-purple-red splotchy ulcer (yet painless) which is still healing. It's the kind of cut you would expect from a patient with diabetes or arterial insufficiency (lack of blood flow to bring healing white blood cells and oxygen necessary to make new cells- exactly what Avastinbandaid and my little 5 & 6yr old noticed and became obsessed with my boo-boo. Every one of my other cuts are also healing pretty slowly, so I have awesomely hideous camping feet. 
3. Vision: I've had no more problems from the Tamoxifen. Only those two incidences of blurriness months ago. BUT, after developing a lingering summer cold with 2 weeks of laryngitis, I also had conjunctivitis (pink-eye). I have a couple days of antibiotics (prescribed myself) left and then I can take off my awful glasses and wear contacts again
4. Sweet tooth: It's back, but now I believe it's completely unrelated. I read dozens of posts from other survivors with taste changes after chemotherapy. Tons of people who went from salt to sweet like myself. They never tell you these things in the clinic- thank god for the Internet and great network of survivor blogs! Unfortunately my teeth are taking a toll (see previous article), and I am planning on visiting an urgent care dental clinic in the next few days to get a filling for a previous cavity and relieve a toothache :(

Don't all these make me the most-attractive person ever? I do have a new sexy, raspy voice! Good thing I'm so awesome otherwise, so I can get away with having so many fun physical problems :)

That's it for this long post- I'll post an update on what's going on in the rest of my life soon!

The Effects Of Chemotherapy On Teeth | LIVESTRONG.COM

http://www.livestrong.com/article/31610-effects-chemotherapy-teeth/

Article: Scientists image beginning stages of ovarian cancer growth with time-lapse technique

ScienceDaily (2011-06-14) -- Scientists have created a laboratory model using time-lapse video microscopic technology that allows observation of early stages of ovarian cancer metastasis.

PET, Dr. Appointment and 2nd Avastin Tx

I had another PET scan today- the second sunny Friday that I spent in the clinic. It took about 2 hours and was fine except yet again I was extremely hungry. I was actually bad this time and had two Chex squares in the car on the way there. And then I licked the salt off some more :) When I got to the clinic I started to get really worried that I screwed up the test, which would be really unfortunately considering I fasted 12 hrs for 2 damn pieces of Chex Mix (but very satisfying). They check your blood sugar before injecting the solution and fortunately I was fine. I then sat in the office room with the lights out and instructions to relax and NOT use my cell phone. I was able to listen to a little Pandora though- (FYI Ratatat Radio has some good pre-PET tunes). After that I went through the scanner for about 30 minutes with my arms raised above my head. My arms fell asleep and of course  everything on my face started getting extremely itchy. Frustrating...

After that I got home and ate tons of carbs and sugar. One day of PET prep is hell. We had a staff meeting with pizza and I couldn't eat the crust. I sat and listened and secretly picked off all the cheese and ate it with no one noticing.

Last Friday (sunny day #1), I had my second Avastin treatment and an appointment with Dr. Rivkin. Yet again I was reminded of his awesomeness. When I walked in the first thing he asked me was about my job search. I told him that I still had no luck and that I was worried about losing my knowledge. I also mentioned that I was looking to shadow a doctor or another NP. As I was finishing that sentence he got on the phone and starting calling some NP colleagues! He tracked down one NP who worked in oncology who would be willing to let me shadow. I also get to shadow the NP in his clinic once a week! I still have to finalize details, but I'm really excited! I would absolutely love to work in oncology, and I think I would be pretty good at it :)

As far as the rest of the appointment, I gave him my "list of questions" and he went answered each one in order. ( I recommend that every patient with a chronic illness keep a list- it ensures that you get all of your questions answered, helps the provider, and improves the efficiency and flow of the appointment.)
1.) Blurry vision: He said that my dose of Tamoxifen was pretty low to have this symptom, but he agreed with my to make an appointment with an opthalmologist to get a baseline. Unfortunately I have to go through my primary care provider who I haven't seen in over a year. I now made an appointment to see her next week
2.) Avastin first treatment: I told him it went fine- no side effects. I mentioned how my blood pressure had gone up on too occasions, but when the nurse checked it in the office it was back to its low value. No worries there
3.) CT Scan: Normal. Nothing at all. However, I was due for the PET since it had been over 3 months. I couldn't schedule it at the time because of the lengthy approval process. Getting it within 1 week was surprising because it usually takes around 3. Even though I have financial assistance through Swedish, everything still has to go through my insurance company. However they approved it again :)
4.) Avastin treatments: Scheduled for every 3 weeks. Now they should only be a 30 second infusion, although it always takes an extra hour. Good thing I don't have a day job! I don't know what is going on in the pharmacy but they seem to be the cause of the wait. Maybe it actually takes 30 minutes to mix Avastin?
5.) Weight. 121. I guess I'll be wearing a lot of skirts, because that's the only clothing that seems to fit the best. Unfortunately I live in Seattle and it's Junuary so I'm gonna be cold. But I guess other clothes don't matter that much, considering I wear athletic pants and the same T-shirt 4 times a week.

That's all for now- tomorrow I'm getting up at 7am to strip down to my birthday suit, paint myself, and parade the streets of Fremont (which is conveniently my new neighborhood). Yes, it's time to celebrate the Summer Solstice again! And the weather forecast: 62 deg with a 50% chance of rain. I think I may warm up with a few mimosas before I start the ride :)

First week of Avastin

I feel fine, and been monitoring for anything unusual. Last week i went in to talk to the social worker and happened to have my weight and blood pressure checked- I was 121lbs and my BP was 128/92! My blood pressure had gone up 20 points on both parts! I didn't believe the nurse's reading, and so I ran around to varying offices in search of an automated machine. After struggling for 5 minutes just to put the velcro cuff on my arm (I could have done it manually twice as fast) I got a new reading- 120/82. Hmm.. that's much more normal but still 2x as high. I guess Avastin does indeed cause your pressure to go up.

Other than my now normal blood pressure, I have no other issues. I guess if you don't count the fact that I only have 2 or 3 pairs of pants that really fit. Darn! I guess now I have an excuse to go shopping ;)

I haven't yet met with Dr. Rivkin to discuss the Avastin treatments, or to even officially go over the CT scan results. I'm going to try to go in tomorrow, but if not I can always see him next week. This weekend kicks off festival season :)

1st Avastin treatment

*** I posted two times today so read the post below first.***

I'm actually sitting in the waiting room for my first treatment. It's sunny and I'm frustrated because I was just starting my garden when I had to go here. Now I've been waiting for 1/2 hour and then I'm expecting treatment to be over an hour. I'm feeling pretty frustrated right now

I'm listening to some of the patients talking about their cancer experience and it's pretty sad. One guy has had chemo for 13 years. I'm not sure what cancer he has, but it keeps coming back. He is having a really hard time talking and is speaking really slow. He explained that he has a really hard time stringing words together and could even explain where he lived. What kind of quality of life can you have if you cant communicate or think straight? This is just great example of why I'm not doing the traditional chemotherapy ever again...

...I just started the infusion and she answered a lot of questions I'm been thinking about for awhile. But first I must say that Swedish offers a much better lunch than SCCA! They have a veggie sandwich and healthy food such as fruit. Such a change from the crap I used to eat- cheesitz and Oreos. They actually recognize the importance of good nutrition when you are battling cancer.

I asked the nurse what side effects she encountered with patients on Avastin. She said a lot of patients are on Avastin and it's pretty well tolerated. Most commonly she sees a raise in blood pressure and fatigue. My blood pressure is 106/64 (normal is around 120/80), so I don't think I don't think that will be an issue. Hopefully now I won't feel like I'm about to faint all the time. Because the drug prevents blood vessels from forming, they check your platelet count before each infusion to check the body's ability to clot. Therefore, there is the potential for bleeding, and so some patients may have occasional blood noses. She said she has only had two patients have the most serious side effect-abdominal bleeding. These are two out of hundreds on Avastin, and I'm guessing that they weren't that healthy to begin with. I'm not worried about anything right now except the fatigue, although that has been much much better

I have to have the chemo every two weeks until infinity. Actually I have no idea when I have to stop because it is only maintenance therapy. I guess I'll just do it as long as I can tolerate it. The infusion is 90 min today, and then 60 min next time, and then 30 min every time after that. It seems quick- it's Friday though and I definitely need to reschedule my next one earlier in the week.

I also learned Dr. Rivkin is in his 70's and will probably never retire. Apparently, at the time I set up my first appointment he was trying to cut down his patient load- making it surprising that he took me on. I'm guessing it's because my cancer is a little rarer, but mostly I'm sure it's because of my age. He is almost enthusiastic about my case which is a really really good.

He doesn't do surgery- he refers his patients to one of the ovarian cancer surgery specialists. I didn't know there was a specialist for my cancer, but I love the idea. Hopefully this one won't take out any extra body parts.

Scans

I spent my day off yesterday in the clinic- getting scanned. First I had a CT scan, which includes of course drinking a quart of chalky berry-flavored contrast. It's not really that bad, but I have an hour to drink it. I finished it in 2 minutes and just sat there bored. The scan itself wasn't bad, I've done them so many times. I won't know the results until Monday, or when I schedule my next appointment. I'm not really worried though- I just had a PET and that was fine

Scan number two was a mammogram. This was new to me. First of all, everyone kept reminding me of the question "why are you here?" I'm under 30, with a weird cancer that isn't known to be linked to breast cancer. Plus, since Basic Health won't cover it, it would cost $700. I just figured, why not? it's on Swedish's bill anyways. Turns out my nurse was an ovarian cancer survivor too. She told me that she asked to scan me after reading my chart. We chatted about my experience and she encouraged me to go to one of the support groups, as well as an organization that promotes physical activity by planning hiking trips and offering classes in swimming, yoga, etc. She joined and now races dragon boats. Pretty cool. She also said that she still goes to the support groups and that there are a few younger women, and some others with clear cell. However, she said she always felt a little bad because she was a 8 year survivor and some of the women in the group had active cancer and were late stage 4. The survivors guilt often got to her but she assured me that it was still worth attending the group. In any case, I'm motivated to join a group.

The boob smasher machine itself was weird. It didn't hurt despite the fact that I had to put my boob between two plastic scanners. I had tO put my arm up while the nurse positioned me for proper placement. It was fast and I only had to wait for ten minutes before the doctor called me in to review the scan. As expected it was fine. However when I asked where the cyst was that I've had forever was located, she said that she couldn't see it. Then she said that this was an example of easy it is to miss early breast cancer, even with the most detailed scan

I wrote this a week ago so I did call for another appointment to get my results. The nurse said the CT scan was fine, which I knew was the case. And, I finally got approved for Avastin, and so I start next week!

in a rut again

I'm in a rut and I feel like I've been trying to climb out of it for months. I was doing so well with my diet and cancer tea and making treatment plans, but everything just fell apart. In the past month I have lost 5lbs and I'm down to 122- even less weight than when I was first having cancer symptoms. My pants almost fell off when I was coaching, and my boss even noticed and told me to fatten up. I've also been so tired and unfocused that I can't really get anything done. I'm run down emotionally and physically. Last week I went in to the doctor and ordered myself a blood count and thyroid test to see what was wrong. I was convinced I was anemic. Although fatigue and weight loss were the exact symptoms I had when I was first diagnosed, I didn't think it was cancer this time because my last PET scan had been clean. After explaining my worries to the doctor, he told me that nothing was wrong with me physically, and my diagnosis= stress. Stress from being tired and jobless, having to move, losing some of my support system, and all the other changes in my life. Stress that has caused so many emotional breakdowns and panic attacks in the past few weeks. I'm can't seem to regain control of my health.
It doesn't help that I'm full on menopausal. I have hot flashes every night which often wakes me up. I must kick my covers off (and my cat) at least 10 times a night. And as I mentioned above, I'm an emotional mess. It's getting embarrassing.

Luckily my entire doctor's office has been amazing. I had a breakdown at the last appointment and got the medical assistant and nurse all worked up trying to help me out. They set me up with the social worker who set me up with prescription assistance to cover the $150 copay for Effexor, an antidepressant that has helped in the past. I had to go off before because it was too expensive, but Swedish got it all worked out. Now I can get it dispensed directly from their pharmacy for free.

I also started Tamoxifen last week. So far I don't have any side effects. Unless you count hot flashes, but I had started to get those before. I'm not sure how long I will be on this but I'm sure it will be awhile. Apparently it interacts with a lot of other medications- including every other psych med that I could be on. It also interacts with most cold medicines. It's not a bad reaction- it just makes the Tamoxifen not work as well.

The social worker also got me approved for financial assistance for Avastin treatments. However, before I can start it, my doc wants a baseline CT scan and a full blood workup. The CT scan was scheduled for this afternoon, and so I didn't have breakfast. I got to the clinic and it turns out that even though the medical assistant gave me a little card with my appointment on it, my insurance company required pre-authorization first. And nobody told me. So I was hungry and crabby most the afternoon. I'n supposed to call tomorrow and get it rescheduled.

I think I may start making protein shakes. The idea of drinking smoothies again almost makes me gag, but I need some way to bulk up. My boss got his wife to bake me bread and cookies with lots of fiber and things like oatmeal and flax. It's pretty yummy and nice to walk into the gym and get a little secret snack. He keeps yelling at me for not eating meat though. Sorry but that's not going to happen!

So the plan is now to get fat and get myself back on track. Getting fat is going to be fun. How many people get to go on that diet? I can't wait. I don't think there is anything I enjoy more than eating (when emotionally healthy). The other day I had one of those bags of ravioli that you can steam in the microwave- I ate the WHOLE bag. Another day I at an entire large frozen pizza. Too bad neither of these things are that great for me, but they're a start. What I really need is a personal chef

Shannon Miller has ovarian cancer...

http://yourlife.usatoday.com/health/medical/cancer/story/2011/04/Exercise-is-springboard-to-recovery-for-cancer-patient/46289626/1

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....

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.