Thursday, March 10, 2011


I am hooked up to my Herceptin infusion as I type this. I'm not even sure which # this is as I stopped counting when I realized that the Herceptin doesn't really cause any side effects and that it will be my saving grace. I'll be done sometime in September or October, I think. Herceptin is quite frankly my favorite part of this journey. Its fast, it doesn't hurt, and its quite possibly the one component that is going to save my life. Also, I get to see my favorite nurse, "Net" and "John" the CNA. Today was a particularly interesting trip to the chemo room as someone was having some severe issues with their chemotherapy and was in the bathroom vomitting and unable to get up. But get this, the nurses had to call 911. I'll be honest, I was really confused. We are currently at Oregon Health & Science University's Center for Health & Healing which is connected to the Hospital by tram...but they are calling 911. For paramedics to come take someone from one part of the hospital to another part of the hospital. You would think they could have just called the hospital directly to send down an ambulance or put the person on a stretcher and taken them up by tram (which would have been the quickest route since I was able to finish my infusion, check out, go downstairs, get in my car, drive out of the parking lot and the ambulance was just getting there). Anyway, interesting scenario to say the least.

On that note, I met with Dr. Luoh this morning before treatment and, as usual, broke out my paper filled with questions for him. Normally, my questions are written on something I found in my purse: a gas receipt, an appointment reminder card, or the occassional envelope. There are always more questions than I really feel comfortable asking and they are usually scribbled akwardly because I attempt to write them all down while driving to my appointment. Many of them consist of the same questions I asked the Nurse Practitioner previously and just want to test everyone to ensure I get the same answer. Yes, I am the patient from hell.
On my gas reciept for today: Tamoxifen Metabolism, Clinical Trials, Ovarian Suppression, Her2 vs ER+ and Tykerb for early stage BC. Let me say first that I feel sorry for my amazing oncologist. I put him through the ringer every time I see him. I know he must think to himself "god, I wish that girl would stay off the Internet so I can do my job", but instead he just responds "very good questions, Heather. I see you have been doing your homework". He is so patient with me, and openly laughs at me because I'm spastic and passionately insane about saving my own life. He told me multiple times today that "we will talk about that when the time comes"..... I guess I'm getting ahead of myself.

So here's the lowdown on some of the issues that I discussed with him:
Tamoxifen: I have a prescription for Tamoxifen in my hands right now. I am supposed to wait a week for my body to heal from radiation before filling the prescription and starting down the road of unknown side effects. For those of you reading who don't know what Tamoxifen is, here is what Wikipedia tells us: "Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked." I have heard many women also describe Tamoxifen as "a living hell". Tamoxifen is known to cause hot flashes, irritability, insomnia, weight gain, decreased sexual drive, and overall feeling of preference for death. Because I am 100% estrogen/progesterone positive, Tamoxifen is not a choice for me. I HAVE to take Tamoxifen for at least 5 years in order to increase my chances of survival.
Dr. Luoh did some blood work to ensure that I do not carry any genes that pre-dispose me to blood clots (another side effect of Tamoxifen). Apparently these are new tests that are being recommended by some studies done at Harvard University which can determine whether or not the drug is too risky for me to take. This is another reason that I LOVE being treated at OHSU. They are always on the cutting edge of treatment and following the studies as they are released. Dr. Luoh does not, however, run Tamoxifen metabolism tests and said that if I do not have side effects from the Tamox then he will consider running some additional tests to make sure that I'm metabolizing it. Basically, the worse I feel, the better chance that its working. It looks like the studies that came out of the San Antonio Breast Conference this year refute that poor metabolizers will receive a decreased benefit from Tamoxifen. Dr. Luoh explained this research to me, but honestly, my ability to understand what he is talking about most of the time is limited (these are the reasons that Shane needs to be in these meetings with me!!). Regardless I know the following: Tamoxifen. Next Monday. Start.

Clinical Trials: Dr. Luoh expressed that he is more than willing to sit down with me and compare all of the trials that I am interested in when I'm ready to do them. He seemed to lean toward the Vaccine trials, but said that he would support whatever decision I made and would help me decipher my options. He is running the Neuratinib trial at the moment and said that I would definitely qualify for that trial once I'm finished with Herceptin. The hard thing is that the Neuratanib trial is a double-blind study, so there is a 50/50 chance I won't get the medicine. The other hard thing is that many of the Vaccine trials have not had promising outcomes. My guess is that I'm only going to get one shot to do a trial (you skew the results if you've already done other trials). Ten years ago some women in my situation made the decision to do a HER-2 trial for a little known drug called Herceptin. Turns out it saved their lives. I surely don't want to miss the next Herceptin!! :-( More to come on this when I make my decision about trials (probably September/October).

HER2/ ER+: One of the things I've been hearing a lot about lately is the idea that HER2 breast cancer that is also estrogen positive acts like HER2 and may not need to be treated as estrogen positive. Dr. Luoh confirmed that this is something that is being discussed and likely very possible, but until they have additional research he is adamant that I complete Tamoxifen and possibly do ovarian suppression.

Tykerb for Early Stage: Basically, Dr. Luoh told me that this isn't a possibility at this time and the closest thing would be the Neuratanib trial (which is a sister of Tykerb). Apparently the Tykerb isn't through trials yet for early stage and the company promoting Neuratanib is being very aggressive with their trials starting stage 4 and early stage at the same time. I guess I'll have to wait if I ever want to get Tykerb or I might not need it since Neuratanib is very similar.

Ovarian Suppression: Basically, this is waiting on whether or not I start menstruating again. If not, I won't need the ovarian suppression. Dr. Luoh did say that we could do the suppression for 5 years if we needed to. He hinged the suppression on the 5-year mark because, he said, that due to the aggressive nature of HER2 it is most likely to come back during the first 5 years. If it doesn't then my risk for a reoccurance decreases. Basically, I need to work extremely hard to get through these next 5 years!! The good thing about this is that I may not have to have an oopherectomy after all. If current research is correct, the 5 year suppression may put me over the edge into "somewhat" clear territory. Obviously, I know the cancer can reoccur at anytime, but this news is good!

The other good news is that I am done with radiation tomorrow!! My side feels as though it has been filleted (not sure if that is the correct spelling) and looks like raw hamburger meat. I have been taking pain killers and putting Zinc on the open wounds, but honestly I don't think anything but time is really going to heal these nasty wounds! Sunday night I was up most of the night trying to find a comfortable position and a comfortable top to wear. I stayed home Monday from work to catch up on my sleep and put gel packs on the wounds. I've been having flashbacks of sleeping after my mastectomy because I'm not able to roll over onto my side. One more day and then I can start the healing process! I know my body will be as happy as my mind!

..and for the FINAL good news this week....I have been awarded a scholarship to go to Washington DC for the National Breast Cancer Coalition Advocacy Conference in April. The scholarship pays for everything except travel. I'm really hoping to be able to attend, but with this week's expenses (fence blowing down, car costs), I'm struggling to find the cash to buy an airline ticket. We'll see how things pan out...either way I got the scholarship!! YAY!

We are one more step closer to the end of this journey. Hopefully by next year this time we will be able to start the process of putting cancer behind us and begin to regain trust in the future.

Much love,
Heather & Shane

No comments:

Post a Comment