Well, this is the crummy part. I can not sleep. It is three in the morning and I still can’t get any sleep. Last night was the same, so I am going on two days without more than an hour or two of sleep. And I was doing so well there for a while.
I will get back on track. Hopefully tomorrow will be better.
So, since I am still awake, I might as well write.
Treatment Plan: So here is the treatment plan that I was given. I am to have a total of six chemotherapy rounds. In addition to the chemo, I am also on a targeted therapy called Herceptin. Herceptin works on HER2+ cancer (the kind I have). It is an amazing drug and I am so grateful that Dr. Slamon at UCLA developed it. He has saved the lives of so many women, curing a type of breast cancer that once was really not curable. The chemo will be followed by surgery and then, most likely radiation. Reconstruction will fit in there somewhere – but, I am still doing research, interviewing plastic surgeons and learning about the different reconstruction options (especially given the likelihood that I will have radiation as part of my treatment).
Neo-adjuvant Treatment: When chemo is given prior to surgery it is called neo-adjuvant. In some cases chemotherapy precedes surgery in order to shrink the cancer so that surgery can even be done. That is not the case with me. My tumors are small and as a result I could have surgery at any time. However, the reason to do neo-adjuvant chemotherapy in my case is to see if we can watch the cancer shrink.
The advantage of doing chemotherapy prior to surgery is that we can watch and see that the chemotherapy is actually working. If I were to have surgery first, followed by chemotherapy later, then there would really be no way of knowing if the chemotherapy was effective with my cancer because we could not watch it shrink during chemo since it would already be removed.
This is significant for me and was a major reason why I chose to do the chemotherapy first. Everyone responds differently to treatment. And while it is more likely that the chemotherapy will work, I will have a greater peace of mind if I can know for sure.
For me it is all about making sure that I do everything I can to fight this disease now, stop it in its tracks and prevent it from coming back. If we can watch the cancer shrink, then we know that the chemo is working on my cancer and that it is then also killing the microscopic cancer cells that are floating around in my body (that without successful treatment, would come back). The kind of cancer I have – invasive breast cancer, that is HER2+, has a very high reoccurrence rate. That is why the treatment is so aggressive even though my tumors are very small. By adding radiation to my treatment plan, I can further reduce the chance of having a reoccurrence.
The other possible (hopeful advantage of having chemotherapy first is that I could have what they call a “complete response”. About 40% of women with the kind of cancer that I have, who undergo the kind of neo-adjuvant therapy that I am doing, experience a what is called a “complete response” – meaning that prior to surgery the cancer is eliminated.
If there is a complete response, then when I have surgery the surgeon is removing dead cancer. This would be best. It doesn’t change the need for surgery. But, it makes the surgery easier because there is no risk of infecting healthy breast tissue with cancer because the cancer is dead. So, that is what we are hoping for.
I am nervous about the upcoming breast MRI. The specialist I met with at UCLA said she would not do one until I was done with all six chemotherapy rounds. She said that she would not interrupt the chemotherapy. When I asked her what if I was not one of the 40% that has a complete response prior to surgery, she said “You’ll be on Herceptin for a year, what are you worried about?” Um, dying . . . that’s what I am worried about.
It was good to hear that she was so confident. But, unfortunately I don’t get that kind of reassurance from my actual team. Instead, I am told that I have a good prognosis. But, I am also told that the kind of cancer I have has the highest reoccurrence rate. I am also told that some patients come back with brain cancer. It’s not all rosy sounding. Well, okay, none of it is actually. But, I cope and I am grateful, so grateful that there is a drug that targets the kind of cancer that I have. Not all women respond to the treatment, but hopefully I will.
My Own Treatment Plan: In addition to the treatment plan that my oncologist and surgeon have put together, I have also put together my own “treatment plan” that includes a very changed diet and as much exercise as I can.
From the moment I was diagnosed I changed my diet. I considered myself pretty healthy before, even was a vegetarian for a number of years (although not most recently). But, after being diagnosed with breast cancer, I immediately changed my diet. I knew that my cancer was hormone responsive – meaning that in the presence of hormones, my cancer flourishes apparently. So, I decided to eliminate sources of hormones in my diet. I had also heard that sugar feeds cancer. I got a lot of information in the beginning (some of it pretty wacky) that made me pretty crazy. But, after doing a lot of my own research I chose to make changes that to me make sense.
I don’t know about whether sugar feeds cancer or not. But, I don’t get a lot of sugar anyway, so that wasn’t a big issue for me.
I have eliminated all dairy products and all meat except for some chicken and fish. Because my cancer grows with hormones, I have chosen not to get any (at least as little as possible) in my diet. I was told to avoid soy for the same reason because it is a plant based estrogen and would only encourage the growth of my cancer.
I have gone to a nearly completely organic diet. I do go out to eat and enjoy that still. But, I make choices that are lower in risk – for example potatoes are very high on the pesticide index – so these are pretty bad unless organic. But, broccoli, avocado and other vegetables and fruits are on the low end of the pesticide index and so are pretty safe to eat even if not organic.
No doctor has told me that I need to go organic. But, for me it makes sense. And, my doctors can’t believe how well I am doing – my white blood count has never left a normal range (normal, as in a normal person who is not going through chemotherapy) and my red blood count (something that typically gets low, causing anemia and pretty bad fatigue in chemo patients) is also within normal range. I think this is due to my diet and exercise (maybe more from the exercise, I don’t know). All I know is that so far, I am doing really well with the treatments (except of course for the time my first oncologist – who has since been fired – tried to kill me . . . I will save that for another separate post).
I have also eliminated caffeine. I was told that caffeine was okay. But, it is not. I stopped having coffee months ago. But, only just yesterday found out that the drug Herceptin does not interact well with caffeine – that caffeine reduces the effectiveness of Herceptin. This was in a study, not even all that recent. Yet, my doctors were not aware of this at all. Amazing. There must be so much to keep track of I guess, especially if you are a doctor treating many different types of cancers.
Still, I am just so glad that I had eliminated caffeine. I would have been devastated to learn that caffeine reduces the effectiveness of Herceptin if I were still drinking coffee. I wish I could tell every woman that is getting Herceptin treatments about the bad interaction with caffeine.
In addition to diet, I have begun an exercise plan too. Recent studies show that exercise during chemotherapy increases T cells and reduces the rate of anemia (caused by a reduction in red blood cells). 70% of chemotherapy patients get anemia. But, for some reason those that exercise regularly throughout their treatment, have a lower rate of anemia. So, I am trying to prevent anemia by getting as much exercise as I can.
Obviously some days are simply not an option. But, I try to get in a one mile walk every day. I was able to keep that up this past week. I plan on going to the gym next week (after the MRI and before my next chemo on June 4th). Assuming, of course, that the MRI results are good and that I am then still going ahead with the fourth chemo round.
Well, I think I have had enough, it is 3:40 am. Maybe now I will be able to get some sleep.