Nancy's Health Blog

This is a diary of my breast cancer diagnosis and treatment. I've been adding it in reverse order so the most recent information is at the top.

Thanks for the cards, e-mails and flowers. I do appreciate being in your thoughts and hearts and prayers.

Nancy

March 31, 2006

We finally have a plan. I talked to Dr. Kashef today and his consult with the doctor at UCSF said the same thing Dr. Robinson said - "proceed with caution". So we will start herceptin with the taxol on Tuesday and watch my heart function very closely.

I also just spoke with the cardiologist that Dr. Cortez recommended. His name is Dr. Wohl and he has a cancellation on Wednesday afternoon at 4. So I took that appointment.

So we are good to go. I'm a little apprehensive about the chemo, especially since I've started feeling more like myself and really don't want to go back to feeling crummy. But the sooner we start, the sooner it is over with.

The taxol may make me lose my hair again so I figured I'd document what has regrown. I even have eyebrows. It's hard to take your own picture so forgive the angle.

Hair!

March 29, 2006

Heard back from a couple of my second opinions today. Dr. Robinson in Colorado said the drop is due to the epirubicin and of concern but not enough to withhold herceptin. He would go ahead and start and watch my ejection fraction closely (using 57 as the baseline).

A cardiologist Jo works with said the echo drop from 61 to 57 is most likely variation in the test. That 57 is not great for my age but still normal.

Both suggested that seeing a cardiologist locally would not be a bad idea. Having a cardiologist on my "team" at the beginning who knows my history and what's going on might be a good thing. And to make sure I take along my echo and MUGA films so they can read them for them self.

Dr. Kashef is waiting for an email reply from a doc at UCSF. He was not in the office today (Wednesday) since he has office hours in Waimea about a hour away from here. I expect I'll hear from him on Thursday.

I think the cardiologist might be the way to go. I really want herceptin, but want to be careful too. I plan to talk to Kashef and Cortez tomorrow. Dr. Cortez might be able to give me the skinny on cardiologists around here.

March 27, 2006

I had my first MUGA on Friday, March 17 and on Wednesday, the 21st, the admin at the oncology office called to tell me the oncologist wants me to get another echo. He, of course, is gone for the day.

I called back once I had a moment to think about it and told the admin I was concerned and would like to speak to him or I was going to worry all night. She said she'd try to call him and either he or one of the nurses would call me back.

So the nurse called and said that the oncologist consulted with a mainland specialist and the specialist advised getting an echo so we could compare it to the previous one - that MUGA is usually lower because of the way they are done. The nurse would not tell me what the EF was from the MUGA.

So then I ask if there was concern that I might not be able to start my herceptin week after next. And the nurse says if the echo is below 60 they might hold the herceptin!

So she says not to fret about it that we will know more when we get the echo - that I should try to relax and take an ativan if I need it. Easy for her to say.

Now I'm worrying that the epirubicin did something to my heart.

So this past Friday (the 24th) when I went in for my bloodwork, Dr. Kashef was there and asked us to come talk to him when I was done. He told me the MUGA showed an ejection fraction of 49.8! Yipes. He still said if the echo comes out under 60 he'd want to hold the herceptin. Where he got that number, I'm not sure since I have read that 50 was the cut off.

Well. I had the echo this afternoon and it came out at 57. It had been 61 in November.

I have no clue how it could have dropped that much except for the epirubicin. Can chemopause drop your EF? I have been exercising as much as the side effects would let me - treadmill and swimming laps. I did 45 minutes on the treadmill just yesterday.

I see my primary care doc tomorrow morning. I plan to ask him if he thinks I should see a cardiologist. I really really want the herceptin if the rest of my body can handle it.

I'm so bummed out right now.

March 16, 2006

WhooHoo! Had my last radiation treatment this morning. I baked some cookies and took them over for the staff along with a thank you card. Jonathan took our picture. My skin is improving slowly. Dr. Henry says it looks really good and that the lighter spots are the new skin forming. I'm to put lanolin-based moisturizer on it. It hurts a bit when it stretches but seems to be getting better each day. The area under my breast is pretty much all healed. I might try wearing a bra and see how it goes.

March 14, 2006

31 down and 2 to go! My skin near my clavicle took a turn for the worse in the last week. It is quite red and itchy/uncomfortable. The technicians and doctors say it doesn't look too bad and should heal by the end of the week. I feel sorry for whoever it is that has a bad burn. I pretty much stopped wearing a bra about a week and a half ago and am wearing undershirts. I look like I have a reverse halter top sunburn with straight lines in the shape of the radiation fields.

I think the first few days of Effexor and thinking my hot flashes were getting under control was just a fluke. They have been coming on strong all week. I asked the oncologist about it and he said it takes up to six weeks for the Effexor to work on hot flashes. Wearing a hat or bandana is too hot so I have been going sans headwear most of the time. I do have new hair coming in. It's about a 16th or 8th of an inch mostly on the top of my head. Of course the hair on my legs is growing faster than that on my head. Jonathan says I'm his chia pet.

I saw Dr. Kashef yesterday and Dr. Henry also. The plan is to start Taxol and Herceptin on April 4th. That gives my skin a bit more than two weeks to heal before we hit me with chemo. My blood pressure was slightly higher than usual (mine usually runs low) at 126/61 but Dr. Kashef said that is probably the Effexor.

Oh, and I forgot to mention that I saw the surgeon, Dr. Park, for a follow-up last week. He says I am healing well and he wants to see me again in three months then one more time six months later.

So Thursday is my last radiation and I am planning on making some cookies to take in for the great people there. Then Friday I have a MUGA scan to see how efficient my heart is before I start Herceptin. Keep your fingers crossed that the number is nice and high and that it stays that way. I want to get all the Herceptin that the protocol indicates.

So I get two weeks off! All I have to do is let my skin heal (no swimming pool, bummer). No running to Kona Hospital or doctors' offices for two whole weeks.

March 6, 2006

Had treatment number 25 today and saw Dr. Henry. The skin is definitely starting to break down and he prescribed some silvadine cream. This is an antibiotic that also has some anesthetic effect and should help with preventing infection. I have pretty much given up on wearing a bra at all. Fatigue is increased as well but that was to be expected.

The Effexor for the hot flashes seems to be working okay. The flashes are not completely gone, but much much fewer and less intense. The drug makes me a little queasy and fuzzy headed though with kind of a sick headache. I have been able to sleep at night which is good. I have been on the treadmill a bit (3 days last week and this morning). I think it helps me feel less queasy.

March 3, 2006

The hot flashes are pretty consistent and getting annoying. I have been kept up at night most of the week - too hot - too cold - waking every hour. So for two nights in a row I took an Ativan and that at least helped me to sleep. Not sure if how tired I am is from the radiation or lack of sleep, but I'm running a bit slow.

My skin has definitely reacted to the radiation now. The side of my neck down and under my arm are red like a sunburn. Under my breast is very red and raw. This morning there were 3 or 4 tiny blisters. The techs told me it could get worse before it gets better. Glad I have a couple days off over the weekend to heal. I was told to ditch the bra as much as possible and use cortisone cream. Let air get to it which is hard to do without lying down all the time. Today they suggested getting some cornstarch powder to help keep it dry. She mentioned a brand name but Longs didn't have any. I'll try the Johnson & Johnson cornstarch with aloe & vitamin E and see how that works.

After radiation Mare went with me to the infusion center for my blood draw and Aranesp shot. Decided to just wait for the blood results and see if I still need to get the shot. It took a while to get the results, but the hematocrit was up to 12.2 so no shot (yay). While we waited Peggy got a message to Dr. Kashef about the hot flashes and he had her call in a prescription for Effexor. It's supposed to work well. Let's hope it does.

My appointment with the surgeon was postponed until Tuesday as Dr. Park was out of the office today. Went to Waimea anyway but Merriman's closes for lunch at 1:30 and we got there a couple minutes late. So we had a very nice lunch at Daniel Thiebaut's instead.