Herceptin, bone pain

I had my herceptin yesterday. I was up all night last night with bone and muscle pain. It is really bad in my right hip but I do have the pain all over. I do worry that the cancer is in my right hip. I realize that it is extremely unlikely to recur while it is actively being treated but I sometimes have trouble not going there. The fact that I have pain all over, although less intense, does give me some comfort. I think it is unlikely that I could have it everywhere. I had a bone scan a year ago and there was no cancer. I think it is impossible that it could be everywhere in a year. Breast cancer is considered to be a slow growing cancer.

I have been told by my oncology office that bone and muscle pain is not really a herceptin side effect. However, I go on the herceptin web site and breast cancer.org and it seems most of the people are having the same issues. On the drug manufacturer's website it is listed as a side effect.

When I was getting my herceptin I had to get more appointments. The nurse told me I had to get herceptin until March. I kind of freaked. I told her the doctor told me it would end in December. Then she asked me when I started chemo. I advised her that it was December 7th. She asked me if I was sure. I told her I would bet she could ask anyone in the room when they started chemo and they would know the exact date for sure. A few women were nodding their heads. There are some things you know for sure and that is one. I am sure I will always remember the date my daughter was born, the date I was diagnosed with breast cancer, the date the chemo started and, for sure, the date it ended.

In the end she checked with the doctor and he said it should end in December unless there is some type of recurrence. If there is a recurrence I will need herceptin for the rest of my life. That would be the biggest bummer ever.

I have an appointment with the physician's assistant at the oncology office on Thursday. She is going to go over all my blood work, MUGA scan (they already told me it was normal) and a lot of other things.

On a positive note, my stepmother Betty is home and doing well. She is very happy to be home. Julianna is enjoying her new school. She is a little ray of sunshine, always happy and full of life. She really does keep me going.

Thanks everyone for all the positive vibes, good thoughts and prayers!!!

Got yelled at, need MUGA scan

The nurse from my oncologist's office called today. She advised me that I haven't had a MUGA scan in six months. I knew that but I have been avoiding it. I hate going for it because they inject tons of radioactive stuff into me and tell me I have to stay away from Julianna for two days. I can be in the house with her but I can't hold her or snuggle with her. Plus, I figure pumping all that radioactive stuff into a person can't be good.

She said the herceptin can damage the heart and lungs so we have to do MUGA scans every three months to make sure its not doing damage. It can cause congestive heart failure. I don't have congestive heart failure. I had it when I delivered Julianna. It was pretty horrific so I am certain I would know if I had it again.

So, they made me schedule the scan. It is September 2nd at 7:30 am. They only do MUGA scans on Thursdays at 7:30. I think I will soon be like those glow night lights. If any one's kid is afraid of the dark I will be able to stop by and sit in their room. It will help you save on electricity.

I have herceptin on Monday. They gave me a two week dose last time on purpose to change my schedule. They didn't want my day to fall on Labor Day because they are closed.

I am still fighting fatigue. I joined Weight Watchers to try to lose some weight. I am hoping that some weight loss might help with my energy level. The doctor's office told me not to get too discouraged if I don't lose because a side effect of the herceptin (and the chemo) is weight gain. I am going to try anyway. I am also having some bad hip and back pain. I am hoping it is just muscular but I am going to have them check it out. I would bet they will order some type of radiological test, they like those.

Thanks everyone for all the help, love, prayers and strength!

DR. Citron

I made it to work today and I seem to be functioning! I had my appointment with Dr. Citron. He is usually running on time so I can go on my lunch. He congratulated me on finishing the treatment. It was actually pretty difficult. I am still fighting off side effects. He said my counts are pretty low and that I need to take iron (again).

He is sending me to an opthamologist because of a weird side effect that I had. I got this blue flashing light in my right eye. It kind of looked like how your eye responds when you look at a bright light. The only problem is that I didn't look at a bright light. It was blue and flickering and took up almost the whole field of vision in my right eye. If I closed my eye it was still there. It lasted a few hours but then went away and it hasn't come back. Dr. Citron said it could be from the taxotere but it is certainly not a common side effect. It could also be a migraine, even without a bad headache. (I didn't know you can have migraines without bad headaches. He says yes.) It could be something completely different so he wants me to get my eye checked to rule that out. My guess is that it is from the chemo. Taxotere has tons of neuro side effects and I seem to have gotten them all.

My knees and elbows are pretty swollen. He thinks it should go down soon. My right elbow is particularly bad. I am having trouble picking things up. If I have a small soda I am ok but if I have a large I need two hands to hold it. I can't pick a large soda up with just my right hand. He thinks it should resolve soon. I hope so because I am going to need to carry things in the airport on Thursday.

I had a small lump under my right breast. He checked that and said it was scar tissue from the reconstruction. That was a load off. He said the cancer is very unlikely to recur while it is actively being treated. He said that is why so many people get very depressed when their chemotherapy ends. I am not depressed that chemo is over. I am thrilled and I will be even happier when I start feeling better. I have herceptin until December and I am unlikely to recur while that is ongoing too. Maybe when that is over I will get depressed, but somehow I doubt it. I just want my life back.

I don't have to see Dr. Citron again for 3 months. I have to get the herceptin every three weeks. I also have to go for another MUGA scan in April. They have to make sure the herceptin is not effecting my heart. My MUGA scans have been great so far.

Thanks everyone for all the support. I could not have gotten through this without everyone's help. And, I still have a full head of hair!!!!!!!

TCH Chemo #2

Today was my second "big chemo". It was taxotere, carboplatin and herceptin. I was very stressed out going into this. Its really hard when I know I am feeling pretty good right now and won't shortly. It was a whirlwind getting it all together. The ice, thermometer, breaking up the ice, packing the coolers, etc. Then going to othe drug store and fighting for the pills. They are supposed to be monthly but I am getting chemo every three weeks. This all while worrying about neglecting Julianna. My brother Rich was visiting so he was able to amuse Julianna for awhile. She is now staying at my friend Colleen's house. It is a HUGE help.

We got there with the packed cooler. Cathy and Vanna came. Cathy was going to teach Vanna what to do. They didn't like the idea that I had two people with me so we had to do the teaching part fast and Cathy had to leave. Despite Cathy's absence Vanna did a great job. we started the Cold Caps around 2. We finished them at 9pm. It was a very long day.

I didn't have any immediate side effects. When I got home I was having some trouble with balance.

The nurses at the chemo place said I should lose my hair by Christmas. It is still here. Today they said I should certainly lose it after this treatment, I am planning to prove them wrong.

Keep your fingers crossed that I have no side effects this time. Thanks so much for your support!

Tumor Hormone Status

I found out the hormone status of the tumor today. It is estrogen receptor negative (ER-) (bad) progesterone receptor negative (PR-) (bad) and human epidermal growth factor receptor positive (HER2+) (waaaaaaaaayyyy bad). What does this mean? ER- and PR- means the tumor won't respond to hormonal therapy. HER2+ means that the tumor is especially aggressive. In about 25% of women with breast cancer there is an alteration to the HER2 gene that produces an increased amount of the growth factor receptor protein on the tumor cell surface. This causes the cells to divide, multiply and grow more radipdly than normal. It causes more aggressive disease, poorer prognosis, more liklihood of recurrence, and decreased survival compared to HER2 negative disease. The only positive thing is that the HER2+ disease can be treated with herceptin. It will be in addition to chemotherapy. I will need the herceptin for an entire year. It is usually infused every three weeks. It is a dangerous drug and can cause severe heart and lung issues.

On a brighter note, I went to the Jimmy Buffet concert at the beach, it was awesome. Thanks Bob! and Colleen for watching baby J.