Update: Herceptin, Aches and Pains, and Panic

Just came home from my latest Herceptin appointment. I saw Dr. Bott as well. I showed him the report that said I have Epstein Barr virus and he didn't think that was what is causing my aches and pains. He said that almost everyone over the age of 20 has had EPV, and that the report doesn't prove that's what is wrong right now. I'm kind of annoyed. I really don't know what to think now. For the last several days, I've felt like I have an excuse for feeling awful and needing to rest more. Now, I don't know what to think.

Also, I asked him about the follow up on the cancer. I've been upset because he isn't going to do any big tests (scans) until something hurts or a cough won't go away, etc. But, he explained today, that each time I come to see him, he has blood work done that shows him if anything is wrong - like in my liver. If something bad shows up in the bloodwork, then he'll do a liver scan (or whatever). I feel much better. Yes, because I'm HER2 positive, if the cancer comes back, it will be aggressive. But, Dr. Bott is being aggressive too. So, that's good. Plus, the Herceptin that I've been taking makes my prognosis much better.

I had a difficult time at the cancer center today. I don't know why - I just didn't want to be there, I guess. I can't wait to be done with the Herceptin treatments - I have to continue until the end of October. I felt like I was having a panic attack while I waited today. I guess just looking into the chemo room was enough to make me feel awful. Hmmm. That's never happened before.

This will all pass, I know.

Epstein-Barr Virus

I just found out that I have Epstein-Barr virus. I KNEW IT! Let me explain...

Last December, when I was right in the middle of my chemo treatments, my son came home from college over the Christmas break. He had just been diagnosed with mono. Then, around the same time, my sister was diagnosed with Epstein-Barr Virus. That's the virus that causes mononucleosis. She was in intense pain. She could hardly walk.

Epstein-Barr virus is a member of the herpes family. It's a pretty common virus. In fact, as many as 95 percent of adults between 35 and 40 years of age have been infected. Mono, is a contagious viral illness that initially attacks the lymph nodes in the neck and throat. Mono is caused by the Epstein-Barr virus. The virus enters the lymph nodes and attacks the white blood cells manufactured there. As the white blood cells come into contact with the virus, they change shape and multiply. At first, there are no symptoms because it takes several weeks before enough of the altered cells can accumulate to generate infection. The incubation period in adults is quite long; sometimes, 30 to 50 days. I didn't start to notice symptoms until March. Then I started to get really sore. Almost all of my muscles and joints hurt. I've had a lot of fatigue, too, but I thought that was just from the chemo.

I told my oncologist, the last time I went in to see him, about how sore I've been. He had some blood tests done, to check for things like Lupus (which is a chronic, autoimmune disease, which causes inflammation of various parts of the body) and Rheumatoid Arthritis (symptoms can include fatigue, loss of energy, lack of appetite, low-grade fever, muscle and joint aches, and stiffness). The tests all came back negative. After I had my blood drawn and went home, I remembered that I had been exposed to mono (through my son and my sister), and so I called the doctor's office and told his nurse that they might want to check for Epstein-Barr as well. His reaction? "If I thought it was Epstein-Barr, I would have tested for that". Yeah. So, NO, he didn't test for it. I got a call back from the nurse a few days later and she reported the negative findings and that was it. No further testing. No ideas on how to help. Nothing. So, last week, when I had my kids into our family doctor for scout physicals, my doctor asked how things were going with the cancer treatments and how I was feeling. I told him about the pain (and that I had been exposed to Eptein-Barr and mono). He was concerned enough to order more blood work to check for that. Today I went to see him, and sure enough, that's what I have. There really isn't much I can do for the pain. I just have to let the virus run it's course. It could take awhile, because my body has to build up the antibodies to the virus, and my immune system isn't quite up to the task right now. I just googled Epstein-Barr and found that it can affect the nerves of the body, resulting in headaches and muscle pain. These symptoms are usually seen in the early acute stage when the symptoms are most severe. My doctor thinks I'm right in the middle - the worst - part of the illness right now.

But, it sure is a relief to at least know for sure what is causing all of this pain. I really feel about 80 years old. My knees, especially, hurt like crazy every time I try to stand up. I'm just so annoyed with my oncologist. He completely ignored what I told him. Geez. Whatever.

I think I'll go get some Epsom salts (high in magnesium - which is helpful in relaxing the nerves and muscles) to add to my bath water tonight. I'm going to soak the pain away. Hopefully it works. :-)

Slowing Me Down

Back in April, I wrote about being sore all over. I'm still very sore. It seems to be getting worse. Almost every muscle and every joint in my body hurts. The last two days, especially, have brought foot pain. It's hard to walk and by nighttime, my feet and legs are in so much pain I can hardly sleep. In fact, it was 2:30 am this morning before I was able to fall asleep. I wish the pain would go away, because it's really slowing me down. I thought if I started to exercise - walking every day - it would start to get better. But, it seems to be worse after I exercise. I wish that wasn't the case. It's hard to even want to go walk when I know I'll just hurt more when I'm through. I went to the foot doctor the other day because my toenail had to be removed (because it turned black, due to chemo) and he asked me how I'm doing. I told him about the aches and pains. I used to work for this doctor, so I really trust him. He wondered if my oncologist had given me any anti-inflammatory medication. I told him no, and so he gave me some. I'm going to start taking them every day. I've also started to take my husband's vitamins. My sister, Kris, gave me a bottle of Seven (google it) and I'm going to take it twice a day. I'm hoping that these three things, and walking, will help me control the aches. When I was diagnosed with breast cancer, I never thought that 10 months later I would feel this awful. I thought that when I finished with chemo, things would get better - that chemo was the worst of it. It's hard to get going again with my life when I'm still not feeling well. There is a light at the end of the tunnel, however. Several people I talked to, who have had cancer and chemo, have told me that this will last for about a year and then things will get better. A year is a long time. It's difficult to get back to taking care of my family and back to work when things hurt. But at least it will get better at some point. Has anyone else (previous cancer patients) had these problems?