Clean hair

It's been a fairly good week. The big radiation or no radiation question is still weighing on us. Eric and I have done a lot of research, and we have three appointments to get second opinions.

• Radiation Oncologist at Northwestern - April 7th
• Medical Oncologist at University of Chicago - April 7th
• Radiation Oncologist at Stanford - April 12th

The doctor from University of Chicago studied in Belgium. I'm hoping he adds a European slant to the conversation; he's also an expert on stem cell transplant (the next step if this doesn't work). Most of the studies on Hodgkin Lymphoma are out of Europe because of their ability to fill the studies easier than we can here in North America. Perhaps he can explain the dichotomy between Europe and the US on the radiation topic from a different standpoint. Yeah yeah ... its a long shot, but we don't have anything to lose.

The Oncologist from Standford is Dr. Richard Hoppe. He wrote the medical textbook - Hodgkin Lymphoma - and he's our medical oncologist's friend. Our Oncologist thinks he may agree with no radiation even though he's a Radiation Oncologist. I'm hoping everyone is in agreement because it will make my decision easier. No radiation is generally for those patients with favorable Hodgkin's. I found out at my last appointment that I am officially considered unfavorable. To be unfavorable, you need to have at least one of the following (these qualifications vary quite a bit from program to program, but here's an example):

1. male (we always knew they were unfavorable)
2. Age greater than 45 (hmmm... my husband is but you don't get older from osmosis.)
3. Sed Rate without B symptoms OR >30 with B symptoms (I don't qualify, but I am just on the cusp of qualifying)
4. Greater than or equal to 4 lymph node sites (I have 4 sites and maybe even 5 sites)
5. 10 cm growth inside mediastinum (My largest growth inside the mediastinum is 6cm, but outside it's 9cm. Some programs say it can be inside OR outside the mediastinum which is the center of our chest. So again, I'm closer to qualifying than I want to be.)

As my doctor said, I am borderline. If I was favorable (and I'm not) and I did not have radiation, I would have an 87% chance of FFP (FFP basically means that I won't have a Hodgkin Lymphoma relapse). If I was favorable and I did have radiation, I would have a 94% chance of FFP. Having radiation comes with long term risks. Mainly, heart disease, lung cancer and breast cancer ... breast cancer especially may increase to as high as 50 times more likely than the average person 20 years post treatment.

Now Kari you ask.. what the heck does that mean. You just said you're not favorable ... what are the stats on not favorable. I don't have a good answer for you because many of the studies that have been done are stopped because too many people relapse without radiation (Sounds scary, but I guess a few percentage points is considered too many people... I'm not sure where the line is drawn. Also, many times these unfavorable studies include people who are stage III and IV so the data is skewed). The studies for unfavorable tend to concentrate on how much radiation and chemo to give not whether or not to give radiation.

Kari ... you're sounding like a lunatic ... why wouldn't you get radiation. ENTER ... the clean PET scan. In the last few years, doctors have started to use the early PET scan to help determine treatment. None of the favorable/unfavorable indicators can hold a candle to the early PET scan in determining whether or not a patient will or will not relapse. About 80% of patients have a clean early PET scan (actually it's 85% of favorable patients and 72% of unfavorable patients) and I am luckily one of the 72%. There are a whole bunch of studies that have just started or are ongoing regarding the early PET scan, but there aren't a lot of results yet ESPECIALLY for those considered unfavorable.

Now, you know .... you know all of it ... the dilemma ... the gamble. My doctor said that if I were his daughter, he would not do radiation. We'll see what the other three docs say. We have about 2 weeks to make the decision. We'll keep you posted.

HAIR WATCH (the crowd favorite) - I still have hair on my head. My eyebrows are intact and so are my eyelashes (though thinning). I don't have a lot of leg hair though. I have only been washing my hair twice a week. Someone told Eric the less you mess with it, the longer you'll have it and I took that to heart. I try not to touch it ... ever. Yes yes... I look like I should break out into song ..... grease lightning!

LIBRARIAN WATCH - So, there is a cancer library at Northwestern hospital. I called and spoke to the librarian. She is doing some research on radiation for me, and will be sending me lots of reading material tomorrow morning. She has access to a lot more material than I do. Yeah for librarians! They are similar to Fire Fighters .... everyone loves librarians!