[Tom]

Hi everyone. I still have no computer, so I am sitting in the back of our van outside a friend's house, working from his wireless laptop. I think the neighbors think I am a private investigator on a surveillance. I expect the local police to show up at any moment.


First, let me thank Lani fo her fascinating post on capcetibine. Oddly enough, I asked the oncology nurse about Xeloda the other day, and she immediately said, "Oh Mom couldn't handle that. You'd have a terrible time handling her with diarrhea". Geez, I appreciate their concern for me, but I'd rather they think of Mom's well-being before mine. I don't care how many times I have to change her if she is still breathing. I welcome the privilege.


There has been a bizarre twist in Mom's saga. I am being careful not to get my hopes up too much with it, but I am clinging to all lifelines at this point. During another confernce with the one onc, I asked why the PET results seemed to show metastases in areas that you would not expect to see them (colon, bladder, etc.), and nothing in areas where you would. He had no explanation, but still insisted on stopping the Herceptin, saying the disease had clearly progressed.


I asked if the areas that lit up on the PET, which he determined to represent a low tumor load overall, would explain her constant low-grade fever and soaking night sweats. He said that they would not cause such nigh sweats. I then told him that one of the things I worried about when she began the night sweats, was pneumonia or even TB, perhaps acquired during our dozens of trips into hopsital settings. He said that the chest film I had requested a few weeks earlier, showed no pulmonary infiltrates.


I then insisted on a PPD (purified protein derivative) test, to see if she had been exposed to TB. He agreed, but said that even if she did have TB, it would not light up on a PET. I was disappointed to hear that, but still wanted to know if she might have it. The test is scheduled for Monday morning after her bone scan, but will take 48 hours to "cook" and be available for the other onc to read on our Wednesday visit.

Now for the bizarre twist. I went to the local library wher Mom was librarian for 35 years, and went online. I searched for information on "False Positive PET Results". I was stunned! TB, in many of it's manifestaions, including extra-pulmonary TB, and something called Tubercular lymphadenitis, DOES IN FACT light up on PET. As a matter of fact, PET is used to diagnose and follow treament of TB. Do you believe it? This, after being told for certain that TB does not show on PET. And of course, the radiologist interpreting the PET result is focused on a history of an aggressive breast cancer, not anything like TB.


Grant it, it's not much to cling to, but I will grab any rope hanging in the water, even if it's a fishing line with a sharp hook. There is a remote possibility that what they are seeing is extra-pulmonary TB. I was never aware that TB cold be found in the colon, bladder, spine, lymph system, and other places. If we are lucky enough that TB is the culprit, Mom, me, and even the pets will have to be treated. That should be interesting. People are worried about me not being able to have friends over. Ha, most of my friends stopped coming to visit long ago. They are "uncomfortable" around seriously ill people. They should take a good hard look at what might be down the road a few years for most of us.

Anyway, the plan is to hope it is TB and get the testing done. If it still turns out to be metastatic disease, I will deal with it somehow. I am looking favorbly at the Xeloda, as many of you have mentioned, and will ask about possibly doing Xeloda AND Herceptin, even if I have to tie the onc up and make him an offer he can't refuse. I am still going to try and get her the lapatinib (Tykerb) somehow. That should prove to be an interesting battle.


And so, on this bright and sunny Easter morning, as I try to imagine what it must have been like two thousand years ago for those who found that stone rolled away, and Christ absent from his tomb, I have found my own little ray of divine hope shining warmly on my skin. I wish all of your a wonderful, and hopefully joyful Easter, and thank you for all of your prayers and ideas. You have all been so kind to me, and Mom even if she has no idea. I will keep you posted as often as possible. I bought a new operating system for my computer last night, and hope to be up and running from my bedroom again soon, rather than from the back of van. Thank you all again, from the bottom of my heart.


Sincerely,
Tom