Alright, I promised I’d share my mom’s story:
Back in 2005, she noticed this black spot on her left lower leg—just above the ankle. It wasn't there before, about the size of a fingernail. There were a few bluish spots around it too, but since Mom deals with thrombosis in that leg, she didn't think much of it—figured it was just some bulging veins or something. It wasn't until the spot actually started bleeding that she went to her GP, who sent her to a dermatologist and then finally to MD Anderson Cancer Center to have the area excised. I really want to give credit to Dr. Nolan there.
When she went back to get the results, the doctor who usually handles her was away on vacation. He was replaced by some other guy—I can't remember his name right now, but I'll find out and post it later because he was completely incompetent. He looked at the pathology and told her everything was fine, diagnosing it as a balloon nevus—basically a blister mole—and said she was good to go. Even the dermatologist over at Mayo Clinic was useless; she was way too happy to just tell her the results were "good."
The only one who actually used her brain was a little-town family doctor who told us it didn't look like a good sign at all.
At the three-month follow-up, Dr. Nolan practically grabbed his head when he saw what his colleague had reported... long story short, Mom ended up in surgery. They performed a wide excision of the mole along with the surrounding tissue. They checked the lymph nodes under her knee and in her groin, and nothing was found then. I don't have the paperwork handy, but it was Stage 1, though they were worried about those tiny satellite spots appearing around the site.
After that, Mom underwent six cycles of DTIC chemotherapy because they said there wasn't anything else they could do. For the next five or six years, she went in for checkups every four months, where they only checked tumor markers—which always came back normal. In the meantime, she also dealt with breast cancer, which was caught early and removed along with the lymph nodes; she had targeted radiation for that area as well. Throughout all this, her lower leg just kept looking worse—spots would pop up and disappear, or show up and stay. A few months ago, one started bleeding again, and despite regular dressing changes, it wouldn't heal. Two months ago, she had surgery at Mayo Clinic to remove that section with deep margins, and they had to graft healthy skin from her thigh. Despite how horrific it looked, it healed well, which is honestly a miracle given her thrombosis issues.
Two weeks ago, Mom felt a lump in her groin, and a few months back, she felt one in her lower back—but she didn't tell anyone.
Diagnosis: lymph node metastases. Tumor markers are normal, and the abdominal CT showed nothing.
Dr. Thomas at the Institute has put her back on DTIC; he says there isn't any other choice. She starts on June 6th.
Look, I know the situation is bad. I know chemo efficacy isn't great, and I know there isn't an adequate treatment out there. There aren't even clinical trials available. I'm going to buy her some beta-glucan to hopefully help her get through this, and then we'll leave the rest to God.
Any advice or experiences you guys have would be appreciated.
Back in 2005, she noticed this black spot on her left lower leg—just above the ankle. It wasn't there before, about the size of a fingernail. There were a few bluish spots around it too, but since Mom deals with thrombosis in that leg, she didn't think much of it—figured it was just some bulging veins or something. It wasn't until the spot actually started bleeding that she went to her GP, who sent her to a dermatologist and then finally to MD Anderson Cancer Center to have the area excised. I really want to give credit to Dr. Nolan there.
When she went back to get the results, the doctor who usually handles her was away on vacation. He was replaced by some other guy—I can't remember his name right now, but I'll find out and post it later because he was completely incompetent. He looked at the pathology and told her everything was fine, diagnosing it as a balloon nevus—basically a blister mole—and said she was good to go. Even the dermatologist over at Mayo Clinic was useless; she was way too happy to just tell her the results were "good."
The only one who actually used her brain was a little-town family doctor who told us it didn't look like a good sign at all.
At the three-month follow-up, Dr. Nolan practically grabbed his head when he saw what his colleague had reported... long story short, Mom ended up in surgery. They performed a wide excision of the mole along with the surrounding tissue. They checked the lymph nodes under her knee and in her groin, and nothing was found then. I don't have the paperwork handy, but it was Stage 1, though they were worried about those tiny satellite spots appearing around the site.
After that, Mom underwent six cycles of DTIC chemotherapy because they said there wasn't anything else they could do. For the next five or six years, she went in for checkups every four months, where they only checked tumor markers—which always came back normal. In the meantime, she also dealt with breast cancer, which was caught early and removed along with the lymph nodes; she had targeted radiation for that area as well. Throughout all this, her lower leg just kept looking worse—spots would pop up and disappear, or show up and stay. A few months ago, one started bleeding again, and despite regular dressing changes, it wouldn't heal. Two months ago, she had surgery at Mayo Clinic to remove that section with deep margins, and they had to graft healthy skin from her thigh. Despite how horrific it looked, it healed well, which is honestly a miracle given her thrombosis issues.
Two weeks ago, Mom felt a lump in her groin, and a few months back, she felt one in her lower back—but she didn't tell anyone.
Diagnosis: lymph node metastases. Tumor markers are normal, and the abdominal CT showed nothing.
Dr. Thomas at the Institute has put her back on DTIC; he says there isn't any other choice. She starts on June 6th.
Look, I know the situation is bad. I know chemo efficacy isn't great, and I know there isn't an adequate treatment out there. There aren't even clinical trials available. I'm going to buy her some beta-glucan to hopefully help her get through this, and then we'll leave the rest to God.
Any advice or experiences you guys have would be appreciated.