CJ_in_NC

Hi Fred, I'll go ahead and post the info here. If you've been going to the NIH for three years, you might already know all this. But here goes... My mom was lucky enough to stay at the family lodge on the NIH campus some visits, but at other times she stayed at the Comfort Inn at Shady Grove in Gaithersburg. It's a 20 to 30 minute drive or about 15 minutes by metro (2 or 3 stops), but you have to take a shuttle from the station to the hotel. Sometimes patients have to be at the hospital very early in the morning for testing, so be sure to plan ahead and don't forget to ask for the NIH rate ($79 per night). http://www.comfortinn.com/ires/en-US/ht ... otel=MD413 There is also a Sleep Inn and a Red Roof Inn near the Comfort Inn. The prices are similar, but my parents say the rooms are not quite as nice. There is a Ramada in Rockville off of Rockville Pike Road. (I can't find the link, but it's near the Hilton). It is closer to the NIH than the Comfort Inn. My mom said she met a patient who receives treatment frequently, so he was able to strike up an $89 per night deal with the manager. Just speak to whomever is in charge and explain your circumstances. They might be willing to do the same for you. Rooms will probably be hard to come by these days because of the cherry blossom festival. Also, this is the time of year when many high school history students take their annual field trips to Washington DC. If your family member is an inpatient, ask a social worker at the NIH if there is space available at the family lodge. It is pretty and clean and right across the street from the clinical center. They have a full kitchen downstairs where you can store and cook your own food. They also have a library, a business center, a small fitness center, and laundry facilities. The place has a real community feel to it, since everyone there has a loved one undergoing testing/treatment. And it's totally free! http://clinicalcenter.nih.gov/familylodge/ I hope this information is helpful. C.J.

Check your inbox. I sent you some info on the metro and places to stay.

Laura, Thank you very much for posting this information. My step-dad has been on so many different drugs that I often get them confused. Unfortunately, he reminded me today that he has already been treated with taxol, which renders him ineligible for the study. Thanks again for posting. Maybe what you shared will be able to help another person on this board. If you hear of any other new trials, please let me know. Like everyone else here, I'm still holding onto hope. I pray this trial is successful for your mother. I am sending lots of healing thoughts your way. You guys will love the NIH. My step-dad has been receiving treatment there for over a year and he can't say enough good things about it. Best of luck to you! C.J.

Just wanted to give ya'll an update. My step-dad decided to take the radiation. He had his first treatment yesterday and will continue it for two weeks. They're only doing his spine, since the mass in his chest is too close to vital organs to mess with. We're hoping this will relieve some of his nerve pain and wobbliness or at least keep it from getting any worse. We know that things are not looking up anymore. In fact, it's looking pretty bad. However, my step-dad remains in good spirits and is even talking about taking a quick trip to China to see the terracotta warriors in Xi'an with my mom. He also wants to visit the Taj Mahal in India. The docs say it's possible, but that we should hurry. (Then again, there are supposed to be some great hospitals in India, right?) In any event, we hope to be shopping for a nice wheelchair and first class airline tickets soon! Wish us luck!!!

Thank you all for your kind words, healing thoughts, and loving prayers. Unfortunately, the topotecan is not working. The scans show a mass in his chest that has doubled in size since six weeks ago. Also, a tumor that was surgically removed from his spine around Christmas time has returned. They're offering him radiation again, but no more chemo. My parents will know more after they talk with the docs tomorrow. I'll update you guys then. For you fellow North Carolinians, my step-dad mentioned a clinical trial in Winston-Salem that he's interested in. At Wake Forest University, maybe? I'm not sure. I'll have to get the details from him. Is anyone familiar with it? He doesn't want to give up yet.

Hi everyone. Well, today my step-dad will find out if the topotecan treatments he's been receiving at the NIH are working. He's done two rounds so far, but they cut his dosage by half on his second treatment due to low blood counts. He says he feels a lot better on the reduced dose, but we are concerned about some new pains he is having in his pelvis and an odd lump that has recently appeared in his abdomen. We're trying to remain hopeful, but the docs say that if the topotecan isn't working, he has no other options available to him for treatment. He's already done carboplatin/etoposide, radiation, and surgery for distant metastasis... as well as two and a half years of clinical trial treatments for his stage IV prostate cancer. He'll have a CT scan and MRI this morning. The docs will meet with him and my mom this afternoon to let them know what the next step is. Please keep him in your thoughts and prayers today. We need all the good thoughts we can get. Thanks a million.

Thanks to everyone for such a warm welcome!

Thank you for the info, Randy! I'm in the Raleigh area, but my step-father (who has extensive SCLC) lives in Fayetteville. He and my mom drive back and forth to the NIH in Bethesda for treatment. I just joined the board, so I'm working hard at catching up on past posts. I'm sure I'll have lots of questions along the way. Thanks for offering your help and support to a fellow Tarheel.

Does anyone know how long it usually takes a drug company to move from in vitro studies to clinical trials?

Hi everyone. My step-father was diagnosed with stage IV prostate cancer almost four years ago. Since then, he's been enrolled in various clinical trials through UNC Hospital and the NIH. Last August, we received devastating news. Not only was he fighting prostate cancer, but spots of SCLC were cropping in his body, also. The prognosis didn't look good, but he remained and still remains positive. Since we were told that the SCLC is extensive and more aggressive than the prostate cancer, he began first line treatment for the SCLC and put his prostate cancer treatment on the back burner. So far, he's received standard chemo and radiation, but the tumors are still growing. This week, he began treatment with Topotecan. We hope he can tolerate it... and that it will work. I'm so glad I found this board. My family is really scared.