CJ_in_NC Posted March 17, 2008 Share Posted March 17, 2008 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. Quote Link to comment Share on other sites More sharing options...
RandyW Posted March 17, 2008 Share Posted March 17, 2008 PRayers and Hugs and Positive thoughts from right down the highway in Greensboro NC for great results! Let us know when he gets results! Think Positive Quote Link to comment Share on other sites More sharing options...
ztweb Posted March 17, 2008 Share Posted March 17, 2008 You of course have my prayers....I would say this...if it doesn't go well, and you don't feel like you want to throw in the towel...get other opinions. If he feels good enough to try treatments, he should be allowed to...know what I mean! Blessings and of course my prayers. jen Quote Link to comment Share on other sites More sharing options...
dchurchi Posted March 17, 2008 Share Posted March 17, 2008 Prayers that Topotecan is working. Please keep us posted on scan results Quote Link to comment Share on other sites More sharing options...
CJ_in_NC Posted March 18, 2008 Author Share Posted March 18, 2008 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. Quote Link to comment Share on other sites More sharing options...
CJ_in_NC Posted March 20, 2008 Author Share Posted March 20, 2008 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!!! Quote Link to comment Share on other sites More sharing options...
LauraC Posted March 22, 2008 Share Posted March 22, 2008 Best wishes to you and your stepdad and hope you trip is fun! You had asked about current clinical trials. My mom has SCLC metastacized to the liver and is getting ready to start her fourth line of chemo through a clinical trial at NIH in Bethesda. It will be with taxol and CBT-1. CBT-1 is supposed to block the "pump" that cancer cells may use to pump out the chemo rendering it ineffective. The trial is an "offshoot" of clinical trial NCT00437749. That study says it is for NSCLC, but this trial which has branched off of that one is targeting SCLC and does not use carboplatin. There is no restriction on the number of chemo regimens you have previously done, but you cannot have used taxol before. Good luck to you, Laura Quote Link to comment Share on other sites More sharing options...
CJ_in_NC Posted March 23, 2008 Author Share Posted March 23, 2008 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. Quote Link to comment Share on other sites More sharing options...
LauraC Posted March 26, 2008 Share Posted March 26, 2008 Maybe you can give me a few pointers on hotels in Bethesda! The NIH lists several on their website but the prices are astronomical.....$259 was the cheapest I could find! Is it relatively easy to ride the metro straight to NIH? Do you know of a cheaper hotel in the area? Thanks! Laura Quote Link to comment Share on other sites More sharing options...
CJ_in_NC Posted March 30, 2008 Author Share Posted March 30, 2008 Check your inbox. I sent you some info on the metro and places to stay. Quote Link to comment Share on other sites More sharing options...
Fred Posted March 30, 2008 Share Posted March 30, 2008 Hi CJ, I'm Kasey's husband. If you wouldn't mind sending your hotel information to me I would appreciate it. We have been going to NIH for over 3 years and hotel rates fluctuate so much. The rates seem to depend on the season. They are really high at cherry blossom time which is now. Thanks, Fred Quote Link to comment Share on other sites More sharing options...
CJ_in_NC Posted March 30, 2008 Author Share Posted March 30, 2008 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. Quote Link to comment Share on other sites More sharing options...
Fred Posted March 30, 2008 Share Posted March 30, 2008 Thanks for the information C.J. We usually stay close to NIH due to very early morning starts of Kasey's tests. Getting up REALLY early is not one of her better traits Quote Link to comment Share on other sites More sharing options...
Kasey Posted March 30, 2008 Share Posted March 30, 2008 Well, I DO get up at 5:20 or so to be out the door and there before 7:00! I think that is a truly ungodly time, doesn't everyone???? I must admit though, I am not talking at that time of the morning! We only have a 5 minute drive...........I guess having to get the Metro and all that's involved with that would be cruel and inhumane punishment for poor Fred ! Thanks, CJ, for the info! Kasey Quote Link to comment Share on other sites More sharing options...
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