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LauraC

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  1. 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
  2. I realized I should clarify my post about clinical trials at locations other than NIH. My experience may be totally different from yours and I would still encourage you to contact places such as Johns Hopkins, Duke and MD Anderson to find out any and all possible treatments for you. It is entirely possible that they wanted to meet with her first and get all records way in advance because my mom is looking at 4th line treatment. Plus I also accept the fact that I may just not have spoken with the right person. If you don't get the answers and info you want.....keep on going up the line and don't forget about the "squeaky wheel" phenomenon of course! Laura
  3. My mother had a good experience with amrubicin as a second line chemo for SCLC. Here is the trial number and it is a Phase III trial. You can only have had one prior chemo regimen. NCT00547651 Her experience was that it was far less toxic than the platins and topotecan which she had as a third line. She had a tremendous response to it and was not as sick. She had to be dropped from the study because she caught a cold and missed too many weeks of treatment. As far as my experience with clinical trials, that is one thing you want to know going into it......how many weeks can you miss before you are dropped from the study? If we had known that it was 6 weeks, you can bet that she would have been back in there at 5 weeks getting the drug. We are now getting ready to start another clinical trial involving CBT-1 and taxol. The research is being done because they believe there is a "pump" in cancer cells that pumps out the chemo and keeps the cancer cells healthy. The CBT-1 will prevent the pump from working so hopefully the chemo will get into the cancer cells more effectively. This particular trial is not published since it is an offshoot of another clinical trial. I just happened to find out about it by calling for info about another clinical trial. So, keep that in mind when you are searching for clinical trials. This is with the NIH in Bethesda, MD. Apparently that happens a lot (they have side trials that are not listed on clinicaltrials.gov. The trial that this branched off of is: NCT00437749 which was originally for NSCLC. I will post later about the results. We have our intake appt on April 2 and start treatment on April 4. So far, I have had a wonderful experience with NIH and they are VERY fast in getting you into the trials. In all my research with Johns Hopkins, Duke and MD Anderson, they all want at least 2 weeks to review all your history (which really means 3 weeks since it takes you a week to get all the files up there) and then you meet. And then they make a recommendation for you. And then at least 1-2 weeks later, you can begin a trial. With NIH, we are starting the treatment within 14 days of my first contact. Hope this helps someone, Laura (please read the bio info below for more info).
  4. I haven't posted here in quite a while but thought I would share my mom's experience with amrubicin. (you can read in my profile below a description of her history). Mom had a great response to carboplatin and etoposide the first round and was declared NED after 6 rounds. 8 weeks later with a PET, it was shown to have metastacized to liver. She enrolled in the trial involving amrubicin and you can only enroll in this trial if you have only had one prior chemo regimen. Much less nausea and diarrhea with amrubicin and she didn't require nearly as many platelets and only one transfusion as she did with the platin therapy. With the exception of the week after chemo, she was able to pretty much live a normal life. The amrubicin eradicated all the very small liver lesions and greatly reduced in size the three larger ones. She caught a cold after her 6th treatment and was hospitalized with pneumonia. The dr kept saying, let's just wait and get you better....a few weeks won't matter. So, she waited. She waited 6 weeks and called about setting up her appt for amrubicin the following week. She was informed by the research nurse that she could no longer participate because she had gone past 6 weeks. If she had known that, she would have definitely gone in at 5 weeks. Very maddening. Her dr claimed he did not know there was a limit but who is to blame. There was nothing in the research study info that indicated a max amount of time. Very disappointing since there is no way to purchase the drug at all. And, of course this drug was showing a tremendous response. Anyway, she was put on Topotecan and after two rounds it is growing again. So we are off to our next clinical trial involving Taxol and CBT-1. I will keep you posted on that. The main point of this post is to encourage people to look into this clinical trial using amrubicin. It was far less toxic to the system than the platin drugs or topotecan. And it was working for her. Laura
  5. 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
  6. No anti-nausea drug has helped my mom and I know she has tried several. She actually claims that over the counter Dramamine seems to help more than anything, but nothing is working right now. They prescribed Marinol which has the active component of marijuana and believe it or not, she feels nothing! She is apparently taking a dose that would make most people feel "high" but she feels nothing unusual and it has not helped either. Does anyone have experience with marinol? It doesn't surprise me that it is not helping with the nausea since nothing else is either, but it is surprising that she feels nothing out of the ordinary! I thought that maybe my mom (who claims to have never smoked marijuana) would at least get some positive side effects!
  7. First.....I am so glad to have this board and even though I have been here only a short time, I find all of your posts very helpful. I continue to read lots of archived items almost daily and I am inspired by all of you. My mom who was diagnosed back in early July with limited stage SCLC is now in remission after 2 treatments. She got this good news on Sept 26 on day 3 of her third chemo treatment. Her first two treatments were with cisplatin and etopside but she has since switched to carboplatin because of all the side effects. She was in the hospital for 41 days (on and off but mostly on!) after beginning chemo and there were several days where I didn't think she would live a day longer. Although we are happy to get this news, there of course is a lot of fear because you never know if remission will last. But hopefully it will last forever. Right now, she is too sick to be excited since she has just finished her 3rd round of chemo and is having pretty bad chest pain as a result of the radiation. But we are hoping that by Christmas time after her 4th and last chemo treatment, that she will be feeling better and able to enjoy life a little. She had successful surgery for her arterial leg clot although she will likely have chronic pain and some weakness in that leg/foot for the rest of her life.....probably because they had to prolong having surgery for three weeks due to her low blood count and low clotting. I too have a lot of questions about remission and am curious to know if this is unusual to have such a quick response to chemo. They will do a PET scan at the end of all the chemo and hopefully that will continue the good news as well. Thanks for listening and thanks for all your positive thoughts, Laura
  8. Thanks everyone and I will post separately about my mother's good news of remission. The doctors are right when they say they have to half-kill you to try to get you better. What a hard road.
  9. Thanks everyone for all your feedback and kind words. I have been lurking since July when my mom was diagnosed and just now found the will to post. The MRI scans were negative so no spinal nerve compression. She had some pains which she thought were her heart, but enzymes were normal. They think it is related to pain in her ribs from throwing up so much and from stomach acids from indigestion and chemo stuff. The on call doc wanted to do a DNR order, but her oncologist said no when I called him. He said he thought she still had hope. So, she gave me power of attorney in case she has a heart attack or something else goes horribly wrong. She is resting tonight (Sunday) hopefully and on lots of anti nausea and pain meds (dilaudid). Ate a little ice cream (one Tbs) and about 3 grapes today so that is better than yesterday. But very weak and very out of it because of the pain meds. Hoping tomorrow is better. If she can make it through this, how in the world do we decide if she can handle this awful chemo in 21 days again? The on call dr says prognosis is poor but her oncologist says there is hope for a cure........so many options to weigh regarding quality of life, cure factor and the idea of how low can you go with chemo. Sorry for the rambling, my loving husband made me a pretty strong drink tonight to help calm me a little. Thanks again for all your thoughtfulness. I didn't think we would be facing all this so quickly and only about four weeks after her diagnosis. thanks, Laura
  10. Thanks in advance for any help you can provide. My mom is 66 and was diagnosed with SCLC on July 9. It is limited stage and was characterized by a small spot on her upper left lobe and some involvement with her lymph nodes on one side. All other scans were negative. Started chemo on August 1, 2, 3 with something that starts with an "e" and one of the platins.....carboplatin I think. By the third day, she was vomiting nonstop and was hospitalized on day 5 after chemo due to dehydration. Stayed in hospital for two days. Released but had to return to clinic every day for fluids. Started complaining of leg and foot pain. Foot turned blue and cold in the clinic. Went to hospital and was there for 2.5 weeks due to an arterial blood clot. Could not operate for 2.5 weeks due to low platelets and low hemoglobin. Finally got well enough to operate. Surgery was successful for 4 days but then on the fourth day (her birthday) she lost the pulse in the top of her foot which won't be regained. She has pulses on either side which will probably save her foot, but she will likely live with chronic pain because of the lost pulse in the middle. She went home on Aug 30 and then starts chemo that day at the clinic. That was Wednesday and she has chemo that day and Thursday/Friday. On Thursday night, she starts losing feeling in her legs and becomes somewhat incontinent. On Friday (today), they are concerned that it is more than tiredness and decide to admit her in the hospital again for an MRI. With the little amount of internet research I have been able to do, I am guessing they are worried about spinal nerve compression caused by more cancer. But, my question is how could that be since the other scans were negative? Can any of this (leg weakness and bladder problems) be caused by just plain exhaustion? She is completely wiped out and on IV fluids since she can't hold anything down. Miserable from pain in her foot and now her leg all the way up in the back. She has herniated discs so could that be flaring up as a result of all this trauma perhaps? I just want it to be anything besides cancer in her spinal column. They are doing the MRI tonight (Friday night), so it must be important since it is a holiday weekend. How quickly do you get results back? Anyone have any experience with this? I have a 9 month old and a four year old and I wish I could visit her every day, but she lives about 2 hours away and it is so difficult. But, if this is the end of life or of life as she knows it, I want to do everything possible to be there. I have been going down about every 3-4 days but I guess I wish I could know if we could be getting near the end. If so, I would be there every day. I so love reading all your success stories and I so hope that my mom will be one. I know that this can be cured and I just hate it that my mom is going through all of this. Any ideas of how to help would be appreciated. Thanks, Laura
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