Jackson
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We have questioned from the time my mom was diagnosed if she does in fact have lung cancer. Her lung tumor was very small and is now gone. The majority of her cancer is in her liver and we believe it has something to do with Zocor that she had been taking. She had discomfort in her stomach area for well over a year which doctor's kept saying was acid reflux but none of the medicines seemed to help much. She smoked until the day of her diagnosis so I've often wondered if the doctor jumped to the conclusion of small cell lung cancer. If the discomfort she was experiencing was the cancer growing in her liver, which we believe it was, it doesn't seem to fit that it could be small cell because they say it grows so fast. My mom has had a second and third opinion and they've all agreed on the diagnosis after reviewing her biopsy. Still we wonder. I also have a comment about AIDS and activism - my mom hasn't been able to get into a clincal trial because her insurance doesn't cover them. I was looking at her policy and they DO cover trials for HIV patients, which there appears to be a law that they have to cover. I find it outrageous that trials for HIV patients are covered but not for cancer patients. I know some states have laws regarding this but not ours. I think getting laws like this passed should be a priority of groups like the ACS because getting people into trials is the key to finding better medicines and a cure. I don't see anything about this when I look at the ACS website.
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I have noticed that most people who get whole brain radiation are prescribed a steroid. Are the steroids something that you should automatically get or do you only get them if you start having side effects from the radiation? My mom started WBR yesterday and she is not on steroids and I wonder if she should be.
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My mom didn't have any problems with topotecan, other than lowered red and white blood counts. She started procrit and neulasta shots that helped. She also had one cycle of the CAV and that made her sick for over a week. The side effects from topotecan were minor compared to the CAV. I hope the topotecan works for your partner.
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Two websites that you can use to find clinical trials are: www.cancer.gov and www.clinicaltrials.gov . They allow you to search by cancer type. Also the American Cancer Society website has a clinical trials link. You can plug in your information and they will call you. I'm sure there are many more resource too. I hope this helps.
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Hi Summer, Sorry your partner had to go through those bad side effects. My mom was mostly very tired and had a little nausea. We were told that the CAV is an older regimen and isn't used as much anymore because it can be harder to tolerate, but since she's already had topotecan this was the next chemo we should try. I hope your partner continues to do well on the carbo/VP16.
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Thank you both for responding. She started the treatment last week and hasn't been feeling too good since. Her dr. did say that one of the drugs can be hard on the heart he will be watching that.
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Does anyone have experience with the three drug combo CAV? This is what my mom is probably going to try next. I'm concerned about the side effects, although she hasn't had much problem with her other chemos. I hope that means she will tolerate this one well too.
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Thanks for posting this. We may be running into a problem with a trial being covered by my mom's insurance and I see that WI is not one of the states with a law requiring it. How frustrating.
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Thank you all for responding. The trial nurse did say that the new drug (G3139) is paid for by the trial, but I think the combo of taxol and carboplatin she will get has to be paid by insurance, and I assume the appointments and scans also. Hopefully we get some answers today. I told her to call her onc today and let him know that this is taking too long.
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Does anyone have experience with getting into clinical trials? We have been waiting almost two weeks - first to see if my mom qualifies for the trial (she does) and now for approval from her insurance company. Someone at the insurance company told her today that they normally don't cover these types of things. Is it typical for insurance to not cover trials? We don't feel like we should be waiting around much longer and should maybe talk to her doctor about starting some other treatment. Thanks!
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Has anyone heard of EO Water? It it supposed to cleanse the system and help the ph balance. I am thinking of getting some for my mom.
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Hi, My mom was having low red counts and now she gets a Procrit shot every other week. Since she's been getting them she has not had any problem with low red counts. I think it helps her energy level a little bit too.
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Thank you. I'll try it.
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Has anyone heard of Mag-3? I read that it is showing promisng results for small cell in studies at Dartmouth and University of Rochester. But I can't find any more information on it. Just wondered if anyone here had heard anything about it.
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Hello Christine, My mom has small cell cancer but she was also given Cisplatin (with Camptosar) as her first line treatment. She did handle it pretty well but we were told that Cisplatin is one of the more difficult chemo drugs to tolerate. My mom is now taking Carboplatin with VP-16. Carboplatin is supposed to work about the same as Cisplatin but be much easier to tolerate. As the others said there are many other chemo drugs out there so just because your mom didn't tolerate Cisplatin well doesn't mean there are no more options.