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Jackson

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Everything posted by Jackson

  1. 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.
  2. 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.
  3. 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.
  4. 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.
  5. Jackson

    CAV

    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.
  6. Jackson

    CAV

    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.
  7. Jackson

    CAV

    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.
  8. 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.
  9. 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.
  10. 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!
  11. 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.
  12. 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.
  13. 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.
  14. 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.
  15. Jackson

    Magnets

    I thought I would pass this along because I had been looking for something like this for a while. www.choosehope.com now has ribbon shaped magnets in the colors for various cancers that you can put on your car or wherever. The lung cancer ones are white and they say "Lung Cancer Awareness". I ordered a few and had them in two days. You have to go to the "new products" tab on the website to find them.
  16. Thanks Fay and Doctor Joe for posting the articles. Doctor Joe, if you don't mind one more question. Since my mom's cancer may not have started in the lung, do you think there is a chance it is not small cell at all? Seems quite rare for small cell to not be lung cancer. I can't jelp but wonder if it was a complete misdiagnosis.
  17. Thank you so much for responding. We were under the assumption that it probably had started in her liver since that's where there seems to be the most cancer and that is why we linked it to the Zocor. Her doctor never specifically said he thought it started in the liver though. We meet with him on Wednesday so I will ask him where he thinks it may have started and if we can find out.
  18. My Mom was diagnosed with SCLC mets to liver. The tumor on her lung is and always has been very small but there are multiple lesions on her liver. We questioned her onc if this was normal and he said yes. However he has now stated that we cannot be sure the cancer started in her lung, but is definately small cell cancer and would be treated the same. This came about when she was going to do a trial dosage of Topotecan, taking it once a week rather than one week on then two off. She did not qualify for the trial because the cancer may not have started in her lung. My questions are, has anyone heard of small cell liver cancer? I cannot find any information on it. She had stomach discomfort for about two years prior which was diagnosed as acid reflux. Could this have been the cancer? Her onc has said no because of how quickly small cell grows but how can we be sure at this point that it is small cell? Also, she was on the medication Zocor for high cholesterol and was having her liver monitored because of it. She did have high liver enzymes then all of the sudden cancer. We believe the Zocor had something to do with her getting cancer. Could we be right? I know it's alot of questions but I'd appreciate any thoughts anyone has.
  19. My Mom had a blood transfusion last week due to low red counts (she had two units as well). They told her she would notice a difference in her energy level right away, but it took a couple days before she did. She is now going to get Procrit shots every other week to hopefully maintain her red count.
  20. My Mom had this chemo combo. She had some nausea from the cisplatin after her second cycle and after that they gave her better anti-nausea med that she took for two days after the chemo and it worked. As the others said it's important to take the meds before the nausea hits. The CPT-11 is known to cause diarrea and my Mom's onc recommeded she take Immodium AD if she had any problem with that. It's great that he is staying hydrated, that's very important. I think this is a good chemo combo. After the first two cycles my Mom's lung tumor was almost gone and her liver tumors were a lot smaller. They continued to shrink after cycles three and four, so she got six cycles altogether. She would sleep a lot the couple days after chemo and sometimes said her legs felt weak when she went out walking. I don't know about the brain radiation, but no doubt the chemo on top of that could be knocking the crap out of him and making him feel weak. I hope this chemo works for your Dad. Good luck!
  21. Thanks Gail and Alisa for your feedback. We'll be talking to her onc about both the selenium and milk thistle to see if she should take them but he usually isn't too informative when it comes to supplements.
  22. I have been reading the book "Beating Cancer with Nutrition". I know that book has been talked about here before. I am thinking of having my Mom start taking selenium and milk thistle. Is anyone else taking milk thistle while on chemo or know much about it? It is supposed to be good for the liver and since she has liver mets I hope it might help.
  23. Thank you Karen for your response and that's great your Mom is doing so well! My Mom was taking vitamin C and E, and after reading this post a few weeks ago I had her stop taking it. Since then I've read that they are both beneficial. It's so hard to know what's right and I'd hate to have her taking something that could make the chemo less effective. Thanks for your feedback. If you get a chance I'd be interested to know what other supplements your Mom is taking.
  24. I found these articles very interesting. I have a question for anyone that may have some insight though.... this article states Vitamins C and E may increase cancer growth or chance of recurrence. I have read in other places that these are recommended to take and may actually help the chemo work and help with side effects. I'd appreciate any thoughts, insight or opinions anyone may have. Thanks.
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