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KaytieP

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  1. Hope everything is OK with your dad. From personal experience, it is possible to have bronchitis for over two months. Last year, I had a bad case of bronchitis (laryngitis for two weeks, coughing so hard I couldn't sleep) from Labor Day until after Halloween. My mom (who has lung cancer) was so convinced I had pneumonia that I finally ended up going to the doctor at the end of September. There wasn't anything he could do, and it eventually did go away. My doctor said (and I confirmed through Dr. Google) that bronchitis nearly never responds to antibiotics. Hopefully that eases your mind a little (not that your dad shouldn't go back to the doctor and make sure it's nothing).
  2. KaytieP

    Taking a break

    Meeshy - My mom took several week-two week breaks with no progression. I think it just really depends on the person. Is she still on 150 mgs? A lot of people have dropped down to 100 mgs for long periods of time with good results (and much less severe symptoms). If she is down to 100 mgs and still having severe side effects, it might be worth talking to the onc about a break. Anecdotally, when my mom went off Tarceva entirley (because of some moderate progression) there wasn't a whole lot of progression before she started her third-line treatment. I think she was on no treatments whatsoever for 5-6 weeks. Again, YMMV.
  3. The bottom line is that she has to meet the study participant qualifications to even consider it. If you call the study coordinator, they're usually very helpful in evlauating if she would be a candidate. I ddin't read the protocols closely, but it looks like they require stable disease for a period of time. However, calling now is probably a good idea, as any future treatments (beyond first line chemo) may affect her eligibility. Beyond that, there are treatments on the market that she can try if the chemo doesn't knock the cancer totally out. Tarceva and Avastin are being used more and more as maintenance therapies, as well as therapies after some progression. They are not like platinum-based therapies, in that they can be given basically until the disease progresses.
  4. KaytieP

    Pink Month

    "BUT I want to find out how the SGKF got off the ground and what type of marketing geniuses they have worked with for the past couple of years." Susan G. Komen was founded by Susan's sister, Nancy Brinker. Nancy's husband is Norman Brinker, head of Brinker International, which is/was the parent company of Chili's, Macaroni Grill, Steak & Ale, etc. I also believe they were acquaintances of George HW Bush before he became vice president. In other words, she had millions of dollars and connections with people in the highest levels of business and government. Also, breast cancer has a built-in advocacy group. Because of the work of organizations (mainly SGKF), breast cancer is seen as a women's issue. Not only non-affected women, but also men, are encouraged to "support women" "think of your wife and your daughter" etc. Because women are generally the primary shoppers in their families, companies are more than happy to contribute a few dollars if slapping a pink label on something increases the chances a women will buy it. Likewise, gay people are willing and eager to fight for AIDS research funding, regardless of their HIV status. There have been huge advances/huge funding in children's cancers, because people are natually sympathetic to that cause. As we all know, a disease where 70-85% of it's victims smoked is guaranteed to generate nearly no sympathy. There is a reason the American Cancer Society and American Lung Association are reticent to support lc beyond anti-smoking campaigns. "Breast cancer may get their first, but it will benefit us all, don't you think." Probably an oversimplification, but to be blunt, no. I wish I had my book with the stats in it (buried in a box in storage), but there have been comparisons between the 5 year survival rate fairly recently (2000ish) with the survival rate when Nixon declared the "war on cancer". Breast cancer survival rates are 30-40% higher. Lung cancer rates are maybe 4-6% higher (the lowest increase by far, if I remember correctly). Granted, this was before the widespread use of Tarceva and Avastin, but considering probably less than 5% of lc patients are long-term (>4 years) responders, they are not going to push the survival rate up a tremendous amount. That probably sounds more dire than a post on a lc support site should, but I think it is very dangerous (from an advocacy point of view) to even imply lung cancer benefits measurably from cancer funding in general, because that assumption has failed lc patients miserably.
  5. Marci - From your timeline, it looks like your mom is on Carbo/Gemzar, and has only had two treatments so far. The onc may just want to wait and see how it works, as usually 4-6 rounds of chemo are given, with scans in the middle to see how things are going. Tarceva isn't given with chemos (outside of a clinical trial), so that wouldn't be an option for her right now. Also, it it is a second line drug. My mom (not Asian) is a never-smoker, and she was given Carbo/Gemzar to start. I could see why Tarceva would be kept for later, as generally it is more tolerable, and easier on patients who have been on treatments for a while. Also, it is sometimes used as maintenance for peopel who have been stabilized on traditional chemo. Despite that, a second opinion would certainly be a good idea. Her current treatment may turn out great, but (from personal experience) it is a lot less stressful getting a second opinion if you are not in "we must do something RIGHT NOW" mode.
  6. Hi Michelle - My mom was on Tarceva/Avastin for about 18 months. She was taking 150 mgs for a year, but then started experiencing severe IBS symptoms like your mom. Her doctor said it was fine to stop taking the drug for 3 days or even a week to let the body bounce back. That really helped for a while. Eventually, she did have to drop to 100 mgs and then 50 mgs. All the side effects disappeared at 50 mgs. Unfortunately, she did progress, but she was stable on 50 mgs for several months, and none of the oncs she has seen (and she has seen five) thinks the progression has anything to do with the dosage reduction.
  7. Judy - For what it's worth, when my mom was on Avastin/Tarceva, she had to take a six week break because she had a rotator cuff tear and was contemplating surgery (i.e., couldn't be on a bloog thinner like Avastin). Six weeks didn't phase her onc, study nurse, or the people who were actually running the reasearch study. Obviously she was still on the Tarceva, but the people who were actually running the research study seemed to think it was minor enough change in protocol that it was no problem keeping her on the study.
  8. To follow up on the "children who have lost their parents too soon" post. First of all, this should probably be filed under Anticipatory Grief, Subset-Rage, so I'm not sure if this is the right category, but I don't think Family & Caregivers is the appropriate place, either. Fortunately, my mother is still here, nearly two years after diagnosis. However, she has just failed second line treatment, and I've found I'm feeling the grief that I did when she was first diagnosed, with a lot of extra RAGE! thrown in. Aside from the obvious fact that lung cancer sucks, it's very isolating being an adult, but someone who is considerably younger than most people who are dealing with their parents' life-threatening illnesses (not on this board, but in everyday life). I'm still at an age where people take their parents very much for granted. I often hear friends and coworkers complaining about their parents being too intrusive, indulging the grandkids too much , or buying insufficient gifts for their birthday. When the subject of losing parents early comes up (from myself, in the news, from an older friend/co-worker, etc.), I've heard so many of my friends respond with, "Wow, I'm so sorry for your loss. I would be devastated. I'm so lucky my parents have excellent genes for longevity, so I won't have to deal with that for a long time." My mother never smoked and had 3 of 4 grandparents live into their 90s. Do you think anybody expected her to be diagnosed with Stage IIIb lung cancer at 59? And if they did, would it make the reality of the diagnosis less painful? I'm not sure why that one makes my insane, but it does. One of the most painful parts of this disease, for me, is seeing and realizing what it is cheating both of my parents out of. Neither will get to have a "normal" retirement. Their friends and siblings are at an age where they are retiring or slowing down at work, and traveling, playing golf, buying RVs, etc. My parents have gone nowhere - earlier because no one wanted to plan too far ahead, now also because the heavy-duty treatments my mother has been on for two years has taken a toll (luckily she's never been sick or hospitalized, but she moves like she's 80). They were finally at the point where they were financially somewhat comfortable at the time of mom's diagnosis, and have made no major purchases since. Part of that is my mom being disability with astronomical medical costs, but also there is the uncertainty. My sister's children, who my mother takes so much joy in, are so young that they will have no memory of her. My father, who got married at 22 and has never really lived alone his whole life, will be a widower in his early 60s. And aside from that, it is Pink Ribbon Time (which, I have noticed, now actually starts the month before Breast Cancer Awareness Month). Gah, too long of a rant. I know many of you have similar stories, and many have even more challenging situations, but I just had to vent. There are few places in "real life" where so many people understand.
  9. Johnny- I agree with everybody else. A lot of misinformation is out there re: the sugar issue. It was actually my mother's psychologist at the cancer center that first mentioned to her that sugar can fuel cancer. Mom's onc quickly dispused the real-life applications of that theory. I really would be hesitant to do what you propose with Avastin and diet.I would be leery of exposing her to the side effects of a more-than-longshot treatment that she has already progressed on. Also, I would be really worried that restricting red meat and sugar would also restrict her calories. At this point, keeping on the pounds is probably more beneficial than trying to starve the cancer through sugar restriction.
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