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Hebbie

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    Spending time w/ my son and family; making a difference in the fight against lung cancer

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  1. Has anyone experienced hair loss with use of Tarceva? My hair is coming out in bundles.....I started Tarceva in June, but I also have a low thyroid right now that I am in the process of regulating and I'm pretty thin. Not sure what to attribute the hair loss to but wondering if Tarceva is playing a roll. Any thoughts???
  2. Can't sneak anything past you guys, can I???
  3. Hebbie

    Any advice?

    Thank you all so much for your advice/thoughts! I'm still very nervous about the procedure, but the link posted to an article was a wealth of information. To answer a few questions about my diet -- no, it wasn't a cult but some times I joked that it was! I met a group of people all following the same way of eating; many of which, were in fact, cancer patients/survivors -- some who have had tremendous success recovering solely from diet (Janet Vitt comes to mind -- a Stage IV survivor who recovered with no standard treatments, just diet -- she's been cancer free over 10 years and is a delightful and inspirational woman). In any event --I have become close with them over the past two years, sharing potluck monthly dinners, and taking trips together -- they really have become good friends. But, as someone pointed out to me, they are so focused on macro teachings, that they don't want to "lose" one of their own to "the other side". I know I need to do what I think is right for me right now -- and, I think that while macro may be right for some people; and maybe it was right for me for a short while; ultimately, it didn't provide the nutrients I needed and it is time to broaden my diet. With that in mind, and your wonderful words of advice, I have decided to call the nutritionist from my hospital and get set on an appropriate path to try to gain some weight, and hopefully boost my appetite. *In hindsight, I also think that perhaps when I embarked on my Vitamin C Infusion Therapy last fall, that may have done me more harm than good -- my plueral effusion went CRAZY after that, and my weight dropped as well.....live and learn Thank you again for your wonderful advice and concern! ~Heather
  4. Hebbie

    Any advice?

    Hi everyone, it's been a while since I have initiated a post of my own - there are so many new names/faces here (which saddens me), but also many old friends, which is heartwarming. As you can see from my signature, I'm in my third month of Tarceva. So far, so good on the chemo front. However, I've had some pretty rough issues with plueral effusion pain; I've had the fluid drained 3 times now and they are scheduling the talc procedure to perminately seal off that area. I am SO nervous about this procedure and wanted to reach out to anyone out there who has had success with it. They have told me that it has a high success rate in keeping the fluid from coming back, but it will probably NOT do anything about the pain I seem to have in that area (due to inflamation of the lining of the lung). I feel like I have been in a fog of painkillers for the past year. (Motrin, then Percosets; most recently the Fentanyl patch was tried for about 18 hours and I thought I was going to die before I ripped it off my arm -- with my doctor's consent, of course ) I've also struggled with my weight quite a bit. I've been on a strict macrobiotic diet for two years; however, when starting the chemo, my appetite changed and the food was completely unappealing (I always enjoyed it before). I'm pretty skinny at this point (scary skinny if you ask me!) At this point I have fallen off the macro bandwagen and am just trying to follow a "no sugar/no red meat/no dairy/no white carbs rule and eat like a more-or-less normal person. Of course, this is causing a frenzy in my small macro community -- they are even discussing planning an "intervention" for me and telling me that if I go back to my old way of eating, that will be it for me. Can you imagine the pressure??? It's causing all sorts of unexpected stress and second guessing in my life.....I'd like to hear other people's perspectives on diet/cancer. After 4 1/2 years of this rollercoaster ride, you would think I would be some sort of a quazi-expert -- but I'm a mess right now!
  5. I've got one for you -- from my surgeon no less.... At my 3 week follow up from my lobectomy, the surgeon walked into the room and said "Well, 5 of your 12 mediastynal nodes were positive for cancer....that takes you from Stage I to Stage IIIA -and then he followed up with "there is no proof that chemo/radiation at this point will increase your survival either way" - but it doesn't matter because "I got it all" (I wonder how many smug surgeons utter that phrase in their lifetime) ... (This was the same surgeon that seemed irritated that I returned to him almost 2 years later with recurrent nodules in both lungs. He basically told me at that point that I didn't need to follow up with him anymore and to see only my oncologist -- he basically made me feel like I had failed him and he was dismissing me....) Another one that I hear frequently is similar to a few post above -- "OH, I NEVER WOULD HAVE GUESSED HOW SICK YOU ARE -- YOU HAVE SUCH BEAUTIFUL SKIN AND YOUR EYES ARE SO BRIGHT!!". I've learned to follow up with "Well, lung cancer is on the INSIDE".
  6. Hebbie

    Roll Call...

    Checking in, as requested! Things have been pretty up and down, and I must admit that I have been a "lurker" lately around here, not ready to post. I began Tarceva June 1st and my first CT Scan showed 25% reduction in my nodules. Praise the Lord!!! I think of everyone here often and pray for us all! Heather ps -- Ginny -- I may not be heading up the NJ lung cancer walk this year, but it will be taking place -- mark your calendar for NOVEMBER 3, 2007 AT COOPER RIVER PARK!!!!!
  7. Hello everyone! Karen - to answer your question -- Reader's Digest actually found me from a local article featured in The Philadelphia Inquirer newspaper. They were looking for a non-smoker with LC and one of their contacts recalled reading my story...the rest is history! However -- a lot has transpired since I did that interview. Since then, they also sent a video crew to my house to film a segment for a video filled with "inspiring stories" to run in 4,000 hospital/cancer treatment waiting rooms across the country! The article also spawned a trip to Rochester, NY to film an episode of the PBS show "Second Opinion", which will focus on lung cancer and run sometime in October! The media is slowly coming around - let's keep this momentum going!!! Don't be afraid to reach out to your local publications and share your story -- we CAN make a difference!
  8. Hebbie

    Too much pain

    Carleen, Your post has saddened me beyond words. I wish I could offer comfort, but am at a loss for how. The best I can offer is to lift you up in prayer for strength to get through this time. My heart breaks for you, Heather
  9. Hebbie

    Readers Digest

    Thanks for the kind words about the article, everyone! To answer your question as to why they never seem to mention the type of LC, it is because reporters are clueless about details like that. I was very specific with her about what type of cancer I have. I was also very specific with her about my last name (she used my formerly married name, which didn't make my husband all-too happy). I was also VERY clear with her what a tremendous roll macrobiotics has played in my life in the past year and the fact that my scans have been stable for the past six months and my doctor has told me to "keep doing what I am doing" (regarding the diet). None of that made it into the article -- just a brief mention. I believe the media thinks that if they appear to be ENDORSING macrobiotics, or any CAM treatments, they will have some sort of liability because people might shun traditional treatments for alternative (not true -- i believe they go hand in hand....). In any event, after doing several newspaper/tv/radio interviews, I have learned the hard way that they put whatever twist they want on the story to suit their needs and gloss over information that is actually important to the LC community -- but they don't feel is important to the general public. BUT....with all that said, I guess any exposure is good exposure when it comes to LC!
  10. Great article! I actually had a Hypnotherapy session on the Macrobiotic Cruise I went on in February -- it was pretty cool! The hypnotherapist put me into a very relaxed state (not completely "hypnotized", as you would expect) and then she repeated a mantra of sorts to me, "I am healthy....my lungs are completely healthy....I am happy...I love my life....I am powerful....my body has an inner ability to heal", etc. She repeated things like this for about 15 minutes, to sort of burn it into my sub-conscious -- she actually put the whole session on tape for me so I can listen to it at home as often as I like. I feel so relaxed afterwards! Don't know if it's doing anything or not, but it feels good, so I'm going with it!
  11. Well....I just completed an pretty in-depth interview with a journalist for Reader's Digest. The story will be running in their July issue. They are focusing on the non-smoking female w/ LC angle (based on Dana Reeve's recent passing). I was shocked to hear that Reader's Digest has 20 MILLION readers, so that SHOULD be a pretty big forum to spread the word of our need to focus on research and funding!! I DID mention our wonderful website here, I am hoping she puts it in the article. I'll be sure to let you know when it hits the news stands!
  12. What a wonderful article -- very informative!!
  13. I seem to be the minority here...but I am not taking ANY supplements or medications. I am following a strict macrobiotic diet (designed specifically for me by a macrobiotic counselor, based on my lung cancer condition). It basically consist of tons of organic veggies, whole grains, sea veggies and beans. NO dairy or meat (except a once a week white fish). Everything in the diet is designed to nourish the body. If it isn't going to do me any good -- I don't eat it! I've been following it for 10 months and feel GREAT!
  14. In case anyone can't open the link, here it is! I would think the people in my area would be sick of hearing from me....but everytime there is something going on in the LC world, I seem to be their "go to" girl - I GUESS that's a good thing.... Scientists continue to fight unpredictable lung cancer SJ Magazine [email protected] Health reporter Shawn Rhea's column appears Sundays. Sunday, March 12, 2006 This past January, Dana Reeve, wife of late actor Christopher Reeve, sang at the jersey-retirement ceremony for New York Rangers player Mark Messier. Five months into her battle against lung cancer, it would be one of the last times many of Reeve's friends and admirers would see her in public. The performance would be her swan song. On Monday, Reeve, a life-long nonsmoker, died after a short but determined fight against lung cancer. For many, her death highlights the unpredictable nature of cancer and the urgent need for improved methods of early detection. Scientists have yet to develop an effective means of screening for lung cancer in its beginning stages, and since the disease often is asymptomatic, the vast majority of cases aren't caught until the advanced stage. As a result, lung cancer has become the deadliest form of cancer, accounting for 25 percent of all cancer deaths and killing more people annually than colon, breast and prostate cancers combined, according the American Cancer Society. This year alone, 174,470 Americans will be diagnosed with the disease and roughly 162,460 will die. The vast majority will succumb to the disease quickly, with 60 percent of lung cancer patients dying within the first year of diagnosis and 75 percent within two years. Most patients will develop lung cancer as a result of smoking, but, like Reeve, about 15 percent of patients will have never smoked. Heather Saler, 36, is among that patient population. Three years ago, the Mount Laurel resident was shocked to learn she has lung cancer. "I'd never even picked up a cigarette, and like most people I thought, you don't get lung cancer if you don't smoke." As lung cancer patients go, Saler is among the most fortunate patient population because she has survived the disease beyond the typical two-year life expectancy. Her cancer was found before it had an opportunity to spread, but the discovery was a fluke. During an X-ray for unexplained heart palpitations, doctors found a dark spot on her lung. A follow-up CAT scan and biopsy confirmed the spot was cancerous. Saler underwent surgery to remove her tumors, followed by six weeks of simultaneous chemotherapy and radiation. The therapy sent the cancer into remission for nearly two years, but during a CAT scan last year, Saler's oncologist spotted nodules that may signal a return of her lung cancer. "I have about 20 to 40 that are too small to biopsy, so we have to wait and keep an eye on them. I'm not good at waiting," Saler said. Unfortunately for nonsmoking lung cancer patients like Saler and Reeve, being in the dark about their health status is a common and nearly unavoidable situation. They have no clue of the disease because of its lack of symptoms. Cooper University Hospital lung cancer specialist Dr. James Stevenson, who treated Saler, said current studies are looking at whether routine CAT scans could provide a reliable means of early lung cancer detection. If they prove useful, insurance companies should begin covering the costs for screenings. But, the results of those studies are at least three years away, Stevenson said. In the interim, patients' only defenses are being vigilant about assessing their own risks and avoiding exposure to known causes of lung cancer. The lack of definitive information about the causes of lung cancer in nonsmokers is a particular concern for women, because they appear to be more susceptible to the disease than their nonsmoking male counterparts. "It's predominantly a women's phenomenon when you talk about lung cancer in nonsmokers; it's something like 10 to 1 (women to men)," Stevenson explained. "We don't know why, but there is some research that suggests estrogen levels may play a role -- that it interacts with environmental factors and carcinogens." Those findings suggest women need to be particularly aware of individual risk factors such as exposure to second-hand smoke, radon and respiratory pollutants, as well as family history, Stevenson said. And, they should have thorough discussions with their doctors about those risks before choosing birth control methods or hormone replacement therapy, he added. For Saler, who had no history of lung cancer in her family and is unable to pinpoint exposure to a possible cause, accepting the medical world's lack of progress in diagnosing and treating the disease has been challenging. As a result, she along with other lung cancer patients and their supporters have started an annual walk at Cooper River Park in Pennsauken to raise money for research. This past November, the group raised $44,000 to benefit the Lungevity Foundation, an organization funding lung cancer research. "We started our own little fundraiser two years ago, because the federal money isn't there for research and the state tobacco fund is going to pave roads. "I think because so many people equate lung cancer with smoking, nobody's looking for it."
  15. As a non-smoker, I can only guess that she had Non-small cell -- I don't believe that non-smokers get small cell?
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