bev

Marianne, welcome to the best support group you could hope for. My wife, Bev, was diagnosed with SCLC-Limited in Sept./04. She is doing very well right now. It is scary, but you can get through it and carry on. I hope you can take some solace in the success stories of the awesome fighters on this board. Best Wishes, Kim

I just need to add that to all who have been or are still smokers to get a yearly ct scan. It will catch the cancer in it earliest stage before there are any symptoms. If you are having any symptoms a ct scan is what you will need not an xray. An xray will miss what a ct scan will show. I am not a doctor but have learned alot from going thru this. I was a smoker for many years and was afraid that I might get Lung Cancer. I saw Claudia Henske book Lung Cancer. After reading it I took her advice and started getting yearly CT scans. On my 3rd year of getting them, a small spot showed up on my right upper lung.I am thankful to still be here with my family. I hope this will inspire other to do the same. Take care of yourself. Bev

Hi Rochelle.. MY doctors from the beginning have used both the ct and the pet scans. They each have different purposes. The pet scan will light up in the areas that cancer is growing. That is how it was with me. For 2 years I was getting pet and ct every 3 months. Altough the pet is very expensive It has been a great comfort that my doctor has ordered these test for me. These 2 test combined do a check and balance on each other. Also I am luckey in that my insurance will cover these test.Other wise I dont know if I could afford them. I am now at the point that I will be getting a ct every 4 months and a pet every 6 months.So far all is ned. I have had the pet light up a couple of times since but they ruled out cancer saying it is just at the site of the lobectomey. I am as you could guess lucky and happy to still be here with my family. I hope this has helped you in some way. Take care Bev

Bev’s Story as told by Kim. On September 3, 2004, at the age of 48, Bev was diagnosed with SCLC. But her story actually begins years before. In her early 40’s, Bev began to experience various vague symptoms which, ultimately, turned out to be peri-menopausal, but got her into the doctor’s office often. They did a variety of tests, blood work, stress tests etc., but nothing came of it. They did caution her on the overall health of her lungs, as she had been a smoker since her teens. She eventually developed a case of pneumonia that required a brief hospital stay. A few years later, after a bout with walking pneumonia and more warnings on her lung health, she started to worry about the possibility of developing lung cancer. Every little ache and pain had her wondering. Bev decided to research lung cancer at the local library. She found a book called "Lung Cancer- Myths, Facts, Choices- and Hope" by Dr. Claudia Henschke and Peggy McCarthy. One of the interesting ideas that Dr. Henschke was investigating was the use of CT scans as a screening tool for Lung Cancer. Armed with this information, Bev went to her PCP and requested that she get one. Her PCP agreed (Thank You, Dr. Keeler!) and she had it done. It showed nothing. A year later in 2003, she had a second CT scan. Nothing. In the Summer of 2004, when she told me it was time for her annual scan, I remember thinking to myself she’s fine, there’s nothing wrong but I wasn’t going to argue with her. This time, they found something. A subsequent PET scan revealed what was probably a 1.5cm tumor in her upper right lobe. We had entered the nightmare. The pulmonologist was bleak and referred us to a surgeon. He was the one who rallied our spirits into fighting this. There were some raised eyebrows when we told them how the scans came about. He said “You’ve really opened up a can of worms”, as the “tumor” was so small the only way to biopsy it would be to do a wedge resection. It could be cancer or it could be benign. He said we could wait 3 months and see if it had changed or do a resection. What did we want to do? We weren’t ready for that question. After a minute or so with our heads swimming, Bev said “Take it out.” The wedge resection was done, biopsied as a carcinoid tumor and, importantly, a lobectomy was done. Two weeks later on our follow-up visit we were told that a further biopsy determined that it was Small Cell Lung Cancer with several lymph nodes positive. Final diagnosis- SCLC limited. We don’t have to explain to you our feelings at this point but eventually we were able to focus on the “good” points. Early detection, surgery, Bev’s strength and determination to use every weapon in the book and to fight it to the end. She did not want to leave her children. Treatment consisted of Carboplatin, VP16, 35 rounds of radiation to her chest and finally PCI. I was in awe of her bravery and determination. The only bump in the road was an inept installation of a portacath which landed her in the hospital with a collapsed lung for 11 days, in a lot of pain and during Christmas, which she was worried at the time, might be her last. We brought everything but the tree up to her room on Christmas Day. The kids said it was the best Christmas they ever had. By March of 2005, she had completed all treatment and the scans began. Yesterday we got the results of her latest PET scan, the same as every scan since she completed treatment: NED To all of you in the battle- While Bev’s circumstances are unique, the treatments can work. Keep The Faith!

Hi Rochelle, I wanted to respond to you about the effects of PCI. I was taking steroids to reduce the brain swelling.Which made me very hungry and full of energy in the beginning, but as the does lessend as it is suppose to . I would be very tired at times, also very nauses. I would have to make sure that I had crackers or something with me .It has been a year since I finished with PCI. I feel pretty good but there are still times when I get fatigued. And I think that PCI has effected my short term memory. But that could just be my aging. Any way I am thankfull that I had all of the treatments. So far I am cancer free. Tell your mom to hang in there, it will get better. I hope I have been a help . Take care Bev

I have just completed another 3 month pet and ct scans. Do not have any results back yet. I am feeling great, so I am trying not to worry. I should know by the end of the week the results. If all is still clear I will think about getting my port removed. Doc says if all is clear I will go to 4month cts and 6 month pet scans. Doc. says that if clean for 3 years I can consider myself cured.But feels that I am 80% there. I'll let you know how I do on my recent test. And I also need to update my profile. Talk to you soon. Bev

http://www.nytimes.com/2005/06/22/healt ... ancer.html Chemotherapy Research Leads to Shifts in Lung Cancer Treatment By DENISE GRADY Published: June 22, 2005 For the first time in decades, doctors have begun making major changes in the treatment of lung cancer, based on research proving that chemotherapy can significantly lengthen life in many patients in whom it was previously thought to be useless. The shift in care applies to about 50,000 people a year in the United States who have early cases of the most common form of the disease, non-small-cell lung cancer, and whose tumors are removed by surgery. Many of these patients, who just a few years ago would have been treated with surgery alone, are now being now given chemotherapy as well, just as it is routinely given after surgery for breast or colon cancer. The new approach has brightened a picture that was often bleak. "The benefit is at least as good, and maybe better than in the other cancers," said Dr. John Minna, a lung cancer expert and research director at the University of Texas Southwestern Medical Center in Dallas. He said new discoveries were helping to eliminate doctors' "nihilistic" attitudes about chemotherapy for lung cancer. "The standard of care has changed," said Dr. Christopher G. Azzoli, a lung cancer specialist at Memorial Sloan-Kettering Cancer Center in New York. A major impetus for the change came a year ago, when two studies presented at a cancer conference showed marked increases in survival in patients who received adjuvant chemotherapy, meaning the drugs were given after surgery. In one study of 482 patients in Canada and the United States, led by Dr. Timothy Winton, a surgeon from the University of Alberta, 69 percent of patients who had surgery and chemotherapy were still alive five years later, as compared to only 54 percent who had only surgery. The patients were given a combination of two drugs, cisplatin and vinorelbine, once a week for 16 weeks. In the world of lung cancer research, a survival difference of 15 percentage points is enormous. Over all, the patients given chemotherapy lived 94 months, versus 73 months in those who had only surgery - also a huge difference in a field in which a treatment is hailed as a success if it gives patients even three or four extra months. A second study, also announced at the conference last year, had similar findings, and so did a third, presented just a month ago at the annual meeting of the same cancer group, the American Society of Clinical Oncology. At major medical centers, doctors quickly began to put the results into practice. "The findings were so stunning from these studies a year ago that they began to change the standard of care," said Dr. Pasi Janne, a lung cancer specialist at the Dana Farber Cancer Institute in Boston. "Over the last year, the number of patients we've had referred here for adjuvant chemotherapy has gone up steadily." But some doctors hesitated to make changes, Dr. Winton said, wanting first to see the studies published in a medical journal, which would mean the data had stood up to the scrutiny of editors and expert reviewers. Now, his study has become the first of the three to pass that test. It is being published Thursday in The New England Journal of Medicine, along with an editorial by Dr. Katherine M. S. Pisters, a lung cancer specialist at the M. D. Anderson Cancer Center in Houston. Dr. Pisters wrote that Dr. Winton's results were "astonishing," had "tremendous implications" and would end the controversy that had existed about whether chemotherapy could help people with lung cancer. "There was a remarkable improvement in survival," she said in a telephone interview, adding that lung cancer experts had never seen anything like it before. "No question, the debate is over." Patients in the study did suffer from side effects, including lowered blood counts, fatigue, nausea, vomiting, nerve damage and constipation. Generally, the reactions were not severe, though two patients (0.8 percent) died from toxic effects - not an unexpected finding with the powerful drugs used to treat cancer. Dr. Pisters said that the oncology society and the American College of Chest Physicians were both rewriting their formal guidelines to say chemotherapy should be given after surgery for early-stage lung tumors like the ones in the studies. She and Dr. Azzoli said that although medical oncologists, the cancer doctors who prescribe chemotherapy, knew about the lung-cancer findings, surgeons and internists may not have heard about or accepted them. Dr. Azzoli said: "We also want the surgeons to be aware of this data, because they are the ones who need to refer patients to the medical oncologists. Until this point, they would not necessarily refer people. Now, they have to." Worldwide, lung cancer is the most common cancer and the leading cause of cancer death, with more than a million new cases and a million deaths every year. In the United States, it is expected to kill 163,510 people this year - more than breast, prostate, colon cancer and leukemia combined. Nearly all the cases are caused by smoking. From 80 percent to 85 percent of lung cancers are the type that Dr. Winton studied, non-small-cell cancers. His findings apply to 25 percent to 30 percent of newly diagnosed cases, those that can be removed surgically and are at an early point in the disease classified as stage IB or stage II. With surgery alone, five-year survival ranges from 23 percent to 67 percent, depending on the size of the tumor and how much it has begun to spread, according to Dr. Pisters. From the 1960's through the mid-1990's, efforts to better the odds with chemotherapy failed. Not only did the drugs not help, they sometimes hurt, actually shortening patients' live instead of extending them. So for many years, patients with early tumors were advised to have surgery and no other treatment. Many relapsed and died. Chemotherapy for advanced lung cancer can slow the disease a bit, but not cure it. But new chemotherapy drugs were being introduced, along with better medicines for side effects, like nausea and low blood counts. Dr. Winton began his study in 1994. It was paid for by the governments of Canada and the United States, and by GlaxoSmithKline, which makes vinorelbine. Dr. Winton said the company did not write or edit the report on the study or control the data in any way. The two drugs fight cancer in different ways. Dr. Winton said: "It's a collective attack on two different components of cell division and growth that has made this doublet effective in this disease." The entire treatment costs $4,500 in Canadian dollars, $3,646 in the United States, he said. Other drug combinations can also be used, Dr. Pisters said, as long as one is a platinum-based drug like cisplatin or carboplatin.

You two have been thru so much. This is most deserving news for you. Keep on posting , Love to see you two so cozey on the couch. Bev

No, I don't have a pet cat named Ned, but my scans did come back clear! All of you in this family have given me hope and inspiration. This truly is a wondrous support community. It's hard to sit down and put my two cents in, sometimes, but every day I need to look at the threads that make up this amazing tapestry. Thanks, Bev

I finished up my PCI on march 14,I am still having some side effects. I was doing pretty good,just getting some fatigue, and brain fog. But this week it really hit me hard. I started to feel extremely fatigued,nauseas the thought of food is sickening.I was also feeling very woozy. I saw my oncologist yesterday, checked my blood. Said I was only 1 point down on my red cell count from the last time I was checked. They gave me a shot of aranesp. Thought that might help, and I have to say that I think that it has, I am not as fatigued as yesterday, but still not able to go to work. And the nausea is still there and cannot eat. Has anyone else had these symptoms so long after treatment? I thought that each day you would get better, not have any backslides. I am having my 3 month ct scan next week then my pet scan. If there is anything going on it will show up. But for now not sure how to handle this setback for me. I feel I must shake this I have to get back to work. Any suggestions? Thanks Bev

I too have pain in my back it comes and goes depending on what I am doing. Also have numbness on my right side from the operation. Also breathing deep I feel discomfort, I am thinking this is because of the radiation I had. I had PCI which ended on march 14, which was 2 months ago, still feel some fatigue from that, It feels like I am in a fog and I need to snap out of it, I hope this to will go away with time. But I am really starting to worry that my hair will not come back. I am still bald as a baby. Anyone know how long it will be before I see any signs of life up there? One more worrie I have, I had a pap test last month which came back funny. My doctor said I need to have a Coloscoepy(not sure if that is the right spelling)done. So I went to a specialist who she recomended. This doctor says that on my pap test there was no signs of HPV(I think that was the name)and that I should wait 4 months and have the pap done again. They said that sometimes chemo can alter the cells some to give you a bad pap result. And without the HPV showing up I need not worry. My oncologist agreed.But I feel some cramping in my adomen sometimes and wonder what is causing it. Probably just me thinking about it too much. Any input would be most helpful. You are all so brave. Bev

Hi Joanie, Thanks for staying on board with us and giving such hope that we can do it also. Keep it going, and have some fun. Take care, Bev

Hi Joanie, Love to hear your good news!!! You give us all hope. And I am also thankful that you have stayed with this site so long. I will try to do the same, If I am to be so blessed. Something has been nagging at me since I was diagnosed. After my follow up visit with my surgeon. Which was at the North Shore Univ. Hospital, Manhasset,N.Y. He suggested that I see there on staff oncologist, just to fill me in on what to expect for my treatment. And she was most inssistant on my getting cisplatin and not carboplatin. She said it was much harsher with the side effects, but that since I was young and in good health otherwise that I could handle it. She felt that cisplatin was a much more effective drug and she also said that I have only a small window of time to cure this disease. But when I went to my oncologist and explained this to him, he suggested that I stay with carbopaltin. He even got a print out of a comparison of the two drugs. Where it said that the two were effective in treating the disease but that cisplatin was much harder on the body with the side effects. He said that he would give it to me if I wanted it but that he felt carboplatin would work just as well without the harder side effect. So in the back of my mind this has been something that I am not sure if I did the right thing. Did you have the choice of which drug to go with? Or does anyone else have any thoughts on this? Joanie treat youself in some way, you deserve it. Take care Bev.

Hi Dennis, I can really understand your wifes fears, I too developed an irrational fear of all of the testing and procedures that I had done. The MRI was the one that started it for me, Had I known that it would be so scary I surely would have taken something to calm me down.So when I started my radiation treatments I asked the docter to prescribe something for me, so I took ativan before each treatment. I never felt drugged in any way but I never had a panic attack during any of the procedures. If I ever have to have another MRI I would bring my own night mask for my eyes. I was told I could but to make sure it was only made of cloth no metal or beeds. I wanted to keep my eyes shut and I did but of course my irrational fear kept telling me to open them, so I feel if they were covered It wouldnt matter if I opened them. I tried to do all of this with just breathing techniques and visualization, but then I said why should I suffer any more than I have to. The pills really made my life so much easier. I do want to say that my docters told me that an open MRI is not as good as an enclosed one, so I decided to get the best info I could and did the enclosed. I have just finished up with my PCI treatments . I found the pills to be most helpful wih this treatment, as this can also be scary. The actual time spent on the table is maybe 5 minutes, but the pills make it ok to handle. I found the PET scan to be one of the easier test to have. It last about 45 minutes but you are not enclosed in anyway, and they play relaxing music.But I took a pill anyway just so I did not have to worry about it at all. I hope this helps your wife, she can get thru this. Sounds like you are a very loving and caring husband, as mine is which will also get her thru all of this. Take care. Bev

Thanks for all your input. I am not so worried about the symptoms now. Today I woke up feeling better than the last 2 days, Im sure it was because I had no treatments over the weekend. Well I had my last one today. And yes over the weekend what was left of my hair all fell out except for one thick patch on the back of my head. It looks really weird, I think I'll keep it for a while then shave my whole head when the tenderness goes away. Start fresh with a clean head. I had asked the nurse at the radiaton center if my nausea could be caused from the radiation, she didnt think so but anything could be possible. So I am glad to hear that others have also had the same symptoms. So I am done with all treatments for now. Next ct in May. I am so looking forward to going back to work April 1st. Also spring is coming to warm our weary bones.. Wish you all the best thanks Bev