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AdaW

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Everything posted by AdaW

  1. Dear Andrea, I think it's very important to get second opinions. Like your Mother, my NSCLC had spread to my lymph nodes. I was always told that I could not have surgery, but after a year and a half of managing all the treatments, I became a candidate for surgery. The doctor who performed my surgery is one of the top thoracic surgeons in the country. I don't think just any surgeon could have performed the surgery because the location of my tumor was very close to a major blood vessel. He did a great job and hopefully someday I will look back and say that he saved my life. The following website is a good place to start your search for a second opinion doctor. It's the web address for Comprehensive Cancer Centers (by state) in the US: www.nci.nih.gov/cancercenters/centerslist.html It's best to learn as much as you can about this disease, but don't get overly distraught about statistics. Many good things are happening with lung cancer research and you have every reason to be hopeful for your Mother at this point. There is a new forum on this website call Tips and Hints. You'll find some good information listed there. My heart goes out to you. Your Mom needs your love and care right now and believe me having a loving support system makes all the difference. Sincerely, Ada
  2. Dear RayRoy, I typed "5fu" in my search engine and came up with the following website: http://www.cancerbacup.org.uk/info/fluorouracil.htm It looks like the type of information you need. Ada
  3. Dear Veronica, Would it help you to know that what you are experiencing is a shared experience among many, many, many people with cancer? I cried every day for six months after my diagnosis. I was devastated. I also couldn't talk to anyone on the phone. I just wanted to crawl into a hole and never come out. Eventually, things grew calmer for me. I went on an anti-depressent, Celexa, and through the course of my treatments I just got a hold of myself. This all began for me 21 months ago. What seemed to be a very bleak diagnosis in the beginning has turned out to be what...I don't know. I just know I am still alive after 21 months--and I feel pretty good. At some point along the way, the will to live erupted in me and I just vowed that I would do everything in my power to try to get well. I know that I may not recover from this, but becoming a fighter (instead of passively allowing this to get the better of me emotionally) has made me a much stronger person. Since you are already taking an anti-depressent that doesn't seem to be working, I would call the doctor tomorrow and tell him or her what is going on. I think you need a different medication. Since you are already going to a counselor, I would suggest seeking out a different counselor. Ask the doctor for a referral. Another thought, have you ever kept a journal? Some people feel that journaling helps them to collect their thoughts. Another idea would be to call ALCASE (find phone number on their website: www.alcase.org) and ask for a phone buddy. They match people with similar situations and this is so helpful. I forgot that sometimes chemo causes depression too. You've been through a lot in a very short amount of time. You need to medically attend to the depression so you can get on track physically. Let me know how you are doing. Take care, Ada
  4. Dear RayRoy, I've sort of been holding off saying anything to you about Gemzar. It's supposed to be a "kinder/gentler" chemo, but of all the chemo meds I have had, Gemzar made me the sickest. I don't remember throwing up--I think I have an iron stomach--but 2 days after each infusion, I would run very high fevers--103 for example. I was supposed to get an infusion once a week for three weeks and then have a week off. I never made it to the third week because of low platelet counts. In the end, Gemzar did not shrink my tumor, but I did not have any tumor progression either. Question: Does your Father receive an anti-nausea drug along with his chemo? I've always had this at the time of my chemo. It can be given by infusion or in pill form. This is really critical. I think a lot of people have had success with Gemzar, but your Dad needs to share his negative experience with his oncologist. He or she will help you and your Dad make a good decision about your next step. Thinking of you, Ada
  5. AdaW

    Hair loss

    Dear Tammy, I lost my hair in big clumps when I was on Taxotere. It was so annoying to wake up with hair in my mouth, that I decided to have my head shaved. I went to a hairdresser that specializes in working with cancer survivors. He buzzed and buzzed but left a little on top, so I had some semblance of a hairdo! I never lost 100% of my hair, more like 95%. When my sister and mother saw my shaved head, they started to cry. I never cried though because I knew I had to go through what I was going through in order to get well. I felt that it was a small sacrifice. What helped me the most, when I didn't have much hair, was that my husband kept telling me how cute I looked. He's a saint. His positive comments really really really helped me. I had a good wig, but never liked to wear it. I preferred scarves. When my hair grew back, it came in curly. Now it's wavy and I like it. I always figured I had a lot more to worry about than losing my hair. Hopefully your Mom will be able to focus on the positive side of having little hair--no blow driers, no haircuts, curling irons, perms etc. Every cloud has a silver lining. Take care, Ada
  6. AdaW

    Happy birthday!!!!

    Dear Gianni, Happy Birthday! I am Italian American (maiden name Fiorelli) and wish I knew how to speak Italian, but I do not. The day is almost over, but I'm sending best wishes for your happiness, not only for today, but for the coming year. Sincerely, Ada
  7. Dear Caroline, I am very sorry to hear about your Father and I hope the next few weeks are peaceful for him and for your family. Another organization that is very involved in Lung Cancer education is ALCASE--right in your area of the country. Their web address is www.alcase.org. Thinking of you, Ada
  8. P.S. Veronica, I have found that my oncologists don't like to look down the road too far. When I got up the courage to ask a question like, what happens if this doesn't work, they always told me it would work or we would cross that bridge when we get to it. Your oncolgogist sounds like he went to the same school as mine! Ada
  9. Dear Veronica, When I was first diagnosed, I bought a book (through Amazon) called Lung Cancer, Making Sense of Diagnosis, Treatment and Options by Lorraine Johnston. It has been an excellent resource for me. There are other books on the market now. I'm sure others on the board can give you suggestions. I think you need a good resource to answer some of your questions. ALCASE also has a very good resource. I noticed a copy of it in my oncologist's office. Go to www.alcase.org to find out more about this resource. One of the most important things I have learned since diagnosis is that when a cancer (lung cancer for example) spreads to an organ (the liver for example) you do not have liver cancer, but lung cancer that has metasticised (sp) to the liver. Remember I told you that each person is an individual case? I had a recurrance in August and it was after that (and after "failing" another chemo) that they decided to do surgery on me! It's because it looked like the tumor was contained in my lower right lobe and had spread to only a few lymph nodes. So in a way the recurrance helped them to look at my case differently. I am not a medical person, but I am a person with Stage IIIA Lung Cancer. I feel like I've been through the mill. I feel like you are asking the same exact questions I asked and are feeling the same way I have felt. During the week, when you are thinking about these questions write them down and take them to your next appt. Ask the oncologist or the physician's asst. or your nurse. They'll answer your questions. Of course, I'm giving this advice now. When I was actively getting chemo I was afraid to ask questions because I was afraid of the answers!!!! The big question is "what are my options?" Have you inquired about all the different chemo regimens? If I remember correctly, you were responding really well to your chemo. That's such a plus. The only chemo I ever had any luck with was Taxotere. Have you asked the doctor about Iressa? I think Iressa needs to be a part of your discussion about your treatment plan. Ask more questions. Ada
  10. Dear Barbara, I don't know if this correlates to your case, but I started experiencing shortness of breath (climbing stairs) while I was being treated with Taxotere. I had finished 25 radiation sessions the month before. I always believed the shortness of breath was from a combo of the previous radiation and the chemo. One thing that I did not do and should have done was ask to be evaluated for my oxygen level. In answer to your question about the pulmonologist, yes, why don't you ask for a referral and while there ask to be tested for the O2--it's simple and painless. The oxygen may help your shortness of breath. Barbara, I'm glad you wrote to the board. I know coming to this site has given me a sense of community and friendship. Take care, Ada
  11. Dear Veronica, I did a little research for you. I have a book, America's Top Doctors, that lists top doctors by specialty and region. I didn't find anyone in Columbus or at the Cleveland Clinic specializing in lung cancer surgery in the book. Of course that doesn't mean that there aren't top doctors in this specialty at these locations, it just means that they didn't make it into this particular book. One doctor from Columbus is listed as someone with special expertise in Transplant-Heart, Coronary Artery Surgery: Dr. Robert Michler Ohio State University Med Ctr 410 W 10th Avenue Doan Bldg N847 Columbus, OH 43210 614-935-5502 You might want to call his office and ask who they refer lung cancer patients to. When I first started researching for myself, I came across this book. I think I also typed in "thoracic oncology" in my search engine on the internet. That's when I learned about the University of Pittsburgh Lung Cancer Center. We called and made an appt. for a second opinion with a medical oncologist, Dr. Chandra Belani. I was able to get an appt. within two weeks and because of the way my insurance is set up, I didn't need a referral. I am lucky because my health insurance covers all of this. Also, I keep copies of all of my scans and copies of the reports for my own files. We traveled to Pittsburgh (from Atlanta) and found out I wasn't a candidate for surgery. Eventually though after 1 1/2 years of treatments in Pittsburgh and Atlanta, we were again referred to a thoracic surgeon by Dr. Belani and this time they said they would try to perform the surgery. I had the surgery in January. In Pittsburgh they do a number of procedures for lung cancer patients. They do radiofrequency ablation, cyberknife, and regular surgery and something else that I can't remember. This is not an ad for Pittsburgh by any means. It's a lot easier to see doctors in your own hometown, but it may be worth a trip in order to get a second opinion. Second opinions should be covered by your insurance. I have found that I have to be my own advocate in this. Normally, I am not really very assertive, but I have become much more assertive through all of these experiences. I am fighting for my life and it feels good to take an active role in all of this. Let me know if I have confused you or helped you. I am here to answer any questions you might have. Consider me your cheerleader Veronica. Ada
  12. Dear Veronica, I am not a doctor, but two very reputable medical people told me that patients can have a "complete response" (none of my doctors ever use the term "remission") from chemotherapy treatments without surgery and live a long life. One doctor was an "oncology fellow" working with Dr. Chandra Belani who is a top specialist in NSCLC at the University of Pittsburgh Medical Center. The other doctor is a thoracic surgeon with St. Joseph's hospital in Atlanta. Now, having said that (and believing that) I have often also read that the "cure" for lung cancer is through surgery. The truth is that no doctor really knows what is going to work for a particular patient. After all my experience with doctors and lung cancer and chemo and radiation and having asked the same questions you are asking, my advice would be to seek out a top thoracic surgeon who specializes in lung cancer to get an exact read on your case. I was always told my tumor was inoperable but in the end, it wasn't. I am still recovering from my surgery--they weren't able to take the whole lung or even a lobe. Instead I had a segment of my right lower lobe removed and radioactive seeds implanted. Dr. Rodney Landreneau at the University of Pittsburgh Medical Center performed this very delicate surgery. I go back for a check up in July. Time will tell if this is working. Please take care and keep asking questions. Good Luck, Ada
  13. AdaW

    Quarterly checkup AOK

    Dear Judy, I am so happy to hear your great news! Ada
  14. Dear Idea, The Alcase organization has a phone buddy program that matches people from all over the country. It is great "medicine" to talk to others with lung cancer. Their website will give you the 800 phone number. Ada
  15. This is a reply to the question and post "how bad is chemo." Sorry for doing this incorrectly. Ada
  16. AdaW

    how bad is chemo?

    Dear Lady, I posted my reply to you incorrectly. Please see "my heart goes out to you and your father." Sorry, Ada
  17. Dear Friend, My heart goes out to you and your Father. Sometimes the decisions we are asked to make in life are just too much to bear. This decision has to be up to your Father and you can be there to support his decision either way. It sounds like you need to bring more people in on this than just you and your Dad. Does your Father have a Priest, Minister or Rabbi he could talk to? Or is there a counseling staff at the medical center he goes to? Often social workers can help people with life altering decisions. I think there's a helpful website, cancercare.org, that offers free counseling. Also maybe the people at www.alcase.org could help you. You asked about chemotherapy and its effects. I can only go by my experience with 4 different chemotherapy medicines. It wasn't that bad. (I was 52 and in good health--besides the lung cancer-- when I started chemo.) I was able to manage through treatments without getting very sick except for my last chemo, Gemzar which was not supposed to make me sick, but did! Keep in mind that I believed each chemo would cure me so I was putting up with the discomfort for the greater good. I think if I were told that I had a finite time to live, I could very possibly make different decisions or view everything differently. I will be praying for you and your Father. Throughout my cancer ordeal I have prayed and have been prayed for. Prayer brings me peace and comfort and I hope my prayers help you. Sincerely, Ada
  18. Dear Idea, One of the most important websites for lung cancer survivors and their families is www.alcase.org. You will find a wealth of information there. You sound like you are very caring and involved. In the fight against cancer, it's so important to have a solid and loving support system. Ada
  19. Hi Sam, I have been wondering how you are doing so it was good to read your posts today. I am also on oxygen 24/7 right now. There had been some improvement in my breathing after my surgery, then I developed bronchitis and that's why I need the oxygen again. I'm on a pretty long leash here at home. I can walk everywhere I need to go in our house on one line. It's pretty amazing. I also have a "portable" tank to use when I am out, but I hate lugging that thing around. I am going to look into getting a lighter, more portable Pulse O2 tank if I need to be on oxygen for awhile. Take care Sam, Ada
  20. AdaW

    Radiation necosis

    Dear Patti Ann, I have often said that it takes a lot of courage just to go to the doctor when you have cancer. It's such an emotional roller coaster. I feel very sad about your news and will include you in my prayers. Remember that you are among friends here. I am a deep believer in the power of prayer. Praying for your miracle, Ada
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