Howard Posted March 3, 2003 Share Posted March 3, 2003 My wife, Neomi, was diagnosed with NSCLC on January 6, 2003. She'll be 50 soon. We have children ages 12, 10 and 6. In retrospect, symptoms may have been around 10 or more years and she even had 2 surgeries (spinal cyst, gall bladder removal) for lower right side pain for what I now believe were misdirected efforts to deal with her pain - her 3 cm tumor is in the lower right lung lobe. I realized instantly that the medical profession appears oblivious to early detection of lung cancer. No one even thought to just scan for it. It wasn't on their radar AT ALL! I couldn't believe it. I was shocked by the diagnosis. Neomi wasn't. Neomi has several lung spots, metastases in the lymph system and a bone spot (hip). She was diagnosed only when a superclavicular lymph gland ballooned in just 3 weeks. She had no severe breathing problems, no fluid on her lungs. She finished 2 rounds of Carbo/Taxol and was slated for her third. But the first post-chemo CAT results were disappointing - some spots stayed the same, some grew and there appear to be some new nodules. So, we were switched to Taxotere, half-hour weekly for three weeks and then they'll scan again. Next thing they'll try is Aressa. Fear and sadness abound, but I want to stay focused on are way doing the best we can. Can anyone say if our Chemo regimen makes sense - Carbo/Taxol to Taxotere for now and then probably to Aressa. Can anyone say what specific supplements, herbs, vitamins etc they've taken that really helped. Would anyone please offer any other tips on how to maximize survival. I feel the weight of my family's physical/emotional integrity on me and I need some assurance that we're on a productive path. I want Neomi to be in the percent that survives, but I'm in post first-Scan shock, I'm terrified. I've gathered what the probabilities are from reading here and there but I feel it's pointless to talk survival odds with our doctor (we're at Sloan Kettering). I'm so glad to have found this site. Thanks. And may we all come upon the wisdom and blessings to survive this mess with grace. Quote Link to comment Share on other sites More sharing options...
David P Posted March 3, 2003 Share Posted March 3, 2003 Hello Howard, I'm glad you have found this website too. My name is David and although I'm not the one to give you any advice on your wife's condition, I am here to give you any support I can. I'm saddened by the fact that you need to be here at all, but as you need info, well, this is the place your going to get it - and then some. I've been around 26 years since my left lung was removed, so I'm basically just a cheerleader here. I'm sure you'll find a lot of info that will help your wife, and I hope you and your wife find some comfort here as well. Take care. So long for now, David P. Quote Link to comment Share on other sites More sharing options...
ginnyd Posted March 3, 2003 Share Posted March 3, 2003 Dear Howard, How sad to need us. The first few months after dx are terrifying. I think we all get mixed messages on survival and treatments etc. I don't have any medical info, my husband has not had chemo so far (and hopefully never). Just know that this group of wonderful people are here for you. Most of us know what you are going through. Many also have good medical information or places they recommend where you can get it You will stay in our prayers Quote Link to comment Share on other sites More sharing options...
gail Posted March 3, 2003 Share Posted March 3, 2003 Reaching out for support is so vital to dealing with this. When I had my first dx, I didn't discuss it with anyone, the second, somewhat, but I didn't include my feelings. With the lung cancer, I pulled out all stops and had everyone willing to help around. It is a terrifying time, no doubt. My son was 7 with my first diagnosis. Try to take little baby steps--one thing at a time. You do not have to solve it all today. We're here for to help all we can. After this last cancer, I went on anti-depressents and am seeing a therapist who specializes in cancer. I also take COQ-10. Find a good health food store and talk to them. Hugs to you all Quote Link to comment Share on other sites More sharing options...
mirrell Posted March 3, 2003 Share Posted March 3, 2003 hi howard, i am so sorry you had to find this board. but now that you are here, please join us whenever you can. carbo/taxol is agood first option. i wish my dad had gotten this, but we went with cisplatin and vilborene. the first is sopposed to be very effective. however, if it isn't, taxotere, taken from the bark of the tree is sopposed to be very fast acting. it should help shrink the tumors. iressa is given after two lines of treatment have been given. iressa can work wonders as well. but let us hope the taxotere really helps the shrinkage. it is usually not given over a very very long term-so i hear. how is your wife dealing with the chemo treatments. keep her hydrated and encourage her to eat as much as possible. please let us know how she is doing. also is she getting aredia or zometa for her bone mets. this could help and alot of times you have to ask for it. it will help with stabilization and with pain. awaiting your replly. mirrell Quote Link to comment Share on other sites More sharing options...
Guest Posted March 3, 2003 Share Posted March 3, 2003 Howard, From what I've heard Sloan-Kettering is supposed to be excellent. HOWEVER: Don't ever believe the doctors are gods. Some of them may think they are.... but not true. If you are not comfortable with a doctor, switch. I did and it saved my life. Have more than 1 doctor look at the xrays. Reading films, I found out, is VERY subjective. If your oncologist specializes, make sure that specialization is Lung Cancer. I had a radiatiion oncologist (who specialized in prostate cancer) accidentally radiate my heart! You can bet I fired him ASAP! Also helpful is recording every visit with every doctor. It is surprising what people mis-hear. Mini-recorders are cheap and inobstusive. And remember, none of those dreadful statistics is 0%! Expect your wife to be in the survival percentage no matter what it is. I was told my survival rate was4%! Do whatever it takes to be positive, and get lots of people to pray for your wife. JudyB Quote Link to comment Share on other sites More sharing options...
Ry Posted March 4, 2003 Share Posted March 4, 2003 Starting with Carbo/taxol then going on to taxotere seems to be protocol. My husband had the same however he went to gemzar after taxotere instead of Iressa. Sloan Kettering has an excellent reputation. I am so sorry about your wife, I know how devastating this is for you and your children. To maximize survival, eat healthy, take supplements, everyone has different suggestions but my husband takes flax seed oil, CQ10, vitamin C, multi vitamin, coral calcium, and a few more. Once you start reading and researching you will get an idea. On this board are many other suggestions for juices etc. All the best to you and your family. Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted March 4, 2003 Share Posted March 4, 2003 Howard I highly recommend you take a tape recorder to every - and I mean every - doctor visit. I was shocked at what I "selectively heard" during my visits before tape recording. I have been on both taxol and taxotere and was very fortunate to have my lung tumor shrink. Also, I had radiation which really helped. I have been told at least twice that I was going to be dead in 6 months. But, the power of prayer turned things around for me both times and I am now in remission. Think positive and pray! How is the rest of the family handling this? Sue M Quote Link to comment Share on other sites More sharing options...
Tiny Posted March 4, 2003 Share Posted March 4, 2003 Dear Howard, wife and family, How dreadful that you need to join our board, but there is a lot of love and support to be had here that may help you make it through upcoming trials...even if it is just a place to openly confess your feelings...we've all been there. I'm sorry I don't have advice on the specifics of chemo, but I try to eat lots of vegies and fruit, and drink lots of purified water every day. I also take Flax Seed oil, Coenzyme Q-10, coral calcium, and Selenium in addition to a good multiple vitamin every day. I've also been taking the 2 Tbs. Noni juice (high-quality Morinda type) daily. Does any of this stuff HELP? Who knows???? But I've researched and have tried to make sure that none of it will HURT me in the amounts I am taking. I also make SURE to tell my oncologist about all the supplements I am taking and keep her updated if I make any changes. You and yours will be in my prayers. Quote Link to comment Share on other sites More sharing options...
Don Wood Posted March 4, 2003 Share Posted March 4, 2003 Howard, welcome to the message board! You have many friends here. My wife has NSCLC diag. 10.02. She has 5 bone mets, 3 of which received radiation. Her chemo is similar to your wife's -- carboplatin and taxotere. She started chemo in Nov. but was hospitalized in Dec. for infections. So we had to start over in Feb. and have had one treatment. Keep hopeful and positive. I think the gang here can help you do that. Don Quote Link to comment Share on other sites More sharing options...
Guest Ada Posted March 4, 2003 Share Posted March 4, 2003 Dear Howard, Sloan-Kettering is an outstanding cancer facility and I am so happy your wife is able to be treated there. Dr. Mark Kris, from Sloan-Kettering, is often quoted on the latest findings regarding lung cancer. Even is he is not your wife's oncologist, I am sure she is receiving high quality medical care. I wanted to let you know that I had no luck with Taxol/Carboplatin. I even had 25 radiation treatments concurrently with this regimen and my tumor did not shrink. I then went on Taxotere-1 infusion every three weeks for a total of 3 infusions. My tumor completely shrank and they called it a complete response. I had 6 glorious months and then I had a recurrance, another tumor right next to where the first one was. I then went on Gemzar which did not shrink the tumor and then suddenly I became a candidate for surgery. I am still recovering from the surgery-a segmentectomy with radioactive seeds implanted. Only time will tell if this is the treatment that will work for me. Each one of us with lung cancer is a unique case. Some people have had a great response to the Taxol/Carboplatin and some have not. Just because my tumor recurred after the taxotere doesn't mean that that will happen in your wife's case. I hope the Taxotere works for her. There's always Iressa and so many clinical trials being conducted on new therapies for lung cancer. Believe it or not I had a very good quality of life throughout all of my treatments. I did lose my hair while being treated for taxotere, but it all grew back--curly. It didn't bother me to lose my hair because I thought it was a small price to pay for a possible positive outcome. I am glad you found this board. There's so much hope here. I am thinking and praying for you, your wife and your children. Ada Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted March 4, 2003 Share Posted March 4, 2003 Howard sorry to hear about your wife. My dad actually went in for his chekc up on the 6th of january which is weird and a week later came back with a dx of lung cancer later finding out it is in his bones too. as far as alternative meds. i have been looking into that myself just because i believe in holistic health. I have read somethign about B-17 vitamins. i know in large doses it is not good but some things I have read seem pretty interesting so i suggest maybe a google search on it. also essaic teas?? i have heard some good things about that too although someone said it is tough to drink. I would also maybe ask the doctors about some suggestions cause some are very receptive to alternative methods in conjunction with the chemo and radiation. Quote Link to comment Share on other sites More sharing options...
Tiny Posted March 4, 2003 Share Posted March 4, 2003 Dear Howard, If you are really interested in "Alternative Therapies", be sure to look at all the postings under that heading on the main page. For example, Cary has posted some interesting web-site information for Copper Reduction. See: •Alternative Therapies •Copper Reduction Update •Cary In his last email to me, Cary's dad was doing very well on a chemo regimen coupled with copper reduction therapy, under his doctors' supervision. Praying for your wife and family. Quote Link to comment Share on other sites More sharing options...
Connie B Posted March 5, 2003 Share Posted March 5, 2003 Dear Howard, I too am very sorry you had the need to find us, but you are in the right place. Sloan is a very well known Cancer Center, and people travel from all over the world to get treatments there for lung cancer. But, Judy B is right, Doctor's are not God and you need to pay attention as well. A tape recorder is a MUST! I did that as well. As for Alternative Meds, What ever you decide to do with or without them always but always tell your doctor's first before you start anything. Rule of thumb!! Best wishes to you and Neomi. Keep us posted and keep asking questions. Warm and Gentle Hugs, Quote Link to comment Share on other sites More sharing options...
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