Yorktown Linda

Okay, so after 2 months on the weekly taxotere, I've started to lose my hair. I assume it's the taxotere, since I've been on alimta and avastin (every other week) since May. My alternating diarrhea and constipation are worse. Otherwise, I'm much the same. I get my chemo on Mondays. Tuesday is usually a good day -- will be baking my apple and pumpkin pies this Tuesday. Then I crash on Wednesday and muddle through the rest of the week. I've recently noticed sob -- assume it's the avastin. It's not devastating but I was in NYC last Thursday and I found I couldn't do the subway steps in one pass -- needed to stop and rest on the landings. My CEA is still rising -- now at 80. I know that's not huge, but it's still troublesome. Will have CAT scan soon. I'm not feeling so sanguine about overall survival after the tumor recurred twice, though it seems stable for the moment. My appetite is back and my weight has stabilized, so I guess those are good signs. I'm just starting to feel that if the tumors are growing, or not shriking, maybe I want to take a break from the chemo so I can feel like a human being. I'm hoping for a carribean cruise in the near future. Onc. says not Nov or Dec, maybe Jan or Feb. I'm just so tired of feeling sick and think the chemo is to blame. If I don't have much time left, I want to be able to enjoy it. Anyway, enough rambling! Linda

Nancy, I too suffer from constipation. My internist told me to take Miralax 2 to 3 times a week on a regular basis. So far it seems to be working. Linda

Sandra, Haven't tried it myself -- looking for an excuse to head for the sun -- but Bethesda Skincare makes a sunscreen soap that supposedly leaves a layer of sun protection on your skin. Through their Melanie policy, they will give a free bar to anyone who is suffering from cancer. You can order it through email: store@bethesdaskincare.com (be sure to mention Melanie policy) or visit the website: www.bethesdaskincare.com to read about the soap and other products. Linda

Marci, Sorry you've been going through so much. I've been very lucky (or as lucky as someone with this disease can be.) Just about the time my second surgery was scheduled, my husband's company offered a very generous early retirement package. Since the package included 4 years of medical insurance -- I'm medicare eligible next year -- it was a no-brainer. While Stu may look for some part-time consulting work, he's basically home and looking after me. I can't imagine this burdern falling on my daughters. One is 29 and lives at home with a chronic medical condition. No way she could shoulder my illness also. My other daughter is 26 and has just left the nest. She does come home frequently, and has been here if my husband needed to travel, but I want to watch her spread her wings not tie her to me. Is there anyway you could get a home health aide or visiting nurse for your mom and just get away for a few days to love and refresh yourself? So sorry you have to go through this. Sounds like your aunt is a real selfish b**ch. Doesn't she realize what's going on? Maybe you could write to her, rather than listening to her virtiol on the phone, and just explain what your situation really is. But, then again, if she doesn't want to listen, she won't. Keeping you in my thoughts, Linda

Marci, I have a very good relationship with my oncologist. My very first interaction with him was when I was in the hospital after my first surgery. He ordered an MRI and then phoned me the next day to tell me that he hadn't received the results yet but didn't want me thinking that the results were bad and he wasn't telling me. He gave me his cell phone number so I could call without going through the answering service. When he went to Italy on vacation the day after an infusion, he called me from Italy to see how I was doing. He does the infusions himself, not a nurse, so he's around to talk to while the infusion is going in. My only complaint, and it is a small one, is that he is not very computer literate and I can't email him with something that doesn't seem to merit disturbing him on the phone but that I want an answer to without waiting for my next appointment. I did mention your mom to him (not by name) when you were considering a second opinion and he said he'd be happy to talk with you both. Linda

Jenn, I, too, have NCLC stage IV, diagnosed April '07. I don't have any expereince with spine mets or raidation but I did have a fever after my first chemo -- paraplatin/alimta/avastin. I also had extremely high liver enzymes and blood pressure so low that my doc said it was a wonder I wasn't fainting all over the place! I was hospitalized for 5 days until everything stabelized. They never did find a cause. They think it may have been some underlying infection, possibly from recent lower lobe resection and had me on IV antibiotics but all cultures came back negative. Anyway, this was at the beginning of June. I've been on chemo since with no problem, so who knows. Good luck, Linda

Marci, Alimta is a folic acid antagonist, so I'm getting B-12 shots with it. Can't say that it helps with the fatigue, but then I don't know how I'd be without them. Linda

Marci, I have an excellent oncologist in Mount Kisco. PM me if you want the info. Linda

Shingles can definitely cause a rash. My sister just recovered from it (them?) The sooner you are treated the better -- they can give you some anit-viral meds that really seem to help. If you can't get to your doctor today, go to the ER and say you think you have shingles. Thinking of you and hoping this is resolved quickly and painlessly, Linda

Johnny, I'm just happy when I can eat anything. I have zero appetite and everything tastes funny. That said, fish, chicken and fresh fruit seem to go down best. Guess the body knows what it wants. I am tempted by an occasional cheese danish and relish every mouthful! Linda

Sarah How awful for you. I would definitely check with ADA or other advocacy groups. I believe your boss has to accomodate your illness, perhaps with lighter responsibilities until you're feeling better or some such. I know mine had to do that years ago when I was pregnant. If no luck there, maybe you can appeal to your bosses' boss. I have sadly come to the conclusion that I just can't do my job while fatigued out from the chemo and have decided to retire. Fortunately I am not the main bread-winner in our family, so while we'll have to watch our pennies for a while, we'll be okay. I'm almost 64 so the retirement is not too early. Hope you get some satisfaction, Linda

Thank you Dean!! Just what I needed on this down day. I think I'll just dip into the spirit pool. Linda

Kasey -- Sorry for a late reply. I've been too tired to look at the computer. Yes, blown veins usually recover in a few days. I was on IV rcoephin for lyme disease -- IV everyday for 6 weeks. My dr. advised drinking plenty of water before each treatment -- swells the veins-- and kept a heating pad handy to warm the target vein before the infusion. Seemed to help quite a bit. Linda

Hope, I developed a dry, hacking cough about 3 months after my second surgery. As I was on vacation in Vermont at the time, I just phoned my onc and he called in an antibitoic rx to a local pharmarcy. The coughing get better, but didn't go away, after a day or 2 on the meds but when I got back home, a CAT scan showed 2 new small growths. My onc says they're too small to be causing the cough. Me, I'm not so sure. Sorry, I know this is not the answer you're looking for. But remember -- just because we have lung cancer, it doesn't mean we can't get colds and at least here in the northeast, it is the start of one mean allergy season. Best of luck! Linda

When I was getting my infusuion last Monday, my oncologist and I were trading jokes, some of them maybe dark given the situation. Anyway, I said something about how much humor helps and how hard it must be for him to have a patient who doesn't have a sense of humor. He proceeded to tell me this story: Several years ago he had a patient and she and her husband wanted to know about every possible side-effect before they began chemo. So my onc sat with them in his conference room for over an hour explaining everthing that, to his knowledge, could possibly go wrong. At the end, he added "Of course, you could leave here and get hit by a truck while crossing the street." Wouldn't you know it, the patient was hit by a car while crossing the street the very next day. When my doc visited her in the hospital, she was very indignant, saying "But you said a truck!" Onc swears this is a true story, Linda

Sandy, Your anger is so entirely justified. If it helps you fight the cancer, hold it close. If not, maybe you can let it go. I know --easy for me to say. My cancer was found early, on a routine chest x-ray. But my then dr. is a lyme disease specialist and didn't really seem to care about anything else. She refered me to a surgeon and that was that. No follow-up; no phone call; didn't visit me in the hospital; nothing. The surgeon refered me to an oncologist and he recommended a new primary care doctor. I still get angry when I think of my first doctor -- so much for my advice to let the anger go, huh? Some of these docs really should not be licensed to practice! Sounds like you're a fighter and that should help in the days, months, years to come. I'm rooting for you, Linda

Thanks all. I start on Monday and I'll let you know how it goes. I'm a little worried -- but I breezed through the paraplatin/alimta/avastin and was able to work full-time, so maybe I'll be lucky again. Linda

I've been on paraplatin/avastin/alimta every 2 weeks since the end of May. (Adenocarcinoma, well-differentiated, upper left lobectomy May '07 and morphologically different adenocarconoma, not well-diffferentiated, wedge resection lower left April '08). Recently I've been plagued by a dry, hacking cough. Yesterday's CT scan showed no cause for the cough(started on leavquin, just in case) but 2 new small nodules (3mm) and smaller lymph nodes -- actually nobody noticed the lymph nodes were large and they were not evident on the PET scan in April, but they are definitely smaller than CT scans in April and June. The new nodes explain the graduall increase in CEA - from 19 to 25 to 30 to 37 and now to 45. Anyway, although the lymph nodes are smaller, the new nodules lead my onc to want to switch chemos. He will continue the avastin/alimta every 2 weeks but stop the paraplatin and add taxotere every week. So far I've survived with minor nausea and fatigue and have been able to work, mostly part-time. I'm looking for input on the taxotere. Have you been on this drug? Side effects? Any words to the wise -- or the not-so-wise for that matter? Thanks, as always, Linda

Marianne, I'm no expert but If I were you I'd stay away from Effexor. Before my diagnosis, I was on a very low dose Effexor for hot flashes. At time of my diagnosis, I found myself so removed from my reality that I did not even cry until after I weaned myself from the Effexor. I have since done some reading on the web and it seems that Effexor is a very hard drug to come off of once you've been on it for a while. Both my mother and daughter have had very good results from Lexapro and I think that's what I'll try if I decide to use an anti-depressant. If pain is a problem, Cymbalta is supposed to help with pain as well as depression. Wellbutrin is used to help people stop smoking (if you do) as well as acting as a anti-depressant. My onc has givine me Ativan which is an anti-anxiety med like Xanax but it also helps with nausea from chemo. He says it's a great drug. He has also prescribed Lunesta for the hot flashes. Works great and it's a sleeping pill, so I'm sleeping well too. Certainly some things you may wish to discuss with your doctor. As for living, cancer is depressing! No way around it. Recently had to put my dog to sleep and found myself dreaming about that happening to me. Some days I seem more focused on dying than living. This happens mostly on the days I can't or don't work. I have to force myself to get out and do something, anything! Reading helps too -- especially rereading books I know and love and know that won't just upset me more. Linda

Judy I'm still on the paraplatin/alimta/avastin so I don't know what drug to attribute side effects to. I have recently been plagued by horrible gas pains -- and I'm burping all the time. The paraplatin makes everything taste funny and the only beverage I found that I can tolerate is lemonade. My onc says the combo of lemonade and avastin is causing the gas. He advises staying away from citrus as much as possible. I guess it's always something. Time to look for anothe beverage. Other side effects include terrible back pains the first day. Onc says many of his patients on avastin have reported a feeling of having been sucker punched. The chemo fog is still there. Could be tiredness as I've just returned to work. My blood pressure is all over place. Last night cleaned up the table and washed the dishes. By the end it was 156/105. Sat down and read for half an hour and bp was down to 135/85. Another half hour and it was 120/70. I've been taking it regularly and it certainly rises with any exercise, then quickly returns to normal. I have hypertension anyway and take 3 bp meds. BP never went real high on the chemo; actually I was hospitalized after the first round as my bp was very low --80/50. Anyway, I seem to be tolerating the chemo fairly well and I'll do what I have to fight off this cancer. Linda

I would really love to return to work full-time -- I'm a reference librarian in a public library -- but I'm not sure I'm up to it. I've been working part-time in July and it's pretty tiring. Fortunately my husband has lots ot time off so he's been taking care of the house, shopping, meals, etc. even the dishes as our dishwasher broke last week. This week I'll try full-time and see how it goes. Then I'll be on vacation next week to recover -- some friends have lent us their house in Vermont. I really love what I do -- this is my fourth and final career -- and would hate to give it up. My boss is willing to have me part-time and I can take early retirement if I need to. Luckily money is not an issue. My husband makes a good salary and has just accepted a 4 1/2 year early retirement buyout which includes salary, medical insurance and pension credit. As he is only 60, he doesn't want to retire completely and will probably pick-up some part-time consulting work. I have been on paraplatin/avastin/alimta every 2 weeks since the end of May. I have tolerated it pretty well but it does take a toll. My onc wants to do another 3 months but I may be able to talk him into every 3 weeks instead of 2. That should help. I was driving myself to work when I was part-time but I don't feel ready yet to hit the roads after an 8 hour day. My husband's winding down schedule will allow hime to be my chauffeur (sp?). Anyway, though I have never considerd myself a Type A workaholic, more like a Type Z laid back, lazy person, I really do miss my job -- my colleagues, my customers, the work itself and hope I can keep doing it. Linda

David, My oncologist is the best I could hope for. If you ever move to Westchester County, NY let me know. He also has a practice in NYC. I was introduced to him in the hospital by my first surgeon. My then internist didn't think I needed an oncologist before the surgery. She is an ex-doc as she mostly treats lyme and didn't do much follow-up on my cancer. My onc came to see me every day while I was in the hospital. He said he was going to call Memorial Sloan Kettering (MSKCC) to ask some questions as he doesn't see much lung cancer, mostly breast. He then called me the next day to say that he hadn't reached the man he wanted to speak with but didn't want me to think that he got bad news and was avoiding telling me! The first time I went to his office, my immediate feeling was how calming it was. A lot of thought went into the design and furnishings. My husband and daughter who accompanied me had the same reaction. I saw Dr. Schneider every 3 weeks for over a year without being billed. As I was not on chemo, he said he wasn't treating me and therefore wouldn't bill me. He did spend lots of time with me. He gives me copies of all my blood test results and Cat scans. He also enters them into the computer at MSKCC -- he volunteers there once a week -- and brings me copies of their pathology reports, etc. My second surgery was at MSKCC and he also visited every day. Once I was out of the hospital, he fully discussed his proposed chemo with me, told me what the doctors at MSKCC were saying, and showed me their email interactions. My doctor flew to Italy for a cruise the day after my 3rd chemo. He called me from Italy to make sure I was doing okay! I can't enough about how great he is. Medical knowlege is good and that's what I get from MSKCC -- 2nd surgeon was there and I have consulted their oncologist in person at my dr's suggestion. However, I can't imagine making this journey without my wonderful oncologist. It's not just the medical expertise I need, but also his warmth and caring. I feel like I am a person to him and not just a woman with cancer. Hope you can find someone like that. Linda

4/19/07 spot found on routine chest xray 4/21/07 TB test negative 4/22/07 CAT scan showed 2.5 cm mass in upper left lung; several smaller (>5mm) nodules scattered through all lungs. 5/5/07 PET scan: 2.5 cm only positive finding 5/14/07 Biopsy: adenocarcinoma 5/31/07 Upper left lobotemy; 2 wedge resections on lower left lung. Pathology showed clean margins and lymph nodes; smaller nodules were non-mucinous BAC. 6/6/07 Bone scan and brain MRI both negative 6/29/07 no changes on CAT scan; CEA 2.0 7/29/07 At urging of my oncologist, consulted Dr. Vincent Miller at Memorial Slaon Kettering (expert on BAC). He recommended wait and see. 10/05/07 no changes on CAT scan; CEA 2.5 2/08/08 CAT scan: new small growth lower left; CEA 5.5 3/21/08 CAT scan: same as 2/08 3/24/08 Oncologist wants to consult with Dr. Miller. Thinking about Tarceva 3/26/08 Oncologist says Dr. Miller says surgery or RFA 3/38/08 Saw Dr. Miller -- said mass is 1 cm. As I'm healthy, surgery it is, possibly VATS. Referrals for PET scan and surgical consult. 4/2/08 PET scan; 1 cm tumor lit up 4/9/08 wedge resection scheduled for May 16. Dr Flores (surgeon) says the small nodules are not BAC but are AAH -- precancerous lesions. May not ever grow. 4/18 Stress test, PFT, brain MRI -- both good 4/28 ll wedge resection, pathology shows poorly differentiated adenocarcinoma, morphologically different from previous tumor 5/21 CEA is 19; previous high was 5.5. Onc says it could be due to surgery. Will begin avastin, alimta, paraplatin next week -- every 2 weeks for 3 to 4 months 5/28 avastin, alimta, paraplatin; 5/29 spiked fever; low blood pressure, high liver enzymes 6/4 -- 6/8 hospitalized; drs think alimta caused problems 6/16 2nd round avastin, alimta, paraplatin -- no side effects. 6/30 3rd round, no side effects 7/17 4th round stomach issues, chemo fog 8/6 5th rd. 8/10 develop cough on vacation; started levaquin 8/20 6th round 8/26 CAT scans shows reduced lymph nodes (were never very enlarged as no one notice them before they shrank) and 2 new nodules, one in each lung. Discontinue paraplatin; start taxotere every week; continue alimta and avistan every other week

Judy, I have two different perspectives on the age question. Several years ago (I'm 63 now) I was diagnosed with Lyme disease. I put my fatigue down to my age until my daughter told me that I was too young to be old. Sure enough my energy returned as I completed the antibiotic treatment. My 90 year old mom has CLL (chronic leukemia) whose main symptom is fatigue. Whenever she tells her doctor that she is very tired but guesses that's due to her disease, her doctor replies: "Rose, you're 90. It's natural to be tired." So I gues it could be age but then again... Nothing for it but to stick around and see if it gets better.

Judy, I'm on paraplatin/alimta/avastin every 2 weeks so I don't know what side effects to attribute to which drug. I have recently noticed that I have great difficulty concentrating. I'm usually an avid reader but lately I can't get into a book -- not good for a librarian. I am supposed to be developing a course to teach resume writing and online job searching but I find myself staring blankly at the computer screen. I had something similar right after the surgery but I put that down to the amount of pain killers I was taking. I have 2 more rounds of chemo and then a CAT scan to see what's what. I'm hoping that the chemo fog will lift after that. Linda