recce101

Simpatico here, Rich! Aloha, Ned

Congratulations, Carol! Aloha, Ned

It's great practice for multitasking, something my 72-year-old chemo-enhanced brain has trouble with these days. Trying to keep track of a couple of other discussions scrolling off the screen interspersed with the one I'm currently in may be frustrating, but probably beneficial. My wife plays the latest video games to stay sharp, but I'm not quite there. Aloha, Ned

Hi again, Linda: I usually check OncTalk before logging in here, and I saw Dr. West's response to your request for his thoughts on your mom's CT scan. I recall a few weeks ago when someone had a similar request, and he provided some general information but expressed the concern that he was getting very close to the line on "providing medical advice" or replacing "the medical advice of your doctor or health care professional" (bottom banner of the OncTalk opening page). Add to that the fact that a radiologist's scan report has limited value except in combination with other information including direct examination of the patient, and I think Dr. West felt he simply had to stop doing this sort of thing. Knowing him as many of us do, it was clearly painful for him to have to turn you down, and I know he's serious when he says he owes you one or several. After you've talked to your mom's doctor about the report, and possibly after a test such as the recommended transbronchial biopsy has been done, I'm sure he'd appreciate the opportunity to answer any questions that can be framed so that they apply to more than one person. Example: "In a patient such as my mom with evidence of advanced centrilobular emphysema, are there any special considerations when it comes to choosing a course of treatment?" Please realize that's just an example off the top of my head and I really don't know anything about emphysema. Aloha, Ned

Good for your mom for mentioning the pain, and good for your onc for immediately checking it out. Sometimes people try to tough it out and not "bother" the doctor, and that can lead to major complications in a hurry. Aloha, Ned

Hey, Barb, that's great news!! Yes, PET scans light up for a number of things other than cancer. Glad that was the case with you. Aloha, Ned

Thanks, Susan. Suspicions confirmed! Aloha, Ned

Hi, Toddy, thanks for the update -- sounds like a good plan. Best wishes and Aloha, Ned

Hi, Linda, welcome to the group. Even today your mom probably won't get a definitive diagnosis -- the CT scan results may be "suspicious" for cancer, but usually some type of biopsy needs to be done before the specific type of cancer (if it is actually cancer) can be determined and a treatment plan developed. Other types of scans would probably be scheduled as well. So let us know what they tell you, and those of us who have been down a similar road as patients or family members or loved ones or friends will be here to help you along the way. Best wishes and Aloha, Ned

Hi, Marci. Since hair loss is just starting now, that seems to add weight to the idea that the mouth problems are a delayed result of the chemo. As I read your profile, she didn't have her first radiation until yesterday (3/24) since the earlier plan was changed in preparation for surgery. The human body is unbelievably complex, and all sorts of things can happen which are not "typical." Aloha, Ned

Hi, Linda, welcome to the LCSC! And yes, you should put your cancer profile info in the signature block. I don't recall seeing a history quite like yours before, with a "regular" adenocarcinoma removed from one area and the BAC variant showing up elsewhere, and it's good that you were sent to a BAC expert. If they decide to put you on Tarceva, many of us have experience with that and can help you navigate those skin toxicities. Best wishes and Aloha, Ned

Hi, Gail. I got a copy of what appears to be the same thing from my neighbor, but it seems a bit extreme to me and I haven't made any diet changes attempting to comply. We have a multi-generation household and have always tried to "eat healthy" with a minimum of fat and preservatives. For myself I do supplement with Ensure or its Wal-Mart clone, currently one can a day, but back when I was on Taxol/Carbo and having trouble eating, I drank three per day for several weeks to maintain weight. Some people with cancer do go on rather strict diets of one sort or another and seem to have positive results, but who knows how much credit the diet should get. Maybe they also started meditation, yoga, tai chi, or qigong at the same time... Aloha, Ned

Hi, Grammy, thanks for posting. You guys have made some good decisions along the way -- congratulations to you both! And so much for prognosis statistics! We love Dr. West too. Aloha, Ned

Hi, Noelle, welcome to the group! Looks like we're on a similar path, with me about 6 months ahead of you. I had 4 months of Taxol/Carbo/Avastin, then 8 months of Avastin alone, now Tarceva since October 2007. Alimta may be in my future -- I'm happy to see that it seems to be working and you're tolerating it well. You can put your diagnosis/treatment/scans history down in the signature block where you have just "Noelle" and save a lot of typing on future posts. That's what we call a profile, and it's a very handy feature on this site. Best wishes and Aloha, Ned

Mine started coming out in clumps (clogging the shower drain) 12 days after the first Taxol infusion. Since our son was here I had him give me a close buzz cut over the weekend, and the rest of the stubble came out over the next few days. I was happy to see that my bald head was fairly well shaped with no big lumps anywhere, and I figured if Howie Mandel can look good bald, so can I. The next time I saw his show I was puzzled as to why he looked better than I did, but then I realized -- Howie has eyebrows! Aloha, Ned

Judy, at least you know you're still capable of feeling that way, and that's good news in itself! Aloha, Ned

Hi, Gail, sounds like things are about as expected for Hank so far. Out of curiosity and trying to detect any patterns, I kept detailed daily records on an Excel spreadsheet during the 4 months I was on Taxol/Carbo/Avastin. I always had my chemo infusions on a Tuesday, followed by the Neulasta injection on Wednesday. Felt good until Wednesday evening, then the fatigue set in (Decadron was wearing off about then also). Tired and needed naps Thursday, Friday, and maybe Saturday, but never felt "bad" or nauseous. By Sunday things were looking up and my general energy level gradually increased over the next 2 weeks until it was time to do it all again. The second week some of the other side effects listed in my profile started to appear -- not all of them every cycle, just sort of at random. Some were more of an annoyance than anything else, but the most bothersome effect (and this occurred all 6 cycles) was blisters on the feet which prevented me from going out walking even when I felt up to it otherwise (I had been cautioned to avoid skin breaks which might lead to infection). I did a lot of exercising on my back, pedaling my feet in the air, which was better than nothing even though the scenery got a bit old. From what I've seen, not very many people have that sort of problem with the feet, so hopefully Hank will not and you both plus any 4-footed friends can go on lots of nice walks together. So that was the most bothersome, pervasive problem. The most "serious" problem was peripheral neuropathy -- numbness plus tingling in the feet (and sometimes hands) which progressed into electric-like stabs of pain and loss of leg muscle control. This didn't happen to me until the 6th (and last planned) 3-drug cycle, and is good cause to change medications if it happens in an earlier cycle. This is NOT something to be toyed with or toughed out, as it is a cumulative effect of the Taxol and can even lead to permanent disability. My onc had been asking about numbness/tingling on every visit, and the answer was always "no" until this last cycle. I tracked him down by phone and he called in a prescription for Neurontin which resolved the problem for me fairly quickly -- some others have not been as fortunate. I had been on alert for neuropathy from the beginning, and there was no way I could have confused it with the foot blister problem (which I still had at the time). About going out for the day or a short trip? I wouldn't hesitate based on what "might" happen. For me at least, things didn't happen that fast, and I wouldn't be feeling decent one hour and completely out of it later the same day. There have been plenty of times in my life -- colds, flu, vertigo problems a few years back -- when I felt a lot worse then when I was on this chemo regimen. Aloha, Ned

Hi, Lisa: You're received some great advice already, and I'd just like to add my welcome. You've found the finest place on the Web for lung cancer support from the perspective of a patient and family member. For more technical medical questions, please visit onctalk.com. There's a wealth of information there, primarily on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. Best wishes and Aloha, Ned

Hi, Janet, welcome to the LCSC! I've been "over there" too with the same username, but my chemo brain has a much easier time here and at OncTalk. Glad you joined us. Best wishes and Aloha, Ned

Barbara, it's almost 40 winks time out here too. But if you're wondering why the size tags didn't work in your latest modification, it's because the slash mark in the end code is angled the wrong direction. It should be a forward slash / but you have a back slash \ and that's why you can actually see the codes and they didn't take effect. Change the code at the end to [/size] with no space after the slash and that should work. Aloha, Ned

Barbara, in case Judy is tied up let me help you with that -- I just found myself with some spare time this afternoon because it's raining and I can't mow the lawn...darn!! To make the lettering in your profile smaller, type (size=9) at the very beginning of the profile text and (/size) at the very end, except use square brackets [ ] instead of parentheses ( ). I had to type it this way here so the codes wouldn't take effect and disappear. If I enter the codes correctly, with square brackets, the first part of your profile will look like this: Bill, diagnosed at age 74 in December 2004. Diagnosis: Adenocarcinoma Stage IIIB - inoperable due to location. Jan. 3, 2005 - Feb. 25, 2005 - Concurrent: Radiation w/carboplatin and taxol - aggressive, 7-wk regimen with scans showing 50% shrinkage of tumor and nodes. Sept. 8, 2005 - Swollen gland in neck checked Sept. 13, '05 - CT scan of neck Sept. 14, '05 - Chest X-ray Sept. 28, '05 - Biopsy of neck nodule/positive In looking through your profile, I noticed some extra hard returns and line breaks that could be taken out to save room. By doing that, plus making the dates bold -- put ( before and (/b) after each date with square brackets -- you can save room and make it easier to read at the same time. You can use WordPad to take out the extra returns/breaks then copy-paste back into your profile window. So then your entire profile would look something like this: Bill, diagnosed at age 74 in December 2004. Diagnosis: Adenocarcinoma Stage IIIB - inoperable due to location. Jan. 3, 2005 - Feb. 25, 2005 - Concurrent: Radiation w/carboplatin and taxol - aggressive, 7-wk regimen with scans showing 50% shrinkage of tumor and nodes. Sept. 8, 2005 - Swollen gland in neck checked Sept. 13, '05 - CT scan of neck Sept. 14, '05 - Chest X-ray Sept. 28, '05 - Biopsy of neck nodule/positive. The New Stage became Stage IIIB-IV Oct. '05 - Jan. '06 Gemzar/carboplatin regimen Jan. 12, '06 - Scans determine results stable - except neck nodule. Oncologist changed regimen to Alimta Jan. 2006 -Alimta March 2006 - CT Scan - Alimta working. Neck nodule had shrunk in less than ten days after first infusion. July 2006 - Scans show shrinkage, Alimta still working. October 2006 Continuing with Alimta - Bill has received 12th infusion. Results of CT scans of abdomen and pelvis (ordered by urologist concerned about kidney cysts found two years ago). CT Scans: Nothing of concern in any organs. November 14, 2006 - Alimta infusion #13 December 12, 2006 - Alimta #14. Shoulder has been painful. MRI ordered w/wo contrast for closer look at that area December 18. Dec. 16-27 MRI results show possible tearing in shoulder? A mass is seen, and another scan is suggested for additional look due to "history." Scan taken by Radiation Oncologist. Alimta #15 - Appt. Thursday, Jan. 11, 2007, cancelled due to shoulder problem. Jan. 11, 2007 - Two bone mets (one was mentioned over a year ago, but "disappeared" on subsequent CT scans) to receive radiation tx over 15 sessions to lessen/eliminate pain in shoulder. Jan. 17 - PM - Begin rad. tx. Jan. 25 -PM Will be changing positioning for effective continuance of radiation, so as not to damage nerves in arm. Still experiencing pain in shoulder, taking Advil every 4-6 hours. February 13, 2007 - Last Radiation Tx tonight. Had 20 in all. No pain, discomfort. All feels OK. February 19 - Fatigue ending - energy level rising. February 20 - Scans scheduled, depending on results, chemotherapy break for three months. February 27 CT Scans Taken. February 28 call from oncologist's office - appointment tomorrow for follow up. March 1, 2007 - Chest CT scan fine, Neck CT Scan shows neck node growing. PET taken. After PET scan, we will confer with oncologist to determine what course to take. Received PET scan in the mail. No further mets anywhere else . March 15, 2007 - Met w/radiation oncologist. He conferred w/chemotherapy oncologist. The PET shows ONLY the bone met worked upon, and the neck nodule. Scheduled to radiate neck nodule. Everything else is OK. March 19/07 - Appointment with chemotherapy oncologist - blood work. March 20/07 Began plan and was mapped for radiation treatments. March 21/07 Xray and first treatment tonight late evening. March 30/07 More than 1/2 way through rd txs. Xrays taken yesterday. Doing well, eating well, fatigue, but resting at those times. 4/11 - Doctor adding five more to treatments. Good to go. Will have 20 completed next week. April 18, 2007 - Bill was set up & planned out for 5 more rad txs (straight on). April 25, 2007 - Competed Rad Txs (20 to shoulder, 20+5 to neck). Feeling well. Has been active and hasn't lost energy level. May 25, 2007 - Followup visit to Radiation Oncologist. Bill told him of a "slight movement in back muscle" (twitch) which has occurred several times in left wing of back. Doctor said it could be involuntary message, so ordered CT scan of brain for May 30. May 30 - Results of CT scan of brain: A solitary met in midbrain. Discussion resulted in WBR prescribed for a month. If met is not obliterated then, cyberknife/directed radiation treatment. May 31 - Began WBR. June 11, 2007 - Bill has completed his 8th WBR tx. He began with 3 steroid tablets a day, but the dosage gradually lessened to one. He will be having 20 treatments in all. June 25 - Decadron over and done. Last 3 rad txs (total 20) will be completed June 27. June 27 - Last treatment today #20. Will visit radiation/oncologist) for observation and vital stats. June 28 - Post tx visit in one month. July 26, 2007 - There was an "uptake" on the right side of the neck in conjunction with the CT scan. A couple of others were too small, or undetermined as to what they were. Appt. next week for scan to see how the WBR worked. Next appt. for oncologist will be in 8 weeks. August - Still on a chemo break. September 20 - Discussed results of early CT Scan - Significant reduction of nodule in midbrain. Further shrinkage expected. Next Brain CT Scan October 8 Also, CT scan w/contrast of neck and chest. If shrinkage of brain nodule continues there may be no need for directed radiation - continued shrinkage. Bill continues to be "a bit tired," and Is eating well, but not in the mood to eat - has lost famous appetite. But, he doesn't allow himself to skip a meal - even though it takes longer to finish - very long. Keeps very active, but takes naps when needed. He has lost 8 lbs. since beginning of radiation. He was 180 lbs. - now 172 lbs. Oncologist said that if there is no growth on scans we will not attack, but if there is, we will. Still on chemo break. October 8 CT Scan of brain shows narrow sliver of fluid, appt. October 9 to see Neurosurgeon to assess significance of finding. He told us that we would watch it because it was a narrow ribbon on the periphery of the brain. Most likely, it would disappear on its own. No symptoms. Nov. 8 CT Scan of brain, office of Neurosurgeon called to make an appointment for November 19. Bill feels fine. Has been active, takes a nap if he needs, is still spending time outdoors, raking, etc. - but pacing self. November 19 - Report on (what was called "fluid" on first visit is now being referred to as blood)but down to a minute sliver and will be followed next month to assess once again. Asked neurosurgeon when it might disappear completely(ballpark estimate). He estimated in about three months. December 26, 2007 - Visited the neurosurgeon for liquid/blood issue in brain. On this last CT Scan, that area had increased slightly. Three options: Continued watching and do nothing as yet. Give Decadron for three weeks and see what that can do. If it doesn't work, go in and do surgery. The last option is to go in and do surgery now. Asked the doctor if it were his brain which would he choose. He said, "I would choose Number 2. Take meds and see if that could resolved it." We concur. January 3. 2008 - Had CT Scan of Neck/Chest. Dr.'s office called and said OK, but wanted PET as Gold Standard (also it has been six months from last PET). January 10 - PET Scan Today. January 15 - Bill will be having a CT of brain to determine if the narrow ribbon og fluid/blood on left outet periphery of brain has diminished with the Decadron. Otherwise, Bill is feeling very well. January 17 - Neurosurgeon called and said that Bill does not need to see him further (unless he should have an untoward symptom) because the "ribbon" of fluid is now extremely narrow. The decadron worked. January 21 - Visit to oncologist to discuss PET scan taken after CT scan of neck and chest. Will report back here after discussion. OK, here it is: Growth in neck area left side and rear, and new growth (small) in lung (all other organs NO uptake). Next Monday, January 28, Chemo regimen: Avastin/taxol/carboplatin January 28 - We were at Cancer Center 10 hours altogether from arrival (CBC/BP/weight) to completion. Had Infusion with Avastin followed by a VERY, VERY SLOW drip of taxol (starting out slowly w/taxol) and lastly, Carboplatin. Prescribed: One week daily injections Neupogen (wbc). Bill is fine. Coninues living "new normal." February 18, 2008. 2nd Infusion Avastin/Taxol/Carbo. Doing well. February 19-25 Neupogen injections for white blood cell count. Completed injections. Bill OK. March 6, 2008: CT w/Contrast Neck and Chest to assess effectiveness of regimen. March 11 - Visit to oncologist, read CT results, shrinkage, going forward with third round. To receive one week of daily injections Neupogen for wbc (white blood cell boosting). March 19 - Bill trimmed library books in basement - many bundles. Packed each bundle with cord, and set out for pick up. Still moving actively every day. Feels fine. Takes daily nap. Another tip: If you're posting several times in the same topic thread, you can enter some of the posts without the profile and save even more room. As you're writing your message, look at the check boxes at the bottom of the screen and uncheck the box that says "Attach signature." That will be effective for this message only, so you don't have to undo anything to have the profile appear with your next message. I've done that for my profile on this message, since it's repeated somewhere close to the beginning of this thread. By the way, I'm glad I took the time to do this, because it gave me another chance to read about your husband's amazing journey. You're both to be congratulated! Aloha, Ned

That's very encouraging! Her situation sounds much as mine was in August 2006. Let us know what specific type of lung cancer is found on the biopsy, and what treatment is offered. Things will be less scary when you have some more facts. Best wishes and Aloha, Ned

I think cat127 had some fine ideas and I can't do much more than echo them. Males are encouraged (pressured?) from childhood to be "strong," keep their emotions in check, and all that, and it works pretty well for most of our lives since we are generally taller and have more physical strength than the female gender. Of course we all know that late in life, probably more often than not, the situation reverses and the female emerges as the one with true strength and resilience. But you (and presumably your husband) are still middle-aged, and in addition to your own increasing difficulties, your husband is finding that the caregiver role is taking more out of him than he ever thought possible. The fact that he came to you with this is VERY POSITIVE because there is now time to do something about it before the situation spirals out of control. I know it was very difficult for him to do that, and the fact that he was able to speak to you honestly is a tribute to him, to you, and to your relationship. I urge you to NOT withhold your feelings, but for the two of you to embrace your illness and his feelings of inadequacy as part of the same problem, "OUR" problem.I'm extremely sorry you're both having to deal with this on top of everything else. My best wishes and Aloha, Ned

Welcome to the group, Steve -- yes, you qualify (sorry to say ). But we've got a great family here and now you'll have two. Best wishes and Aloha, Ned

Hi, Ree -- that's your mom in the photo? Wow! I must say you certainly write well for age 6!!! But that was a wonderful introduction, and I want to be one of the first to welcome you to the LCSC. I was just over at OncTalk razzing Dr. West in a forum post, and I agree he's nothing short of amazing. Best wishes and Aloha to you and your mom and the whole family, Ned