recce101

Hi, Mat, welcome to the group! You may not feel very lucky at the moment, but having a single NSCLC nodule found so early and then successfully removed gives you a real shot at a cure, which in the cancer world means 5 consecutive years with no evidence of disease. Most of us never have any indication of a problem until we're at a more advanced stage, and it would be interesting to hear what led to the discovery in your case. A follow-up on your COPD? I hope the COPD remains mild and clear scans become a routine part of your future. Best wishes and Aloha, Ned

Yes, Linda, please discuss this with hospice in the presence of your closest loved ones and advocates. I wish you peace and comfort from the depths of my soul. Aloha, Ned

Ah, the memories! When I turned 65 a while back, my family physician gleefully informed me that I was now eligible for a "free" colonoscopy, and all I needed to do was see Dr. X for a consultation. Dr. X gave me an overview of the procedure, the beverage kit with full instructions, and left me with the words "You'll have a very bad night, then I'll see you in the morning." He was right, but I was pleasantly surprised that the IV which was intended to "relax" me did more than that, and when I woke up the procedure was finished. Even so, I don't think I'll be volunteering for another one anytime soon. Ned

Hi, Diane. You can get a reliable answer by posting your question in the Forums section of cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. You can expect a response from him or one of the radiation oncologists on the GRACE faculty within 24 hours, even on holidays and weekends. A lot of us are "dual citizens" and have the same usernames there as here. Aloha, Ned

Are there provisions for malpractice suits in the Canadian health system? Ned

Hi, Bart, welcome to the group. As some of the others have said, VATS (aka thoracoscopy) would most likely be the first choice since it requires just 2 or 3 very small incisions and recovery from the surgery is relatively quick. But depending on what is found with the scope, it's possible the surgeon may need to proceed to a full thoracotomy, which involves a long incision and considerably more recovery time. That's what happened in my case, but honestly, I had a much easier time with recovery than I expected. When is the surgery schduled? Best wishes and Aloha, Ned

Whatever your political leanings, you might find this of interest: http://www.nytimes.com/2009/02/14/healt ... ef=science Ned

Hi, Kat: You're exactly the type of person our newly diagnosed members need to hear from. Several join every week, and it would be great if you could help us welcome them. To avoid a lot of repetitive typing, many of us have posted the details of our cancer journey in the My Story forum, then put a link to that post in the profile/signature block that automatically appears at the bottom of each message we send. I'm glad you've found a good support group to attend in person. Relatively few of our members have been able to find one where they felt comfortable. For whatever reason, your Kaiser Permanente group must be "a cut above." Aloha, Ned

Hi, Kathy, welcome to the group. Sounds as if you're doing well. And don't hesitate to help us welcome the other new members who join every week. Aloha, Ned

Hi, welcome to the group! I'm a wet IIIb with adenocarcinoma, doing okay 28 months after diagnosis. You can read the details by following the second link in the signature/profile section below. No cancer cells were found in my pleural fluid, but its appearance during exploratory surgery, plus the fact that the surgeon found no other condition to account for it, caused him to declare my large effusion (filling about 3/4 of my right chest) to be "presumed malignant." So that must make me a presumed "wet" IIIb, though I haven't heard any of my doctors use that term. How is your dad doing with the Tarceva side effects? If his next scan shows the tumors are shrinking, there's a good chance he can stay on Tarceva for a long time, and he'll probably be plenty ready for a visit from his grandsons this summer. But don't let him get out in the sun without lots of good sunblocker! Best wishes and Aloha, Ned

This is so hard to watch, Jenn. But it's wonderful that your stepdad is at peace and comfortable. Some patients who are considered terminal do seem to get better for a time. I think it's mainly the relief of being done with those invasive treatments and tests that sap the strength and the fact that they're in familiar, loving surroundings. If he will be receiving home hospice visits at some point, they can advise you of what to expect. Aloha, Ned

Wow, what an ordeal! Let's hope the cramping was a fluke — don't think I've heard of that one before. Did your mom get an antinausea prescription to use at home? She probably got an antinausea premed, something like Aloxi, which my NP says lasts 4 or 5 days, consistent with the timing you mentioned (infusion Friday, nausea Tuesday). If so, she probably should take it automatically without waiting for something to set in. Of course most of that stuff tends to cause constipation, another biggie, and you've absolutely got to stay ahead of that. The bone aches (especially from the Neulasta) and fatigue are very normal, though that doesn't make it fun. I hope she has some good days before it's time to do it again. I always did, though they became fewer with each cycle. Many hugs. Ned

Hi, Kristin, welcome to the group! Give us some details about your dad's condition and what specific treatment he's on, and there are sure to be people here who can give you both some first-hand info. Best wishes and Aloha, Ned

Maybe she wouldn't drown me on purpose, but I know she'd start laughing and that would be it. With the other technique I don't think anybody would be laughing, and I don't think they'd let me completely drown. Or maybe I'll just hold in a deep breath as long as I can, which works pretty well too. Nevertheless, I'll keep the idea in reserve! Ned

Neil said: That makes sense. Maybe it's just the oral version that does it — I never had hiccups when I got the IV Decadron during my Taxol months. But that was just a one-shot deal instead of spread over 3 days. Ned

Judy said: Wouldn't waterboarding be just as effective? Ned

I can see it now! Show up for your next chemo session in one of those plastic raincoat and face guard outfits like they use on the ER television show — and send us a picture! Ned

Nice photo! Ned

Well, Kneesaa, I think most people here would agree that a sense of humor, even one that some might consider offbeat, is an essential part of our toolkit. I'm glad you have it in yours! Ned

Mary, you can get a reliable answer to your question at cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. A 5x2mm nodule is quite small, possibly too small to light up on most PET scanners. Some of them go away by themselves, others just sit there and don't change, while others continue to grow and become suspicious for cancer. Unless and until that happens, it's difficult to justify invasive surgery, which has risks of its own. But please recognize that I'm just a patient and guessing at what Dr. West or one of his colleagues might say. Please check out GRACE — I think you'll be impressed. And welcome to the group! Aloha, Ned

Sounds very similar to what I had while on Taxol/Carbo/Avastin. My nose was quite runny, but the discharge seemed to lack the normal amount of lubricant to keep the membrane inside the nostrils in good condition, so they felt dry and fragile in spite of all the discharge coming down. It was similar to the "dry eye" effect which many people have for other reasons — the tears lack the amount of lubricant they need, the eyes send back a signal to send more tears, but they're also deficient in lubricant, and it's a vicious cycle where the eyes are constantly running but feel dry at the same time. I had that too on Taxol, and I got some OTC eye lubricant drops that helped some, but it was still a problem and there was a period when all the tears blurred my vision to the point that I didn't drive (couldn't read street signs). The nose issue was a little easier to handle. A couple of times a day I would smear some plain Vaseline up my nostrils to keep them more supple, and that helped keep the discharge from sticking to the membrane and ripping off a piece of it when blowing the nose. One of the side effects of Avastin is said to be nose bleeds, but I found that after I finished the Taxol/Carbo program and went on Avastin only I didn't have so much of a problem. So I'm convinced it was the Taxol, or maybe to a lesser extent the Carboplatin, that was to blame. To supplement the Vaseline, you can also get a bottle of nasal lubricant spray to reach the areas further inside. Lots of "normal" people use this to keep the nasal passages more comfortable during long airplane flights when the cabin air is very dry. Hope this helps, Ceedee. Aloha, Ned

You can get the best answer for this sort of question by visiting cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Aloha, Ned

My oncology clinic is fine, but I know what you mean, since my dental clinic is exactly as you describe. Maybe that's why, although they're nice people and one of the dentists is a personal friend, I still dislike going there. Your mom is on a very good treatment plan, and since she's obviously a tough lady, there's every reason to expect she'll respond well. I was diagnosed with adenocarcinoma stage IIIb over 28 months ago shortly after I turned 71, and I'm doing okay — certainly much better than I thought possible when this all started. Keep us in the loop and we'll try to give you some helpful into on whatever side effects she has. Aloha, Ned

I started Alimta yesterday (February 3) and decided to post a log of the side effects I experience with this third-line treatment. I'm starting from a relatively clean slate in a couple of respects. According to my latest scan, there's still no evidence of mets anywhere outside the right chest, the original tumor is probably scar tissue, and the pleural effusion has not shown any evidence of returning. The reason for stopping Tarceva and moving to Alimta is because a number of new nodules which showed up in the July and October scans have continued to grow and are presumably resistant to Tarceva. So far these new nodules have not caused any obvious symptoms. Also, the side effects from my previous treatments have resolved to a remarkable degree, even the skin issues and stomach distress from the Tarceva that I'd been on for 16 months but stopped just 8 days ago. Starting this past weekend I've felt better and more "normal" than at any time the past 3 years, my other chronic conditions are behaving, and while I have limited endurance for hard physical work, I feel quite capable in most ways. So whatever happens in the days and weeks to follow can very likely be chalked up to the Alimta. My updates may become less frequent as time goes on, but I'll make them daily for a while. 01/27/09: Stopped Tarceva, received B12 injection and prescription for Folic Acid (take daily), Decadron (take the day before, day of, and day after each infusion), and Compazine (take as needed). 02/03/09 [A1]: WBC was elevated, probably because of the oral Decadron, but no evidence of infection, so cleared to begin. Opted out of the automatic Neulasta injection that would have been tomorrow, but will come in for blood test next week. Premeds included IV Decadron, Aloxi, and Tagamet, followed by the 10-minute Alimta infusion. Total time hooked up less than 1 hour. No discomfort, had a good lunch, was active in the afternoon, good dinner. The only thing out of the ordinary was several episodes of hiccups, rare for me. My standard anti-constipation routine will be 2 OTC Docusate Sodium capsules before bedtime and prunes in the morning. 02/04/09 [A1+1]: Good sleep last night. As of early afternoon still feeling good, still having hiccups, plan to go shopping shortly. Will have last Decadron tablet before dinner, so anticipating somewhat of a crash tomorrow. 02/05/09 [A1+2]: A little tired, not bad, won't need a nap today. No more hiccups, but have developed a slightly sore throat and tongue. Gargling with baking soda and warm water helped. Hope this doesn't interfere with the barbecue ribs I put in the slow cooker this morning! Took a nice walk in the late afternoon, and the ribs were good. 02/06/09 [A1+3]: Stool softener and prunes weren't cutting it, so also took milk of magnesia last night before bed, and the logjam broke this morning. Will discuss this with the NP or onc when I get my blood test next week. Throat and tongue have improved, and I actually feel pretty good as of 7am. Faded about noon, took an afternoon nap, better by dinner time. Some soreness in the legs, abdomen, and rib cage. It takes more effort to breathe deeply, and there's some discomfort when the lungs are fully expanded (not enough to be called "pain"). 02/07/09 [A1+4]: Good night's sleep, still a little tired, but feeling more normal in general. Throat okay, no problems with taste or digestion. Took a walk in the afternoon. Had pizza for dinner and no heartburn! Definitely easier than Taxol so far... 02/08/09 [A1+5]: Legs sort of achy when I woke up, but okay after some ibuprofen (glad my stomach is in good enough shape for me to take it). Wife and I drove to Honolulu's Chinatown to buy moon cakes and Year of the Ox items for some Chinese friends. Was nice to get out, but I don't think I'll need any more walking today. 02/09/09 [A1+6]: No aches this morning, but a RASH — itchy bumps on the face and upper trunk. Maybe it's partly because I was out in the sun so long yesterday. I know Alimta rash is a side effect that the Decadron is supposed to control, and I've been off Decadron 4 or 5 days now. I believe Dr. West gives Benadryl in this situation (don't know if oral or ointment) and for severe cases may add steroids back in during this part of the cycle. I'll be going to my clinic tomorrow and will ask. Meanwhile, the Vaseline Intensive Rescue I was using for Tarceva seems to help. It was cloudy this afternoon, so I went on my standard walk. 02/10/09 [A1+7]: WBC count was fine. NP suggested I add Senokot (or equivalent) to my anti-constipation routine. For itchy rash, I'll try a standard dosage of OTC oral Benadryl and treat affected areas with1% Hydrocortisone Cream. Itch better by mid-afternoon, took my usual walk. 02/11/09 [A1+8]: Rash is still quite apparent on the upper body, both front and back, but the itch is much less bothersome and I slept okay last night. Taste and tolerance for my favorite foods seem unaffected by the Alimta, a real blessing! 02/12/09 [A1+9]: The itching has stopped, the rash on the chest is practically gone, and the back looks better. I'll continue with the Benadryl and Hydrocortisone a while longer. There's still some discomfort when breathing deeply, and the spirometer indicates my lung volume has decreased, but I haven't experienced anything I'd call shortness of breath. Overall, I think it will be a good day. 02/13/09 [A1+10]: Rash and itching are no longer an issue, and nothing new has happened, so from here on I'll post updates only when I visit the clinic or there's something else to report. Eating is once again a pleasure and no longer a chore! 02/17/09 [A1+14]: B12 injection today. Feeling good, with no symptoms I can attribute to the Alimta. 02/24/09 [A2]: Another B12 shot, followed by the second Alimta infusion. Port was accepting the IV solutions rather slowly, so chemo nurse will attempt to unclog it during my followup visit next week. 02/25/09 [A2+1]: Feeling good, minimal hiccups this time, last Decadron tablet will be this afternoon. 02/26/09 [A2+2]: Doing better than this time last cycle, and even that wasn't bad. Tongue just slightly tender, throat okay. Ramped up my anticonstipation measures with good success so far. I've also resumed my full-on Tarceva-style body lube routine, hoping that will minimize the itchy rash when and if it starts this cycle. Will definitely go for a walk today. 02/27/09 [A2+3]: Faded early last night, went to bed at 9:30, and slept for almost 9 hours interrupted by only two quick bathroom trips — an exceptionally good night's sleep for me. Throat is okay, no muscle soreness or rash so far, my favorite foods are all tolerable, and I can even taste them! Gonna help the wife with some replanting this afternoon. 02/28/09 [A2+4]: A little tired and achy today, but it was not from the replanting (the weather didn't permit much of that). Felt better after a nap. 03/01/09 [A2+5]: Feeling quite normal today, and no rash in sight! 03/03/09 [A2+7]: Went to the clinic for a blood test (fine) and to have the chemo nurse attempt to unclog the double-chamber port. No success on either side — solution will go in under pressure, but not via gravity drip. Will have a dye study done at the nearby imaging center tomorrow morning. 03/04/09 [A2+8]: Dye study indicates catheter is no longer positioned satisfactorily in vein, so port will be removed. Chemo nurse sees no problem doing infusions via hand or arm, at least for a while. 03/07/09 [A2+11]: The past couple of days the foot/ankle/calf swelling and stasis dermatitis which I've had for at least 10 years has gotten worse. In late 2006, while I was on Taxol/Carbo, there was a similar flare-up which eventually settled down to its usual mild state after I finished Taxol/Carbo and went on maintenance Avastin in early 2007, and it stayed mild throughout my Tarceva treatment. Apparently the Alimta is causing reduced circulation in the lower legs as the Taxol/Carbo did, and this adds to the already deficient circulation there which caused the problem in the first place. So far my skin lube routine has prevented the cracking and scaling that occurred the other time, and I'm already on a diuretic, so about all I can do is keep my legs elevated above the heart as much as possible — not easy when I'm feeling fine otherwise and want to stay active! 03/09/09 [A2+13]: Yesterday my left calf became very warm, touchy, and noticeably more swollen than the right calf. These symptoms seemed similar to some blood clot descriptions I'd heard, so this morning I called my oncology clinic and spoke to the nurse practitioner. She told me to go immediately to the imaging center near their building for a Doppler ultrasound, then come to the clinic. The imaging report arrived at the clinic shortly after I did, and it was negative for clots/DVT. I came home with a diagnosis of cellulitis, a prescription for oral antibiotics, and instructions (out of an abundance of caution) to call 911 in the event of chest pain or shortness of breath. The entire episode was handled with remarkable speed and urgency. 03/16/09 [A2+ 20]: Legs are better. Soreness in left calf is essentially gone, though it's still swollen more than the right side. Frequent lube with Vaseline Intensive Rescue has helped reduce the "tight skin" discomfort in both legs when changing positions. Started Decadron today in preparation for next infusion tomorrow. Feeling good overall. 03/17/09 [A3]: Received IV in hand today since port has not yet been replaced — no problem finding good vein. Will consult with surgeon later this week about replacing the blocked port with a single-lumen power port which can be used for CT dye injections (in addition to chemo infusions and blood draws). 03/18/09 [A3+1]: Planning an active day. One more Decadron tablet to go, and haven't felt anything from yesterday's infusion so far. 03/21/09 [A3+4]: Swelling in left calf is still minimal, but left knee is now puffed up and sore. I wonder how far this is going to go??!! 03/24/09 [A3+7]: Left knee is still plenty swollen, so got a short-notice appointment to see my onc today. He's still concerned about the possibility of a blood clot, so sent me to imaging to repeat the Doppler ultrasound. Negative again. Instead of more drugs he wants me to wear my detested support stockings, elevate legs whenever possible, and cut back on salt. I think the latter might be a big factor since my taste and stomach are now doing so well that I've been making up for lost time on pizza, chili, miso soup, and "you name it" for high salt content. Since I don't have any blood pressure problems I haven't been holding back, and maybe the salt has caught up with me. Another bummers! 03/31/09 [A3+14]: Left knee is somewhat improved, but onc is referring me to a vascular specialist for evaluation. CT scan shows some continued progression in right lung, and several new nodules are starting to appear in left lung, so Cisplatin will be added to Alimta starting with next week's infusion. Since my "Alimta only" experience is now ending, this log will stop with today's entry. Conclusions: Aside from the swelling, I found single-agent Alimta to be very tolerable, even more so than Avastin alone. Minor fatigue a few days after each infusion, no nausea, no problems with eating, rash only once, a subtle feeling that there was some resistance to breathing (but not to the extent that I would call shortness of breath). I expect that any new side effects I experience in the coming weeks will be due to the Cisplatin.

I agree with Bud and Patti. For some people, smoking can be incredibly addictive, more so than even those us who have successfully quit can imagine. Two members of my immediate family still smoke, though only in a far corner of the back yard and never in the house. I've come to terms with that by realizing that it's not simply a matter of will power, and that I too have some less than exemplary habits/traits that I haven't been able to change in 32 years of marriage. She has done very well in spite of the smoking, and my personal (nonmedical) opinion is that you'll both be better off if you can release these thoughts and enjoy the other 99 percent of your "hero" mom. Best wishes and Aloha, Ned