recce101

Oncologist returned my call this afternoon, said it doesn't sound like hand-foot syndrome, but wants to take a look in the morning. Will let you know what he comes up with. Aloha, Ned

Linda: Interesting! I hadn't heard about that syndrome. The descriptions I googled up don't quite match my condition, but I guess it could be something related. Thanks for writing. Haven't received a call-back from my oncologist yet. Aloha, Ned

On the fifth day after my second infusion of taxol/carboplatin/avastin (followed by neulasta after 24 hours), just as I was starting to recover from the body aches and fatigue I've come to expect, something new cropped up. My searches haven't identified this new symptom as a side effect of these drugs, but I'll try to describe it in the hope someone else has experienced it and can offer some advice. But first, I should say that for over 10 years I've had some loss of feeling or numbness in the skin of both feet and ankles, though no tingling or pain. The chemo regimen which I started at the beginning of October has not changed this. Second, I generally have some rough skin areas on the feet which admittedly I haven't cared for very well over the years, and occasionally a crack or minor scrape (bare feet is the norm unless I'm going "formal") requires attention with some antibiotic ointment and a Band-Aid. Again, the chemo hasn't made this condition any worse as far as I can tell. Here's the new part. In a smooth area on the sole of one foot, just behind the arch, an area of swelling about 1/2 inch across has developed under the surface. The skin is not red, and there is no evidence of a bite or puncture. Manipulating the area with a finger, I get the impression there is a pocket of fluid under the skin. It's painful only when pressed or walked on. A second area may be developing on the ball of the same foot, just behind the second toe. Has anyone experienced something like this as a side-effect of chemo or one of the targeted therapies? I'll be calling my oncologist's office a bit later, but would appreciate any inputs this knowledgeable group can offer! Thanks and aloha,

I'd probably be in the same boat without my port. Is it still possible for you to get one even with no chemo on the immediate horizon? That is, would Medicare and/or insurance pay for one in that case? Seems it could be justified considering the medical emergency potential you mentioned.

I already feel that way sometimes, and I'm about as new as newbies can be. If I think I have something to add to a discussion, perhaps a perspective no one else has expressed, then I'll usually do it. Otherwise, I'll just try to keep my profile updated so previous posts will have the latest information on my personal journey through this cancer maze.

Family members caring for loved ones with Alzheimer's and other forms of dementia often receive this type of abuse -- not so much related to hospice, but regarding nursing home decisions and all sorts of everyday situations. It helps to look at it this way: It's not my mom talking, it's the disease. It's not her fault, it's not my fault, it's the disease. She can't help it, and I'm doing the best I possibly can. It's the disease. Bless you.

Dear beat it: There are quite a number of NSCLC Stage IV survivors in the group. Go to Search, enter Stage IV in the top box, change "Display results as" from Topics to Posts, change "Return first" from 200 to 1000 characters, hit Search, and you'll get a large number of message excerpts displayed. If you want to see the whole thread, right-click the Subject to open in a new window or tab. You'll find many who have survived, or more accurately, are surviving. One day when I had nothing better to do I posted a long message called Thoughts on "inoperable, incurable" in the LC SURVIVORS forum. You might want to check that out -- I suspect your approach is similar to mine. But, I'm just a newbie at this, diagnosed in September, now in the middle of my first chemo cycle. Aloha.

I had a thoracoscopy and thoracotomy on Aug. 31, with a planned hospital stay of 5 days, and was able to come home a day early with no complications. Recovering from the surgery was much less painful than I'd been led to believe from my reading. In the hospital I had the epidural drip initially, but never used/needed the bolus button, so they took the tube out after a couple of days and just gave me oral pain medication when I asked for it, which was rarely. There was no pain except when moving or coughing -- the coughing pain was minimal and not a deterrent. I was given a prescription for Percocet to use at home but didn't like the weird feelings that came with it, so switched to the standard dose of OTC ibuprofen after about 3 days. The aching of unused muscles actually caused me more discomfort than the incision until I worked out an arm/leg exercise routine that I could do flat on my back on the floor (in fact, that was the subject of my first post to the LCSC). For sleeping or resting, I found a recliner chair with built-in footrest to be easier to get in and out of than a bed -- no twisting and rolling on the side required. Being an "old guy" needing 2 or 3 bathroom trips at night, this allowed me to make those journeys as needed without disturbing the wife. If you make some advance preparations and have everything you will need accessible without much stooping or stretching, you can probably handle pretty much everything on your own. But having your spouse around for 2 or 3 days would be a big help, especially if you need to take special precautions on wound care when bathing/showering. Perhaps you can get your surgeon's wound care instructions in advance. Will there be a bandage, or just steri-strips? Will it be okay to get the area wet? Having this info now will help you plan, and every little bit helps. I also found it useful to have a little waterproof stool to sit on in the shower. When you'll be able to go back to work of course depends on what sort of work you do. You'll probably have a weight limitation on lifting. Mine was 20 pounds for something like 2 or 3 weeks as I recall. My main problem before surgery was shortness of breath, and that (rather than the incision) continues to limit what I can do. The chemo seems to be helping in that regard. If shortness of breath is not a problem for you, recovery should be fairly rapid. If you can wear loose-fitting clothes at work, so much the better. Hope this helps some. Good luck and aloha!

Beautifully said! Here we are in the pre-dawn of another Hawaii day, sitting back-to-back in our crowded computer den with our individual cable connections (she wants her own IP address so I don't slow down her Web surfing!!) -- she's checking eBay collectibles, I'm of course here. Your post brought tears to my eyes. Very soon she'll ask why I started sniffling....

Tammy: Thank you so very much for your post. Sometimes we have no idea what effect our words may have on others. What may seem obvious to one person and hardly worth saying can have a lot of meaning for someone else -- that's the beauty of a site like this. Some of the messages I've read here and saved in my "keeper" file may have been hurriedly written by the author and considered to be quite routine by most readers. So I know exactly what you mean. I thank you for letting me know and wish the very best for you and your dad. Aloha,

Candy: Many thanks for the very positive update. I'm happy not only for you and your mom, but for others who may be contemplating the procedure. Aloha!

Here's a question for those of you who were NSCLC Stage IIIB or IV with pleural effusion, then had good success with chemo or radiation treatments ("success" meaning the cancer was either eliminated or significantly reduced): How much lung function did you eventually recover? If you did not recover all of the function, what was the reason given? Thanks!

Candy: I see from your summary that your mom went in for the pleurodesis. Lots of positive thoughts are coming your way from Hawaii -- please keep up posted. That's a beautiful photo of you two! Aloha,

Some 2 weeks after release from the hospital with a Stage IIIb NSCLC diagnosis, I sit twiddling my thumbs awaiting further healing of my 7-inch thoracotomy incision so chemotherapy can begin. Since I took care of critical legal and financial details before going in for the surgery, including a sealed letter to loved ones "to be opened only upon my demise," I have an unaccustomed amount of free time for reflection and am wondering why I'm not more worried about what's going to happen in the next few months. Friends have remarked that I seem so relaxed and unconcerned. So what's going on? Is it all an act? No, I tend to wear my feelings on my sleeve and learned in college that p-o-k-e-r (had to write it that way to bypass a LCSC security feature) is not my game. Am I the brave, heroic type, ready to jump into the fray with no thought of life or limb? Hardly. While it's true that I flew 100 photoreconnaissance missions over North Vietnam in my single-seat RF-101, the motto "alone, unarmed, and unafraid" was only two-thirds true for me. Do I have a fatalistic streak? No. Am I tired of life, ready to "hang it up"? Definitely not. Do I have a deep, abiding faith that carries me through, as others have described in their own battles with cancer? Not in the same way. I'm not religious in the conventional sense, but I do have a spiritual side and an interest in metaphysics. I believe all things are connected, and that amazing things can happen when one taps into channels of communication which are beyond everyday human experience. I think our golden retriever understands this better than I -- what else would explain why those big brown eyes have been studying me so intently the past several weeks? Do I have it all figured out, and know what's going to happen at so-called "death"? No. Does anyone? Perhaps the answer is not so complex. Maybe it's something as simple as realistic expectations. What do I mean by that? Shortly after joining the LCSC, I adopted the slogan "Ned [my nickname] wants NED [no evidence of disease]." Certainly that's my ultimate goal, and others who post here have achieved it, but at age 71 I recognize that I may not be able to reach that point within the lifespan built into my genes. So what's second best? How about effective relief of symptoms and reasonable control of the wayward cells roaming around my body, so I can get on with the rest of my life without being unduly hampered by cancer? Some would call it "living with cancer," or "dying with cancer but not from it." It's also called "palliative care" by some, but I don't use those words because of a terminal connotation that may not be deserved. Whatever it's called, effective management is much more achievable than a total cure, and for me, at age 71, is certainly "good enough." I think many of us focus too much on words such as "incurable" or "inoperable" and are really thrown for a loop when cancer is described to us in such a manner. Look at it this way -- don't all of us have one or more "incurable" conditions which caused us much concern at one time but which we hardly think about today? As an extreme example, I have a friend who became a quadriplegic as a result of an accident. He had a very difficult time at first, but now drives a car with specialized controls, has married, is a successful businessman, and seems to be remarkably happy and well adjusted. Or consider those who have been permanently maimed in war but have gone on to positions of national prominence and leadership nevertheless. For a personal example, while I was still on active duty with the Air Force I was diagnosed with glaucoma, an incurable eye disease which is the second leading cause of blindness in the world. Fortunately, my condition responded well to eyedrops, and with FAA approval I was able to fly as an airline pilot for 10 years after retiring from the military. Today I still have excellent vision, continue to use the same eyedrops I've been prescribed for 30 years, and hardly give glaucoma a second thought. As another example, 12 years ago (several years after I quit flying) I became afflicted with Meniere's Disease, an incurable inner ear condition with no known cause that progressively destroys the hearing and balance functions of one or both ears. The first few years were very rough, with totally debilitating vertigo-nausea episodes occurring with no advance warning in inconvenient locations such as banks and computer stores. Today, the condition is still limited to one ear, I have medications which keep the vertigo and nausea at bay, and the brain has learned to essentially disregard the faulty signals from the "bad" side. Hearing is very poor on that side, and our family has needed to make some lifestyle adjustments to accommodate my residual limitations, but I no longer feel unduly hampered by Meniere's. I view cancer as the same sort of challenge. While Ned wants NED, Ned may or may not actually attain NED, but Ned expects and intends at a minimum to "live with cancer" with the emphasis on "live." Aloha to all.

Hi, Ernie, doing okay. I see you've got this site under control -- I read your various posts and believe they will be very helpful to newbies and old-timers alike. Another handy feature that I didn't discover until recently is the "View posts since last visit" link which appears after you log in and are on the LCSC Forum Index page. From that list you can right-click open a new tab or window to read or reply to any of the new posts that look interesting, then return to the main list as needed. The LC Survivors section has some good exchanges, and since there's no minimum time required to be considered a survivor, I'm writing a little blurb on my mental approach to the NSCLC Stage IIIB/IV diagnosis I received just two weeks ago. Some friends have wondered how I can be so calm with all this happening so unexpectedly, and I've wondered too, so I'm working up some ideas that a few others might find interesting if not useful. I'm going to title it something like "Thoughts on 'incurable,' 'inoperable,' and other scary words" but that's as much as I've done so far. Maybe I'll write a little more after dinner -- the wife has gone to our favorite nearby Thai restaurant to bring home spring rolls. Yum! Aloha,

Candy -- you and your mom don't need that kind of hassle right now, that's for sure! I'm glad you stood your ground. I believe she'll feel a lot better after the draining Tuesday, and hope your oncology appointment gives you some reassurance. I'm seeing the radiation oncologist for the first time tomorrow and will update my profile after that. Best wishes and Aloha,

Ditto for me. Isn't this a great discussion board! And so fast -- at least on my computer. As you can see from my profile, I'm about a week ahead of your mom and haven't yet started chemo. Another difference is that I quit smoking 43 years ago. But then, they say non-small cell lung cancer can be caused by things other than smoking. SOB is my main problem at the moment too, and as I await a few other tests and chemo (and possibly radiation) I was told to call my oncologist if the SOB got worse, and he'd set up another draining (thoracentecis) to relieve it. The first one removed almost a liter of fluid and definitely helped my breathing. Local anesthetic, no discomfort, I just sat on the edge of the table and watched the ultrasound screen as the radiologist guided in the needle. I could feel the pressure on the lung releasing as the fluid came out. If you add your chronology to the signature block in your profile, we can compare notes as we go through this thing together. Also, I've started posting in the NSCLC & Mesothelioma section as recommended by some old-timers here. Good luck, and aloha.

Hi, Ernie, good to see you made it over to LCSC. Best discussion board website for lung cancer I've found so far. With a full 6 days experience under my belt, I'd say the first and most important thing for you to do is go to your My Profile link, scroll down to the Signature block, and write a chronological history of your diagnosis and treatment. In Preferences select Always attach my signature: "Yes." Then every time you update your profile it will automatically attach to every post you've ever made here. You can upload a photo with the Avatar feature. These personal summaries are very useful for anyone browsing the board, and there is an outstanding search capability too. If I'm looking for people's experience with, for example, taxol, I can go to Search, type "taxol" in the top block, change the Display Results button to "Posts," change the Return First choice to "1000," then hit Search. Many pages of posts will appear in short order. With 1000 characters displayed for each post, you may have everything you need right there, but you can also right-click open a new window and see not only that entire post but also the complete topic thread it's in. You can also send Private Messages, which are similar to the internal email feature of CSN. There seem to be a few features that are disabled or incomplete, but what's here now has worked for me every time without a hitch. Aloha.

John, thanks. I appreciate the suggestions. Anyone have something to add?

Thanks for the info, John. My path report has this in the comments section: "The material, in aggregate, is consistent with a primary pulmonary adenocarcinoma with direct invasion into the parietal pleura/chest wall and several areas of parietal pleura metastases." It continues with "T4 (clinically separate tumor nodules in the same lobe)" then the code "Nx" which my Googling says means the lymph nodes cannot be assessed. I don't see an "M" code. If I read your post correctly, there's no need for use of PET for staging since we're already maxed out, so to speak, and the systemic chemo would not change even if a PET detected something else suspicious elsewhere. Rather, in my case the PET would likely be used for monitoring later. Am I on the right track?

Please see below for my background and status. Currently awaiting additional consultations and healing of incision before starting chemo about the end of September. I've had a CT scan, but the subject of PET scans has not come up, and I did not ask about it during my 9/12 meeting with the medical oncologist since I was not aware of the device at the time. I now know there is a PET machine at the Queens Medical Center in downtown Honolulu and possibly a mobile van which travels to other facilities on Oahu. I see frequent reference to PET scans on the discussion board, generally in connection with checking the progress of treatment. Before pursuing this with my oncologist, I'm interested in knowing if anyone considers a PET scan highly desirable or a "must" BEFORE beginning the first chemo cycle. Would it be covered by Medicare for this purpose? And would the initial "systemic" chemo treatment likely be the same whether or not a PET scan had been done?

Randy - I sent you a PM.

Had a very good meeting with the medical oncologist on Tuesday, Sep. 12. Highly recommended by friends and several medical professionals. He reinforced our positive outlook, and there was no discussion of "how long with/without treatment" or "what are my chances," but an open conversation about what treatment is best for me at this time. Will have a consultation with a radiation oncologist and a nurse who specializes in chemo side effects, also get a port installed, while waiting for the thorocotomy incision to heal a while longer. Then about the end of September, start chemo using carboplatin and taxol initially, probably adding avastin for the second cycle. I'll make future postings in the NSCLC section...

Well, I didn't make it out of the house before the wife woke up. She insisted on going with me, which is okay, because she needs the exercise. She leashed up our precious golden retriever, so the 3 of us had a delightful pre-dawn walk around our neighborhood. Now I'm looking for upper body exercise. I have a 15-lb weight bar I've been using for years. Maybe I'll lift it a few times and see how it feels. Incision is doing great, and overall I feel much better after quitting the oxycodone. Standard Ibuprofen doseage does the trick just fine.

Yes, this NED thing sort of threw me off until I found an abbreviation list somewhere. Mine is short for the last name, unpronounceable by many not familiar with Czech names. I won't change my nickname, you won't change your abbreviation, so we'll take it as a good sign and try to merge the two.