recce101

Hi, Dovelady, welcome to the LCSC! Please let us know more about your situation so the right people can jump in to help. It's amazing how much collective knowledge there is in this group and how willing, even eager, everyone is to help you and others through this difficult journey. Just hit the "Post Reply" button at the top or bottom of this "Needs some help in FL" set of messages and give us some details. For Muriel: Marianna is between Pensacola and Tallahassee, just across the border from Dothan, Alabama. Aloha, Ned

I don't have any first-hand experience with hospice, but a quick Google search brought up these two sites (in addition to the one Randy gave you) that may be helpful: http://www.hospicenet.org/index.html http://www.hospicefoundation.org/default.asp You don't say where you're located, but there should be government offices or nonprofit organizations in or near your city which you could call for advice. Your mom's doctor or his staff would be another place to check, also a social worker at the hospital where your mom has received treatment. From what I hear, some hospice programs are wonderful, others not so responsive. Talk to people near your home for specific recommendations. Best wishes and Aloha, Ned

Hi, and welcome to the LCSC! We have a terrific group of members here who have first-hand experience, either as patients or family members or both, with just about any treatment and side effect you can name. Let us know what specific problems you're having right now and I'm sure the right people will jump in to help. As you can see from my profile below, I was on Avastin for a full year and I switched to Tarceva in October. Aloha, Ned

Katie, from all the posts you've been doing I would never have guessed that you were sick. You're quite a gal! Much Aloha, Ned

Linda, as you know, sometimes I come up with off-the-wall ideas, so if the mainstream tips don't help as much as you'd like, I'd love to try. Maybe we can figure out some new use of Bag Balm... Seriously, although I quit 44 years ago and haven't had any urge for the stuff since, I felt strongly addicted at the time. Didn't like to go anywhere that smoking wasn't permitted, didn't like to associate with people who frowned on smoking, you know the routine. Back then the health effects were not clearly established and it was more of a moral or cleanliness issue. I had been wanting to quit for some time but figured I would fail and end up with even less self-esteem. My opportunity came when I caught a horrendous wintertime Georgia cold, one of the worst I'd ever had, felt horrible and everything tasted awful. So I figured since there was no pleasure in smoking (or anything for that matter) I'd just toss out all my ashtrays and cigarettes and see what happened. After a couple of weeks I started feeling better, realized I no longer had the urge to smoke, and never looked back. I'm still amazed that it worked so well. Aloha, Ned

Hi, Mike, welcome to the group! I haven't had Alimta yet, but it's one of those waiting in the wings for me when and if Tarceva becomes ineffective. A number of people here have had it and should be checking in with you. Some have received great results with very few side effects, some had little or no response but bad side effects, and everything in between. It's supposed to be a good drug, but I get the impression it's not as predictable as good ole Toxic Taxol. You can get plenty of authoritative information by going to onctalk.com and typing "alimta" in any search box. There's a wealth of information on OncTalk, 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 stay in touch. Remember, stable is good! Aloha, Ned

ABSOLUTELY LOVE IT!! Aloha, Ned

Hi, Leslie: I agree with all the others -- find another oncologist. Even though you've been with him for a while, you don't owe him any "loyalty" since it's apparent he doesn't value you as a person. The bottom line is, these guys work for you, not the other way around. In the meantime, if you want a great example of how a doctor SHOULD relate to his patients and their family members, 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

Thanks for the update. I know this is very hard for you, and there's not much you can do if your mom will not agree to a biopsy. But try not to get too far ahead of yourself in imagining what will happen down the road -- it's possible the tumor could stop growing as it apparently did between the first two scans, and spontaneous remissions, while rare, are not unheard of. On the other hand (and please forgive me if I'm going beyond what you want to consider right now), if your mom's cancer does continue to progress, you should know that precisely targeted radiation can be VERY effective in reducing or eliminating pain, especially from bone metastases should they develop. Palliative radiation doesn't treat or slow down the cancer, but it can provide a great deal of comfort (quality of life) and reduce the need for pain medication. Many of our members have had first-hand experience caring for loved ones in situations similar to yours, while I have not, so I'm going to take a back seat now so you can communicate on your own schedule with those who truly know. My very best wishes and Aloha to you and your mom, Ned

Please let us know what your mom's doc says when you see him today. Aloha, Ned

That's great! Not having to worry so much about your white count makes it easier on everyone. When I was on the Taxol/Carbo/Avastin routine I went in for a Neulasta shot the day after the infusion -- all 6 cycles. My onc's policy was to give it routinely and not wait until the count was low. Mine stayed up in the normal range throughout my treatment and was almost a non-issue. He was also super-cautious about infection in other ways and I was put on oral antibiotics on 3 separate occasions during my treatment due to skin breaks. Aloha, Ned

Glad things are looking better, Shelley. But don't push the going home part! Aloha, Ned

Welcome to the LCSC! You've posed some difficult questions. There's no way anyone can tell you what you SHOULD do in this situation, but I can give you some of my thoughts and you can use your good judgment (which your post indicates you certainly have) to pick and choose or discard any of my ideas as you see fit. First, in speaking to the doctor, I would not ask "how long she has" in those terms. He doesn't know, and any number he gave would be a guess based on the average/median survival of others with a similar diagnosis in the past. If you really need some kind of time reference, you might ask for a general range of months/years based on what the doctor knows of her situation, but don't place too much weight on it. Getting a meaningful prognosis for your mom is further complicated if she continues to refuse a biopsy, and though lung cancer is highly suspected because of the CT scan changes, neither the specific type of cancer (small-cell vs. non-small-cell vs. some variation/combination) nor the best treatment for it (which varies with the type) can be definitely determined without a tissue sample. I completely understand your mom's point of view. Though I was in relatively good general health when I received my diagnosis at age 71 and have been on treatment for 16 months with good results so far, if I'd been frail with lots of other physical problems I'm sure I would have felt exactly like your mom. I would have felt perfectly capable of making my own decision about treatment and would have appreciated factual information but not any pressure to accept treatment that would reduce my quality of life in whatever time I had remaining. On the other hand, some people want to extend life pretty much at all costs, and their decision must be respected too. This gets very personal, and it involves religious beliefs and/or philosophical concepts that can't be adequately discussed in a forum like this. Fear of death is essentially fear of the unknown, and people deal with it in many different ways. Everyone knows it's inevitable, but some bring themselves to peaceful acceptance sooner than others. A few even come to look upon it as a new adventure. I vividly remember the account of one of our members who fought his cancer valiantly, and near the end was hospitalized but continued to decline, then shortly before he passed opened his eyes and exclaimed, "This is going to be great!" From your quote, I get the feeling that your mom is resolving her fear in a positive way. Blessings and Aloha, Ned

Gosh, Shelley, I'm really sorry to hear about the complication. I looked over your mom's profile again and I believe the radiation you're speaking of was during the 2002 larynx treatments, correct? I didn't realize scar tissue could be such a factor in surgery until Connie's problem last month, but if that was the source of your mom's difficulty too, then I guess it's something we all need to be aware of. I wish I could help you with your questions, but my port placement was nothing like your mom's in complexity. It was done under local anesthesia, took about 10 minutes, and there was no residual pain except for some shoulder soreness for a few days and the usual tenderness around the incision. My pneumothorax was from the cancer itself, or perhaps the thoracotomy, not from the port. It eventually cleared up by itself. Try not to blame yourself for any of this. There's no way you could have anticipated such a problem, and I'll bet the surgeon was surprised too. I have no doubt your terrific mom will be fine very soon. Aloha, Ned

Hi, Colleen: Thanks for unlurking, and welcome to the group! We've been on the NSCLC road about the same length of time. Looking forward to reading your profile. Aloha, Ned

Oh, that hurts! Aloha, Ned

Sally, I'm so VERY glad you're feeling better. I haven't had Alimta, but from what I keep reading, the range of effects it has on people is a lot more variable than anything else I know about, even Toxic Taxol. Let's hope it really blasted the tumor as your onc suggested. Aloha, Ned

Patty, it's great to see you posting again! Sorry you've had such a rough time, but happy to hear you're feeling better. Aloha, Ned

I've been an early riser for years -- became ingrained because of the job schedule, then it was because I was playing the stock market and the NYSE opens at 3:30 or 4:30 AM here depending on the time of year. Eventually I ran out of money that I could afford to lose and had no reason to get up early but still did, which probably wasn't doing any favors for my health. But now I've finally figured out how to get 7, sometimes even 8, hours of good sleep without taking any more pills (when I'm taking pills to counter the effects of other pills, that's enough pills). It's a 2-phase approach: I enjoy reading for a while before falling asleep, and so does my wife, but the problem is that she likes to turn in earlier than I do, and if I use a reading light (even a very dim one) after I come in, she wakes up and has trouble going back to sleep. Not good for a caregiver who's been taking care of her mother for 12 years and still is, plus me on occasion. So I started doing my late night reading in the living room and found that the firm cushions of our large sofa, supplemented by a pillow and blanket and lamp, make a delightful place to end the day. I usually wake up in about 3 hours, frequently with the book on my chest, and after a quick sip of water and trip to the bathroom I'm ready for the "real" bed, which is firm yet soft like a cloud. Five minutes and I'm out again, not to wake until after daybreak when the wife has finished her email correspondence. And no groggy headache, like I used to get when forcing myself to sleep longer with the inferior 1-phase arrangement. To each his own, but it works for me! Aloha, Ned

Don: Well, I decided to START a beard because of the Tarceva rash -- trying to shave through all those bumps was just too much. First one I've had, and I'm beginning to like it (but mine is more gray than yours). Maybe you could just clip it shorter so you can get whatever medication you're using down to the skin without creating too much of a mess. I use Clindamycin 1% gel for the red bumps, wherever they are, and a good lotion like Cetaphil keeps down the itching everywhere else. By now the skin is pretty well conditioned and it doesn't take as much lotion as it did at first -- just a thin coat on exposed areas after a shower. The period you're getting into now was the worst for me. If I had it to do over again I would start putting lotion on my hands and especially fingertips early, before the ends started cracking and the nails started separating from the skin folds. That's been my biggest problem and I'm still not quite out of the woods on that, but everything else has subsided. I did have some peripheral vision "artifacts" which began last year with the chemo -- like a floater but fast -- looks like a little bug darting out of view, but if I turn and look where he's headed there's nothing there. No flashing lights, though. Aloha, Ned

The only times I've heard that were in the case of chemo and/or radiation patients who were having great difficulty eating their customary foods and were dropping below their normal ideal weight, a dangerous situation. Those patients were told something like "eat what you want when you want" -- i.e., frequent intake of foods which are tolerable since at that point packing in more calories is more important than a perfectly balanced diet. But other than that, I certainly agree with what you say. A healthy body allows one to dispose of those wayward cells naturally, with little if any outside help. Aloha, Ned

Hi again, Fishingbuddy, and thanks for posting the additional details. To clarify the comment in your first post about "heart issues" -- has your grandfather had heart problems in the past, or were you referring to the hospitalization for rapid pulse which occurred after his radiation and chemo treatments? If there were no previous problems and his general health has been good up to now, I'd suspect the treatments to be the cause, though there may be no solid clinical evidence to support it. I've seen LOTS of comments from our members about rapid pulse following chemo and/or radiation. Maybe someone who has experienced that will have something to add. The fact that his emotional state is positive and he's looking forward to springtime is GREAT! Keep us posted on his oxygen situation and treatment program, and if any questions come up don't hesitate to ask. For the more technical medical questions, I highly recommend 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 use the same usernames there as here. Aloha, Ned

Hi, welcome to the LCSC! We have a good number of members who received a Stage IV diagnosis years ago and are doing well. If you can give us more detail about your grandfather's situation, some bells will ring here and there and you should get some useful first-hand info. I should warn you that prognosis statistics is one of my hot button issues, so take that into consideration as you read the rest of this paragraph. First, are you sure that's exactly what the doctor said? Semantic differences here can seem very subtle but still have far-reaching consequences. If the doctor said "HE has..." then the doctor was being careless with his words and that's an issue in itself. More likely he said, or at least should have said, something like "people with this diagnosis on average have a 30% chance..." or "from our experience over the past several years, we can say that out of a group with [such-and-such], only 30% will be alive a year after diagnosis." That's far different from saying your grandfather "has a 30% chance..." since there are too many factors involved for any doctor to make such a specific prediction about any individual. But people continue to ask, and some doctors continue to supply these numbers, even without being asked. You've joined a wonderful group, and you can expect plenty of help, usually without an angry face attached! My very best wishes and Aloha, Ned

Hi, Debbie, welcome to the group! My experience has a lot of similarity to your mom's situation, which you can see as you look through my profile below. In just the past 2 or 3 days we've had two other new members join with questions on IIIB, either for themselves or for a family member. Although their specific concerns differ from yours, you might gain some insight by reading the messages a number of our long-term members posted in response to their questions. In this same Introduce Yourself forum, look for the topics started by mydaddy (Introduction of myself) and deborahscott34 (Hi all). They should be close to the top of the list. In a few hours you'll be getting your own responses from some of the same been-there-done-that folks and others, but since I'm in Hawaii and still awake I'll get you started. I'm not personally familiar with Haelon 951, but I've seen it mentioned in the forums recently. There's a lot of controversy on the topic of supplements, and I would only suggest that you check with your mom's oncologist about any specific products that you plan to use. In some cases you might be advised to hold off on a particular supplement a day or two before and/or after a chemo session. I'm a big fan of Avastin -- received it every 3 weeks for a full year -- 6 cycles (4 months) with Taxol and Carboplatin, then 12 cycles (8 months) Avastin alone. During the Avastin alone period, every side effect that I had experienced from the Taxol/Carbo combination slowly disappeared, and my hair even grew back. The only side effect I could attribute to the Avastin was generally slow healing. A skin abrasion or muscle strain would take several times longer to heal than usual, but that's probably unavoidable since it's related to the drug's method of dealing with the cancer. Last summer my tumor started to show evidence of growing again, so I switched to Tarceva in October. My tumor is still smaller than it was at diagnosis in September 2006, and I'm in better condition overall. No reason your mom can't do just as well or better. The sore scalp and blurred vision are quite common, and I or others can tell you more about that if you like. But you also mentioned tingling in the toes, so I'd like to caution you that peripheral neuropathy (probably caused by the Taxol) can be quite debilitating if it goes too far. My oncologist asked me about tingling at every appointment while I was on Taxol, and my answer was always no until the 6th cycle, then it came on real bad real fast. Had to use a walker to get around, definitely out of character for me! I tracked him down at his other clinic and he called in a prescription for Neurontin (gabapentin), which fortunately worked very well. I was able to put away the walker within 2 days, though it took several months for the tingling to completely disappear. I still have some numbness, but I had that before I got cancer. Be sure the onc knows about the tingling, and if it's getting painful for your mom to walk, don't let her just tough it out. The onc should be able to switch her to another drug in the taxane family which is effective on the cancer without being so toxic to the long nerves. You have a good chronological summary in the body of your message. If you can put that in a diagnosis/treatment/test results profile (where just your name is now) and update it periodically, it will automatically attach to your messages and save you a lot of unnecessary typing. Here's how: Click on My Profile above, scroll down to the Signature block, enter/update your information, scroll down further, ensure Always attach my signature is marked Yes, and click Submit at the very bottom. From now on, your profile will attach to every message you send. If you also want to attach it to messages you've already sent, go back to EACH of them, click the Edit button (which appears with all of YOUR messages), scroll down and check Attach signature, then Submit. Best wishes and Aloha to you both, Ned

I would think whichever doctor ordered the CT scan should make the referral, and most likely it would be to a pulmonologist. In my case, our family physician (internal medicine) ordered a chest x-ray, then based on that set up my appointment with a pulmonologist, who ordered a thoracentesis and CT scan, then based on that set up my appointment with a thoracic surgeon. By the time of my exploratory surgery we had developed a list of oncologists recommended by our friends and family physician, and we matched that with the surgeon's recommendations after he confirmed cancer. So the only appointment we made on our own was with the oncologist, and that was pretty easy since it turns out we knew his parents from a political campaign we'd helped with 20 years earlier! Aloha, Ned