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bcbcbc

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  1. Jackie-- Thanks for the feedback. Yeah--I read the blurb on it in InteliHealth, which brings the word fresh from Harvard Medical School: http://www.intelihealth.com/IH/ihtIH/WS ... /9840.html Of course being a cancer patient one wonders about the linkage of each new little or not-so-little pain. I was struck by the notion that Good Grief--now I'm under siege from both ends. I suspect that if there's anything worse than lung cancer it might be the colorectal variety. Unfortunately my dietary habits remain as despicable as ever. I love greasy and spicey food. The greasier and spicier the better. I've managed to quit most of the other self-destructive nonsense. So now I need to graze on alfalfa or whole grain. Eat gruel with prunes. Another wonder of the "Golden Years." Cheers...
  2. Happiest of Holidays to one and all. Good news is that last week's x-ray shows no change in tumor. Bad news is nasty abdominal discomfort/pain--rib cage to groin especially on right (tumor) side. The oncologist says it's probably diverticulosis/itis. I had a colonoscopy two years ago--removed +/- 12 polyps--all benign. I am overdue for a repeat of that lovely procedure. Has anyone here experienced a linkage from lc to colorectal problems including cancer? What news?
  3. I'm on Tarceva 2 months now--initially 150 mg daily then 150 mg 2 days on/1 day off. Dosage reduced due to rash bloom. Funny you should mention back pain. This past week I have had an on/off pain in upper right back near shoulder blade. This corresponds +/- to the location of my tumor in the upper right lobe. So far ibuprofen handles it. Of course this is something that could be totally unrelated to the cancer though I will take it up with my onc on next visit. My shoulders took quite a pounding in my misspent youth. The only other problem I've been having with Tarceva has been some gastric distress now and then. I'm trying to be a little more careful with my diet. All the docs I see seem amazed at my prognosis. I haven't lost any significant weight in 15 months since diagnosis. I've recovered nicely from a serious bout with pneumonia that seemed provoked/aggravated by Alimta. What the oncs don't know/don't want to hear is that I've now been taking AHCC for 15 months. This stuff was recommended to me back when I was first diagnosed by an MD who is not an oncologist but who follows alternative medicine. It's a Japanese mushroom derivative widely used as an immune system booster in Japan as part of first line treatment. Coincidentally--or maybe not--the only time I went off the AHCC was in September when I came down with the pneumonia. I had run out of the capsules briefly, then ended up in the hospital where I had no access to them. Needless to say I've jumped back on that ever since and haven't missed a beat. Other than what I've read, the opinion of the doc who recommended the stuff and my own anecdotal experience I of course have no basis to know if this stuff is doing anything. Nevertheless it puts a twisted smile on my face to think that a Brooklyn psychiatrist friend may have saved my life with Japanese mushrooms while all these oncologists dosed me to near death with their stinking toxic chemos.
  4. TAnn-- Happy to hear you are having good results with Alimta. Goes to show how differently different people respond to the chemo drugs. Alimta about took me out. Provoked a serious bout with pneumonia, from which I'm only now fully recovering. Perhaps it was just a coincidence that I was vulnerable at that time. But my oncologist agreed that Alimta was a factor in my problems. On the other hand Tarceva seems to be doing it for me. The only side effect has been the rash, which is now tolerable taking 150 mg two days on/one off. There was a very interesting article in the NY Times last week with a chart showing how cancer cells lack a certain molecule necessary to activate T-cells that would otherwise destroy the cancerous cells. They seem to be close to understanding the roles of certain proteins involved in the biochemistry and developing drugs like Tarceva that have a targeted effect instead of the systemic toxicity of chemo that makes us feel so lousy. Let's hope they quicken their efforts and offer us a "just-in-time" solution. Best to all...
  5. Thanks for all the feedback and good wishes. The rash has subdued considerably. As I mentioned somewhere we changed the dosage to 2 days @150mg then 1 day off. Seems that would = 100mg daily. I have to wonder how much of the change in the rash is due to the reduced dosage and how much to biochemical adaptation/improved tolerance. It's 6 weeks today on Tarceva. The real question is what's going on with the cancer. I'm seeing the onc today and will address that. Is it time for a new CT scan? Bone scan? Or is it too soon to know what Tarceva is doing? Aside from the rash I have had no other significant side effects from Tarceva. That places it on the top of my hit parade of cancer drugs. Now if this s...t is actually attacking the cancer that would make it the real deal.
  6. Saw the onc today. Seems concerned that the rash may be continuing to spread down over my bod. Right now it's all over my scalp, face, neck, shoulders with outbreaks on rib cage. I'm a freakin' mess. No doubt about that. But other than the itching/burning discomfort I don't have other issues as with Alimta. I'll take a rash over pneumonia, weakness and desperate SOB any day. In any case we agreed to back off the dosage to 150mg for two days--then a day off. So I guess that's the equivalent of reducing it to 100mg daily. I go back next week for another look at the blooming rash, which I hope has hit full bloom and a fade by then. On the up tick we know that Tarceva is doing something Best to all...
  7. I'm okay with Tarceva--providing it keeps the cancer wolf at bay. I'm only a tad over 3 weeks on 150 mg pill daily. The non-rash started up last week. It is a weird one--almost like a wind burn. Compared to the other chemo drugs I've had this is a picnic. Occasional fatigue. Dry throat, mouth and skin. But if this stuff works on the cancer I'm all over it.
  8. My earlier post was after the first treatment. Mild side effects. Then I had a second Alimta treatment. I was wiped out. Much worse than Gemzar/Carboplatin. Weak. Weak. Weak. Incredible fatigue. All this started 4 days after treatment. At the one week mark I checked into the hospital. I had severe pneumonia. It has taken a good 6 weeks to recover from this. Obviously I have discontinued Alimta. Now I'm on just Tarceva. Nasty rash on neck and face. Dryness of throat, mouth, skin. But I can deal with drinking water and using hand cream. Cancer seems to continue stable--no less--no more. Anybody have any feedback on the Tarceva rash? Mine occurred about 3 weeks into the 150 mg pill daily. It seems to be getting a little worse each day. Itchy neck and scalp. Does it keep getting worse? Does it taper off? Best to all...
  9. I would agree that it is certainly good news that your tumor has shrunk. Mine has remained the same size for over a year now. I've learned that "stable" is good though shrinkage is probably better. When I was first diagnosed in Sept. '04 I had a very large pleural effusion. This is an accumulation of fluids in the pleural space between the two pleural membranes--the one that covers the lungs and the one that lines the chest cavity. Normally this space is used by the lungs as they expand. Of course if the space is filled with fluid the lungs have less expansion room, which causes shortness of breath. When I finally went to the ER I was so short of breath I thought I was having a heart attack. They tapped into the pleura for a sample of the fluid. It did contain malignant cells. Over the next couple of days they did a thoracentesis to drain the fluid. They drained five (5) liters--well over a gallon of fluid. Then they did a pleurodesis with bleomycin. They inject this substance into the pleural cavity to cause irritation, which has the effect of +/- fusing the two pleural membranes. If it works this eliminates pockets where the fluid can accumulate. It didn't work perfectly for me but it worked sufficiently well that I have not had to have further drainage over the past year. For most of this year I have enjoyed good health--an active life. Chemotherapy, some radiation and perhaps some other juju have combined forces to keep the cancer from growing/spreading so far. I did have a scary setback last month with a bout of pneumonia possibly brought on by a chemo drug to which I had a bad reaction. I'm happy to say I'm now mostly over that and feeling well again. Friends and family who know I have lung cancer are amazed at how well I look--how active I am. I don't find it convenient to tell casual friends/acquaintances about my cancer. They don't need to know and I don't need for them to know. If the issue comes up due to my use of bronchodilators or a coughing spell I may casually mention my allergies or chronic bronchitis. Avoids much pointless discussion. It's not like I'm contagious. I guess my point is--be of good cheer--no matter how grim things may seem at some moment--many of us overcome crises to move on to a decent quality of life and more longevity than expected. Best regards...
  10. I think it's unreasonable to expect much in the way of sympathy in regard to lung cancer. It is beyond doubt that the vast majority--85% or more of NSCLC cases are attributable to smoking cigarettes. As such it is the consequence of an addiction just as cirrhosis of the liver is largely a consequence of alcoholism as certain other diseases may be the consequence of drug addiction. The fact of the matter is that our smoking has imposed and continues to impose an enormous cost on society--uninsured and unrecoverable health care costs, loss of productivity, effects of second-hand smoke, and on and on. We're dumping this multi-billion $$$ tab on society at large--and we want sympathy yet? Fuggedaboudit. Personally--for me--it is important that I accept responsibility for the illness I have substantially brought upon myself. I don't mean this to be some kind of exercise in self-flagellation or Judaeo-Christian guilt/shame. Rather it is a matter of acceptance of the truth. I did quit smoking about 15 years ago. By then I had already logged maybe 50 pack-years. The surgeon general's warning was on most of those packs. I don't mean this to offend anyone whose opinion may differ my mine. It's just the way I see it.
  11. So today is the 2 week mark on Tarceva. A few minor sores in mouth. Dry skin/mouth/throat. No rash so far. Dryness in mouth/throat seems relieved by oxygen from concentrator, which contains a humidifier. The pulmo told me to use the O only at night when sleeping. The onc told me to use it whenever I felt like it. Since I find it uncomfortable and disruptive of sleep I'm going with the onc--use it for an hour or two when throat gets hoarse. That BTW seems to be something new with the Tarceva--hoarseness. Anybody else have that reaction? Toodles and good cheer to all...
  12. Hi All-- Again many thanks for feedback, good wishes, etc. After the bad episode with Alimta I started 1-a-day 150MG Tarceva pill 10 days ago. Last Saturday I was finally out/about walking my streets here in Williamsburg. Especially nice after 8 days of continuous hard rain here. Walked some 12 to 15 blocks with little/no SOB. Then yesterday went out on a little shopping spree in the 'hood--maybe 8 blocks out and back--very SOB all the way. I'm guessing but I suspect that on Saturday I was enjoying the respite between the waning effects of Alimta and the nascent effects of Tarceva. But anybody's guess is as good as mine? Many thanks to all who responded to my post on brain irradiation. Yes--I now know the difference (sort of) between PCI and Whole Brain Toast--(now unofficially WBT.) I saw the rad onc on Tuesday. He had met with the med oncs and the tumor board. The conclusion was that despite recent setbacks I've generally done well over the past year. So why rock the boat with PCI. BTW my cancer is NSCLC--adenocarcinoma of right lung--3.5 cm tumor. Stable over last year. Today I saw both my pulmonologist and med onc. The pulmo increased the dosage of Atrovent to 4x daily and is replacing it with something that contains both Atrovent and Albuterol. He said part of my SOB problem was that I was under-medicated for COPD. He also ran an oxygen test--doodad on finger--resting then after mild exercise. Conclusion is that I do not need O during the day but since I already have it at home I should sleep with it on. Med onc said he had some concern about the rare fibrosis reaction to Tarceva--sent me to have a new chest x-ray. Results tomorrow. The x-ray tech showed me the screen images. The good left lung is nice and dark--meaty-looking all over. The right lung looks like it's lost in a fog bank Down East. We'll see what the pros say tomorrow. I really had no idea what I was looking at. For Bunny--yeah, I've stuck with the Brooklyn VA. I've gone to MSKCC twice for second opinions. I like the people at the VA better. I have a rapport and incredible access to both my attending med onc and the chief--his boss. MSK offered exactly the same treatment plan as the VA--same chemo drugs--same schedule. MSK has a better fruit buffet and the mink coats coming and going can be impressive. But frankly it's a little Uppity East Side for me, even though that's my old 'hood. All these guys/gals have the same books and access to the same clinical trials, new meds, etc. They're all under tight supervision and peer review. For me the key is going somewhere where you can establish rapport and a +/- personal interest with the docs. I'm hopeful the Tarceva works for me. If not--we'll try something else. BTW I also have an ace-in-the-hole here. Back when I was first diagnosed a friend of mine who happens to be an M.D., though a psychiatrist, told me to go ahead and do whatever the oncs said but also to get myself a mushroom-derived nutritional supplement called AHCC. He sent me some documents and the web site. I've been taking this stuff faithfully for a year though about the time of the Alimta episode I had run out and couldn't get any until I was out of the hospital. I mentioned it to a few oncs along the way. Got the raised eyebrows and rolling eyes. But the stuff is front line treatment for many cancers and other diseases in Japan--has been for years. Supposedly it fortifies the immune system and activates the "hunter-killer" white cells that attack malignant cells. I reluctantly mention it here with personal assurance that I have no financial or other interest in this stuff--other than the possibility that it may be aiding my struggle--and maybe could help someone else.
  13. Thanks for all the feedback. PCI--till now I thought was a circuit board you stuck in the slots of your computer--Peripheral something or other. More research. The amount of time spent checking this stuff out--then still it's a coin toss. Mayos--I gather whole brain radiation is distinct from PCI?
  14. Hi again-- Happy to report I'm feeling better each day the farther I get from Alimta. That stuff really hammered me. I tolerated Gemzar/Carboplatin much better. Different strokes for different folks. Or maybe my immune system was stronger back then. Nobody seems to understand how any of this stuff really works. Why should I? I started Tarceva last Tuesday--one 150MG pill daily. So far the only reaction is dry skin and dry mouth. If all this entails is drinking water and using hand cream I'll be a carefree tourist. Tomorrow I have a follow-up appointment with a radiation oncologist I first saw six weeks ago just prior to my Alimta/pneumonia episode. At that time my health was robust. This guy was struck by the fact that it was then a year since diagnosis and I appeared to be in great shape--just a little SOB. So after examination and review of my records, etc. the guy asks me if I ever heard of Prophylactic Irradiation of the Brain. I hadn't. So he explains the course of treatment--8-10 daily treatments on successive days as I recall. Maybe it was 14. Frankly I was more amused than interested in having this dude zap my brain, which seems to be working about as well as it ever did, thank you. Arguably that may not be saying much. So this guy said if I was interested he would talk to my medical onc/treatment team/tumor board to see if this should go forward. I told him to go ahead and check it out--mostly curiosity. BTW since then I have had an MRI of the brain because of headaches I had with the pneumonia. Clear. Nothing there. Before I decide to let this guy or anybody else beam my bean I'm gonna have to see/hear a very persuasive argument with lots of supporting evidence. Have any of you folks out there heard of this treatment or had experience with it? Thanks as always for feedback and support.
  15. Thanks to all for the feedback, greetings, good wishes, etc. I think I'm feeling somewhat better after the TKO by Alimta. My onc and I concluded that I cannot tolerate Alimta. That's for sure. So now it's one pill a day of Tarceva. We'll see how this works. Here's hoping for good juju for all of us...
  16. HI to all-- I just updated my profile to current status. So if you're interested you can check it out. After 5 cycles of Gemzar/carboplatin and some radiation I had my first Alimta treatment at end of June. I had a seemingly unrelated infection shortly after that so further Alimta was on hold until recently (Sep 13) when I received the 2nd cycle. Four days later I was knocked out with nausea, weakness, extreme SOB. Admitted to hospital with pneumonia on 9/21. Released on 9/28 after 7 days of IV antibiotics. Still weak. Still very SOB. I don't understand the extreme SOB. My counts are normal. My blood oxygen is near normal--93%. There has been no significant change in the pleural effusion. The pneumonia seems to be mostly gone. Has anyone else experienced otherwise inexplicable extreme SOB as a side effect of Alimta? It's beginning to look like Alimta is not for me. Would appreciate any informed feedback.
  17. Hi-- Afraid my experience with Alimta was too brief to be significant. I had my first Alimta treatment on JUN 28. Mild side effects--a little fatigue--mild nausea beginning 3/4 days after and lasting about a week. Mild rash mostly on arms. Chemo was halted due to an unrelated abscess infection on my butt--a huge PIA--literally and figuratively. Minor surgery. Antibiotics. Chemo recess still in process. Stable disease. Femur met now barely detectable. See profile for details. Best wishes to all bc
  18. Thanks to all for the kind substantive feedback. It helps to know I'm not alone in taking a hit from Alimta... Best wishes and regards...
  19. Hi Again-- Sorry I haven't been a steady correspondent. The good news is that I've been feeling well during the brief holiday from radiation/meds. Busy trying to squeeze a little more juice out of this life of mine. Last Tuesday--week ago today--I started Alimta encouraged by all the flack that it is supposed to be less toxic than other chemos. I was hoping for a soft ride--easy landing. Not quite so. On Friday--three days after infusion--I took a hit. Fatigue. Mild nausea. Bloated feeling. Sporadic joint pains. Headache. SOB. None of these side effects were as bad as the worst days on Gemzar/Carboplatin (usually days 3,4,5 after treatment). But they were enough to take the wind out of my sails--forced me to curtail some activities and plans. With the other drugs the after-effects were usually gone by day 6. I'd be back in action with good energy. That doesn't seem to be the case with Alimta. I'm still dragging *ss--fatigued mostly--still some joint pains--SOB on mild exertion. I'm going in for a B-12 shot on Thursday and a look at the bloods. I suspect the reds may be down, which has happened in the past accompanied by SOB. I don't like this low energy beat feeling. Of course I realize I should count my blessings. There are a lot of folks out there getting a lot worse beating than I am. Best wishes and regards to all...
  20. CharlieD-- Happy to hear you are doing well. I just updated my profile with the news that the MRI confirmed there is a metastatic lesion on L femur. The good news is that it is very small and no orthopedic intervention is indicated at this time. They're gonna zap it with some radiation between now and 6/1--then start me on Alimta and possibly a second drug with it. So treatment-wise I'm still riding in your dust. It is encouraging to learn your good results. All the best...
  21. I had my 4th Taxotere/Carboplatin treatment today. I am receiving this chemo weekly aduvant with radiation daily. Had my 13th radiation today. My understanding is that the adjuvant dosage administered with radiation is much lower than were it chemo alone. It is not really systemic chemo when administered in this fashion but is supposed to add some juju to the radiation. So far I seem to be tolerating this treatment well. I was a little fatigued and slightly nauseous over the past weekend. I don't think I was drinking enough fluids. It seems to help ifyou really pour in the fluids with this stuff. I try to stick to water. It may be a little counter-intuitive but for me the nausea is relieved by eating. It reminds me of sea sickness in that sense. I used to do a lot of ocean sailing. All the old salts said if you felt a little off in heavy seas, eat. Worked then. Seems to work now. The Taxotere is definitely thinning my hair. Oh well...
  22. I've had SOB while undergoing chemo. It seems to come and go. Among other things it is affected by low red blood cell count. My onc says if hemoglobin count is less than 12 (I think) you need medication to increase the reds. They're the ones that carry oxygen to the whole system. Makes sense to me that if oxygen is low the body will ask the lungs to breathe harder. I was really short of breath last September when I was first diagnosed. Actually that was what got me to the ER. I thought I was having a heart attack. It turned out that I had a large pleural effusion. Essentially fluids had accumulated in the pleural cavity occupying the space that the lungs need for expansion. So I was running on empty. After they drained the PE and administered treatment to prevent recurrence my breathing improved to something approaching normal. I can walk a mile or more on flat terrain without tiring. Hills and long stairs are a challenge.
  23. Onc just left a voice mail that the suspect spot on my L femur is indeed a small lesion. I'm seeing him on Monday. He says it doesn't present any immediate risk. He is referring me to an orthopedic type to explore surgical options. Don't like stewing on this all weekend. I need to find some amusing distraction...
  24. MaryAnn-- Thanks. Congrats on the years. Cool dog. Like you I found with earlier chemo that there is less nausea with something in the stomach. I get the pre and post anti-nausea stuff. The post seems especially helpful. It's actually three pills for days 1/2/3. A Merck Rx product marketed under "Emend." I don't own their stock--just my gut talking. Cheers...
  25. Thanks for all the feedback. Donna G--congrats on 7 years. This I like to hear. After a baseline audiology exam that showed a minor hearing loss on the trebles typical for my age, they suggested a change in chemo drugs and administration. I have also had tinnitus for many years unchanged by treatment so far. We went from etoposide/cisplatin @ 3 weeks to docetaxel/carboplatin 1 @ week. Supposedly the carboplatin is more kindly to the ears and is a better combo with docetaxel than with etoposide. The weekly administration is designed to maintain a more stable chemo platform during radiation treatments. It may also lessen the side effects since the weekly dose is less than the dose @ 3 weeks. After reviewing the literature I saw no reason to object to this change or ask for another opinion at this time. I haven't heard the reading of Monday's femur x-ray yet. Mildly concerned of course. We'll see. Otherwise treatment thus far seems to have positive results. My breathing is easier. No pain. Very little congestion or wheezing. So I'll stay the course for now. Regards and best wishes to all...
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