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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2008Radiation for bone mets, 1 week update.
After the Planning Session using their GE Lightscan, Monday AM and clearance to proceed from JHU, I started the first of 14 palliative radiation sessions on Inova's Trilogy linear accelerator. I was on 4 mg decadron 3X day and 10/235 percocet 2X day over the weekend. That kept me mobile and able to work. The treatments are in the afternoon so I was able to work a 2/3rds day every day this week. The treatment, like all external radiation is completely painless. You not feel a thing as the high energy radiation breaks the cancer's DNA. The MRI showed structural changes in the bone. They showed the MRI to me but I do not have the medical vocabulary to repeat. Essentially, the PCa is in alternating vertebra. The bones look different, and are expanding against my spine. Two sections of nerve look "pinched". It hurts like hell to bend or move. It's not bad if I don't move. The decadron helps, the percocet really helps. 1 hour after taking both, I can walk and appear normal. They are going straight in the front and back with the radiation. On Thursday, I had severe nausea and heartburn, as Inova cautioned. They had given me 2 prescription anti-nausea samples to take, if I needed them. I did. I woke up gagging Thursday night. The next day, I got a bottle of OTC Zantac-150. They said it should work as well as the script stuff. It has. I'm taking it 2X a day and feel little discomfort. I've tipped my diet toward softer foods, oatmeal, milk, bananas, mac and cheese, chicken noodle soup, I'm taking a stool softener with each meal, OTC again. Inova says that my bones are at risk to breakage and to go easy. Step carefully. There have been incidents where a misstep, walking too hard, has shattered a vertebra. I got the message, no break dancing for me. Inova says that after the radiation, my bones will strengthen, the pain will abate, and in many cases, the PCa does not return to irradiated bones. JHU has me on fosamax, I take OTC calcium supplements w/ D 2X day. JHU is in the loop. They will put me in the taxotere IL-6 trial after the radiation. I'm guessing some time in April. I'm hoping that the taxotere and IL-6 antigen will slam the PCa, hold it off for a long, long time. This was a major set back for me but I could see my PSA climbing, doubling time of 1 month. JHU and Inova both mentioned that taxotere often works "better" with patients with my PSADT profile. I guess it's because it's more like a normal cancer. -KH It sounds like you and your doctors are waging a good battle against this beast. Having an identifiable and somewhat quantified target has obvious pros (e.g., takes a lot of the guesswork out, provides serious motivation) and cons (obvious from your post). Good on ya, and good luck. I.P. > It sounds like you and your doctors are waging a good battle against > this beast. Having an identifiable and somewhat quantified target has > obvious pros (e.g., takes a lot of the guesswork out, provides serious > motivation) and cons (obvious from your post). Good on ya, and good luck. > > I.P. Thanks. These are top guys backed by teams that know their job. I should have mentioned my gang tattoos. Last Monday they put alignment marks, just dots on my hide. Before treatment, the techs add circles and cross-hairs using magic markers for their laser targeting. Every day, I try to come up with a new line. "MS-13? I'm in another gang." "Hey, that's a butterfly, I wanted you to draw a manly dragon." "What, what? Property Item 353 of Inova." "If found, drop in any mailbox." "marked down - $15.95" "USDA choice - Porterhouse!" I ain't going down easy and I'm not letting this setback bother me. It's really hard to get off the treatment table but I tell the techs, any day now, I'll do a back flip and an Olympic gymnastic dismount. Not today but soon. -KH > "USDA choice - Porterhouse!" > I ain't going down easy and I'm not letting this setback bother me. kh, from your very first postings it was obvious that you were a fighter and were not going to do down easy. Keep the bastard at bay and, as someone posted recently, delay delay delay. Every time you go online you can find new stuff happening, no cures yet, but ways to fight the SE's from the cancer and from the ADT and other drugs. The numbers of trials are encouraging. One fine morning you and I will go to this newsgroup and there it will be, the magic bullet at $1.95 per month, already on the shelf as an over the counter something or other!!! Hey, as long as I am dreaming, I am going to dream big. This magic drug will bring Willie back to life too, reduce weight, and make us all look, act, and feel 20 years younger!!!! Until then, keep up the fight and I'll do my best to do the same. There sure are a lot of us in this boat together. We may not be winning the overall war yet, but we are winning some of the battles. That's the delay delay delay thing. Keep up the fight, you are in my prayers. > The numbers of > trials are encouraging. One fine morning you and I will go to this [quoted text clipped - 3 lines] > bring Willie back to life too, reduce weight, and make us all look, > act, and feel 20 years younger!!!! That is not that far fetched. It won't cheap at first but that is one reason that I'm watching my health, keeping my job, and paying for medical insurance. It hurts to get up and walk (didn't hurt a few weeks ago but it hurts now.) I still walk as much as possible. I could slack off my work hours. I'm not. In fact, I lost only 1/3 time each day, the treatment week at the end of Feb. If my back allows, I hope to increase my hours to normal for March. Friends have suggested starting the paperwork for "social security disability." I have no idea what that means but I will look into it. They say the paperwork is miserable but if I'm doing it now, and it's simply setting it up now, I can do it. I will file forms to have access to more financial resources to toss against the problem when I need it. Add government insurance to maintaining my private insurance, my savings. The magic bullet might be $50K (see reports on PROVENGE and GVAX on the investment sites) but if insurance covers treatment with a $20 co- pay, WE GOT IT. Close enough to $1.95, especially given inflation. No kidding, I saw someone pay $20 plus tip for a medium pizza. > Until then, keep up the fight and I'll do my best to do the same. There > sure are a lot of us in this boat together. WE are going to beat this and we are going to whoop it up. I managed an invite to a party last week and managed to snare another in April. I'll be helping cook for the April one. The theme is "Thanksgiving in Spring". Whacky huh? You know how it's a bear to get everyone together for Thanksgiving in November? No one really wants another invite for turkey. Some people drive hundreds of miles to 2 or 3 relatives homes on Thursday, and to eat yet more turkey. They're sick of Turkey. It's everywhere. Why? Why do it like that? We picked a day in April. I'm helping host a traditional Thanksgiving dinner. Big ol' roast turkey. Pies, pies, pies (and no fighting for the ingredients at the Safeway). Spring berry pie. Banana cream. Apple. Coconut custard. Easy driving, no battling traffic or icy roads. No one under pressure for Christmas shopping. No black-Friday hype. Swing on by on Saturday afternoon. We already have request from one of the guests for the turkey bones for soup. Sure. It'll be a small group so we'll have a bunch of those one-way plastic containers for leftovers for them. I'm guessing a couple pounds for each, turkey, potatoes, green beans, oyster stuffing, half a pie or a whole one? Wine will flow like water. Local whiskey. I'll spike my pomegranate, blueberry, ginger, green tea punch. Twist 'o fresh mint. I'll be starting the first chemo infusion about then, so lets rock 'n roll. -kh good times > > The numbers of > > trials are encouraging. One fine morning you and I will go to this [quoted text clipped - 69 lines] > > -kh good times I LIKE you spirit, man. You must come from hardy, pioneering stock. Keep the chin up and defend at all costs. :-D Take care. Regards. Bodie. (will light a candle in chapel for the group) -- "Certainly there is no hunting like the hunting of man and those who have hunted armed men long enough and liked it, never really care for anything else thereafter. You will meet them doing various things with resolve, but their interest rarely holds because after the other thing ordinary life is as flat as the taste of wine when the taste buds have been burned off your tongue." Hemingway. > ... > This was a major set back for me but I could see my PSA [quoted text clipped - 3 lines] > with patients with my PSADT profile. I guess it's because it's > more like a normal cancer. kh, It is my understanding that taxotere, like most other chemotherapeutic agents, attacks cells that are dividing. That's why it can make patients hair fall out and cause stomach upset - because the hair follicles and the stomach lining cells are rapidly dividing. When given in large doses, it's often given with other drugs to mitigate the nausea side effects. Any hair loss will grow back, and any nausea should clear up at the end of treatment. If your cancer is growing fast, as indicated by your rapid doubling time, that may mean that the cancer cells are dividing rapidly. In that case, taxotere may do more good for you than it would for a patient with a slow growing cancer. Apparently, prostate cancer cells will eventually acquire an immunity to chemotherapy. So, as with hormone therapy, it works for a while, then becomes less effective in future treatments. But how long it works is different for different men and there is a possibility that you'll be one of the men who benefits a great deal from it. Here's hoping it well be really effective. There are other trials at Hopkins, including one for Revlimid, an anti-angiogenesis drug that is showing great promise. I'm hoping that, if and when the taxotere stops working, you'll be able to try some other drugs that will keep things going for you. Best of luck. Alan > I was on 4 mg decadron 3X day and 10/235 percocet 2X day over the > weekend. That kept me mobile and able to work. << Great descriptions redacted >> Are you able to do your programming from home? > Are you able to do your programming from home? Two of my bosses have given me small assignments that I can work on at home. Mostly though, I'm just taking the reduced income. I don't have the stamina to do more. After talking to Inova on Monday, WE, the doc and I, decided to taper down on the drugs. I am really eager to get off the decadron. It helped, I needed it but it causes muscle loss and physical wasting. This week, I was breaking the 4 mg pills in half, taking 2 mg 2X a day. I'm easing off the percocet. The back pain is still pretty bad when I get up in the morning. It's a struggle to make that first morning tinkle. I'm taking 2.5 mg of percocet (a 5 mg broken in half) at each meal. I chase that with stool softener, colace I think, as percocet will stop you up. My other big addiction is Zantac-150 OTC. Inova's Trilogy has given me a sunburn on the inside, acid reflux, heartburn, that comes with this territory. I am losing about a pound a day. I don't know if it's the radiation, the drugs, or just feeling too bad to eat much but my weight is down 7 pounds from the start of treatment. I've developed a distended belly so my pants tend to fall down when I walk. Inova has treated me 10 times with their Trilogy. During the day, the pain is much reduced and I am more mobile. The improvement this week was less than last. The acid reflux and heart burn are worse but tolerable. I'm eating much smaller meals but it's almost a continuous feeding. I'm eating good stuff too. Sausage, fish, homemade soups, fruit, soft- cooked vegetables, butter-scrambled eggs, cheeses. On my way back from the last zap of the week, I stopped at the 7-11 and scored a pint of Haagan-Dazs. I'll have two big scoops of ice cream mixed with milk later tonight. I'll make my ginger, green tea, blueberry, pomegranate drink in a few minutes. I brew up a quart at a time and keep it in the fridge. -kh Other than the facts, it sounds like a great life! :-) >> Are you able to do your programming from home? > [quoted text clipped - 44 lines] > > -kh I've completed the 14 day treatment protocol on Inova's Trilogy. My initial sense was that the improvement this week was much less than last. Not true. Last week, I was taking twice to three times the percocet as well as decadron (a big bang of a steroid, it reduces the inflammation that presses on the spinal nerves). Last week, I was crawling to the head in the morning. It hurt too much to straighten up and walk upright until the morning percocet kicked in. This week, I could pull myself up and walk. I am stiff and my legs are weak but the knife in my back wasn't there. I still fear the knife and get up gingerly, "OK, I'm up. Now I'm walking. OK. I can do this." After weeks of someone twisting a knife in my spine, it's a surprise when it's not there. I'm down to 2.5 mg percocet and 200 mg ibuprofen in the morning and again in the evening. I stopped the decadron last Friday. I'm still stiff and if I bend wrong, there is discomfort but not excruciating pain. This is a big improvement. The other improvement is that my head is clearer and I've been able to do more work this week than last. The one negative is that even on a Zantac-150 twice a day, chased with a baking soda drink, and slamming down the Gaviscon, I have heartburn and acid reflux to beat the band. It is worse this week than last as the radiation has tormented my poor stomach. Inova says that the heartburn will fade over the next week and my back will continue to improve over the next month. Full strength won't return for 2 months, so no full contact sports. I'm sleeping about 10 hours a day. The radiation causes fatigue. I thought I was just doped into a stupor by the percocet. Inova says the fatigue will fade over several weeks. Thinking back, the bone mets gave about 3 months warning. My back felt stiff and there was vague back pain but not immediately in the spine. It felt like it was in the back muscles. It wasn't until about a month ago that the dull, muscle ache, turned into a knife in my spine. In late February, I suddenly had several incidents where I could not stand up. It happened that fast. My January PSA was 21. Given the 30 day doubling time, I'd estimate my PSA was 40-80 when the bone mets became a crisis in February. This Monday, my PSA came in at 12.8, whacked down by the Trilogy. -kh The adventure continues. All good news, kh! Should be able to enjoy the spring at this rate. > I've completed the 14 day treatment protocol on Inova's Trilogy. > [quoted text clipped - 54 lines] > > -kh The adventure continues. > All good news, kh! Should be able to enjoy the spring at this rate. I'm already enjoying life. Week 1, I could not make it to the bathroom in the morning. Week 2, I made it by crawling or wincing in pain. Week 3, I was walking gingerly but I made it. I've finished off one pint of Haagen-Dazs and have another in the freezer. I'm putting a big scoop in my morning coffee along with 1/3 whole milk. I haven't decided whether to have sausage and eggs here or hit the breakfast bar at work. Either way, I'm going easy on the sausage and extra on the scrambled eggs. Here's something I don't understand. In the last month, willie has been stirring. Nothing big has come up but there are definitely feelings. I've been on Lupron for a year. Is that a sign of spring? -kh "or maybe I've been reading too much New York political news." > Is that a sign of spring? Probably the Lupron isn't working on the testosterone anymore. I forget, did you have your T tested? > Probably the Lupron isn't working on the testosterone anymore. I forget, > did you have your T tested? Not yet. I'm 1 week post treatment, radiation to mets in the spine. The heartburn and acid reflux are better but still there. I'm still taking a Zantac-150 in the morning and evening. Still eating gaviscon, 3 or 4 a day. My back is better. I'm off the decadron but take a half a 5 mg percocet in the morning and evening. If I'm just sitting. I feel fine. Walking and getting up require effort and there are geezer noises, "OOF!" and grunting. I've been able to make the head in the morning w/o leaks for 3 weeks. My weight is way down. I saw 174 on the scale the other day. I started this at about 185 a month ago. I eat half portions and feel stuffed. Food is gradually starting to taste good again. During the palliative radiation treatment nothing tasted right. I don't know if it was the acid reflux or some bizarre side effect of the meds but salty food burned my tongue, sweet was too sweet. Things either tasted bad or had no taste at all. I was living on vanilla milk shakes, Campbells beef noodle soup, cereal with cream, fruit, banana's, grapes, tomatoes, scrambled eggs. Tuna and mayo on white bread. A baked potato with a lot of butter was OK. I ate almost no meat, simply could not choke it down. I had one Hebrew National hot dog a week. I usually love those things. Today, for the first time, I can think about food. My strength and stamina are returning slowly. Good news, today is party day, a shindig at a fancy waterfront estate. Looks like it takes about week after radiation to hit the upswing. I'm ready to rock 'n roll. -kh thinking about fried shrimp, steak, chocolate cake with that dark frosting. > I was living on vanilla milk shakes, Campbells beef noodle soup, > cereal with cream, fruit, banana's, grapes, tomatoes, scrambled eggs. [quoted text clipped - 4 lines] > -kh thinking about fried shrimp, steak, chocolate cake with that dark > frosting. kh, I know your trying to get the calories to keep your weight up, but you want to be careful about cholesterol. Dr. Strum says that PC "thrives" on cholesterol, especially LDL. You might want to pull back a little on the red meat and dairy. Are you taking any fish oil supplements? It's all fat grams but helps with cholesterol. John > You might want to pull back a little on the red meat and dairy. Are > you taking any fish oil supplements? It's all fat grams but helps with > cholesterol. I thought about those and other dietary factors too, John, but then I looked at the bigger picture and saw overriding factors. I hope I have two things kh has when I'm at that point: a great attitude and an appetite. If I do, I'm going to have tables reserved every day at my favorite pizza and buffet and hamburger and BBQ and pie restaurants. Hell, I might even see what all the fuss is about smoking, considering how long it takes to get lung cancer. OTOH, one dietary precaution always worthwhile is fiber, of which I see very little in his new diet; I do NOT want to fight constipation while I'm dealing with everything else. I.P. This is one of the best threads I've read. kh, you're an inspiration and a reminder that I need to keep on truckin. Rich > Looks like it takes about week after radiation to hit the upswing. > I'm ready to rock 'n roll. > > -kh thinking about fried shrimp, steak, chocolate cake with that dark > frosting. Great!! Glad to see the rebound. > Great!! Glad to see the rebound. At two weeks, the acid reflux is fading.It's still uncomfortable and I got another bottle of Zantac-150 and more Gaviscon. My stomach sticks out and looks bloated but not as bad as 2 weeks ago. My back is a lot better. It's a dull ache now and I haven't felt the knife in my spine for a while. If I'm sitting still, I feel fine. I'm tired all the time. I sleep 10 hours a day. During the month before treatment and during the radiation, I felt fragile, weak, old. I walked bent over and shuffled. I have never felt like that before. 30 years ago, I lived in a bad neighborhood. There was an old man who used a walker. The day I moved away, I heard that punks used to lay in wait for him, knock him down, and steal his grocery money. After that I had fantasies of stalking them. That was when I was 30 and could do 20 pushups with my left arm. For the last 2 months, I was that old man. Getting out of my car at night, in my safe, upper middle class neighborhood, I found myself looking around. Some women and the frail do that, glance around, is there anyone there, is it safe? Get into the house and lock the door. Remember Hughie's stories of the thugs, his bicycle, and how he fought back. Aging, getting weak from the disease, loss of strength are a big deal. We're men. The decadron has taken 10 pounds of muscle off my arms and legs, maybe more. Maybe some of the weight loss is hidden by the bloating of my stomach. My arms and legs are thin. I am not putting up with this. Now that the pain is ebbing, my bones are strengthening, stamina is returning, I am not putting up with this. I am easing into an exercise program, the bones in my spine are still healing but I am doing knee bends, slow reps with light hand weights, not pushing it but enough exercise to pull me back. Inova said 6 weeks for my back to heal. I have 4 to go. I'm eating more protein, not an excessive amount but tofu, ground beef, eggs. Calcium, both supplements and calcium foods like broccoli, milk. I don't know what the taxotere will do to me but I will be as strong and fit as possible when they slip the IV in my arm. I'll keep my weight down and hopefully exchange the bloated belly for muscle on my arms and legs. Steve K says maybe 2015 for the silver bullet. Fine. Just more time for me to raise cash for that treatment. Gourd D is doing great and I can too. This thing tried twice to get me. I am not giving it a third chance. Inova slammed it with their Varian Trilogy. Now it's JHU's turn with taxotere and the IL-6 antigen. -kh spring is here, rebirth, renewal, the cycle of life. >At two weeks, the acid reflux is fading.It's still uncomfortable and I >got another bottle of Zantac-150 and more Gaviscon. My stomach sticks [quoted text clipped - 32 lines] >are strengthening, stamina is returning, I am not putting up with >this. KH (I see you in capital letters only..) You are not putting up with this. ... Never mind a guy who is looking to get back to 30 push-ups on one arm (OK we'll accept 20 in view of circs) but when somebody with your indomitable record shows the really tough side of being a man - a massive strength of will - then my advice to your PCA is - START RUNNING! Mind over matter - it beats it every time. Or as Mark Twain said, and he must have had you in mind, " It's not the size of the dog in the fight, it's the size of the fight in the dog." Your big dog better get running! >I am easing into an exercise program, the bones in my spine are still >healing but I am doing knee bends, slow reps with light hand weights, [quoted text clipped - 18 lines] >Inova slammed it with their Varian Trilogy. Now it's JHU's turn with >taxotere and the IL-6 antigen. That'll give you all the time you're buying yourself for the Silver Bullet. I think Steve K may have missed the exponential factor in the recent explosion of novel research on Pca genes. Much, much less than fifteen years, I would guarantee. Halve the time. Don't forget to post back to me in six/seven years KH, to point out that even then I wasn't so clever, I'd overestimated the Q.E.D. time! >-kh spring is here, rebirth, renewal, the cycle of life. Absolutely. Have you watched the symposium on http://tinyurl.com/266q9u (from Steve Jordan)? That will confirm it for you. All about how effective taxotere is - a piece of cake actually. It comes from a natural product the bark of a tree - so it must be good for you. And it's just another hormone therapy, side effects handleable. You'll enjoy watching. That'll be the one more growl from you KH which will send the bastard slinking away with its tail between its legs. Don't need to wish you luck, old mate, you make your own. Best wishes to everybody. MikeHi > I think Steve K may have missed the exponential factor in the > recent explosion of novel research on Pca genes. Much, much less than > fifteen years, I would guarantee. Halve the time. Don't forget to post > back to me in six/seven years KH, to point out that even then I wasn't > so clever, I'd overestimated the Q.E.D. time! How I hope you are right!! My personally arrived at (and only slightly scientifically arrived at) ETD is 10/12/12... or was it 10/10/12. I forget, but what's a couple of days? If we can halve the cure time, I'm fat and happy!!! But, it is 2008......  SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum >> I think Steve K may have missed the exponential factor in the >> recent explosion of novel research on Pca genes. Much, much less than >> fifteen years, I would guarantee. Halve the time. Don't forget to post >> back to me in six/seven years KH, to point out that even then I wasn't >> so clever, I'd overestimated the Q.E.D. time! And Steve K replied.. >How I hope you are right!! My personally arrived at (and only slightly >scientifically arrived at) ETD is 10/12/12... or was it 10/10/12. I forget, >but what's a couple of days? If we can halve the cure time, I'm fat and >happy!!! > >But, it is 2008...... Steve count on it - you're gonna be very fat (if that's your happy mode!) and very happy. And don't forget too the spread in the UK (US too??) of centres where terminally ill cancer patients are given new likely drugs - as I remember it was suggested that this could halve the time of testing before approval. That alone's a big, big plus. The wonderful volunteer lady I saw when it was on the news was absolutely thriving! (See Rosbif's post above). > But, it is 2008...... Another week. Three already. We're all different but I'm reporting that radiation for bone mets takes about three weeks to clean out the junk and for the side effects to ebb enough for a normal life. I'm still on Zantac-150 but didn't take the gaviscon last night. My back is stiff but my plumbing (#1 and #2) are working better. Still not perfect but better. I am not ready to break dance or enter a Tai-Kuan-Do full contact match but I can walk, climb stairs, and turn to check out tall women, darn, they are starting to look good. I asked JHU for my Testosterone, they don't have the results yet. My next Lupron shot is in a month. I'm taking a half a percocet 5/325 in the morning and evening. I carry more pain killers and the decadron with me, in case I need it. I haven't. I've been working full days and have been effective at my work. This is a big change from a month ago. My head is clear and I'm strong enough to walk a mile or two each day. Even better, I'm tending to my personal life, laundry, paying bills. I bought some computer parts off eBay. I got my taxes done, signed, and mailed. I'm getting money back for once. The big party in a week? We scaled that back because three of the guests are traveling but it's still on. I've got some cash, I'll head over to the wine store and buy a couple bottles for the party. I don't know anything about wine but the proprietor will help me get something better than Two Buck Chuck. What I'm saying is that at radiation+3 weeks, normal life seems possible. I'm not there yet so don't rush me. I can do this. See, I can get out of a chair without grunting. Don't give me a pity- look. I've gone from sleeping 10, 11 hours a day to 8 or 9. Food tastes better but whoa, what happened to the prices? I've been out of it for 2 months and someone raised the prices of everything. I'm using my hand weights, I'm stretching. According to Inova, I have another 3 weeks before the bones heal fully. My stomach still aches and if I eat half a meal, I feel full. My weight has stabilized and might be climbing a little. I'd like to keep my weight about this level but lose the belly and build up my thighs and arms. -kh > I'm still on Zantac-150 but didn't take the gaviscon last night. > > -kh Zantac 150 was inadequate for me also. Nexium 40 worked extremely well but my oncologist felt that Prevacid 30 mg BID for me - it works adequately - not as strong as Nexium. Another thought, would higher intake of calcium help? Check with your doc if these would work better for you. Lud > Zantac 150 was inadequate for me also. 1 month update. Still on the Zantac-150, still have an "uncomfortable" stomach, my back is still "stiff". The week-over-week improvements. I do not need the pain killers as much. I'm still taking one percocet 5/325 a day, breaking the pill in half for the morning and evening. I don't "need" it as much and might drop it in another week. I feel like eating again but can only handle small meals, which is fine. The fatigue, a side effect of radiation, is fading. I'm sleeping 8 or 9 hours a day, down from 10 or 11. I'm working full days now and getting work done. I'm walking about 20 minutes a day now. Also playing with 5 pound hand weights. Went to JHU for scans. I saw the bone scan, it's not a pretty picture. There are new hot-spots. Did the paperwork for the taxotere plus IL-6 antigen (they call it CNTO) trial. I am really looking forward to that. The pain from the bone mets came on fast. Inova's Varian Trilogy knocked it down but the recovery has been slow. I'm at the 80% recovery point but much, much weaker because of side effects of the treatment, the medication, and 3 months of lower than normal physical activity. That's 80% physical recovery where the criteria is how far can I walk, how much can I lift, how long do I sleep. Cognitive processes and my ability to work roared back last week. I wrote an analysis on a technical paper in 30 minutes on Thursday. Then my boss, his #1, and I picked both the paper and my analysis apart. My focus is getting my stamina and strength up, working my arms and legs. I've got plans for the next year which include lots of fun, a vacation, improving my quality of life, and getting a lot of work done. -kh >> Zantac 150 was inadequate for me also. > [quoted text clipped - 4 lines] > > The week-over-week improvements. Thanks for these updates kh. I hope you don't tire of being termed an inspiration. > Thanks for these updates kh. I hope you don't tire of being termed an > inspiration. I'm a passive observer in this. The docs, my primary care guy who is an absolute incredible, perfectionist, the radiation oncology team at Inova, and the medical oncology team at JHU are doing the heavy lifting. My log details what happened and what it felt like. Basically, I do what they tell me and little by little, I've gotten better. I was surprised at how fast the bone mets came on and how painful it was. I have never felt pain like that before. The original dose of percocet, 10/325 every 4 hours with decadron 4 mg got me through that. I did not expect the recovery to take this long. I don't know where I got the idea from but I thought that the radiation would have me feeling fine in a couple weeks. One month after the end of treatment, I'm still stiff and my stomach is uncomfortable. I'd call this "tolerable" and in "some discomfort". In my head though, it's a lot different. If I'm just sitting, I feel no pain and imagine that I could leap up, put on some sweats, and play a half hour of touch football. I can't but in my head, I can. I figure, realistically, in another month, I could. Maybe. I'm writing this for everyone. Don't let bone mets sneak up on you. Apparently, my PCa is a fast growing one, 30 day PSAD. It's also one that produces a low PSA. At PSA 20, I'm in trouble. At PSA 60, it's killing me. The radiation wasn't fun but I got through it. JHU is getting their taxotere/IL-6 antigen ready. That combination has driven some guy's PSA to zero and held it there (too new to say how long that will last). Meanwhile, I have another party tonight. My plan is to compress 20 years of living in the next 2. It's to accomplish the things that I've wanted. If they "cure" me, oh well, I'll have to find more things to accomplish. -kh >> Thanks for these updates kh. I hope you don't tire of being termed an >> inspiration. [quoted text clipped - 3 lines] > Inova, and the medical oncology team at JHU are doing the heavy > lifting. Horse sh.t! Oops, did I say that out loud? You may be observing what your doctors are doing to keep you alive, but your descriptions of bone pain and stomach ailments are very valuable to us. You didn't have to do that. Your zeal to get WORK done and even learn new skills is very well described and ... well.... inspiring. Your description of parties and other QOL issues is perhaps something that will save one or two here from suicide. And, you are helping us with our plans. You are telling us of yours and of what you accomplished and will, I'm sure, tell us when you failed to accomplish something you had intended. For me, that tells me that when I'm in your spot, as surely I will be, I will not plan for touch football if you don't make it in a month. And, you do all of this without offending a single, solitary individual. You ARE inspiring and I think I speak for all but the trolls when I say that your prose are greately appreciated. > In my head though, it's a lot different. If I'm just sitting, I feel > no pain and imagine that I could leap up, put on some sweats, and play > a half hour of touch football. > > I can't but in my head, I can. Check out lucid dreaming. We don't need no steenkin' body to play football, and in our head we -- and especially you -- can beat any team in the NFL by ourself. I'm going to be thinking of you when I reach the ground you're plowing. Oops ... poor choice of metaphors. ;-) Keep up the inspiring reports. Not only might they help some of us through the stage you're in, but it might even help keep some of us kicking for a few extra months. I.P. > Check out lucid dreaming. We don't need no steenkin' body to play > football, and in our head we -- and especially you -- can beat any team > in the NFL by ourself. I'm going to be thinking of you when I reach the > ground you're plowing. I don't think that you, Steve K, or most others reading this will get HERE. With all the trials, vaccines, given the progress in medicine, something will come up long before you need it. The trick is to do what both of you have been doing, that is, keep to a good diet and get plenty of exercise. The PCa might be messing with me but I'll mess with it back. I'll bet it was surprised when Inova unleashed their laser guided Trilogy on it. Shriveled up and died in the beam. Pretty soon, JHU will mix up a potion that'll have the PCa gagging and choking. I'll swing by the grocery store for more tofu, fry it up in hot pepper oil, wash it down with my green tea, berry juice. -kh > I don't think that you, Steve K, or most others reading this will get > HERE. With all the trials, vaccines, given the progress in medicine, > something will come up long before you need it. Cancer pts have been hearing that for decades. I'll believe it when I recur next year but fix it with a pill and windsurf into my '90s. I.P. On Apr 15, 10:03 am, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote: > Cancer pts have been hearing that for decades. I'll believe it when I > recur next year but fix it with a pill and windsurf into my '90s. > > I.P. Along with the permanent moonbase by 2000, controlled fusion reactors providing unlimited energy also by 2000, cars driving themselves guided by radio waves beamed from cables buried in our roadways "no later than 1970" as promised in a 1955 GM Autorama auto show. Many, if not all, of the rosy predictions in medicine come from those applying for grants to continue their research. No money for the sour apples. Dave Perry >On Apr 15, 10:03 am, "I.P. Freely" <fuhgheddabou...@noway.nohow> >wrote: [quoted text clipped - 12 lines] >apples. >Dave Perry Maybe this is the real thing: http://www.wired.com/medtech/health/news/2008/04/kanzius_therapy or more snake oil... On Apr 15, 10:03 am, "I.P. Freely" <fuhgheddabou...@noway.nohow> wrote: > Cancer pts have been hearing that for decades. I'll believe it when I > recur next year but fix it with a pill and windsurf into my '90s. > > I.P. Along with the permanent moonbase by 2000, controlled fusion reactors providing unlimited energy also by 2000, cars driving themselves guided by radio waves beamed from cables buried in our roadways "no later than 1970" as promised in a 1955 GM Autorama auto show. Many, if not all, of the rosy predictions in medicine come from those applying for grants to continue their research. No money for the sour apples. Dave Perry In 1955 IBM predicted no more than 15 computers would ever be needed worldwide. Sometimes people are wrong. > Cancer pts have been hearing that for decades. I'll believe it when I > recur next year but fix it with a pill and windsurf into my '90s. There are certainly overly optimistic predictions as well as out right frauds. That comes with this territory. The story does include vague predictions that something will come up in the next ten or twenty years Treatments that are available today such as radiation from a Varian Trilogy, ADT, and taxotere offer us relief and years of life. This is not a guarantee but it is a good bet. Those treatments may give us 2, 3, or 4 years of quality life (more in some cases). That time takes us to GVAX, PROVENGE, IL-6 antigen (CNTO) or other treatment currently in clinical trial. None of these are guaranteed cures either, but we are fighting for each year. All I'm saying is that I expect we'll win this fight. -kh WE will win. WE. > I don't think that you, Steve K, or most others reading this will get > HERE. I think you're right about I.P. I hope you're right about me. But, my RT failure was 2003. Based on current stats, I should be pushing up daisies by 2009. Admittedly, I haven't gone refractive yet, so I should have at least two more years, but that's only 2010. By all accounts, I need to make it to 2013 to get the new ADT and that's conservative. Can I stretch it out another three years? I very well might come up one short. SignaturePSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 PSAD .056 years Lupron 07/03 (1 mo) 8/03 and every 4 months there after PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years Casodex added daily 07/06 PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 Non Illegitimi Carborundum > Admittedly, I haven't gone refractive yet, so I should have at least > two more years, but that's only 2010. By all accounts, I need to make it to > 2013 to get the new ADT and that's conservative. JHU tells me they have many tricks in their bag now and more on the way. I went refractive LAST fall and this January bone mets decided to show me who's boss. Well, between my primary care doc, Inova, and JHU, we've got me walking and climbing stairs again. Where you are, it's a matter of tracking your PSA, keeping your insurance current, and working with your docs. Keep watch, be ready to whack it down if it gets uppity. -kh betting you'll be collecting stats in 2020. > be ready to whack it down if it gets uppity. Well, now, which is it? Are we supposed to whack it UP in the hopes it WILL get "uppity", or whack it down if it DOES get uppity? I'm confused. I.P. > Well, now, which is it? Are we supposed to whack it UP in the hopes it > WILL get "uppity", or whack it down if it DOES get uppity? I'm confused. Yes, it depends on the meaning of "It". I was referring to PSA but I did have a dream last night that involved a comely older woman. -kh ... then I woke up .... -sigh- I'm doing a lot better. My back is still stiff. I've tried to touch my toes. I can get about 6 inches away. The strength in my legs is returning. The decadron had taken my muscle tone. I'm getting it back slowly. I can walk a mile and have started climbing stairs. My stomach is still slightly sour but with the Zantac-150, it feels almost normal. I have a dark patch on my back. Radiation sun-burn. It doesn't hurt like a regular sun burn, Inova says it will fade over 6 to 9 months. I've started doing extra work for my job. Not as much as I did a few years ago but more than a full day. I'm feeling almost normal. This is the best I've felt in 4 or 5 months. I'm still taking a little narcotic pain killer and 5 mg of pregnisone 2X day. I plan to stop the pain killer this weekend. -kh > I'm doing a lot better. My back is still stiff. I've tried to touch > my toes. I can get about 6 inches away. [quoted text clipped - 17 lines] > > -kh All great news, kh. >> I'm doing a lot better. My back is still stiff. I've tried to touch >> my toes. I can get about 6 inches away. [quoted text clipped - 19 lines] >> >All great news, kh. Hi kh I can't believe I'm reading this, not least: >> I've started doing extra work for my job. Not as much as I did a few >> years ago but more than a full day. kh You make Phoenix arising look like a rank amateur. I don't put it down to your drugs at all, rather to your ice cream. I used to take some guiltily every night because I enjoy it - now I take it happily for my health. Dunno if I'll be able to copy your indomitable will-power though - no small thing in our treatment. Wonderful news kh, and I know there'll be more to come. My very kind regards MikeHi On May 9, 3:45 am, Mik...@anon.co.uk wrote: > will-power though - no small thing in our treatment. I don't think it's that, although I can be a butt-head. I think it's 2 things, one is not really having other options. What can I do but muddle through? The other is, something that I.P. alludes to. We're men. You take some woman who's been coddled and cared for all her life, lay hot flashes, joint pain, whatever on her. It's not something she's used to. She complains and rightfully so, waking up at night in a sweat, joint pain like a knife, would bother anyone. Well, maybe. Suppose I told you, hey Mike, lets shoot some hoops, sure it's 90 degrees and humid but I got $100 that says my bro's can take yours. Loser buys for everyone. That's snacks, brews, whatever the guys want. You in? You'd round up your best guys and come at us hard. Maybe someone would have a knee scrape. Everyone would be dripping sweat, dirty, and aching the next day. Rounds of drinks, pass over those Frito-lays. We call that, having a good time. As long as it doesn't involve a trip to the ER or setting bones, your guys would be bugging you, hey, when can we do it again? -kh >On May 9, 3:45 am, Mik...@anon.co.uk wrote: > >> will-power though - no small thing in our treatment. kh replied: >I don't think it's that, although I can be a butt-head. > [quoted text clipped - 22 lines] > >-kh Hi kh No way I'm going to lose $100 that easy! Up against you? Nahh. Not me. You're an original kh. You're a tough guy - and you've always found others - to follow, I'll bet. But there's something else to tough. There's moral courage. Or call it bloody-minded will power; or what you will. That makes tough. Your mates throwing the hoops might have it; or not. You've got it, butt-head. Undoubtedly. Other guys have got it here - advising other, never mentioning except as an oh- by- the- way, stuff they're going and been through. Whatever, kh let's keep hearing from you, I never miss it especially if i think I'm feeling a bit 'poorly', oh dear me! Viva!! MikeHi P.S. We ain't got no Frito-lays this side of pond.. On May 11, 5:43 am, mik...@anon.com wrote: >... You've got it, butt-head. Undoubtedly. Other guys have > got it here - advising other, never mentioning except as an oh- by- [quoted text clipped - 6 lines] > > P.S. We ain't got no Frito-lays this side of pond.. No Frito-Lays? Can that be? Type "Frito-Lays" into google. I found this thread: ************************************* Curry Flavored Potato Chips by Steve 3/09/2006 06:34:00 PM Lay's Curry Flavored Potato Chips Frito-Lay Canada offering new Frito Lay Potato Chips in new flavors. Curry (pictured) and Wasabi are the new flavors, and are offered in Toronto and Vancouver only. The company is making an effort to sell more potato chips to Asian consumers. Also, notice the small cartoon graphic of a happy face at the upper- left corner of the bag. This only seems to appear on the Curry and Wasabi flavors. At first it looked like the Maruchan symbol, but it's not. I don't recognize it as anyone else's brand. Anyone else know? Frito Lay's Shrimp Chips is also expected later on. 28 Comments: good god what a splendid taste idea!!! just wash down with several gallons of cold lager and you're away! WOW!!!!! , I tried these for the fist time while visiting Toronto from Los Angeles for a wedding .discovered this blog while searching for a retailer here in the LA area "Listen up Lays I want My Curry Chips". And i want them now pls pls. We went to see the Festival of lights in Vancouver, where the host had a bag of these curry chips. Sweet baby Jebus they were killer! We all went and bought a store out of them on our way back to the states. If they stop making Curry chips, I will go to their headquarters and kill myself on their front steps. They make my otherwise miserable life worth living. All hail Curry chips!! But seriously, folks, these are truly the best chips I've ever had, and I am quite paranoid that they're going to stop making them. I figure that it's not likely to become popular . . . ************************************** High fat, high carbs, high salt. What's not to like? There is no way that I could play sports today. Walking for 10 minutes causes me to breath hard. I can climb 3 flights of stairs. I can get out of a chair without using my arms. I could not do any of this 2 months ago. Here're more accomplishments. I slept through last night. That's 9:00 PM to 5:00 AM. About 1:00 AM I did get up, thought about going to pee but didn't. I woke up 100% dry this morning. I usually am dry but occasionally there is a little "moisture" or slight "dampness". It's not enough that I use pads but I don't sleep "commando" as a precaution. The real accomplishment was that I last took Oxycodone Friday night. I've been off the narcotic pain meds for a day and a half. In my mind, getting off painkillers, working a full day, sleeping through the night, climbing 3 flights of stairs is "like" playing aggressive sports. It's a push but it's what us guys do. A few months ago, when the PCa had my back in vise-grips, I suddenly realized what I.P.'s reports of his windsurfing, gym, weight lifting, really meant to me. It was all about pushing myself a little more, not to destruction but to dip into the pain and initiate the rebuilding and strengthening. I don't know how far down the chemo will push me but I'll be pushing back. I don't have a choice. -kh > On May 11, 5:43 am, mik...@anon.com wrote: > [quoted text clipped - 18 lines] > Toronto and Vancouver only. The company is making an effort to sell > more potato chips to Asian consumers. Yuck, gross!! Only in Canada, eh? Well, in case you didn't notice when you were up here for that wedding, those two cities have the largest East Indian population, hence the curry flavour. Also the largest Chinese populations as well. Btw....you will confuse the hell out of UK Mike.....over there potato chips are called *crisps*. Brit Chips are those ones that go with your hamburger (called French Fries in the US). Up here they are just chips and fries respectively. The wonders of speaking English, grin. Of course, ours is culled from both.....ergo, it is the best. 8-)) Heather >> On May 11, 5:43 am, mik...@anon.com wrote: >> >>> MikeHi wrote: >>> >>> P.S. We ain't got no Frito-lays this side of pond.. kh replied: >> No Frito-Lays? Can that be? >> [quoted text clipped - 25 lines] > >Heather Ah! so they don't have to grow the curry inside the potato....Phew, I can sleep now. The best chips are made by the Belgians. That's why the French call Belgians 'les pommes frites". But no 'Yucks and 'gross' to kh's prized Frito-Lays, if you don't mind Heather. Agreed they might sound a bit that way, but the part they play in keeping the ng's standard bearer flying the flag high. brooks no cissy turning up of noses! Best of best wishes to all especially Frito-Lay eaters. MikeHi kh, I think you have a chance to beat this thing back down again. But whatever happens, and whether or not you are physically frail, you have the consolation of knowing that you have great strength as a human being. You are strong and alive where it really counts. You're a real inspiration to us. Best of luck. Thanks kh for the heads up on your early warning signs that were missed. I've been battling stomach acidity for 2 years. I also found Zantac inadequate - then went to Nexiun 20, later to Nexium 40 and now I am on 2 Prevacid a day - the Nexium 40 worked well but my doctor felt that the Prevacid was better for me - both did the job. I still need 1,500 mg calcium supplementation and I am taking 5,000 IU vitamin D3. Wish you success in whacking out the cancer bugs. Lud ~~~~ .... > The one negative is that even on a Zantac-150 twice a day, chased with > a baking soda drink, and slamming down the Gaviscon, I have heartburn [quoted text clipped - 4 lines] > will continue to improve over the next month. Full strength won't > return for 2 months, so no full contact sports. ..... > Thinking back, the bone mets gave about 3 months warning. My back > felt stiff and there was vague back pain but not immediately in the [quoted text clipped - 11 lines] > > -kh The adventure continues. >After the Planning Session using their GE Lightscan, Monday AM and >clearance to proceed from JHU, I started the first of 14 palliative [quoted text clipped - 3 lines] >weekend. / snip snip... >It hurts like hell to bend or move. It's not bad if I don't move./ big snip Hi kh Replying also to your post for me in the 'Nestin' thread. As I read through the posts over time I am struck by two aspects of this group. One is that I see upbeat help and support coming from familiar names; and it is only over time that, squeezed out of their posts piece by piece, I am able to realise the extent of their own suffering which so well qualifies them to come forward with their advice. The other aspect is no matter what their experiences, their mood music is always onwards and upwards! You're in that pretty unique band, kh. You are as you know, my old mate, a food nut. The pros can stuff you with ADT this and that, about seven and counting, any kind of radiation they thought up yesterday and will try tomorrow, bottles of this and a canister or two of that. Your reaction? "I've tipped my diet toward softer foods, oatmeal, milk, bananas, mac and cheese, chicken noodle soup..." I was surprised kh you also listed a stool softener with each meal; well what a softie you are! : Oh, you nearly forgot, a PCa tumor choking off the bloodflow from your heart to your lungs close to killing you, and oh good, some exotic, radiation (that I've never heard of) with crippling side effects - but going very well now, apart from, "Inova says that my bones are at risk to breakage and to go easy ". So what? Breaking bones won't stop you getting to the fridge for (if I may quote your earlier recipes) blueberry, pomegranate and grape juice, with a side glass of green tea with 'a couple of slivers of fresh ginger'. And shaken not stirred please, with any of that tarragon or tumeric stuff. kh, no mere Pca troglodytes are gonna get you. You'll still be there, having a good stuff of, "...berry pie, made with blueberries, raspberries, strawberries, etc. with vanilla ice cream.." the day your doc strides in with the magic, and blasts the beast into oblivion. Towards that day I'm gonna buy a hat so's I can take if off to you. MikeHi "Exponential lightspeed". Def: The discovery of the cure for Pca at a speed which defies Einstein. On Mar 7, 6:34 pm, Mik...@anon.co.uk wrote: > ... > Hi kh > ... > Towards that day I'm gonna buy a hat so's I can take if off to you. > ... Me too. I have some hats already and I'm going to put each one on today and take it off to you. > MikeHi And to you Mike. That was a great posting. Alan On Mar 7, 1:34 pm, Mik...@anon.co.uk wrote: > As I read through the posts over time I am struck by two aspects of > this group. One is that I see upbeat help and support coming from [quoted text clipped - 3 lines] > advice. The other aspect is no matter what their experiences, their > mood music is always onwards and upwards! Mike, WE are all going to make it. I've had two close calls, but with several months warning. Each time it started with discomfort when my PSA rose above 10 and over a couple months turned into a medical crisis. Once they saw the face of the beast, the docs beat the thing back. I figure, I know what to do. Keep monitoring my PSA and notice if anything feels "wrong" or "bad". I'll keep dreaming Bob C.'s dream for the silver bullet cure. It's not far-fetched. If it's not PROVENGE, it might be GVAX, if not that, then the radioactive Gold Nanoparticles might do it. Maybe GVAX will work in 1 case in 5, maybe that 1 would be me. Something will come along. We just gotta hang on. While we're waiting, I'm having a grand old time. A few years ago, I was in a dead-end job working for corporate idiots. I managed to find a better job and even though it's shaky (the company has major cash flow issues but who doesn't have revenue problems these days) the work is a real challenge and draws on my academics, experience, and my hobbies. I love it. My bosses are piling on the work. There's nothing like good, challenging work to take your mind off personal medical issues. This job could end at any time, like I said, what company isn't in trouble, but for now, the work is good and my bosses appreciate what I've been able to do. I'm also helping friends set up their home networks. This is fun too. Kinda like a barn-raising, work a little, have some laughs, make it a party. -kh "I'm in it for the long haul." > ... > I'll keep dreaming Bob C.'s dream for the silver bullet cure. > It's not far-fetched. If it's not PROVENGE, it might be GVAX, > if not that, then the radioactive Gold Nanoparticles might do > it. Maybe GVAX will work in 1 case in 5, maybe that 1 would > be me. As a completely incurable optimist, I'd be tempted in your shoes to eat handfuls of pomegranate extract pills and, now with today's news of how our mouse cousins are doing, gobs of genistein. Tofu has always been a favorite of mine anyway. > Something will come along. We just gotta hang on. While > we're waiting, I'm having a grand old time. Possibly not the least of the things you're doing is making postings to this group. We're all learning a lot from them. Thanks. Alan > After the Planning Session using their GE Lightscan, Monday AM and > clearance to proceed from JHU, I started the first of 14 palliative [quoted text clipped - 57 lines] > > -KH I am wondering why you are on Zometa infusions instead of Fosamax - the recent studies by Saad indicate that it is beneficial against bone mets. Vitamin D3 at 2000 IU helps get the calcium to the bones. Why were you not put on Taxotere when the bone mets started? Your doctors do not seem to be very proactive - is that your choice? Lud kh wrote: >> I've tipped my diet toward softer foods, oatmeal, milk, bananas, mac >> and cheese, chicken noodle soup, I'm taking a stool softener with >> each meal, OTC again. I'd add -- gradually -- a LOT more fiber, both soluble and unsoluble. Mac&cheese would stop up a 10-year-old without significant fiber with it. Metamucil (I mix it with OJ or grapefruit juice), Bran Buds cereal (great toasty flavor), more oatmeal, etc. Any cereal or bread with less than 5 grams of fiber per serving may as well be white bread. Have you added a memory foam topper to your mattress? Consumer Reports rated Walmart's $50 topper tops, over toppers costing many times as much. I bought one, liked it so much I added a second one (they're 1.5" thick). They reduce pressure spots significantly. I.P. > I am wondering why you are on Zometa infusions instead of Fosamax - > the recent studies by Saad indicate that it is beneficial against bone [quoted text clipped - 5 lines] > > Your doctors do not seem to be very proactive - is that your choice? The reason is that we were not certain it was bone mets until the MRI in February. At that time, it was too late to start the taxotere so Inova put me on their Trilogy to whack the cancer. I've been on Fosamax as a precaution for 6 months. Now that we have some breathing room, we'll start the taxotere IL-6 antigen trial, probably next month. -kh Just had an appointment with an arthritis doctor this week and a long discussion on bisphosphonates. Interesting notes from this meeting: 1- larger and less frequent doses are more effective - monthly larger dose is more effective than weekly or daily. Reclast 5 mg once a year infusion is more effective than the others. 2- drug such as Zoledronic acid (Zometa & Reclast) is cleared out of our body in 7 to 10 days - a small amount remains in the bones a long time. 3- he felt that bone markers CTX and BSAP are not good indicators of drugs effectiveness. My endocrinologist disagrees - I believe she is right. 4- Bisphosphonates are effective against bone fractures even though BMD test does not indicate any increase in bone density. You might look into Zometa instead of Fosamax as there are studies by Saad that indicate it works at preventing bone mets. Lud ~~~~~~~ > > I am wondering why you are on Zometa infusions instead of Fosamax - > > the recent studies by Saad indicate that it is beneficial against bone [quoted text clipped - 16 lines] > > -kh
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