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Medical Forum / Diseases and Disorders / Prostate Cancer / July 2008Brief Report from the Lab Rat.
My PSA is back up to 18, it was 12 about five weeks ago. This is on Lupron and after the radiation to my spine. The back pain continues to fade, my appetite and stomach are improving but I'm taking Zantac-150 2X day. The Wizard at JHU switched me to the pure Oxycodone 5 MG, script reads 4-6 hours as needed. I had a minor "issue" at the pharmacy over that. They don't keep it in stock. 4 day delivery. They needed to call the doc. This even though the script paper wasn't from a regular pad. It was fancy, multi-colored with security features like a $100 bill, was imprinted "Valid ONLY for Narcotics", and had all kinds of JHU numbers on it. I had filled scripts for percocet 10/325 there. I realize that there is a slightly greater risk for abuse for pure Oxycodone but come on. I'm what you'd call an "advanced cancer patient with bone pain". Anyway, I'm busting the 5 mg in half, taking a 2.5 in the morning and another in the evening. Here's the news. I spent yesterday at JHU, tubes in both arms. They took blood just about every hour. I spoke with the Wizard briefly and the Wizard's apprentice longer, also chatted it up with the "study manager". All systems go. The taxotere infusion took 1 hour. There were 2 blood draws during the infusion. That's all done through a little reusable tube, zero pain but then the 2.5 Oxcodone tends to buffer little nuisance pains. I wish it could do something about certain idiots out there in the business world. Up in the infusion center, I saw some pretty sick guys. A quarter were in wheel chairs. Many seemed barely able to walk. I'd put the average age at 70-75. At the end of the taxotere infusion I had a buzz or tickle in my throat. This is one of the side effects. When I mentioned it, they made me stay another 15 minutes until it cleared. Their fear is anaphylactic shock. No-no, I'm fine, it's just a tickle. Sit-stay! The Wizard said the 80% of patients have a "good" response to taxotere, most go off after a half dozen to a dozen infusions because of "side effects". I think the record is about 17 infusions. A "good" response is a PSA drop of 50% or better. This doesn't sound great but I'll be a lab rat for taxotere plus the IL-6 antigen. I might do better. I spent the next 6 hours waiting around for my 1 hour blood draws. The JHU blood techs are cool, hard working, smart. Next time, I'll take a laptop with me, I might subject you all to a co- contemporaneous, stream of consciousness, rambling. Leaving Ball-More, I saw Diesel for $4.59.9 gallon, Regular was running $3.55.9, what a bargain in comparison! I had dinner at a pal's restaurant, Kaufman's Tavern about a half hour south of Ball-More, a known good food, heavy serving place. Ordered a 14 ounce T-bone steak, ate half the steak, two servings of green salad, a small loaf of appetizer bread, baked potato, half the green beans, will finish the rest tonight. I'd say my appetite is improving. The steak was grilled, not fried. Oh my, was it good. It'll be great tonight too. -kh Doing better all around. >-kh Doing better all around. Good to hear - looking forward to the stream of consciousness... Best of luck with all of this kh. It is my understanding that responses to taxotere are variable. Some people don't get too much benefit from it, but there are others who really win the lottery. In your next session, you might ask what the docs know about revlimid. A friend of mine is on it and seems to have had a good response. He's also hormone refractory. Alan >My PSA is back up to 18, it was 12 about five weeks ago. This is on >Lupron and after the radiation to my spine. [quoted text clipped - 68 lines] > >-kh Doing better all around. Hi kh Your first lot of stuf was a bit boring; you know, the back pain and narcotics you're on now, tubes in your arms all day, however I kept reading on to find your latest dietary advice. Imagine, then, the great disappointment, indeed distress, you caused me - and I'm sure all the posters and lurkers here - when I had to read right to the end - and then found that there was no mention of the lashings of sauce and juices with which you normally sluice down your epic and mouth-watering meals. And Haagen-Daaz ice-cream - how many tubs? Not a word. How can I write a best seller by stealing your menus and publishing them as a proven diet for long-lived Pca survival against all the odds, if you suddenly become such a mealy-mouthed reporter? Besides, how am I to know what to have for supper tonight? For shame, Sir. I hesitate to give you some good news kh, but petrol here in Uk is now the equivalent of $10 a gallon - so we rely more than ever on your menus as we can't afford to drive to Fred's caff up the road, let alone your magnificent sounding Kaufman's Tavern, half an hour south of Ball-More. At a bargain rate of $3.55 (.9) I'd go just for the exotic names. It's as well kh that I know you're the most loved and wished for guy on this NG, so I'll very reluctantly have to forgive you on this one occasion. Otherwise, my very kindest wishes - and I hope it really was "great tonight". Your devoted chronicler and sometimes pilferer. MikeHi On Apr 23, 1:24 pm, Mik...@anon.co.uk wrote: > I hesitate to give you some good news kh, but petrol here in Uk is now > the equivalent of $10 a gallon - so we rely more than ever on your > menus as we can't afford to drive to Fred's caff up the road, let > alone your magnificent sounding Kaufman's Tavern, half an hour south > of Ball-More. At a bargain rate of $3.55 (.9) I'd go just for the > exotic names. Here's the menu <http://www.kaufmannsrestaurant.com/menu.html> I had the 14 ounce T-Bone steak but on Tuesday, it's on special $19.95. It's about halfway between Ball-More (as locals say Baltimore) and Northern Virginia, it's a good place to grab an early meal on the way back from JHU. Decent food at a fair price. I didn't write more about food because my lunch was at the hospital's dining hall. It was OK. I'm at 36 hours post taxotere infusion now and so far, so good. I'm a little jittery but that could be the steroids. I was tired this afternoon but again, it might be the steroids. According to JHU, the side effects frequently worsen as the treatment progresses. I'm just starting this. We'll know more as the months pass. Guys, I've had a tumor in my chest try to choke off my vena cava and windpipe. The Lupron then Lupron w/ Casodex, hammered the PCa down. It went hormone refractory and tried for my spine. Inova gave the PCa 14 blasts from their Trilogy. It's going to take a lot of side effects to make me give in to this S.O.B. The other thing that's occurred to me is that we're men. I got this from reading about I.P.'s gym and sports reports. What are a few hot flashes, muscle aches, fatigue, whatever, compared to what we do for fun? I'm walking around and working. In fact, I was showing the phlebotomists how I could Moon Walk. You get a little funny on 24 mg of decadron, chased with Oxycodone. Moon walk? More than a little funny. -kh what next? Break dancing? Snip, snip, and ... snip Bottom line: > -kh Doing better all around. THAT pony makes the digging worthwhile. I.P. I'm jumping the gun on this report, it is not quite 7 days since the chemo infusion. I'm on pregnisone 5mg 2X day, this is a milder steriod than the decadron. This is supposed to fight the side effects of the taxotere. It has its own side effects and I still feel the bone mets, the radiation, so I'm a blur of aches and pains and stomach upset. Welcome to old age!!! I'm working full days, my head is clear, and I have enough stamina to walk a mile, climb a couple flights of stairs, and generally look and feel normal. I tire easily. A brisk walk followed by a couple flights of stairs leaves me exhausted for a few minutes. I'm back to 9 or 10 hours of sleep a day. My weight is down. I'm seeing 174 lbs down from 197 a few years ago. Emotionally? -shrug-, life and business are progressing just fine. Better than OK. I got a payment from an old client; this was for some work I did last year. I might add an assortment of decent wines to my wine cellar. I know almost nothing about wine but occasionally have guests who enjoy finer beverages; it's always been a mild embarrassment that I don't stock anything interesting for them. I'm more the Gallo Hardy Burgundy, Two Buck Chuck type. Ya know, splash cheap wine onto the grilling meat, take a sip, splash, sip, when you feel good, the meat is ready. I'm on the every 3 week taxotere infusion. This is a heavier dose than the every week treatment. At one week, I'm able to walk, cook, work, think about buying treats like wine; this suggests that I'm tolerating the chemo. So far, that is. The other metric is how my blood chemistries are responding. They do a draw every week but I don't expect problems there for months. My red count is low normal, as expected from the radiation. It was plenty good enough to get into the trial. As the chemo exerts itself, as the radiation fades, I'll let you know how it goes. The bottom line is that this is the best I've felt in months. -kh I'm a lab rat for a Taxotere boosted by an IL-6 antigen trial. I'm late with the 2 week report but it's been a week. The radiation 2 months ago still hasn't quite faded so I'm a mess of mild symptoms, side effects, and I'm looking for signs of the PCa. This week, week 2, my critical white blood count, the ANC, fell to 330, This is below acceptable for the trial. They want it to be 1000 or higher. They'll pull blood on Monday, the 12th and make a go/no go decision. My counts are low because the radiation to my spine also hit my hip bones. These are major repositories of bone marrow and produce much of the blood cells. As the radiation fades, they expect my counts to bounce up. While I feel fine, they cautioned me to avoid crowds, handwash, and gave me 7 days of CIPRO, 2X a day. If that affects my GI tract, how would I know? My stomach has not recovered from the radiation 100%. I'm taking Pregnisone 5mg, 2X a day. A milder steriod than Decadron, it still leaves me a little jittery which I've used to really get the work out. It can cause sleep disorders, which have not been a problem this week. JHU says that Pregnisone is part of the treatment and has been shown to reduce PSA when used this way. I'd call the side effects a wash, I am noticeably stronger this week, head clearer, and on a performance rush. Big change this week, the Taxotere made my hair get real thin. All of a sudden, clumps fell out. I got a short, marine-style hair cut and my quantity of hair looks about the same. If more hair falls out, I'll have it cut even shorter. Gals have remarked, "sexy!" and "looking tough". If only my T wasn't <20..... Hopefully, I'll be able to get the next infusion. I'll let you guys know how that goes. -kh > Big change this week, the Taxotere made my hair get real thin. All of > a sudden, clumps fell out. > > I got a short, marine-style hair cut and my quantity of hair looks > about the same. If more hair falls out, I'll have it cut even > shorter. I got that covered. I started cutting mine really short after I was diagnosed.  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'm a lab rat for a Taxotere boosted by an IL-6 antigen trial. I'm > late with the 2 week report but it's been a week. KH, again, it is great getting your blow by blow battle updates. Thanks. The more input I see from guys like you, the easier it seems to be to fight my own battles and come to terms with all of it. I hope your educational ramblings continue for a long long time. And that we are all here to read them!!! I have not cut my hair short yet, like Steve, and I am just happy to have someplace where it still grows!!! The combo of Lupron and Casodex sure take their toll on body hair!!! If one of the next battle plans in my future results in the head hair going too, I wonder if the beard will fall out too?? The last time I shaved my beard off I came very close to being dog bit by my own dog when I came out of the bathroom clean shaven. If I had not been able to speak up quickly, it would not have been pretty. Thanks again. Keep a fighting, the battle lines have been drawn and we can still win some battles here and there, no winner has been announced yet. If we can win enough battles, maybe we can hang around long enough to win the war too. > I have not cut my hair short yet, like Steve, and I am just happy to have > someplace where it still grows!!! The combo of Lupron and Casodex sure > take their toll on body hair!!! If one of the next battle plans in my > future results in the head hair going too, I wonder if the beard will fall > out too?? My biggest fear! I have had a mustache, except for one week, since I was 17½ years old. I'd really hate to lose it. But, alas, the hair has fallen from my chest, arms, pits, and legs and I suspect I'll lose it from my head, brows, and crotch before it's all over. On May 13, 6:59 pm, "Steve Kramer" > My biggest fear! I have had a mustache, except for one week, since I was > 17½ years old. I'd really hate to lose it. > > But, alas, the hair has fallen from my chest, arms, pits, and legs and I > suspect I'll lose it from my head, brows, and crotch before it's all over. Steve, I have the same problem except for mustache and head - I am on Avodart and the seems to be the key to keeping hair on the top (I tried stopping and started losing hair). Taxotere took all my hair off, - after stopping, hair grew back even denser especially on top. My major problem is crotch hair - ringworm then ADT and radiation took it all away - chafes like hell - have to use baby powder every morning. Are you on Avodart? Lud Are you on Avodart? Nope. Just Casodex and Lupron right now. I'm fretting over possibilities a year or two down the road (I hope). > Are you on Avodart? > > Nope. Just Casodex and Lupron right now. I'm fretting over possibilities a > year or two down the road (I hope). What fretting? HRPC gets more difficult. Lud > I hope > your educational ramblings continue for a long long time. And that we > are all here to read them!!! I expect everyone will be here for a long time. Today... I walked in to JHU cranked on decadron. They want you to take 24 mg before the Taxotere infusion. 24 mg is a big bang, it's a RAVE bang. I believe the theory is that the decadron protects you from the side effects of the infusion, which can include anaphylactic shock. The infusion techs ask about itchiness, respiratory changes. I also snuck in 2.5 mg of oxycodone, just to buffer the pain. So yeah, I was ready for a RAVE. I had some coffee and a peanut butter sandwich (my budget is still tight) and headed over to JHU. My 330 ANC blood count had risen to over 4,000. I was cleared for the taxotere and IL-6 Antigen. The study nurse explained that one reason that the infusions are on a 3 week cycle is that most guy's ANC bounces back in the 3rd week. They know that from past trials (where brave men took it on 1 week, 2 week, 3 week, 4 week cycle to determine the "right" spacing for those of us who come follow.) Thank those lab rats. They did the heavy lifting for us. I have it easy. Let me tell you about today's ordeal. They pulled blood at 7:45 and I went up to the Infusion center to wait around for my meds. I got in about 10:00. Then it was 3 hours on an infusion bed. I had cable TV with CNN and 4 movie channels. They brought around drinks, cookies, other snacks. I had a banana, a fruit bar, and graham crackers. They took orders for lunch, $7.50 for a roast beef sub, crisps, and a Coke. I finished watching Spiderman 3, the last of my roast beef, and it was time for the last blood pull. The infusion was done. I then had 4 hours to kill until the last infusion. I went down to my car, changed the wiper blades, air filter, and checked the oil. The level is OK but I'll get it changed this Friday, also the fuel pump. I stood around outside for while, tried to get some sun on my head which has pale skin on the side where the hair was thick and fell out. The top, which always had thin hair, is tan. I want a more even look. I brought a book with me, the author is dealing with his Mom's cancer. He said that the prednisone helps keep appetites up so there is less of the chemo-walking skeleton look. He also said, get out and walk as much as possible. I had my laptop with me so I wrote this report, no WiFi I can get to there so I'm uploading the text from home. So far, this has been easy, minimal "new" side effects. The good news, my PSA had risen to 18 a month ago; one infusion of the taxotere drove it down to 11. Let's see that taxotere and the IL-6 antigen can do. Oh, and I found out I have an invite to go crabbing on that Restaurant owner's boat. Really get my tan evened out. -kh "Take that!" >Today... I walked in to JHU cranked on decadron. They want you to >take 24 mg before the Taxotere infusion. 24 mg is a big bang, it's a [quoted text clipped - 8 lines] >I went up to the Infusion center to wait around for my meds. I got in >about 10:00. Then it was 3 hours on an infusion bed. Hi kh According to Mayo and Webmd definitions my lymph node involvement means that I'm now T4. I've had three easy years with HIFU painlessly (mostly) and S/E's negligibly knocking out the primary sources but soon have to decide on the tough stuff for metastases. So tell me kh. What can I take that you took, that will end me up with treatment as follows: > I had cable TV with CNN and 4 movie channels. > >They brought around drinks, cookies, other snacks. I had a banana, a >fruit bar, and graham crackers. They took orders for lunch, $7.50 >for a roast beef sub, crisps, and a Coke. Blimey that's only about three quid English and I believe USA doesn't serve beef unless it covers the plate...anyway...going on.... >I finished watching Spiderman 3, the last of my roast beef, and it was >time for the last blood pull. The infusion was done. You were so souped up by the menu -not to speak of earlier coffee and a succulent peanut butter sandwich - (Thanks. I'd forgotten about those. Used to love 'em) >I then had 4 hours to kill until the last infusion. And feeling absolutely great ... so.... >I went down to my car, changed the wiper blades, air filter, and checked the oil. The >level is OK but I'll get it changed this Friday, also the fuel pump. >I stood around outside for while, tried to get some sun on my head >which has pale skin on the side where the hair was thick and fell >out. The top, which always had thin hair, is tan. I want a more >even look. H'm kh, the anti-testosterone stuff doesn't seem to have workd on you....(good luck with the even tan) ......You were then bored with nothing to do, but.... >I had my laptop with me so I wrote this report, no WiFi I can get to >there so I'm uploading the text from home. [quoted text clipped - 4 lines] >taxotere drove it down to 11. Let's see that taxotere and the IL-6 >antigen can do. It will,absolutely no doubt, with the kh electric energies and menus pushing it hard.. >Oh, and I found out I have an invite to go crabbing on that Restaurant >owner's boat. > >Really get my tan evened out. -YES! I want that as part of my treatment too! What do i have to do?? (Advice might be urgently needed, so don't lie down on the job now I've just learned of a rather cataclysmic leap in my PSA which might calll for crash measures - which I won't accept without your menus, yacht cruises and suntans...) >-kh "Take that!" I will kh, I will! Kindest regards and keep kicking the bastard hard, especially when it's down, I don't reckon it's got a chance! MikeHi > So far, this has been easy, minimal "new" side effects. > > The good news, my PSA had risen to 18 a month ago; one infusion of the > taxotere drove it down to 11. Let's see that taxotere and the IL-6 > antigen can do. > Really get my tan evened out. > > -kh "Take that!" Great news kh - taxotere is doing it's job - and with minimal side effects - Wishing you to breeze through to zero PSA. Lud > - taxotere is doing it's job - and with minimal side effects - > Wishing you to breeze through to zero PSA. Thanks. The radiation's side effects are fading into the past. My back is much better and except for one 2.5 dose of oxycodone, I've been off pain-killers for 5 days. Three months ago, I was hitting the percocet hard and could barely get out of bed. Now I can walk briskly, bend over, each week, I've gotten stronger. No way to tell how long I can stay on Taxotere plus the IL-6 antigen. Supposedly the side effects will intensify. So far, I noticed an itchy throat once; it cleared up in a few minutes. At night, my legs feel jittery. Don't know if that's the Taxotere or the Prednisone. Either way, I simply notice it and go back to sleep. I have a little heartburn, Taxotere might be the cause but I had serious heartburn from the radiation. I'm eating ice cream because, it feels cool going down. The Zantac-150 seems to handle whatever the cause. I'm hanging in there. Did some good work today. If anyone here goes to JHU for cancer treatment and has "study" blood drawn, I took in some tools and fixed their four blood-draw chairs. -kh Patient and roving handi-man. > > - taxotere is doing it's job - and with minimal side effects - > > Wishing you to breeze through to zero PSA. [quoted text clipped - 27 lines] > > -kh Patient and roving handi-man. Sounds like you are doing amazing - I could go more than 3 cycles with only taxotere. Prednisone can cause jitteries, insomnia and fluid retention - notice swelling in the ankles at the end of the day. Sour stomach seems a common occurrence with all the drugs - next step up is Prevacid and Nexium - also need to keep up vitamin D and calcium intake. Pill schedules are a pain in the butt. What else is there to complain about! Lud At 5 weeks, ANC dropped to 100. From memory it's been: wk - ANC - comments 0 - ??? - Infusion taxotere, PSA 18 1 - 900 - 2 - 330 - hair falling out, got a buzz cut. 3 - 4000 - Infusion taxotere and CNTO (328), PSA 11 4 - 600 - tired all the time, sour stomach. 5 - 100 - tiredness fading - can stroll for an hour, back on Cipro I'm hoping the ANC will jump back up by next week. It takes 1,000 or better to get an infusion. I feel really, really "up", almost pumped. That might be the prednisone talking. My appetite is coming back but JHU has directed no salads, no fresh fruits, or raw vegetables with that low an ANC. Hospital style handwashing, alcohol sanitizers. I can't hit the fresh fruit but I can chug the green tea, blueberry, pomegranate cocktail. I've added orange juice to it. Bring it to a rolling boil, cool, enjoy. My back feels a lot better but there's still something going on. Now 2 1/2 months post radiation. The JHU doc said I'm getting close to being able to "exercise". He wanted me to cool it until my bones strengthened post bone-mets, post- radiation. He says, he'll tell me when. Soon, but not yet. -kh > At 5 weeks, ANC dropped to 100. From memory it's been: > > wk - ANC - comments New term.... What's ANC? >> At 5 weeks, ANC dropped to 100. From memory it's been: >> >> wk - ANC - comments > > New term.... What's ANC? Disregard. Wikipedia explained to me about ANC, PMNs, and WBCs. > At 5 weeks, ANC dropped to 100. From memory it's been: > [quoted text clipped - 29 lines] > > -kh Kh From my experiences - white blood cells really drop at 7 to 10 days post infusion and should bounce back up after another 7 to 10 days. Mine were so bad after the first infusion I was hospitalized for 6 days on ABX- IV. For the next cycle, I asked for Neulasta which kept my white cells up - expensive but a lot better than staying in hospital. Next to go down were the hemoglobin - so on the 3rd cycle, they added Aranesp to get the red blood cells up. Diet that helped me was getting high protein and keeping carbs low (mostly vegetable). Hope this helps. Lud >> At 5 weeks, ANC dropped to 100. From memory it's been: >> [quoted text clipped - 12 lines] >> I feel really, really "up", almost pumped. That might be the >> prednisone talking.? /Big snip Hi kh No, it's you talking. Always "up", always pumped - whatever they pump into you. I saw my consultant yesterday who said at this stage ít's about attitude as much as anything else. I thought of you, and know he's right. My very best wishes MikeHi "Exponential lightspeed". Def: The discovery of the cure for Pca at a speed which defies Einstein. > From my experiences - > > white blood cells really drop at 7 to 10 days post infusion and should > bounce back up after another 7 to 10 days. ... > Hope this helps. Absolutely! I did a 4 point graph using the data that I have (I wish I had more data points). The graph shows that my ANC nadirs on the 12th day. It does suggest that the protocol is wrong. They pull blood on the 0th, 7th, 14th, and 21st, notice that on the 14th, that my ANC is low and tell me, "start taking the Cipro". By the 14th, I think my ANC is trending back up. If so, I should start the Cipro on the 10th or 11th day after infusion, this is from my 4 point graph. Keep taking it until about the 14th or 15th. By then, the graph "suggests" that my ANC is trending up past 1,000. Of course, I could be completely wrong. -kh I go for the pre-treatment bloodwork today. If my ANC is high enough, tomorrow (Tuesday) will be the 3rd infusion of Taxotere, counting the "run in". It'll be the second "trial dose", which is Taxotere and the CNTO(328) trial dose. So far, so good. My weight is holding between 175 and 180. Some days I'm eating everything in sight, some days I don't feel like eating much. The grocery store had pork chops on sale, $1.79/pound. I fried them in garlic butter. Had them with a side of fresh asparagus and dill. Side effects to date? I slap side effects with the back of my hand. Don't misunderstand, I've felt them all but so far, these have been tolerable. Hair loss - It's been falling out. I cut my hair really short and look like fashionable, 10 years younger almost military. My balls and armpits are getting smoo-ooth but you probably didn't need to hear that before breakfast. Nervous legs - A known side effect. I take the twice daily steroid early so by 10 PM, the worst of it is over. If it happens during the day, I just walk around for a while. Stomach issues - I'm 3 months post Radiation for spine and hip mets. The gastro-intestinal colon churning and blasting is not as bad as it was 3 months ago. Even then, it was about like the day after a beer and chili festival combined with some stomach flu. Tolerable then. Not too bad now. I'm still taking the Zantac-150. Fingernail issues - One thumbnail is very slightly dark at the quick. Some guys have their nails turn black, some lose them. Tear-duct issues - Another known side effect. Maybe. No complaints. You know about my ANC dropping to 330 and 100. Various sleep issues, feeling tired, head fog, muscle weakness. Those just say, push back harder. I think about I.P. and his athletics. Push back. Take a machete out to the yard and have at some weeds. Push back. -kh > Taxotere and the CNTO(328) trial dose. > > So far, so good. My weight is holding between 175 and 180. Some > days I'm eating everything in sight, some days I don't feel like > eating much. > Hair loss - It's been falling out. > > Nervous legs - A known side effect. I take the twice daily steroid > early so by 10 PM, the worst of it is over. > The gastro-intestinal colon churning and blasting is not as bad as it > was 3 months ago. > Fingernail issues - One thumbnail is very slightly dark at the quick. > [quoted text clipped - 4 lines] > Various sleep issues, feeling tired, head fog, muscle weakness. > Those just say, push back harder. Only on a forum like this would you see this response.... This is GREAT reading!!! I cannot tell you how much I appreciate your prose and preparation for what I can, no doubt, expect in the next coupld of years. Thanks!! 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 Update, Just got the email from JHU. It's about what my spreadsheet projections showed. I'll take the graph in, might be something that they can use with other patients. >>> 06/02/08 5:43 PM >>> I got the blood pulled at 3:30. Let me know if my ANC is adequate. I expect it is. See you Tues AM. >>> 06/02/08 9:00 PM >>> I don't know how it is possible, but yes, it is more than adequate. It was over 2000. On Jun 2, 10:58 pm, nancyhoyt.k...@gmail.com wrote: > Update, Just got the email from JHU. It's about what my spreadsheet > projections showed. I'll take the graph in, might be something that [quoted text clipped - 11 lines] > I don't know how it is possible, but yes, it is more than adequate. It > was over 2000. it's me, KH w/ a borrowed account. Back on my account. I'm at Johns Hopkins out patient cancer center. I have my laptop with me. I thought I'd take some notes and enjoy my "vacation day". When I fired my laptop up, it said, "Connecting to JHGuestnet", whoo- hoo, here I am, IV's in my arms and surfing the web. The signal is not very strong but it's running fast and I've already sent email to my boss and some co-workers. I haven't gotten the 3 week PSA yet but my "over 2000" ANC came in at 2400. I could mud wrestle in a hog pen and fight off infections with an ANC like that. That's a whole lot better than the 100 a week ago. I'm also juiced heavy on the Decadron, that's on top of the Prednisone. My BP and pulse are up slightly but not dangerously so. My stomach and back feel almost normal but that might be the steroids talking. Here's the summary. This is my 3rd infusion of Taxotere and the 2nd which included the trial drug, CNTO (328) which has something to do with mice. The Taxotere alone dropped my PSA. I've had many side effects but so far these have been tolerable. The docs say that some side effects, the fatigue, will get worse. I hope not. I don't have much in the way of physical reserves. I'm sleeping 10 hours a day and tired most afternoons. However, this is a lot better than I was doing 18 months ago when the prostate cancer tumor near my lungs was choking the life out of me. I am not going back to that. Even though I have little stamina, I push myself to walk a little further each day. I also do the best I can to stand up straight and walk briskly, push past the pain and move ahead. I refuse to be old, sick, and weak. I refuse to be broke too. That's why I'm still working, learning, doing what I can to advance my career and business. When people notice my hair, I tell them that it's my summer cut or if I'm in a joking mood, I tell them I'm joining the skin-heads. They always laugh I had 5 hours sleep last night, decadron will do that. I expect I'll get a little more fitful sleep tonight, maybe dream about blonds having their way with me, then blaze through a full day of work tomorrow, crash Wednesday night. -kh You ready? 5.6 Just before the Taxotere - 18 3 weeks pass, just before the Taxotere and CNTO(328) - 11 Another 3 weeks, just before the 2nd Taxotere and CNTO(328) - 5.6 Recall that I have an "aggressive" PCa. Sometimes, these"respond well" to chemo. posted to a.s.c.p while waiting for the final blood draw. -kh FANTASTIC!! You are truly an inspiration to all, due to the amazing way you are handling all of this. Keep on truckin', "kh".....and I will keep saying a few words for you!! XX Heather > You ready? > [quoted text clipped - 10 lines] > > -kh >FANTASTIC!! > >You are truly an inspiration to all, due to the amazing way you are >handling all of this. Keep on truckin', "kh".....and I will keep saying >a few words for you!! Amen to that. I see your smile and thumbs up as you emerge through the smoke of battle. March on. MikeHi On Jun 5, 6:01 pm, Mik...@anon.com wrote: > >FANTASTIC!! > [quoted text clipped - 6 lines] > > MikeHi And again, Amen! We're all thinking of you and we appreciate all the info. Alan Alan M, Mik...@anon.com ,Heather" , Lud, all.... I've been off-line for a few days, dealing with side effects, mostly fatigue, some head-fog, heartburn, joint pain in my middle toe. Through that, I've been able to work, drive, cook, and generally function. The heavy dose of steriods before the infusion kept me up Monday, Tuesday, and somewhat, Wednesday of last week. I was getting 5 hours of sleep. By Thursday, I was able to sleep 8 hours. Friday, Saturday, a couple days of sleeping 10 hours at night and taking a nap on Saturday. I was coming out of it by Sunday. This was the 3rd infusion of Taxotere and the 2nd of CNTO(328). Thursday and Friday were rough. I don't know if it's the chemo- infusion or coming off the steroids. If you're looking at Taxotere in the future, start now to strengthen yourself. Walk, jog if you can. Build yourself up. Go for strength training. The Decadron causes muscle wasting. I.P. has touched on this, make yourself a comfortable, cool, quiet place to sleep, especially during the day. Get a better mattress. A couple hour nap on Saturday helps a lot. Get in the best shape possible, your blood chemistries squared away, cardiovascular, everything tuned and ready. Even if you can only manage a 5 minute walk every other day, alternate with light weight training. Each week, add a few minutes and a small amount of weight. Don't beat yourself up if your progress is slow. We ain't kids. Start before the chemo because it will whack you down. -kh hate this Lupron belly and skinny legs. > -kh hate this Lupron belly and skinny legs. I hear ya!! I've always been heavy, but could easily lift my weight. This belly thing is new to me and, besides being unattractive, it just plain gets in the way. > SNIP.. >Even if you can only manage a 5 minute walk every other day, alternate >with light weight training. Each week, add a few minutes and a small >amount of weight. Don't beat yourself up if your progress is >slow. We ain't kids. >Start before the chemo because it will whack you down. We ain't kids here-I live in residential accommodation designed for older people - found it few years ago mainly for my wife and thought things might go downhill for me - it's got chords and other reassuring things to pull - and the paramdedics can get here blindfold because of all our ages! But it also has a secret weapon in our fight of which kh would approve - stairs! Bet you young guys never heard of them. In fact - The 39 Steps! Three flights of stairs, 13 steps each. On days when 80 yr old G9 body starts whining and moaning, but it's not up to weights - there's always the challenge just outside the door- 52 steps at a time today? Two or three times over at least? Before you young guys on marathon runs and weights start poo-poohing , hark to the advice at: http://www.webmd.com/content/Article/67/80093.htm "Stair-climbing is intense and vigorous exercise.......but it's hard, and you need to pace yourself." Hard....see? Incidentally you can read useful stuff about all sorts of exercising at that URL, so's none of us lets kh down. Best wishes to all MikeHi On Jun 10, 7:15 am, Mik...@anon.com wrote: > In fact - The 39 Steps! Three flights of stairs, 13 steps each. On > days when 80 yr old G9 body starts whining and moaning, but it's not > up to weights - there's always the challenge just outside the door- 52 > steps at a time today? I'm doing stairs too but it's HARD! My house is 3 levels, 14 steps for each of the 2 flights. 28 steps from basement laundry to bedroom. I climb stairs at work too. My "daily test" is the 14 steps times 6 flights at the office. 2 years ago, I could do this easily. Today, I barely make it. I'm not seeing any progress but I keep doing it every day. The chemo is taking me down, stealing strength and stamina. If I can maintain the same level of exertion, I'm doing good. Guys, like Steve says, never give up. Never, ever, give up. I think of myself as getting ready for the Olympics or in Marines basic training. Instead of running 26 miles or marching 10 miles carrying gear, I'm walking for 5 or 10 minutes or climbing a few flights of stairs. By my thinking, it's just as much a challenge. When I go to Johns Hopkins and see other patients, some in wheelchairs, some using walkers, I know I have to keep moving. The other week, the waiting area was crowded, no chairs. I stood and paced the floor. With a PSA of 5.6 now, I have hope of driving this thing into remission, holding on until a new treatment comes down the pike. That doesn't do me any good if I neglect the rest of my bod. So, yeah MikeHi, stairs, walking, lots of rest at night, quality, balanced meals. Steak, asparagus and butter, crab cakes. Keep plugging at it. -kh hand weights too. Never, ever give up. ... > Fingernail issues - One thumbnail is very slightly dark at the quick. > Some guys have their nails turn black, some lose them. > > Tear-duct issues - Another known side effect. Maybe. No complaints. > ... > Various sleep issues, feeling tired, head fog, muscle weakness. .... > -kh Some suggestions: finger nail problems - keep finger in iced water - my cancer centre provided cold gel mitts sleep problems - melatonin helps most times - I have been using it for 9 years and now use 20 mg. peripheral neuropathy of the soles of the feet is possible - use iced water bath for foot bottoms - I didn't do it and still have numbness in my soles. Tear duct issue - eyes produce much more tears than tear ducts can take away - solution is frequent rising with warm water and eye drops to prevent tear duct drains from clogging. You are doing great Kh. Lud > sleep problems - melatonin helps most times - I have been using it for > 9 years and now use 20 mg. Yesterday I drove through the rain to Johns Hopkins for the weekly blood draw. Last week's chemo, steroid dose, lack of sleep, gave me head fog. Since the weekend, I've been sleeping better. The first week of Taxotere is the worse. We had heavy thunderstorms; my car needed a wash. The new Bosch wipers did a fine job. I confidently and with full control, drove 65-70 mph through the rain. The speed limit is 65. Regular gas is over $4.00/gallon and people are slowing down. I could see lightning strikes in the distance. It was a beautiful drive from Baltimore to Washington DC. I've been testing myself, probing the limits of my endurance. I barely make the 84 steps of six flights of 14 steps. At the top, I'm in oxygen debt and gasping for air. JHU reported that my BP was 106/69 with a resting pulse of 90. This is a change. I usually see a resting 125/78 with a pulse of 76, with occasional much higher readings. If I've been walking fast to get there, I expect 140/85, numbers like that. I have never seen my BP this low. -kh >> sleep problems - melatonin helps most times - I have been using it for >> 9 years and now use 20 mg. > > Yesterday I drove through the rain to Johns Hopkins for the weekly > b kh, I just re read all of your posts starting when you began the taxotere. I suspect that my next psa test in a week is not going to have the best of news in which case I know what's next and it's really helpful to learn from someone who has been there. Time will tell. In the meantime, thanks for the week by week rundown, and keep a fighting. Have a good one. ....snip, tho all interesting >I could see lightning strikes in the distance. It was a beautiful >drive from Baltimore to Washington DC. I love your descriptions. By chance, do you read James Lee Burke and his Robicheaux dectective novels? He paints a description of the landcsape and character of Louisiana and the south which together with the depth of his heroes and villains are sheer poetry - at the same time as keeping the story unputdownable. He'd be a soul mate for you in between running up and down the corridors of John Hopkins or servicing your car, while waiting. >I've been testing myself, probing the limits of my endurance. I >barely make the 84 steps of six flights of 14 steps. At the top, I'm >in oxygen debt and gasping for air. I took this as a challenge. I went straight out, gasped at six and managed seven - just to keep targets in mind for you. Unfair of course to you - I've been enormously lucky and got rid of my primary G9's with no toxic effects, due to HIFU. My toxic effects are the unforgiving ones of age. But systemic has sparked. So I'm reading you also for my next steps. >JHU reported that my BP was 106/69 with a resting pulse of 90. > [quoted text clipped - 3 lines] > >I have never seen my BP this low. Let's know what the solution to this is, kh. Meanwhile keep driving, observing, reporting - keep right on to the end of the road... Kind regards Best wishes to all MikeHi On Jun 15, 7:05 am, Mik...@anon.com wrote: > I took this as a challenge. I went straight out, gasped at six and > managed seven - Great!! By the 4th landing, I'm stuggling. 5th has my legs shaking. I barely make the 6th and could not go more. I'm not giving up. Every day, I try the stairs. I'm also walking 5 or 10 minutes every day. Oh, gotta tell you... I got over to a local festival today. You probably have them. 6 bucks to get in. People selling junk, stuff they made, food vendors. Walked in the sun for 2 hours. I'm still trying to tan my head. The top is tan where I was already balding. The sides and back were embarrassingly pale. I got my hair cut really short, doesn't look too bad except for the color mismatch. I walked around and then spotted a food vendor, STEAK and CHEESE SUB- SANDWICHES with ONIONS and PEPPERS, $6.00!!! It was piled high and hot off the grill. So here I am. PCa, Mets, Chemo, hair falling out and eating a steak and cheese sub in the blazing sun like a human vacuum cleaner. Yeah, this is tough duty. -kh On June 15, kh wrote, regarding fun at the festival: > I walked around and then spotted a food vendor, STEAK and CHEESE SUB- > SANDWICHES with ONIONS and PEPPERS, $6.00!!! [quoted text clipped - 5 lines] > > Yeah, this is tough duty. Hee hee. Good on ya! I know folks who would go absolutely bonkers at the very idea of eating dead cow, with or without curdled milk. Well, kids, we already have PCa and there is not a shred of evidence that gobbling leaves & twigs will give us even one day of life in addition to that which is ordained by Fate, God, or Whatever/Whoever is cranking. And please: No lectures. Regards, Steve J "I am under no obligation to respect your beliefs. Respect is earned; it is not an entitlement..." -- Lionel Shriver ......//snip >I'm not giving up. Actually, when I quoted Winston Churchill for his "never, never, never, never give up I didn't get it quite right. What he said was even more relevant. It was 'never give in"... (implying seemingly ovewhelming force - his moment had come in 1940 when almost single-handed he kept GB going when it was alone in the world with its army defeated facing Nazi armies which had conquered the whole of Europe) . All we've got is Pca which is gonna go down too one day. (I believe you'd find the whole speech inspiring kh - it's at: http://tiny.cc/x1zWu >/more snips..... ....... but your food-missioned inbuilt radar guided you to a local festival..... >I walked around and then spotted a food vendor, STEAK and CHEESE SUB- >SANDWICHES with ONIONS and PEPPERS, $6.00!!! >It was piled high and hot off the grill. > >So here I am. PCa, Mets, Chemo, hair falling out and eating a steak >and cheese sub in the blazing sun like a human vacuum cleaner. > >Yeah, this is tough duty. Not so tough as you thought, kh. You got it better than us over here. You wrote in your first post: > .......drove 65-70 mph through the rain. The speed limit is 65. > Regular gas is over $4.00/gallon and people are slowing down.... I got calculating. US gallon = 0.8327 UK. Our cheapest 'gas' (petrol) is 118p. a litre. At current rates of exchange, due to a Stalinist government raking about 70% of the price in taxes, we poor sheep are paying nearly $9 a gallon (8.733 to be precise). So you can smile and go a little bit faster - for the moment. Keep smiling, keep eating, keep doing it your way, keep reporting. Kind regards. Best wishes to all MikeHi > Actually, when I quoted Winston Churchill for his "never, never, > never, never give up I didn't get it quite right. What he said was > even more relevant. It was 'never give in"... (implying seemingly > ovewhelming force - I have the salient portion of this speech hanging on the wall above my desk. "Never give in, never, never, never, never - in nothing, great or small, large or petty - never give in except to convictions of honour and good sense. Never yield to force; never yield to the apparently overwhelming might of the enemy." 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 >> Actually, when I quoted Winston Churchill for his "never, never, >> never, never give up I didn't get it quite right. What he said was [quoted text clipped - 7 lines] >sense. Never yield to force; never yield to the apparently overwhelming >might of the enemy." Confirms you're a great guy, Steve. Kind regards best wishes to all MikeHi On Jun 16, 2:40 pm, Mik...@anon.com wrote: > Confirms you're a great guy, Steve. Yep Steve is a good one. I'm up at Johns Hopkins at OutPatient on their JHGuestNet wifi. It's for a bone scan and a CAT scan. Whew. They just gave me the "technicron" injection for the bone scan. I have to come back at 2:30 for the scan itself. -10 minutes pass- I'm over in another building, Weinberg, waiting for time on the CAT scan. I climbed a bunch of stairs to get here. Haha, getting my exercise!!! I asked them for a CD of my scans, I have to go over to "archives" and they'll burn one for me. It's good to know that they'll burn CDs. I can take these to my other docs. There's someone playing "Happy Birthday" on the piano in the lobby. Now they're playing :"when the Saints come marching in" I'm doing pretty good today. I got about 7, 8 hours sleep and feel almost normal. Head clear, energy level up. I should be outside doing real work. There's the servitor with two vodka-martini's for me. -GAK- This isn't a vodka-martini!!! This is cherry Koolaid with a constrast solution for the CAT scan!!! -Yuk-!!! -kh This is the night before the 4th infusion of Taxotere and the 3rd of CNTO(328). I've charged up my laptop and have not taken the Decadron yet. I take that at 9 PM. Again in the morning and then just before the infusion. 24 mg total. So far, the Taxotere and the CNTO(328) have been "tolerable". While I have all the side effects, they have not prevented me from working. The infusion is on a 3 week cycle. The week before the infusion, I feel almost normal. I AM weak. The stomach issues continue. I am tired and sleep more. I have a funny dark spot on my thumbnail (this is supposedly a side effect). I did the 6 flights of stairs again today. 14 steps per flight. It seemed a little easier. A couple times a day I have leg or arm jitters. My weight is up about 5 pounds in the last 2 weeks. It's the steroids. I got an email from one of us. I don't check my email enough. I've detailed how this has been going. Speaking of going, my hair is sparse, Back, Sack, and Crack, not much left. -kh the smoothest labrat in the cage. Test Results. 6/20/2008 ANC -1530 PSA - 3.6. Dropping! The Taxotere and CNTO(328) are hammering the cancer. Bone scan - hot spots are smaller, not as bright. CAT-scan - tumors stable to shrinking JH says the significance is that the PSA has fallen from 18 to 3.6 in 3 treatments. I'm here for the 4th infustion of Taxotere today. Sometimes it can take 6 months to a year to kick prostate cancer's butt. 6/24/2008 They pulled a little more blood this morning. ANC - 5710. I'm in the waiting area and overhear other patients talking about their ANC, 200, 400, numbers like that. They say theirs creeps up slowly. Mine was just over 300 a week ago. It rocketed up. I don't know if it's my treatment protocol or because I'm a bit younger than the other patients. I've taken the 3 Decadron doses and feel cranked, This was on top of my morning coffee and Pregnesone. ' BP - 140/85, yeah cranked on steroids. I brought my own snacks, cashew nuts. They give out snacks with too many carbs. Although the steroids have my mouth ready for Oreos and potato chips, the cashews will hold me until I can put my order in for a Roast Beef and cheese sub-sandwich. 1 hour of battery power left. Then I have to move to a wall plug. The doc's assistants debriefed me - sharing with you, my back is still stiff. I'm tired after the infusion for about 5 days. I don't have as much stamina as I'd like but I'm working a full day and walking 10 minutes a couple times a day. This is from the cheap parking lot to my desk. CHEAP! Their assessment is that I'm at the mild end of all the side effects, "this lab rat, HOSTILE-17, is tolerating the treatment well." Johns Hopkins is a few miles from Baltimore's Little Italy, you have not lived until you dine there. They know how to prepare veal. I'd be broke and 300 pounds if I ate there regularly. In central Baltimore is the Lexington Market, oh my, seafood subs, crab cakes, deli food almost as good as New York, cheeses, whatever you want. Buy some to eat there and some to take home. Competing with both is the Inner Harbor, much more touristy, I'd pass and live the life of a local. -kh My mouth is ready for the roast beef!! Let's get with the infusion!!! 2:16 PM "Attention, attention, a code red emergency has been declared. Emergency procedures.. " lights flashing. here I am hooked up to a machine, am I supposed to unplug it and run for it? 2:20 PM "The fire drill is over.." Geesh. Scare a guy, will you. During the fire drill the Taxotere infusion flipped over to the CNTO(328). I didn't feel a thing. From past trials, I'll have trouble sleeping for a couple days, then I'll be beat and have a little head-fog during the day. 5 or 6 hours sleep isn't enough. I'll nap a lot this weekend and after that will be able to work at near full power. I'm feeling some tingling in my feet. This is a side effect of the Taxotere and the Decadron helps mitigate that, not that it's a big deal. After the cashew nuts, I packed my mouth with all the junk food lying around here, graham crackers, oreos, a 6 ounce Pepsi, a 12 ounce Coke, a 4 ounce orange juice. I had a big roast beef and colby cheese sandwich for lunch. Heavy on the sugar and carbs but the bang of steroids will amp up the hunger. If I had been flying an American airline, I'd have to pay $15 or $20 for that food. Most of it was gratis, Someone please explain how come a Hospital is serving better and cheaper food than an airline? OK, so I only fly coach, but still. Free Internet and free cable TV. No one confiscating my Leatherman Micra. Oops, either the airconditioning has failed or I'm having a major hot flash. I'm wearing a light Haynes cotton T-shirt and cotton slacks. Sweat is pouring off me. . I'm taking off my shoes, my feet are sweating now. I've noticed that about half the patients wear New Balance brand shoes. I'm wearing a lessor known competitor, Etonic. I've overheard other patients complaining about being cold so you should bring a sweater or hoodie. They have sheets and blankets if you need it. My belt is tight. Do you suppose it's all the junk food I slammed down? If you're weak or need to rest, you can get an infusion bed. You could take a nap but it's a little noisy. Most infusion stations are recliner chairs in an alcove. There are 15 inch LCD TV's, a guest chair, and usually a small table, like for a dinner tray. The infusion machines are on wheeled hospital IV poles. The pump is about chest level and the battery unit is below. The IV's hang on the top. It's a maze of plastic tubes. If you have to go potty, you just pull the powercord and the machine switches to battery power. The first time I asked but it's so normal that you just do it. It's good to get up once and hour and just stretch and flex. That will help work out the circulation and tingling problems. Tip. Dress comfortably, light clothing, the infusion can kick off a major hot flash. Bring a kit of convenience items, your choice. I have my laptop, AC power cord, jump drive, today's meds. Next time, I'll bring some low-carb snacks. Quality cheese, celery, jerk beef from a good store (not 7-11), sugarfree mints. Cell phone, of course. Reading material. I have work on my laptop and jump drive so I'm good there. This is a long day of sitting around so a few comfort and utility items will help. I hate the Decadron. Maybe I need it during the infusion but I hate the jitters, problem sleeping, the hunger. -kh dealing with it. 1 hour to go on infusion, Taxotere #3, CNTO(328) #4. > 2:16 PM "Attention, attention, a code red emergency has been declared. > Emergency procedures.. " lights flashing. [quoted text clipped - 5 lines] > > Geesh. Scare a guy, will you. I had the opposite experience. I unplugged some widget or another (probably my humidifier mask) to save the staff the hassle, not realizing that would light up the front desk panel. Oh, well, they owed me some middle-of-the-night hassles after keeping me awake most nights. > If I had been flying an American airline, I'd have to pay $15 or $20 > for that food. Most of it was gratis, Leno says AA is now charging people NOT to fly with them. Did you get your bill yet? > Someone please explain how come > a Hospital is serving better and cheaper food than an airline? Our local hospital has very good, very cheap food. We've dropped by the hospital just for lunch, just like it was any other restaurant. I.P. > Test Results. > > 6/20/2008 > > 6/24/2008 As always, great post, kh. Here's the skinny. Last week, they gave me the 3th infusion of the Trial (Taxorere plus CNTO(328), that's counting the "run in" of just Taxotere as infusion number 0. They take blood just before the infusion. PSA = 18 Cycle 0 = just Taxotere PSA = 11 Cycle 1 = Taxotere plus CNTO(328) PSA == 5.6 Cycle 2 = Taxotere plus CNTO(328) PSA = 3.6 Cycle 3 = Taxotere plus CNTO(328) Each cycle is 3 weeks. Here we are. Week 10. JHU says this is a great PSA response. Good-average is a 50% reduction after months and months. Not everyone sees a reduction. I'm a little concerned that the rate of fall is decelerating but who knows. I'll take any reduction of PSA. Here's the part you're wondering about, side effects. As before, the first 5 days after the infusion are like a stomach flu with a collection of bizarre complaints. It's unpleasant but not debilitating. Jittery arms and legs at night. Stomach issues in the morning. Food doesn't taste quite right. Hot flashes, sweats. Bouts of exhaustion. Stamina is off but I'm still climbing the stairs. I did resort to percocet during the worse of it. Took a half of a 10/325 at night. Hate doing that. Napping in the afternoon Saturday and Sunday helped a lot. I give the back of my hand to most side effects. The pain in the middle toe of my left foot is much worse. It flares up after each infusion. I'm sure it's related to the chemo but what's going on? What is it? Gout? Arthritis? My hair continues to fall out. On the other hand, I'm seeing more and more, younger guys shaving their heads. It's about one in ten around here. A couple times, there were stirrings "down there", as if willie is almost willing. What's that all about? I've got an invite to watch 4th fireworks from a pal's waterfront estate. I might pass, my ANC (white cell count) came in under 500 and is falling fast. I've started antibiotics and should avoid crowds, raw fruit and vegetables. Still doing the green tea, pomegranate, blueberry drink. Soy, tofu, calcium, vitamin-D, whatever might give me an edge. QOL guys. Every time I go to Baltimore, I see the really sick, it's about 1 in 3. They're pushed in, slumped in wheelchairs. We're a long way from that. I walk in after driving 60 miles, short hair like boot camp, black T-shirt, standing as straight as I can, wrap around sun glasses, giving the power-fist to the phlebotomists. -kh I might feel like hell but I refuse to look like it. kh, you give great reports, keep your sense of humor and inspire us with your determination and fighting spirit. Thanks. All the best, Ron B. Chicago > PSA = 18 > PSA = 11 > PSA == 5.6 > PSA = 3.6 > > -kh I might feel like hell but I refuse to look like it. Another great report, kh. With food tasting bad, how's your weight? 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 Illegitimati non carborundum >Here's the skinny. > [quoted text clipped - 45 lines] >A couple times, there were stirrings "down there", as if willie is >almost willing. What's that all about? What?! Willie stirrings? kh don't miss out. You seem to be about the only guy in the Universe taking this extraordinary treatment. If willie shows any further signs of rising up, get your lawyer to get you a piece of the patent on the treatment. After all, it's America! >I've got an invite to watch 4th fireworks from a pal's waterfront >estate. I might pass, my ANC (white cell count) came in under 500 and [quoted text clipped - 11 lines] >wrap around sun glasses, giving the power-fist to the >phlebotomists. Like I said, black T shirt, wrap arounds an' all, I ain't meeting you in any one to one challenge...Or maybe I'll take up your darts challenge the night immediately after you've had your 4th or 5th cycle. ...when I note.... >Jittery arms and legs at night. > Stomach issues in the morning. Food doesn't taste quite >right. Hot flashes, sweats. Bouts of exhaustion Night suit you? As I'm looking forward to the large tumbler of Islay you'll owe me after, I'm cheering you on kh to keep giving the finger to 'otomists of all kinds and especially to that nasty big b..tard (dots for the ladies) Pca. Meanwhile, while I'm waiting for your glass, I'll be drinking to you and to continuing wonderful news on PSA declines. Kind regards Best wishes to all MikeHi "Exponential lightspeed". Def: The discovery of the cure for Pca at a speed which defies Einstein (You'd better believe it. The white cells are gathering for the charge). (snip) > Here's the part you're wondering about, side effects. As before, the > first 5 days after the infusion are like a stomach flu with a [quoted text clipped - 9 lines] > > I give the back of my hand to most side effects. (snip) This essay by Lam, one of the best med oncs in the world and a specialist on PCa re: Taxotere and its SEs and what to do about them should prove helpful. I note that the highly complex and technical procedure for preventing "derangements" in the sense of taste involves sucking on ice during the infusion :-) I believe that a patient is not well-served by a physician who fails to address SEs of his/her tx. Regards, Steve J Eek. I neglected to include the link to the Lam article on Taxotere SEs. Here 'tis: http://www.prostate-cancer.org/education/andind/Lam_TaxotereSideEffects.html or http://tinyurl.com/2p4bkx But no one seems to have noticed..... Regards, Steve J > But no one seems to have noticed..... I did. Thanks, the taxotere info was good, especially the ice on the tongue. JHU's infusion center has an ice maker at the door so I'll try that trick. -kh > > But no one seems to have noticed..... > [quoted text clipped - 5 lines] > > -kh kh - you are amazing how you are handling that Taxotere - wish you continuing success. A word of caution about what you put in your mouth - I was offered ice and freezies at the cancer center and thay did a marvelous job of preserving my taste buds, kept my mouth from getting sore but I got a throat infection that was going around at the time (gp saw alot of cases that summer) and my white blood cells were high ( I was on Nuelasta). I'd suggest that you bring your own ice and/or freezies to avoid the risk. Lud > ... > PSA = 3.6 Outstanding! > ... > I give the back of my hand to most side effects. More outstanding! > The pain in the middle toe of my left foot is much worse. It flares > up after each infusion. I'm sure it's related to the chemo but what's > going on? What is it? Gout? Arthritis? I got small joint (fingers and toes) pains on hormone therapy. It's a known side effect of HT, but I don't know if anyone knows why, and have no idea if that's related to chemo too. In any case, I found hot or cold water would relieve the pain very well, and exercise helped too. I'd work my toes up and down in my shoes. > ... > A couple times, there were stirrings "down there", as if willie is > almost willing. What's that all about? I think it must be a sign of life returning. > We're a long way from that. I walk in after driving 60 miles, short > hair like boot camp, black T-shirt, standing as straight as I can, > wrap around sun glasses, giving the power-fist to the > phlebotomists. > > -kh I might feel like hell but I refuse to look like it. You're an inspiration to us all. Keep up the great work and the great reports. Regards, Alan |
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