 |
 | Home | Contact Us | FAQ | Search & Site Map | Link to Us |
 | Sign In | Join | Other 45 Sites in Network |
Medical Forum / Diseases and Disorders / Prostate Cancer / July 2008For kh and also my new situation
I wrote: 'My PSA is skyrocketing'. (PSA with nearly 2 point jump in last month, appended). Kh replied: >I didn't realize your PSA was skyrocketing. No-no. I had a PSADT of >less than 30 days ... on Lupron. After gazing in stupefied wonderment at kh's PSADT I humbly amend my post. It should have read: " My PSA is describing a gentle upward arc of doubling in five months, and trebling in eleven." I write it with a big grin, 'cos if kh can PSADT in 30 days and still be gobbling up his daily ice-cream, chocolate covered, (yum, yum, yes) and fancy chicken (so good his nurses want to pinch it) - then I know I can sleep easy. All I need, it seems, is a good dose of kh's food supplement, taxotere. I might even agree to take it now if it's suggested! (Latest month's PSA and the rest appended below). kh's PSA doubling was 'While on Lupron'! What was the point of it then? - ah, of course, the side-effects are awful, so it must be doing us good. kh was told it was for "suppressing Pca". Steve Kramer wrote: > I don't get that. Taxotere targets quickly replicating cells. >Why would they not allow all your cancer cells to quickly replicate and thus get targeted? So I agree with Steve twice over. Your Wizard better have a real good answer. Otherwise tell him to get his wand serviced and cease forthwith jabbing the stuff in your bottom. While I'm here, here's a report about where I am at the moment. 25th June I recorded my experience of Sonablate 500 HIFU. Very briefly again. Prostate and primary ablated by HIFU 1. Seminal vesicle not quite ablated, HIFU 2. In three years, no toxic effects, no cuts, no blood, no post-op pain, no hospital stays (couple of days). Worst side effects were several months after HIFU 1 due to scarring at the bladder neck when I had painful self-cathetering. Ongoing side effects - some occasional small leaks. Lots of fatigue, mental and physical, but age (81 this year) and big stress factor of my wife could account for some of that. With G9, crafty microscopic blighters that were inevitably lurking from beginning sure enough have now created two nodules in lymph node and 'suspicious' stuff near sem.ves. I've also got a complication. I get sharp stabbing pains. Headaches. At any distance I have double vision. I get quite a lot of nausea. So I'm now being independently examined in parallel to the Pca (by a neurologist) who believes I have either paraneoplastic syndrome or myasthenia gravis. I understand they're caused by antibodies fighting cancer cells; they become mercenaries and start attacking the immune system instead. Can't trust anybody these days. Anybody else been diagnosed with this stuff? I *think* the myasthenia stuff has been counted out by a blood test I had. (Won't see that specialist again until August). The paraneo.. etc.. etc is apparently incurable but I don't believe that either - not this day and exponential research age. Anyway I may well have neither. Biggest problem I have with whatever it is is not knowing which pain comes from what! Anyway the pain to date is a nuisance, but quite bearable. Kh wouldn't even notice it. Now, for those of you bored already, here's this weeks' cryptic clue - (and honest, it isn't entirely irrelevant). Question: When is a scuttling rodent like a pig worth twenty-one (old) shillings? Give up? (No - the Brits have already got it.) Answer: When one is a lab-rat and the other's a guinea-pig. Kh wrote of some of his experiences: > I guess that makes me a good labrat. Well, as I have past posted, I was a guinea-pig for HIFU. At the time I started there were trials only up to G7 patients; and well below my age. Relevance of that is that I may not be typical. Certainly the bladder neck block, I know from other patients was untypical. The other relevance is that I'm hoping - intending indeed - to continue. Who knows, I might end up on taxotere -and now I won't need to be pushed kicking and screaming into it knowing the food is good too. But I'm quite convinced toxic solutions are well on the way out. So I'm hoping to delay my advance by hopefully finding non-toxic trials. Mark Emberton my HIFU surgeon, who's done a great job for me over three years has handed me on to a medical oncologist (Steve) at the UCH specialist oncology clinic. UCH is a focal centre for cancer studies. And Steve (if he will excuse the familiarity - haven't even met him yet) has been asked, following my talks with Mark, if he could look at recruiting me into new studies. (But hey -I don't want the placebo!) Maybe into something too, I will ask, that only mice have had the benefit of and I will be willing to jump trial. Maybe a big dose of a few billion of my white cells could knock off the Pca and ambush the renegade anti-bodies causing the other problems at the same time? Now *that* would be worth a bit of guinea-pigging -or even lab-ratting, methinks! I've got an appointment with Steve real quick- in only ten days time. And my condition must be a lot more serious! To see my (totally overburdened -three hours my last wait) surgeon in the hospital, for comfort we were offered a seat. If there wasn't one, we either sat on each other's laps or stood against the wall (mostly the latter). The other comfort was a cold water dispenser. The leaflet with my new appointment tells me - hot drinks are free! And: '..take a seat in the waiting room'. So there must be one! This is the NHS still. Can't compete with kh's individual TV, and Lorna Doon or any other cookies; but it ain't half bad. Will let readers know what happens next after it happens. Kh also wrote: > I'm doing the grocery store thing, tofu (made from soybeans), green >tea, blueberries, ginger, etc. Anything cheap that is rumored to give >an edge, sure, why not. I even made a tofu burger the other week. >That sounds weird but vegans eat stuff like that all the time. Could be a few guys here like me. I'm on my home at home. My wife away. Often feeling knocked out. So I also do the grocery store thing. And I want to be able to make food really quickly, not too worried about 'an edge' - but i do like a bit of mouth-watering. Here's a small contribution. None of it shatteringly new. But I like it : Tin of sweetcorn, and tin of tuna. Mix tuna in bowl with goodly helping mayonnaise. Tagliatelle pasta which cooks in 3 or 4 minutes. Add spoonful olive oil. (Pasta always with lots water). Drain pasta leaving tiny drop in bottom. Back into hot pan. Stir in the tuna mayonnaise mix. Essential tip here. Turn off elec or gas cooker. But keep pan on hot plate while stirring on bottom just enough time to make sure it's all piping hot before coming out of pan. (Otherwise it'll be cold on your plate in minutes). Same treatment , substitute red salmon - or even better, salmon trimmings packet from store. Substitute rice which cooks in 2 minutes (e.g Uncle Ben's - lots of different flavours I go mostly for Pilau, which good, neutral flavour) for pasta. If any of this stuff left over in fridge, before later putting it a minute or so in the microwave, stir in some crème fraiche to brighten it up. Cold stuff. Waitrose Deli sandwich fillers - prawn mayonnaise (best of the supermarket dittos) and coronation chicken. Either one thrown in with Moroccan couscous and coleslaw - 'ruby' coleslaw from Waitrose especially nice. My best straight-out-of the packet cold dish. Tesco honey and mustard chicken. Best one-person ready meals for microwaving: Marks and Sparks. (Minced Beef Hotpot; Lamb casserole). Two minutes. With any of:.. handful from big bags of frozen carrots, or petits pois, Brussels. 5 minutes. Quick, cheap chocolate dessert: Cadbury's Flake (in a pot). Tip the flake into the choc sauce. I gluttonously always add a dash of ice cream. Gotta go and eat now. Before I do. Kh you also let slip in the middle of your post: >I feel the treatment taking my strength away. It's hard to climb >stairs, walk more than a few blocks. I catch myself doing the "push >on the knees to get out of a chair". I'm not letting this beast >beat me. I climb my stairs, walk, stand up straight even if there is >an occasional jab in my back. It's only temporary kh. I for one am relying on you as the pathfinder lighting the way here. Scores more too. Whatever treatment we get. It's attitude attitude attitude. You go on: . > I'm not letting this beast beat me. I climb my stairs, >walk, stand up straight even if there is an occasional jab in my back. You won't let it beat you kh. Nor will we. My kindest regards My best wishes to all MikeHi "Exponential lightspeed". Def: The discovery of the cure for Pca at a speed which defies Einstein. ... > UCH is a focal centre for cancer studies. And Steve (if he will > excuse the familiarity - haven't even met him yet) has been asked, > following my talks with Mark, if he could look at recruiting me into > new studies. (But hey -I don't want the placebo!) ... Mike, Getting the placebo isn't always as bad as it sounds. First of all, it might work! :^) But seriously, in some trials the arrangement is that if the drug works, the patients who got the placebo are allowed to get the real drug, long before the drug is generally approved for everyone. Ask the oncologist about this. Alan Alan said: "But seriously, in some trials the arrangement is that if the drug works, the patients who got the placebo are allowed to get the real drug, long before the drug is generally approved for everyone. Ask the oncologist about this." GREAT point, Alan. > At any distance I have double vision. I get quite a lot of nausea. So > I'm now being independently examined in parallel to the Pca (by a [quoted text clipped - 4 lines] > > Anybody else been diagnosed with this stuff? My daughter has one of them. No cancer or medication that I know of. I think it occurred naturally. But, she was pregnant and wouldn't take meds for it so is now, for all intents and purposes, blind in her left eye. But, that cures double vision.  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 > <Mik...@anon.com> wrote in message > [quoted text clipped - 26 lines] > PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08 > Illegitimati non carborundum Hi Mike, I also have a neurological problem that raised its ugly head the year before I was diagnosed with prostate cancer. Two of my antibodies are eight times higher level than normal. I've been diagnosed as having Multifocal motor neuropathy, (MMN). It statred with muscle wasting in my left index finger and thumb. After my lengthy surgery I also developed a left foot drop. I've had many blood test, spinal tap, cervical MRI's and about seven EMG's and NCS plus second and third opinions. All test came back normal except my auto-antibody test. I don't believe the antibodies attack the immune system as they are part of the immune system. What they usually attack most of the time is parts of the central nervous system. In my case they attack the nerves outer layer and also the axons of the motor nerves. By chipping away at these it will eventually leave one with loss of function in the affected limb or body part that is affected. I've often felt that some toxin enters the body over time and mutates healthy cell causing the immune system to respond. It seems the immune system probably has a tough time distinguishing between healthy cells and unhealthy cells and eventually attacks both. No one seems to really know much about the process but the central nervous system is often the target of these auto-antibodies. My father lived to 96 and all my relatives live into there 90s so I don't have any family history. Ron S. > ... > I don't believe the antibodies attack the immune system as they are > part of the immune system. What they usually attack most of the time > is parts of the central nervous system. In my case they attack the > nerves outer layer and also the axons of the motor nerves. ... Ron, That sounds like what multiple-sclerosis does. I have no idea if it's related or not, but you might be interested in this article reporting a trial at Johns Hopkins that had more success with MS than in previous treatments: http://www.sciencedaily.com/releases/2008/06/080609162053.htm Hopkins does a lot with MS and has other materials on their website. While it looks promising, on the other hand, I don't know if people who have cancer ought to be suppressing their immune systems. You might ask your doctor about this stuff the next time you see him. Unfortunately however, this is all cutting edge science and medicine and I doubt if there are many docs who have much understanding of it. Best of luck. Alan > > ... > > I don't believe the antibodies attack the immune system as they are [quoted text clipped - 30 lines] > > Alan Hi Alan, The article you refer to is giving the patient chemotherapy; Cytoxin which destroys your immune system temporarily. The IVIG that I referred to balances and repairs your immune system. See: http://autoimmunedisease.suite101.com/blog.cfm/ivig_therapy. Ron S. I wrote (Mike)- big slab of snips
. So I'm hoping to delay my advance by hopefully finding non-toxic trials Alan Meyer responded: >in some trials the arrangement is that >if the drug works, the patients who got the placebo are >allowed to get the real drug, long before the drug is >generally approved for everyone. >Ask the oncologist about this. Good point Alan, thanks. I'll ask, on the basis that if he doesn't say 'yes' I will inform him my ear-trumpet has gone deaf, and that my uncle is Tony Soprano. I also wrote -more slab snips: I've also got a complication. I get sharp stabbing pains. Headaches. At any distance I have double vision. I get quite a lot of nausea. So I'm now being independently examined in parallel to the Pca (by a neurologist) who believes I have either paraneoplastic syndrome or myasthenia gravis .. Anybody else been diagnosed with this stuff? Steve K wrote: >My daughter has one of them. No cancer or medication that I know of. > I think it occurred naturally. But, she was pregnant and wouldn't take meds >for it so is now, for all intents and purposes, blind in her left eye. But, >that cures double vision. Steve worst time it happened was when I was looking at ducks a few yards away. The only way I could be sure there were two, not four floating serenely by, I had to shut one eye. I find it quite difficult to hold this for any length of time. As you point out, if I have got this new stuff it could save me the effort. I knew there had to be a silver lining somewhere! On a slightly more serious note Steve. You write re your daughter: >no cancer that I know of. My reading since my presumed diagnosis is that often this neurological stuff precedes the finding of cancer. (Note Ronju's opening sentence: >I also have a neurological problem that raised its ugly head the year >*before* I was diagnosed with prostate cancer. (My emphasis) How long ago was your daughter affected? Sounds like she hasn't actually been checked for cancer? Has she? I do wish her well. I also wrote: I understand they're caused by antibodies fighting cancer cells; they become mercenaries and start attacking the immune system instead. Ronju you comment: >I don't believe the antibodies attack the immune system as they >are part of the immune system. You're right Ronju. Rather, as part of the immune system they turn renegade, and attack normal tissues. This is a quote I found searching: "When a tumor arises, the body may produce antibodies to fight it by binding to and destroying tumor cells. Unfortunately, in some cases, these antibodies cross-react with normal tissues and destroy them, which may stimulate the onset of paraneoplastic disorders. There are no cures for paraneoplastic syndromes and resulting progressive neurological damage. Generally the presence of cancer determines the diagnosis." (Apologies, I didn't keep the URL) Your neuro problem is Multifocal motor neuropathy, (MMN), different from mine. But the effect seems to be working in similar ways, our fighting cells knocking off the bits they should be protecting. Wow! Now we've got friendly fire to contend with, blue on blue, indeed. Are you getting treatment for it? Is it helping? My very best to you. Best wishes to all MikeHi > My uncle is Tony Soprano. Sorry about your loss... terrible way to go.... > Steve worst time it happened was when I was looking at ducks a few > yards away. The only way I could be sure there were two, not four > floating serenely by, I had to shut one eye. I find it quite difficult > to hold this for any length of time. As you point out, if I have got > this new stuff it could save me the effort. I knew there had to be a > silver lining somewhere! My sister in law has other brain issues and was seeing double. They brought in an optomostrist and he fixed her right up with glasses the counteracted the issue. > How long ago was your daughter affected? Sounds like she hasn't > actually been checked for cancer? Has she? I do wish her well. Her first symptoms were years ago.... sclerdoma? And she's had different issues since, such as you have described... her immune system is waging a war on her body. > I wrote (Mike)- big slab of snips…. > [quoted text clipped - 76 lines] > > MikeHi From my understanding from what my wife tells me if you did have myasthenia gravis, prostate cancer would be the least of your worries. I did take IVIG for ten weeks about two years ago but didn't find it was helpful. I've seen a new muscle specialist this spring and after a number of new test and a sural nerve biopsy, she confirmed the MMN diagnosis and wanted to start me on IVIG plus predinsone this month. I'm not sure if I want to start it as there is no cure and I'm not that disabled as many others are with it. I can still walk without aid and even climbed a couple mountains in the Canadian Rockies a few weeks ago. Most people that take the IVIG treatment show improved strength and it lessens their disability for a few years but in time the effect wears off. I also believe that these neurological problems are much similar to cancer; unknown causes and no known cure. I also find that it is difficult to put the correct classification on ones disease because almost no two are the same. There seems to be a large variety of symptoms that don't fit the classifications that have been established, so often you may be just put into one to have a name so insurance will pay for the treatment. Ron S. I had written, along with loads more: > My uncle is Tony Soprano. Steve K responded >Sorry about your loss... terrible way to go.... Woops Steve. You've maybe given the game away! I watch it by the Series. I'm only in the middle of 5. DON'T on any account, say when! He keeps me going some evenings. Never mind what they say about him. Great guy. Ronju has just posted: >From my understanding from what my wife tells me if you did have >myasthenia gravis, prostate cancer would be the least of your worries. Never mind all that. What am I gonna do evenings if uncle's gone -or going going gone? (Ruined day. Floods of early, anticipatory, tears disabling my keyboard..can't go on..) However - needs must .I asked what treatment Ron was getting: >(doc) confirmed the MMN >diagnosis and wanted to start me on IVIG plus predinsone this month. >I'm not sure if I want to start it as there is no cure and I'm not >that disabled as many others are with it. I can still walk without aid >and even climbed a couple mountains in the Canadian Rockies a few >weeks ago. Tremendous Ron. I have a problem climbing more than a few flights of stairs. Climbing the Rockies, must take strength and stamina. No wonder you're not disposed to take stuff. Good luck for you staying that way for long time to come. Answer to a couple of other points: >Steve K: My sister in law has other brain issues and was seeing double. > They brought in an optomotrist and he fixed her right up with glasses >the counteracted the issue. Saw him early days. He said slight muscle weakness in one eye but it wasn't causing the double vision. But he could give me complicated glasses. I want to know reason. >Alan:
. I don't know if people who have cancer ought to be suppressing >their immune systems. Alan. Absolutely. That was exactly my reaction when first reading that that was one of the treatments. Will certainly want to know the answer. Kind regards Best wishes to all MikHi On Jul 21, 6:31 am, Mik...@anon.com wrote: > I had written, along with loads more: About the double vision. I've had that for 10 or 15 years. The eye doc gave me a prescription that includes "prisms". Looking down on my glasses from above, the lenses are wedge shaped. Around here, it costs the same as other glasses. Last weekend, I spent another morning at a local festival. This is 6 days after the infusion. I won't kid you, I got into trouble. The local temperature was up there, the humidity was high, and I was walking in the sun. The parking lot was uneven, tilted so some of the vendors were up grade from the others. There was no breeze and no shade. I had my camera and a shoulder bag for any purchases. You never know what you'll find at these, it's a combination flea market, crafts, get this junk out of here, cheap stuff from China. There were two food vendors, fortunately one was in the air conditioned pavilion. After a half hour of walking in the sun, I got tired and disoriented. This is walking slow, pausing to chat with people, checking out their wares. I wasn't pushing myself. I was walking slowly. I broke off my walk and headed to the pavillion, got a bacon cheeseburger and a cold fruit drink. Mostly I was hiding from the sun. I walked for another hour and decided to leave without seeing everything. When I got to my car, I saw a fellow unloading a wheelchair. He helped an older gentleman into it, his dad perhaps. I cautioned them about the sun. He asked if there was shade. "yes, there are some vendors in buildings and the food pavilion is air conditioned." I drove home, my car air conditioning was cranked up, even after a half hour in the cool car, I felt shaky and dehydrated. I had some green tea to sip while I drove. Before the treatment, this would have been easy. This is the Middle Atlantic of the U.S. It gets hot here but this isn't Texas or Florida. I had a good time but it was sobering. When the news talks about the elderly and sick needing special attention during hot spells, I guess that's me now. I felt it, I felt the lash but I did walk for an hour and a half, I didn't collapse, I saw interesting things, spoke with several vendors. I spent some cash, got out and about, took pictures. I saw kids, military in uniform, oldsters, young girls, a cross section of people. I walked a couple miles. The top of my bare head got a little more tanned. -kh I felt the lash but I'm not calling PCa, "Massa." > Steve K responded > [quoted text clipped - 4 lines] > He keeps me going some evenings. Never mind what they say about him. > Great guy. Then you'll be happy to know that I have not watched one minute of one episode. |
Reply to this Message |
 Sign In
 Join
 My Latest Posts My Monitored Threads My Blog My Photo Gallery My Profile My Homepage Start New Thread Enable EMail Alerts Rate this Thread
|
©2008 Advenet LLC Privacy Policy - Terms of Use
This website includes both content owned or controlled by Advenet as well as content owned or controlled by third parties.