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Medical Forum / Diseases and Disorders / Prostate Cancer / February 2008aches and pains with new treatment
Just started my clinical trial on Tuesday (Eligard every 4mo for 60 wks, Casodex for 28 days and Docetaxel every 3 wks for 30 wks) and nothing major to report except feeling very achy and blah for starters. I know there are many of you that have been down the ADT route. From what I can tell 30% of Casodex patients do report general aches and pains. Curious if this will dissapate? Regardless I guess I just need to suck it up. I am not supposed to take pain meds with chemo. (snip) > I know there are many of you that have been down the ADT route. From > what I can tell 30% of Casodex patients do report general aches and > pains. Curious if this will dissapate? > > Regardless I guess I just need to suck it up. I am not supposed to > take pain meds with chemo. I recommend discussing it with the medic. Also: Physical Therapy could be helpful. Regards, Steve J > Just started my clinical trial on Tuesday (Eligard every 4mo for 60 > wks, Casodex for 28 days and Docetaxel every 3 wks for 30 wks) and [quoted text clipped - 7 lines] > Regardless I guess I just need to suck it up. I am not supposed to > take pain meds with chemo. Of course, your mileage may vary, but I had quite a bit of achiness and it eventually disappeared. I believe it is because I walk a few miles a day, several days a week in the summer and as far and as often as I can in the winter. I ache now, as a matter of fact, but I haven't been out walking since Sunday. > > Just started my clinical trial on Tuesday (Eligard every 4mo for 60 > > wks, Casodex for 28 days and Docetaxel every 3 wks for 30 wks) and [quoted text clipped - 13 lines] > winter. I ache now, as a matter of fact, but I haven't been out walking > since Sunday. Steve, thanks for prompting me to get off my a.s and take the dogs for a nice walk on Sunday with fresh crisp glistening snow. Sometimes it's easy to fall in a trap. I can either be a victim of this or do what I can to mitigate the side effects. On Feb 23, 11:49 am, "Steve Kramer" <skra...@cinci.rr.com> wrote: Steve, thanks for prompting me to get off my a.s and take the dogs for a nice walk on Sunday with fresh crisp glistening snow. Sometimes it's easy to fall in a trap. I can either be a victim of this or do what I can to mitigate the side effects. ==> I never feel so good (now that I can't have sex) as I do after a brisk walk of decent duration. Whether I started out freezing or ended up sweating and slightly dehydrated, I always feel great. > On Feb 23, 11:49 am, "Steve Kramer" <skra...@cinci.rr.com> wrote: > [quoted text clipped - 6 lines] > walk of decent duration. Whether I started out freezing or ended up > sweating and slightly dehydrated, I always feel great. My elliptical trainer lets me exercise at a constant 66 degrees, in a pleasant breeze, with no risk of slipping or tripping, as fast or slow as I like, watching some TV show I'd watch anyway, when the weather outside is not conducive to a walk or run. It cost me $20 at a garage sale across the street, and has apparently been used primarily as a clothes rack. I.P. > > I know there are many of you that have been down the ADT route. From > what I can tell 30% of Casodex patients do report general aches and > pains. Curious if this will dissapate? I have about given up trying to decide what meds are causing what SE's. My first time on Lupron I had a lot of muscle pain, joint pain, and after one year I went off the stuff for one year. The second time I went on Lupron I was on it for two years. Some of the other SE's were worse, but the muscle pain and joint pains would come and go. After two years I went off of it and had a very nice vacation from the Lupron. Now I have been back on it for 4 months, with the addition of Casodex, and the muscle pain is no big deal, same with joint pain. This time there have been minimal hot flashes, so far, and my fatigue level is much less. Now how can you say what has caused what SE's. Perhaps satins are playing a big role in some of this. Perhaps my increased activity level due to retiring from a desk job is a big factor. Perhaps..., and so on. Best of luck with your clinical trial, keep us updated please. > Perhaps satins are > playing a big role in some of this. Perhaps my increased activity level > due to retiring from a desk job is a big factor. I hope and presume that your doctor tested your blood CK levels the very day you informed him of your muscle pain. Mine surely did, and made sure it was processed immediately. I furthermore presume it was normal, else he'd have treated you immediately. Under those assumptions, the next questions are: 1. How bad is your lipid profile? If you're borderline, I'd be tempted to skip the statins if you suspect they're causing the pain. But the percentage of statin-induced muscle pain is in the single digit unless you answer the next question in the affirmative. 2. Are you doing strength-building exercises or any quite heavy muscular exercise? If so, the muscle pain incidence skyrockets. 3. How are your cognitive abilities doing? Statin impact on several aspects of mental function is coming under increasing fire. I.P. > > Perhaps satins are > > playing a big role in some of this. Perhaps my increased activity level [quoted text clipped - 10 lines] > percentage of statin-induced muscle pain is in the single digit unless > you answer the next question in the affirmative. > 2. Are you doing strength-building exercises or any quite heavy muscular > exercise? If so, the muscle pain incidence skyrockets. > 3. How are your cognitive abilities doing? Statin impact on several > aspects of mental function is coming under increasing fire. IP ....thanks for comments. - If CK is part of standard blood panel than I suspect they did. Everything needed to be normal before they'd let me start the regimen. - I have lipids under control with 10mg Lipator. - No strength building not that I couldn't benefit! - Cognitive abilities ok so far...other than some headaches. I guess I need to read up on interaction of statins and ADT. I suspect given I have severely cut back on red meat and cheese I might be position to re-evaluate statin use. > I.P. > - If CK is part of standard blood panel than I suspect they did. It's not a normal blood panel item. It's something your family doctor should have checked to make sure your statin wasn't destroying your muscles. More info starts with http://www.medscape.com/viewarticle/459548 . > I guess I need to read up on interaction of statins and ADT. I don't know of any statin/ADT interaction, but have not looked into it at all. > I have lipids under control with 10mg Lipator. I suspect > given I have severely cut back on red meat and cheese I might be > position to re-evaluate statin use. Obviously, we should change our diet and exercise BEFORE taking drugs for lipids control, and one statin student makes a good case for taking much smaller doses than normally prescribed. http://www.spacedoc.net/ I.P. >> Perhaps satins are playing a big role in some of this. Perhaps my >> increased activity level due to retiring from a desk job is a big factor. [quoted text clipped - 17 lines] > > I.P. In general, my blood levels pre-ADT were all normal, but on the high side of ok. I was not on any medication. After x amount of time on ADT everything from weight to blood pressure, to triglycerides and cholesterol, went through the roof. I think at one reading the triglycerides were almost 500, cholesterol was 300 or so. Statins brought the numbers down a lot, and it appears that a fairly high consumption of salmon helped as well. No, I am not doing anything in the way of muscle building exercises, but my current lifestyle includes cutting and splitting and hauling of firewood, 4-wheeling in the woods, snow shoeing, woodworking in my shop, and in general is somewhat active. Cognitive function has deteriorated and this has been documented by hours of testing by a clinical neurologist. I tested in the upper 5% for cognitive function but at the same time cannot multi-task, have to be very careful to stay on track and not get distracted, have memory issues, and have organization problems. On the bright side, my blood test just came in and wow, my psa has dropped from 2.1 to 0.4 in three months by going back on Lupron plus Casodex. When I went off Lupron a year ago, it had begun to fail and my psa was climbing and the doubling time was under 6 months. I canceled my blood work for today and am going to see my doctor first to address some of the concerns about muscle pain and a few other things before having more blood drawn for cholesterol and such. Let's see now. The ADT (which is of questionable value, I know) is pretty much the reason for the need for the statins. Statins are now looked at with about as much suspicion as the ADT is. Like, how do you get off this train??? I'm getting dizzy. Thanks for your input I.P. . > In general, my blood levels pre-ADT were all normal, but on the high > side of ok. I was not on any medication. After x amount of time on ADT [quoted text clipped - 3 lines] > brought the numbers down a lot, and it appears that a fairly high > consumption of salmon helped as well. That's a known SE of ADT, all right, and one of the reasons ADT is being re-examined. And, yes, salmon helps, but you can get the same benefits with fish oil capsules @ less then 10% of the calories of all that salmon (you would need to eat four servings a day to help your triglycerides. > No, I am not doing anything in the way of muscle building exercises, but > my current lifestyle includes cutting and splitting and hauling of > firewood, 4-wheeling in the woods, snow shoeing, woodworking in my shop, > and in general is somewhat active. I would GUESS that activity level may increase your odds of experiencing muscle SEs from statins. > Cognitive function has deteriorated and this has been documented by > hours of testing by a clinical neurologist. I tested in the upper 5% > for cognitive function but at the same time cannot multi-task, have to > be very careful to stay on track and not get distracted, have memory > issues, and have organization problems. ADT, statins, and age, in that decreasing order, are each known to cause symptoms like yours. Combined ... who knows? This is one of the reasons I object when anyone says we can just take other meds to counteract ADT SEs. It ain't that simple. > On the bright side, my blood test just came in and wow, my psa has > dropped from 2.1 to 0.4 in three months by going back on Lupron plus > Casodex. When I went off Lupron a year ago, it had begun to fail and my > psa was climbing and the doubling time was under 6 months. Meanwhile, your androgen-independent cancer is rockin' along doing its think in blissful ignorance of your ADT. I will be doing a lot more reading up on that process before subjecting myself to ADT. > I canceled my blood work for today and am going to see my doctor first > to address some of the concerns about muscle pain and a few other things > before having more blood drawn for cholesterol and such. I hope this isn't the first time you've notified your doctor about your muscle pain. He, the patient information sheet, and every statin ad and commercial you've ever seen all told you to INSTANTLY report ny muscle pain, as in many cases (small percentage but still high raw numbers) it is life-threatening. The CK test distinguishes between mere pain and its life-threatening escalation called rhabdomyolysis. I also hope you're not canceling lab work based on stuff you read from internet w.nkers like myself. I can see doing and reading MORE based on it, but not LESS. > Let's see now. The ADT (which is of questionable value, I know) is > pretty much the reason for the need for the statins. Statins are now > looked at with about as much suspicion as the ADT is. Like, how do you > get off this train??? Read. Keep notes on your med and effect sequences. Ask doctors and informed laymen for facts, opinions, and pointers to more literature. Ask your docs about relevant tests. And although it's never too late to get off the train, avoiding boarding in the first place is one possible alternative some choose, right or wrong. I.P. > ADT, statins, and age, in that decreasing order, are each known to cause > symptoms like yours. Combined ... who knows? This is one of the reasons > I object when anyone says we can just take other meds to counteract ADT > SEs. It ain't that simple. I just heard another example of this on the radio minutes ago, with the announcement that antidepressants like and including Prozac are no more effective than placebos. That was just a media sound bite, and I missed the study source, but I'm sure Google will provide more details. Just think: maybe chocolate works as well as Prozac. I.P. > > ADT, statins, and age, in that decreasing order, are each known to cause > > symptoms like yours. Combined ... who knows? This is one of the reasons [quoted text clipped - 9 lines] > > I.P. Yesterday I felt great until mid afternoon when I had some unusual pain/sensation in my chest. It was kind of intense but no radiation or shortness of breath etc but my med onc said to go to get it checked out so now nearly a day later and a over night stay at my local hospital I learned my cardiac enyzmes and EKG is perfect but only thing I have is severe netropenia. Good news after thousands of dollars I don't have to get my lipids tested. My new diet has improved my lipid profile (exc for HDL :( ). What a frigging pain. Bob Most of the side effects you mention are well established in medical literature, except doctors generally don't get involved with non life threatening effects but they play havoc with our quality of life. See my comments below. *** > In general, my blood levels pre-ADT were all normal, but on the high > side of ok. I was not on any medication. After x amount of time on ADT [quoted text clipped - 3 lines] > brought the numbers down a lot, and it appears that a fairly high > consumption of salmon helped as well. *** ADT will raise cholesterol - one study indicates in the range of 30% - depending on the base ready it can cause problems such as high blood pressure. Statins not only bring down the cholesterol levels down but also have an anti-cancer effect - see the writings of Drs Charles E Myers and Steven Strum. *** The fraction of fish oil that really helps is DHA (not to be confused with DHEA - PCa stimulant) - recommended fish oil is 4000 mg daily. Can Alaska salmon is cheap and even better. > No, I am not doing anything in the way of muscle building exercises, but > my current lifestyle includes cutting and splitting and hauling of > firewood, 4-wheeling in the woods, snow shoeing, woodworking in my shop, > and in general is somewhat active. *** Patients that have tracked their performance have found that ADT reduces their physical ability by 60% - if they continue exercising or working - more if not - also depends on age and former fitness. *** Reduction of testosterone causes weaker muscles and bones. > Cognitive function has deteriorated and this has been documented by > hours of testing by a clinical neurologist. I tested in the upper 5% > for cognitive function but at the same time cannot multi-task, have to > be very careful to stay on track and not get distracted, have memory > issues, and have organization problems. *** This is extremely variable among individuals. This effect is caused by a decrease of estrogen - which in men is derived from testosterone. Helpful countermeasures are estradiol patches (50 mcg Climara) or estradiol gel and DHA omega-3 oil capsules. Both help with short term memory loss and some multi-tasking and help also feel emotionally better. Loss of estrogen can cause depression as well as hot flashes. > On the bright side, my blood test just came in and wow, my psa has > dropped from 2.1 to 0.4 in three months by going back on Lupron plus > Casodex. When I went off Lupron a year ago, it had begun to fail and my > psa was climbing and the doubling time was under 6 months. *** A good response is if your PSA drops below 0.05 and stys there for 12 months. > I canceled my blood work for today and am going to see my doctor first > to address some of the concerns about muscle pain and a few other things > before having more blood drawn for cholesterol and such. *** Muscle pain may be a nuisance but ADT causes major bone loss which can be serious - must be checked with Bone-Mineral-Density test , bisphosphonates help but have other side effects. > Let's see now. The ADT (which is of questionable value, I know) is > pretty much the reason for the need for the statins. Statins are now > looked at with about as much suspicion as the ADT is. Like, how do you > get off this train??? I'm getting dizzy. *** ADT has proven value at prolonging life but it costs in side effects - each patient must make a choice accordingly. The most benign ADT is with Estradiol patches as per OCKRIM's studies - the only side effect is breast enlargement. Not only is it dizzying but also frustrating, ruins our QOL and intrudes on our and our loved ones lives when we get to that stage in life when it is "Fix Or Repair Daily". > *** The fraction of fish oil that really helps is DHA (not to be > confused with DHEA - PCa stimulant) - recommended fish oil is 4000 mg > daily. Can Alaska salmon is cheap and even better. Fish oil capsules are equally effective at lipid moderation. Lowering your triglycerides with canned salmon (four servings are required to lower triglycerides) vs fish oil capsules (four) would: 1. Cost 6 times more ($2.50 vs 40 cents a day) than red sockeye salmon (pink tastes awful). 2. Put 40 pounds a year on you. (440 calories vs 36 per day.) 3. Provide almost our daily quota of salt all by itself. 4. Stink up the kitchen. > *** Muscle pain may be a nuisance Yeah .... dying of heart muscle destruction or liver failure, losing one's pro football career, and/or a year of severe pain, all for the sake of a few numbers on a lipids chart that may mean little, is very inconvenient. ;-) I.P. > > > [quoted text clipped - 16 lines] > > Best of luck with your clinical trial, keep us updated please. Thanks Bob... I guess I might have to get used to this as part of life. I was on Casodex, alone, for just over 10 months. Aches and pains, lethargy and feeling "blah" were some of the side effects I experienced. Those side effects, and the others, did diminish, gradually, after I stopped taking Casodex. Good luck Burney >Just started my clinical trial on Tuesday (Eligard every 4mo for 60 >wks, Casodex for 28 days and Docetaxel every 3 wks for 30 wks) and [quoted text clipped - 7 lines] >Regardless I guess I just need to suck it up. I am not supposed to >take pain meds with chemo. RP in 1995 (age 52) RT in 2000 ADT (Casodex) 10/06 - 8/07 Latest PSA - 0.18 burney dot huff at mindspring dot com > Just started my clinical trial on Tuesday (Eligard every 4mo for 60 > wks, Casodex for 28 days and Docetaxel every 3 wks for 30 wks) and [quoted text clipped - 7 lines] > Regardless I guess I just need to suck it up. I am not supposed to > take pain meds with chemo. Dominic I assume that you were not on any medications prior to starting the big guns. It is not clear did you start casodex a week before Eligard? If not the the Eligard would cause a testosterone flair in the first week (which could accelerate the PCa growth and cause pain) and and then drop. Also the Doxetaxel will also cause major fatigue and achyness starting after the infusion. Have you had a blood test 7 o 10 days after the chemo? - it causes the neutrofils to drop or disappear leaving you susceptible to infections - I hope this was explained to you. If you write me am email I can send the list of potential problems that I made up for myself. Don't just hang in - there are countermeasures you can take to aleviate some of the adverse effects. Lud |
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