Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 (snip) > Dr Strum runs the " Prostate Cancer Research Institute " at: > > www.prostate-cancer.org > > and the section on " androgen-independent " PCa is here: > > http://www.prostate-cancer.org/pcricms/node/22 Just a small point: Dr. Strum has not been affiliated with PCRI for several years. The chairman is Mark Scholz, MD. > You'll find a lot of good information there. Agreed. > You can also seek out a local PCa support group. If you're in the US, I > think the American Cancer Society runs a bunch of them -- any major city > should have one. Instead, I recommend Us Too International. Website is http://www.ustoo.com/ Where local chapters can be found. Regards, Steve J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 C wrote: > ... > His PSA is high in spite of hormone blocking, which suggests > that the cancer has become testosterone-independent. Strum's > book will talk about what to do next -- there's a range of > drugs that work on testorterone-independent cancers, but which > are not classed as " chemotherapy drugs " . > > When none of those drugs work, conventional chemotherapy is the > next step. > ... , Most men who are diagnosed with prostate cancer in the U.S. today are diagnosed as a result of a PSA test, long before they have symptoms, and generally while their PSA is still much below 100, often below 10 (mine was 6.3 when I was first diagnosed.) Those men, if they receive good medical attention, will go through the range of treatments that Dr. Strum prescribes. Some of them are cured at an early stage. Some are not cured, but have their cancer held in check for many years. Eventually, for most men who were not cured at the beginning, the treatments all fail or reach a point of such increasing side effects and diminishing returns that the patient decides he's had enough treatment and prefers to live the days left to him the best wayhe can. If your brother is not able to make these decisions for himself, then you, your family, and your brother's doctor need to figure out where he is along the line and what is in his best interest. If his doctor thinks that your brother may respond well to some treatment, such as ketoconazole, estradiol, leukine, or docetaxel (chemotherapy), and thinks that the treatment and side effects will be bearable, then they may be worth trying. If, on the other hand, the treatments or side effects are likely to degrade your brother's quality of life and provide very little life extension, then they may not be in his best interest. Some doctors consider it to be their duty to extend life by any means at all, no matter how little and no matter what the cost. They will recommend every possible treatment, even painful or debilitating ones. It's an understandable viewpoint in a doctor, but it's not necessarily the viewpoint that your or your brother would wish. So, talk to the doctor about ongoing treatments. Ask him what they'll be like for your brother - how they are administered, what side effects they have, and how long they are likely to prolong his life or affect his cancer symptoms. Ask him to think about it from your brother's point of view - in full consideration of the advanced state of his disease and his diminished capability to handle the difficulties. Talk frankly to him about life prolonging treatment vs. palliative care. If you do try the treatments, monitor them. Don't continue them if it looks like they are increasing or prolonging his suffering. Meanwhile, whether or not you try additional treatments, unless your brother dies suddenly, he's going to need hospice care. It can be difficult to find a good place at a price you can afford, so you might find it easier to begin your search early and not wait for a crisis. The doctor may be able to advise you on when it's time to start searching and what places to look at. I know how terribly difficult this is. My wife and I faced very similar problems in caring for my and her parents at the end of their lives. I know that there are no easy answers. I know that, whatever you do, you'll agonize about whether you're doing the right thing. However it is obvious to me just from your message to this group that you are a conscientious and loving sister and that you are doing your best - which is all anyone can do. Your brother is very lucky to have you. Best wishes. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 " mccartney_7@... " wrote: > The PSA level went down to 350, and then up to 1500. He also takes > Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . (Could this have > made the PSA rise this much?) > > I think this is a key point here. The meds were working as intended, but a lapse > in treatment allowed the cancer to continue its march. I'd think he needs to > get back on the treatment as soon as possible and hope it continues its > effectiveness. Huge advances in treatment for advance PC so don't give up hope! Since Casodex is almost never used by itself in the U.S., I assume that the patient had a Lupron, Zoladex, or other LHRH agonist injection. That by itself should have made a much bigger difference than it did if he had a hormone sensitive cancer. A PSA of 350 in spite of the LHRH is extraordinarily high! A rapid rise from that to 1500 is an extraordinary rise. This man has one of the most aggressive cases I've ever heard about, more so than any one I can remember on this group since I joined. I don't think the meds were working for him. The Casodex might have helped, but I wouldn't expect it to have made a big difference. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 Alan In the UK we have used Casodex on its own. I used it for a number of years. Re: Re: Prognosis "mccartney_7" <mccartney_7> wrote:> The PSA level went down to 350, and then up to 1500. He also takes > Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . (Could this have > made the PSA rise this much?)> > I think this is a key point here. The meds were working as intended, but a lapse > in treatment allowed the cancer to continue its march. I'd think he needs to > get back on the treatment as soon as possible and hope it continues its > effectiveness. Huge advances in treatment for advance PC so don't give up hope!Since Casodex is almost never used by itself in the U.S., I assume that the patient had a Lupron, Zoladex, or other LHRH agonist injection. Thatby itself should have made a much bigger difference than it did if he hada hormone sensitive cancer. A PSA of 350 in spite of the LHRH is extraordinarily high! A rapid rise from that to 1500 is an extraordinaryrise. This man has one of the most aggressive cases I've ever heard about, more so than any one I can remember on this group since I joined.I don't think the meds were working for him. The Casodex might havehelped, but I wouldn't expect it to have made a big difference.Alan No virus found in this incoming message.Checked by AVG - www.avg.com Version: 8.5.435 / Virus Database: 271.1.1/2715 - Release Date: 02/28/10 19:34:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 Metcalf wrote: >In the UK we have used Casodex on its own. > >I used it for a number of years. Right. It's my understanding that it is not used on its own in the U.S. I don't know why practice would be different in the two countries, but it is my understanding that that is so. Of course the person who can answer this question for the patient in question is . , was your brother also given an injection of Lupron, Zoladex or Eligard? If not, then what I've said about hormone therapy not working for him is wrong. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 Alan, Yes, my brother is on Lupron injections, every 3 months, along w/ Casodex. Thanks for all the informative responses - sounds better than a roomful of DRs! I'm still reading, ordering books, joining the adv. pro. cancer group in order to even ask questions about Jack. We don't know whether to encourage him to give up li ving alone, and just pamper him for the rest of his life. mentioned that he knew someone who lived for 11 years who was expected to die much sooner. I wonder if that person had PSA levels as high as Jack-2500, 350, 1500? BTW, Jack has Myelodysplastic Syndrome. Does this make a big difference in his outcome? Thanks so much for the info.! >In the UK we have used Casodex on its own.> >I used it for a number of years.Right.It's my understanding that it is not used on its ownin the U.S. I don't know why practice would be differentin the two countries, but it is my understanding thatthat is so.Of course the person who can answer this questionfor the patient in question is ., was your brother also given an injection of Lupron,Zoladex or Eligard? If not, then what I've said abouthormone therapy not working for him is wrong.Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 , This disease that we all have such an interest in (not by choice, for sure) is a most peculiar one and no one can predict the outcome. One long time survivor, Aubrey Pilgrim, who sadly passed away from a brain tumour always said “The Golden Rule of Prostate Cancer is There Are No Rules”. If you go to the index on my site at http://www.yananow.net/Chart-PSA1020.htm#20 you will see a list of men who have very high PSA levels when they were diagnosed. One of the men was Trueman Seamans diagnosed in 1999 with a PSA of 4,212. He too passed away last year – ten years after diagnosis. One reported case (not on my site but in the PCRI Insights Newsletter – the story is headed Overcoming Impotence) was about a man in the United States who had a PSA reading of 3,552 ng/ml in 1991 which climbed to 12,600 ng/ml in 1992. In 1999 his PSA was 109 ng/ml after treatment and he was still working as a chief pilot on the world's largest American cargo airline. He retired in 2008. As I say, there are no guarantees, there are no rules, so each of us must live for today but expect that we may still be here tomorrow. All the best Terry Herbert I have no medical qualifications but I was diagnosed in ‘96: and have learned a bit since then. My sites are at www.yananow.net and www.prostatecancerwatchfulwaiting.co.za Dr “Snuffy” Myers : " As a physician, I am painfully aware that most of the decisions we make with regard to prostate cancer are made with inadequate data " From: ProstateCancerSupport [mailto:ProstateCancerSupport ] On Behalf Of mary mize Sent: Tuesday, 2 March 2010 12:04 PM To: ProstateCancerSupport Subject: Re: Re: Prognosis Alan, Yes, my brother is on Lupron injections, every 3 months, along w/ Casodex. Thanks for all the informative responses - sounds better than a roomful of DRs! I'm still reading, ordering books, joining the adv. pro. cancer group in order to even ask questions about Jack. We don't know whether to encourage him to give up li ving alone, and just pamper him for the rest of his life. mentioned that he knew someone who lived for 11 years who was expected to die much sooner. I wonder if that person had PSA levels as high as Jack-2500, 350, 1500? BTW, Jack has Myelodysplastic Syndrome. Does this make a big difference in his outcome? Thanks so much for the info.! >In the UK we have used Casodex on its own. > >I used it for a number of years. Right. It's my understanding that it is not used on its own in the U.S. I don't know why practice would be different in the two countries, but it is my understanding that that is so. Of course the person who can answer this question for the patient in question is . , was your brother also given an injection of Lupron, Zoladex or Eligard? If not, then what I've said about hormone therapy not working for him is wrong. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 1, 2010 Report Share Posted March 1, 2010 In Europe the standard dose ofCasodex is 150 mg vs. 50 mg inthe States along with Lupron or a similar drugCasodex blocks the testosterone receptors on the prostate cells and the Lupron etc. Halts the production of testosterone. T NowakTypos by IPhone Metcalf <bryan.metcalfvirgin (DOT) net> wrote: >In the UK we have used Casodex on its own. > >I used it for a number of years. Right. It's my understanding that it is not used on its own in the U.S. I don't know why practice would be different in the two countries, but it is my understanding that that is so. Of course the person who can answer this question for the patient in question is . , was your brother also given an injection of Lupron, Zoladex or Eligard? If not, then what I've said about hormone therapy not working for him is wrong. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 2, 2010 Report Share Posted March 2, 2010 Terry Herbert wrote: > ... Trueman Seamans diagnosed in 1999 with a PSA of 4,212. He > too passed away last year - ten years after diagnosis. One > reported case (not on my site but in the PCRI Insights > Newsletter - the story is headed Overcoming Impotence) was > about a man in the United States who had a PSA reading of 3,552 > ng/ml in 1991 which climbed to 12,600 ng/ml in 1992. In 1999 > his PSA was 109 ng/ml after treatment and he was still working > as a chief pilot on the world's largest American cargo airline. > He retired in 2008. > ... I think Terry is absolutely right about this. He's documented specific, clear cases where men who everyone expected to die did not die. Everyone wants to know how long they or their loved one is likely to live with this disease. I never know what is the right thing to tell them. On the one side, I hate to give people false hopes. On the other, I don't want to remove hope when there is a possibility, even if small, that hope is warranted. > As I say, there are no guarantees, there are no rules, so each > of us must live for today but expect that we may still be here > tomorrow. Terry's statement here makes sense to me. Though I think that perhaps his word " expect " is too strong. But he's surely right that it could be a big mistake to expect to die and be totally unprepared to live. , Here's my sense of where your brother is: He has a very aggressive, rapidly growing disease. It has already metastasized to many places in his body. The one treatment that most long term survivors survive on is Androgen Deprivation Therapy (ADT). For example, Trueman Seamans (mentioned above) had his PSA drop from 4,212 to 0.07 by his fifth month on ADT. But Jack's response to ADT was not encouraging. His PSA never went below 150, and ADT doesn't seem to be working now. The treatments left at this point, chemotherapy, second line hormone therapy, experimental drugs, are harder on the patient and typically (though not always!) provide less life extension than ADT. Given all of this, I think it's necessary to be prepared for the very strong possibility that Jack may die some time over the next year. That preparation includes thinking about end-of-life pain management and palliative care, considering any legacy issues ranging from wills and finances to taking photos, spending " quality time " with Jack, and making compassionate decisions about what kinds of extraordinary life prolonging measures are desirable if the cost in quality of life is high and the benefit is small. One good thing for Jack is that this is happening to him at a time when you are still alive and healthy and able to help him. It can be a real tragedy when a person becomes old, sick and disabled and has no family to help him in his last journey. Best wishes, Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 9, 2010 Report Share Posted March 9, 2010 : There are many folks on this list much more experienced and knowledgeable than I am. Please take my comments with this caveat in mind. I think you are being very realistic. Yes - it sounds to me like his cancer is terminal. It is also my sense that pain management will be a key issue to resolve for the remaining time you have together. Anecdotally, I share with you that in April of 2007 ( a year before I was diagnosed with PCa), we had to deal with my Mom's terminal diagnosis of colon cancer. My sisters and I were able to engage Hospice to assist all of us through her last 60 days, and they were a tremendous help. She passed on May 30, 2007. I can't say enough good about the help and insight they provided to us, and the services they were able to muster and bring to bear on our situation.. This is the crux of my advice to you. I'm not certain what part of the world in which you are located, but if Hospice is available in your area, I would at least consult with them. After your consultation, you are certainly under no obligation to use them. With this said, I think you will find their advice helpful, and in the USA, their services are covered by Medicare (and I think Medicaid, which may be applicable to your brother). Also, it is important to note that it is not just your brother you have to care for - it is also yourself and the rest of your loved ones. You are all affected by this situation, and since it appears you may be dealing with an end-of-life situation, you need to understand the stages and the physical manifestations of this journey that your brother is undertaking. Hospice can help explain this, and cam help prepare you and alert you as to what to expect during your part of his journey. On my part, I remember you, your brother and your loved ones in my prayers. Sincerely, Coy , Michigan, USA Re: Prognosis > Hello Group, > Thanks for the warm and informative posts regarding my brother, Jack. I > have gotten more specific information so that hopefully the group will > respond again and I can find out of this will change his outcome. Jack was > dx. w/ PCa 12 to 18 months before he did anything about it, I don't know > what his Gleason Score was, but believe that his PSA was 19, and that that > DR recommended radiation. He was around 52 years of age,and is now 55.5. > Please recall that he has brain damage from an accident as a teenager. > When I discovered that nothing had been done,and that he had rec'd no > treatment whatsoever, I promptly got him to a DR for radiation which he > completed 12/08. Six months later in 6/09, he went to his primary DR with > arm pain, and scans revealed that the cancer had spread throughout his > entire skeletal system, including the skull. I took him to an oncologist > then who began treating him with Trelstar(in my first post I erroneously > thought that the hormone treatment was Lupron) > injections every 3 months and Casodex 50mg daily. Here is the results: > . He has received 3 Trelstar injections beginning 7/09, 10/09, and 1/10, > and will be receiving another this month. > . Jack's PSA level was 2448 at the time of the first Trelstar injection > in 7/2009, and each month from then until 2/2010, it has been: 649, 325, > 403, 526, 1295, 408, 174. > > Does his information change his prognosis, though I know that his PCa is > terminal? Alan, I so appreciated your post, and others, in that it gave > me many ideas of how to help him and also to be realistic about his > future. I need reality because his DR only smiles and tells him he's > doing good, I believe that the DR is concerned (I am, too)that Jack cannot > take the truth in consideration of his mental condition, but neither will > he be frank privately. I would appreciate anyone being as candid as > possible regarding Jack's condition so that I can begin to make plans to > provide the best for him. > Very Sincerely, > > > >> >> >> This is my first post. I would genuinely appreciate anyone addressing >> my problem. I'm very confused about my brother, Jack and his >> " situation " with stage 4, pros. cancer. Our family needs answers, and >> his oncologist is vague to the point that we don't know what to do. >> Jack is 54, and has brain damage resulting from an accident when he >> was a teen. He had 45 days of radiation, and within a few months the >> cancer spread throughout the skeletal system. He was referred to an >> oncologist around 6 months ago and began hormone treatment with a PSA >> of 2500. The PSA level went down to 350, and then up to 1500. He also >> takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . >> (Could this have made the PSA rise this much?) The dr. says that if >> hormone tmt. fails to work or quits working that chemo. will be next. >> It is terribly frustrating to not know how to talk/interact w/ Jack, >> or particularly to plan for whatever future he has left, esp. >> considering his brain damage. I'm sure that the dr. is uncertain about >> what kind of info. Jack can mentally handle. I've talked to the dr. >> alone, he was very rushed and brief. He says that he has had patients >> " live for many years on hormone tmt., and also on chemo. tmt. " . Jack >> weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain >> that starts in the shoulder/ arm area , then radiates throughout. Jack >> lives alone for the past 5 years since our mother died, and has gotten >> along well despite his frontal lobe brain damage. Can anyone tell me >> more than the doctor will? How do I plan for him? What can I expect to >> be happening to him medically? Where can I find information that will >> address this stage of his everyday experience? I will appreciate any >> answers. >> > > > > > ------------------------------------ > > There are just two rules for this group > 1 No Spam > 2 Be kind to others > > Please recognise that Prostate Cancerhas different guises and needs > different levels of treatment and in some cases no treatment at all. Some > men even with all options offered chose radical options that you would not > choose. We only ask that people be informed before choice is made, we > cannot and should not tell other members what to do, other than look at > other options. > > Try to delete old material that is no longer applying when clicking reply > Try to change the title if the content requires it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 RE: concerning HospiceI have also had the experience working with Hospice when my father died 1 and 1/2 years ago. He had Parkinson's...but this is not what he died of. He died of starvation, and the moraphine that Hospice told us to give him every 4 hrs, whether he needed it or not. The medications he was given contributed greatly to his inability to eat, drink and communicate. He could do all this before they came in.I know Hospice can be very helpful in many circumstances. But before you call Hospice, know what your area Hospice will and will not do.I expressed my concern to my Hospice team, that if I wanted to request an "iv hydration" for my father, it should be given. As this would keep him more comfortable and lucid. Hospice disagreed. They felt this was an "extra measure life extending" therapy. I stated that I felt every time they came, my father got worse, and when he started with them, the doctors and even hospice people were not sure he even qualified, and that he could live a long time. However, within 3 weeks he was dead. I told them I felt like I was killing him, and not helping him! It was terrible for me! Today I know that I am not alone, and even my mother has mentioned to me now, after my father's death, that she thinks our area Hospice did some questionable things!I truly know that sometimes Hospice can expediate a death...even if they say it is all compasionate care! I am not the only one who feels this way, as I have spoken to others in our area who have felt similar. My mother and sister did not feel this way at the time, as theyver, they were just hoping my father would die quickly and without pain! I on the other hand, have worked both in the medical field, and social work, and felt I was going crazy, because i did not expect to feel this way at all about Hospice. In fact, I was the one that suggested it, hoping that they could at least get and give the anxiety medication my father needed to keep him calm. This was his biggest complaint. Not pain! I kept saying to a couple nurse friends of mine, "It just does not seem right. I feel Hospice may be causeing my father to die quicker by the medications they are asking us to give him. Yes it may be easier on us...but I do not feel he wants to die this way (starvation and dehydration). "This is a touchy subject. But I have been discussing this with many nursing home nurses....and they agree with me, that you must be very clear what you want and do not want with Hospice...and that each hospice is different.My prayers are with you in your decision.And I believe we have some very excellent Hospice programs in the world...just do your homework!To: ProstateCancerSupport Sent: Tue, March 9, 2010 8:49:27 PMSubject: Re: Re: Prognosis : There are many folks on this list much more experienced and knowledgeable than I am. Please take my comments with this caveat in mind. I think you are being very realistic. Yes - it sounds to me like his cancer is terminal. It is also my sense that pain management will be a key issue to resolve for the remaining time you have together. Anecdotally, I share with you that in April of 2007 ( a year before I was diagnosed with PCa), we had to deal with my Mom's terminal diagnosis of colon cancer. My sisters and I were able to engage Hospice to assist all of us through her last 60 days, and they were a tremendous help. She passed on May 30, 2007. I can't say enough good about the help and insight they provided to us, and the services they were able to muster and bring to bear on our situation.. This is the crux of my advice to you. I'm not certain what part of the world in which you are located, but if Hospice is available in your area, I would at least consult with them. After your consultation, you are certainly under no obligation to use them. With this said, I think you will find their advice helpful, and in the USA, their services are covered by Medicare (and I think Medicaid, which may be applicable to your brother). Also, it is important to note that it is not just your brother you have to care for - it is also yourself and the rest of your loved ones. You are all affected by this situation, and since it appears you may be dealing with an end-of-life situation, you need to understand the stages and the physical manifestations of this journey that your brother is undertaking. Hospice can help explain this, and cam help prepare you and alert you as to what to expect during your part of his journey. On my part, I remember you, your brother and your loved ones in my prayers. Sincerely, Coy , Michigan, USA [ProstateCancerSupp ort] Re: Prognosis > Hello Group, > Thanks for the warm and informative posts regarding my brother, Jack. I > have gotten more specific information so that hopefully the group will > respond again and I can find out of this will change his outcome. Jack was > dx. w/ PCa 12 to 18 months before he did anything about it, I don't know > what his Gleason Score was, but believe that his PSA was 19, and that that > DR recommended radiation. He was around 52 years of age,and is now 55.5. > Please recall that he has brain damage from an accident as a teenager. > When I discovered that nothing had been done,and that he had rec'd no > treatment whatsoever, I promptly got him to a DR for radiation which he > completed 12/08. Six months later in 6/09, he went to his primary DR with > arm pain, and scans revealed that the cancer had spread throughout his > entire skeletal system, including the skull. I took him to an oncologist > then who began treating him with Trelstar(in my first post I erroneously > thought that the hormone treatment was Lupron) > injections every 3 months and Casodex 50mg daily. Here is the results: > . He has received 3 Trelstar injections beginning 7/09, 10/09, and 1/10, > and will be receiving another this month. > . Jack's PSA level was 2448 at the time of the first Trelstar injection > in 7/2009, and each month from then until 2/2010, it has been: 649, 325, > 403, 526, 1295, 408, 174. > > Does his information change his prognosis, though I know that his PCa is > terminal? Alan, I so appreciated your post, and others, in that it gave > me many ideas of how to help him and also to be realistic about his > future. I need reality because his DR only smiles and tells him he's > doing good, I believe that the DR is concerned (I am, too)that Jack cannot > take the truth in consideration of his mental condition, but neither will > he be frank privately. I would appreciate anyone being as candid as > possible regarding Jack's condition so that I can begin to make plans to > provide the best for him. > Very Sincerely, > > > >> >> >> This is my first post. I would genuinely appreciate anyone addressing >> my problem. I'm very confused about my brother, Jack and his >> "situation" with stage 4, pros. cancer. Our family needs answers, and >> his oncologist is vague to the point that we don't know what to do. >> Jack is 54, and has brain damage resulting from an accident when he >> was a teen. He had 45 days of radiation, and within a few months the >> cancer spread throughout the skeletal system. He was referred to an >> oncologist around 6 months ago and began hormone treatment with a PSA >> of 2500. The PSA level went down to 350, and then up to 1500. He also >> takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. . >> (Could this have made the PSA rise this much?) The dr. says that if >> hormone tmt. fails to work or quits working that chemo. will be next. >> It is terribly frustrating to not know how to talk/interact w/ Jack, >> or particularly to plan for whatever future he has left, esp. >> considering his brain damage. I'm sure that the dr. is uncertain about >> what kind of info. Jack can mentally handle. I've talked to the dr. >> alone, he was very rushed and brief. He says that he has had patients >> "live for many years on hormone tmt., and also on chemo. tmt.". Jack >> weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain >> that starts in the shoulder/ arm area , then radiates throughout. Jack >> lives alone for the past 5 years since our mother died, and has gotten >> along well despite his frontal lobe brain damage. Can anyone tell me >> more than the doctor will? How do I plan for him? What can I expect to >> be happening to him medically? Where can I find information that will >> address this stage of his everyday experience? I will appreciate any >> answers. >> > > > > > ------------ --------- --------- ------ > > There are just two rules for this group > 1 No Spam > 2 Be kind to others > > Please recognise that Prostate Cancerhas different guises and needs > different levels of treatment and in some cases no treatment at all. Some > men even with all options offered chose radical options that you would not > choose. We only ask that people be informed before choice is made, we > cannot and should not tell other members what to do, other than look at > other options. > > Try to delete old material that is no longer applying when clicking reply > Try to change the title if the content requires it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 I don't want to prolong this thread as it is somewhat OT. I agree - you need to be clear with Hopsice (and with your Uro, Oncologist, General Practitioner, Radiologist) about your medical needs. You have to take charge of the situation and if it is not "right", do your best to replace the unacceptable provider. In my area, we are blessed with a Hospice that has a knowledgeable, skilled, attentive and compassionate staff. My suggestion was just that - a suggestion, based on my own experience. All situations are unique, and all aspects of medical care vary greatly for all people and all geographic areas. The performance of "due diligence" before "hiring" any doctor or other medical care provider is essential. Coy [ProstateCancerSupp ort] Re: Prognosis> Hello Group,> Thanks for the warm and informative posts regarding my brother, Jack. I > have gotten more specific information so that hopefully the group will > respond again and I can find out of this will change his outcome. Jack was > dx. w/ PCa 12 to 18 months before he did anything about it, I don't know > what his Gleason Score was, but believe that his PSA was 19, and that that > DR recommended radiation. He was around 52 years of age,and is now 55.5. > Please recall that he has brain damage from an accident as a teenager. > When I discovered that nothing had been done,and that he had rec'd no > treatment whatsoever, I promptly got him to a DR for radiation which he > completed 12/08. Six months later in 6/09, he went to his primary DR with > arm pain, and scans revealed that the cancer had spread throughout his > entire skeletal system, including the skull. I took him to an oncologist > then who began treating him with Trelstar(in my first post I erroneously > thought that the hormone treatment was Lupron)> injections every 3 months and Casodex 50mg daily. Here is the results:> . He has received 3 Trelstar injections beginning 7/09, 10/09, and 1/10, > and will be receiving another this month.> . Jack's PSA level was 2448 at the time of the first Trelstar injection > in 7/2009, and each month from then until 2/2010, it has been: 649, 325, > 403, 526, 1295, 408, 174.>> Does his information change his prognosis, though I know that his PCa is > terminal? Alan, I so appreciated your post, and others, in that it gave > me many ideas of how to help him and also to be realistic about his > future. I need reality because his DR only smiles and tells him he's > doing good, I believe that the DR is concerned (I am, too)that Jack cannot > take the truth in consideration of his mental condition, but neither will > he be frank privately. I would appreciate anyone being as candid as > possible regarding Jack's condition so that I can begin to make plans to > provide the best for him.> Very Sincerely,> >> >>>>>> This is my first post. I would genuinely appreciate anyone addressing>> my problem. I'm very confused about my brother, Jack and his>> "situation" with stage 4, pros. cancer. Our family needs answers, and>> his oncologist is vague to the point that we don't know what to do.>> Jack is 54, and has brain damage resulting from an accident when he>> was a teen. He had 45 days of radiation, and within a few months the>> cancer spread throughout the skeletal system. He was referred to an>> oncologist around 6 months ago and began hormone treatment with a PSA>> of 2500. The PSA level went down to 350, and then up to 1500. He also>> takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. .>> (Could this have made the PSA rise this much?) The dr. says that if>> hormone tmt. fails to work or quits working that chemo. will be next.>> It is terribly frustrating to not know how to talk/interact w/ Jack,>> or particularly to plan for whatever future he has left, esp.>> considering his brain damage. I'm sure that the dr. is uncertain about>> what kind of info. Jack can mentally handle. I've talked to the dr.>> alone, he was very rushed and brief. He says that he has had patients>> "live for many years on hormone tmt., and also on chemo. tmt.". Jack>> weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain>> that starts in the shoulder/ arm area , then radiates throughout. Jack>> lives alone for the past 5 years since our mother died, and has gotten>> along well despite his frontal lobe brain damage. Can anyone tell me>> more than the doctor will? How do I plan for him? What can I expect to>> be happening to him medically? Where can I find information that will>> address this stage of his everyday experience? I will appreciate any>> answers. >>>>>>> ------------ --------- --------- ------>> There are just two rules for this group> 1 No Spam> 2 Be kind to others>> Please recognise that Prostate Cancerhas different guises and needs > different levels of treatment and in some cases no treatment at all. Some > men even with all options offered chose radical options that you would not > choose. We only ask that people be informed before choice is made, we > cannot and should not tell other members what to do, other than look at > other options.>> Try to delete old material that is no longer applying when clicking reply> Try to change the title if the content requires it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 so right dave!To: ProstateCancerSupport Sent: Wed, March 10, 2010 10:21:19 AMSubject: Re: Re: Prognosis I don't want to prolong this thread as it is somewhat OT. I agree - you need to be clear with Hopsice (and with your Uro, Oncologist, General Practitioner, Radiologist) about your medical needs. You have to take charge of the situation and if it is not "right", do your best to replace the unacceptable provider. In my area, we are blessed with a Hospice that has a knowledgeable, skilled, attentive and compassionate staff. My suggestion was just that - a suggestion, based on my own experience. All situations are unique, and all aspects of medical care vary greatly for all people and all geographic areas. The performance of "due diligence" before "hiring" any doctor or other medical care provider is essential. Coy [ProstateCancerSupp ort] Re: Prognosis> Hello Group,> Thanks for the warm and informative posts regarding my brother, Jack. I > have gotten more specific information so that hopefully the group will > respond again and I can find out of this will change his outcome. Jack was > dx. w/ PCa 12 to 18 months before he did anything about it, I don't know > what his Gleason Score was, but believe that his PSA was 19, and that that > DR recommended radiation. He was around 52 years of age,and is now 55.5. > Please recall that he has brain damage from an accident as a teenager. > When I discovered that nothing had been done,and that he had rec'd no > treatment whatsoever, I promptly got him to a DR for radiation which he > completed 12/08. Six months later in 6/09, he went to his primary DR with > arm pain, and scans revealed that the cancer had spread throughout his > entire skeletal system, including the skull. I took him to an oncologist > then who began treating him with Trelstar(in my first post I erroneously > thought that the hormone treatment was Lupron)> injections every 3 months and Casodex 50mg daily. Here is the results:> . He has received 3 Trelstar injections beginning 7/09, 10/09, and 1/10, > and will be receiving another this month.> . Jack's PSA level was 2448 at the time of the first Trelstar injection > in 7/2009, and each month from then until 2/2010, it has been: 649, 325, > 403, 526, 1295, 408, 174.>> Does his information change his prognosis, though I know that his PCa is > terminal? Alan, I so appreciated your post, and others, in that it gave > me many ideas of how to help him and also to be realistic about his > future. I need reality because his DR only smiles and tells him he's > doing good, I believe that the DR is concerned (I am, too)that Jack cannot > take the truth in consideration of his mental condition, but neither will > he be frank privately. I would appreciate anyone being as candid as > possible regarding Jack's condition so that I can begin to make plans to > provide the best for him.> Very Sincerely,> >> >>>>>> This is my first post. I would genuinely appreciate anyone addressing>> my problem. I'm very confused about my brother, Jack and his>> "situation" with stage 4, pros. cancer. Our family needs answers, and>> his oncologist is vague to the point that we don't know what to do.>> Jack is 54, and has brain damage resulting from an accident when he>> was a teen. He had 45 days of radiation, and within a few months the>> cancer spread throughout the skeletal system. He was referred to an>> oncologist around 6 months ago and began hormone treatment with a PSA>> of 2500. The PSA level went down to 350, and then up to 1500. He also>> takes Casodox(sp.) and failed to take the med. for 4 to 6 weeks. .>> (Could this have made the PSA rise this much?) The dr. says that if>> hormone tmt. fails to work or quits working that chemo. will be next.>> It is terribly frustrating to not know how to talk/interact w/ Jack,>> or particularly to plan for whatever future he has left, esp.>> considering his brain damage. I'm sure that the dr. is uncertain about>> what kind of info. Jack can mentally handle. I've talked to the dr.>> alone, he was very rushed and brief. He says that he has had patients>> "live for many years on hormone tmt., and also on chemo. tmt.". Jack>> weighs 145 lbs., down from 240 lbs. eighteen mos. ago, and claims pain>> that starts in the shoulder/ arm area , then radiates throughout. Jack>> lives alone for the past 5 years since our mother died, and has gotten>> along well despite his frontal lobe brain damage. Can anyone tell me>> more than the doctor will? How do I plan for him? What can I expect to>> be happening to him medically? Where can I find information that will>> address this stage of his everyday experience? I will appreciate any>> answers. >>>>>>> ------------ --------- --------- ------>> There are just two rules for this group> 1 No Spam> 2 Be kind to others>> Please recognise that Prostate Cancerhas different guises and needs > different levels of treatment and in some cases no treatment at all. Some > men even with all options offered chose radical options that you would not > choose. We only ask that people be informed before choice is made, we > cannot and should not tell other members what to do, other than look at > other options.>> Try to delete old material that is no longer applying when clicking reply> Try to change the title if the content requires it Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 10, 2010 Report Share Posted March 10, 2010 mizewoods wrote: > Hello Group, > Thanks for the warm and informative posts regarding my brother, > Jack. I have gotten more specific information so that > hopefully the group will respond again and I can find out of > this will change his outcome. Jack was dx. w/ PCa 12 to 18 > months before he did anything about it, I don't know what his > Gleason Score was, but believe that his PSA was 19, and that > that DR recommended radiation. He was around 52 years of > age,and is now 55.5. Please recall that he has brain damage > from an accident as a teenager. When I discovered that nothing > had been done,and that he had rec'd no treatment whatsoever, I > promptly got him to a DR for radiation which he completed > 12/08. Six months later in 6/09, he went to his primary DR with > arm pain, and scans revealed that the cancer had spread > throughout his entire skeletal system, including the skull. I > took him to an oncologist then who began treating him with > Trelstar(in my first post I erroneously thought that the > hormone treatment was Lupron) injections every 3 months and > Casodex 50mg daily. Here is the results: > . He has received 3 Trelstar injections beginning 7/09, 10/09, > and 1/10, and will be receiving another this month. > . Jack's PSA level was 2448 at the time of the first Trelstar > injection in 7/2009, and each month from then until 2/2010, it > has been: 649, 325, 403, 526, 1295, 408, 174. > > Does his information change his prognosis, though I know that > his PCa is terminal? Alan, I so appreciated your post, and > others, in that it gave me many ideas of how to help him and > also to be realistic about his future. I need reality because > his DR only smiles and tells him he's doing good, I believe > that the DR is concerned (I am, too)that Jack cannot take the > truth in consideration of his mental condition, but neither > will he be frank privately. I would appreciate anyone being as > candid as possible regarding Jack's condition so that I can > begin to make plans to provide the best for him. Very > Sincerely, Hello , The PSA numbers above are better than the ones you had been given before. I presume that the drop from 1295 to 408 and 174 is due to a change in Jack's medication - perhaps it is due to his taking the Casodex regularly that he was supposed to take. I'm no expert at this. I don't know for sure where it's heading. The decrease in PSA is good. Hopefully it will continue. I wish the doctor were able to say more to you, but he himself may not know what to say. As I understand it, it's very hard to predict what's going to happen in terms of PSA numbers or time to the arrival of symptoms, disability, or death. Some doctors are willing to give their best estimates with the understanding that they are only estimates and could be quite wrong. Other doctors hate to say anything at all if they can't say something that is accurate and definitive. If I had to guess, I would guess that Jack will face a rising PSA sometime in the coming year. It might continue to go down for some months, then might start going up. At that point some more medical treatment is possible that might make it go down again in a similar pattern - down a little, then starting to rise again. The other treatments available now - estrogen patches, ketoconazole, chemotherapy, and some of the experimental drugs, have generally not been as powerful as the first line hormone therapy that Jack has been receiving. If he gets a year of life extension and pain relief from the hormone therapy, I would expect he would get less than a year from the other treatments. But as everyone has said, it's impossible to know how anyone will respond to any particular treatment. It's even possible that the PSA will continue going down for month after month and stay low for years. But the odds are probably against that. Looking at the current trend in Jack's PSA, it looks to me like you have enough time to face all of the coming issues in a planned manner. Hopefully, if you need to take Jack for chemotherapy, you'll have a reasonable idea about what to expect for him and how to help him through it. You may also by then have worked out your thinking about when enough is enough and more and harsher treatments are doing more harm than good. You may also have plenty of time to locate a good hospice and a good pain manager and to understand and plan out the finances. I know that the coming year or two will be rough for you and Jack. But millions of people and millions of caregivers go through this cycle of drawn out terminal illness every year. You are not alone. There are lots of people who will understand what you're going through. It's a natural process that is, unfortunately, a part of living. You will undoubtedly make a few mistakes in caring for Jack, but you'll make many more good decisions than bad ones and, overall, I know you'll be doing as much good for Jack as anyone can. Things may get rough from time to time. There may be some low points. Don't allow yourself to get overwhelmed and depressed when they happen. Be sure to focus on the positive side of your own life and on the positive things you can do for Jack. The bad things in life stand beside the good ones, but I think they don't negate the good things. Good things in life are always good and always to be appreciated and enjoyed. Best of luck. Alan Quote Link to comment Share on other sites More sharing options...
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