Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 First you mat want to try ice pack to alleviate some of the swelling. Secondly you can get an RX from your doctor for Estrace cream. Throw away the applicator and to a pea size amount on the skin.. The Estrace helps build up the skin tissue so it is better (probably someone else can explain better than me). I have 2 more suggestions: the first is to use Emu oil. You can get if from the Wild Rose Emu Ranch. Clover is happy to send samples. The second thing that helped me is using a squirt bottle after urination. Use the Estrace 2 times a day for awhile and if it makes you more there are several compounding pharmacies to help. Hope I didn't over helm you and sorry you have to be here. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2003 Report Share Posted January 27, 2003 First you mat want to try ice pack to alleviate some of the swelling. Secondly you can get an RX from your doctor for Estrace cream. Throw away the applicator and to a pea size amount on the skin.. The Estrace helps build up the skin tissue so it is better (probably someone else can explain better than me). I have 2 more suggestions: the first is to use Emu oil. You can get if from the Wild Rose Emu Ranch. Clover is happy to send samples. The second thing that helped me is using a squirt bottle after urination. Use the Estrace 2 times a day for awhile and if it makes you more there are several compounding pharmacies to help. Hope I didn't over helm you and sorry you have to be here. Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 First I would like to start by saying I am not a doctor, however, I have had this problem for 5 years. I did PT and psycho therapy and it didn't work. Recently I went to a doctor who practices out of s Hopkins in Baltimore (not sure where you are from) who seems to know what he is doing. While you are inflamed the PT just may not work. It didn't for me. He said that had to be treated first and then move on from there. He said there is a 75 to 80% successful rate with what he has me doing ... he called it the conservative therapy. And then if that doesn't work possibly surgery. Just something to think about. Hope it helped. Take care and keep your head up. Bobbie > Hi. I'm new to this group, and like to share my story: > A few months after I got married, I realized that it was probably NOT > normal for intercourse to hurt. So after a wild goose chase, I ended > up at a physical therapist for pelvic floor rehabilitation. She > diagnosed me with vaginismus. Part of the physical therapy program > includes working with dialators. But, because the entrance to the > canal was soooo inflamed, I haven't been able to insert a dialator. > The physical therapy program hopes to " heal " (or help) both > disorders. But I am SOOOOO inflamed, that I can't really progress. > I'd like to find a normal ob/gyn that will prescribe some sort of > topical medication to at least temporarily reduce the irritation, so > that I can begin to work with the PT. So that's my story. I'd like to > hear from people about which various topicals have helped them. I > understand that these aren't long term solutions, but I just want to > be able to make it through a 45-minute session with the PT. The last > OB/GYN I went to told me that my vestibulitis will be cured by > yakking it up with a sex therapist twice a week. I was not impressed, > I understand that there is probably a strong mind/body connection > here (and in all illnesses), but I'm a bit skeptical. I would also > like to find a doctor who will talk to me about the possible > connection between oral contraceptives and vestibulitis. I've been > taking Yasmin (I have no idea what that's called in the states!) > since I got married ( a little over a year ago). > In addition, I've also started accupuncture. My practicioner is > hopeful, and is hoping that his medical partner, who has helped women > with various " women's disorders " (painful periods, infertility, > painful intercourse) will be able to take me as a patient. > Okay, that's my story. > I look forward to hearing from all/any of you. > - in Jerusalem (Israel) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 First I would like to start by saying I am not a doctor, however, I have had this problem for 5 years. I did PT and psycho therapy and it didn't work. Recently I went to a doctor who practices out of s Hopkins in Baltimore (not sure where you are from) who seems to know what he is doing. While you are inflamed the PT just may not work. It didn't for me. He said that had to be treated first and then move on from there. He said there is a 75 to 80% successful rate with what he has me doing ... he called it the conservative therapy. And then if that doesn't work possibly surgery. Just something to think about. Hope it helped. Take care and keep your head up. Bobbie > Hi. I'm new to this group, and like to share my story: > A few months after I got married, I realized that it was probably NOT > normal for intercourse to hurt. So after a wild goose chase, I ended > up at a physical therapist for pelvic floor rehabilitation. She > diagnosed me with vaginismus. Part of the physical therapy program > includes working with dialators. But, because the entrance to the > canal was soooo inflamed, I haven't been able to insert a dialator. > The physical therapy program hopes to " heal " (or help) both > disorders. But I am SOOOOO inflamed, that I can't really progress. > I'd like to find a normal ob/gyn that will prescribe some sort of > topical medication to at least temporarily reduce the irritation, so > that I can begin to work with the PT. So that's my story. I'd like to > hear from people about which various topicals have helped them. I > understand that these aren't long term solutions, but I just want to > be able to make it through a 45-minute session with the PT. The last > OB/GYN I went to told me that my vestibulitis will be cured by > yakking it up with a sex therapist twice a week. I was not impressed, > I understand that there is probably a strong mind/body connection > here (and in all illnesses), but I'm a bit skeptical. I would also > like to find a doctor who will talk to me about the possible > connection between oral contraceptives and vestibulitis. I've been > taking Yasmin (I have no idea what that's called in the states!) > since I got married ( a little over a year ago). > In addition, I've also started accupuncture. My practicioner is > hopeful, and is hoping that his medical partner, who has helped women > with various " women's disorders " (painful periods, infertility, > painful intercourse) will be able to take me as a patient. > Okay, that's my story. > I look forward to hearing from all/any of you. > - in Jerusalem (Israel) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 28, 2003 Report Share Posted January 28, 2003 First I would like to start by saying I am not a doctor, however, I have had this problem for 5 years. I did PT and psycho therapy and it didn't work. Recently I went to a doctor who practices out of s Hopkins in Baltimore (not sure where you are from) who seems to know what he is doing. While you are inflamed the PT just may not work. It didn't for me. He said that had to be treated first and then move on from there. He said there is a 75 to 80% successful rate with what he has me doing ... he called it the conservative therapy. And then if that doesn't work possibly surgery. Just something to think about. Hope it helped. Take care and keep your head up. Bobbie > Hi. I'm new to this group, and like to share my story: > A few months after I got married, I realized that it was probably NOT > normal for intercourse to hurt. So after a wild goose chase, I ended > up at a physical therapist for pelvic floor rehabilitation. She > diagnosed me with vaginismus. Part of the physical therapy program > includes working with dialators. But, because the entrance to the > canal was soooo inflamed, I haven't been able to insert a dialator. > The physical therapy program hopes to " heal " (or help) both > disorders. But I am SOOOOO inflamed, that I can't really progress. > I'd like to find a normal ob/gyn that will prescribe some sort of > topical medication to at least temporarily reduce the irritation, so > that I can begin to work with the PT. So that's my story. I'd like to > hear from people about which various topicals have helped them. I > understand that these aren't long term solutions, but I just want to > be able to make it through a 45-minute session with the PT. The last > OB/GYN I went to told me that my vestibulitis will be cured by > yakking it up with a sex therapist twice a week. I was not impressed, > I understand that there is probably a strong mind/body connection > here (and in all illnesses), but I'm a bit skeptical. I would also > like to find a doctor who will talk to me about the possible > connection between oral contraceptives and vestibulitis. I've been > taking Yasmin (I have no idea what that's called in the states!) > since I got married ( a little over a year ago). > In addition, I've also started accupuncture. My practicioner is > hopeful, and is hoping that his medical partner, who has helped women > with various " women's disorders " (painful periods, infertility, > painful intercourse) will be able to take me as a patient. > Okay, that's my story. > I look forward to hearing from all/any of you. > - in Jerusalem (Israel) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Sharon, Please feel free to ask questions, vent, etc. We are here for you. You will be in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com New to Group > Hi Everyone: > > My name is Sharon and I've just been diagnosed with invasive ductal > carcinoma. It's still very early in the process for me and I'm just > trying to learn everything I can about the diagnosis and treatment > options. My husband and I go to meet with the surgeon this afternoon. > I'm 42 years old, mother of 2, and live in Virginia. I have a very > positive attitude about this, I know between God and modern medicine > I have it covered, but I still have my low moments. I just want to > beat this disease and get on with my life. I'll look forward to > reading the posts and to getting to know you all. > > Sharon > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 7, 2004 Report Share Posted July 7, 2004 Hi Sharon, Please feel free to ask questions, vent, etc. We are here for you. You will be in my prayers. Hugs nne Breast Cancer Patients Soul Mates for Life http://www.geocities.com/chucky5741/breastcancerpatients.html Check out my breast cancer ornaments at: http://www.geocities.com/chucky5741/bcornament.html also check out my other ornaments and lots of nice gifts at: http://www.cancerclub.com New to Group > Hi Everyone: > > My name is Sharon and I've just been diagnosed with invasive ductal > carcinoma. It's still very early in the process for me and I'm just > trying to learn everything I can about the diagnosis and treatment > options. My husband and I go to meet with the surgeon this afternoon. > I'm 42 years old, mother of 2, and live in Virginia. I have a very > positive attitude about this, I know between God and modern medicine > I have it covered, but I still have my low moments. I just want to > beat this disease and get on with my life. I'll look forward to > reading the posts and to getting to know you all. > > Sharon > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 hi patti welcome to the group cynthia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2005 Report Share Posted June 12, 2005 Welcome Patti Look at it this way, he will know what you are going through and will be more helpful I'm sure. And please you won't bore us. Darcy fribbywilliams wrote: Hi, I am new to the group and just wanted to introduce myself. I'm Patti and am planning to have LAP RNY on August 2. I am sooo ready to have this done and to begin the next step of my journey. I live in Chesapeake, Virgina, am married to Cory (who is also having the same surgery on June 28... lucky him... he gets to go first!) I won't bore you with a long intro but I am looking forward to getting to know the members of the board. Patti 479/468/180 surgery scheduled for August 2, 2005 We are a very active support group. If the email becomes overwhelming, please change your setting to NO EMAIL! Please stay with us! Any questions? Please contact Group Creator/Moderator Robyn@... To visit your group on the web, go to: http://groups.yahoo.com/group/GastricBypass-LOSERS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Patti, welcome and congratulations to you and hubby. I always thought it would be nice to have someone to walk down the WLS road with. Nobody understands us like we understand each other, right? Can't wait to share your journey. Toi > Hi, > > I am new to the group and just wanted to introduce myself. I'm Patti and > am planning to have LAP RNY on August 2. I am sooo ready to have this > done and to begin the next step of my journey. I live in Chesapeake, > Virgina, am married to Cory (who is also having the same surgery on June > 28... lucky him... he gets to go first!) > > I won't bore you with a long intro but I am looking forward to getting > to know the members of the board. > > Patti > 479/468/180 > surgery scheduled for August 2, 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 13, 2005 Report Share Posted June 13, 2005 Hi Patti Im new to the group too. Just wanted to say hello and tell you I will be thinking of both you and hubby as you begin this awesome journey. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Hi Pattie!!! Welcome to the group!!!!! Hugs!! > Hi, > > I am new to the group and just wanted to introduce myself. I'm Patti and > am planning to have LAP RNY on August 2. I am sooo ready to have this > done and to begin the next step of my journey. I live in Chesapeake, > Virgina, am married to Cory (who is also having the same surgery on June > 28... lucky him... he gets to go first!) > > I won't bore you with a long intro but I am looking forward to getting > to know the members of the board. > > Patti > 479/468/180 > surgery scheduled for August 2, 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2005 Report Share Posted June 14, 2005 Hi Pattie!!! Welcome to the group!!!!! Hugs!! > Hi, > > I am new to the group and just wanted to introduce myself. I'm Patti and > am planning to have LAP RNY on August 2. I am sooo ready to have this > done and to begin the next step of my journey. I live in Chesapeake, > Virgina, am married to Cory (who is also having the same surgery on June > 28... lucky him... he gets to go first!) > > I won't bore you with a long intro but I am looking forward to getting > to know the members of the board. > > Patti > 479/468/180 > surgery scheduled for August 2, 2005 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 18, 2005 Report Share Posted June 18, 2005 Welcome to the group Patty Margie fribbywilliams wrote: Hi, I am new to the group and just wanted to introduce myself. I'm Patti and am planning to have LAP RNY on August 2. I am sooo ready to have this done and to begin the next step of my journey. I live in Chesapeake, Virgina, am married to Cory (who is also having the same surgery on June 28... lucky him... he gets to go first!) I won't bore you with a long intro but I am looking forward to getting to know the members of the board. Patti 479/468/180 surgery scheduled for August 2, 2005 We are a very active support group. If the email becomes overwhelming, please change your setting to NO EMAIL! Please stay with us! Any questions? Please contact Group Creator/Moderator Robyn@... To visit your group on the web, go to: http://groups.yahoo.com/group/GastricBypass-LOSERS/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 G’day Anne, Good to hear that your husband’s PSA is so low. If you go to http://www.yananow.net/Chart-PSA.htm and page down you will find a number of stories of men who had PSA reslts between 41 and 7,000 (yes, seven thousand) 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 maryanne.cachola Sent: Saturday, 7 February 2009 6:10 PM To: ProstateCancerSupport Subject: New to group Hi everyone, here is our situation. My husband was diagnosed last July. At the time his PSA was 41 with a gleason score of 9. I am still so confused about this cancer. At the time his Urologist said it could not be cured (because the psa was so high) but could be treated. He had surgery to remove his prostate in Sept. He just finished 4 rounds of Chemo and is starting Radiation in March. Both his Oncologist and radiolgy oncologist have been very encouraging, saying they think he can beat this thing. Does anyone have any experience with such a high psa score? Thankfully after surgery and chemo his score is now .2 Thanks Anne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 > Hi everyone, here is our situation. My husband was diagnosed last > July. At the time his PSA was 41 with a gleason score of 9. I am > still so confused about this cancer. At the time his Urologist said it > could not be cured (because the psa was so high) but could be treated. > He had surgery to remove his prostate in Sept. A high-risk case, as I reckon both Anne and her DH (name?) know. Surgery is a local treatment (tx) and in this case it is unlikely that the cancer was confined to the gland. However, " debulking " by surgery is often useful. > He just finished 4 rounds of Chemo and is starting Radiation in March. Was the chemotherapy Taxotere (docetaxel)? There would have been at least one additional med. With the gland gone, and given that radiation is a " local " tx, I wonder what the intent of the radiation tx (RT) is. I know what it could be, but wonder about this particular case. > Both his Oncologist and radiolgy oncologist have been very encouraging, > saying they think he can beat this thing. Does anyone have any > experience with such a high psa score? High PSA is a risk factor, but the absolutely vital factor is the Gleason score. It is that which tells one how aggressive is the disease. How many specimens were Gleason 9? Anecdote: My case involves extensive Gleason 4,5=9 cancer, plus a small Gleason 4,4=8. PSA was relatively low. High Gleason plus low PSA is a serious risk factor. Over nearly six years, I have done better than I expected. But my anecdote is irrelevant to DH's case. Each of us is different and so is our disease. > Thankfully after surgery and chemo his score is now .2 It is good to see that the very aggressive tx has, so far, achieved good results. The uro is undoubtedly correct: DH's disease is incurable (as is mine) and must be treated as chronic. That means close monitoring and prompt attention to any problems as they arise. I recommend that the primary medic be the oncologist, as the uro, a surgeon, has done his job. BTW, has anything been said about androgen deprivation therapy (ADT) to keep the disease under control? This primarily would involve such meds as Lupron, Trelstar or Zoladex, which suppress the production of testosterone (T). T feeds PCa cells. There are side effects, so make sure DH well understands them. There are two sources of objective and reliable information that I most urgently recommend: (1) The encyclopedic website of the Prostate Cancer Research Institute (PCRI) at http://prostate-cancer.org/index.html There, one will find a vast compilation of PCa information, much of it written by some of the best and brightest medics who specialize in PCa. Also a very useful and extensive glossary. (2) _A Primer on Prostate Cancer_ 2nd ed., subtitled " The Empowered Patient's Guide " by medical oncologist and PCa specialist B. Strum, MD and PCa warrior Donna Pogliano. It is available from the PCRI website and the like, as well as Amazon (30+ five-star reviews), & Noble, and bookstores. A lifesaver, as I very well know. And last but not least, attendance at a local chapter of the PCa support and education group Us Too International can be very helpful. Chapters (and much more) can be found via their website at http://www.ustoo.com/ Regards, Steve J " Know your enemy. Get educated. But also know that it won't be easy. It will be confusing, overwhelming and depressing. That is the nature of cancer and thus the very educational process as you regain control. " -- Young, PCa Mentor Phoenix 5 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 > Hi everyone, here is our situation. My husband was diagnosed > last July. At the time his PSA was 41 with a gleason score of > 9. I am still so confused about this cancer. At the time his > Urologist said it could not be cured (because the psa was so > high) but could be treated. He had surgery to remove his > prostate in Sept. > > He just finished 4 rounds of Chemo and is starting Radiation > in March. Both his Oncologist and radiolgy oncologist have > been very encouraging, saying they think he can beat this > thing. Does anyone have any experience with such a high psa > score? Thankfully after surgery and chemo his score is now .2 Hello anne, I'm not an expert, but I've followed this or other prostate cancer groups since my own diagnosis and (so far successful) treatment five and a half years ago. Based on that experience, my inexpert impression of what has happened is that, while your husband's case is serious and probably incurable, his doctors have taken a very aggressive approach to treating him. They appear to be doing everything possible. That can be a very good thing. Not all doctors treat cases as aggressively. In my personal view however, especially if the patient is younger or stronger, aggressive treatment can make a real difference in longevity. If your husband responds well to the treatments, he may be alive for many years to come. You've seen from Steve Jordan's posting that he is still alive almost six years after his own Gleason 9 diagnosis. His PSA and cancer are still under control and, if I remember correctly, he still has no symptoms. There are many other men who are also still alive. Your husband's doctors know much more about this than I do and their advice is worth more than mine, but for whatever it's worth, here is what I think I would do in his situation. 1. Educate myself about the disease. There are many good books and websites. In addition to those already mentioned, a very simple but useful website in my view is http://www.prostatevideos.com/ There are videos there by Dr. Gerald Chodak in Chicago describing many aspects of PCa and its treatment. 2. Continue aggressive treatment. The doctors will probably prescribe androgen deprivation therapy (ADT) if they have not already. It has undesirable side effects, but they're manageable and a doctor can help with them. 3. Get information about diet and exercise that will help. Diet and exercise cannot cure cancer, but there is evidence that a healthy, low fat diet, possibly rich in certain specific foods and supplements (there are lots of conflicting opinions about that), and a good exercise regimen can slow the growth of the cancer, counteract side effects of treatment, and improve general health. If your husband happens to be out of shape and overweight, this is a good time to work on that. It is a way for him to participate in fighting his disease. I wish you the best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 > Hi everyone, here is our situation. My husband was diagnosed > last July. At the time his PSA was 41 with a gleason score of > 9. I am still so confused about this cancer. At the time his > Urologist said it could not be cured (because the psa was so > high) but could be treated. He had surgery to remove his > prostate in Sept. > > He just finished 4 rounds of Chemo and is starting Radiation > in March. Both his Oncologist and radiolgy oncologist have > been very encouraging, saying they think he can beat this > thing. Does anyone have any experience with such a high psa > score? Thankfully after surgery and chemo his score is now .2 Hello anne, I'm not an expert, but I've followed this or other prostate cancer groups since my own diagnosis and (so far successful) treatment five and a half years ago. Based on that experience, my inexpert impression of what has happened is that, while your husband's case is serious and probably incurable, his doctors have taken a very aggressive approach to treating him. They appear to be doing everything possible. That can be a very good thing. Not all doctors treat cases as aggressively. In my personal view however, especially if the patient is younger or stronger, aggressive treatment can make a real difference in longevity. If your husband responds well to the treatments, he may be alive for many years to come. You've seen from Steve Jordan's posting that he is still alive almost six years after his own Gleason 9 diagnosis. His PSA and cancer are still under control and, if I remember correctly, he still has no symptoms. There are many other men who are also still alive. Your husband's doctors know much more about this than I do and their advice is worth more than mine, but for whatever it's worth, here is what I think I would do in his situation. 1. Educate myself about the disease. There are many good books and websites. In addition to those already mentioned, a very simple but useful website in my view is http://www.prostatevideos.com/ There are videos there by Dr. Gerald Chodak in Chicago describing many aspects of PCa and its treatment. 2. Continue aggressive treatment. The doctors will probably prescribe androgen deprivation therapy (ADT) if they have not already. It has undesirable side effects, but they're manageable and a doctor can help with them. 3. Get information about diet and exercise that will help. Diet and exercise cannot cure cancer, but there is evidence that a healthy, low fat diet, possibly rich in certain specific foods and supplements (there are lots of conflicting opinions about that), and a good exercise regimen can slow the growth of the cancer, counteract side effects of treatment, and improve general health. If your husband happens to be out of shape and overweight, this is a good time to work on that. It is a way for him to participate in fighting his disease. I wish you the best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 > Hi everyone, here is our situation. My husband was diagnosed > last July. At the time his PSA was 41 with a gleason score of > 9. I am still so confused about this cancer. At the time his > Urologist said it could not be cured (because the psa was so > high) but could be treated. He had surgery to remove his > prostate in Sept. > > He just finished 4 rounds of Chemo and is starting Radiation > in March. Both his Oncologist and radiolgy oncologist have > been very encouraging, saying they think he can beat this > thing. Does anyone have any experience with such a high psa > score? Thankfully after surgery and chemo his score is now .2 Hello anne, I'm not an expert, but I've followed this or other prostate cancer groups since my own diagnosis and (so far successful) treatment five and a half years ago. Based on that experience, my inexpert impression of what has happened is that, while your husband's case is serious and probably incurable, his doctors have taken a very aggressive approach to treating him. They appear to be doing everything possible. That can be a very good thing. Not all doctors treat cases as aggressively. In my personal view however, especially if the patient is younger or stronger, aggressive treatment can make a real difference in longevity. If your husband responds well to the treatments, he may be alive for many years to come. You've seen from Steve Jordan's posting that he is still alive almost six years after his own Gleason 9 diagnosis. His PSA and cancer are still under control and, if I remember correctly, he still has no symptoms. There are many other men who are also still alive. Your husband's doctors know much more about this than I do and their advice is worth more than mine, but for whatever it's worth, here is what I think I would do in his situation. 1. Educate myself about the disease. There are many good books and websites. In addition to those already mentioned, a very simple but useful website in my view is http://www.prostatevideos.com/ There are videos there by Dr. Gerald Chodak in Chicago describing many aspects of PCa and its treatment. 2. Continue aggressive treatment. The doctors will probably prescribe androgen deprivation therapy (ADT) if they have not already. It has undesirable side effects, but they're manageable and a doctor can help with them. 3. Get information about diet and exercise that will help. Diet and exercise cannot cure cancer, but there is evidence that a healthy, low fat diet, possibly rich in certain specific foods and supplements (there are lots of conflicting opinions about that), and a good exercise regimen can slow the growth of the cancer, counteract side effects of treatment, and improve general health. If your husband happens to be out of shape and overweight, this is a good time to work on that. It is a way for him to participate in fighting his disease. I wish you the best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Alan. Frequently we see or hear someone deprecating the internet mailing lists with remarks about why anyone would want to listen to advice found on the internet. I wish I could refute them using your post in reply to anne. Excellent indeed! Great job. " il faut d'abord durer " Hemingway Re: New to group > > >> Hi everyone, here is our situation. My husband was diagnosed >> last July. At the time his PSA was 41 with a gleason score of >> 9. I am still so confused about this cancer. At the time his >> Urologist said it could not be cured (because the psa was so >> high) but could be treated. He had surgery to remove his >> prostate in Sept. >> >> He just finished 4 rounds of Chemo and is starting Radiation >> in March. Both his Oncologist and radiolgy oncologist have >> been very encouraging, saying they think he can beat this >> thing. Does anyone have any experience with such a high psa >> score? Thankfully after surgery and chemo his score is now .2 > > Hello anne, > > I'm not an expert, but I've followed this or other prostate > cancer groups since my own diagnosis and (so far successful) > treatment five and a half years ago. Based on that experience, > my inexpert impression of what has happened is that, while your > husband's case is serious and probably incurable, his doctors > have taken a very aggressive approach to treating him. They > appear to be doing everything possible. > > That can be a very good thing. Not all doctors treat cases as > aggressively. In my personal view however, especially if the > patient is younger or stronger, aggressive treatment can make a > real difference in longevity. If your husband responds well to > the treatments, he may be alive for many years to come. > > You've seen from Steve Jordan's posting that he is still alive > almost six years after his own Gleason 9 diagnosis. His PSA and > cancer are still under control and, if I remember correctly, he > still has no symptoms. > > There are many other men who are also still alive. > > Your husband's doctors know much more about this than I do and > their advice is worth more than mine, but for whatever it's > worth, here is what I think I would do in his situation. > > 1. Educate myself about the disease. > > There are many good books and websites. > > In addition to those already mentioned, a very simple but > useful website in my view is http://www.prostatevideos.com/ > There are videos there by Dr. Gerald Chodak in Chicago > describing many aspects of PCa and its treatment. > > 2. Continue aggressive treatment. > > The doctors will probably prescribe androgen deprivation > therapy (ADT) if they have not already. It has undesirable > side effects, but they're manageable and a doctor can help > with them. > > 3. Get information about diet and exercise that will help. > > Diet and exercise cannot cure cancer, but there is evidence > that a healthy, low fat diet, possibly rich in certain > specific foods and supplements (there are lots of conflicting > opinions about that), and a good exercise regimen can slow > the growth of the cancer, counteract side effects of > treatment, and improve general health. > > If your husband happens to be out of shape and overweight, > this is a good time to work on that. It is a way for him to > participate in fighting his disease. > > I wish you the best of luck. > > Alan > > > > > > > ------------------------------------ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Thanks to everyone for sharing your experience with me, obviously we have alot to learn. Right now we are taking it as it comes. It looks like this will be a long journey, I think its time to dive in and learn all we can. Thanks again, Anne and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Thanks to everyone for sharing your experience with me, obviously we have alot to learn. Right now we are taking it as it comes. It looks like this will be a long journey, I think its time to dive in and learn all we can. Thanks again, Anne and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 7, 2009 Report Share Posted February 7, 2009 Thanks to everyone for sharing your experience with me, obviously we have alot to learn. Right now we are taking it as it comes. It looks like this will be a long journey, I think its time to dive in and learn all we can. Thanks again, Anne and Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 23, 2011 Report Share Posted February 23, 2011 Hello, This is Aryana. Not feeling well today, so will only write a little bit. Was originally on low dose of xanax for throat tightness, since 1993, and did fine with it into tolerance in 2003, and didn't know what it was. Went back on it, and went into tolerance in 2006, and did a Valium taper, which was not correct. After 10 months of being off (which took one year), I had such a severe set-back from hormone therapy, that I wound up in the hospital and was put on 1.5mg Klonipin and had a normal life for almost 2 years. Went into tolerance withdrawl around May, 2010, and have been on a Valium taper since August , 2010. Started at 30mg V, and now at 10.5mg V, and having to slow it down. Very intense symptoms and would like support. I don't have good computer skills, have been homebound, with severe d/r, agoraphobia, throat tightness, etc. Have had some good days. I have been a Doctor of Naturopathy for over 20 years. I miss my work and my regular life. Thanks for listening. Aryana Quote Link to comment Share on other sites More sharing options...
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