Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Welcome Anne Marie. Glad you finally decided to post! Amy Swinderman Live aloha! __________________________________ Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. http://mobile.yahoo.com/learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Welcome Anne Marie. Glad you finally decided to post! Amy Swinderman Live aloha! __________________________________ Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. http://mobile.yahoo.com/learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2005 Report Share Posted May 16, 2005 Welcome Anne Marie. Glad you finally decided to post! Amy Swinderman Live aloha! __________________________________ Yahoo! Mail Mobile Take Yahoo! Mail with you! Check email on your mobile phone. http://mobile.yahoo.com/learn/mail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Hello Anne Marie, Welcome to the group. We are a diverse group of people who share our lives with each other. For some of us this is the only place where we find acceptance for who and what we are. Having this type of diagnosis is difficult because most of us look healthy, but few understand the unrelenting pain we go thru day in and day out. This is where we can let our hair down, so to speak. I look forward to getting to know you better. Kathleen in N.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2005 Report Share Posted May 17, 2005 Hello Anne Marie, Welcome to the group. We are a diverse group of people who share our lives with each other. For some of us this is the only place where we find acceptance for who and what we are. Having this type of diagnosis is difficult because most of us look healthy, but few understand the unrelenting pain we go thru day in and day out. This is where we can let our hair down, so to speak. I look forward to getting to know you better. Kathleen in N.C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 -Judith, The journal is an excellent idea! I have worked with several AS students and they can be a joy as well as a frustration. What is 's particular interest? If you want to reply off board I'll try to work this foggy brain and help you come up with some ideas. Do share the " spoons " story with him! The link was posted here a few days back. Maybe someone can add it to the links on this board or repost it for you. No need for apologies. I often Lurk when I'm not able to participate. Hugs, Deb in Ohio -- In Fibromyalgia_Support_Group , " Judith " <judithhealth@g...> wrote: > I apologize for lurking so much but things have been hectic at my > house lately. I wanted to introduce myself to you. > > My name is Judith. I am 50 years old and the single parent of a 21 > year old son (he will be 21 on the 1st). has AS which > is a high functioning form of autism. was diagnosed with > fibromyalgia in February of this year. We currently live in Port > Orchard, Washington but will be moving to Hawthorne, Nevada in > October (first week). > > I am trying to learn as much as I can about fibro so I can help my > son. So far what i have been doing is encouraging him to make a > journal/log about how he feels and what he was doing at the time and > what pain level he is at when it happens. I am very open to any and > all suggestions. > > I look forward to making new friends here and learning lots about > fibro. > > hugs........judith (aka ladybug) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2005 Report Share Posted May 27, 2005 -Judith, The journal is an excellent idea! I have worked with several AS students and they can be a joy as well as a frustration. What is 's particular interest? If you want to reply off board I'll try to work this foggy brain and help you come up with some ideas. Do share the " spoons " story with him! The link was posted here a few days back. Maybe someone can add it to the links on this board or repost it for you. No need for apologies. I often Lurk when I'm not able to participate. Hugs, Deb in Ohio -- In Fibromyalgia_Support_Group , " Judith " <judithhealth@g...> wrote: > I apologize for lurking so much but things have been hectic at my > house lately. I wanted to introduce myself to you. > > My name is Judith. I am 50 years old and the single parent of a 21 > year old son (he will be 21 on the 1st). has AS which > is a high functioning form of autism. was diagnosed with > fibromyalgia in February of this year. We currently live in Port > Orchard, Washington but will be moving to Hawthorne, Nevada in > October (first week). > > I am trying to learn as much as I can about fibro so I can help my > son. So far what i have been doing is encouraging him to make a > journal/log about how he feels and what he was doing at the time and > what pain level he is at when it happens. I am very open to any and > all suggestions. > > I look forward to making new friends here and learning lots about > fibro. > > hugs........judith (aka ladybug) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Welcome Judith! WOW - I wish i had a family member of friend who would go to the lengths of actually signing onto this kind of site to find out more about my illness! God bless you!!!!!!!!!! You will learn alot from this site!! Aloooooooha! Jaana Moderator / Member De-Bouncerator / humble Group servant Introduction I apologize for lurking so much but things have been hectic at my house lately. I wanted to introduce myself to you.My name is Judith. I am 50 years old and the single parent of a 21 year old son (he will be 21 on the 1st). has AS which is a high functioning form of autism. was diagnosed with fibromyalgia in February of this year. We currently live in Port Orchard, Washington but will be moving to Hawthorne, Nevada in October (first week).I am trying to learn as much as I can about fibro so I can help my son. So far what i have been doing is encouraging him to make a journal/log about how he feels and what he was doing at the time and what pain level he is at when it happens. I am very open to any and all suggestions.I look forward to making new friends here and learning lots about fibro.hugs........judith (aka ladybug) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Welcome Judith! WOW - I wish i had a family member of friend who would go to the lengths of actually signing onto this kind of site to find out more about my illness! God bless you!!!!!!!!!! You will learn alot from this site!! Aloooooooha! Jaana Moderator / Member De-Bouncerator / humble Group servant Introduction I apologize for lurking so much but things have been hectic at my house lately. I wanted to introduce myself to you.My name is Judith. I am 50 years old and the single parent of a 21 year old son (he will be 21 on the 1st). has AS which is a high functioning form of autism. was diagnosed with fibromyalgia in February of this year. We currently live in Port Orchard, Washington but will be moving to Hawthorne, Nevada in October (first week).I am trying to learn as much as I can about fibro so I can help my son. So far what i have been doing is encouraging him to make a journal/log about how he feels and what he was doing at the time and what pain level he is at when it happens. I am very open to any and all suggestions.I look forward to making new friends here and learning lots about fibro.hugs........judith (aka ladybug) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2005 Report Share Posted May 28, 2005 Welcome Judith! WOW - I wish i had a family member of friend who would go to the lengths of actually signing onto this kind of site to find out more about my illness! God bless you!!!!!!!!!! You will learn alot from this site!! Aloooooooha! Jaana Moderator / Member De-Bouncerator / humble Group servant Introduction I apologize for lurking so much but things have been hectic at my house lately. I wanted to introduce myself to you.My name is Judith. I am 50 years old and the single parent of a 21 year old son (he will be 21 on the 1st). has AS which is a high functioning form of autism. was diagnosed with fibromyalgia in February of this year. We currently live in Port Orchard, Washington but will be moving to Hawthorne, Nevada in October (first week).I am trying to learn as much as I can about fibro so I can help my son. So far what i have been doing is encouraging him to make a journal/log about how he feels and what he was doing at the time and what pain level he is at when it happens. I am very open to any and all suggestions.I look forward to making new friends here and learning lots about fibro.hugs........judith (aka ladybug) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 15, 2008 Report Share Posted June 15, 2008 hi, my name is kellie and i have recently been iagnosed with ms. i know this may be a bit of a contradiction but i do have trouble with typing so i have given up on using caps, please forgive me for this in advance, will explain more later. i was diagnosed with my ms tentatively the 7th of march after my first mri. i was given a confirmed diagnosis the first part of may, after they did everything i think they possibly could to me. i have been told that this has progressed faster than normal and my neuro is kind of surprised with my symptoms. I have had numerous problems so far and they do not seem to be getting any better. I am going to be 32 this month, I have 3 kids (girl 14, boy 11, girl 6) and 3 step daughters (19, 17, and 14). the 6 yr old is the only one living with my husband and i right now though. I was a substitute teacher for the school district we live in, secretary of my daughters pto, co-leader for her girl scout troop and assisted with many classroom parties and school functions. all that was until ms took a massive hold in mid feb. it all started with me having problems with my balance and i thought it was due to an ear infection i had previously. it seemed to get worse and not better over time so i went into my reg dr. he had an mri done and said he believed it to be ms. from there h sent me to a neuro and i had more bloodwork done at one time than i think i have had done in my entire life(and that is a lot!!), another mri and lumbar puncture. he confirmed the diagnosis in may and we did the iiv steriods. this did nothing to help and i hated the side effects so we will not be doing that again. i have been put on home health for pt and ot and i dont see much improvement with that either. i am unable to drive now because i am not able to stay in one lane. i have tremors pretty bad in my arms/hands and have difficulty walking. i also have been having severe headaches and pain in my legs. i have started the drug avonex and am stair stepping up to the reg dose. i have only had 2 injections so far and get my 3rd today but am not liking the side effects from it either. apprently i fall into the 4 percent of people who lost their hair in the drug trials and no one thought to tell me of this side effect until i called asking if this was normal. i am also experiencing all the flu like symptoms and fever and just about all the side effects they say are a possibility with this drug. it may be due to my weight too though since i am not a very big person, i am 5 ft 2 in and weigh about 120, i was weighing about 90 lbs about 3 months ago also. to add to the mix i also have 3 dogs, 2 cats of my own and 7 kittens that were homeless se i am trying to find them homes. my dogs are all different kids, the smallest and youngest is a cute little girl named coco, she is half min pincher and half toy pom. she looks like a chihuahua with a longer snout and curled tail. the next one is a 5 yr old shi tzi, we just took him in from my nurse who couldnt keep him any longer. the biggest baby is my english mastiff, duchess. she was a yr old on feb 16th and idesperately miss getting to spend time with her!! i was the primary care taker for all our critters until ms took hold, now i am unable to deal with the mastiff since she is so big and still thinks of herself as a small lap dog lol. i look forward to hearing about everyones experiences and learning a lot from the " seasoned " msers. thanks for letting me join!! kellie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 16, 2008 Report Share Posted June 16, 2008 Thank God that you at least follow email etiquette!  Many people suffering from MS are unable to navigate a keyboard much less worry about using the ALLCAPS BUTTON on your keyboard, then to most people don't know what correct email etiquette is! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 20, 2008 Report Share Posted June 20, 2008 HI MARK, I USE IT ALOT, CAN READ IT BETTER? LOL! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 (snip) > My urologist is recommending a full body bone scan ASAP. I am > considering getting a second opinion on the biopsy first. Is this a > good idea? I would appreciate a recommendation for a pathology group > that specializes in prostate biopsy. Here is a list of well-respected labs and individuals: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162 Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839 In civilized jurisdictions, tissue specimens are the property of the patient; not the lab and not the medic. Sometimes it is necessary to be firm. Last I heard, the cost is ~ $350, more if further testing is ordered. As a second opinion, it is covered by insurance and Medicare. > I retired to NE TN but am spending the winter in S. FL. If I opt for > surgery, I would prefer to have it done in S. FL . I would also > appreciate any information on an experienced surgeon in the area. Some can be found via this portal on the encyclopedic website of the Prostate Cancer Research Institute (PCRI): http://prostate-cancer.org/resource/find-a-physician.html Please also see the section, Newly Diagnosed. I heartily recommend _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. Lastly, I recommend maintaining a file of every record generated through this case, especially test results. Patients have a right to such information and it could be absolutely priceless. Please let us know how it goes. Regards, Steve J " Patients with high Gleason score prostate cancer often do not secrete very much PSA, and often their tumors make other biologic products such as CGA (chromogranin A), NSE (neuron specific enolase), CEA (carcino-embryonic antigen) and PAP (prostatic acid phosphatase). Before any treatment is initiated it is important to obtain baseline values of these markers so that if any are abnormally elevated they can be used as parameters of successful treatment. " -- B. Strum, MD Medical Oncologist PCa Specialist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 (snip) > My urologist is recommending a full body bone scan ASAP. I am > considering getting a second opinion on the biopsy first. Is this a > good idea? I would appreciate a recommendation for a pathology group > that specializes in prostate biopsy. Here is a list of well-respected labs and individuals: Bostwick Laboratories [800] 214-6628 Dianon Laboratories [800] 328-2666 (select 5 for client services) Jon Epstein (Hopkins) [410] 955-5043 or [410] 955-2162 Grignon (Michigan) [313] 745-2520 Jon Oppenheimer (Tennessee) [888] 868-7522 UroCor, Inc. [800] 411-1839 In civilized jurisdictions, tissue specimens are the property of the patient; not the lab and not the medic. Sometimes it is necessary to be firm. Last I heard, the cost is ~ $350, more if further testing is ordered. As a second opinion, it is covered by insurance and Medicare. > I retired to NE TN but am spending the winter in S. FL. If I opt for > surgery, I would prefer to have it done in S. FL . I would also > appreciate any information on an experienced surgeon in the area. Some can be found via this portal on the encyclopedic website of the Prostate Cancer Research Institute (PCRI): http://prostate-cancer.org/resource/find-a-physician.html Please also see the section, Newly Diagnosed. I heartily recommend _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. Lastly, I recommend maintaining a file of every record generated through this case, especially test results. Patients have a right to such information and it could be absolutely priceless. Please let us know how it goes. Regards, Steve J " Patients with high Gleason score prostate cancer often do not secrete very much PSA, and often their tumors make other biologic products such as CGA (chromogranin A), NSE (neuron specific enolase), CEA (carcino-embryonic antigen) and PAP (prostatic acid phosphatase). Before any treatment is initiated it is important to obtain baseline values of these markers so that if any are abnormally elevated they can be used as parameters of successful treatment. " -- B. Strum, MD Medical Oncologist PCa Specialist Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 There is an MD that posts on this site from FL. Ken, maybe you and he can visit. On the bone scan recommendation by your Uro., that sounds like a very good call on his part; especially if it turns out you have something of an aggressive nature. Sincerely, Mick -- Abilene, TX > > Hello. > > Just joined and would like to introduce myself. > > I am 64 and was informed Wed. that I have " aggressive " prostate > cancer. I was given two Gleason scores, 3+5 and 4+4, both from the > left side. My most recent PSA, Nov. '08, was 6.3 . Previous PSA's > were 4.5 in Jan. '08, 5.9 in Nov. '07 and 4.8 in June '07. The 5.9 was > considered inaccurate because I had ridden a bicycle the day before > the test. > > My urologist is recommending a full body bone scan ASAP. I am > considering getting a second opinion on the biopsy first. Is this a > good idea? I would appreciate a recommendation for a pathology group > that specializes in prostate biopsy. > > I retired to NE TN but am spending the winter in S. FL. If I opt for > surgery, I would prefer to have it done in S. FL . I would also > appreciate any information on an experienced surgeon in the area. > > Thanks for any help. > > Ken Bradshaw > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 4, 2009 Report Share Posted January 4, 2009 There is an MD that posts on this site from FL. Ken, maybe you and he can visit. On the bone scan recommendation by your Uro., that sounds like a very good call on his part; especially if it turns out you have something of an aggressive nature. Sincerely, Mick -- Abilene, TX > > Hello. > > Just joined and would like to introduce myself. > > I am 64 and was informed Wed. that I have " aggressive " prostate > cancer. I was given two Gleason scores, 3+5 and 4+4, both from the > left side. My most recent PSA, Nov. '08, was 6.3 . Previous PSA's > were 4.5 in Jan. '08, 5.9 in Nov. '07 and 4.8 in June '07. The 5.9 was > considered inaccurate because I had ridden a bicycle the day before > the test. > > My urologist is recommending a full body bone scan ASAP. I am > considering getting a second opinion on the biopsy first. Is this a > good idea? I would appreciate a recommendation for a pathology group > that specializes in prostate biopsy. > > I retired to NE TN but am spending the winter in S. FL. If I opt for > surgery, I would prefer to have it done in S. FL . I would also > appreciate any information on an experienced surgeon in the area. > > Thanks for any help. > > Ken Bradshaw > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 On January 5, evidently referring to (A Primer on Prostate Cancer, Larry S wrote: > " The Empowered patient's Guide " was written in 2005.†Much has changed > since then. Not the fundamentals. Regards, Steve J Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2009 Report Share Posted January 5, 2009 > I am 64 and was informed Wed. that I have " aggressive " > prostate cancer. I was given two Gleason scores, 3+5 and 4+4, > both from the left side. My most recent PSA, Nov. '08, was > 6.3. Previous PSA's were 4.5 in Jan. '08, 5.9 in Nov. '07 and > 4.8 in June '07. The 5.9 was considered inaccurate because I > had ridden a bicycle the day before the test. .... > My urologist is recommending a full body bone scan ASAP. I am > considering getting a second opinion on the biopsy first. Is > this a good idea? I would appreciate a recommendation for a > pathology group that specializes in prostate biopsy. .... Hello Ken, Sorry to hear of your diagnosis. On the question about biopsies, I think Steve Jordan has already given you his standard and very cogent advice. Yes, get a second opinion. I'm especially confused about your sentence that reads " 3+5 and 4+4 " . I'm having trouble understanding what the pathologist meant by that. He seems to be saying that either the predominant pathology was Gleason 3 with secondary Gleason 5, or else Gleason 3 and 5 were both insignficant and both the primary and secondary pathology were Gleason 4. Huh? Did the urologist provide any interpretation of that? Does it mean that there were two cancerous samples on the left side, one of which was 3+5 and one 4+4? While a second opinion on the biopsy is always a good idea, it seems to me to be particularly important in your case where the report is somewhat ambiguous. [bear in mind though that I am not a doctor and no kind of expert in any of this. Perhaps the " 3+5 and 4+4 " report is very common and I just don't happen to have heard of one before.] On the specific issue of the bone scan, Dr. Gerald Chodak has produced a little video giving his opinion of it. I think it's worth watching: http://www.prostatevideos.com/prostate-cancer/grading-and-staging-of-prostate-ca\ ncer/bone-scan-for-assessing-cancer-spreading-to-the-bones/ or: http://tinyurl.com/8rlmoa Dr. Chodak claims that, for men with a PSA under 20, a bone scan will produce, on average, 3 true positives and 130 false positives out of every 1,000 patients. He doesn't think bone scans are a good idea for men who are facing prostate cancer for the first time (i.e., not a recurrence) with low PSA scores. I suggest asking your doctor: 1. Does he know the statistics on true and false positives for men with your PSA? 2. If the scan is positive, and given that the vast majority of positives on men with low PSA are false, how will he determine whether the suspect area in the scan is actually cancer or not? Will he then have to do a bone biopsy? Is there another way? Finally, here is some general advice from a non-specialist (me) whose opinions are probably worth what you're paying for them. If your combined Gleason score is 8, then your cancer is potentially aggressive and should be treated. I believe that a Gleason 8 cancer is likely to kill you sometime in the next 8-20 years if left untreated. At age 64, you might reasonably expect to live long enough for that to happen. With the current treatment options, the best chance at defeating cancer is always the first chance. A patient will typically get surgery or radiation. If it fully succeeds, he will be free of PCa for the rest of his life. If it fails, he cannot do the surgery or radiation again, though with surgery he can try radiation if the surgery fails [there is a dispute about whether that is an advantage for surgery, or whether a patient who fails surgery and then succeeds with radiation should have had radiation the first time.] I won't claim to know what the best treatment is. In my inexpert opinion, there is no best treatment. Surgery and a number of different forms of radiation have comparable outcomes - but with different side effects. However I do know that different doctors have different success rates. Therefore, since you only get one first shot at the cancer, you want that to be the very best shot you can take, i.e., with the best surgeon or radiation oncologist you can find. If you choose surgery, get a guy who does 50, 100, or more prostatectomies every year, not a guy who mainly treats incontinence and urinary infections and does a prostatectomy every two or three months. If you choose radiation, get a radiation oncologist who does lots of prostates, not one who does breasts, hips, ankles, elbows, brains, and oh yes, prostates. So, shop around. Seek advice from other patients (as you are doing here) and from other docs and nurses that you might know. Find out who has a good reputation. Get a consultation with that doctor. Form your own opinion of how good a doctor he or she is. Be sure to consult with at least one surgeon and one radiation oncologist. Best of luck. Alan Quote Link to comment Share on other sites More sharing options...
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