Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 ...Welcome again from another . The NSIP in my signature line means Non-Specific Interstitial Pneumonitis!!! I am also on Predisone and have gone from 40 to 12.5mg in the 28months since diagnosis. My Dr. hopes to keep me at 10mg..that's his idea...I'm hoping to get away from it!!! I've have been stable all this time so I'm not really complaining except for the miserable side-effects. Z fibriotic NSIP/05 Z fibriotic NSIP/o5/PA And “mild” PH/10/07 and Reynaud’s too!! Potter, reader,carousel lover and MomMom to Darah “I’m gonna be iron like a lion in Zion” Bob Marley lsmith7892006 wrote: I am glad I found this group and hope to get to know you all better. I hope to learn how to be better. I have already had a year to adjust to this monster that has come to inhabit me and am finally starting to fight back. No virus found in this incoming message. Checked by AVG Free Edition. Version: 7.5.516 / Virus Database: 269.17.13/1205 - Release Date: 12/31/2007 3:32 PM Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 1, 2008 Report Share Posted January 1, 2008 Hello , Welcome to the Board..you sound as though you're having a rather rough time of it. I'm fairly newly diagnosed too & found the whole process very frustrating & time consuming. As a formerly indecently healthy individual it was very disconcerting. You will find lots of support here & distraction from time to time. Regards, in Australia (aka in OZ ) IPF: Fibrotic NSIP/ UIP???? Reynauds' May 2007 >> I am glad I found this group and hope to get to know you all better. I > hope to learn how to be better. I have already had a year to adjust to > this monster that has come to inhabit me and am finally starting to > fight back.> > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Dave wrote: > I am not sure why the urologist didn't refer me to an > oncologist. .... > Problem is I wont go back for another month (to see if still > need catheter) and then not til February for another hormone > shot so don't know when I will be able to raise that issue. .... As I understand it, you have received the standard first line drug treatment. An oncologist would do the same thing the urologist did. Seeing an oncologist will be more important if and when the standard treatment stops working. So you've got time to sort all that out. How much time is hard to say. If I remember correctly, hormone therapy works for an average of around 18 months - more in easy cases, less in very advanced cases. You're probably in between, though it also varies from person to person for unknown reasons. > All my treatment is being done through the VA and I can't > afford to see another doctor. I haven't been able to work for > over a month now and have no reserves. I guess I will just have > to trust that the VA doctors know what they are doing. .... People have different attitudes to serious problems like cancer. Some want to know everything about it. Some don't want to know anything. Some who don't want to know are lucky enough to have wives or children who are willing to learn everything on their behalf. If you do learn, I think you'll get better treatment. You may not have access to the best specialists at your VA center. They may not have a medical oncologist specializing in prostate cancer in Spain. In that case, I think the best thing to do is to try to find the best doctor you can within the VA system. It might be an oncologist. It might be a urologist. And then study the subject yourself. Get a book or two on prostate cancer that's written for patients ( Strum's book comes to mind) and read it. Also read the information on the www.yananow.org website, the www.cancer.gov website, postings in the advancedprostatecancer newsgroup, and whatever else you can. Write your ideas and questions down. You won't learn enough to become a doctor, but you can learn what treatments have been tried after hormone therapy, what results have been achieved, and what the side effects are. Then when you go see your doctor, tell him what you've learned, ask him your questions, work up a plan with him for what to do if and when the PSA starts to rise again, and work with him to get good treatment. If you can find a guy who's heart is in the right place, even if he's not real experienced with this stuff, I think you can get good treatment. Best of luck. Alan Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2010 Report Share Posted May 16, 2010 Everyone has been helping in letting me know about prostate biopsy. Now what does the doc do about an enlarged prostate. One of the nurses during the test says that maybe surgery to cut some of it out or something. If that is the case then can't he do both at the same time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 16, 2010 Report Share Posted May 16, 2010 I'm sorry I can't help you with the enlarged question, as I've not had any enlargement. Sorry...Jim...Waukesha In our group though, a treatment called something GREEN was discussed and several had had that..before the surgery. To: ProstateCancerSupport Sent: Sun, May 16, 2010 6:32:55 PMSubject: Thanks Everyone has been helping in letting me know about prostate biopsy. Now what does the doc do about an enlarged prostate. One of the nurses during the test says that maybe surgery to cut some of it out or something. If that is the case then can't he do both at the same time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2010 Report Share Posted May 19, 2010 CHARLES...I have that book EXCELLENT..and also have a PATIENT RESOURCE CANCER GUIDE which is FREE from our oncology dept. The website is patientresource.net or MycancerAdvisor.com. VERY INFORMATIVE..and I also took my wife. She did lots of research for me..and sure helps sorting all the options out. She also knew that LEAKAGE..NO BAG..and least amount of recovery time were my major issues..and thing we opted for the best treatment...hormone/external radiation. Flashes..and no libido..easily manageable for me.. I'm 72....and had a psa of 16 and Gleason of 7. JIM, WAUKESHA! To: ProstateCancerSupport Sent: Mon, May 17, 2010 10:24:54 AMSubject: Re: Thanks Ricko --I suggest that you get a copy of:"The Prostate Book: The Complete Guide to Overcoming Prostate Cancer, Prostatitis, and BPH" -- Dr. ScardinoIt's not very expensive, it's not difficult to read, and it goes into more detail than any literature your doctor will give you. Scardino is the chairman of Urology at MSKCC -- he knows what he's talking about.It's 4 years old, but it should answer a lot of your questions about what treatments are available.I usually had my wife with me, when I visited the urologist. That way, we had two pairs of ears to listen, and two mouths to ask questions. And we went in with a written list of questions.Maybe I was "the patient from hell", but I was pretty well informed before surgery.>> Everyone has been helping in letting me know about prostate biopsy. > > Now what does the doc do about an enlarged prostate. One of the nurses during the test says that maybe surgery to cut some of it out or something. If that is the case then can't he do both at the same time.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2010 Report Share Posted May 19, 2010 CHARLES...I have that book EXCELLENT..and also have a PATIENT RESOURCE CANCER GUIDE which is FREE from our oncology dept. The website is patientresource.net or MycancerAdvisor.com. VERY INFORMATIVE..and I also took my wife. She did lots of research for me..and sure helps sorting all the options out. She also knew that LEAKAGE..NO BAG..and least amount of recovery time were my major issues..and thing we opted for the best treatment...hormone/external radiation. Flashes..and no libido..easily manageable for me.. I'm 72....and had a psa of 16 and Gleason of 7. JIM, WAUKESHA! To: ProstateCancerSupport Sent: Mon, May 17, 2010 10:24:54 AMSubject: Re: Thanks Ricko --I suggest that you get a copy of:"The Prostate Book: The Complete Guide to Overcoming Prostate Cancer, Prostatitis, and BPH" -- Dr. ScardinoIt's not very expensive, it's not difficult to read, and it goes into more detail than any literature your doctor will give you. Scardino is the chairman of Urology at MSKCC -- he knows what he's talking about.It's 4 years old, but it should answer a lot of your questions about what treatments are available.I usually had my wife with me, when I visited the urologist. That way, we had two pairs of ears to listen, and two mouths to ask questions. And we went in with a written list of questions.Maybe I was "the patient from hell", but I was pretty well informed before surgery.>> Everyone has been helping in letting me know about prostate biopsy. > > Now what does the doc do about an enlarged prostate. One of the nurses during the test says that maybe surgery to cut some of it out or something. If that is the case then can't he do both at the same time.> Quote Link to comment Share on other sites More sharing options...
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