I was diagnosed mPC Apr2017, widespread bone mets, no lymph nodes or organs. Lupron, Chemo, then an Orchiectomy in Sept2017 to get off Lupron. Rescanned October, and all looked better, PSA 1.0. Follow up in Feb2018, PSA 6.71, now mCRPC, and been on Zytiga for 3 weeks. Offered a clinical trial at UT/Southwestern Dallas but rejected due to PSA fluctuation during chemo. Talked to my MO about getting a second opinion.
My MO said please, try MD Anderson, if any hospital might have a clinical you might qualify for, it would be them. I reached out to a doctor that had contacted me in the beginning but felt there was no need at the time but with this new diagnosis, it was time. You hear so many things about the difficulties of getting in different facilities as new patients and that is not the case with MD Anderson. They will take any patient in any cancer stage, even pre cancer check ups. I sent an email to the below email and explained my situation and got a return phone call the next day. It took a bit of time coordinating a time, but was able to get into see them in about a month.
Don't plan on going down there for a day, they told me to plan at least 3 days, but I was done in two hours because there was nothing they could do for me, my current treatment plan, past and present was exactly the same as they would have done. I also had scans from late February with me so I didn't have to have any scans done which were scheduled but insurance wouldn't allow. It was peace of mind I guess and reassurance as my MO there told me, now I'm in the system, they don't kick you out. He told me, stay your course, keep me informed of your progress via emails and if they decide to change your meds off Zytiga, I want to know about it, then I may have a clinical you qualify for, I'm still your doctor even as a second opinion, no time limit.
It's really good for peace of mind to get a second opinion, especially from somewhere with the reputaion that MD Anderson has. And being in their system, you can go back again in the future which you might want to do. Treatments often change as the cancer changes, so that's always a possibility. It will give you peace of mind going forward to know they will be there if you need them again.
My pleasure. I've gone through a lot of aggravation with SSDI and learned everything the hard way. Glad to pass on my hard-learned lessons so someone else can avoid them. Anyone else who needs help with SSDI application can private message me. I would be glad to help in anyway I can.
If it's complicated and you want to get diagnosed back to a period where you were still working, I would definitely get an attorney if I had to do it again. On the other hand, if it's straightforward and you are applying only back to when you stopped working altogether, you can do it yourself and the process is simple.
And speaking of getting an attorney, for anyone out there who is about to start the process: if you want to get an attorney for your application you MUST hire them before you start. Once you start the process, you can not get an attorney to help you and you can not get ANY assistance from an attorney. Another thing I learned the hard way.
Let me know how that goes with your application and the whole experience with the attorney, etc.
The first time I applied for SSDI I was declined. Then I got a lawyer who took care of the appeal and I was approved to receive benefits plus six months of back benefits.
Sometimes, that's what it takes. By law they can only get paid out of any back benefits you get, that's why they can't get involved once you start a claim on your own.
Not my out come ,went to md anderson last jan,feb,Mar. 3 0r 4 days at a time,brought my ct,BONE scans, they did not even look at them,had New scans plus full body MRI, same outcome,Dr. Was busy so she did not like answering any thing I had to say,just said needed chemo an ran out of room,had to call many times to get detailed report on what was needed,nothing special, ma
I went to MD Anderson for a second opinion. Same result as yours: they got nuthin. But my treatment there left me quite unhappy. I felt like a slab of meat on a conveyor belt. I was told in so many words to shut up and do as I was told. When I mentioned some recent papers I had read, I was dismissed and told not to confuse my stupid self with highly technical matters. (I'm a scientist.) I spent 4-6 hours (not counting 8 hours of travel time) to see a doctor for 10 or 12 quite rushed minutes.
My local oncologist supported my getting a second (and third) opinion. She is well informed, compassionate, and most importantly, spends as much time with me as we need. Whether its 20 minutes or 45, we always have time to go over my tests, discuss any changes to treatment, discuss my future, give frank answers to my endless questions. I've yet to mention anything about new research that she didn't already know, and she doesn't mind at all that I read medical papers. She told me that I'm quite unusual in being so engaged in my treatment, but she is fine with that. MD Anderson definitely was not.
Getting second and third opinions is a great idea for such life-altering decisions. But my experience is that the big cancer centers (I've been to 3) are impersonal, machinelike, and get their exalted status from the millions of dollars of research grants and the papers they write, not from their patient care or improved outcomes.
thank you FCOFFEY i think we all hope for a magic bullet,i had to fly to houston from NC. to be pushed out of the Dr. office, after 15 minutes thankfully here in NC we have a Dr's who care, an with the internet everything is out there.
I can certainly understand your experience especially when I saw the size of the waiting rooms when we arrived. The waiting rooms were empty when we arrived and were filling quickly as we left 2 hours later. We were the first of the day, started at 7:00 with an appointment at 8:00 and were early for both, so we got lucky and were the first of the day. When I did see the MO, it was only for about 15 minutes, he was to the point, a bit sarcastic which made it better for me, and he complimented me on my knowledge of my disease and treatment. I am currently being treated at UT/Southwestern in Dallas and it is somewhat a cattle herding business there as well, but I'm happy with the staff I use.
I remember one time being so sick I thought I was dying. I went to my family doctor and he spent almost exactly 5 minutes with me for a co-pay of $50. He was impersonal and very robotic. In that 5 minute appointment, he checked me out, told me I had Pneumonia, prescribed an antibiotic, set me up for x-rays and sent me on my way. I was pissed off having paid $50 for a 5 minute session. But on the other hand, he gave me the correct diagnosis and the correct treatment. He got me on my way to recovery in the shortest amount of time possible. So maybe he deserved a tip for being so efficient. I do like doctors who are understanding and have good personal skills, etc. but ultimately, the most important thing is the results.
I live in Dallas and my primary MO is at UT Southwestern, Dr. Courtney. He is a great doctor and encourages me to get other opinions and seek out clinical trials. But I also have an MO I consult with at MD Anderson, Dr. Tu. He is great and many times will call me to discuss treatment options without having to make a visit to Houston. Dr. Tu also referred me to the Phase 1 clinical trial department at MD Anderson (Clinical Center for Targeted Therapy) and because of that connection I am starting a clinical trial that targets the DNA mutations in my prostate cancer. Since I am late advanced stage 4 and have exhausted all standard therapies, I was glad to get into this trial. This will be my 4th clinical trial. I participated in two at the NIH in Bethesda, MD and an LU177 trial in Houston at Excel Diagnostics. My motto is keep fighting!!
I also have Dr. Courtney at UT/SW. He is not a fan of my sarcasm. I know he has had a tough time telling me what I've got isn't giving in and he and I were disappointed he couldn't get me in a new clinical trial they had just been included in. I also like the MO at MD Anderson. It's nice to know you have two qualified coaches. I also like that both use the "My Chart" online communication software, it works well.
Dr. Courtney also tried to get me into one of his clinical trials, but my blood work was not good enough. MD Anderson just changed over to MyChart in the last year or so. Hopefully someday they will be able to link the two MyChart systems since both centers are part of UT.
Could you write of the details of the LU177 trial in Houston, please? I spoke to a researcher there but want to verify the details as the conversation seemed very curt. Thanks
Lu177 trial is being done at Excel Diagnostics. The negative part of this trial is you have to pay for the treatment. The PSMA scan is $5k and each treatment cost $10.5k. During the trial you will be treated 3 times 8 weeks apart and they may add a 4th treatment. Unfortunately, after two treatments I had to leave the trial because my cancer was still progressing.
Thanks so much for details. I found my notes from the conversation I had with the researcher and I was also told my husband had to have failed with Xtandi which he recently started.
Hopeful that price will drop by the time he qualifies.
Just goes to show that even the same doctor can give very different results. I saw Dr. Tu and liked him despite the MD Anderson meat processing approach to medical care. During our brief consultation, I explained to him how far I had to travel, and he assured me that we could consult over the phone.
So I made a telephone appointment. As luck would have it, some things happened to me that very much increased the urgency that I speak with Dr. Tu.
Forty minutes before the appointment, I was sent an email telling me that the appointment was canceled. The email stated that "Dr. Tu had you on his schedule for this afternoon. He would like for you to reschedule and come to the clinic for your visit, he feels that seeing patients in person is a better practice."
I was rather upset, and explained to the nurse who wrote the email that I was 2,500 miles away at the time. I requested that Dr. Tu call me or reschedule the telephone call for another time. Nope.
So not only does Dr. Tu not call me, but he blows off appointments with essentially zero notice. I have no idea why my experience is so different than yours. I fired Dr. Tu and MD Anderson; there is far too much choice available to tolerate such gross disrespect.
Under your circumstances, I'd have done the same thing! And I will do the same thing if treated that way in the future. May I ask what your diagnosis was at the time of communication with MDA and how long ago it was?
same outcome, different Dr.,was told we could commun. by phone or e mail,was told to make an appt. they think we are stupid, side note i keep getting mail asking for donations
Health care is a monopoly, and monopolies tend to mistreat their customers.
I get requests from MDA for donations as well, they go straight into the trash.
Any decent pizza parlor (or any other non-monopoly business) understands that one unhappy customer does more harm to the business than 100 satisfied customers can overcome. But monopolies don't have to satisfy their customers.
To paraphrase Lily Tomlin, "We're MD Anderson. We don't care; we don't have to."
What they will never understand is that for the rest of my life I will talk smack about MD Anderson in general, and Dr. Tu in particular, whenever the opportunity presents itself.
Maybe it was a little compassion, when a doc has to tell you its gonna get ya and your the first of the day, maybe he went easy on me. He did make the comment he felt useless that he had to sit there at that computer and enter so much information he felt the interaction between patient and doctor suffered. Sure, I got nothing also, I'm getting the standard of care, as "Cmdrdata" refers to below. I knew that before I went down there expecting them to say this would be our course.... but.... we are doing a clinical trial. If the MDA Dr blows me off down the road, I'll be done with him, I like my current MO, he be smart enough for this ole Texas boy, I'm still here.
I've always believed that it is NOT the institution but the doctor you consult that will make a difference in how you will get the best management of cancer treatment. The majority of doctors, even at MDA or other major institutions follow the SOC (standard of care) and only a small percentage will do RP (research protocol) to treat you, regardless of institution. So do your research (is he/she active in research, willing to go out of the box and prescribe non-standard treatment, etc, etc. In my case, in 2010 I had mets in L3 and iliac lymph node. I consulted 3 MOs before finding one that I believe truly cared about treating me the best way.
And that is exactly what I am getting, the SOC. The chemo worked and eradicated about 50% of the bone mets, but the hormone therapy isn't working and a couple remaining/existing bone mets in my spine are growing. Our hopes are the Zytiga stops that growth. If anyone has had a similar situation, I'd love to hear results. I'm 3 weeks into Zytiga.
I can only echo what Cmdrdata has written with emphasis on active research. In my case I found a man who spend his time roughly; a third, lab related, a third, patient related, and a third, class lecturer related. On recommendation from my then current Radiation Oncologist who also spent his time the same way, was prefaced with, "I don't know if I can get you in." This was back in 2004 and I still see the most compassionate person I have ever met who always has time for me.
I admit my opinions are biased. When faced with mets from this bastard of a disease, I added only two questions. "Doc, if you were me, what would you do?" After received the answer, "Do you know one?" The first answer, find the best Medical Oncologist that specializes in Prostate Cancer; not any other preamble in academia and research. This person will be cutting edge in treatment rather than what I or others can do in extending life.
I asked first question twice and got the same answer. As to the second question, the first said no and the second said yes. The first RO was in private practice and owned a Prostate Cancer treatment facility. The second RO, was in academia. Finding the right guy is hard. Best advice, find the guy that you feel comfortable with knowing exactly what can be done as not all metastatic prostate cancer is equal.
Reflecting, I'll never forget my first appointment. After spending 2 1/2 hours listening to him explain what he can do and his opinion on the best approach for my cancer, I was sold. I pray each day that he is as successful in his cancer fight as he was in my Stage 4 PCa treatment.
Note: because of the time doesn't with me, others were delayed with their appointments. Because of his compassion, extra time time is spent when bad news is given; again causing others to be late with their appointments. Knowing this, I never complain about sitting in the waiting room waiting to see my hero! In fact, when others complain about their time in wait, I always introduce my self and ask, "If you were receiving bad news, how much time would you want the doctor to spend with you? Has he ever failed in completely answer your questions? While in the treatment room, have you ever felt rushed?" In all cases, the disgruntled patient or spouse, settle down.
I am looking forward to my appointment next Tuesday and seeing a "good man."
GD and I share the MO, and unfortunately our MO is currently battling his own health issue and thus the reason someone in this forum recently posted that he is not taking new patients. Since Thanksgiving 2017, I have only seen my MO only once, and that was on my last visit about 3 weeks ago. I am praying for his health to return, and that he has been seeing his other patients regularly since then. He actually came in to see me after seeing that I was in the clinic that day. We talked for about 30 minutes. He is still actively involved in research though.
Wow, its a small world, 2 pairs sharing MO's. I have no one to blame but myself, for not getting regular checkups like one should. I'd had PSA tests in the past, don't recall there ever being a red flag. What triggered my diagnosis was back and rib pain ultimately leading to an MRI from an Orthopedic showing how much of a mess I was really in. It could be from the first bone scan my MO knew it was a matter of time, but lets try what we know works and it has worked some, but now it isn't. I'm still a lot better off than I was 11 months ago!
Great post. Have thought about a trial but worry about the affects as I am doing good right now at 19 months since diagnosed. I’ll keep that e mail on my contacts Hang in there Larry
Thanks, good point about side effects. I too am doing well and feeling pretty good, and really don't want any kick ass side effects making life miserable right now. I got diagnosed in April but didn't get rolling until May and didn't start feeling good until about November.
I was in a clinical trial at MD Anderson, Houston. For about seven months I was treated with Opdivo and Yervoy. Unfortunately, it had virtually no affect on me and I had too drop out of the trial. I was very impressed with the MD Anderson facility and the people who work there. The facility is very large and it is surrounded by a number of nationally known other medical facilities. It was a very impressive experience.
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PSA incr-should continue Zytiga ?&bone mets incr but ok CT //OTC pills now-- what dr. manages pain progression?
PSA went from 1340 to 2.4 in 2 months on Lupron and Casodex 50 mg
New to cancer, New to site
Proton Therapy Had PT Therapy 15 years (2009) ago 5 year follow Up No Cancer Just Diagnosed with Mets in Bone/Pelvic Lymph Nodes in 2024
