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Should go to MD Anderson now?

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Posted 6/3/2016 1:11 PM (GMT 0)
I am wondering if I should go to MD Anderson now, I am currently being treated in Tulsa with ADT. My Oncologist is very busy treating many different types of cancers. With my urologist I believe I am the only stage 4 prostate cancer he is treating now a typical office visit last 5 min. I feel like no one is watching my entire case and leaving me to investigate what might be out there. Has anyone had the same experience? I have learned more from this forum in the last few days than from my doctors all year. I was told not to exercise it might break my back because of the spine lesion. I ask about a special diet for prostate cancer and was told it’s too late, just eat well and try to keep my weight in control.
I live over 500 miles from MD Anderson and it would be expensive for me to travel there I have ask my health insurance HMO and I think they will cover the work up and treatment. My Urologist said that there is nothing else to do till my PSA rises; so maybe I should wait till that happens to travel to MD Anderson?

Larry

April 15, 2015 Prostate cancer metastatic to multiple sites (Bones) PSA 203.81 Pelvis Adbomen w contrast L inf pubic ramus, L ischial, pubic rami, thoracic spine T11-12, R eighth rib Metastatic prostate cancer with 3 bone lesions Gleeson 4+5=9 80%
5/27/2015 Degarelix /240mg
5/27/2015 1/ Month - XGeva(Denosumab) 120mg
Lupron 45 mg / 6 months
7/16/20015 Taxotere (docetaxel) every 3 weeks, 6 cycles


3/17/2015 181.7
4/15/2015 203.81

1/15/2016 0.4
3/24/2016 0.3
4/29/2016 0.3
Posted 6/3/2016 1:20 PM (GMT 0)
Are the stats and dates you present part of your forum signature? That saves a lot work for you and helps us.

I could not figure what treatment you are currently on. What is your current treatment?
Posted 6/3/2016 1:28 PM (GMT 0)
I am currently on ADT now.
Posted 6/3/2016 1:45 PM (GMT 0)
Larry, just from your description of your Drs and how they interact with you, while the information is limited, I'd go to MD Anderson now, and get some experts who are interested in helping you without being fatalists, involved in your treatment plan.

Just the response you got to your question about diet, makes me think the Dr is not really spending much time thinking things through. He could have said, I don't know, but here's a referral to a nutritionist.
JMHO
Posted 6/3/2016 1:47 PM (GMT 0)
Signature test
Posted 6/3/2016 2:02 PM (GMT 0)
First things first. You ARE at elevated risk for brittle-bone disease BOTH because of the bone mets you reported AND because of your ADT treatment (because it lowers estrogen, a hormone which keeps bones strong). It is very important that you protect yourself against having a SRE, or skeletal-related event; that would be bad, but you cannot shift to a sedentary lifestyle.

I hope that your doctor has prescribed a bisphosphonate, usually zolendronic acid (aka Zometa), along with your ADT to prevent decrease in bone strength. And you need some weight-bearing exercise, even if it's merely walking, to keep active and strong. Have you had a bone density scan to baseline and monitor your bone status? And what about supplemental calcium and vitamin D?

Maintaining bone strength is absolutely an important preventative care step which would be high on my list. You mentioned none of this...I can only hope that these have been topics already covered by your medical oncologist.

MD Anderson is one of the top cancer facilities in the world. Patients fare better, especially advanced cases like yours, by going to the leading centers simply because the doctors there are more specialized and have often "seen it & done it" with many other patients before you.

best wishes
Posted 6/3/2016 2:08 PM (GMT 0)
Larry, I think it's good that you have done chemo early and your PSA is down to .3 . And also Xgeva will help with bone strength.
I went to MD Anderson about 2.5 years after diagnosis when my PSA became detectable again and was rising. Go ahead and do a self referral online. They will assign a case worker to you and things will move quickly. Try to get a room in the Rotary House, the hotel connected to the main MDA campus.

I asked about what to avoid eating when I was at MDA and the answer was sugar. There are several of us here who use supplements. Why not? My PSA is dropping while using these.

It sounds to me like you really want a second opinion and feel that maybe your local doctors have fallen short in being attentive to you and your case. You will at least have taken the steps to a second opinion at a major cancer center.
Posted 6/3/2016 2:13 PM (GMT 0)
Larry, the most telling thing you said is that you are the most advanced case your urologist has seen and your oncologist is a generalist. In my opinion you should be with a world class urologic oncologist that has demonstrated successful experience with advanced high risk cases. If you can find that at MD Anderson, then go.

The good news it looks to me is that your PSA is currently low and stable. More oncologists are now using that period as a time to increase the treatment under the theory of hitting the cancer harder when it is weakened. Your doc appears to adhere to the theory or not doing more treatment until the PSA goes up indicating it is stronger and potentially more difficult to control.

Also, managing the other aspects of your bone health and overall health should be part of the overall care.

At the least I would have a consult to get their determination and direction. Another opinion can not hurt.
Posted 6/3/2016 2:26 PM (GMT 0)
No bone density test, the more I read from all of you the more I realize I need to go now. I will try to get a room in the Rotary House, thanks Faustmann.
If any have other tips for MD Anderson I would appreciate.
Larry
Posted 6/3/2016 2:44 PM (GMT 0)
I went to MD Anderson 1000 miles saw Dr. Corn all he could recommend to me is IMRT for local control. could not afford the stay received IMRT local. As I was told it is a waiting game.
Posted 6/4/2016 1:15 AM (GMT 0)
Larry, I didn't see where you're located. MDA is certainly in the top of the top tier of centers. It might be worthwhile to do a google search of "top NCCN cancer centers" and see what else is near you. The really awesome part of dealing with the top centers is that all the principal doctors know each other and communicate back and forth all the time.

Best of luck to you. What you're doing is something I've known in my heart from the day of my diagnosis: To borrow a slogan, "go big or go home". PC is a funny beast, and getting to the true experts is one of the most important things we can do.
Posted 6/4/2016 2:03 AM (GMT 0)
Larry,
I went to MDA for my PCa surgery and I have experience there from 11 years ago when my wife was treated there for renal cell carcinoma. The experience was good for both of us. They always treated her with compassion and utilized cutting edge technology. The same was true for me and my surgery. They also have some off campus apartments that are part of the MDA system and they provide a shuttle. The Houston medical center is a busy place and it can be intimidating getting around from place to place so if you can stay close to MDA I recommend that you do so. MDA has been rated the #1 or #2 cancer center every year since 1990 so I don't think you can go wrong by going there. I just checked and here's a few quick facts. In 2014 MDA had 27,761 hospital admissions, 1,363,008 outpatient clinic visits, treatments, procedures and MDA has just under 20,000 employees. Amazingly I have never had to wait more than an hour for an appointment. I typically have my blood drawn an hour before my appointment time and they always have the result during my appointment. Sometimes there are as many as fifty people in the waiting room for the blood draw and it never takes more than 20 minutes to get in and out of there. They offer many clinical trials as well. I like the fact that they have a team approach. Another nice thing about MDA is you have online access to all of your appointments, reports, visit notes, pathology, scans, etc. I can pull up my test results, photos from inside my colon, etc. I have been to other hospitals and they do not compare to MDA. I know there are other excellent medical centers as well but I'm just providing my personal experience with MDA.

I wish you the best!
Posted 6/4/2016 4:47 AM (GMT 0)
Larry, It doesn't matter whether you are G6 or G10, stage T1 or T4, if your medical specialist won't spend more than five minutes with you, then go elsewhere, anywhere.

Your instinct to go to MD Anderson and the advice of the other posters is all the confirmation you need. Go there.
Posted 6/4/2016 6:31 PM (GMT 0)
My urologist gave me just five minutes of his time. I fired him and got a new urologist. It's you life and money so do not hesitate to change.
Posted 6/18/2016 10:05 PM (GMT 0)
I requested a referral to md Anderson 10 business days ago I ask my pcp to write the request and it was denied Friday. The HMO told me when they talked with my oncologist and urologist both said I was doing well.

So I called and talked with the nurse of my oncologist, she is new and did not know my case so when the HMO called her she just read the notes (I was doing well) from last visit in 2015. I explained that my bone lesions were hurting and thought that maybe they could be treated; which my oncologist and I had talked about on our last visit.
For that reason she will tell my oncologist Monday and she thinks he will be able to write another referral to md Anderson. Hopefully it will be approved this time (10 business days).

I read about Zytiga also TOK-700 phase 3 trial I hope they might help. Neither of my doctors mentioned any treatments that might help until my psa goes up. And they may be right but it seems like there is more out there.
I'm not sure about all treatments that are right for me but I am learning more on Healingwell.com.
Thanks Larry,
Posted 6/19/2016 1:46 AM (GMT 0)
Larry,

It will be difficult for you to obtain any of the advanced hormonals or immunotherapies outside of a clinical trial because you are still hormone sensitive. One pretty easy addition would be to ask your oncologist if you can take Celebrex along with your Xgeva - that combination caused a 20% survival improvement in the STAMPEDE trial.

- Allen
Posted 6/19/2016 5:23 AM (GMT 0)
Larry,
If you feel like you are being dropped to the back burner, move on.

If you can get into MDA go for it, I've heard great things about it.

If you are loong for bone supplements check out vitamin K2. It's part of the catalyst to tell your body to build bone structure. I've used it in the past, it helps notably. If you get it off amazon don't get now brand, in my experience it's lacking in strength.
Vit. D3 is the other part of the catalyst, it may be something else you want to check out.

I'm not sure about you, but whenever my doctor dropped the ball for me I took it to google and treated myself to the best of my degree until I reached the next Doctor.
Supplements are what kept me from back tracking though the little progress I had made
(While I am Lyme patient not a cancer patient, I can relate to your story all to well)

Never be afraid to do your own research and supplements. Just check for drug interactions and with your available doctor before starting anything. Safety first
Posted 6/19/2016 9:20 PM (GMT 0)
ItisLyme,
Thanks for the advice and knowledge; I will be checking out vitamin k2. Every day I am taking 1200mg Citracal calcium supplement with 1000IU of vitamin D3; also 1000mg of vitamin C; and vitamin B12; also a baby aspirin.

I think I will get into md Anderson, and that will give me new doctors.
But if I don't I will need to change doctors. My insurance is an HMO and that is where the hold up is now.
Larry
Posted 6/19/2016 9:55 PM (GMT 0)
Allen,
Thanks for sharing your knowledge, I looked at the Stampede trial last year and did not realize Celebrex would help me. I just now searched for Stampede and read about it online and understand.
When reading about PC the medical terminology is hard to understand.

I will ask about the Celebrex along with Xgeva. My Urologist is the doctor that prescribed Xgeva and he gives me the shot every month. Doctors are busy but they must have some online place they can search for possible treatments. Both of my doctors did not know about Stampede.
Larry
Posted 6/19/2016 10:03 PM (GMT 0)
As you are learning, your insurance company has more to do with directing your treatment than anyone else....The Urologists job is done at this point..Your condition is now outside his skill-level. The insurance thing can be tough..Perhaps YOU could contact them, explain your situation and ask THEM to refer you to a Medical Oncologist in Oklahoma who specializes in Prostate Cancer if they won't approve a MD Anderson visit...

As long as the ADT (hormone treatment) is working, your PSA is practically undetectable and you have no physical symptoms, you can expect the bums rush from your MO...5 minutes, good-by....Only after the ADT starts to fail, your PSA starts to climb again, then he will take a little more interest in you and you will become eligible for more advanced drugs and treatments..He does not make these rules, the insurance companies do...
Posted 6/19/2016 11:47 PM (GMT 0)
Larry,
You may want to check out "The New Prostate Cancer Infolink." Mike and I (mostly Mike) comments on technical research studies in language we hope the average patient can understand. Here's Mike's commentary on this aspect of the STAMPEDE trial:

Unexpected and perhaps intriguing data from the STAMPEDE trial

Simply put, the combination of Celebrex and Zometa (Xgeva is probably OK too) improved failure-free survival by 23% in metastatic, hormone-sensitive men using hormone therapy. I think this finding was overshadowed by the principal STAMPEDE finding that early use of docetaxel was of great benefit.

You're right that doctors with heavy patient loads can't always keep up with all this stuff. There is nothing wrong with emailing a study to your doctor in advance of your meeting (it's polite to give him a chance to review and consider it), with a short note that you would like to discuss this at your next meeting to see if it's a good idea for you. Most doctors have come to expect this sort of thing from patients nowadays. Unless you have a heart condition, adding Celebrex to the mix of medicines you use, should be very safe.

- Allen
Posted 6/20/2016 1:36 AM (GMT 0)
All my doctors guard their E-mail addresses carefully...One, my Urologist / surgeon gave me his cell-phone number...I never used it....

"You've got 20 minutes..You can talk about anything you want or you can just listen to what I have to say. Your choice.." At least I know where I stand.....
Posted 6/25/2016 2:33 PM (GMT 0)
After being denied the referral to MD Anderson I talked with my HMO and they mentioned that I could change my plan to the St. John Health System group because they are now affiliated with MD Anderson. So I changed to that group and now have a new Oncologist; Dr. Jeffrey S, Delo my first appointment is July 5th.
Has anyone had experience with this?


Below is the information about the merger-

St. John Health System and Tulsa Cancer Institute joined forces in 2016 to introduce Oklahoma Cancer Specialists and Research Institute (OCSRI). Together, we are Oklahoma's first and only certified member of MD Anderson Cancer Network®, a program of MD Anderson Cancer Center.
What does it mean for my doctors?
The locally exclusive affiliation allows certified oncologists and surgeons at OCSRI and St. John access to some of the best cancer resources in the world. Through collaboration, we are expanding our scope of services and further advancing the prevention, diagnosis, treatment and research of cancer. With regular peer reviews, physicians have the ability to consult directly with MD Anderson experts and employ a wide range of multidisciplinary educational opportunities, including disease-specific and evidence-based clinical guidelines, treatment plans and best practices.
Posted 6/25/2016 5:59 PM (GMT 0)
Larry, getting plugged in to a major center like MD Anderson is a great thing. It means you do have access to the people there, who are in touch with your local people. It strikes me as an almost best of both worlds scenario. You don't have to physically go there--at least probably not--but you've got their experts in your corner.
Posted 6/25/2016 10:52 PM (GMT 0)
Thanks Halbert,
I thought the same thing, I have not really wanted to drive to Houston. But I do need to get aggressive with my PC.

Since finding this forum everyone here has really helped me with medical information and support.
Just from some of what I have read I hope to get in a clinical trial, and also would like to add Celebrex to my meds from the Stampede study. I read your story and I appreciate you taking the time to explain how you got here and how your are doing. Unfortunately my older brother has prostate cancer (dx October 2015) his treatment has been similar to yours.
Larry
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