Going to ME Anderson for a consult - Any Advice?

I am going to MD Anderson this week. Been under treatment for advanced prostate cancer for 2-years (age 55, mets in spine and ribs, original PSA was 227 - now 0.6., had radiation, on Lupron and completed 6 rounds of chemo - docetaxyl, Gleason (4+4)8.

My goal is to make sure I'm doing the right things, see if there are any treatment options I should be considering, studies I may be a candidate for, etc. I have not had a bone scan for 6-months, so I'll have one there. Been having slight pain in my ribs and back lately that come and go.

Any suggestions for questions I should ask, or how I should maximize my time there? If appreciate any guidance you may have or experience visiting MD Anderson.

Thanks!

31 Replies

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  • In addition to questions about your slight bone pains, here are some possible questions to ask:

    Do they recommend particular vitamins, supplements, or other dietary changes? Which ones?

    Do they recommend metformin? Avodart? Other prescription drugs that might complement your existing treatments?

    What do they think about immunotherapy - with Provenge? with Prostvac? with checkpoint inhibitors like Keytruda? Others? Is immunotherapy practical for men who have had chemotherapy? Is there a waiting period or some blood test indicator that will indicate that immunotherapy might work (this is because some chemotherapy drugs can compromise the immune system.)

    What do they think about testosterone replacement and BAT (Bipolar Androgen Therapy)?

    Are there any particularly promising clinical trials that they think you should look into?

    How often should you get PSA tests? What about other testing - testosterone? dihydrotestosterone (DHT)? scans? other? What target values would they look for for PSA, T, DHT, or others?

    If they don't recommend any additional treatment now what, in their view, should cause you to seek additional treatment, e.g., PSA number, PSA velocity, T or DHT level, others?

    If you get any interesting answers, please let us know.

    Good luck.

    Alan

  • Your advice is incredibly useful. I'll ask and give you an update on what I learn.

    Thanks for your help!

  • James, you might also search this site for postings by pjoshea13. Patrick strikes me as having a deep interest in, and knowledge of, recent advances in the medical science of prostate cancer. You may get some more interesting ideas for questions from his postings.

    Alan

  • Thanks, Alan. I certainly will take a look!

    Best regards,

    James

  • Excellent line of questioning...

  • Alan thanks for all that excellent and concise information. Because my PSA and general health have been excellent to date I have tended to drift along. Bloods today and results tomorrow with Onco at Charing Cross Hospital, London. And now questions tomorrow, answers on here shortly. David

  • Boy!thats a tuff road .God bless you! And good luck with Anderson and the test.

  • I have been under treatment at MDA since 2013. Metformin and supplements are not met with great agreement. They tend to prefer standard medical care. That said they will look at your case and recommend any clinical trial they have going on that fits your particular cancer progression. I like the fact that the trials get you to take scans and blood work far more frequently than not. All the things yoy mention are in the mix for treatment. On the negative side, they have a huge patient population, so things seem more rushed now. Overall, i am pleased with the care i have received there.

  • Very helpful! Thank you!

  • Let me know when you have appts. There. If im there i would be happy to meet you!

  • I've been on Metformin and Lupron at MDA for quite a while now. Also in a trial there.

  • First question out of the box I like to use with docs. --is if we reversed places, and you were me what would you be doing, to preserve your life. That usually puts them on their heels. Having been Gene Mapped is important--Have you? Can you get done in time or have them do it at MD. Anderson. Immunology Trials are the rage for Pca today.

    Subjects:

    ADT---single, double, triple, quadruple, Quintuple blockade

    IADT

    Vacations

    AR-V7 Gene Splice test

    BAT

    Galactin-3 inhibitors

    Chaarted Stampede

    CBD and THC oils

    C-Reactive Protein test

    Targeted Therapies[Checkpoint Inhibitors, PARP Inhibitors, Drugs that block cell to cell communication, Hedgehog Inhibitors, Drugs that target Endothelial cells, Passive Immunity[Stimulating The Immune System], GVAX[Engineered Prostate Cells, returned to the body], Prostvac[Genetically engineered virus], Provenge, Src Inhibitors[bone-tumor interface drugs], Bone Drugs, Radium 223.

    Gene Mapping

    PSA, T and DHT testing, and their thoughts, protocols--how they interpret numbers.

    Testosterone overload treatments[some ate BAT, others are different], Their Thoughts--as John Hopkins is leading the research in this field.

    Sorry that is quite a list: I cannot go into detail about each one above--but you can do some study on the Internet, and pull up papers.

    And discuss Clinical Trials, as since you have gone to bone mets, you qualify for trials, probably more than a few. And on trials, can you do it locally with your Docs. Participation, or do you have to be in Houston.

    Nalakrats

  • Great suggestions to add to my questioning! Can't thank you enough. I'll let you know if I learn anything worth sharing after my trip.

  • While in Houston you might want to also get an opinion from Robert Amato, Memorial Hermann Cancer Center, 6400 Fannin St., Suite 2900. He aggressively treats prostate cancer.

    Also, be aware there is a free cab service from most of the hotels near the medical centers.

  • 713-704-3961

  • 713-704-3961 Memorial Herman Cancer Center

  • Thanks for the tip on a doctor as well as regarding the logistics!

  • Forgot one thing--I think you are in Atlanta---use to live there--now in N.C Mountains. I use the Levine Cancer Institute in Charlotte, a 3 and 1/2 hour drive, for you---2 for me---going this Weds.---they are pretty top notch--but are quiet---so you do not hear much about them. Over 100 Cancer Docs. Clinical trial are many, and They are hooked into Tapur.Org. A non profit group of Oncologists world-wide, and one of only 4 groups that works with Tapur. You would have to go to Tapur.org---to read how it works.

    Don't mean to overload you!

    Nalakrats

  • I appreciate the idea and will look into it depending upon the outcome of my visit to Houston this week.

    Have a great day!

  • I'm assuming that is MD Anderson Houston. There is a Banner MD Anderson in Gilbert, AZ, much closer to me. There were some horrible Yelp reviews of this operation in AZ. Anyone else have experience with Banner MD Anderson? I am wanting to make a selection for my future care. I live in the Phoenix area.

  • The reference MD Anderson is part of the Texas Medical Center (TMC) which is home to some of the best hospitals and medical research facilities in the world. It is a Medical Mini-City which includes: Baylor School of Medicine, The University of Texas Health Science Center (Medical School), and Texas A&M University Medical School. NOTE: The University of Texas Medical School opens in two years. Teaching Hospitals: Memorial Hermann - TMC, Methodist Hospital TMC, MD Anderson - TMC, Episcopal Hospital TMC, Texas Children's Hospital - TMC, Ben Taub General Hospital, John Sealy Hospital, Michael E. DeBakey Veterans Affairs Medical Center.

    MD Anderson Cancer Center, the Memorial Hermann Cancer Center, Baylor College of Medicine, and the Methodist Canter Center all have top medical researchers doing their thing.

    Gourd Dancer

  • I think Alan Meyer's post is good advice. I have been there twice and am now waiting for a trial to begin to see if I qualify. M D Anderson in Houston is THE M D Anderson. I believe that the others are associated but possibly not up to the level of the main hospital. I was impressed to find that my doc there deals with only prostate cancer.

    From Hobby airport you can take the bus and transfer to light rail which will deliver you right across a small park from the MD clinic that you will probably be going to. The cost os $2.50 one way which is so much better than $50.00 for a cab.

    Use google maps with street view to become familiar with the streets; when you get there for the first time it will all look familiar; it is a very large complex of various medical institutions. The first time I went there, I thought I was in Houston; Houston is about six miles north of there.

    If you stay close, you will not need a car. When I visit I stay at a Best Western which is a 15 minute walk from the clinic on Holcombe Blvd.

    It is an impressive place.

  • Thanks! Very helpful!

  • If you are not going long term but staying a few days at a time and can drive or have someone who has a car with you, consider staying at the Palace Inn - Medical Center. Its a cheesy name but rooms are very clean. Not much in the way of amenities but their medical rate is $70 - including tax per night! I spent a lot of time in Houston and i don't think I've stayed anywhere as decent for such a good price (713) 239-2818 make sure you tell them you are there for MDA so they give you that rate. If cost is not a factor then Also look at the Rotary House - which is also right at Medical Center and you can walk/shuttle to and from it without going outside - very handy in the summer! They are around $130/ night but you have to reserve far in advance to get a room.

  • Thanks for the advice. I really appreciate it. We are staying at Rotary House since I'll be having a number of appointments, scans, etc. I'll give the Palace Inn a try next time.

  • I add that Robert Amato has been my Medical Oncologist for 13 years. He is researcher in academia specializing in Prostate and Kidney cancers - Professor at the medical school with the University of Texas - UT Health Science Center. He see his patients out of the Memorial Herman Hospital Cancer Center. I started with him when he was at Bayor Medical School when he saw his patients out of the Methodist Hospital Cancer Center.

    I was a Gleason 7 (4+3), PSA at 32.4, mets to L2 and T3 of the spine. My last Lupron injection was seven years ago and I remain with an undetectable PSA. Dr A. Is my hero! Certainly worth a consult while you are in Houston and can work it.

    Gourd Dancer

  • What form of ADT/Treatment did he do with you?

    Regards,

    Craig

  • Craig, I received ADT in the form of Leuprolide (either Lupron or Eligard) every 12 weeks for 24 months with Bicalutamide initiating after the completion of chemotherapy. I my I stopped the Casodex after six months and continued the Lupron/Eligard injections for six years. Then I stopped to see the effect on my PSA. I remained undetectable.

    Chemotherapy consisted of Ketoconazole and Doxorubicin for weeks 1, 3, and 5 and Estramustine and Docetaxel and for weeks 2, 4 and 6. During weeks 7 and 8, no treatment was received. I also took 30 mgs of Prednisone a day (20 mg in am and 10 mg in pm)

    Mike

  • Thanks, Mike

    Craig

  • One trial that keeps coming up is the following. I'm in a different trial, but I'll do this next as required. mdanderson.org/patients-fam...

  • James your case seems similar to mine. I am new to this forum. How can we contact each other to share info. I am be treated by the VA and MDA. My second opinion will be done by the VA.

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