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advice needed: seeking prostate cancer specialists in NYC area

vartabebo
Posts: 10
Joined: Feb 2011

Hi everyone,

My dad's prostate cancer just returned after 10 years of remission following radiation therapy. His PSA is now 6 with one possible involvement in a regional lymph node, no other tumors detected by MRI, bone scan and cat scan.

His urologist is optimistic, he feels we "caught it" almost immediately after it spread. He just started combined therapy with Casodex and Trelstar. However, the doc recommended we start seeing a medical oncologist who is a prostate cancer specialist to make sure we do the best we can do for him as the years go by.

Needless to say, we are very worried, though having read many of the posts on this forum, we are increasingly hopeful that with proper treatment and a bit of luck, Dad can have at least five more years of normal life. Currently he feels great and has no symptoms of any kind (other than the stress of the diagnosis).

Can anyone recommend prostate cancer specialists in the New York City area that they have seen or are currently seeing. Our medical oncologist told us he is "not an expert" in prostate cancer, which is a pretty honest thing to say to a patient.

Thanks for your help and God bless everyone.

Arthur

VascodaGama's picture
VascodaGama
Posts: 1531
Joined: Nov 2010

Hi Vartabebo,
I am sorry about the news on your fathers' recurrence. You may try Memorial Sloan-Kettering Cancer Center in NY. They are very highly recommended specialists of prostate cancer.
You can have a list of the doctors and their SV in MSKCC's site. Dr. Howard I. Scheris known for his reseaches in prostate cancer.
Have a look here;
http://www.mskcc.org/mskcc/html/17754.cfm

Hope it helps.
Wishing the best to your father.
VG

vartabebo
Posts: 10
Joined: Feb 2011

Thanks so much VG! Will check out the resources you suggested. All the best to you.

Noniu
Posts: 45
Joined: Apr 2010

HI ARTHUR!

MY FATHER CANCER RECURRED AFTER SEED IMPLANT TEN YEARS AGO. HIS CANCER HAS GONE TO HIS BONE. HI HAS BEEN ON CASODEX, NILANDRON AND NIZORAL, NONE OF THESE TREATMENS WORKED FOR HIM. HIS ONCOLOGIST RECOMMENDED CHEMOTHERAPY AND PROVENGE. MY FATHER REFUSES CHEMO AND HAS BEEN WAITING TO GET PROVENGE, UNFORTUNATELY IT WILL BE NO POSSIBLE, ZOMETA HAS CAUSED PROBLEMS WITH HIS KIDNEYS. WE LIVE IN NEW JERSEY, MY DAD'S ONCOLOGIST IS AT THE HACKENSACK CANCER CENTER.

IN THE INTERNET I FOUND A LIST OF TOP ONCOLOGISTS AROUND THE COUNTRY. IN NEW YORK DANIEL PETRYLACK, MD, ASSOCIATE PROFESSOR OF MEDICINE AT COLUMBIA UNIVERSITY MEDICAL CENTER, IRVING PAVILLION, FLOOR 9, ROOM 919 161 FORT WASHINGTON AVENUE, NEW YORK, NY 10032, PHONE 212-305-1731

DR. HOWARD SCHER, MEMORIAL SLOAN KETTERING CANCER CENTER, NEW YORK

TRY TO GET DIFFERENT OPINIONS BEFORE MAKING ANY DECISION, THERE ARE STILL OPTIONS FOR YOUR DAD.

WISHES BEST OF LUCK TO YOUR DAD.

NONIU

vartabebo
Posts: 10
Joined: Feb 2011

Thank you Noniu for your help. Regarding your father, is there a way for him to receive Abiraterone. Our urologist told us that the drug is being made available in limited cases to patients who have tried hormone therapy and chemo. Perhaps your doctors know more specifics about this..

Good luck.

Noniu
Posts: 45
Joined: Apr 2010

Hi Arthur!

According to my da'd Oncologist Arbaritone is given with chemo. My father refuses chemo, he was willing to get Provenge, unfortunately it will not be possible. He does not have many options and he is 80 years old.

Best wishes for your dad.

Noniu

Noniu
Posts: 45
Joined: Apr 2010

Hi Arthur!

Thank you for your recommendation...According to my dad's Oncologist Arbaritone is given with chemo. My father refuses chemo, he was willing to get Provenge, unfortunately it will not be possible, there are not many options left for him and he is already 80 years old.

Best wishes for your dad.

Noniu

mattmans5
Posts: 70
Joined: Jan 2011

Hi arthur ,

You might try Dr pramod sogani and to talk to someone their, try richard glassman , sr clinical social worker his # 646 422 4658 he is located in the sidney kimmel center for prostate and urologic cancers , and would be able to speak about their doctors

good luck

joe

vartabebo
Posts: 10
Joined: Feb 2011

Thanks Joe. All signs keep pointing to Sloan Kettering.

Good luck!

Arthur

VascodaGama's picture
VascodaGama
Posts: 1531
Joined: Nov 2010

HI ARTHUR and NONIU
Abiraterone is on trials now (I read it in the MSKCC) for restricted cases. It is also been accepted at private oncologist clinics such as the office of Dr. M. Scholz. Johnson & Johnson, the provider, can give you a list of other places in New York; they are accepting participants before the drug gets FDA approval maybe in May.
Results from phase III have shown better results for this drug than to Ketoconazole, and much less side effects.

Just see if anyin this site;
http://www.mskcc.org/mskcc/html/2270.cfm?TAB=All&SORTBY=LayTitle&ORDER=ASC&SelectedDisease=Advanced+Cancer&x=13&y=12

VG

klaymen
Posts: 2
Joined: Mar 2011

Hi all,

If you have the possibility to get Abiraterone, you should try it out. My father suffers by advanced prostate cancer, he got the diagnose 17 years ago (with an initial PSA of 130!), they brought it down by radiology and then hormone suppression, but nearly 3 years ago the cancer became hormone resistant. Last year he was treated with Taxotere, but that could only stabilize it a bit, and in January his PSA values were roughly at 1400 and progressing. He started to take morphine against the starting pain (skeleton) and lost a lot of energy. Fortunately he could then join the Abiraterone study and gets the drug since end of January. After around 3 weeks he indeed started to feel better, gained weight, and last week (after 6 weeks of treatment) the doctor checked his PSA - it dropped down to 700. Still a lot, but it's a drop of 50%, and no adverse effects whatsoever. Andmore importantly, his quality of live is so much better - he even starts to do garndening! Yes, we know it's just a gain of some months and not the magic bullet, but the results are indeed impressive. I just hope they hurry up with the approval!

Andy

windowlite
Posts: 2
Joined: Feb 2011

Hi Arthur ...

Please have your father ask his doctor about a wonderful new, way less toxic, FDA approved treatment for hormone-resistant prostate cancer, called "PROVENGE".

While researching a less toxic treatment for my father's type of cancer, I came across PROVENGE .. an actual 'treatment' for a certain stage of cancer which your father might be in now. It's the beginning of a whole new paradigm in treating cancer - in a non-barbaric way .. It harnesses the persons 'own' immune system in that it re-trains it to recognize again, the cancer cells (like it used to do) to attack the way it used to do. Some men have lived many months .. many have lived 'years' longer than was expected!! It's done better in life extension than Taxotere, and 'without' all those horrible side effects!!!

You can watch a video about it on Provenge.com and also go to the company who makes it: Dendreon.com. The first plant was just approved by the FDA last April. They've just finished the other 75% of it now that it's been approved. There are also facilities being built in Atlanta and LA, which will be done this summer, I believe.

You're welcome to email me if you have any questions.

Besssssst to your father !!!

window*

windowlite
Posts: 2
Joined: Feb 2011

http://www.youtube.com/watch?v=8IcIHXyIvsk

Dr. Penson, Prof. of Urologic Surgery explains he has NO connection to Dendreon, and wants to explain the who, why and how? of PROVENGE.

http://www.urotoday.com/media/presentations/provenge/penson_provenge/player.html

Dr. Penson explains about how Provenge works by stimulating the patients own immune system.

VascodaGama's picture
VascodaGama
Posts: 1531
Joined: Nov 2010

Andy
Thanks for posting the affair of Abiraterone in your dad's case. It is wonderfull to know about his 17th years as a survivor of this "bandit".

I wish the best to you both and a continuous good progress in his fight.

VGama

Hearted Doc
Posts: 3
Joined: Mar 2011

Authur,
MSKCC is the right place to get more advice. Depending your dad's overall condition (such as age and/or other concurrent medical issues if any)and assessment of his disease agressiveness, more hormonal therapy would be suitable. Ketoconazole or Abiraterone may work for him. Some patients treated with those hormonal agents can have sustained responses. Sciences behind Provenge are not strong or not well established, treatment with that may trade off his safety while most likely he does not see an antitumor response at all. Recent analyses suggest that Provenge may harm patients instead of offerrring a benefit. In addition, it requires invasive procedures.
With my best knowledge and wishes.
JDOC

mrspjd
Posts: 688
Joined: Apr 2010

JDOC,
Welcome to the forum. I understand the limited benefits of end stage PCa txs such as Provenge, find your comments about Provenge interesting and, would like to learn more. It might be helpful if you would elaborate specifically on your statement "Recent analyses suggest that Provenge may harm patients instead of offering a benefit." Is there a study or source you might cite for that info or, perhaps relate your personal experience with Provenge and/or PCa?

As for the Provenge tx requiring "invasive procedures," it is my understanding that, while blood draw and infusion are part of the Provenge tx protocol and those procedures are generally classified as "invasive," so is virtually every diagnostic test & tx for PCa. I'm not really sure I understand how your statement "In addition, it requires invasive procedures." is pertinent, as any invasive procedure has inherent risk.

Thanks for any clarification you can provide.

Hearted Doc
Posts: 3
Joined: Mar 2011

Thanks for your greeting. If one keeps scientific mind open, information from the following links may bring up some vigilance or answers to your questions about the product's specious efficacy. The cancer treatment history has not seen a product that prolongs survival but is devoid of antitumor activity except for Provenge. New studies are needed to show whether the prodcut really works in the real practice world where the fraudulent control used in the previous trials do not exist anymore. To think that an antihypertension drug improves one's cardiovascular performance without decreasing blood pressure, and to think that a car is moving on highways without engine activity.... You may find Dr. Longo's comments in the NEJM helpful if you google.

http://jnci.oxfordjournals.org/content/early/2011/02/08/jnci.djr041.extract
http://www.npr.org/blogs/health/2010/08/02/128930253/provenge-medicare-coverage-comments
http://www.scribd.com/doc/34285499/Provenge-Trial-Alternative-Explanation-for-Observed-Survival-2

Regarding whether it requires invasive prodcedures, people may have different understandings. Nevertheless, a large central venous catheter rather than regular peripheral IV access will be inserted for isolating and collecting patient's mononuclear cells. Insertion of the cather is assoicated with infection, bleeding, pneumothorax, blood clots,and arrhythmias. That appears invasive to most people.

The original intention was to help Arthur find good 2nd opinions for his dad.

HD

mrspjd
Posts: 688
Joined: Apr 2010

Hearted,
Appreciate your reply. First and foremost: I pride myself on having an open mind, while at the same time taking a critical approach, especially when reviewing medical literature related to PCa.

I’ve reviewed the links you posted and I’m sure you’re aware that they are op-ed pieces, National Public Radio health blog for one, and none of the "discussions" on the links you cited are based on any solid scientific or medical study data to support the far reaching & emphatic statement in your first post that I was referring to, i.e. “Recent analyses suggest that Provenge may harm patients instead of offering a benefit.” Perhaps there is something in the Provenge clinical study data on PubMed that you might cite to support your claim?

I think we can agree that Provenge tx protocols require invasive procedures. But just as Provenge requires invasive procedures, so do PCa txs for intermediate to advanced PCa, as well as diagnostic testing for PCa. Perhaps you also think that men shouldn’t get PSA testing or PCa biopsies, endorectal MRI’s, CT's w/contrast, RP's, RT's, or ADT injections since any of those choices involve a wide range and degree of invasive procedures (some, obviously more involved than blood draw and infusion) and, all inherently posing risks such as infection, blood clot, bleeding, cardiac arrhythmia, sepsis or worse.

Potential risk from invasive procedures can vary greatly with many factors contributing to those risks. However, as a general rule, and as I’m sure you’re aware, the overall risk to benefit ratio would be statistically low from those invasive procedures over the potential benefit. The relevance of your statement “In addition, it requires invasive procedures." is at best misguided, again, since any invasive procedures have a wide range of inherent risk.

Hearted Doc, from your user name, one might believe that you could be a doctor, or at best, someone working in the medical realm. The CSN site is for cancer patients and family of cancer survivors who share lay opinions and personal experiences. If you have such experience with PCa, please, by all means, contribute and share your experience, perhaps as a PCa patient?

With all due respect, IMO, emphatic general claims made without providing factual basis to support those statements, particularly from a user whose iconic name implies a medical professional (whether true or not) is cause for concern, perhaps even bordering on malpractice and, in the long run, may do more harm that good, no matter the initial intent.

Best,
mrs pjd

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