Dad's advanced Gleason 9 PCa - Advanced Prostate...

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Dad's advanced Gleason 9 PCa

JAOP profile image
JAOP
15 Replies

Hello all. My dad was diagnosed 6 weeks ago with Gleason 9 advanced prostate cancer by a pathologist in Brooklyn, NY. He is an active 71 year old immigrant with poor English language skills. Since being informed he has prostate cancer, we have decided to have him treated at MSKCC (Sloan) in Manhattan, where they studied his biopsy slides and the pathologist downgraded the Gleason score to an 8. My dad's PSA was 1.5 on 10/16/17 and 6.4 on 4/17/17. According to his most recent blood test at Sloan, his PSA is 6.04. MRIs and CT scans with contrast indicate metastasis to the stem of the bladder, as well as the pelvic and abdominal lymph nodes (>3 nodes). A 1cm growth on his rectum was ruled benign after a biopsy, and a 5cm hemangioma is being considered benign becuase it has existed for over 5 years (possibly congenital). Bone and lungs were found to be clear of metastasis.

My dad began his anti-hormone treatment of degarelix (Firmagon) on June 30. According to his oncologist, he will continue hormone treatment and begin intense radiation in early October. He continues to walk, at least, 2 miles each day and continues to help care for his grandchildren. I have been reading up and am hoping my dad could qualify for immunotherapy as well. I am waiting to hear back from his oncologist regarding the possibility of immunotherapy and why he does not recommend a PSMA or PET scan at this time. Does anyone have any input on these topics and situation, as well as typical life expectancy in cases like my dad's?

Thank you all and good luck with your own situations,

Rob

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15 Replies
rococo profile image
rococo

Seem to be on the right tract given such a potent firmigone as an adjunct to rt.

eggraj8 profile image
eggraj8

The path that you father is on appears to be the standard treatment. It is standard because it has proven to work most consistently. The degarelix should control the cancer and hopefully the radiation will kill the cancer. The degarelix will reduce his PSA to a negligible level. After that you wait like many of us and hope the cancer doesn't come back. Periodic PSA tests will tell if the cancer returns which won't probably happen for several years after the radiation treatments. Best wishes.

smroush profile image
smroush

Your father's case of PCa sounds very similar to mine. I was diagnosed in July 2012 with a Gleason 9 that had metastasized to my bladder and pelvic lymph nodes. I was started on ADT (Lupron and Casodex) immediately and had external beam radiation in November and December 2012.

My PSA dropped to undetectable (< 0.1) in February 2013. I stayed on the ADT for 26 months; since October 2014 I have been off all cancer meds. After to going off the meds my PSA eventually bumped up to 0.1 and then to 0.2. It has been at 0.2 for a year now. So while my cancer is very likely not gone, it is progressing very, very slowly.

Of course every case is different, but there are some good results in cases like your Dad's. Best of luck to both of you.

JAOP profile image
JAOP in reply to smroush

Thank you for the feedback. We have been very anxious and scared by my dad's diagnosis. This information is very comforting.

Best of luck to all of you

Sloan Kettering is one the best in terms of expertize of treatment. He is in excellent hands, a HUGE plus. My daughter lives in the area and I'm planning on scheduling a visit there for a third opinion.

I terms of your fathers life expectancy, at least 20 years. 3 years ago I had a psa of 850 with mets to my bones and so many cancerous lymph nodes they quit counting. Today my scans show all nodes normal and an undetectable psa. Make sure your father continues to walk daily. Exercise and diet is one thing that causes those little cancer cells to run and hide.

I know this sounds morbid but your father is "lucky", they caught it early before it spread. If I were you I would begin looking for a nice hall to rent where friends and family can gather to celebrate his 90th birthday, he isn't going anywhere anytime soon.

JAOP profile image
JAOP in reply to

Thank you for all the encouragement. The positivity here is so helpful.

Good luck and God bless you all.

irwinb3 profile image
irwinb3 in reply to

Congrats. Would you mind filling us in on your successful treatment so we all can be informed? Much appreciated. Bill

in reply to irwinb3

Are you asking me regarding my treatment Bill?

Sisira profile image
Sisira in reply to

Nameless, please reserve a ticket for me to join this great birthday celebration. I am sure JAOP's dad will have many more years without much problem to receive his daughter's smile and care.

Sisira

irwinb3 profile image
irwinb3

Yes

j-o-h-n profile image
j-o-h-n

MSKCC is a great hospital with very able physicians and staff. He's in good hands. Remember what they say "most men die with PCa rather than from it".

Is he going to the Kimmel Center on 68th Street (off of second avenue)?

Good Luck and Good Health to your Dad and the rest of his family.

j-o-h-n Wednesday 07/12/2017 11:59 AM EST

GARunner1 profile image
GARunner1

JAOP,I am not a medical person, but you may want to ask your docs about the applicability of the recent findings from the Latitude and Stampede trials that show positive results from hitting advanced prostate cancer early with chemotherapy and drugs like Zytiga and Xtandi, if this has not already been discussed. I am not sure if these are applicable in your father's case, but it might be worth asking about so you are aware of an array of options.

Dr_WHO profile image
Dr_WHO

You may want to review the following paper which just came out this past June. It has a lot of people excited. They found that for new advanced cases of prostate cancer better results using a mixture of Lupron with Zytiga. Normally they start you out on Lupron and switch to Zytiga when the PSA goes up. I have been on Lupron for about a year. After going to a conference where these results were discussed my medical oncologist added Zytiga.

nejm.org/doi/full/10.1056/N...

JAOP profile image
JAOP

Thank you to all who have replied to my post. We are very appreciative of your excellent suggestions, realistic, and positive input. I now have a whole new list of questions for my dad's radiation oncologist, regarding my dad's treatment plan.

Can't thank you enough,

Rob

FightingforSmith profile image
FightingforSmith

He's in great hands and on the standard approach. Unfortunately, immunotherapy has not been successful (yet) with this type of cancer. We were almost sent down that rabbit hole, since the patent is expiring.

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