Them bones them bones !: So dear... - Advanced Prostate...

Advanced Prostate Cancer

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Them bones them bones !

Roberthale7318 profile image
20 Replies

So dear Brothers ..

Saw the prostate cancer team at Duke University Hospital Friday .. here's a quick update.. "stage IV metastatic" with cancer in my left shoulder and possibly two ribs.. started on hormone therapy today (Lupron) . No significant side effects other than feeling a little flu like.

I Will need to get a CT scan of all the upper organs… lungs, liver pancreas etc on August 15... that will be the next big hurdle.. if positive for cancer than right to chemotherapy. If not then hormone therapy for six months..

Of course,I am stunned but I remain positive and determined!! As my angel guide, Molly said, "we are not just survivors we are "thrivers!"

There is still lots of hope for remission and 15 to 20% chance of "cure!" I absolutely love my doctors!

World class facility and Care!

Don't have a clue what I would do if Susan wasn't there in every way❤️ thank you BFF!!

Best to all of you on your journey !

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Roberthale7318
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20 Replies
Schwah profile image
Schwah

Ask them why they don’t add Zytega to the regimen. It’s shown to increase lif span by 40% over lupron alone. Also see my recent post re zometa and Celebrex. Shown to increase life span 22%.

Schwah

Roberthale7318 profile image
Roberthale7318 in reply to Schwah

It’s great to have such a “deep well“ To go to ! Thanks for the suggestions!

Trengle profile image
Trengle

I see Dan George at Duke and have full confidence in him and Sarah, NP...they are the best. I am on Lupron and Zytega and my PSA is coming down...150 when I started seeing him in January after starting treatment at Duke to 29 the end of July. I am so impressed with the entire team and facility at the Duke Cancer Center!

Roberthale7318 profile image
Roberthale7318 in reply to Trengle

Thanks! I feel exactly the same way… Great group of empathetic and super knowledgeable doctors! Dr. George is just amazing… Never had a doctor look me in the eyes so sincerely 😄 I go Wednesday for full body scan and see Dr. George the following Wednesday for treatment plan..

Stay strong and I may see you in the office someday ..

Blueslover profile image
Blueslover in reply to Roberthale7318

Good luck.

I am also a patient of Dr George

leo2634 profile image
leo2634

Ask them about Zytiga its not a wonder drug but has worked wonders for me. Best of luck Brother. Never give up never surrender. Leo

Roberthale7318 profile image
Roberthale7318

Thank you Leo I certainly will !!

EdBar profile image
EdBar

I was given a similar DX about four and a half years ago, I took a very aggressive approach for my very aggressive G9 PCa. You can click on my profile t see what I've done. PSA currently is undetectable and scans are clear of active disease. I am not cured however, but I am in a good spot considering where I started. I suggest you review the CHAARTED and STAMPEDE trials when deciding on a treatment plan.

Ed

Roberthale7318 profile image
Roberthale7318 in reply to EdBar

Hey Ed… Thank you so much… Great timing for side-by-side comparison… 😄

Caring7 profile image
Caring7 in reply to Roberthale7318

Things are changing -- but I'd ask about the benefits of early chemo per the above noted studies (CHAARTED and STAMPEDE). These came out about 4-5 years ago, right as my husband was diagnosed, and he went on all of the hormone stuff (Lupron + Casodex) but also did chemo right away. For aggressive (eg. starts at Stage IV with distant mets -- which you've got) -- the hypothesis was that early chemo went after the more aggressive cells right off. (Layman's terms!) Those studies were so positive, they released early. So I'd at least ask why they want to wait on Chemo given those studies. There might be a change with the early Zytiga (which is a new treatment plan).

Good news - as some above have noted -- after throwing everything available at my husband's cancer the first couple of years, he is doing pretty well. He had a good run on Xtandi and has switched to Zytiga now which is working to drive down his PSA. He is riding his bike, singing in an opera chorus and doing pretty well -- especially considering the dire diagnosis in March 2014!

It's so great that you are confident in your doctors and feel good about the care you are getting. So important.

Hope it all goes as well as it can.

tallguy2 profile image
tallguy2 in reply to Caring7

I agree 100%. Hit it hard with chemo (there's only one day in each cycle that I cannot go to work) , then go on abiraterone (all the while doing the ADT). This should buy us some time while the next cycle of clinical trials is underway. Stay strong, my brother in the fight!

Roberthale7318 profile image
Roberthale7318 in reply to tallguy2

Good morning and thank you so much for your encouragement to stay aggressive ! Your fellow cancer warrior ,

Robert

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

youtube.com/watch?v=pYb8Wm6...

Good Luck and Good Health.

j-o-h-n Sunday 08/12/2018 2:15 PM EDT

Roberthale7318 profile image
Roberthale7318 in reply to j-o-h-n

You’re awesome !! 😂

j-o-h-n profile image
j-o-h-n in reply to Roberthale7318

Thank you. That's what my wife and my girl friend say about me. 🏆🏆🏆

Good Luck and Good Health.

j-o-h-n Sunday 08/12/2018 6:55 PM EDT

Roberthale7318 profile image
Roberthale7318 in reply to j-o-h-n

Perhaps I should’ve said “daredevil !” 😄

Grizzly_Bear profile image
Grizzly_Bear

Robert,

I recently caught your posting - Them Bones, Them Bones. Sorry about you recent MPC diagnoses. Before I go on, I thought it best give you my background:

Date Of Birth – 02-10-44

Diagnosed with Stage 4 Prostate Cancer on February 23, 2018

PSA 18. Gleason 9. All 12 samples were positive, half with a 4+5 Gleason and half with a 5+4

Local scan shows metastasis to the bones with multiple lesions on both femurs, iliac, and sacral bones

Body Scan shows metastasis to the ribs and lumbar spine

CT of chest and abdomen shows lesions in lungs

Prostate Cancer Meds

ADT - Lupron – injection – 30 days – ADT (ANDROGEN DEPREVATION THERAPY)

Injection Dates – 3/9/18 – 4/9/18 – 5/11/18 – 6/13 – 7/13

Zytiga – 1,000 mg (4 x 250 mg) - 1 per day – started in April 2018

Prednisone – 5 mg – 1 per day started in April 2018

Alendronic Acid 70 mg – Fosamax – once a week – same time – sit up 30 min – started – June 2, 2018

I have been active all my life and am in pretty good shape right now (except for MPC of course). I exercise daily, alternating between walking, weights, stationary bike.

Although my diagnosis was severe, I have no pain at the moment. Of course the gaggle of meds have had a major impact and I am still attempting to adjust to all the changes, e.g., ED, hot flashes, emotional lows, etc. Also, I was advised to give him, curtail some of my hobbies - kayaking, jet-ski, muscle cars, road bicycle. Reluctantly, I have given these things up, but with deep sadness.

I am being treated at Duke as well, although I am not a patient of Dan George, I saw him for a consultation in April 2018. My opinion, he is the best. The only down side, best be prepared to wait a long, long time to see him if you are not his first appointment.

I am an ABC guy - ANYTHING BUT CHEMO and feel the same about radiation. I would like to know the treatment regime you follow and reasons you decided to include, exclude certain treatments, medications.

If feel comfortable contacting me directly via E-Mail, let me know and we will figure out a way to do that.

Best - stay positive, stay strong.

CHECK OUT MY CUSTOM GIF - PROSTATE CANCER - STICK AROUND A WHILE LONGER:

grizbear.biz/stuff/cancerbe...

Grizzly_Bear

Roberthale7318 profile image
Roberthale7318 in reply to Grizzly_Bear

Good morning and love the “grizzly bear” handle !

So generous of you to share your story as we seem to be in a similar boat… i’d like to hear more about your decision to be a “ABC guy“ So many recent studies for saying go hard fast.

There’s a link to one of the articles I saw on this site recently :

jamanetwork.com/journals/ja...

Optimizing Cancer Treatment Using Game Theory

Can understand your sadness of letting go of so many fun challenging sports !

Thanks for the reassurance about Dr. George… No doubt I will be spending a lot of time in his waiting room since he does tend to spend a lot of time with each patient… Worth it !

Also thanks for the encouragement about exercise .

I would very much appreciate being able to touch base via email so here is mine pif@earthlink.net .

Love The GIF 😄

Warmly,

ROBERT

snoraste profile image
snoraste

Wishing you the best.

Roberthale7318 profile image
Roberthale7318 in reply to snoraste

Thank you so much 😄

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