Dad is fighting: Hey guys my father is... - Advanced Prostate...

Advanced Prostate Cancer

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Dad is fighting

Jeremyyyyyyy profile image
19 Replies

Hey guys my father is only 60 and has stage 4 prostate cancer that spread to his bones :( I am 27 and taking care of him as his advocate because mom has been struggling with undiagnosed mental illness and cannot take care of him. He is finishing up Zytiga after it lost its effectiveness pretty quickly. We are struggling whether to get him on Xofigo or try and get on a clinical trial that might be more effective? we need to make a decision quick to slow down this terrible illness. Any advice would be greatly appreciated! So much love to you all

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Jeremyyyyyyy profile image
Jeremyyyyyyy
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19 Replies
Vsahay profile image
Vsahay

What other treatments has he undergone for Pca?

Jeremyyyyyyy profile image
Jeremyyyyyyy in reply to Vsahay

This is my dads history:

PSA was 330 in May 2018

Gleason score 7-8 in June 2018

Bone scan shows bone and lymph node mets in July 2018

Lupron started July 2018

PSA drops to 12 November 2018 then starts rising

Zytiga, prednisone, Lupron started March 2019; PSA=42

PSA drops to 1.59 in September 2019, stays low until November 2019

PSA starts rising in December 2019

May 2020 PSA=18.4

dad is currently still on Zytiga, prednisone, and Lupron and his doctor is considering putting him on Xofigo combined with all of these.

Dad read a recent study that patients put on this combo have a much higher risk for bone fractures and is concerned.

Vsahay profile image
Vsahay in reply to Jeremyyyyyyy

It is not advisable to go for the xofigo and zytiga combo.He could try lutetium psma treatment or chemo which could help slow down the disease to a great extent.Any treatment after chemo would prove much more effective.He has also got option of enzalutamide.

Try to avoid the xofigo and zytiga combo.Xofigo mainly helps with bone mets and might not help with soft tissue mets .Hence, it is important to get new scans to determine the best course of treatment.

There are many options for your dad as of now and most probably he has got lots of time before moving to clinical trials.He could also be tested for genetic mutations which could offer him a few more treatment options.

If needed get a 2nd opinion.Your need to make the best choice for your dad.Is he getting zoledronic acid infusions for maintaining bone health?

Jeremyyyyyyy profile image
Jeremyyyyyyy in reply to Vsahay

Where can my dad get this lutetium psma?? we were under the impression this was only available out of the country or clinical trials? thank you for your help

Vsahay profile image
Vsahay in reply to Jeremyyyyyyy

Which country are you from?

Jeremyyyyyyy profile image
Jeremyyyyyyy in reply to Vsahay

in the USA

Zytiga failed me after 6 months. Had genetic testing, and found I was BRCA2+. As a result of precision medicine I was put on Olaparib PARP, and PSA has been undetectable for over a year so far.

Keep in mind that clinical don't always provide the medication for everyone, as they are typically randomized. Although I did participate in a trial (SIMCAP) where every participant had the same treatment.

Jeremyyyyyyy profile image
Jeremyyyyyyy in reply to HopingForTheBest1

thank you so much for this information, my father found it very helpful and interesting and we are going to find out his specific genetic variation. He wants to know if you got the Olaparib through your doctor or a trial??

HopingForTheBest1 profile image
HopingForTheBest1 in reply to Jeremyyyyyyy

My Oncologist was able to get "off label" use for me to have access to Olaparib outside of any clinical trials. I believe he applied directly to Astra Zeneca, the manufacturer.

I am also on Eligard and Xgeva.

Magnus1964 profile image
Magnus1964

Xofigo is a good way to go if he has multiple bone mets. Can you provide a little history on your father's treatments? It might help in providing some advice.

Jeremyyyyyyy profile image
Jeremyyyyyyy in reply to Magnus1964

This is my dads history:

PSA was 330 in May 2018

Gleason score 7-8 in June 2018

Bone scan shows bone and lymph node mets in July 2018

Lupron started July 2018

PSA drops to 12 November 2018 then starts rising

Zytiga, prednisone, Lupron started March 2019; PSA=42

PSA drops to 1.59 in September 2019, stays low until November 2019

PSA starts rising in December 2019

May 2020 PSA=18.4

dad is currently still on Zytiga, prednisone, and Lupron and his doctor is considering putting him on Xofigo combined with all of these.

Dad read a recent study that patients put on this combo have a much higher risk for bone fractures and is concerned.

Magnus1964 profile image
Magnus1964 in reply to Jeremyyyyyyy

Bone mets would be a concern. So the xofigo is a good next step.

Tall_Allen profile image
Tall_Allen

Docetaxel or Xofigo with Provenge would be good next steps. If any of his bone metastases are large enough and in a convenient place, it would be a good idea to get a biopsy on which to do histological, IHC, and genomic analysis (in that order, if tissue is limited).

larry_dammit profile image
larry_dammit

I was 66 when I was diagnosed with stage 4, my doctor went on the attack with this monster. After the first 2 weeks of casodex, I decided to go with chemo first while I was still strong enough to handle it, then went on to the pills , Xtandi for the last 36 months with Lupron them eligard and Xgeva. I’m now 45 months into this fight and feeling pretty good. I go in monthly for a blood test and my shots. PSA has been <0.05 since chemo. Talk with your doctor don’t wait to long on the actions. Fighting this monster every day 🙏🙏🙏

Hi Jeremy, you have come to the right place. These men and women on the site are all going through what you and your Dad are. So you are not alone. My husband has PC , still working full time so I am the fact and research collector. I know that you will get amazing educated medical insight from this group so I will not be Help in that .

My insight is for being a caregiver. Pace yourself because you have time. Find a good support for you too. Someone to talk with about your worries. Don’t let cancer take over your life - when it’s too much have something in your tool box to ease the monkey mind. Yoga, meditation and /or prayer 🙏 . I now never miss an opportunity for kindness or love or joy- that is the silver lining for me. My husband does a lot of different things too to stay positive so your dad will have to figure that for himself.

You and your dad will be ok

❤️🙏

I will think of you both and hope you will feel the love coming your way.

ladybird-91 profile image
ladybird-91

Hey Jeremy, I'm 28 also have a warrior dad and I'd like to send a big hug to you 💚 if you write more details I'm sure everyone will help you with suggestions, this group is so nice and kind. Sending lots of love and hope 🙏

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

Please provide us with more info regarding your dear Father. Location? Scores PSA/Gleason? Treatments to date? Treatment locations? Doctor's name(s)?. All info is voluntary but it helps us help him and helps us too. Thank You!

God Bless you for being an advocate caregiver for your Father.

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/06/2020 2:32 PM DST

Kcski profile image
Kcski

Sorry to hear about your dad, Jeremy. I am not an expert, but know the various drugs buy you more time, which is good. Timing and order definitely play. My dad (72) first did chemo, Docetaxel (6 rounds) and had great results! It was not fun, but so worth it! I would also try for a clinical trial because they are more cutting edge and imho offer better potential duration at keeping the cancer at bay. Daily exercise and a non processed real food diet imho are major helpers as well!

Jeremyyyyyyy profile image
Jeremyyyyyyy

This is my dads history:

PSA was 330 in May 2018

Gleason score 7-8 in June 2018

Bone scan shows bone and lymph node mets in July 2018

Lupron started July 2018

PSA drops to 12 November 2018 then starts rising

Zytiga, prednisone, Lupron started March 2019; PSA=42

PSA drops to 1.59 in September 2019, stays low until November 2019

PSA starts rising in December 2019

May 2020 PSA=18.4

dad is currently still on Zytiga, prednisone, and Lupron and his doctor is considering putting him on Xofigo combined with all of these.

Dad read a recent study that patients put on this combo have a much higher risk for bone fractures and is concerned.

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