Overwhelmed!

[Rainyday12]

My husband was diagnosed with prostate cancer two months ago PSA 623 and Gleason score of 9! It has spread to his stomach and chest! Started erleada and a hormone shot every three months! We really don’t know what to expect or even if we should be hopeful of any future time together! Any advice out there? Thanks

[Tall_Allen]

All you can do is see how he responds. There are many new medications and therapies.

[kapakahi in reply to Tall_Allen]

I've wondered if blood tests are being developed that would indicate which person's cancer will respond to which particular meds - seems like a viable area for research to be able match a person to a medication asap and without a lot of experimentation and delay. I guess the BCRA (?) test is what I'm thinking of, wondering if research is ongoing to pinpoint other specific tests.

[OldTiredSailor in reply to kapakahi]

My recent Decipher GRID report (Decipher Prostate RP) did tell me how well my particular tumor would respond to ADT, Radiation, Docetaxel) - very poor response to ADT, better than average response to RT, and excellent response to Docetaxel.

[Tall_Allen in reply to kapakahi]

For example, there is a blood test for the AR-V7 mutation. However, why not just try Zytiga to see if it works? With generic abiraterone, the cost of a month's supply is less than the AR-V7 test. PARP inhibitors seem to be active against mutated BRCA. Many clinical trials include blood and tumor tests for genomic or proteomic correlates.

[Magnus1964]

I can understand his and your feelings of devastation. As Tall-Allen said find hope in the fact that there are many more drugs that treat prostate cancer. Everyone responds differently to treatments.

I have been fighting prostate cancer for 27 years and have had a lot of quality life.

[cpcohen]

FWIW --

"Prostate cancer" is a whole class of diseases, caused by different mutations of prostate-cell DNA.

The only way to find out which drug(s) will work against a specific case, and how effective it will be:

. . . Try it out.

So Tall_Allen is exactly right:

. . . Take the drugs, and see what happens.

ADT (the "hormone shot") can have nasty side-effects. There's a book worth reading, about what to expect and how to deal with it:

"Androgen Deprivation Therapy: An Essential Guide . . . -- Second Edition" --

. . . by Richard Wassersug (and others).

It's available from Amazon, and probably in medical libraries, and some doctors' offices. There's also a website you might find useful:

LifeOnADT.com

If you have a local prostate-cancer support group, think about joining it. The men there (it'll be mostly men) will understand what both of you are going through, and can probably help you out.

Good luck, and stay in touch --

. Charles

[FightTillTheEnd]

Never lose hope. Most importantly, read as much about this disease as you can and educate yourselves about the different treatment options.

Must admit, it is daunting after diagnosis but it get easier (and less overwhelming) as you learn more about it.

[jdfamily]

I was diagnosed with prostrate cancer a couple months ago. After a lot of research and discussion with physicians I am having surgery next week. That seemed the best option for me as the cancer has not spread. As a part of my research I read a book called Surviving Prostrate Cancer by Dr. Patrick Walsh. Some very good information and hope for the future. Also we have a small group of men who are dealing with this and one has something similar to yours. He is taking medications via mouth and shots, and has to this point kept the cancer on hold. Hang in there, we pray a lot and know God is going to take us through this.

[Hidden in reply to jdfamily]

🙏🏼

[labrat1]

I am also in a similar situation. As the others have said, each tumor is different and may respond to different therapies differently. You seem to be getting the right therapy to start, and if it does not work, then you will be given another one. My only suggestion is that you get treated at a major NIH-Funded Cancer Center, and ask for genetic testing to see if there are mutations that could inform the therapeutic approach. They can also do advanced imaging. Also, please find yourself a support group for spouses - my wife attends one and it has really helped both of us.

[wuwei37405]

I had PSA of 138. Cancer in prostate, bones, and liver. Am taking lupron and enzalutamide. My PSA now down to 3. Don't know what to expect next but am hopeful. Good luck.

[Hidden in reply to wuwei37405]

Keep hope alive!

[Crusoe1]

Never lose hope. There are a lot of medications and therapies as Tall Allen emphasised.

[timotur]

Rainyday: please go over to the Advanced PC forum on this site. Lot's of knowledgeable folks over there, and many posts about Stg IV treatments.

[Rainyday12 in reply to timotur]

Thank you I will!

[SPEEDYX]

It is all very overwhelming at first but in time with a positive logical approach with treatment and attitude you may have many more years together making each day so special!!!...Pray for God to give you, your husband and your doctors divine wisdom.

[Rainyday12 in reply to SPEEDYX]

Thank you so very much!

[Hidden]

Welcome Rainyday12 ! The beginning is the hardest and most crucial step . Please don’t take to heart anyone speaking negativity to you about surviving this . Although you are now in rainy days this too will pass. Treatments can extend life . Many have lived with advanced prostate cancer for decades . I myself have had four years in remission from stage four and a horrible urology to start off with. I had tubes out of kidneys and a foley for a year and a half . During that time I did 8 weeks Radiation Therapy and double adt. I also cut all sugar,processed foods , animal proteins and dairy . The adt and RT shrank tumors in my urethra and bladder finally allowed me to ditch the tubes. He doesn’t have these complications thank god. I suggest that he goes to work out and exercise daily even if he didn’t before he should start now.. The adt drugs first take our muscle then in time our bones and teeth are depleted . I’m now in osteopenia and taking simple bones nutrients, .I waited until I got osteo to start bone nutrients ..I suggest bone nutrients now and some weight bearing exercise to strengthen bones now. Before they’re depleted . Most men don’t funtion very well without testosterone??Depends on the man . ?? How he will handle being chemically castrated ?? I was 53 then , now 58 and took castration too personal . Put my innocent wife thru hell the first three years . Try to comfort him and be prepared for emotional ups and downs . My wife’s love saved me . Love is the best medicine . Stay strong yourself . He will need you more than ever before. Welcome aboard this leaky vessel.. A lot of support here.

We have many beautiful souls both men and women here all searching for solutions to extend life . We can relate to you right now . We ‘ve all been there. It s like getting hit in the head with a brick .! In time you’ll have a plan and no looking back . We wake up to the brevity of it all . Life becomes more precious now . Take time to enjoy what you have always enjoyed together and grow closer . Those in the know here can answer just about anything you could think of asking . So Ask , seek , be his advocate and cheer him

Any way possible . .. Peace to you in the turmoil. Not knowing fully what’s going on and the fear of the unknown are both stressful and induce anxiety . Please Keep him positive ...🙏🙏🙏🙏🕊Scott

[Rainyday12]

Thank you so very much! Such positive response from everyone! I felt so alone and lost last week but realize now we are not the only ones going thru this craziness! I hope the posts are not deleted so that I can reread from time to time! Things can change so quickly! It seems with a snap of the fingers people you care about can be taken away from you, totally heartbreaking! But we will get through this together! Thanks again!

[Hidden in reply to Rainyday12]

The important part is the caring part for those we love. You are not alone . He will suffer some drudgery and misery but he has you by his side no matter what .. Together you can adapt .. Ask plenty of questions if you have them? Don’t feed into gloom or doom .. they exist in our minds if we let them . Fear is the worst part of the new diagnosis . By this time next year he should be in a better place and you’ll know more than you ever thought possible about advanced PC. For now a day at a time. Prop him up and get him thru treatments . We tend to hold our breath until good news appears . Keep breathing and living healthy . Good day .🕊

[Rainyday12 in reply to Hidden]

Well I must tell you today is a great day! My husbands PSA has dropped from 623 to 1.5 in less than three months! We are over joyed! Hormone treatment must be working! Thx!

[Hidden in reply to Rainyday12]

It has worked for me thus far also . We celebrate any good news. Thanks for sharing this!👏🏼👏🏼👏🏼👏🏼

[Rainyday12 in reply to Hidden]

Thanks for listening!

[Hidden in reply to Rainyday12]

Be well and be strong !😎

[SPEEDYX]

Good news ...time to relax a little

[Rainyday12 in reply to SPEEDYX]

Yes no kidding!

[Hidden in reply to Rainyday12]

Truth is this is a blistering disease from A-Z..but somewhere on the path take time to smell the flowers along the way . For now its a ball of stress..It should could get better ... dropping PSA should be celebrated .🥳

[pjd55d]

what all of these people said - about how devastating and frightening this disease is. To repeat:

1 you are not alone - this group is wonderful

2 the support of loved ones is as important ans any medicine - hold hands - touch often - prop each other up

Blessings to you both

P

[Hidden in reply to pjd55d]

🙏🏼🙏🏼