It's been a long journey of mostly ups since my dearest husband was diagnosed with Adv. PC in 2008 at the age of 66. Although hormone therapy was the obvious way to go if PC was outside the capsule at that time, his innovative RO at UTSW Hospital,Dallas noted his great health,diet,supplementation and attacked the lone metastasis with 44 sessions of IMRT which was risky but common practice today. It stopped the cancer's growth for 5 years. Since then, we have been through Provenge, Zytiga, Xstandi, Docetaxel (5 sessions), and he still is receiving Lupron and Xgeva. Out of all the treatments, only the Docetaxel's side effects became unbearable and I am quite certain he would have died if he stayed on it. So we made a difficult decision to stop chemo with or MO's support even though at that time we thought comfort care may be the only remaining option. We were so excited when he was then chosen for the Lu PSMA Vision Trial but he was later dismissed after 2 sessions because of PSA, scans and MRI which revealed increased cancer activity. A few weeks later, the RO provided 5 consecutive sessions of radiation(not Spot radiation) in his left pelvic area to attack the pain which was moving in. So hare we are. We have a great medical team, including palliative care support and are now confronted with another very difficult decision. Our limited options include, Jetvana(Cabazitaxel, Neosar,(Cytoxan), and/or Comfort Care and possibly a level 1 trial which our MO is not recommending. I have been reading this website for sometime now and realize that it is our decision as quality of life remains our highest priority. But we would appreciate any input that you may have experienced and think may be helpful about the side effects of each.
Cabazitaxel,Cytoxan or Comfort Care ... - Advanced Prostate...
Cabazitaxel,Cytoxan or Comfort Care after dismissal from Lu PSMA Vision Trial
Has he tried Xofigo? What side effects of docetaxel were life threatening, and aren't they side effects of cabazitaxel too? Mitoxantrone seems to be good for pain, especially when taxanes aren't possible.
Xofigo has been discussed but want to wait til pain appears. Docetaxel is normally well tolerated but he had all major side effects which intensified and no longer was successful by 4-5 sessions. Neuropathy was horrible and still some effects. As a result, he is much weaker now and body not able to rebound.Yes, Cabazitaxel same family and would need Nilaste. Can't take prednisone as have adrenal insufficiency so would have to go with hydrocortisone. Leaning strongly against it for those reasons.
Xofigo works best when used earlier
Its just my personal opinion and belief so please do not consider it advice ..you have to decide with your dear husband what you want to do.
Everyone of us are on this Earth for a limited time span. I believe we are not just physical bodies ...we are more than that. Mistaking ourselves just as physical self is ignorance. When body becomes so worn out and start giving immense pain and suffering, it is time to start the process of detachment and embrace a peaceful, pain free, calm and spiritually
rich way of discarding this physical body. Prolonging and dragging for another few days or months, the agony and suffering is not the way of a spiritual mind.
None of us can ever be immortal..."comfort care" should be in true sense "total comfort care" which means ZERO pain, ZERO anxiety, ZERO discomfort of any kind and and a dignified , decent way of leaving the physical self with lots of prayers and humility about our limitations and acknowledgement of the supreme force which gives life energy to all of us. Praying for blessings of peace to your husband and all loved ones and family.
Thank you Learnall. You sent a blessing to all who were able to hear the words of your beautiful post today. Body is weak, but Spirit is strong... better than the reverse in my opinion.
I have sometimes wondered if our current physical life is just an "intermezzo" in our spiritual life. We came from somewhere and we're going somewhere. Nothing to be afraid of. It's just part of the journey.
That is the greatest understanding. Universe is timeless and infinite but our brain is capable of feeling a miniscule part of that infinite, unending reality of which we are part of. After thinking about this most fundamental issue all my life,I have come to conclusion that we come from this vast "whole" whose tiny particles we are...and go back and merge with the same vast "whole" And this phenomenon repeats endlessly. In other words, there is no death...due to absence of memory ,we can not recall the past after our physical body is gone. We are all tiny part of the same invincible power ,some people call "God"
I would have said what you said but you said it first. Great Post.
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 07/20/2019 12:58 PM DST
Thank you for your response LearnAll (so appropriate. We have had the discussion with the palliative care Drs to make sure that comfort care will indeed be what we have requested verbally and in writing through all legal health documents. Quality of life for my husband as he is thinking right now is not to be measured in such criteria as "3 extra months of excruciating pain but at least you"re alive". I went through both my parent's deaths in hospice in a small town in Okla. and witnessed the many ways not to do it. Over that time I have learned a great deal about both palliative and hospice care. Two authors I highly recommend include Maggie Callanan and Ira Byock. Thank you so much for your insightful and heartfelt words.
I thought you were on a HealthUnlocked vacation, this place can get addictive brother!
All the best...
I can't imagine how difficult the present situation is for both you and your husband. I will refrain from making suggestions, as others on this site know much more than I do. But- I do thank you for sharing with us and providing us with information about another patient who has been fighting this disease for more than 10 years. That provides a measure of hope to many of us. I have been battling PC for 7 yrs and am hopeful I will make it to 10 yrs and longer.
Thank you
Yes, we have needed the following stars to allign in order to still be on this path. We looked far and wide to assemble the right medical team, we had the willingness to stay educated as equal participants and co-decision makers on that team, we have both been committed to good health maintenance both physically and emotionally, and we have valued the strength of our relationship to face the many challenges along the way. With these resources,the journey has not been so difficult for us until this past year. And having this website is so inspiring for all of us to be supported by one another . Thank you and good luck to you jfoesq.
If his mets are mostly or totally in his bones, you could wait a month for the LU-177 to dissipate and try R-223...It might work better on bone mets than the Lu-177..I did both Dose and Caba and for me, the Cabazitaxel worked better with fewer side-effects. No neurapathy with Jevtana, (cabazitaxel)..
What was hubby's Gleason score when he was diagnosed and what is his PSA now ? PSA doubling time ?
Remember... God is on your side...
Good Luck, Good Health and Good Humor.
j-o-h-n Saturday 07/20/2019 12:55 PM DST
GOD gave him the cancer to begin with, right ??
I don't know about that, but the medical profession wouldn't check for it until it was incurable. I don't blame God, just my PCP.
Yes, Ii really appreciate your humor j-o-h-n. We try to laugh everyday . Have you seen "If you're not in the Obit,Eat Breakfast", a movie on HBO? Carl Reiner,Mel Brooks,Dick Van Dyke,Norman Lear...
Thank you for trying to laugh every day... When I was getting fried (39 sessions) I was fooling around and laughing with the radiation staff, when another patient came over to me and said "you're the happiest guy I know who has cancer". So I looked at him and said "I didn't know I was supposed to cry"...
youtube.com/watch?v=-A62K4Q...
I have caught glimpses of that HBO special but not all of it, but thank you for reminding me of it, because here is (some of it?) on youtube. I just think these people are really funny. Thanks again and stay well and of course -
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 07/21/2019 6:33 PM DST
JB, My heart is hearing your heart break 💔
I believe you have done everything you can for now. Listen to God my friend and hear what he whispers in your ear. He will lead you. Praying for peace and direction! CK
Thank you Cj4j.
Jrb70, I don’t want to completely hijack your post, but my husband and I, I fear, are in a similar situation. I will have to post details separately, but want to thank you for your thoughtful post, so rationally stated—which is astonishing given what must be an excruciatingly painful process—and tell you that you are not alone. There are other hearts breaking for you and with you as we struggle to continue this journey.
Thank you for reaching out Mohopes. It helps to write sometimes so let me know if it helps you to connect.
To Radiate (the Prostate) or Not to Radiate (the Prostate): That is the Question.
Phase 3 trial 177-Lu-PSMA-617
Recommendations for ROs and MOs in Houston
What clinic trials have been successful?
