Hello everyone. Im updating my husband’s profile and hoping to find others that are in a similar situation. He is 62 years old and recently diagnosed with stage IV prostate cancer. His PSA was 885 and has too many Mets to count from his skull to groin area. The urologist started him and casadex and he has had one injection of Zoladex. In July he met with an MO, who has suggested triplet therapy of ADT, docetaxel, and nubeqa and we agree that this is the best option for him. My worry is that this has spread too far and concerned that the triplet therapy won’t work. My anxiety is off the charts and I’m constantly online looking for information. I would love to hear from anyone that could give us some encouraging stories.
Looking for Encouragement : Hello... - Advanced Prostate...
Looking for Encouragement
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Iber
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Good research paper to read :
prostatecancer.news/2022/10...
prostatecancer.news/2021/05...
prostatecancer.news/2017/06...
Thank you.
I think that's best treatment for prostate cancer. I would say do it.
Also discuss with your doctor
- Try to get benadryl iv before infusion that will easy to deal with docetaxel side effects
- Try to get zofran for nausea.
healthunlocked.com/advanced...
Very similar post to yours a couple of days ago - lots of lovely replies - healthunlocked.com/advanced...
Those very high numbers for PSA are scary but I'm learning that they are quite individual - some people have heaps of Mets with PSA under 10. And liquid radiation treatment appears to work better for men who have high PSA expression.
It usually works well:
prostatecancer.news/2021/05...
2.5 years ago PSA 1700 (not a typo) . Diagnosis: Stage IVb. Mets to multiple vertebrae and pressure on spinal cord - beginnings of gait problems. Lots and lots of intermittent pain (mostly from mets on spine and ribs). And "because it was too late" (although oddly a blessing) - no surgery or radiation.
So, time for system-wide hormone therapy only! (And at the beginning but only for a while, hydromorphone.) And the latest and greatest, triplet therapy! Fairly tolerable. And life is sort of normal now over 2 years later. (PSA < .01 so far.) I am fortunate to have responded well. So far so good.
If your husband has been offered triplet, aside from being a great idea, proven by multiple very large randomized clinical trials, it is because your husband is strong enough! A big success for you and your husband!
As many people on here will tell you, exercise! Both aerobic and resistance. It's not just good for you, it's bad for cancer! Directly!
BTW, it's very good that you are now working with the medical oncologist.
P. S. - (note added later) - I see I have mistakenly replied to our very much appreciated Tall Allen, instead of to Iber directly. My apologies to both Iber and Tall Allen.
Thank you!
I had similar worries at the beginning. My PSA was 935 stage 4 and mets all over. Decided on triple therapy and as of yesterday’s appt with my MO, I’m doing amazingly with a PSA of >0.01.
Check my profile for more info.
Cheers
Thank you!
you are attractive ( ask your SO if he doesn’t think so lol ) , intelligent and a very caring person. You have wrapped your husband with loving care and since you found this group / asking informed questions… clearly intelligent moves. Your hubby is extremely lucky to have you here advocating so strongly for him , while showing your intense love .
Any , ALL of us croakers would be blessed to have someone like you as a caregiver. Not all of us do.
Don’t worry about what’s over here behind the curtain Iberia, take this pocket watch and hold it near to both your’s hearts and revel in the knowledge that you are the best medicine your hubby could ever ask for. …. and have been since long before day one of DX. 🌹🌺🌼🌹
❤️❤️❤️
Btw: Xanax and / or hydroxyzine are both great for those anxious issues . Either can seem nearly miraculous at times. Talk to your pallitive care doctor, or medical team pcp for a prescription. Like all of us, you might need a little relief at times . It should be freely available.
we all know how uncomfortable and anxious is the period you are facing. Triple therapy is the right treatment. If successful it can add many years of life. I am actually at 7 years from cancer diagnostic.
Keep the faith. Focus on the treatment. Good quality of life and food. Excercice to decrease treatment side effects and keep the faith !
Triplet therapy is the best for now, and it’s definitely superior to what was available not so long ago. He will be given the gift of time, and during that time better treatments still will likely become available.
Meanwhile, in order to make the most of that time he will need to exercise probably more than he has in years, or nearly so.
For as effective as the treatment is, the muscle wasting and overall aging acceleration that it induces is very difficult-and dangerous-for most without intervention. Fatigue, hot flashes, increased blood pressure, insulin resistance, slowed metabolism and more all range in likelihood from possibly to definitely. The exercise mitigates and in many cases either eliminates or minimizes all of these side effects to a very acceptable level.
If exercise were a drug, it would absolutely be the very first one prescribed. Its benefits are even more wide ranging than most people realize. All other alternatives, supplements etc are nothing compared to it. Great luck to you both!
This is a scary and anxious time. I loved the statement: “He will be given the gift of time, and during that time better treatments still will likely become available.” I wish someone had tried to convince me of this! It is true. Your husband’s doctors will do their best to take care of him. You must take care of yourself. Your anxiety is a normal reaction, but only gets in the way of joy in your life. You can get anxiety relief in different ways: from religion, meditation, exercise or meds if you need them. This is a marathon, not a sprint. Our best to you.
Hello. I am from Canada as well. I live near Victoria, British Columbia. I was diagnosed over 6 years ago, age 55, stage 4, PSA 103, several mets in lymph nodes, groin, spine, and ribs.
I had an excellent response to zoladex and chemo. My PSA dropped to below 0.2. Most of my original mets became no longer visible on scans. I was put on abiraterone two years ago once my PSA started to rise a little and, again, had a great response. My current PSA is 0.02. I feel great, except for the treatment side effects but I've adapted my life to them. My oncologist is confident that I still have a few years yet to go.
I remember the emotional roller coaster I went through during that first year after diagnosis. It does get better as you learn more from places like this forum. I remember thinking that my life would soon be over but that is not necessarily the case. Hopefully you find some encouragement from my story. I hope your husband has a great response to his treatment too. Feel free to PM if you want to chat.
Hi. Sorry that you find yourself here but well done for supporting your husband. Top wife. I was also diagnosed with a high PSA of 1311 with widespread metastasis to bones and lymph nodes. That was in May 2020. My latest PSA <0.03 and scans clear. I completely get the anxiety. Exercise helps and I need to up my game here. I take some repurposed drugs and supplements, shown in my profile. Triplet therapy is now the gold standard of care. I've looked out on quarterly Lupron injections and daily Enzalutamide as 4 years ago, triplet therapy wasn't an option. Best wishes to you.
hello Iber. Omg. You poor things, I can totally empathise with you. My husband was diagnosed last March aged 62, stage 4 with mets in many lymph nodes, he was 62, he was offered triplet therapy or Enzalutamide with three monthly zodalex injections. He opted for the enzalutamide, but only because we needed to visit our 6 year old grandson in the USA who has leukaemia, we were worried that the triplet treatment would get in the way of this very important visit, however we would have chosen the triplet therapy if we hadn’t needed to visit him. Even so, the treatment we opted for is doing its job, my husband can’t be cured, but he’s doing really well the cancer is shrinking, psa is now 0.01 his prostate size has reduced and he will be starting radiation therapy soon, the lymph nodes are smaller too and overall apart from a few niggles he’d doing really well. 12 months on we are feeling much better and getting used to this awful situation, our anxiety has decreased and we’re feeling more optimistic, getting on with our lives, trying to enjoy each other’s company. I guess what I’m trying to say is, don’t give up, the triplet therapy is one of the best current options, and for him to be offered it is a good thing. I know it’s so hard, sending you much love and blessings…praying you stay positive and things go well..don’t give up!
Hi - Also a wife of Stage 4 PCa patient! DX'd Nov 2022m numerous bone mets from skull to knees. I could hardly breathe for 6 months, I was so stressed out. I promise you, that will get better as you get your feet under you. You will adjust to your "new normal". You have found the BEST place to be here on HU, in terms of both good information (pay attention to Tall Allen) and support. My husband Eric (Dunkiemac here) opted for triplet therapy (strongly recommended!!) and is doing very well almost 2 years in. There is lots of help here to navigate different treatments, including chemo. Try to remember to breathe. 😊
Such good news about your husband!
So many smart people here and such good advice that I can’t add to.
I was Gleason 9 Mets all over and 21 bags of chemo.
I want to stress exercise. My onc told me in 2015 that people who exercise regularly will live 50% longer than those who don’t. So I do and here I am flourishing after a decade of ADT. And Planet Fitness is only $10/mo.
Your husband is lucky to have you.
Peace and strength to you.
J
Thank you
You came to the right place!
Sending you love and strength. My father always said "focus on something to look forward". He always made plans no matter what the doctors told him.
He took small doses of medical marijuana gummy's to alleviate pain, nausea, and to sleep better so as not to take other meds with side effects- the combo of THC and CBN took away nearly all of the "high" aspect.
We went to concerts. Talked about the traveling, and made plans to do things with him.
Rarely did he talk about his cancer. Only right after appointments. And, then he talked about things he loved, and we encouraged those conversations.
Listen to music.
Do deep breathing and positive visualizing - there are many apps on your phone for free - instead of always searching about cancer.
I pray for you both, with healing, strength and optimism.
with love,
Dawn
Thank you
Agree. I read this daily so my husband does not have to as he does not want this to rule his life. So I just share things we should discuss with his MO that I learn here but not every day . He’s a lot older but will chime in that exercise so important. Limiting sugar in his diet. He likes iced green tea. Positive attitude. Being social and travel. Grateful each day. ❤️
You can check out my profile. I need to update. My husband was diagnosed in Aug of 2017 with Gleason 9, PSA of >677 (he had already had 2 weeks of bicalutimide before his very 1st PSA test. Cancer had been found during a TURP). He had mets on multiple bones. I wish triplet therapy had been around then. He went on doubket therapy which was new at the time. He's doing well- works, enjoys life- he's very active (currently 56 years old). Definitely hope with your husband!
I turned 60 next month. Diagnosed in January 2024 and started ADT in February. PSMA showed bone mets up and down spine and pelvis. Radiation therapy to two vertabrae with good results. I have had tremendous response to degarelix first, then Lupron, Xytiga/prednisone. PSA is undetectable. I attempted chemo but had a very bad reaction. Docs said 'skip it', since I am responding so well to the other therapies.
Follow the triplet therapy advice. You can always adjust later. Adjusting to ADT kinda sucks and everyone has different responses. I find it manageable and better than the alternative. Insure he eats better and keeps moving and exercising. Some lifestyle changes are probably in order to maximize benefits. Best of luck to both of you and keep using this site and taking advantage of this team for their real-time experiences.
Nobody can tell you what the outcome will be but you have to have faith in your doctor and hope for the future. I am stage 4 too although nowhere near the # of metastases your husband has. I went from tumors on ribs to no visible tumors. Next checkup is in about 3 weeks.
If you don't trust your doctor, get another one; there are plenty of excellent ones out there. Look forward, never back. Fear gets you nowhere.
Best of luck!
Wife here. I would do it with some precautionary measures.
my husband is also 62 and was diagnosed in Feb 2024. He had low PSA (never above 7) so we were told not to stress by the urologist. He has Mets to his spine and shoulder and lymph. He had 3 cycles of chemo and his lymph node is no longer showing up. His bone meta greatly improved. We have a scan next week so praying for good results. He is also on Nubquea and Lupron Depot.
My best advice is request a liquid biopsy (blood test). This shows what is circulating in his blood stream for prostate cancer. Unfortunately the cancer can have types and mutations. Also ask for his biopsy tissue to be tested (somatic) and a germline (spit) for family dna mutations. This will tell the doctors what type of animal(s) they are treating. Some mutations respond well to certain drugs and chemo.
I would also insist on him getting Nuelasta for his white blood count at chemo. Make sure he has Claritin to help with bone pain they can get from Nuelasta. Also benedryl and steroids during chemo infusion. Make sure he is hydrated and not constipated. Request Zofran too.
Hands and feet cool caps to avoid neuropathy. My husband had to stop chemo due to neuropathy and heart issues. He got to check all the side effect boxes they tell you can get. Not everyone gets them the guy next to us was golfing every day. Feel free to PM me with questions or if you run into issues during treatment. I was just there 3 months ago.
Also make sure he is excising before had including strength training. He may not be able to do it while on chemo.
Lastly mask during your infusions and in public settings. You don’t want him getting any infections as his body is already fighting the cancer. While my husband had chemo flu went through the infusion center and it can cause delays in treatment.
Good luck and please keep us posted!
Thank you
I am 62 and was diagnosed as Stage 4 two years ago. I also had mets throughout my bones throughout my body. I started triplet therapy but had to stop the taxotare after the second round because of severe reactions. Nevertheless, six months later I had no mets at all.
Yes, I am still fighting small mets that show up every so often, but the triplet therapy - even if limited for me -- certainly gave me a better start on this journey.
fellow wife, here. The people on this group have given me much hope and good advice. I know that weight you feel over your heart and that terror in your thoughts. But it is not the end for either of them, yet. We will fight and thank God, there are more options available now.
Hello Iber,I have not responded to any posts yet but have been reading and learning.
However, I can hopefully encourage you with my husband's story.
He was diagnosed last Dec (2023) with a PSA of almost 4000. His psma pet scan revealed innumerable diffuse bone mets also from the top of his skull to his thighs.
He was placed on Nubeqa, Eliguard and Zometa and began Docetaxel in January. He also had 10 rounds of radiation therapy to his sacrum and left hip because he was having marked pain.
After 3 rounds of Docetaxel his psma pet scan had improved but not as much as they hoped so they added Carboplatin to the Docetaxel for 4 additional rounds. In June the psma pet showed no distant mets, the lymph nodes were gone and there was marked overall improvement so, they ordered two more rounds of chemo.
His psa is now 5.5. We return to Mayo the first week of Sept for psma scan. He's feeling quite well with the exception of some mild side effects of chemo.
Sorry to be so winded, however I would say you have much reason for hope. Be encouraged, there are many on this forum that will say the same. You very much need to be your own advocate and do your homework.
My husband's first urologist ( Ithink) wrote him off and didn't even refer us to a medical oncologist. He was just going to treat him pallitavely with radiation.
We went straight to Mayo and have not regretted that decision. All my best and prayers for you and your husband going forward.
Thank you so much Hogger69, your story and that of others on this forum have lifted my spirits and given us the hope we need. I will keep all of you in my prayers.
Iber, this is a potentially dangerous suggestion from someone who joined a couple months ago, may or may not have cancer and is pushing an unproven treatment primarily used on animals. Do you research and be careful.
About 3 & 1/2 years ago my de novo metastatic Stage 4 Dx lit up the CT scan of my skull and skeleton like a Christmas tree. 10 of 12 biopsy cores were either Gleason 9 or 10(highest risk). Triplet therapy got me through until the cancer progressed to CR status, about 6 months ago. After 3 Pluvicto treatments my RO says my response to that therapy has been great. It hadn’t yet been approved by the FDA when I was diagnosed. Exciting new therapies are moving into trials now. There is hope.
I highly recommend that you each seek out cancer caregiver and patient support groups. There are many online options available; as well as in-person meetings in most large cities. Don’t struggle alone, get support from peers who share the same difficulties you’re now facing as well as from mental health professionals if you can also afford it.
Thank you.
I was diagnosed in 2019 stage 4 Gleason 9 I thought my life was over I had mets all over too Docotaxal and ADT did an amazing result
Keep him strong to undergo what's ahead
I believe the stampede worked for me and many
I know you can't help buy worry but trust the process and he will be around for many a year
Thank you so much.
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