So I am officially castrate resistant. 3 years and 2 months after my diagnosis. Yesterday I got my results from my PSMA PET scan at Duke and it showed about 7 new spots all in my bones. My C1 (neck) one rib and the rest in my pelvis. I’ve been on Lupron since the beginning, zytiga, then Xtandi also for 3 years, and have had radiation to my prostate, and 4 other spots in 2019 and one more spot in early 2021. My Original diagnosis was all 12 biopsies positive Gleason 9, PSA 43 and 4 spots outside of my prostate ( that had radiation to). my PSA went to undetectable mid 2019-mid 2020. After a rise to about 1, early this year CT scan showed 1 spot on my tailbone that had more radiation. Which brings us to yesterdays news. For three years I have been very fortunate I feel, I have been able to exercise regularly running a few miles every other day lifting some weights, and I chose to do an all plant-based diet. I know that it’s just my choice but I know it can’t hurt and I’ve enjoyed the change and feel healthy for it. I am 49 years old and after my appointment yesterday it felt like I was told all over again how powerless what I’m doing is and it was really a punch to the gut. I see Dr. Armstrong at Duke and his recommendation is provenge, and, radiation to two spots that are worrisome the one on my neck especially and one on my hip to help prevent any fracture and then chemotherapy after a few months. But I wasn’t very encouraged by the outlook of chemotherapy. The plan is to do chemo for about six months and then hope that I can take a several month vacation before I move onto the next thing so a little overwhelmed and wondering if anybody else has been in this similar situation. He did say what I’m doing to keep myself healthy is helping but it sure doesn’t feel like it right now.
Thank you in advance for anyone who takes time to read this and offers me advice. I’m just a single father of three kids doing my best to be here for them.
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Oct18
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Although I have no advice, I have much admiration for how you have persevered, how you have done everything medically advised, and especially your own outstanding efforts to exercise faithfully & at a strong level. To read that you are only 49, is a shocker to me & heartbreaking. My husband is 78, was dx at 70. His struggle hasn't been easy, but nothing compared to you. May you continue to go forward with determination & commitment to your upcoming Provenge treatment & exercise. All very best wishes for your improvement!
Really sorry to hear about your progression and I can imagine how that meeting must have left you feeling. I would only note your Dr is right about what your doing for your health. I have learned to feel that what we do for our health is more about fighting the side effects of the treatment and our mental health than actually fighting the cancer. I would encourage you to keep doing what your doing as you said you felt good about it. That said if you feel you have been depriving yourself of things that bring you joy, stop.Just one mans opinion. Best of luck with success at whatever treatment you decide to proceed with. I hope you get over this bump and keep fighting.
Definitely, chemo+Provenge is an excellent combination. Why were you not "encouraged by the outlook of chemotherapy?" It extends survival and improves QOL afterwards. Also, talk to Armstrong about "triplet" therapy with Xofigo. A recent trial of docetaxel +Xofigo showed excellent results. Also Provenge is an ideal additive with both Xofigo and docetaxel.
As always, thank you TA! Maybe I interpreted it a little wrong, but it was presented to me that the plan would be 10 rounds of chemo (docetaxel) over 30 weeks, and after that if I'm lucky, a several month vacation before the next treatment option. I admit I feel I've been spoiled for 3 years because I have felt good, and am in the best physical shape I've been in since high school. I still work and am very active. I appreciate your encouraging insight and will certainly ask about the Xofigo.
I bet the exercise, whether or not life-prolonging, is a great psychological boost for you......I'd say keep it up as possible, but balance with other things that might have been minimized during your most intense exercise efforts, timewise that is.
I agree 100% with TA as usual. Provenge is a breeze and works much better in combination and earlier in the disease. Sooner the better. If you do Provenge PM me for some tips to make it easier. Schwah
Actually the key is to drink tons and tons of water for the three days prior. It will make it go much faster and smoother. For the first stage you must sit still for 3-5 hours. Should be 3 if you drink a lot. Fine a good Netflix show to enjoy. I watched breaking bad. Kept me engrossed.
Have you been tested for genetic mutations? When I was diagnosed at 53 y.o my doctor suggested that since i was diagnosed at a relatively young age I should do genetic tests which indeed found out I was BRCA positive.Knowing your situation may give you additional ammo (parp inhibitors)
Not just 'germline' but also 'somatic' to see if your cancer has mutations that are inroads for various treatments. My germline came back clean but subsequent somatic test showed I might be a good candidate for Keytruda.
Wow. Hard road. I’m so sorry. But give yourself some time, then get back in there. We’re 5 1/2 years into a highly metastasized diagnosis. Just started Jevtana, I think our seventh treatment. It’s working. They’re doing amazing things. You’re doing everything right. Keep researching. Keep making informed choices. Hang in there for those kids. We’re in your corner.
I had Lu-177 on 10th December ( very different point in the journey to you). I have no side effects at all however.. nor a clue yet if it’s helped but I went early ( pre chemo) to attempt to use low side effect treatment for as long as possible.
Maybe worth a read of the PSMAfore clinical trial, mine was done outside a trial as no trial was available.
From what I have read about Dr Armstrong, you are receiving excellent care. Still, you might want to mention the PSMAfore trial mentioned elsewhere in this post( as well as some of the other advice of course) if you are able to travel. Your attitude at this difficult time of your life is admirable and I hope the input and support you receive here help you …with hope and health.
Hi I am sorry to hear about your new spots. Hang in there and keep a positive outlook. You are young and have the children as a great motivation. I am pleased to read that you are eating all plant based food. My husband decided to do that after his diagnosis and it helped his hip pain to go away even before his ADT started. So he keeps to whole foods plant based and loves his food. He does not feel deprived of anything and tries to keep up his exercise regime too. Sending you prayers that the next treatment combo will bring your PSA to undetectable and help you to go to durable remission.
Thank you, I hope so too! It’s been challenging being disciplined with a plant based diet where I live in NC. There’s plenty of sweet tea, barbecue, fried chicken etc… but I know I feel good from diet and exercise. It’s worth it.
Wow, your right a punch in the gut is right, but look at it this way, you have had 3 1/2 good years. From the sounds of things it looks like they have a good plan, its really a trial and error, try this try that and anything they have in their bag of therapies. Everyone is different and everyone reacts different to medicines but they know what works accross the board. It will all come down to the good man upstairs. I don't know if your a believer but our help comes from above. The best thing is not to WORRY, I know that sounds simple but you know what I tell people I am not worried about anything, it will be what it will be and the only way out is thru it. Just keep calm and keep on getting treated if thats what you choose. Unfortunately Stage 4 cancer is not curable so its a fight for the rest of our lives and everyone is different . My theory is as long as you have a good QOL and you can afford it its worth it. As I listened, the other day, to a youtube video of the scientist for prostate cancer they have some additional things coming down the pike, so you might try clinical trials when your MO runs out of ideas. Our prayers go out to you, for good QOL, and wish you the best. Let us know how things go.
“The only way out is thru it” very well said. I am a believer but fall short sometimes as we all do. I know not one day will be added to my life from worrying. Thanks for your advice!
49 years! "I am just a single father of three kids doing my best to be here for them" This line of yours makes me so sad. Brother, now that you have joined this forum,, you will not be alone or single. You are with a wonderful supportive group. I see as usual some of our most knowledgeable, wise and experienced members have given you the required guidance for your future treatment plans. Hope all of us can save your life to be here as long as you wish and I pray for you and your kids 🙏.
I am very sorry this is happening to you at such a young age with three kids to look after.
My cancer situation, plant diet and exercise is similar although I am 10 years older (and I thought I was young for this).
I started ADT & chemo in November 2017 with various follow-on treatments but discovered my first bone met on C1 in July 2021. I then had two more sessions of Lu177 which reduced lymph node mets but the bone mets spread down to T4. The psychological impact of this is horrible - the 5 weeks waiting for a new follow up treatment were particularly tough.
Yesterday I started Jevtana and Carboplatin. Depending on the chemo results it's probably Provenge or Xofigo (if bone mets remain). I'm also going to look into any clinical trials.
Keep exercising as much as you can - I am convinced fitness does make a big difference in your ability to tolerate the treatments that will prolong your life.
Sending you much compassion, courage and support. Both chemo and Provenge make good sense at this juncture (now). Provenge is completely easy and valuable to have on your side. Cytotoxic (cancer cell killing) treatments “feed it” more dead cell antigens to provide even stronger immune response against cancer- synergy. Chemo is best tolerated and gives more benefit earlier rather than later. So consider getting after it and getting it done. Six cycles is the norm. And you can stop early if side effects are too severe such as peripheral neuropathy. For most of us it was not too bad to tolerate. You should also be on a bone protective regimen such as Xgeva or Zometa in my opinion. Xofigo, Lu-PSMA and BAT are all on the table. And genetic profile of the cancer could be valuable re other treatments. Cell free liquid tumor DNA from blood if no lesion is amenable to biopsy.
Your youth, your fitness and your love of family are all your great strengths.
If you search on the internet for a short time you will discover that heat (106 degrees F) kills cancer cells. It kills ALL cancer cells, regardless of type of cancer and whether castrate resistant or not. The problem is getting the heat to the right place and for the right duration.
In your case, the cancer is quite distributed throughout your body. The deeper it is from the surface, the more difficult it is to get the heat to it. The body regulates heat, usually trying to keep it near 98.6 F. But with modern devices that can probably be overcome locally.
You might try a sauna. I have purchased a small portable sauna which I use once a week. My mets are mostly on lymph nodes so they are close to surface. I think I have one spinal that is deeper and one on rib, both which I believe grew from lymph nodes. Yours sound like more developed than mine but I think you might try some of the things I do.
I set my sauna for 130 degrees for 25 minutes, sitting in it once a week. It seems to get most of my surface temperature up to around 110-125. I don't have pelvic mets, just back, neck and head lymph nodes. Of course the sauna does not cover my head but I use very hot showers on my head.
If I feel the tumors are getting out of control, by increased pain, I use a 2.5 pound weight from a barbell set. I heat it sometimes solar, sometimes in boiling water, sometimes with a small portable room heater. I then apply it with a piece of cloth to the area of concern. Usually I do it until it gets under 106F. I use a small thermometer to check temperatures. I try to keep it under 140F so as not to burn myself.
Shower temperature I adjust to the 110 to 120 F range and apply for 25 to 100 seconds, depending on how tolerable I feel.
I also use a heating pad which gets up to 150F if you lie on it. You need to kind of keep your focus on it and be sure not to burn yourself but after doing it for years I feel I never burned myself with any of my techniques.
So anyway I hope this helps to give you hope. I don't have castrate resistant PC but I have been stage 4 for ten years now and I feel fine. I also use adt and lycopene.
I'm castrate-resistant. They just sent my blood off to Tempus and found out that I have a BRACA 1 2 gene mutation and cancer should respond to Lynparza. I know very little about the subject but perhaps this information might help your situation if you have a gene mutation. I am currently on Xtandi for the last 3.5 years but PSA is up to 19 with the cancer growth going to the prostate. Bone Mets are stable. I'm 74 and have been treated for metastatic prostate cancer that went to my bones for the last 9 years. They plan on keeping me on Xtandi until I show symptoms and then switch to Lynparza.
Read my posts. If this interests you and you have the resources you need to check this out. Samitivej hospital in Bangkok was voted "Best Hospital in the World 2018-2019. If you want a contact there message me.
I am also a fellow patient of Dr Armstrong and just finished the 10 cycles of docetaxel that is being recommended for you. I am 62 and very active , not to your level , but found that I was able to get through it with just 2-4 days per cycle where I was “off” and had to take it easy but was never really “down and out “. Friends and family were amazed frankly. I did lose some hair but otherwise I was able to live normally through it and it was successful albeit would not say it was a home run.
Handled side effects well. Positive effects of chemo in bone met reduction and PSA began tapering off after treatment. You seem in a much better place than me though. I predict it will be a great success for you and wish you the very best !!!
Twin boys are 13, daughter is 18. They were 10, 10 and 15 at dx. I saw my daughter graduate this spring and took her to college so that was wonderful. I’m the one with a son on the autism spectrum and struggling and his brother is also in therapy. So I have 3 kids, 2 at home. (My daughter is home for the holidays)
So sorry to hear this - it seems younger men are more and more appearing here.
I won't give you anything specific in the way of advice, but I will suggest that you watch the 3 videos from Dr. Eugene Kwon from Mayo Clinic. The quick takeaway from his videos is: 1 - learn the extent of your disease as accurately as possible, you've taken a big step on this by having the PSMA-PET scan. 2- Attack on several fronts and as early as possible. He suggests that the usual route of cancer found, treat - PSA drops, time passes PSA rises, new treatment, PSA drops, etc., etc. "saving" treatments for later is the wrong thing to do. Attack it as early as possible and as hard as possible. Try to kill it dead so it doesn't spread.
There are a number of other discussions he has about some specific treatments and the results he's seen with them - tailored to the disease that the victim actually has - should be of some value to you.
While it may seem dark to you right now - watch Kwon, you might find some light at the end of the tunnel. He's certainly seen and treated successfully cases like yours and even worse.
I seem to be recommending this rather frequently - I guess I should post a thread on it:
I can't add much to what others have posted. Please know we are here for you. I know how fortunate I feel to have found this group. So please feel free to reachout if you just need to vent.
I was diagnosed in August 2020 with a Gleason 8, all twelve samples active, and a psa of 111. I have since been treated with Elegard injections every 3 months and Zytiga with prednisone every day. My initial I aging show 3 metastases, 2 on my spine and 1 on my left hip. I've also had external radiation on my prostate. Both my psa and metastases are undetectable. I have been a vegetarian for over 20 years and in the last year have taken up intermittent fasting as well as a high fat low carb diet. I'm hoping things stay as they are for a while.
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