diagnosed Dec 2022 with stage IV advanced metastatic prostate cancer spread to most bones primarily spine and pelvis - pelvis area continues to be an issue for me.
had 10 quick radiation sessions on some spinal drop tumours the Decatoxel x 10 rounds of chemo, ended May 2023 plus Firmagon (Degarelix) injections monthly and Nubeqa. Morphine drops for pelvic and hip pain to get sleep at night. PSA at diagnosis was 349 eventually dropping to 0.5 has started doubling over past 4 months and is now 4 - have had several other targeted radiation sessions on pelvis area without much success - the pain and continued fatigue one year after chemo i find very hard - i try to walk with friends as this helps me mentally - have new PET scan in week and fearing the worst - how do you guys deal with the fatigue to stay active, the fear and have you had any treatment that helps with the pelvic pain - someone mentioned a few days ago about some type of ultra sound targeted treatment - thanks buddies im just finding this battle so very hard and need some dupport God bless you clive
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Nyon
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Good morning Nyon, I sincerely hope that today is a good day for you. I read and re-read your post several times and I understand how you feel: the uncertainty, fear, helplessness, and even loneliness. I am so very sorry. Although I am new to this struggle myself, I sounds to me like you are getting good treatment; that’s encouraging. Walking with friends can be a great way to keep a positive perspective. I hope you are able to continue to do that on a regular basis.
Like you I fight fatigue every day, and the best way I have found to keep going is just to keep going. Before this miserable disease I was very active (especially for my age) with various projects and hobbies. Not so much these days. From time to time I really long for those days, but mostly I enjoy the life I have today.
Nyon, I hope that you find kind and encouraging support among your friends and family. Stay positive; learn all you can. My very best wishes for health and happiness for YOU!
Dear Robert thanks so much for your reply to my chat ive been struggling so much physically, mentally and emotionally compounded by acute fatigue and complete loss of appetite which originally appeared back in may 2023 at the end of my 6 round of chemotherapy.
I was very impressed by your courage and confidence and in particular "that you had a great appetite" - I am struggling to find some support and ways to help me regain my appetite which I found has been getting even worse facing a load of scans and tests later this week.
If any buddies out there can help me with ideas how they regained to or manage their appetite I would be so very grateful. Just to let you know that Im a Londoner who has lived in Switzerland 30 plus years and since being diagnosed in December 2022 with stage IV advanced metastatic prostate cancer whilst the direct treatment is good its so hard to get good help relating to the diet. I desperately want to put on weight as I have lost over 3 kilos in the past few weeks.
Thank you once again - good luck to all my fellow travellers everyone's help to me is a blessing at the moment.
oh my goodness… I lost nearly 25 pounds through my 4 rounds of docetaxal; nearly 15% of my body weight. So, I *completely* understand your weight loss concerns! My last chelmo was October last year and, happily, I have gained it all back!
Back in the early 1980s I visited London many times, ehat pleasant memories. I worked in England for a couple of years, staying mostly in Streatley, or Peasmore. Beautiful places!
God bless you so much everything you say makes sense - as they say in Zenism « everyday is a good day » and i know myself i need to find more gratitude 🙏 clive
Long answer: As I see only 4 responses, I thought I'd add a fifth from USA... here's hoping more replies are on the way.... normally, I would not reply as your SEs (Side Effects) are different than mine... your PCa (Prostate Cancer antigen) is also different... Me? Stage 4 [meaning it had metastasized... fortunately NOT to my endocrine system, but to my bones... bones better than endocrine system, I am told]...
My treatment: proctectomy (remove prostate) recommended but impossible. 28 days straight radiation, ADT (androgen deprivation therapy) Eligard injections (with Xgeva injections for bones) and Erleada pills every day. Goal is to get rid of testosterone. No testosterone, no cancer growth.
I am told that in my case, 1 in 10 have SEs... Well, I am the ONE and I have them all in spades.... Well, maybe not all... Unlike you, instead of weight loss, I had weight gain.... UGH.... and I have trouble keeping it off... I used to be Hercules! Now I am an overweight Barney Fife. I have many women's characteristics now, as the treatments are doing their job! We all have both hormones (men and women), just in different levels.
I have many SEs including no strength and no energy. I used to ride bicycles (could not jog due to shin splints arriving at the 2-3 miles mark) with my longest at 56+ miles in 2-1/2 hours (at 50 year of age). I am not sure I could even balance on one now. I can't walk long distance due to knees being bone on bone now. My ankles are a mess, so I am unsteady on my feet. I could go on.
Bottom line here: I am alive. I am lucky as the treatments are working. They don't always work for some. We have lost many posters here on this blog. (Godspeed) I get up each and every morning, say a prayer and feel blessed for the day. I tackle the stairs in my home with renewed commitment that I will get up and down as I wish (haven't fallen yet!). I kiss and wish my Wife the very best. I have 23 prescriptions now and OTC (Over The Counter), some for 'real' disease, but mostly for my SEs (including for my mental health). I just keep keeping on. One foot in front of t'other....
Don't know if this is helpful for you. I just wanted you to know that you are NOT alone. Many better, many worse. We all walk our own paths in our own shoes. Good luck with your path! We all walk beside you! All my best, all my prayers, all my best! Keep on keeping on....
Sorry to hear about your side effects Hot Rod. I am 73 and my Psa peaked at 5664 May 22. Down to 1 now. I also have my prostate and no chemo or radiation. My SE’s are very minimal now but I dropped Xgeva because it caused shortness of breath and my dexa scan came back normal. Minimal weight gain and still have pretty good muscle tone which has been increasing. I lost a lot of muscle the eight months I was in pain and on crutches. If you are having joint issues I suggest you check into curcumin combined with Celebrex. I recommend that if you don’t have an orthopedic specialist on board you get one. If you google curcumin and Celebrex combined you will find interesting reading, even for prostate cancer. God bless.
Albeit I also have low platelet count (averaged 85 up until a decade ago, and now it has been hovering between 40, which is the boundary for special treatment and 60ish. As a result, off Plavix for over a decade (no more 'blood thinners' for me!) and no more Meloxicam for me (only very occasional use of NSAIDs left). Orthopedics' says to continue Xgeva (for bone loss) and no knee replacements. Pulmonologist has my Dyspnea (shortness of breath) being treated with Incruse Ellipta daily and Albuterol when necessary.
On a bad day, when the pain wakes me up, I have old pain pills that still work well enough to get me back to sleep. They did check for apnea, and I am not treated for it. I sleep well when I'm not in pain and when I don't have too many bathroom trips (urologist has continued tolterodine and alfuzonsin er (relaxes prostate even though it's dead and bladder control). Some days I can sleep thru, others, not so much!
Hi Nyon, as others here have assured you, you are NOT alone in this battle. We each have our own, and we try to support one another. When I dropped weight like you, I was told to eat whatever I felt like. If it was ice cream 3x daily, eat that for now, whatever appeals to you. When you can, try to incorporate a meal replacement shake or protein shake, but you want one with significant calories. There are medications to stimulate appetite, but I have no personal experience with them: "Megestrol (Megace ES), dronabinol (Marinol, Syndros), and oxandrolone are FDA-approved appetite stimulants that can promote weight gain and nutritional intake when needed. Mirtazapine (Remeron) is an antidepressant that's sometimes taken off-label to boost appetite." I know of a couple of people who benefited from Remeron. Be sure to let your doc know you are losing a lot of weight.
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18F-DCFPyL PSMA PET/CT Scan Result
update on husbands radiation to pelvic mets
