Hope for some open thoughts and opinions going forward.
49y old, distrustful who will look out for my health and welfare, GP and practice is not fit for purpose. Hospital and cancer nurses have been awsome, but going forward I am fearful of the care im given....
I'm very independent been advised to take the chemo 6-9 sessions, then radiotherapy. (I'm already doing the hormone treatment) These will massively effect me and my life and what I can do with kids....
Really honestly thinking knocking it on head and see how long I can go on just the hormone injections,
living a quality of life this day today and everyday since I came of enzalutamide feels good and now feels more important than just surviving.
The idea of changing my physical state today to chemo and radiotherapy scares me, the fear is I'll waste good time doing other treatments, my experience of enzalutamide was grim...
(Really struggling see my way through to quality of life???) All thoughts and experiences??? Thanks guys
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Mrtroxely
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I would suggest that you look up on this platform how most men cope okay with Docetaxel. A few days of feeling rough. It also works for most. Most important is to exercise when on the chemo, even if you cannot manage too much you can try walking. My husband was not offered it early enough but T_A is right as anecdotally I have seen most men who have it early fare better than those who are offered it late. Look up Dr Kwon's videos on You Tube on different types of prostate cancer approaches - some requiring combinations of treatment and some not. It is an individual's decision whether to sequence treatments or to combine them but if you have an oncologist in the UK, they tend to be much better than GP or urologists for this kind of care. Our GP does not even prescribe the most basic things without the oncologist clearing it first. The GPs are overworked and have no specialist knowledge. If you feel lack of trust, best thing is to educate yourself or to have a family member put in the research and be with you. Make notes of visits with doctors if you attend alone as it is difficult to remember afterwards what someone said. When I first met a urologist who diagnosed my husband, he mumbled something about abiteraterone and few other names and we had no clue what these words meant. I read this platform everyday and learn something from others' experiences. Take a long term view of being able to be there for the kids and the chemo phase will pass quicker than you realise. Best of luck and hope it will all work well for you.
I was DX age 49 PSA 342, T4n1m1a. Docetaxl had occasional side effects however I ran two marathons (4-38 and 4-26) on weeks 13 and 15 of chemo so just keep going , exercise and doing family stuff is not going to hurt you. Since I was diagnosed 8 years ago they now know exercise makes you tolerate and react to docetaxl better.
i then had radiotherapy, no issues at all apart from a bit of bottom bleeding a year later but sorted easily enough.
i only make a few pence per book so its not about the money however I wrote a book "Dead Man Running" on Amazon, I believe that would inspire you to go live your best life.
8 years on I am still here, still running , still metastatic , some scores are moving the wrong way but I have had 8 great years when I was told I would only have 2 and I am not done yet.
I can’t tell you categorically what is right for you however I know that every human should make the most of every day no matter what distractions there are .
9/10 , the urologist said 10 , maybe 9, let’s call it 9 !
I have a rising PSA now and I fear that the night gleeson will do for me , bit that is not today . Today I live and can do things so I do things . This is what I did today :-
I’m 52 and Gleason 9 with lymph node mets and one bone met. I was diagnosed in May. I definitely understand the mistrust as I had a horrible experience with my initial diagnosis and the urologists I was dealing with. I got second opinions and feel much better as I’m moving forward.
I am on Eligard (3 month) and got my second shot a few weeks ago. I was on Zytega but changed to darolutamide then started docetaxel based on my second opinions and feedback from the great people here
I have my 4th docetaxel infusion on Monday. For me, docetaxel is actually not too bad. I lost my hair and am very fatigued for a few days after the infusion but that’s pretty much it. I’m still able to get out and exercise every day. I just go in the mornings before I get tired out Hydration in the days post infusion also really makes a big difference for me.
At this time, they are planning 6 cycles but may increase it to 8 depending on how things go . Once I’m recovered from that, then they will do radiation to my prostate
It’s a lot to process and I felt my urologists completely minimized the side effects for ADT and dismissed my concerns about ADT for many years (rest of my life?) in a younger man
Right now, I’m focusing on taking it one step at a time, getting through chemo and not getting ahead of myself.
I'm a 9. Been on Lupron only for almost four years. At least 3 distant bone mets. Also have experimented with a number of alternative things, and made major lifestyle changes.
i have 4+4 GLEESON out of the prostate into lungs and bones .This was in January.My PSA originally 370.Started hormone therapy then a few weeks later did Docetaxal chemo a total of 6 every 3 weeks .Finished chemo 4 weeks ago and feel a 1000 percent .I was a little lucky no real side affects.I worked 2/3 days a week .I would come home and sleep some times 12 hours .I just listened to my body ,if i needed to rest i did .Tried to walk 3 times a week and do resistance work.I am a first aid trainer and working kept my mind off it I am a very positive person.Now my PSA down to .1 .In a few weeks probably start on Zytiga or what my professor suggests.He told me i have had a very good result.On this site you will get all sorts of advice,Chemo kills off the cancer cells including the good cells.Most of these guys will give pretty sound advice I am 73 before cancer very active .Keep in touch i would be interested to see which path you take .Best of luck Brian
My husband was diagnosed at age 49 with gleason 9, mets to hip spine pelvic bone- PSA over 677. ADT and docetaxel immediately after diagnosis. 6 rounds if the docetaxel then switched to zytiga + prednisone and stated on ADT. It's been 5 years on the ADT Zytiga protocol and PSA continues to go down- currently 1.4. Bloodwork looks great and scans show no active mets. Last year he had two previous lesion on T4 show a bit brighter on scan. So did one spot radiation which showed great improvement on later scan. He does eat healthy (but doesn't stop from indulging on occassion!) and works out with weights to counteract side effects. Leads very active life with our kids and works full time. Surfs, fishes... living life.
He tolerated docetaxel well- kept hydrated and lifted weights during that time as well. Lost body hair and more fatigued but got through it and it helped.
Gleasons 8 and 9 across the board multiple Mets throughout my body PSA was 17 at start of treatment. The only treatments I've had so far are Zytiga, Prendisone,Eligard injection every six months, and Provenge infusions two years ago. PSA has been 0.1 since first month treatment. ADT is definitely a life changing experience and for some very difficult to deal with. My changes have been occasional hot flashes,weight gain, fatigue among some. But the alternative is death so im dealing with it. The key is to stay active, find good medical team to guide you through the fight,and Never give up Never surrender. Leo
I was a little older, 54 when given a similar dx. You can read my profile to see what I did. For me being aggressive in my treatment and throwing the kitchen sink at it seems to have paid off. I was dx in March 2014, they gave me 3-5 years, I’m still here, life is different but good, I’m grateful for everyday.
A couple of thoughts: these are more philosophical than the specific advice the many guys who have been through treatment on here can give you...(you've been warned!😇)
1) Start by evaluating your physical condition outside of PCa. Do you have a healthy lifestyle overall in terms of diet and exercise? Are your inflammatory markers (CRP, Alk Phos, ESR) low or high? No matter where you are on the spectrum, this is an area where you have the freedom to make a lot of changes for yourself. Making positive change here is a way to give your body its best chance to fight the disease. What is positive change? That is something you'll have to research and decide. My suggestion would be to read the posts of this gentleman healthunlocked.com/user/pjo...
In the comments, you'll find other members who share similar thought processes and can help provide guidance, thoughts and suggestions.
2) Keep an open mind on the Docetaxel. My Dad had a very compromised liver when he received his treatments and still tolerated it very well. There are a number of posts on this site about practical steps to minimize the side effects. If you are someone who is interested in combining alternative treatments with Standard Of Care, my Dad's naturopath used humic minerals to help reduce the negative effects of Docetaxel. There are other ways as well.
3) Being distrustful isn't a bad thing if you use it to collect information and make your own decisions. From my experience here, the men who do best are the ones who take the lead on their care, research, ask questions (both here, and of doctors) and choose their path for themselves according to the information they get back. Reading and asking questions here can give you a lot of guidance that will help you feel like you are choosing the best path for yourself and your life.
4) I'm not sure when you would be able to get genomic testing (one of the guys here should be able to tell you), but that might provide some further insight for you into what your PCa is like and how best to fight it.
5) We used to have a wonderful fellow named j-o-h-n on here who is currently taking a break. He used to ask everyone new to add their diagnosis info, treatment info, and age/stats into their Bio (it makes it easier for everyone to review when they go to offer suggestions), so I'm going to step into his shoes for a moment, even though they are too big for me! (He would have a joke for you too!) Please do consider adding that info 😄🥾.
I was 59 when diagnosed. Started on ADT, then chemo, then radiation, worked full time, missed a few days from fatigue. Started on Abiraterone and I was told ADT for life and decided to have the boys clipped to stop getting Lupron. I have a few hot flashes a day, but mostly don't notice them, except for my forehead sweating. I was told to hit as hard as you can in the beginning. Currently undetectable PSA and NED on scan. finger crossed.
I was never a big exercise fan, so although a bit active I was a fat caregiver when I turned 65 and was DX in 2014, 5+4 (9), PSA 50, doubling every 30 days. That was long, long ago in SOC. Was started on Bicalutamide (Casodex) then Lupron, 2 weeks later -- easing into ADT according to my urologist at the time. When Bicalutamide stopped working I went to Enzalutamide (Xtandi)
Research oncologist at Moffitt Cancer Center in Tampa told me I had 5 years, ten years at the very most and probably not 15 years. He further stated that the studies this information was based on was over 5 years old so that those numbers would probably be higher today.
After Lupron lasted 6 years I did Provenge immunotherapy and when my PSA began rising I went to docetaxel. It proved very toxic to me and I only lasted through 4 cycles. Also, I live on my own so I did it while trying to fix up my home as well as all the normal stuff of fixing meals, cleaning, bill paying, etc, etc., etc. I was also under a tremendous amount of financial pressure and the chemo brain slowing everything down was awful. YMMV
BTW, after 7 years of Lupron, I was just over the emotional swings every 3 months and, of course, hot flashes. So I had an orchiectomy (castration) in 2021 as everything was completely atrophied anyway. A year and some later, hot flashes getting fewer and much more stable emotionally.
I was exercising throughout, well until the chemo made me too sick. I'm back at it now. I managed to loose 30 pounds while on Lupron. I also, by myself, sold my house in Florida and moved back to NY in 2020 where I bought a 100 year old house and have been fixing it up ever since.
Turned 73 last May and right now am between treatments awaiting PSMA PET in mid-October. I feel great.
So, if an old man can make it this far you, with modern SOC and all the stuff in the pipeline, should have a long and satisfying life (unless you just give up and decide to be miserable -- or not to be happy). Be realistic in your goals based on the info you find here, find happiness wherever you can and the future will not seem so dim.
Gleason 9, extensive bone mets, abdominal lymph node mets. Prognosis was one and a half to two and a half years. That was five and a half years ago. I am still Hormone Sensitive, PSA 0.2 (I am in no way trying to brag. Waiting for both shoes to drop.) I did ADT and 8 cycles chemo, plus Xgeva. I remember dreading just the last 2 cycles. The side effects were cumulative for me. Now I wish I had done 10 cycles. Triple therapy was not available then. If it was, knowing what I have gleaned from the great people here, I would have done the triple therapy. I had neutropenia. That added 3 days a week of going to Kaiser each cycle. My legs ached like hell. Either chemo or Xtandi gave me foot neuropathy. A cross I still bear. Definitely better than it use to be and the Gabapentin got rid of 95% of the hot flashes. Was also able to persuade MO to add Celecoxib, 200 mg twice a day. For some reason MO prescribed Prednisone and I took it for a year and then told MO I was just refusing to take it anymore. That's my story, and I'm sticking to it.
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