Been on hormone injections4 month, stopped urinating blood and gore.....
feel better more able deal with diagnosis,learning deal with hormone side effects and the lowering of my testosterone
(this in itself is a biggy as I'man active outdoor 49y old).
I've came of enzalutamide due to it really getting me down after the side effects....
i can have chemo(doxetaxel)or enzalutamide or applutimide on top of my hormone injection???
im hopefully still able get radio therapy to prostate and pelvice.
BUT REALISTICALLY IS THERE ANY ADVICE?
im ok TODAY on just hormone injection,able to be present with friends n family.
all the other treatments seem to give shorter increases in lifespan and all come with cost of side effects? If I'm only on planet a limited period of time? How do I want to juggle it???
any thoughts would be greatly appreciated
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Mrtroxely
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You said: " I am only on this planet for a limited time." Tell me...do you know anyone who is on this planet for UNLIMITED time ? All human beings are vulnerable..and can die anytime...there are unlimited number of illness /accidents and other causes of sudden deaths. But, once we get diagnosed, this reality of "limited time on this planet" gets real and clear.
I notice that you are only 49 years old. I suggest you should go for a thorough investigation about how aggressive your PCa is . Numerous biomarkers, Scans, Pathology reports, Germ line mutation report, family history ,performance level etc . if analysed collectively ...it is possible to find out Degree of aggressivity of your PCa. Men with Prostate cancer can live from 3 years to 30 years. It depends on degree of aggressiveness and the wise choice of treatments and that plays a huge part ...so knowledge (right knowledge) not only empowers us but can give us longer life. This forum is ocean of knowledge ...you have to dive and collect the pearls from the bottom of this ocean. Best of luck.
Not enough info. Need to check ...PSA trend after ADT, ALP trend after ADT (make graphs)...Check Albumin, hemoglobin, Calcium, Ferritin, LDH, Chromogranin A, Scans: location and organs where mets are (or no mets). A lot to know and a lot to monitor and chart. You need to be on a "life prolonging mission." Vegan diet, Sulforaphane rich foods, Resveratrol rich foods, daily physical exercise are mandatory add on for this mission. Minimum or no animal fats is very helpful. Prostate cancer loves Fatty acids /saturated fats. These help cancer cells to grow and proliferate.
ALP has two components mainly...Half of ALP comes from Liver and Half comes from Bone. There is a test called Bone Specific ALP but it is expensive and insurance does not cover it. Otherwise Bone ALP is the most accurate measure of new bone formation. Logic is that degree of new bone formation indirectly tells us how much bone damage is happening due to bone mets.Desirable level of ALP is anything less than 100 Units/ Liter..
LDH is an enzyme which is released by tissues which are getting damaged/injured. So this measures how much tissue damage is occuring anywhere in the body. If cancer is aggressive ..it tends to cause lot of tissue injury/damage and LDH rises as a result.
Desirable level of LDH is 200 IU/L or lower.
A word of caution: If tissue damage is being caused by other disease then, it can be misinterpreted as coming from cancer tissue. LDH is thus a non specific marker. But in PCa which is causing damage to body, it certainly gets elevated to very high levels.
All what LearnAll said, I couldn’t say with better words. When I was DXed in 11/2017 I thought that’s the end of my life (see BIO). Today my PSA is undetectable (on Lupron) and I’m feeling well. I do my daily outdoor run, exercise with weighs and try the fight fatigue and loss of muscles as good as I can. Chanced my lifestyle and my diet,too. Still I will die someday. But what I know for sure: because of PC I will not die within the next year or more. Because of anything other - only God knows.
Pls read my BIO - I‘ve had it all: RP, 2x RT, chemo and ADT (Lupron only, no 2nd gen by now). I think I was lucky, despite high PSA I‘ve had only lymph node mets, which we killed with RT. Yes, now only Lupron and undetectable PSA, no mets.
All of the mainstream standard of care (SOC) treatments are available on the NHS, e,g, ADT, chemo, AR (Zytiga, Xtandi), radiation therapy but for some of the newer treatments e.g. Pluvicto (Lu177) you would need to go private (i.e. pay for it). It would be worth asking your oncologist if there are any clinical trials that may be relevant to your situation.
I hear that and understand, I refer to those tests,
genes, ADT, ALP trend after ADT (make graphs)...Check Albumin, hemoglobin, Calcium, Ferritin, LDH, Chromogranin A, Scans: location and organs where mets are (or no mets).
Are we able get access to this info?
In order to make a "life prolonging mission." Of an acceptable quality???
Some of those are provided as a standard part of regular blood tests, e.g. ALT, ALP, Albumin, Haemoglobin, etc. plus a number of other markers such as Creatinine, Potassium, Sodium, Globulin, Bilirubin, etc, etc. Also, MRI, CT & bone scans showing mets locations are provided. I don't know about genetic tests as I haven't asked yet, but if you get on a clinical trial you will likely get that and many other tests along the way. I suggest you ask your MO what is available to you. Good luck.
My husband is on the NHS and where we are the information is not available directly. We have a nice nurse who sends us copies of blood tests. Bone scan reports and CT scans were last taken in Jan 2022 (we were shown one on the screen on an appointment briefly and the other had the conclusion para. emailed to us). The MO does not check Ferritin, LDH, CgA. It is not SOC. We do this when abroad by paying privately. You have to do the best you can with the NHS but one could do with private and cheaper diagnostics available in every city and town. Access to information should be online by logging in but in a big Northern city in England, we cannot even book a GP appointment online. We have to hold on a phone listening to music for an hour to get to speak to someone who will give it. They have a way to go to modernise the system and make patients part of the team and work with them. This, however, does not take away anything from Learnall has put so neatly. Life is uncertain. Make the best of every day and situation.
Hi spw1, yes there are certainly limitations being under the NHS. I am only just starting this journey so still have a lot to learn about the disease and the best approach to take.
Regarding access to test results, I use my NHS login (nhsapp.service.nhs.uk/login) to access my GP health record but, our local surgery is not yet set up to give full access so I can only see allergies, medicines and immunisations. To access test results I use the Patients Know Best website (my.patientsknowbest.com) - but this may be unique to my local NHS trust (University Hospitals Sussex). This gives access to blood test results but I don't know about other tests.
When you get your other tests abroad, what do you do with them? Give them to your NHS MO or make your own analysis or ...?
Hi our local services are limited in their IT. When we do tests abroad we give them to the NHS MO and they do act on them but sometimes do repeat the tests (like PSA). PSMA scan was done in India and that showed progress, which they did act on by starting Docetaxel. It is another story that it is not working so far.
The best treatments available today are triple therapies involving primary ADT, Docetaxel chemotherapy and a second-line androgen drug such as Zytiga (Abiraterone).
All we can do is play the odds and look at what proven treatments offer us the highest life expectancy.
Unfortunately, some us have been dealt a crappy hand, but we have to play the hand we are dealt. Life is definitely a "limited quantity" and now we are all part of those who know and understand this.
So, I infer that you were diagnosed 4 months ago with metastases (how many and where?) and were given ADT+Xtandi. It sounds like your diagnosis came about because of urinary symptoms - do you know what your PSA was at the time?
Because you are young and have an aggressive cancer, it is important to treat it aggressively. Triplet therapy (ADT+chemo+either abiraterone or darolutamide) should be discussed and used before it is too late to be beneficial:
HiThe PSA was 19.5 now 0.9(first blood test for PSA after 3 months on hormone injection)
Think testosterone at 0.2
There's 2 mets in pelvice 1 that is sort of larger area that's weakened hip socket.
Triple hit was going be adt, chemo/or enzalutamide then radio therapy......
I chose enzalutamide (which I was to be on until it stopped working) but side effects had me not functioning and feeling suicidal 3 times a day, with other side effects.
I not spoke to my own oncologist yet?
I spoke to a stand in oncologist, then an oncology chemist who took bloods to issue the enzalutamide, then said for me come of enzalutamide for 2 weeks to see how I feel(I feel good)
I never get to see my oncologist (MO)
so it leaves me trying find my own way???
Looking through reems of words???
I'm considering chemo, but it's gonna be tough as I only just told my children who are important year in school.
I have bills/mortgage to pay, I'm self employed and finacial help does not cover those bills???
Whats your honest unbiased thoughts on a triple direction for me???
That -triplet followed by prostate radiation - sounds like an excellent plan.
Many men continue to work through chemo. Considering your age, side effects may be lighter. Some men wear a "cold cap" during the infusion to prevent hair loss - that may be what your kids and workmates notice.
Think I need get an action plan togetherPush for appointment with my oncologist.
Get a health routine firmly in place.
Does any body think CBD with THC has any medical Benefits for PCA alongside the medical, the physical health, good mental health, and food health already?
Don't fret chemo. For prostate cancer the chemo is not like chemo's you have heard about (colon, pancreas, breast, etc.) these are the chemo's portrayed to show, rightfully, the struggles of cancer patients.
Chemo in this triplet therapy has shown good results. Prior to evidence from trials it was thought chemo was a last resort and you would see quite old, PC cancer affected patients under chemo.
Also if for some reason you are one of the few that has a bad time with it you can stop getting the infusions that are done every 3 weeks typically 6 times over 4 1/2 months.
Very briefly I had chemo when I was 63.
Went into with the attitude that I would "not be a patient" get dressed every day etc.
Pretty much continued my from home business. Always experienced the "crash" about 3 days after each infusion.
Took short walks and tried to do frequently.
Had periods of days where I was shuffling my feet. Felt very fatigued.
Sometimes huffy/puffy breathing and heart pounding with physical exertion.
After each crash day there is improvement day by day sometimes feeling pretty good a week after infusion but definitely feeling good in the 3rd week before next 3rd week infusion.
The day after the first infusion can be rough. It is on this day that more than likely your WBC count will be quite low (neutropenia). You will be tested for it and then begin a injection given after each chemo infusion of something along the lines of Pegfilgrastim to stimulate bone marrow production of WBC's.
Had one or two bouts of diarrhea on the crash day after first infusion but not bad.
Had fecal impaction on the crash day of the 2nd infusion.
Had extreme restless leg syndrome and the recommended antihistamine Claritin did not touch it.
Prescribed Narcotic and that took care of restless leg syndrome. Timed the narcotic certain times of afternoon, evening, night, for about 6 days after each infusion. Then would not need again until next infusion. Had to time/coincide stool softeners with the Narcotic use.
The three pronged approached sounded good. I would have chosen chemo for you over Zytiga/Enzalitamide. We know someone on this forum who had chemo etc first and has been on Zytiga for almost 6 years and runs/walks/exercises intensely daily. Let your family be the motivation for you. Positive attitude will help to cope. This forum is there to help when MOs are too busy to answer questions. But make sure to know the nurses as they are a storehouse of knowledge and help.
He was 49 or 50 when diagnosed, Gl 9 or 10. I cannot remember. He has a very inspirational video on You Tube. He runs a lot. Went through triple therapy and then has been on Zytiga ever since for over 6 years.
I have nothing to add for treatment specifics you got excellent advice there, especially the triolet therapy. Find out everything you can too, as mentioned.
For side effects, a good, diverse diet of fewer calories helps and is important. The amount and type of exercise you do matters much more. Your description of ‘light gym’ and ‘few weights’ tells me you need to increase that. Especially the weights. The ADT drugs in particular will take muscle from you swiftly and relentlessly if it hasn’t already, so you must intervene with all you’ve got.
Whatever you’re accustomed to doing in the past is off the table. To thrive now requires more. Work around any specific injuries or health issues. It’s not easy but is essential for health and body composition, and you’ll feel much better if you commit to it.
The consoltant shook me up saying don't lift nothing heavy due to weakened pelvis and hip.
Anything more than bag of shopping was his reference????
So I hear you, with getting more 'on it'.
Muscle wastage is now happening, and that extra grunt from testosterone has gone!
Great advice thank you,
Aswell as alot info the other members have kindly added.
A question I pondered in 2004 as newly diagnosed with two metastatic lesions in the spine: is it not better to undergo chemotherapy with hormone therapy when the tumor burden is minimal and your body strong? I have never regretted my decision.
I don’t know if you ever consider prayer but it helps many on many different levels. To each their own. Prayer is as easy as talking on the phone. You just don’t need a phone. When I was in bed wearing a diaper and blood in around the toilet as well emergency rooms I was talking to God a lot. I kept asking for a healing or miracle. After radiation with Lupron and Xtandi and lots of prayer I just finished my 6 month drug therapy vacation with my PSA at 0.174 and my T 15.76. And I feel great!!!! It’s like I’ve never had PC. And the prayer chat never ends for me. I don’t miss a day that I get on the God prayer phone and give thanks. Until the day I die there won’t be a day that I won’t give thanks. Like I stated to each their own. Just sharing my experience. Cheers Bud Zero 🍻
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