This forum is for PC suffering person... - Advanced Prostate...

Advanced Prostate Cancer

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This forum is for PC suffering person's only

Alexey25 profile image

This forum is very useful for me to learn about some new methods to fight PC. As to the personal feelings and emotions they are as individual as we are so could be educative but basically useless as each of us have to path your own life road.

I would also advise very seriously all the PC co-sufferers on this forum to prevent participation of their healthy wife's or other relatives from starting o joining the discussions as soon as they are not qualified oncologists. A lot of people are not determine the dramatic difference between essentially necessary support of a deceased person with absolutely unnecessary penetration into his/her life including his/her contacts with doctors regarding the health subjects. The only person to make any decisions is the patient and all the responsibility is also fully lies on the patient. Lucky patient is strong enough mentally , enjoying full support of family/friends and lucky to find really qualified doctor ( which is quite difficult).

I was diagnosed 7,5 years ago with PS 4 stage Gleason 5+4=9. I am grateful to the surgeon who was brave to operate me. His opinion was to extend my life for 3-4 years. One year later after the surgery my PC surely returned. During the last year's I had several Cyber knife treatments , ADT with several vacations,

2 cycles of practically useless Lu-177 therapy and recently 8 cycles of chemo. I still have my cancer in the abdominal lymph nodes and unfortunately in my liver. I can't predict my future ( evidently nobody can) but I have been alive for 7 years already during which thanks to my children I got 3 grandchildren.

We are alive while we are not afraid of our cancer. Cancer is like a wild beast seating in the corner and looking into your eyes. As soon as it will see your fear in your eyes it will attack so never be afraid and never surrender. I mean you personally as soon as you have any medical problem especially cancer. You should be brave and smart to go this road till it's and. During this journey ( hopefully long) you will need as much professional information and true support as possible but nobody will and can ride this road instead of you.

Good luck to everybody!!!!

150 Replies

Hi Alexey,

Some of the most valuable participants here have been the partners or children of those with PCa. Sometimes, a man with PCa is unable or disinclined to participate. PCa treatments can make participation difficult, as can age-related comorbidities.

-Patrick

Alexey25 profile image
Alexey25 in reply to pjoshea13

Hi Patrick, thanks for your comment. As usual you are mentioning exclusions Wich are only underlying the main pattern. To be able to give useful advise it is necessary to be a patient or a qualified doctor . Amateurs could give an absolutely wrong advise based on their emotions only. I fully agree that for some patients whose ability to react adequately is reduced need somebody friendly to understand and to remember what is necessary including useful recommendations of the doctors.

A person non suffering PC especially evidently women is just not able to give any advice based on the real experience and in most cases it is just reproduction of somebody's ideas. The source of such ideas could be just not trustable.

I always remember the reply of my German surgeon after my operation . I asked how many percents of the information available regarding PC is currently accepted by all qualified specialists ? After a long pause he gave his reply - about 20% while all the rest is either not confirmed by tests or just a personal opinion of someone.

Surely the above 80% are not all useless while the mentioned 20% also could be declared wrong in the future. This surgeon is operating 3-5 patients each working day and has 20 years of experience. He decided to specialize in the subject after his father died because of PC.

Justfor_ profile image
Justfor_ in reply to Alexey25

Can you share the name of your surgeon?

Alexey25 profile image
Alexey25 in reply to Justfor_

Hi Justfor, thanks for your interest. I nearly missed your question in this waterfall of shame on my head.ukmp.de/team/aerzte/urologi...

Hope you will find all the information you need. Just don't forget to switch to English if German is a problem. By the way Dr Oberneder is speaking perfect English and it was really a pleasure to chat with him.

Wishing you all the best. If you have any other questions just ask...

Lulu700 profile image
Lulu700 in reply to Alexey25

“ amateurs” 🤔 hmm

Lulu700 profile image
Lulu700 in reply to pjoshea13

👏🏼👏🏼bravo!

Right on....

This is not just a site for men with APC, as patrick says . OK we maynot be able to give advice,who knows but we sure can support all the men on here !!This forum is a wealth of knowledge, and I joined this site to help my Husband, don't underestimate us ladies !

Alexey25 profile image
Alexey25 in reply to 16starsky

Dear 16starsky , thanks for your comment. My only question is how many man are participating in breast cancer forums? The men who are not participating are not caring about their women?All the best to you and your family! My special best wishes to your beloved husband!

Lulu700 profile image
Lulu700 in reply to Alexey25

Alexy25 . Many older men are stoic ..

monte1111 profile image
monte1111 in reply to Lulu700

Many older men are drunk.

Lulu700 profile image
Lulu700 in reply to monte1111

Quite a few younger ones too! Alcoholism and drug abuse are are on full tilt .

monte1111 profile image
monte1111 in reply to Lulu700

Tell me about it. I'm on my way to the Arcade right now.

Lulu700 profile image
Lulu700 in reply to monte1111

🧐what type of arcade ?

Vsahay profile image
Vsahay in reply to Alexey25

If you are so bothered by caregivers participating in this forum and you don't feel like trusting the info available, you should definitely stay away from this forum and have trust in your oncologist. More than half the posts here are by the caregivers. Do you know why? because when a person is in such a vulnerable state fighting a deadly disease, he trusts his family.As a daughter, I have been deciding every aspect of my father's treatment for the past 8 years and with God's grace he has been doing well till date. He never questions me for my decisions because he TRUSTS me.

Caregivers are already troubled people who pray day and night begging to God to extend the life of their loved one. Do not trouble them more by your insensitive comment.

This is not a place for medical advice. It is for people to share their experiences .

This forum has helped so many people make better treatment decisions including me.

And yes, gender cannot decide if you qualify to advocate for the patient or not.

Lettuce231 profile image
Lettuce231 in reply to Vsahay

👍🏻👍🏻👍🏻💪🏻

MateoBeach profile image
MateoBeach in reply to Vsahay

👏🏻👏🏻👏🏻👏🏻🙏💕

Chris52981 profile image
Chris52981 in reply to Vsahay

Exactly what my dad does! I am his advocate 😊

So a man with BC shouldn’t participate in a BC forum?

You are so correct. I have had breast cancer and thyroid cancer. My husband's boss died of breast cancer and he was a man. My husband now has Stage 4 Prostate Cancer. Cancer sucks and you don't have to be a Man to understand what is happening.

Lulu700 profile image
Lulu700 in reply to p00vjor

👏👍

Currumpaw profile image
Currumpaw in reply to Alexey25

Hey Alexey25,

It isn't just wives that post here. Many sons and daughters do also. Some men will not seek anything beyond what they have been told by their doctors. Many doctors have a tunnel vision about their treatment being the best. The man that has a wife, son or daughter that seeks knowledge, has an open mind rather than being confined within rigid, unyielding practices is fortunate indeed. Never forget that health care is based upon the number of patients and $$.

I offered to pay travel, room and board for a young, promising urologist to watch a procedure, a treatment-- done--on me. He wanted to but he explained that the group he worked for would not allow him to take time off, a Friday and Saturday. Tunnel vision. This is what you, do it well, have the right percentage of successes, keep the $$ coming into the group, there is no need to diverge from that which we do here. Doesn't that sound much like a worker on an auto assembly line that bolts the left hand, front door on an SUV every day? Would that worker be able to take a vehicle of a different make that had that door damaged in an accident, disassemble the interior components, the upholstery, the electrical and weather stripping, repair the damage and repaint the door?

The majority of men, referred by their trusted primary to a uro take the advice of that one doctor. It ends there.

The men on this site that look for something different, maybe just complementary, are joined by the family members of men who just accept their future rather than look for alternate treatments. Sometimes these men are too devastated to seek an alternate treatment on their own.

Currumpaw

Lulu700 profile image
Lulu700 in reply to 16starsky

Kimx you’re the coolest.! ❤️peace to Clint

Dear Caliber, thanks for your comment. My only question is how many man are participating in breast cancer forums? The men who are not participating are not caring about their women?

GoBucks profile image
GoBucks in reply to Alexey25

Who cares about that?

Boywonder56 profile image
Boywonder56 in reply to GoBucks

👍

Lezzers profile image
Lezzers in reply to Alexey25

Do you know how many or how few men participate on breast cancer forums? Do you know how many men are supporting their partners (male or female as breast cancer affects both genders) but are participating quietly by listening to their partner as they relate conversations on those forums?

You commented

'I would also advise very seriously all the PC co-sufferers on this forum to prevent participation of their healthy wife's or other relatives from starting o joining the discussions as soon as they are not qualified oncologists'

So it is acceptable for an unhealthy wife or relative to participate? Are you a qualified oncologist? If not why are you commenting?

I know as much as, if not more, then my husband does about this condition, treatments etc, mainly due to asking questions & reading comments from groups such as this one. So because 'I'm a wife' you want to stop me from being able to take advantage of the knowledge that this forum is able to provide?? Shame on you!

As a last comment, I feel very sorry for you that you don't feel able to share what you are going through. My husband & myself are partners, his pain is my pain and I will do anything to help alleviate that pain, there's a word for that, it's called 'love'!!

Kaliber profile image
Kaliber in reply to Lezzers

Woooo hoooo , go get ‘em. 😂😂😂😂❤️❤️❤️

Lezzers profile image
Lezzers in reply to Kaliber

Sorry, but the post made me angry! Just to add to that, my heart breaks watching what this condition & the treatment is doing to my husband who never ever complains. So to be told I'm not welcome on a forum that I've joined to get help/advice for him p'd me off!

B8ssist profile image
B8ssist in reply to Lezzers

Lessers, I have to just add this. I am divorced and do not have a wife to support me. I’ve cried over that. I do get support from my sons and friends but often wish, uselessly, that I was still married for the support that a wife can give . But I trudge on knowing God is in control and He is my strength, fortress, etc. Caregivers are priceless in my eyes.

Lezzers profile image
Lezzers in reply to B8ssist

I was probably a bit too angry & should have calmed down a bit before I posted. The OP is also dealing with this very difficult condition, so I'm very sorry about that. I very rarely post here but I do read each post and most of the comments to try & understand things. I'm so sorry that you don't have a partner to support you with this awful condition, this is why groups like this are so important. The compassion and genuine care members have for each other is humbling & never more so than when a member has lost their fight xx

Lulu700 profile image
Lulu700 in reply to B8ssist

But . You Can play the bass .. God bless you brother🙏

Stoneartist profile image
Stoneartist in reply to Lezzers

Yes Yes - well said!!

Lulu700 profile image
Lulu700 in reply to Alexey25

I see the women as care taking and advocating for their men .❤️and loving them.

ellie2211 profile image
ellie2211 in reply to Alexey25

I'm sure they can participate in support group forums. That's what this site is. It is for everyone affected. I think you may need to find/create a new forum if you wish to exclude certain genders/groups

Realistic profile image
Realistic in reply to Alexey25

Your so wrong in your attitude and l know first hand my husband had pancreatic cancer lost 6 stones in weight and totally lost the willto live we fought his cancer together supporting each other throughout can't really remember a more dreadful time. When he'd had enough l helped get him through it and still is my boy he survived and 30 years later still going strong.My next battle was a brain tumour which is know managed with a programmable shunt after 3 Brain ops.

But life didnt stop there lm know battling with incurable ovarion cancer but with my husbabd helping every step of the way l am doing my best to win the battle again.

And don't think because your man bits have been altered taken away or altered that we

Dont know how you feel we've been through exactly the same different parts of course

With our woman hood's. I live everyday optimistic and will never be any different and if l can help anyone with my experiences l will

Yes my husband wouldn't come on here but that's his choice. But a lot of people are on here Men & women are here because of the support of each other were so lucky to have each other please don't knock it. SheilaFxxx

Alexey25 profile image
Alexey25 in reply to Realistic

Dear SheilaFxxx,First of all thanks a lot for your comment. Evidently apart from many "haters" you really read my post and not only it's headline which I deliberately made extremely provocative.

My main idea is that a lot of people are mixing and substituting things. Real love and support you are evidently enjoying in your family has nothing to do with quite common stupid attempts of many wife's to be present in each corner of their husbands' life( and vice versa certainly).As well as sharing some personal experience has nothing to do with sharing some stupid advertisements and fake news to say nothing about some gossips. Unfortunately there is many such "information" here and it is really resulting in a lot of wasted time while searching for some valuable personal!!! experience or information. That is why in this forum and in some other internet site I am readily sharing my experience with anybody interested.

During all my struggle with PC for the last 7,5 years I was always felt love and support from my wife, children, grandchildren etc . I am really grateful to all of them that they never tried to give me any medical advice as nobody of them is qualified to do it . I am also grateful to them for not asking each day how I feel. I believe that I am still alive for 7 years after my radical surgery ( the prognose of the surgeon was much less optimistic and according to the statistics only 28% of the patients with the similar initial data survived 5 years) just because thanks to my relatives avoiding stupid questions sometimes I don't even remembering about my cancer for many days.

Surely when I was supposed to make some difficult decisions regarding my health ( for example to choose between radical surgery and radiation) I spoke with my wife and my children as sometimes we need somebody to check our feelings and ideas . The same like any tennis player needs at least a wall to play. Luckily they avoided any recommendations so I have nobody to blame for the negative consequences of my decisions which are luckily few .

Surely I wish you and your family only the best, especially health, happiness and each day positive emotions. By the way I started to feel myself extremely happy person after I lived through the first emotional stage of the cancer suffering people which took me about a year plus about 6 month after my PC returned after the surgery about one year later . Now I am enjoying each moment of my life and each day is my personal celebration day. I am glad my family is absolutely supporting me in this attitude and enjoying my happiness and my cooking which is an integral part of my happiness. The main secret of happiness is to push away any thoughts about your cancer by substituting them with each day routine pleasant duties. Alexey

P.S . Hope to express correctly and clear my feelings as English is evidently don't my mother language.

michael00 profile image
michael00 in reply to Alexey25

I have known several men who participate in breast cancer forums and if it was my wife i would without question

Hey, folks. Save your breath. Alexey25 ain't listening. He's just talking.

Hi! I am full of attention. Answering members who are asking questions about my personal experience with different therapies . Trying to answer the members offering interesting original comments and ideas. Glad to see constantly growing number of likes.Looks like a lot of people are here for quite a long period and know each other . Now they are chatting with themselves in many cases about something very different from the main ideas of my original post.

I am grateful to everybody for your comments and I wish all of you and your families only the best!!!!

Fortunately, you don't get to dictate how others use this forum. I believe the opposite is true. You can get practical advice from your doctor, and it will be better than much of what I read on here - none of us are doctors. What is more important is to have a community of peers who understand your plight and who listen sympathetically. That applies to both patients and caregivers.

Lulu700 profile image
Lulu700 in reply to Tall_Allen

🙏Amen

Poowater profile image
Poowater in reply to Tall_Allen

Well said.

Well stated Allen , Bravo!

Lousab profile image
Lousab in reply to Tall_Allen

Absolutely right!

None of us should be here to give medical advice. This is a place for us to offer support and I try to direct people towards information that might be useful for them in their situation as well as sharing my experiences as an advanced prostate cancer patient.

You don't have to be a cancer patient to be able to share information. IMO, it's best to say things like: this is what I've read or learned about and it's something you can discuss with your doctor.

For me, it's a place to talk to others that are in the same situation that you are. I find that very valuable. One of the most difficult things for me was this overwhelming sense of being alone after I was diagnosed.

As for as caregivers on the forum, I applaud all the wives and daughters I see here who are learning as much as they can and advocating for their loved-ones with PCa. It does sometimes bother me these men are not themselves participating, but that's just how it is in some cases.

And yes, if my wife had breast cancer, I'd be on a forum trying to learn as much as I could and help her. Not everyone is that way though and I'm not here to judge.

I enjoy this forum and welcome sharing the road with others that are asking questions or trying to share their feelings. Even a little humor sometimes.

If this forum is objectionable to you, there is no reason to use it.

Best wishes

Darryl profile image
DarrylAdministrator

Feelings and emotions warm, brighten and nurture our community no less than sunlight on a field of corn. Prostate cancer affects everyone. It is a disease of death and a thief of love and happiness. Our male bodies hold our cancer and quake from our treatment; tears streak our loved one's cheeks no less than ours. We have agency over treatment choices, but not without resonance.I empathize with Alexey25 and am grateful for the honor of our community's support of his care. However, Alexey25's statement is wrong.

All who are concerned with prostate cancer are welcome here. All expressions of concern, including feelings, are welcome here. Indeed, until there is a durable, affordable, and tolerable cure, we all have prostate cancer. And we are here, together.

Kaliber profile image
Kaliber in reply to Darryl

Well said big guy.

👏👏👏❤️❤️❤️

16starsky profile image
16starsky in reply to Darryl

Totally agree !

Dett profile image
Dett in reply to Darryl

Thank you!

Lulu700 profile image
Lulu700 in reply to Darryl

Bravo 👏🏼 human kindness .

ellie2211 profile image
ellie2211 in reply to Darryl

🌞👏👏

TeleGuy profile image
TeleGuy in reply to Darryl

👏👏👏

Good on yer mate !

Kaliber profile image
Kaliber in reply to 16starsky

❤️

No one here is an oncologist.. I’ve suffered #4 treatments over six years. Maybe I’m qualified to give an opinion ? Not medical advise. I’d say 1/4 of our members or more are wifes daughters sons but don’t have pc. They have a right to seek help for themselves and the pc carrier . Many men won’t go on a social media forum talking about this . Living over 5 yrs after #4 dx makes us the fortunate few . IMO no one has the right to curb speech of those compassionate families fighting this beast.

Sob messed with the beehive.......

Kaliber profile image
Kaliber in reply to Boywonder56

Boy howdy 😂😂😂😂😂😂. Woke everyone up .

This is a band of warriors.....and warrioretz.......

Hi AlexeyMy hubby was diagnosed 2 years ago with a heavy cancer burden. Soon after diagnosis I found this site. I'm on this site almost every morning. Rarely contribute but read and read all the replies. There have been several treatments and symptoms that I've paid attention to, printed out for my hubby, things to ask the doctor about. It's been absolutely invaluable to me and us. He has no interest in looking online at any of it. His diagnosis shattered him. Us.

There is a PC caregivers hub available to us for reaching out and support but it's not very active. I go there also. But again, don't contribute much. Seems most of us are more in need of info.

I've been reading this forum for years and have gained more knowledge than you can imagine. My husband chooses not to read online forums nor does he question what the Drs say. This forum has given me immense comfort along with a wealth of information. When I accompany my husband to Dr visits and a treatment/drug is mentioned the majority of the time I understand what is happening and that is because of THIS forum. I don't write much but I read daily and this little corner of the net brings me peace. Alexey25, I wish you all the best on your journey with prostate cancer. Life is rough for many, and we are simply trying to navigate the hand we've been dealt.

Thats exactly how this forum works - lots of info and opinion (not necessarily relevant) which leads to better understanding and to better questions to the doctors. 100% positive - both for us with Pca and for carers.

I don't see the problem.

Ditto - This site is an invaluable source of positive energy as well as informed information and critical discussion.

Wish I’d found this forum helpful place to share 16 years ago when first Dx’d. Emotions are life. Keep them coming.

Lulu700 profile image
Lulu700 in reply to depotdoug

I found us three years after dx. I had no one to talk pc with . 👍👏👏

No clue where you are coming from my friend. But clearly your attitude against the wives and children who participate here got zero traction. The opposite in fact. Most of us are fortunate enough to have family and friends that help guide and support us. I get the feeling you do not have that. If so, perhaps we can all be here to support you, if you allow us. If all You want however is information, get it on the internet. No need to participate here.

Schwah.

When a group of people are going through similar problems it's important, even reassuring to share experiences. Everybody knows about breast cancer. We are more likely to suffer Pca alone except for groups like this. When someone falls there is someone to pick them up. And there is nothing wrong with the knowledge part.

Well said Kaliber,

you have the floor and my respect. I wish that there had been a forum like this when I saw different members of my family suffering.

But then perhaps I shouldn't say that, a sterile world, would only breed sterile people, emotions are what makes us human beings. Oh and by the way, I love my dog too.

Love to you and your wife, even though we will never meet.

Phil

All I can say is THANK GOD for this forum. When I was told I had cancer I did not know what to think or do, so I googled & there was HealthUnlocked & people replied from all around the world.Thank You! All you men & carers that are actually going through it, not just reading it & offering advice as the ONC or GP does.

Darryl profile image
DarrylAdministrator in reply to ARIES29

Thanks for your participation. Just as an FYI, the prostate cancer communities here are from Malecare, the USA based nonprofit. Healthunlocked is just the platform we use. We've known the Healthunlocked team for many years and consider them as friends and colleagues.

Don’t participate then - very easy solution.

I have to say Alexey that I have no problem with carers participating here and more than that I actually welcome and value it. They are very knowledgeable and have made it their business to be so. This site would be less valuable without them imho and I really don’t mind what proportion of men are on Brest cancer sites. If my wife had breast cancer I would be on them.

Not sure why you felt the need to post this but as someone whose wife is also fighting cancer I can yes I do participate and follow boards relating to her cancer. We support each other and part of that is watching what is happening in each of our fight. Sometimes we are overwhelmed by our condition and don't want to spend time researching or reading more about it. That's how we help each other. Its not about always looking for a "cure" or new treatment but looking at how others cope or support those who have the disease. Reading how women are feeling or what they want in support helps me support my wife the best I can and the same goes for her. Education helps make me a better care giver and same goes for her. I'm not sure where the problem is in that and why she shouldn't be here.

Thank you Great Post

And what an inspiration to us stage 4 guys

We all have our journey without friends and family,s support it would be much more difficult to navigate the way forward

Strange enough they are all optimistic

They don't understand I won't beat this

Maybe a bit of denial that tends to run in the family lol

Bless you Alexey

Hey Alexey25!

Just one more point from me. Do a husband and wife both participate in buying the family home together?

Do parents instill their values in their children? Do parents guide their children as they go through childhood and become adults because of the love they have for them?

Family members participate on this site because of the love they have within their family.

This discussion should end now. It is non productive. I have never written anything as strong as that but the love of family members and desire to help each other should never be excluded.

Currumpaw

I have to respectfully disagree. This is a shared journey. Sometimes the family are the only ones who can reach out in behalf of the patient. For example, in my support group last month a woman from Georgia reached out in blind desperation for her father who was in a hospital in Tennessee. He was in terrible pain with his bladder cut out, with a new stoma, a stoma bag and stage IV PCa. This man could not speak for himself. Happily he is a bit better this month and was able to join our Zoom support group and speak for himself. He still needs the support of his more able daughters who are adept at the internet while he isn't. It is a shared journey.

I join in with the opposition!

Family participation should be highly encouraged!

I just wish someone, anyone in my family would participate.

I am married with three grown children, and I am the only one on PCa forums.

I am so very happy that all these caring folk are participating in their loved ones medical life!

Bless all of you!

I love all of you, keep doing what you do!!

Alexey,Couldn't disagree with you more. I am Stage 4 metastatic for 10 years. I have learned to skip the posts that I don't care to read. Everyone's input is important to someone on this forum; maybe not you, but others. I'm tired of our government, and neighbors and social media telling us what is appropriate for me to read.

Alexey25 profile image
Alexey25 in reply to CharlieBC

Dear CharlieBC,

"I'm tired of our government, and neighbors and social media telling us what is appropriate for me to read."

The last sentence of your comment is actually the essence of my original post . I deliberately named it in this extreme manner to attract attention and to see the reaction. I am glad to see a lot of comments . Most of them are from "haters"( I am afraid most of them didn't bother to read and to understand the text limiting their attention with the headline only). I am proud to see also 7 likes as it is not bad for a post left only one day ago. I have even one follower who is evidently female which means for me that the subject is interesting for every kind of people , healthy and not healthy, men and women...As many people are writing in their comments that this forum is for everybody and for all comments I believe I just described a very small part of my experience of survival and my general thoughts . I believe nobody is doubting my right to do it and I wish everyone health and happiness!

I am really glad you survived for 10 years. I can only hope to beat this "record" and surely wish you as well as all the suffering people to beat as many live length records as possible!

Thanks for your comment!

Greetings Alexey25, My husband was diagnosed with advance PC in May of 2020. The first sign was excruciating back pain, which revealed it to have already metastasized. He required immediate back surgery at the height of covid19. He is not one for social media and forums, and he follows orders of his onc. Since the surgery he has undergone a litany of treatments. Some have helped, others have not. He is the stoic type, punctuated with a dark and often very funny sense of humor (which he often presents to his doctors and reiterates to me afterwards).

We knew next to nothing about this disease. Most of all we did not realize how aggressive PC could be. I found this forum about a year ago. I read almost all the posts almost every day. It has offered invaluable information about treatments, clinical trials, coping strategies. Also many members have update us as to the efficacy of such treatments. As you know, they also laugh and cry here. Sometimes they argue, but for the most part they are made to feel welcome.

I have never given advice here, but I have sought it and people have been very generous, giving me technical information and personal information relating to PC. Some of those people are no longer with us, which has been a stark reckoning--for all of us. I am sorry you resent women and other family members (some sons have also come here) seeking information. As to your question about how many men participate on BC forums, I don't know--nobody else here seems to know either. So you'll have to do your own research. That said, It seems you think you already know and are really just trying to making a point-over and over- as a to justification as to why I should not be here seeking information for my husband.

Until asked by an administrator of this forum to leave I will remain and will continue to seek advice and share information (just as you did about your Lu177 experience and your own coping devices). You can simply skip over the posts written by women if you prefer. Mine included.

Nevertheless, I do wish you good luck on your personal journey and I hope, for everyone's sake, doctors find a cure for PC and other forms of cancer.

-Elisa

monte1111 profile image
monte1111 in reply to Lavender22

Well said.

I believe our caregiver family members have a more difficult time emotionally with our diagnoses than we do. They are just as invested in our wellbeing as each of us are and deserve to be a part of every aspect of our healing journey including being allowed to be a part of this group. Not sure how or why you developed such an obtuse insensitivity or lack of perception but you are, as the comments indicate, way off base.

I have to wonder if you, Alexey, are a TR O LL.

Why would anyone try to exclude family from a SUPPORT forum.

The point of SUPPORT forums is to give people SUPPORT.

Family does this better than practically anyone else.

Lezzers profile image
Lezzers in reply to alephnull

I think you could very well be right!! If you read the OP's reply to Charlie BC he says he posted for a reaction & we're all haters!

gregg57 profile image
gregg57 in reply to alephnull

I agree with your assessment, looks like a troll post to me. OP is a non-participant in the forum and has no other posts.

My wife goes with me to every appointment at Onc Clinic.

I have noticed that those who are around us suffer the same worries, anxieties, and other forms of stress as they watch us. To not include them in the process, I feel, would be wrong. And should end of life come to me before her/kids, they are left with survivor's guilt.

These are my opinions based on how I was raised and taught. May not work for all.

Hey Alexey25,

Someone just commented that they believe you are a troll.

Then you responded and confirmed you are a troll.

“Dear CharlieBC,

"I'm tired of our government, and neighbors and social media telling us what is appropriate for me to read."

The last sentence of your comment is actually the essence of my original post . I deliberately named it in this extreme manner to attract attention and to see the reaction. I am glad to see a lot of comments . Most of them are from "haters"

Your term “haters” is a big clue. It comes from those heavily involved in twitter, Instagram, etc. RANTS. The most common straw man response to anything they disagree with.

I am however surprised at your lack of defending yourself and lack of trying to stir up more “hate”.

Maybe you have the slightest bit of humanity and feel guilty about what you have done?

Please reserve your hobby of participating in intentionally divisive rants to the locations where you obviously do so. NOT HERE.

To all in the group...including al25....because i believe you a warrior to....i just saw the number responses and ive read all......i had a good cry....im sure it was the adt....cuz real men dont cry.....just want to say wow....even though this is technology.......i feel immense love......ty all for being here....we will all need each other some day.....keep up the fight.....kevinPs maybe daryl can confirm but this may be the most responses to a post......

Darryl profile image
DarrylAdministrator in reply to Boywonder56

Not even close to the most responses to a post, but good that many in the community replied.

Just a THANK YOU Alexey25 for going fishing on a *trolling expedition* and reeling in the *catch of the day* with the responses coming back extoling the virtues of HU and the return of j-o-h-n

Darryl profile image
DarrylAdministrator in reply to addicted2cycling

What do you mean by that?

Sarcastic THANK YOU but his post MOST DEFINATELY brought out the BEST OF HU.

Maybe hes not a warrior.....trojan horse

I was looking into the LU-177 treatment. I thought that the LU-177 was supposed to be a great treatment for PC with Mets. Perhaps it is overrated. Any thoughts anyone who has had it. I am also using a Rife machine to try & kill cancer.

Alexey25 profile image
Alexey25 in reply to Kabbalah

Dear Kabbalah,I had 2 cycles of Lu-177 out of the standard 4. The reason to terminate was very simple - according to the ultrasound control they had zero effect on the left very metastasis ( it was anticipated) and zero effect on the abdominal lymph nodes ( for most of the people the strongest effect was exactly for lymph nodes).

As an excursion following the advise of my oncologist I made Lu-177 before chemioterapy. To do it I was forced to go to the only German clinic which made this exclusion ). So due to the lack of the effect I switched quickly to chemo and in June completed 8 cycles of Dicetaxel.

I spoke with a couple of persons who had all 4 cycles. In both cases there was relatively quick response ( in both cases metastasis in lymph nodes became invisible for PET PSMA) but in one case there was nearly zero effect on bone metastasis and in both cases approximately two years after the Lu-177 treatments everything returned to pre-treatment conditions. So looks like this therapy could be a time buying temporary therapy . It's advantage are relatively light side effects while the main disadvantage is evidently the price.

I would be glad to unswer any additional questions.

Wishing you all the best!

j-o-h-n profile image
j-o-h-n in reply to Alexey25

Please tell us your bio. Age? Location? All info is voluntary, but it helps us help you and helps us too. When you respond, copy and paste it in your home page for your use and for other members’ reference.

THANK YOU!!!

If we gave you a hard time it's because you came on strong and hit a nerve....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 8:32 PM DST

We have a new member named Alexey

who turned out to be a pain in the assxey

he wants co-sufferers to flee

and suggests sufferers take a knee…..

Welcome to America......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 1:23 PM DST

depotdoug profile image
depotdoug in reply to j-o-h-n

Well I can not take a knee, meaning my knees can’t take me on knee posture.

Super polyneuropathy I have.

But I’ll exercise on that thought tonight.

What a G r e a t attitude positively speaking j - o - h - n.

j-o-h-n profile image
j-o-h-n in reply to depotdoug

Shoot!!! There goes your professional football career......How about a career installing wall to wall carpeting? You can always get SSI by claiming you can't work due to Kneemonia......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 5:33 PM DST

depotdoug profile image
depotdoug in reply to j-o-h-n

Poly Neuropathy means i think five(5) polys. Polly want a cracker or Polyneuropathy? SSI yes disabled but still fighting this PCa battle 2nd time on ADT plus chemo med drug Abiraterone.

Thanks j - o - h - n

j-o-h-n profile image
j-o-h-n in reply to depotdoug

Poly = Many (from the Greek word Poli). I suffer from peripheral neuropathy.... feet (from toes to ankles)....I take one tablet of Neurontin/Gabapentin 600mg twice a day. Does help.

Hopefully your round 2 you'll win by knockout.,,,

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 6:31 PM DST

Boywonder56 profile image
Boywonder56 in reply to j-o-h-n

Damn .....heeeeees back

j-o-h-n profile image
j-o-h-n in reply to Boywonder56

Where is he?----------------

New patient to shrink? Dr. I think I'm invisible..

Shrink "Who said that?"

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 6:59 PM DST

TomTom1111 profile image
TomTom1111 in reply to j-o-h-n

Anymore cracks like that....

j-o-h-n profile image
j-o-h-n in reply to TomTom1111

OK oldie........... Confucius say : woman who flies plane upside down has crack up...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 7:12 PM DST

TomTom1111 profile image
TomTom1111 in reply to j-o-h-n

Teacher Smith: Johnny, if you had $5.00 and you asked your father for $3.00 more, how many dollars would you have?

Little Johnny: I would have five dollars…

Teacher Smith: You don’t know your arithmetic, Johnny…

Little Johnny: You don’t know my father, Mrs. Smith.

j-o-h-n profile image
j-o-h-n in reply to TomTom1111

Cute..... sounds like me (a cheap bastard).....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 7:26 PM DST

TomTom1111 profile image
TomTom1111 in reply to j-o-h-n

Man walks into a pet store and notices a dog by the entrance and asks the store owner if his dog bites. The store owner replies "No". The man goes to pet the dog and it bites him. He says to the store owner "I thought your dog doesn't bite?". The store owner replies. "Thats not my dog."

j-o-h-n profile image
j-o-h-n in reply to TomTom1111

Hey sparky..... does the name Pavlov ring a bell?

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 7:39 PM DST

TomTom1111 profile image
TomTom1111 in reply to j-o-h-n

Nope..but Monte does. 3 card

j-o-h-n profile image
j-o-h-n in reply to TomTom1111

ugotit Monte never plays with a full deck...........

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 7:48 PM DST

j-o-h-n profile image
j-o-h-n in reply to TomTom1111

So quasi moto has a brother who does not have arms. So he has to ring the bells by running up to them and striking the bells with his head. Well one day he trips while ringing the bells and falls to his death. A big crowd gathers around his dead body wondering who he is when someone in the crowd yells out “I don’t know his name but his face rings a bell”….

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 7:58 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

Omg ….

j-o-h-n profile image
j-o-h-n in reply to j-o-h-n

So quasi moto’s twin brother has a twin brother who also does not have arms and he likes to dress up in a captain’s uniform.

So he has to ring the bells by running up to them and striking the bells with his head. Well one day he trips while ringing the bells and falls to his death. A big crowd gathers around his dead body wondering who he is when someone in the crowd yells out

“I don’t know his name but by the way he’s dressed he must be a ring leader”….

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 9:03PM DST

j-o-h-n profile image
j-o-h-n in reply to TomTom1111

So quasi moto’s brother has a twin brother who also does not have arms.

So he has to ring the bells by running up to them and striking the bells with his head. Well one day he trips while ringing the bells and falls to his death. A big crowd gathers around his dead body wondering who he is when someone in the crowd yells out

I don’t know his name but he’s a dead ringer for the other guy”….

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 8:07 PM DST

TomTom1111 profile image
TomTom1111 in reply to j-o-h-n

A woman gets on a bus with her baby. The bus driver says: ‘Ugh, that’s the ugliest baby I’ve ever seen!’

The woman walks to the rear of the bus and sits down, fuming. She says to a man next to her: ‘The driver just insulted me!’

The man says: ‘You go up there and tell him off. Go on, I’ll hold your monkey for you.’

j-o-h-n profile image
j-o-h-n in reply to TomTom1111

Now we're digging deep into the laughter vault......(We tell it like it's an item baby)...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 8:22 PM DST

Kaliber profile image
Kaliber in reply to TomTom1111

Lol

depotdoug profile image
depotdoug in reply to j-o-h-n

Cheep cheep🐥🐥🐥

j-o-h-n profile image
j-o-h-n in reply to depotdoug

Sheep sheep🐑🐑

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 7:43 PM DST

Kaliber profile image
Kaliber in reply to j-o-h-n

Yayahahahaya good to see you back buddy. ❤️❤️❤️

Lulu700 profile image
Lulu700 in reply to j-o-h-n

Good to see “Longfellow, tripod” back in the saddle again ! 👏👏😂😂

I agree. My divorce happened several years prior to the cancer diagnosis. So my cancer didn’t have any effect on the divorce. I keep having to adjust to “new normals” as I call them.

Kaliber profile image
Kaliber in reply to B8ssist

❤️

How is the Hammer?

Kaliber profile image
Kaliber in reply to monte1111

The hammer doesn’t want me to mention her on here. She’ll beat my hind end yayahahahaya 😂😂😂😂

Kaliber profile image
Kaliber in reply to monte1111

Gentlemen never tell anyway yayahahahaya r.

😂😂😂❤️❤️❤️

I gladly welcome all of the spouses, children, brothers, children and friends that may need a place to come and learn about the different treatments available, the side effects that we are experiencing and to lean on the experience of those of us who have been there.

I agree that they, just like me, are mostly not qualified to give medical advise but they need ours and others support to get to the other side of the battles that we are all entangled in.

Good luck my brothers and sisters as we travel this road. May we all go with guidance and remember that the treatment that I chose and the way it works for me may not be the treatment for you or others.

Do what you do with love, it makes life easier.

Lulu700 profile image
Lulu700 in reply to Quick2019

Me too!

What everybody else said. Welcome back Kotter.

well Thank you for making me google that sentence, wonderful 70s haircuts!

John Travolta breakout. Veiled reference to j-o-h-n rejoining group. Very veiled. I didn't have a haircut in the '70s. What did we do before google? Those wonderful days at the library. Now I am part of some alien cloud cluster. Can I say alien? How complicated the world is.....until you have APC or any of the other dreaded diseases that afflict us all. Then things become crystal clear.

Best part of me spending far too much time reading all the replies.

I was going to spend 3 minutes on this post. That was about an hour ago.

j-o-h-n profile image
j-o-h-n in reply to TheTopBanana

** CLICK ON WATCH YOU TUBE **

youtube.com/watch?v=Mmm3KTa...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 08/25/2021 5:44 PM DST

Alexey, welcome to the club that no one wants to join. I don’t think English is your first language, so I will give you the benefit of the doubt and assume your post intended a different meaning than what this group perceived. Regardless, you have certainly figured out by now that most of us deem loved ones/caregivers integral to the treatment process. I think my experience is pretty typical when I say my wife has been with me and taking notes at every appointment with my oncologist, she nursed me through the few tough days during chemotherapy, and her unconditional love is a major reason why I think my life is still pretty damn good, even with this disease. Alexey, if you don’t have someone like that in your life, I feel bad for you.

Alexey, you’ve had a pretty rough introduction here, and it doesn’t matter to me whether that’s because of your intent or because of a linguistic misunderstanding. Please stick around, as you obviously have knowledge and a unique viewpoint to contribute.

And J-O-H-N, welcome back! I figured out a while back that your humor does not detract from your true compassion.

Alexey25 profile image
Alexey25 in reply to Canoehead

Dear Canoehead,Thanks a lot for your comments. You are absolutely right about my English as I am living in Italy.

In one of my replied in this discussion I already mentioned that I have everything including loving wife, children and grandchildren. My main points regarding cancer are simple : it is necessary to find an oncologist whom you trust and to follow his advices( it is absolutely not excluding learning about new medications and treatments and checing their applicability with your oncologist), apart from contacting your oncologist and fulfilling the recommendations it is better not to think about your cancer and even try to forget about it if possible ( surely if you are taking some strong pills each day it could be not so easy), surely it is really essential to have family support and assistance if necessary.

What I consider unnecessary and even dangerous is the situation when some family member is spreading on any forum some fake news, advertisements of "magic" pills or writing something like "I don't know how I will survive possible side effects of my husband after possible chemo he is supposed to have maybe in the future".

I am extremely grateful to my family for not reminding me about my cancer while providing all necessary assistance and help I am asking for. My own personal experience is confirming my statement that the less you are thinking about your cancer and the less you are weeping about your damaged life the longer and happier is your real life.

Unfortunately a lot of members here are pretending to suffer more than their cancer affected men. In Italy it is described like being more Catholic than a Pope. I hope all possible ideas and opinions regarding PC are welcomed on this forum and not only from Americans like some people here are proclaiming. The only restrictions should be for abusing or aggression and I am sure I am not guilty of that.

As usual I am wishing everybody here health, happiness and as mach positive emotions as possible. Surely excuse me my English...

Canoehead profile image
Canoehead in reply to Alexey25

Oh, Alexey, you almost had me won over. If what you object to is people posting fake news about “miracle” cures, you will find plenty of support here, even though your assertion that spouses of cancer sufferers are the ones who mainly spread such news is just wrong. But then when you say that a lot of members here are pretending to suffer more than their cancer affected men, you lose me completely. That statement is wrong on so many levels, it does not even deserve a response. Being provocative can stimulate healthy discussion, but not when you start with an insulting generalization that will turn off most of your audience.

Lezzers profile image
Lezzers in reply to Canoehead

You missed the part where he says

I hope all possible ideas and opinions regarding PC are welcomed on this forum and not only from Americans like some people here are proclaiming.

I don't really post on here but I do read most posts and replies and I can't say I've ever seen any post/comments that have said ideas & opinions are only welcome from Americans! I think the OP is playing games & trying to wind people up, how sad.

Lulu700 profile image
Lulu700 in reply to Canoehead

Oh yah! 👏👍

Lulu700 profile image
Lulu700 in reply to Canoehead

👏👏

Welcome to the forum Alexye25. Everyone is entitled to their own opinion. You really have stirred up a hornets nest however! I must say that most wives, daughters or sisters are on this forum because the man in their life with pc isn’t. It’s rare to see both husband and wife on here together.

I can honestly say my brother is alive today because of this forum . It is because of information that is shared. It may have been shared by women or men. It doesn’t matter. The information was useful in helping to direct his treatment. I am grateful for everybody who posts on here whether I agree with them or not. If it’s something I don’t like I just pass over it. I hope you come to value everyone’s opinion and respect the poster regardless of gender. We are one big family on here and I hope you become part of it.

Kaliber profile image
Kaliber in reply to Faith1111

👏👏👏🌼🌈🌸❤️❤️❤️

Alexey25 profile image
Alexey25 in reply to Faith1111

Dear Faith1111, thanks a lot for your kind comment! Alexey

When my husband says it’s solely his decision about what treatments he take, I respond by saying that there are two people on this bus. What I mean is that my life has been significantly subordinated to his treatment needs. I run most of the work around the house, we can’t leave the area (even if he felt good enough to enjoy leaving the area) do to treatment appointments, our activities together are very restricted, a certain activity has been nonexistent for years. If the treatment has side effects, I’m there with the damp rag, checking the temperature, figuring out whether to call the doctor. None of what I’m saying means that one person has more suffering than the other, or that I hurt more than he does, but I am saying that if you have a committed partner thru this, than both parties are in pain and need support and have a stake in the treatment decisions.

I have also never heard on this forum the kind of whining from a family member that you mentioned.

If your wife is talking to you about what she can realistically provide to you during your times of incapacity , listen to her. Agree to other caregivers. Find ways to give her time to do her own separate life.

Give her access to this forum so she can allay her fears and get realistic info. Don’t shut her out from the chat. Let her get the information she needs to help her adjust to managing this new togetherness.

The love you have together will become intimate and special. Don’t shut her out of information and support. You are not doing it on your own.

Lulu700 profile image
Lulu700 in reply to NWLiving

“ on this bus”. Ain’t it the truth babe! 👏👏😂😂😂

Alexey..... my point about America is that we have rights here to be wrong. That's why we roll with the punches... I fight my Pca with humor, humor and more humor. So stay with us and here's one for you:

youtube.com/watch?v=21mLECf...

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 08/26/2021 1:00 PM DST

I hope you guys know how much we love you…

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