Good luck and prayers but I'm done

[jkholmes]

I believe there are great people on this site but I have encountered some trolls who private email with bs. I'm new on this site 5 months in. Sorry if have posted my good results. I'm sorry for your pain. Done here. Have strength and long years ahead. One last thing I have stage 4 advanced prostate cancer with mets.

[gusgold]

no one holds your good results against you but don't be so sure you are in better than the other posters...stage 4 cancer with mets can change in a heatbeat and your years could turn into months

[jkholmes in reply to gusgold]

lol i never said anything Gus just my results. I realize that . If you took the time to read my post i was looking for answers. There are not to many men in my neighborhood with this cancer. Thanks for positive feedback.

[Canoehead in reply to gusgold]

Wtf? Years turn into months because someone Leaves? This is a great site for info, but it is otherwise a tough read; we see good results and bad. That’s life, and that’s this fickle disease. My results are good now, but reading my brothers’ stories scares the hell out of me. Good luck, kholmes! You’re still one of us. Live long, brother

[jkholmes]

Yes was here for info and sharing . Not a tough read i know all about this cancer. My Dad died of prostate cancer. Live strong and long

[Dan59]

JK, I am sorry you feel you have to leave, Who is sending you spam in pm, maybe you should tell Daryl. How have your platelets been doing? I noticed mine dropped after radiation. I myself like to hear good results, not sure who would not, and what that says about them. Maybe you will reconsider, we are here for you. Live long and prosper!

Dan

[jkholmes]

Thanks Dan . I'm a big boy not gonna rat to Daryl. Yes Platelets have improved. Just post to compare with others. Don't need negative stuff. After being a professional athlete and coach for 37 years i understand unhappy people and the need to vent. Best wishes my brother.

[Dan59 in reply to jkholmes]

JK ,Glad to hear the platelets are improving, There are plenty of good people here, and we are all in the same boat, we can benefit from each other. This is really the best group I have found, hope you hang around.

Dan

[jkholmes in reply to Dan59]

My wife saw these emails and was shocked. Thought this site would be helpful . I can't sleep had to resign from my college coaching position because of side effects and fatigue

. Stress is going to kill me.

[Darryl Partner]

No one gets to bully or troll on my watch. It’s not “ratting” if you are telling me about scum. Just send me a private message

[ronnie1943 in reply to Darryl]

Hi Darryl, I had a few bullies , they must be sick in the head .these off the wall posts left me very upset, feeling hurt and sad that anyone would respond to people who are suffering from any illness. These people are one bunch sick pups!!! It won't keep me away, most all these wonderful people that I have come across, caring, helpful supportive, and we are all here for each other. We cheer on the people that are doing well, help the ones that are struggling a little for now, there luck will turn around to, love this site and love and pray for all of you!!! Please reconsider JK, we are all happy when someone does well. It gives us all the hope that makes us stronger to get up and knock this beast down!!!

Don't let one or two sick pups have you leave this site, there are way to many here rooting for you!!! We help each cheer for all that are fighting the fight and doing well and help our other friends that are down for a while get back up and keep fighting. There's always help and lots of new treatments.

Reconsider JK, we all love up best people and that had Keeping the beast at bay.

Taking care of my husband stage 5 PC

Lynn,Pa.

[Dr_WHO in reply to ronnie1943]

Way to say it big sister!

[ronnie1943 in reply to Dr_WHO]

Thank you little brother!! Hope you are doing well!! Good to hear from you. 😊 I hope JK decides to stay with us?

Just a little update, Sam might qualify for Keytruda, we will find out this week. Dr. Who, I was worried, Sam is a strong guy and I felt like he was giving up,we have not yet been back to the oncologist since Sam had the one lymph node removed, we are going back this coming week to see his oncologist.

Fingers and toes crossed! 🙏🏻

Take care,

[Dr_WHO in reply to ronnie1943]

It is hard, but please the two of you continue to fight! Know this, lymph node involvement, while bad (it is what I have), is in no way the end of the line! I plan on being here for a long time. So should Sam. Sometimes keeping fighting is hard. While it is hard on yes that have this demon, it can be harder for our caregivers. Will your nephew be able to go with you to the doctors? Sam will be getting cutting-edge therapy. Wishing and you the best. Here is some information on it.

prostatecancernewstoday.com...

[ronnie1943 in reply to Dr_WHO]

Thank you for your support, I'm happy that Sam decided to go to see the oncologist, he had me scared, He keeps so much inside, I sometimes wonder what he's thinking? He's very strong willed.

Dr. Who,I know everyones cancer is unique to them but did your dr.ever recommend you haveing chemo every week. Dr Ali suggested that Sam haveing chemo every week even without knowing the biopsy report. Sam was not happy about that . He was so sick with taxotere.

My nephew is coming with us, I'll sure need the support!!!

I read the article you posted on Keytruda.

Thanks again little brother!

Well wishes coming your way!!!

[ronnie1943 in reply to Dr_WHO]

Hi Dr Who, finally got Sam's biopsy report, he did not qualify for !Keytruda, he's getting a cat scan this Tuesday and than going to,see the oncologist the end of the week.

Dr Ali said that she wants Sam to start a cancer pill either Sunitinib or cabozntinib ?? I never heard of either, I think they are clinicial trial pills. She said she didn't want him back on chemo because the one he would have to have is very strong and not well tolerated. Sam had a hard enough time On taxotere! I'm scared, nervous and worried but still hopeful. Did anyone on this site ever hear of these two drugs??

Worried, Lynn.

[Dr_WHO in reply to ronnie1943]

Dear Lynn,

Please keep positive! It looks like you have a very knowledgeable team that is up to date with current treatments. Sunitinib is not your typical chemo. It looks like it is in a class by itself. Listed below is information on it. Just look at the big picture of what they are saying. Hopefully your nephew can also help you.

chemocare.com/chemotherapy/...

It’s use for prostate cancer is cutting-edge. They think it may help keep Sam’s PSA down.

cancernetwork.com/genitouri...

Listed below is some information about cabozntinib that is easier to read and understand.

ptcommunity.com/news/201704...

Again, it looks like Sam’s medical team is looking for the latest developments. Take heart!

In addition you have everyone here pulling for the two of you. YOU ARE NOT ALONE! After all, people like us we have to stick together! I am sticking with you big sister!

[ronnie1943 in reply to Dr_WHO]

Thank you so much for all your positive support!! I needed to hear this, I'm not to up on all the treatments. I will read up on the info you sent. Thanks again, and yes we all have to stick together! I'm so grateful that I came across this site really by accident,. So grateful for all the kind, caring people and the success stories that give me so much hope when I feeling hopeless.

I'm sticking with you too!! Big Sister 😊

[lewicki in reply to ronnie1943]

Hello, Just now reading this post. Just on site within the last year. I am interested in any information about getting Keytruda. Thanks

[sdnb in reply to ronnie1943]

Hi ronnie1943, interesting, I have never heard of Stage "5". Could you fill me in on what Stage 5 is? I am a bit behind the latest news in the arena of prostate cancer, so your information could be very helpful. Since no others here commented on Stage 5, they must be up to date much more than me and have a clear understanding of it.

Thanks!

[geemcee]

We need positivity. We need to hear great progress and inspired responses. Please don’t leave because of a few douchey responses (sorry if that’s a banned word.) I get hope for my Dad from people like you JK. Ultimately it is your decision. I truly believe there’s much more support and love here than trolling bull*hit. However, either way, I wish you a long healthy, happy life.

[JamesAtlanta]

Hope you will stay. Darryl can help you address any issues. (Darryl, we don’t thank you enough either).

This site helps me cope with this awful disease.

Best wishes to you on your journey.

James

[ctarleton]

Hi jkholmes,

"...had to resign from my college coaching position because of side effects and fatigue ..."

Where did you play and coach? Have you been able to keep up with the game, so to speak, in some other ways since?

The profound Loss and sense of Sadness and Grief that can come from no longer being able to act or perform in one's previous Jobs and Roles in life before getting constrained out of them by serious disease or side effects cannot be overstated. It Sucks. Big time. And the more central those parts of life are to one's own sense of personal accomplishment and self-identity, the harder it is to acknowledge it and to cope with it.

I've been in some cancer support groups and prostate cancer support groups where this subject of changing Capabilities, Roles, and Self-Identities has often surfaced, among men with cancer, and also among women with cancer. Some guys just get crushed when they have to contemplate leaving their established careers, and most of the routines and familiar things and the people they have known there. Some women cannot let go of nurturing and caregiver roles and will still find themselves trying to do a full-up Thanksgiving dinner, without help, in the middle of chemo treatments. Some guys hate it when they can no longer do the more strenuous parts of outside yardwork. Etc.

Coming to terms with these things, and learning all over again how to Ask for Help and to acknowledge one's interdependence with caregivers and others is not always easy. For many men, in particular, we have had a lifetime of learning to be personally strong, resourceful, and independent. Advancing disease and treatments and side effects can start to unravel some of that.

Personally, I have come to see my own life as kind of balanced on either end. When I was born I was totally dependent and capable of "doing" very little and lived only because of the nurturing and love of others. I spent a long time growing strong and independent and moving out into the world on my own, and now and then was lucky enough to do some loving and nurturing of my own, when I wasn't messing up other details of my life. Now that I am older and facing my incurable Stage IV prostate cancer, I think there will be times for me when it will be best to "re-learn" some of those things that I already knew in my earliest childhood and infancy. Sometimes the thought of that frightens me, and other times it calms me.

Just some thoughts,....

Charles

[DenDoc in reply to ctarleton]

Charles, This is excellent. I have just shared it with two people dealing with other cancers who could use the perspective. It will also be of value to me when I decide to have a little personal "pity party" which occurs now and then. Thanks, Bob

[Hidden in reply to ctarleton]

To ctarleton . I just bumped into this past post of your . Remarkable! “Relearn things I’ve known” very insightful .

[leswell]

There must be much we can do to help.

Do not give up on us yet. Why you? Why not us? Who are these evil people? Should we all quit and sign up with you with new email addresses? Very angry about your mistreatment! Mrs. S and spouse

[bluepacifica]

JK: I was so saddened to read of your negative experience with some people on this site. I don't know I would have handled something like that. No one needs that kind of treatment. We have a sick society, I fear, and getting nastier. Yes, the stress can be so destructive. I'm constantly expecting a shoe to drop and try to push it out of my mind. I can do that except for about a month before blood tests and a Lupron shot. There's another site that is wonderful called You Are Not Alone, YANA. It gave me strength when days were darkest. Best wishes and aloha to you and your family. Once again, I'm so sorry that negative, nasty people invaded your life.

[20PeteG16]

Jholmes, best of medical care to you and those who care for and about you.

PeteG

[snoraste]

I for one love to hear good stories and successful results. It brightens my day and gives me much needed hope.

I respect your final decision - whatever it may be. But don’t do it because of these trolls. For every troll, you have several-fold number of friends who wish you well, and want you on this site.

[j-o-h-n]

To jkholmes

If you think coaching college is great, you should have seen the job I used to have.

I use to Referee a 20 to 30 year old female volley ball league in a nudist colony.

Come on now.... you gotta laugh at all those trolls smolls. Don't leave, this is a great site with very conscientious and caring members. Now do the old statue of liberty play for a last second TD and a two point conversion to win it for the Gipper.

Hang around and Hang tough.

Good Luck and Good Health.

j-o-h-n Tuesday 02/27/2018 6:02 PM EST

[jkholmes in reply to j-o-h-n]

Your right . Wish they had the guts to meet me. Finally calm down. Jealous of your referee career

[j-o-h-n in reply to jkholmes]

too bad, I"M GAY......*

*Happy all time is what I meant. LOL

Good Luck and Good Health.

j-o-h-n Tuesday 02/20/2018 7:58 PM EST

(to my ex-wife "Wish she had the guts to meet me")

Good you calmed down.... Now laugh!

[Dr_WHO]

Sorry about the trolls. My prayers will go with you.

[ronnie1943]

So happy you decided to stay!! 😊 There are some great people on this site,!! We are like extended family!! The hope, support and all the caring friends keep me going!!

Lynn/caregiver Pa.

[Apollo123]

Hi I’m glad your staying I really love hearing positive results and stories, it motivates me so much. I can understand your feelings as I recently took a short break due to a flow of negativity on here but after I thought about it I realised the posts are mostly well thought out and the discussions helpful. 👍

[erjlg3]

So glad you're doing well jkholmes ☺☺☺