First post. Came via malecare.org. I'm very glad to have found this community. A Stage 4 prostate cancer diagnosis two years ago, and subsequent Androgen Deprivation Therapy (ADT) with attending side effects have dramatically changed my life. I'm fortunate to have a great medical team and supportive family & friends who have helped me adjust to the loss of my ability to work and earn, and the closely following social isolation.
I've been joined on this journey by new road companions - fatigue, hot/cold flashes, drenching night sweats, insomnia, decreased muscle mass, loss of intimacy. And ever present pain.
Powerful, intrusive moments of uncertainty, lonliness, fear, anger and grief play like the movements of a dark, despairing symphony.
This is my new life. "Three to five years," I was told two years ago. "You don't look sick," I'm told. "Maybe next time," I say.
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I take Effexor 75MG for the hot flashes, and it seems to help some. It does help with the depression. For most of the others, medical marijuana might help if it is available to you.
I take Effexor, too. Found 75 mg twice daily to be the most effective dose for me. Max daily is 200 mg, as I recall. I still experience hot flashes, but nothing like I'd experience without it — as I found out when I accidentally failed to fill my pill boxes and went off cold turkey. Drenching sweats, crying, auditory and visual hallucinations for a couple of days 'til I figured out the cause. Not something I'd care to repeat. I take Ambien for sleep. I had been taking melatonin, but it stopped working. No sleep-walking, -driving, -eating, -phoning, or -sexing, as far as I know. (All possible side effects of Ambien.)
Welcome to the club, sorry that you are a member but there are a lot of great folks here. I have no solutions but I can sympathize with you. My story began eight months ago. Stage 4 D1 Ductal, T3N1Mx, Had surgery, currently on ADT, and I am done with 14 of 38 rounds of radiation. Like you I am dealing with hot flashes, mood swings, fuzzy thinking, loss of muscle mass. Thankfully not dealing with that much pain.
"Powerful, intrusive moments of uncertainty, lonliness, fear, anger and grief play like the movements of a dark, despairing symphony."
This disease is a beast that can bring fear into the hearts of the strongest of men. It is not easy to live with the complications of the disease, but we live to fight another day. There is no expiration date stamped on our foreheads. No mere mortal knows when our time on earth is up. Create moments of joy, such as viewing the lace work of the branches of a tree. Enjoy mother nature and gather strength to fight another day.
Yes, how well I know everything that you're going through. I also came to this site from the Malecare Advanced Prostate Cancer site. It can be so lonely---sometimes friends don't want to be involved, or are afraid of the cancer and they also don't want to feel obligated to help.
These support sites can be so helpful and even essential for those of us who don't have family and few friends left. Everyone here is so supportive and kind. And we find so much understanding from those who are going through the same things; we're not really alone.
My new hospice doctor and nurse both commented on the fact that I don't have any lines or wrinkles on my face. I opened my robe, and showed them how they can now count my ribs---I have lost so much weight and muscle mass. My collar bones stand out, and I can almost completely encircle them with my fingers---there is hardly any tissues left around them. I haven't, for some reason, lost weight in my face, but all over my body my skin wrinkles like crepe paper---the subcutaneous fat is gone, and it's so very thin now.
You may have been told "three to five years," but the old statistics no longer apply, with the new treatments. And besides, we are not statistics; we are individuals. Nobody can tell with any degree of accuracy how long we will live.
Good message Eric. Nice to hear from you. Support here is a two way street. You gave me a lot of support when I was diagnosed with Stage 4 Ductal prostate cancer. I look forward to reading your messages!
Hey Len, join the club. Nobody can tell you when your going to dance with the worms.
Although I feel like shit, I also look good. I'm seven years into a ten year sentence.
But, you know something, I don't care. Since day one, I told myself I wouldn't let this Pca get to me. And I stuck to my word. I can't do a freaking thing, I put on, but did lose half of 50 pounds, got boobs, have minimal support...but, I have always had a great attitude. Right now I have a catheter in since July 20th. It is disheartening, but I'll get over it.
The same as you'll get over it. A small change in attitude does wonders.
Hang in there! In 1999 on diagnosis, I had a 48% chance of survival 5 years and yet 17 years later here I am. You learn to to live with it although at times it is tough. The past is history, the future a mystery filled with unlimited possibilities. Live in the present and make the most of it.
Many of us out there with some of the same. Estrogen transdermal patches have been a great help for hot flashes for me. Has oncology sent you to radiation therapy to explore treating focal bone lesions?
You should look for a prostate cancer support group in your area or through your oncologist. Urologists not much help IMHO. Fellow warriors are very supportive.
Our Brother-of-the-bonnyblue-ribbon, faced with radiation and 36 months on ADT, I chose cyrosurgery in 2008. When PSA increased in 2011 my urologist recommended ADT for life. Cancer was only in lymph nodes so he agreed ADT for one year. I had my life returned and have been fortunate to near full recovery on active surveillance now 5 years.
Recommend; DASH for diet, conditioning exercise, a daily journal tracking every important aspect of your day, joining a face-to-face cancer support group, meditation/faith based fellowship and always have an advocate with you. These items I have incorporated in my new life in the bonnyblue ribbon.
I pray for your full recovery. Living with PCa for me has become a chronic medical condition...
Sorry to hear you are having a touch time. I too lost most off quality of life even though doctors claim that is what they are saving. I changed everything and found doing stuff with short finish times game me some respect for me. I do metal models and level 3 plastic models. This is far from fishing, hunting, sex, And all the other tings that go with a normal life. The only thing I don't have is the constant pain. Hang in there time stamps can change mine went from a few weeks to I don't know now in the future. Get a good support group that you can talk to and try to have fun. I found the nurses during chemo put up with a lot so I joke with them also. Quality of life is what you make of it so find something you like to do and do it. This becomes your new job if you want to look at it that way. Hang in there and have fun.
Hi Len, welcome (unfortunately) to the club. As you can see there are many levels of how this disease affects individuals. It can be a lonely and frustrating time. That said, allow yourself time for a "pity party" since you've earned it but leave the party and get back to the business of living. If you need to schedule it on your calendar for 15 minutes a day or a week, but don't increase your appointment time. Remember there is so much positive to do and see. Yes, we have our "ticket" punched but so does everyone else alive and no one knows the day or time. List the issues that worry you and take action steps to eliminate each one as best as you can. We are all as lonely as we choose to be, so find someone else to help and allow yourself to forget your issues for a while. Blessings fellow traveler!
Welcome to a wonderful group. Sad to say what you report is the norm for me and what others also write. The good part is that we are still here and functioning. I silently complain about the state of the body, but after awhile it all becomes the norm and when the discomfort seems a little less it is a time to rejoice. I schedule work every day and do it no matter what and I think it really helps to make the positive over come the negative to some extant. Make plans and goals and do your best to meet them. If some fall short, rejoice it those that came to completion and for the rest: hey, there will be tomorrow! Blessings to you.
I too have stage 4 (lymphatic system & spine). I boarded the PC Train in 2009 with station stops at: One Zoledex treatment to allow me delay treatments, to enjoy a pending cruise; radiation (41 treatments); enjoyed watchful waiting for few years until the psa reached 37.7; then cryo therapy was suppose to be my exit from PC, unfortunately, the train was already pulling into the stage 4 station; There I met my new "worst and best" friend named Lupron/Elgar. We met for the first time, resulting in a undetectable psa. We meet every 6 months for lunch (aka treatment) and after 3 lunches my psa is still undetectable! Yes, sometimes it is necessary to visualize PC in a three denominational concept. A little humor goes along way, is helpful. I hate all of the side affects. I'll endure them as a trade for a reward, knowing, after each treatment, I get my ticket punched for another 6 months of living life "somewhat" on my terms. Do I think the status quo is long term, probably not? The next step may carry it's own horrible side affects. Am I going to lose an hour, of these 6 month time periods, wondering what's next? I can't afford that kind of unproductive thinking. My mind set is to make every waking minute productive. Even the insomnia, offers an opportunity to "live life"- reading, listening to music, watching TV and yes, even sharing on Health Unlocked! Make today better than yesterday and you'll have some great tomorrows- AS ONLY EACH OF US CAN DO!
Len, here's wishing you the best of everything life has to offer you-
You have gotten some good feedback. Let me just add a few things. Regarding hot flashes and other side effects of lupron: I take baths with 1 C baking soda and 2 C epsom salts, soak at least 20m min, best 30. This has helped the hot flashes. Drinking an oz of organic noni juice in the morning helps even more....don't ask me why. It just seems to work and has a lot of health benefits.
your prose is beautiful and deeply meaningful to me
"I've been joined on this journey by new road companions - fatigue, hot/cold flashes, drenching night sweats, insomnia, decreased muscle mass, loss of intimacy. And ever present pain.
Powerful, intrusive moments of uncertainty, lonliness, fear, anger and grief play like the movements of a dark, despairing symphony."
It's so true and so sad! I also love the "maybe next time" line. I don't look sick at all...people say I look amazing and YOUNG for. 61....so it's hard to expect people to open a door for me...or do anything for me...but I feel weak and tired sometimes....but, alas, I still "look great"....even my doctor on my last visit (I had on a sleeveless shirt) said..."you work out STILL?" and I said yes...but after I left...I thought...what am I supposed to do at this "stage" ...? lay around like Camille on a chaise lounge and clasp my hand with handkerchief against my bosom and my other at my forehead? I'm still doing every thing I did "before"...just slower and with less weight...
**while I was doing radiation 3 years ago...I took the elevator from radiation up to the third floor of the building for a vending machine snack....in the elevator a nurse said "you shouldn't be wearing flip flops in the gym". ~~I said "I'm not here for the gym (turns out it's on the 3rd floor)...I'm here for radiation treatment. Gotta find the humor in everything...while I can.
P.S. I find for sleeping...I do either 3 drops of hemp oil and a Melatonin Pill Or 3 drops of hemp oil and 3 drops of cannabis oil. I sleep almost straight through the night..maybe one wake up...and feel more rested.
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