Still kinda new here....been a little over month (April 6th) since I was initially diagnosed, then found out when I went MD Anderson in Houston, that it has spread to sacrum and invaded Bladder...Started Degarelix and going for second shot on May 28th, doctor wants me on Zytiga asap...waiting for insurance to approve it. (Cigna, open access plus)
1. What is my outlook....really I want to know....terminal?...1 year?...3-4 years?.....I feel pretty darn good...nite sweats are unreal, but other than that I feel ok...losing weight....a little weak but... OK.
2. I have applied for SSDI and was literally denied by the time I drove home from the social security office?...Aren't I in stage IV PCa ?...Doesn't SSDI consider Stage IV terminal.
3. Anyone ever told their mortgage company they have PCa?..Ive put my house up for sell, help my wife downsize, no way my wife and kids can take care of it...if I die soon...
4. Muscle wasting?...seems like my legs have gotten thinner?....weight training....
5. Lastly....Any advice for the future.....what I should do now? do later?....Tell my family...Tell my doctor.....?
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DeanNelson
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Sorry you’re facing this. Remember you are an individual, not a statistic. Your disease is not curable under current therapies, but you have lots of therapies to try and aren’t likely to die quickly. Stick with MDA or another center of excellence, and make sure your medical oncologist is an expert in Prostate cancer. Zytiga sounds like a good next step.
The magic words for quick SSDI approval are “metastatic castrate-resistant Prostate cancer.” It sounds like you do not yet know about being castrate resistant. If you’re not, that’s good for treating the disease, but it means appeals and a longer process with SSA. Private insurance may have different standards if you have it
No reason to tell your mortgage company.
Longtime use of hormone blockers can cause muscle wasting, but probably not that quickly. I’ve experienced it, but I’m more than 11 years into this fight.
You didn’t give your kids ages. If they’re over 8 or so, be honest and open to questions. You don’t have to share the gory details. My two kids were mid-late teens at my diagnosis. I chose the time to tell them carefully. They’re older now. They see how I’m doing, but they don’t have a lot of questions. Expect and allow tears.
Tell them and your wife you love them and you’re going to fight this beast as best you can.
Tell your doctor you want an open and honest relationship and that you trust him/her. Oh, and that you intend to fight.
Again, sorry you need to be here, but draw on our knowledge and let us know how you’re doing.
1. I also am at Stage IV of this disease since 2011. Everyone of us is different as far as how this disease impacts your life. I get asked often how long I've got to live. In my opinion the only one who knows that is God. I plan to live many more years despite this disease and will continue to fight.
2. I was able to get SSDI about a month after I applied with back pay. I'd check into this again, they probably were not aware of the rules when you are at Stage IV of this disease. They do check with your doctor to verify that you are Stage IV.
3. Muscle wasting? I go to the gym everyday and do two days of cardio and 3 days of resistance training. I've found it helps with your cognitive thinking, helps reduce fatigue along with keeping your muscles in tack.
5. Advice for the future. Get the best treatment you can find, don't give up, have a positive attitude and live your life to the fullest.
To DeanNelson,, welcome to the club . Sorry for the hell that you are in right now.. at some point with some luck , things should get better . I got ssdi and I am not castrate resistant . I did have kidney failure and tubes also bladder and urethra affected..I ve heard that if an organ is effected that qualifies you. Your bladder is a organ , I say that you’re eligible. You are not going to die now. You should live for years and perhaps decades if all goes well from here forward.
There is no candy coating APC and their treatments. It sucks . For everyone involved. I suggest you go holistic and get on a total
Health regiment .. Both parties have great smiles in your photo. You will have many more smiles to come. 21 year old twins. You have incredible reasons to live and fight this disease.. if not it will surely take us out. Treatments can give you life. You will be permanently chemically altered. No male hormones will change you drastically. APC is a fight for quality of life today .Treatments can extend your stay . The important I thing is if you feel pretty good now . Build on that , start exercising. Eating right. Some have heart disease some diabetes, we have this.. Good luck on this journey. Love everyone around you. Love life itself. It’s a bumpy road thru treatments but you can do it. We all go thru the same fears and emotions . Good days bad days. You will get thru. Consentrate on now and getting thru treatments. Pamper yourself anything to mayou feel better. Massage , acupuncture, sauna, eat well. Lots of spring water. Ask questions, they will be answered. You are far from being alone in this plight. It’s epidemic in my opinion. Be you own health advocate .. God bless you and your family in this trying time.. Scott
You can ride this baby into the distant sunset. Pc won’t promise it’s departure from us . We d like to throw it out with the dish water, but the dish water is our bodies. A war of attrition ..It’s a tenacious baby, You will push this back as far as possible .. Soul searching and prayer is needed..
Everyone wants to know how much time they have left. I have read 100's of case histories and the best predictor is time to failure. Right now you are on Firmagon and soon to add Zytiga. If you fail Firmagon/Zytiga (become castrate resistant) in less than 6 months the odds are you will survive 12-18 months but lots of guys go 2-3 years or more until castrate resistance and survive for years...generally PCa is easy to control until the development of mcrPCa where it become a fatal disease once you run out of options to control the Beast. Right now when a guys fails Zytiga the next drug is Xtandi which usually remains effective 3-6 months....in some guys chemo can reset the clock allowing these drugs to work again for a short time...a new drug in Phase III trials, Darolutamide could be a game changer.
Good luck with the Darolutimide. I’ll be following your progress Sir. If it bids well for you it’s hope for me and others... god bless in this fight for life..
I was very scared when my husband was diagnosed 8 plus years ago, and panicked when it reoccurred Jan 2017.
I begin by saying welcome to a group of well informed, compassionate supporters.
There is so much information here and elsewhere. Research, ask questions and do your best not to become inundated by all the Information.
Each person's body, predignostic - health and even everyone's response is unique. While people have a great deal of knowledge and experiences, decisions must come from a personal perspective.
Humans have great intuition, follow your heart in selecting your doctor's. I think one needs a balance between a Dr who is knowledgeable but also has the compassion and patience to answer inquiring minds, without brushing you off or making you feel silly.
Love and share your inner fears, anxieties, desires with your partner, who knows you more than anyone else. Take time to celebrate each moment of your life. Do your best not to focus on statistics, prognosis, but be present in each moment of your pleasure and pain.
It took my husband a lot of pain and courage to cry in the presence of our two adult children, but it broke a barrier, and allowed all parties to do some anticipatory grieving.
I am so so sorry about your situation, and as I often say to my husband, I wish I had a magic wand to make this horrible disease go away. Until then let's do our best to live, love, and laugh. Cancer makes us more aware of what is important through this journey of life!
And... As I have been told over and over again by members of this group..."You are not alone in this, when one is in psin we all hurt."
With a prayer for wisdom and good symptom management, I wish you and family the very best.
A hug Dean! I am 51 years old and I have been on this new path for 9 months. Diagnosed with a very high PSA and mets in many bones. At the time of diagnosis with a lot of weight loss and fatigue.
I was immediately put into Zytiga and Prednisone. I achieve stability. At present my psa is still very low, I have no pain and I have gained 17 pounds.
It is not easy, nothing easy. But physical exercise, trust doctors, trust in yourself and the love of people who love you. They make it more bearable.
I have no idea of the path that remains for me to travel. I hope it still has a long journey. But I'm really trying.
The fatigue alone stinks. I thought I was being a lazy pos until I figured out why. I'm hoping I get some of the energy back after I get rid of this faulty part. Great post!
No one here is going down without swinging. Not happening....
Pretty darn good .. I can’t complain. Two months ago I started Sam-e and alpha lipoid acid . Sam-e for mods and alpha lipoid for chelation of heavy metals . Mood better. Get up in morn instead of lounge lizarding around in bed for hours. I get up , more energy. Did my lady IV of Vit-c today.. Really makes e feel good. I’m on a maintanence dose every 3months now. Off to the Rockies for summer and out of the cactus forest and rattles until fall .. I’ll follow you . Keep me posted . In a few months , god willing , you’ll find acceptance and most fears will calm down . Until then keep you head to the plow and dig deep to overcome this..
Dean, I got diagnosed last month with an 8. Having the prostate out on the 29th. I'm 49 and I don't plan on going anywhere anytime soon. I did tell my work place and family. I'm still learning as well. I didn't even know what a Gleason scale was until last month when I found that I was on it....lol. When they remove my prostate, they will actually remove part of my bladder and a significant piece of my urethra. Doc says, my junk will be shorter. I said, "christ, i don't have that much to lose" :P. Is this an option for you? If they remove the prostate, can they get the infected bladder and urethra with it? This is no fun at all man, but we're all in this thing together. Perhaps we can all get together and watch a romance together after the take away all of our testosterone. Who's buying the rounds of tissues tonight? We'll get through this shit. I'd be lying if I said I wasn't nervous (ok scared) about the operation. I don't want to be a depends baby, but on the other hand, at least I'll be around to whine about it. "Great, I'm going to be the old guy smelling like pee"...nice....
Don’t predict bad thing upon yourself. Positive imagining and thoughts are a major part of recovery . Our minds are so powerful . I believe if we tell ourselves that “ We’re F#####” then we are just that. You can do this. You’re going to survive. Get your ducks in a row to be here for many years. Grab some loving around you.
Oh don't get me wrong, I'm optimistic, but I'm still going to joke about the things that "could" happen. Things are moving so fast, didn't realize this would move along at this pace. Last month, nothing. This month, under the knife. Though, sometimes I think this might be better this way, because I don't have time to think/worry about it as much as others who have their procedures drawn out. See what happens
You have a point. Get it over. No looking over your shoulder. You’re going to hit this face to face. Strengthen yourself anyway you can while going thru treatments and beyond. You just can’t lay down and roll over . Or APC will dunk ya..
It’s the old Blistzgrieg. Everything at once. This Ian a life test that you need to pass.. and you’ll get thru this phase. A yr from now you’ll be better and offering hope to newbies. There will be times that you feel like your blood is boiling. Times that you won’t feel any energy at all.This too shall pass brother. Once you top this peak in front of you the valleys on the other side will be all the sweeter.. So do as I say ,not as I did. I fought myself tooth and nail . I didn’t want give up my manhood with out a hellacious external battle. Don’t fight self. No winner there .. Stay cool this season . God bless you with the internal strength to do,what you’ve got to do ... peace ybkm
Hi Dean welcome to the club that none of us applied for membership but got excepted anyway. We are all I n the same boat here so draw from the wealth of knowledge. I'm on the Zytiga/Prednisone train along with Eligard six month injections and Xgeva injections for bone mets. There are good advocate groups to help with the costly medical expenses available my Doctors and their staff actually assisted me in the process which I'm eternally grateful for. The best medicine available to you my friend is a positive attitude don't let it get to you . I wish you the best have faith and God Bless. Leo2634.
Good job Leo. We don’t need no stinkin badges. We are all members.. Pool our resources and the possibilities are unlimited. With your great attitud3 I m not going to worry about you. Still , I pray for happiness for all of us..
I read research that said although the ductal type can be more advanced because it is often diagnosed at a later stage that it is often highly responsive to hormone therapy. You look familiar to me Dean, ever serve in the army? Rust
I hope its highly response...I feel ALLLOOOOOTTT better than I did a month ago....and my BP and come down to the normal range...I was like 150/100 all the time ...
I served in the Navy and was attached to special forces with the Delta force..in the middle east....but that was 100 years ago...
Hooyah, NavSpecWar10 out of Rota Spain/Little Rock-Fort Story! Long ago though. I think Group 2 spit 10 up now and incorporated them into different specwar groups and well, even numbered teams, as it was east coast. I did 6 years normal Navy out in San Dog, but didn't support the teams during that time. I actually enlisted twice, once in 88 and another time in 2001, both 6 year gigs. Never got to work with the odd teams on the west coast. Coronado Country Club....lol.
Dude you got a trident too!! Hooyah!! I was out at san dog for 52 weeks 1982.....went to middle east right after.....actually was under "Dick" Richard Marcinko for few months
I was just support. I didn't have a Budweiser. I was the computer/coms geek...lol. I loved every minute of it and would do it again in a heartbeat. We got sent to Sicily man, talk about a potluck duty station. Sigonella air base. We did train along side of everyone. There was a mix in the unit, parachute specialist, corpsman, Sea Bees, and techs (me). We would do the run swim run, which was pretty insane. I remember one guy got into the "truck of shame", which means he gave up. He was out of the unit within a week. It was good times, but they were pretty serious about he company the kept. I ended up getting a letter of commendation out of them. Loved it there. I got their exchange straightened out and got them backing up the information properly.
That's awesome that you got to operate with Richard Marcinko. He's a legend!!! That must have felt incredible. Hooyah man!!!
He was incredible......one mean Mother-Fer if you where the enemy....but talk about someone expecting you to be a team player....He pick the ones out that weren't and they but gone by morning...
That's the awesome part of SpecWar. Everyone there WANTS to be there!!! You can easily figure out who doesn't. Like the guy that took the ride of shame in the Nav Pickup. He didn't finish the run after the swim. I know that doesn't sound like much, but it tells you he's a quitter during operations. Sorry dude, have a good life. We don't need people who will give up half way through. F that.
And with that said, You and I, as well as the rest of the folks on this site are in another fight. It's up to us to keep on swinging. There's no quitting on this one either. We can do it, and we will beat it. Hooyah! Dave
Sorry to hear of your diagnosis, but welcome to the club. We all go through panic mode when we are first diagnosed. I know I did. But even with a Stage 4 diagnosis you will be around for many more years than you think. Ignore all those gloomy statistics. They are way outdated, and mostly based on cases from years ago, before we started getting the plethora of new drugs and treatment protocols that didn’t exist when those stats were even remotely valid. If you ate getting your ongoing cancer care at MD Anderson, you are in one of the top 2 prostate cancer facilities in the country.
I was Stage 4 at diagnosis 3 years ago with one bone mets to inferior pubic ramus (bottom of pelvis). I started treatment at the Mayo Clinic in Jacksonville, FL in June, 2015. I have been on Lupron/Eligard and bicalutamide (Casodex) since then, and recently completed a course of 6 cycles of chemo with docetaxel. My PSA is still undetectable, my one bone mets has ceased to “light up” the PET scan, no bone, or for that matter, other pain, and generally feel pretty good with very few restrictions on my daily activities, other than some tolerable fatigue and muscle weakness, whose major adverse effect has been to take about 10 yards off my drives in my already pathetic golf game. But I still play 18 holes 2-3 times a week.
Like all of us in here, you will in time adjust to your “new reality” in dealing with your disease and the side effects of the treatments. But, all in all it can be done with faith in God, support from our wives, families, and friends, and getting quality medical care.
I don’t know much, but My wife and I each have 30+ years working with SSA, including (for me) a 5 year stint doing medical reviews of disability claims.
Your SSDI denial sounds way too quick for a medical decision to have been made on your claim. What was the rationale for their denial of your claim? Are you still working? The first two rules for SSA disability are that you are insured for disability (i.e. have worked in SSA covered employment for 20 of the 40 quarters immediately preceding the onset of your disability), and that you be unable to perform any type of SGA (substantial gainful work activity). Their denial sounds way to fast to have been referred to the DDS (the state disability office that SSA contracts with in every state to do their medical disability determinations) for a medical decision.
The SSA field office cannot make up-front medical denial decisions. They can only make non medical denial decisions based on either your not meeting their insured status requirements, or because you are still engaging in SGA. .Those decisions are not medical denials. They are referred to as technical denials.
In order for a medical decision to be made, your claim would have to be referred to the DDS, and assigned to a disability examiner (DE). The DE obtains all of the medical records you reported in your application for disability. If they can make an allowance decision they may not contact all of your treating sources or obtain all of your lab work, scans, etc. But, they can’t make a denial decision without contacting all sources or obtaining all records directly pertaining to the alleged disability.
If your claim was medically denied, file a request for reconsideration within 60 days of the date of your denial letter.
Best wishes to you! Take a deep breath, and stay positive.!
Hey Dean...that’s really good news! It means your claim has been referred to the DDS to develop. I’m thinking (and my wife does too) that maybe the denial notice you got was for SSI disability. SSI is a federal needs based program with very restrictive income and resource limits. Most SSA offices have you file concurrently for both programs. This protects your filing date should you meet the non-medical eligibility requirements, and allows them to close out your claim if you don’t. It also artificially inflates their workload statistics...but you didn’t hear that from me. 😎
You’re way closer to Jax than I am. I live in Leesburg, FL, just NW of Orlando...140 miles from my driveway to the Mayo Clinic...about 2 1/2- 3 hour drive depending on traffic. For the past 3 years I’ve been under the care of Dr. Winston Tan who is a medical oncologist who specializes in prostate cancer at the Jax Mayo facility. My wife is also a patient there. Between us, we have made maybe 60 trips there in the past 3 years, and spent 2 1/2 months at Gabriel House on the Mayo campus last year while my wife was undergoing chemo and radiation for metastatic oral cancer, and was on a feeding tube. She is recovering well, and are very pleased, thus far, with the care we have both received.
My wife and I are both Mayo patients on Medicare. It’s a little confusing, but if you have secondary insurance (we both have Blue Cross Blue Shield Federal high option that we carried into retirement) the secondary insurance will pay most (and frequently all) of what Medicare doesn’t pay for. The Mayo doesn’t accept Medicare assignment, but some of the doctors and other providers there do. Medicare generally picks up 85% of the approved charges. Our Blue Cross picks up most, and sometimes all, of the balance not paid by Medicare. We have had some out of pocket expenses in the past 3 years after both Medicare and Blue Cross have paid, but all in all having both insurances has been a Godsend for us. They have paid out far more in benefits than we have paid in premiums over the years.
I’m not sure how Medicaid works as a secondary payer, or what their coverages and limitations are, but I’m guessing that it works very similar to private insurance.
To Liletny, thanks for the reply. I too had a very good coverage my first 2yrs with blue cross.. Maybe my total out of pocket cost was $30k during that time. Blue cross paid $800 k or more . Thank BC . Now on the poor mans plan. Medicaid the state plan in Az is my secondary in surance . Medicare United health is first. Mayo Az. said it’s illegal to treat Medicaid patients, even if self pay. Not accepted.I lost my dr to mayo . Now no specialist.. on adt Cruze control for now... hope that i can somehow rangle a pc specialist if or when changes are called for.. or even better yet.. I pray to never see a return of pc to anyone that is lucky enough to enjoying a clear status after enduring treatments.. For those in the heat of the fire. I pray they escape that hell. Even if for only years , and not the decades that we Had foreseen before APC. Any years not in a hospital or neither in brutal pain should be not be taken for granted. Take care..
That truly sucks! And it’s part of what is wrong with the health care system in the USA.
Do you live in AZ now? It was my understanding that the Mayo would accept AZ Medicaid if you are a resident of AZ, but they do not accept out-of-state Medicaid. Same thing with their facilities in MN and FL. I think the Mayo in Jax, FL treats some patients (Florida residents) with FL Medicaid. If you’re an AZ resident you might want to talk to a manager or supervisor in the billing office there.
There’s a section in the Mayo website (you can Google it) on “Billing and Insurance at Mayo Clinic” with a section dealing with Medicaid.
Do you still have your BC insurance coverage?
I truly hope and pray you can find a MO who is a PCa specialist who takes Medicaid, or that the Mayo will reconsider its decision. Meanwhile, I will pray that your ADT continues to keep the monster at bay for a very long time.
Since my Stage 4 PCa diagnosis I take nothing for granted. Everything, everyone, and every day is a gift.
Mayo in Scottsdale does not accept me . I have United health care hmo for Medicare and Medicaid is united health care community plan AHCCS or. ARIZONA HEALTH CARE COST CONTAINMENT SYSTEM ... “Cost Containment” meaning the cheap route. So no mayo for me..
I was given a somewhat similar dx over 4 years ago, click on my profile to see what I’ve done. I had no problem getting SSA disability, although I continued working for a couple years after dx, be sure to let your doctors know you are applying, mine have been very supportive. Get with a medonc who specializes in PCa, learn all you can, be your own advocate and pray hard, God works miracles.
to Dean, take a big deep BREATH. Ok now forget about Davy Jones' Locker, you're going to be around for a long long time. Do not tell your mortgage company about your health, it's not their business. Don't short sell your house, hold out for good price and don't mention your health to any real estate sales people. As far as telling your children about your situation, it depends on their age and their personalities. You will have symptoms from taking meds which will keep you around so you can still argue with you wife (we all do). Remember to laugh cause it's a great medicine. Keep in touch with us...
Dean. Sorry for the monster. Stage 4 here 20 months ago . At that time my doctor said I had a 50/50 chance of 5 years, that being said I read on here posts from guys that are 10-20 years past that date. No one can really say how long 😢. Just a suggestion here , make your peace, bring your family close, write a log, talk and cry with your wife. Don’t panic. Don’t lose weight eat anything you can your body needs strength to fight this monster. There are a lot of guys on here that can say it better but stop and breath a deep breath and get ready for the fight of your life 😡
Larry...I have to say I am at more peace right now than I have been in the last 30 years of my life....It took someone telling me I have cancer, to make me stop and smell the roses..I hold my wife's hand EVERY second I can.....we went to beach yesterday and just sat and talked under a umbrella....it was a great day!!
I am ready for this fight now...this beast will never win ..It may take my body but not my who I am....
At the beginning of the Army-Navy football game, the coin toss in made. The Navy captain shouts, HEADS followed by the Army captain shouting LATRINES. Keep Smiling!
You do not need to suffer with the night sweats and hot flashes. Please call your urologist and ask for a prescription for venlafaxine. I got relief the same day I started it (75-mg). It stops 90% of those annoying sweats and hot flashes. Now, it is the only anti-depressant that seems to do this. It is also hard to come off of so plan to take it forever. It is cheap, a generic. It works.
Holistic practitioners agree..I follow this as much as I can. I do like a deep cold water wild salmon or any wild caught fish every couple weeks. Miss eating lots of fish. I ate my weight in sushi fish and chicken each yr. no more. Digestion is much better.
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We'll get through this shit. I'd be lying if I said I wasn't nervous (ok scared) about the operation. I don't want to be a depends baby, but on the other hand, at least I'll be around to whine about it. "Great, I'm going to be the old guy smelling like pee"...nice....
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