Advanced Prostate Cancer
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My story of CRPC

My story of CRPC

Hi All,

I'm new here, but Prostate Cancer is old hat for me. I was diagnosed in 2009, and had the DaVinci Prostatectomy. A year later my first introduction to Lupron and 13 weeks of Radiation Therapy. I was clean until early 2012, and then went on Lupron full time. In 2016 that began to lose efficacy, and we added Zytiga and Prednasone.

Basically I am no longer adult in my body. I've lost the hair under my arms, and am fully menopausal. I find I've no libido, surprise to no one who has dealt with this and the drugs we use to keep it dormant. The mood swings are mostly for a few weeks after the Lupron shot, however I can cry at just about anything now.

I've gotten past the fact that I don't care about sex, and even if I did couldn't perform. What I cannot get past is the fact I'm 60 working in a job I do not like, and will in all likely hood be working until I get bone mets. Only when the pain is too great, and my time too short will I be able to retire. Even then I fear I will bankrupt my wife's retirement due to the cost of medications and care.

How do we deal with this? What do you do?

Thanks,

Bees

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Z,

The way I understand it from posts by others, once you have mCRPCa you can qualify for social security disability, you just have to apply for it

Gus

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also you can get help with the copays...most guys pay $0 - $300 a month....check Zytiga Mfg website

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thanks Gusgold!

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Are you truly Castrate Resistant at this time? If so---what is your PSA today--is it under control---less than 1, I.E.? If your Zytiga program is working with Lupron your numbers should be low!

Many men here can commiserate with your menopause situation---the two years I was---was not pleasant, but was bearable, with lots of exercise, weight lifting, deep breathing outdoor exercises, and a high protein low carb diet--supplemented with Whey Isolate Protein Powder, same stuff the muscle builders use---even though I did not have any T as you do not either right now. You got 9 years under your belt right now--that is a blessing---some here do not see their 6th year. You have plenty left--this Pca is not going to get you any time soon--is my Prayer.

Nalakrats

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Hi Nalakrats,

The Oncologist states that I am CRPC at this time. There has been small growth in 4 or 5 lymph nodes. However yes the combination currently keeps my PSA under 1. The highest it has read is 0.4.

You are right that I'm still here and that it is still dormant is a huge blessing. I will be able to see my oldest son marry this July! I know I'm beating the odds, and I'm grateful for every day!

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Look for a future post of mine on Anti-inflammatories. Might benefit you.

Nalakrats

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Look for a future post of mine on Anti-inflammatories. Might benefit you.

Nalakrats

I believe, your future post may benefit me. I look forward to soon reading this post.

Rich

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What's this about menopause situation? First I've heard of it. Please enlighten me. What joys have I got to come?! (dx Oct 17, 6 months into ADT jabs, had last round 6 of docetaxel 2 weeks ago, so comparatively early in the PCa cycle)

rpol

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Hot flashes!

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hot flushes, had plenty of those! My wife thinks it is hilarious.

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Gus is right , If you have a rising psa after just Lupron you should qualify for ss disability, you would get the amount you would get at full retirement age. Also you would be eligible for medicare 48 months after you get your first payment, which is 6 months after you stop working. We have all been through these things you speak of, it gets better, all the best, Dan

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Thanks Dan! I will look into this

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Dan,

do you have to stop working or can you work with a income limit

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Gus,

It is my understanding you can make about $1,000 maybe a bit more a month, and unearned income is ok, as in they allow you unearned income Does not count against what you make working. If you have rental properties as long as you do not do the maintenance yourself.Or whatever your unearned income is from is ok as long as it is not earned through working. If a person or married couple meet the income level, (not sure what it is) you can get medicaid, and that comes I believe immediately with health insurance.I think to get medicaid you can not have any savings to speak of and certainly no unearned income.

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In most states, the asset limit for Medicaid is $2000.

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Individuals on SSDI are elyfor Medicare 24 months after the date the are entitled to SSDI.

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You're bumming me out dude! The best advice I can give is to take one day at a time. None of us know what is around the corner in terms of treatment. Best approach is to hope for the best, take advantage of all the current advancements in treatment which are pretty darn good, and don'y worry about the distant future. I know this will sound lame but I have found that practicing meditation that gets you to think in the present instead of the future has been life altering. Mindfulness they call it.

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Man you have a long way to go. I was diagnosed in 2001, had radiation and Lupron, then Zytiga and now Xtandi. Bone mets all over the place and lymphs in pelvis and throat, PSa 4.5, but guess what .... I'm still here and enjoying life. The alternative doesn't bare thinking about, but I am a firm believer in mindfulness meditation.

Cheers from Australia.

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Hi Kezza

Where in Aus are you? I'm in SA on the Eyre Peninsula. You're only the second Aussie I've seen on here. Still the best site I've found so far by a long shot. Hang in there cobber, stay positive and strong.

Cheers

Thevvy

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Thevvy

Do you know anything about the Lutetium 177 treatment. I understand you can get it in Sydney. (I am in NZ)

Keen to learn more about it and hear from anyone who has tried it after Zytiga stops working and my mets grow.

Howard

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Hey Boseley

Lutetium 177 is available at a couple of private clinics in Aus - have a look at the Advanced PCa site jimjimjimjim.org for more info. There is a clinical trial underway comparing it to cabazitaxel, so if it comes up trumps it could become a mainstream treatment for MCRPC, but don't hold your breath.

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Nope ... sorry cobber ... not heard of that one ....yet ....

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Brisbane mate - Redcliffe in particular. Yes I have PSMA PET/CT scan scheduled for two weeks time, so lets see what that throws up.

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Good luck cobber. Been to Redcliffe a couple of times when I was doing Oversize Escorts/Piloting.

Hate your Toll roads up there tho' ... we're a bit spoilt and don't have any in SA .....yet!

It's amazing how a positive outlook affects your outcomes ... seen it sooo many times over the years.

Keep up the good work, and stay strong

Cheers

Thevvy

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17 years! Fantastic!

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Did your Doc ever explain why all the bone mets when you were on Zytiga and then Xtandi

Gus

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Hi Zen,

I'm very similar to you. First diagnosed in 2007, prostate removed by Di Vinci robotic surgery in January 2008.

I also have no hair under my arms, also no hair on my butt.

I have long ago given up any thoughts of sex. I have a pump which works fine but I have lost the will to use it. I'm now on Lupron and Xtandi plus I take Metaformin and Avodart. I do exercise in the gym three times a week and run twice weekly.

However I do have days when I feel completely drained of energy.

My latest psa was 0.4 down from 3.8 in January. It's now a question how long the Xtandi works.

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You might ask your urologist to prescribe venlafaxine, an antidepressant that suppressed about 90% of severe “sweats” caused by the Lupron. It was a blessing in my case! Be aware that it is hard to come off of, but that may not be an issue in your situation.

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i agree w the other guys re you can have mets and live a long time, but i have questions on the ssi disability bc i thought you have to not work at all for one year to qualify?

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Look up SSDI rules regarding “substantial gainful activity” to understand eligibility for the program. Look on SSA.gov.

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I just recently completed the SSDI application online and was approved in 21 days, but I was a slam dunk. I am mCRPC and had bone mets like a polka dot dress when diagnosed. It was so widespread they didn't even consider prostate cancer and did a biopsy in my back.

That biopsy was the slam dunk. Do you have a biopsy of any of your lymph nodes showing prostate growth, that would give you the proof in writing. Other wise, since you went on Zytiga in 2016, you would only have been able to get that approved through insurance being CRPC witch qualifies you for SSDI but the process can take up to 6 months.

To get approved in 21 days, I was able to answer one question which changes everything.

"Will your diagnosis result in death?". I'm not positive it is for everyone, it is for me. Answering this question yes gives you the "compassionate allowance" advantage meaning you have to be processed in less than 30 days. I must admit, everyone was very nice that I spoke to.

The application takes about 2-3 hours to complete and you'd better have every med, doctor, first born and log of hair clippings ready when you start. It isn't difficult, it is just complete and concise.

Here is the link to the SSDI website that explains the qualifications for prostate cancer:

secure.ssa.gov/apps10/poms....

All they can say is no, but I think you may qualify and may also qualify for back pay.

I didn't know any of this until I started reading this website and joined it months ago.

Good Luck.

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Thank you TenscTexan! Have to say this is quite a great community. I only wish I had found it earlier

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I was able to do it with just a phone call, and they called me back asked for my Dr.s phone and info, and called me back 3 or 4 weeks later and said I was approved. You can see my history by clicking on my picture.

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First of all CHILL OUT! So you're in a job you don't like...hmmmm that's why they call it a JOB. Most people also hate their "Just Old Bullshit" that they have to put up with, so join the crowd. Look at the glass as half full and thank God you've not at room temperature. There are many warriors here who would trade places with you in a heartbeat. So "LIVE" and` "LAUGH" every day. Well those are my thoughts and recommendations.

Good Luck and Good Health.

j-o-h-n Wednesday 05/02/2018 1:58 PM EDT

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Hi John

Words to live by

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