First the dumb question: I've followed several members here whose cases appear similar to mine, but I can't find a link to a summary of the activity of those I'm following. Am I missing something?
Now the good news, I just had my second infusion of docetaxel yesterday which came with a shot of Xgeva on the side. It went very smoothly, unlike the first infusion. Of course, before the infusion they drew blood and my PSA is already down to 0.19 from 216 at diagnosis in October. I've been putting the details about my diagnosis and treatment in my profile, so see that for more info.
About pain: I've had some starting in ernest a couple weeks before my diagnosis. It ironically started being noticable just after making my original urology appointment. It's generally been improving since treatment began, but I've also been getting unpredictable flare-ups during treatment. It's also a bit strange because it usually hurts to sit or drive or ride in a car, but I can usually go for a pain-free three mile run when fatigue allows. Is it reasonable to expect the pain to go away as treatments progress and the bones have a chance to heal? How long does this usually take? I'm hoping for a symptom free 2019 given the initially impressive results in my blood tests.
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My situation is similar to yours. I started off with a PSA of 463 and hit a nadir of .19 at the end of my chemo treatments. I started chemo about a month after diagnosis and went from opioid pain to no pain about half through my chemo infusions. My pain eventually went back up a little as I became castrate resistant. It has been very slowly going down with Zytiga. My PSA was undetectable last check. The pain levels for me go up and down, but overall it seems to still be improving. Sitting a lot does often make it worse, but also standing in place for a long time can do that too. I think a lot of us here have pain that goes up and down with occasional flair-ups. The mets do heal up to a certain extent, you can see that when comparing my initial bone scan to the second on taken at 1-1/2 years after diagnosis.
It sounds like you are having a good response so far and hopefully that will continue. The initial improvement in pain for me was fast, but It took a long time for my pain to get better from there. It's a slow process, but I look more at how tolerable it is overall rather than whether it's getting better. I know it's unlikely that I will ever be completely pain free all of time, but my quality of life now is excellent and I can do the things I enjoy. Occasionally I take an Ibuprofen when my lower back hurts too much. That works fine for now and now is all I have.
I'm on Social Security Disability since diagnosis. At stage 4 you are eligible and I didn't want to work until I drop. There is also there is a waiting period so waiting too long may mean you won't get it. I'm self-employed, but do occasional work within the specified limits of SSDI.
When I clicked on your name above, it brought up all your previous posts and your profile. The search bar on this site is worthless. You can also use the "site:" command on google:
Yes. And I would file now. Refer to Gregg57’s reply. My wife and I have each worked for Social Security Admin. for over 31 years (both now retired), and I spent 5 years of that reviewing disability claims. If you are not working... even if you think you might be able to return to work...and you are Stage 4, you will likely get approved for SSDI. But, it may take them from 90-120 days to process your claim depending on how quickly they are able to obtain the medical evidence. Sometimes they are done in a month or less.
The advantages are: (and I’m really simplifying this):
1-The date you file claim is material to when they find you disabled under SSA rules. They can potentially go retroactive up to 17 months from your filing date, depending on when you stopped performing SGA (substantial gainful work activity) to establish a disability onset date (EOD). After a 5 month waiting period from your EOD you would be entitled to cash benefits equal to the amount you would receive at full retirement age. The sooner you file, the farther back they can go.
2-If you have minor children you may be entitled to auxiliary benefits for them, and possibly for your spouse.
3-After you have received cash benefits for 24 months you will be eligible for Medicare. I’m not sure about your company, but many company insurance plans require employees on their company disability to file for Social Security Disability so that Medicare will eventually become the primary payer, and your company plan would pick up the balance.
Note: There are lots of rules about what happens if you return to work during the claims process or after your claim is approved. You can research them (and other SSA disability topics) on Social Security’s website, ssa.gov.
4-if for any reason your claim is denied, you have appeal rights. The sooner you file, the earlier your application is protected by these appeal rights.
5-if your claim is approved and you attempt to go back to work, you have a 9 month (sometimes longer depending on your level of earnings) Trial Work Period (TWP) and possibly an extended period of eligibility (EPE). If you again are unable to to work due to your disability during your TWP, it can be written off as an a Unsuccessful Work Attempt, and you can get your benefits resumed fairly quickly, and without having to go through the filing process all over again.
I really can’t think of any negatives other than the time it will take you to complete the application and disability Report.
Thanks for the info that may help a lot of people here. Went through all this when wife applied for disability. She hired a company to represent her (against my wishes). Everything went really smooth (takes a while) and the cost was way less than I thought it would be, they are limited to a certain percentage, and it was paid out of the back payments owed. When the wife went against me she was almost always right. She knew that path would save me another ulcer. And it did.
It’s always a good policy to listen to one’s wife...and do what she says! 😎 My wife is pretty much always right. And (unlike me) she is pretty much a walking encyclopedia of Social Security. She still gives seminars on SSA and Medicare as a consultant for her retirement job with BlackRock. So glad to hear you listened to your spouse, and that she had such a good experience with her SSDI claim. That’s a big load off of you both, and we already have enough things to worry about. Happy New Year to you both.
An update on SSDI, mostly for anybody reading this years from now: In April my job-provided disability benefits will transition from short term disability to long term disability. The long term disability plan does want me to apply for SSDI, but I have a year to do that from the start of my leave. Hopefully I'll be returning to work this summer, so will only need a few months of LTD and won't need to go through the SSDI process.
My works long term disability insurance required that I apply for SSDI. They even provided an agency to help with the application. But I didn't need that help. with mcrpc ssdi approval was quick(under 1 month) and fairly straight forward.
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Docetaxel/Taxotere stopped after 7th Infusion
A year ago today, still waiting for some good news.
My Cancer Is Going Strong & A Warning
Update on Pluvicto Treatment and my New T-shirt for the Next Infusion
Lu-177 does not seem to be working :-( 
