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Is anyone here with advanced PC? Stage IV-D2 (aka M1C)

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Posted 2/19/2017 8:19 PM (GMT 0)
I'm having a difficult time negotiating my way around this forum. I would really like to talk with people who have...or are caregivers for people who have advanced, wide-spread metastatic prostate cancer. If you fit, I'd appreciate knowing more about whether you are stable or if your PSA is increasing, what treatment you have had beyond castration drugs, also about symptoms and how you are dealing with them.

My husband is stable at the moment, but has been on castration treatment meds for some time now. With wide-spread mets, even in his liver, I know the statistics are not good for him. I can cope better with what's to come if I have a clearer idea of what to expect.

Would really appreciate your input if you have advanced, metastatic PC.
Posted 2/19/2017 9:22 PM (GMT 0)
PNWcarol - I've added you to the Gleason 9 Crew roster, on the thread we have on this forum for those facing this diagnosis. It's organized by a G10 group, a G9 5+4 group, and a G9 4+5 group, all sorted by diagnosis date. Where I could find them, I have also posted links to each person's initial post.

The links may lead you to someone with the situation you're looking for. You'll note there are quite a few people on the list, most doing well. There's hope; no doctor can accurately predict your husband's specific results. We do the best we can with aggressive treatments for these cases, and often there is a good result!

The Gleason 9 Crew -- Part 2, continued.
Posted 2/19/2017 9:38 PM (GMT 0)
Welcome to HW. I'm so sorry to hear about his diagnosis. You seem to have learned a lot very quickly.

There is a long-running thread for caregivers:
www.healingwell.com/community/default.aspx?f=35&m=3539790&p=7

There is a long-running thread for patients with Gleason 9:
www.healingwell.com/community/default.aspx?f=35&m=3182035&p=5

Is your husband a candidate for docetaxel? Older men are often undertreated:

/pcnrv.blogspot.com/2016/08/ageism-in-prostate-cancer-treatment.html

Metastatic castration-resistant prostate cancer in very elderly patients: challenges and solutions

Safety of cabazitaxel in senior adults with metastatic castration-resistant prostate cancer
Posted 2/20/2017 5:54 PM (GMT 0)
Hello Carol,
My husband is 82 now...dx 4 1/2 years ago. His signature below shows his info.

I like this HW site but also have a challenge searching for advanced mcrpc posters. I do use the caregivers and G9 threads as suggested.

REQUEST to admin: A thread of just the current G9/10 names/date and age diagnosed/current age.. nothing else --to use as a "who's who in G9 & 10"! Could that be done? Thanks...

DH CURRENT : Husband has had 3 Xgeva shots (no se's) and 2 Xofigo shots (out of hopefully 6 max hopefully)(no se's) BUT has 1-2 level lower back pain and heavy fatigue through the day.

Maybe tiredness a combo of Lupron, Xgeva,Xofigo?? sad

We will get a second opinion in 3 weeks from the SCCA/HUTCH/UW in Seattle.

Let's keep in touch. Take care . Annie smile
Posted 2/20/2017 7:53 PM (GMT 0)
This link will take you directly to the singular post in the longer thread, containing the only list we have of G9/10 folks. It's mostly just me maintaining this list, with the help of Peter DisAbelard when I miss someone. I assure you it's the only such list we have. It would just make it harder to maintain if it gets duplicated somewhere.

It's organized by G10, G9 5+4, and G9 4+5, and then by diagnosis date within each list.

It has people's names, date of diagnosis, and where I could find them, a link to their first entry post's thread. For current age, I'm afraid you'll have to look at the threads. It's just too much to try to keep a detailed list like that current.

The Gleason 9 Crew -- Part 2, continued.
Posted 2/21/2017 12:49 AM (GMT 0)
Hi Redwing,

Thanks for your reply about G9 list Roster.

I had looked before in the G9 crew part 2 thread but now realize I needed to go down 4 POSTINGS AND THEN (Hurray! ) I found the lists you have mentioned (and maintained.)

Just what I wanted ..will use to follow other G9/10 posters.

Thanks so much for maintaining this roster . And thanks for your patience in helping me FIND the roster after I clicked on G9 crew thread.


idea Annie
Posted 2/21/2017 2:57 AM (GMT 0)
Anniesea - glad you found it! The thread has sort of drifted over time as to its purpose.
Posted 2/21/2017 5:48 AM (GMT 0)
Annisea and Carol,
I would love to communicate more with caregivers who are going through or may have to go through our many experiences. My DH Gary has been beating the odds for so long now. Not because he has outlived his dx, but because he keeps doing so well with mets widespread, including his liver, and a very high PSA for a long time.
My email is open and you just need to click on coloured envelope on left. Also, I will post on Caregivers Corner tonight so it comes back to the front page. We need some more action there too smilewinkgrin .
You can read Gary's stats in the signature line.
Keep posting! I so value the support I get here, and I feel like Gary and I have just about seen it all, and I think he's been through it all when it comes to P Ca with mets.
Beth
Posted 2/21/2017 7:46 PM (GMT 0)
I have to admit I've had a terrible time navigating the forum threads, especially returning to them after going to another thread. I'll keep trying - (tech. challenged!)

Thank you, Redwing for the Gleason 9 group link.
Thank you, Tall Allen for the other links. I will check them out too.
Thank you, anniesea for your welcome.
Thank you, celebrate life for the offer. It would be good to talk with more caregivers.

My husband has coronary artery disease with bypasses, stents, & now a pacemaker. He must self-cath 24/7 and has more and more trouble doing that due to neuropathy in his hands. He is on Pradaxa (blood thinner) so a big fall risk. I have to help him increasingly with his toileting. He also requires assistance showering & sometimes dressing. He cannot walk, but can transfer & uses a power wheelchair. His autoimmune neuropathic symptoms are worsening. He can no longer prepare any of his meals but can make himself a cup of tea or get something to drink.

For now taking or not taking chemo is a question we may soon face and a quality of life concern.
He has signed a limited DNR - no resuscitation if he has no pulse and is not breathing. He is worried about nausea & toileting accidents if he cannot get to the bathroom on time. (It takes him a long time to get to his wheelchair and go to the bathroom) He's concerned that his heart may not handle the side effects.

In 2007-08, he had two years of monthly IVIG infusions for his CIDP. In 2009, he had two rounds of Rituxan for mantle cell lymphoma. It's an engineered antibody treatment with few side effect beyond fatigue & flush reaction, so I know he can tolerate some med. side effects.

So, whatever you can share about your experience with chemo drugs, especially as it relates to his current limitations & concerns, that would be helpful.
Posted 2/21/2017 9:07 PM (GMT 0)
PNWcarol - one suggestion for navigating the sea of links you're finding is to create a folder for each topic. Then drag the link into the folder.

You can save every one of them as a link directly. I have lots of them saved that way.

I have a PCa bookmark folder, and subfolders within it for many topics. Each of those folders contains links to various threads, or websites, or studies found by web searches.

It's easy to become overwhelmed with information, and frustrated when you can't find it again!
Posted 2/21/2017 11:10 PM (GMT 0)
Anniesea, I emailed you. It might get caught in spam. The domain is 'ourbluemarble'. - Carol
Posted 2/21/2017 11:12 PM (GMT 0)
What a great idea Redwing! Thanks. I'll do that.
Posted 2/21/2017 11:16 PM (GMT 0)
Tall Allen,
I don't think he's taken dosetaxel, certainly not any chemo...just the Lupron & Xtandi to lower and to block testosterone action. Given his general state of health, I'm doubtful he will choose to take chemo. As I read posts, it doesn't sound as bad as I thought, however. I don't know if he will reconsider.
Thank you for the links.
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