New to the forum, posting for my husband

Greetings everyone,

I have been lurking on this forum since discovering it last fall. My husband (I'll call him S.) was diagnosed on July 11 with PC and "innumerable" mets to bone. He started on Eligard & Casodex and has undergone Taxotere. His oncologist is pleased with the results, although PSA seems high still at ~1.48. He has had a single point of rather severe bone pain for over a year (it's what got him diagnosed) and is preparing for "palliative" radiation to see if it can be helped. S. has been on narcotics for pain control and it's very wearying.

Our oncologist is a great guy, very no-nonsense and minimal ego issues. However, he's a bit passive when it comes to suggesting treatments--if I ask him about something specific, he'll tell me his opinion, but other than starting Taxotere right away he is following the standard treatment of care. After reading more about the longevity of men with advanced cases, I feel that it is worthwhile for us to be open to the possibility of my husband living with this disease for some time. Your stories have been very inspirational to me!

Hubby isn't really interested in reading about PC, and I tend to go a bit overboard on the research end, but we DO meet in the middle: we both know that quality of life, not just survival, is what we are both seeking. I just finished watching a preso by Dr. Kwon and really took to heart what he says about taking advantage of the "valleys" in the course of this disease, and treating aggressively at those points.

My guy is very strong-willed and has a great attitude. He also has a very strong spiritual practice and a clear view of himself. Chemo was tough, our onc suggested an further two treatments but S. said no--but he is not averse to considering other treatments down the line.

The question is, of course, what treatments? ADT is still working, so second-line treatments are probably not yet appropriate. I have been reading a lot about Xofigo and think, well, why not try to knock back the mets? The rad onc thinks it might be appropriate, but the regular onc cautions that it can make further chemo problematic if myelosuppression results.

I am also researching the idea of treating the primary tumor, which seems to be a logical step in my mind.

Thoughts and feedback would be greatly appreciated!

Hi Adrienne,
Welcome to posting. Since you've been lurking for awhile, you know that TA is the best source. I hope spot radiation and/or xofigo brings S. some pain relief and better QOL.
Gary just recently discontinued all narcotics, as the bone mets have become less of an issue. Hopefully your DH will soon be rid of that problematic one.
Beth

Thank you Gremlin, Celebrate Life, and Tall Allen. Glad to "officially" be part of this community ;-)

Tall Allen: I have been reading the New Prostate Cancer InfoLink religiously, thank you for your excellent posts! Much of what I have learned, I have learned via links and info on the blog. IMHO it is unfortunate that current treatment protocols remove so many options for men in the pre-MCRPC stages of disease. Right now his mets seem stable, at least from what they could see on the bone scan 6 months along, but wouldn't it be wonderful to be able to do something before the disease progresses! I will see what options are available. Oh BTW, we are in the greater Seattle area... lots of top-notch cancer resources around here, although our insurance is somewhat limited as it is thru the ACA Exchange. I will definitely let our docs know we are interested in clinical trials.

Celebrate, congratulations on Gary's getting off pain meds. Best wishes for you both.

Gremlin, great link, thank you. I will save it in my "studies to share with the docs" folder.

Thank you gmoose2. Steve just got word he starts radiation tomorrow. We don't want to get our hopes up too high in case it's not successful, but stories like yours are supremely encouraging! Did you feel the relief right away, or did it take some time for the pain to mitigate?

In Seattle, if you can get in to see Celestia Higano at UW Seattle, she is certainly among the best MOs, and they are doing a lot of clinical trials there.

When drug companies sponsor tests of new drugs, they often start with the sickest folks because survival benefit takes much less time to prove. Once the FDA approves the drug, and the pharmaceutical company starts getting a return on investment, they begin to sponsor trials for earlier use. Such trials take a lot longer to prove efficacy. Unfortunately, it's not always true that earlier start gives better results. Some drugs like Provenge only seem to have an effect after ADT has been going for awhile; Taxotere is only useful in HSPC when the tumor burden is high. We have a lot to learn about optimal timing, and which therapies combine best. It's not necessarily the case that something that works well for mCRPC will also work well for mHSPC.

Debulking is problematic -all the studies so far are retrospective. That means that, instead of random assignment to one therapy or another, patients were specifically chosen for a certain therapy based on their unique situation (this is called selection bias). Thus, an older man with significant comorbidities might get RT, while a younger man who is otherwise healthy might get RP, and the sickest men might not get either kind of debulking. Therefore, relative survival on a retrospective study reflects disease characteristics of patients rather than the efficacy of treatment. So we can't really judge based on on such retrospective reviews what works best. That will take a randomized clinical trial like the one at MD Anderson.

Adrienne,
There's no reason to think Steve won't survive to get benefit from Medicare, of course barring some weird mets or mutation or an errant bus. But for the foreseeable future, Steve has a whole lot of options at his disposal.
It's been over two years now since it appeared that Gary had run the gamut and there wasn't much left to pursue. We are planning to visit Yosemite for Easter weekend. Gary won't be hiking El Capitan, but he's looking forward to going to see it.
Plan some good times together. It helps to have stuff to look forward to. We have gone on many short and somewhat longer trips since dx, and in 6 and a half years, we only had to cancel one. And we made that one up a year later!
If you have time, read the thread "letters to the newly diagnosed" They are very inspirational.
Write down your questions as they come up for you. I should follow my own advice, but Gary's MO doesn't have much patience for answering my questions, and my DH for asking them. That's why I so value this forum!
Beth

AdrienneA,

I cannot say I hopped off the treatment table and was fine, but it was not long at all. It went away very quickly, to the point I was able to resume "normal" activities much more easily right away, essentially. Frankly after about 3 or 4 of the treatments, I felt great and questioned in my mind if the rest of the 10 were even necessary, but I happily went along since I was doing so much better.

This was not the area of harsh pain for me, but rather a continuous, low-grade, yet debilitating type of pain. For me, the treatment was important since it was in a dangerous location. Spinal mets can and DO end up afflicting some men in terrible ways, so I was very glad to knock it down in that area. My worst pain actually came from rib mets, and drugs basically have that under control now for about a year. The bonus to having a greatly improved QOL is terrific, though not perfect since I switched to Zytiga around the same time. It is working superbly for me, but I have found it saps my energy so much more than Lupron/Casodex did that I don't have the full benefits from the radiated spine. There is so much to balance with this disease. Anyway, I hope you guys have great success with the spot radiation too.