it’s here. After 11 1/2 years on zoladex injections and Xtandi followed by Nubeqa, husband had a PET scan that shows numerous spots on spine, breastbone and one lymph node in groin. PSA was undetectable for years, then .1 and .2, which triggered the order for the scan. The PA told him he has 1-2years, but the oncologist tells us it’s “not entirely bad news” and that depending on therapies, he might have more time than that. We have been together since we were high school seniors and I am beyond devastated. Looking for hope here.
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That's chemo. I have plenty of bone mets and have had since 2018. Hang in there and get a few opinions from Radiology Onc and your onc is right, it's not entirely bad news. Cheers
My opinion is that you can pretty much dismiss what the PA said. Your husband may very well live for many, many years with you by his side. Tall Allen is the expert here so pay close attention to anything he says. Here is a pretty basic article on chemotherapy from John Hopkins and it discusses doxcetaxel as well as other chemo. drugs.
Listen to Tall_Allen and setup appointment with oncologist and also talk multiple of oncologist and understand the situations properly. Also setup appointment with Radiations oncologist as well
I have talked to so many here that have lived for years with recurrent prostate cancer in the bones. First, has he had genetic (Germline) testing? For example, if he is BRAC1 or 2 positive, he may respond really well to a Parp Inhibitor. There are so many things that may be helpful. Sometimes Docetaxel can desensitize the cancer to the ADT and second generation ADT's like Zytiga, Xtandi, Erleada, etc... Also, there is Cabazitaxel chemotherapy if Docetaxel failed, Lutetium (like Pluvicto), and immunotherapies. Of course, if the mets can be safely spot radiated combined with one or more of these other treatment options, it may buy a lot of time. If a met could be biopsied for mutations, all the better. Please be proactive and do not give up hope. I have learned a lot from this forum when my husband became oligorecurrent in his abdominal lymph nodes. Please keep us posted!
Don’t think he had genetic testing. It’s been 11 years since this journey started.. His father died from PCA, so likely genetic. 🤷♀️ Thank you for your expertise. More info on why I need to have further conversations with his med team.
just IMHO … you can’t go by the met load. I’ve got Mets ( cancer spots ) from my skull all the way down to my toes. My nasal cavities are a forest of spots and down to my legs and toes that are noticeably disfigured by Mets. “ They “ said I’d be dead in a few weeks and that was nearly 6 years ago. Now I’m not saying I don’t have a few ( ha ha ) issues here and there, but here I remain …. long after I was supposed to go. I’m just one of hundreds , probably 1000s of example here. Not saying hubby isn’t serious ….but it’s just as likely that he has significant time remaining too. No one, not even your medical crew , can say for sure.
Right on K! None of us know when we are leaving unless we are psychic and even then psychics are not infallible. Why worry? Get living I say…. until Geronimo!💜
No worries - be happy. ( none of that @#$& seems right does it lol ) ima just hanging around to irritate all those people - family that came thru and put postit notes ( with their names on it ) on all my stuff 😂😂😂
Rotflol 😂😂😂😂😂 …… good one buddy. That was funny. Yea sure , I’ll put your name on top of the other ones lol. No problemo. Next problem is I gotta croak first lol. 😂😂😂. We all want a post it note on that tin of that special “ lasting lard “ ( lard in my case, might be less lard and more seasoning for you ). 😂😂😂
Rotflol ….. I actually got out on the etrike again yesterday morning for first time in probably 2-3 months. It’s been so mindbending hot outside , it’s been nearly impossible to ride without heat stroke. Not feeling my fluffy best as well. Lol getting a fall heat break now, gonna start getting out a lot again.
I rode on a very nearby piece of the cross city hike and bike trail and it was thrilling. Fresh air and outdoor freedom , wonderful. Ima not going anywhere buddy …. I got “ stuff “ I still wanna do, despite my mobility issues ( screw that ) … rotflol.
lol ….. yea that’s right …. We don need no stink’in grim reapers around here , ….. dunno tho, I seriously doubt it pays any attention to anything I think lol.
Ok , I’ll tell you another , better, happy story . I’ve told this a few times and some here will probably groan a bit…..but: My old friend ( 55 years friend ) Mark ….Urang on this group ( passed a few years ago ) …. Caught our bug way back in the times when treatment drugs were few and limited treatment and almost medieval in ways ( compared to now ). Mark had stainless steel implants all up and down his spine ( his head leaned over sideways ,once, while he was out driving ), numerous joint repairs / replacements , paralyzed below the waist for a while and a lot more. “ they “ said he would croak many times and he lasted 23 years , despite what they thought. And even when the V.A. ran out of treatments they sent him home to home hospice ( his psa over 2000 ) with a bushel basket of fentanyl and morphine , saying his end was near. Well…. Mark puttered around his garden and played with his computers for THREE more years before succumbing. Another great example that shows that no one knows when they will finally croak. Oftentimes we have a good idea but life is resilient and human will is strong ….
A big warm hug out to you ….. of course cry when you need to, it’s a release for all of us,
your sisters and brothers here have your back in camaraderie and emotional support as well. Most all of us could probably cry on demand , but I’m sure most of us try to think of time remaining with our loved one ( the fact we still have some ) , and having all the great QOL times possible. Making those “ great “ positive memories you will move forward with in life. I’m hoping you guys have a ship load of additional time to build that QOL scrapbook and stuff it full.
These stories of survival and will to go on despite such crappy odds are truly inspiring. Seems like you guys with the WILL to live despite the odds are on to something the medical world hasn’t grasped.
It looks like your hubby is somewhere in the range 78-81? Don't know why the PA said that.....some study? Let's be real......I'm almost tht age, and there are many other maladies that may cause our demise when we reach this age....specifically, cardiovascular problems. Follow up per the many good suggestions already posted here, and enjoy what each day gives you ...who knows how many more any of us have!! And congrats on the good 11 years you've already banked!!
Thank you. Yes, he is 78, but until PCA and the drugs, he was Superman. So this has been a shocking change. To top it off he had a botched hip replacement 2 years ago that has greatly impacted his activity level.
Accept the diagnosis but not the prognosis - the best advice we were given
If you look I posted some case studies here a week or so ago.
My Dad is about seven years on from discovering Mets with hormone sensitive cancer- it may now have become resistant but there is so much happening in this space.
My husband was diagnosed in 2017 with multiple bone metastasis. He had Docetaxel and lupron to start- then lupron, zytiga plus prednisone since. He's had a couple of shots of sbrt as well. He works, plays, very active. There's definitely hope for yours for more than what they told you.
I was diagnosed with over 25 Mets. That was 6 years ago and I am doing just fine. Try to live each day, worrying too much will hurt both of you. Cheers!
You are so right about worrying— it’s a killer in itself. Thank you and may you have many more years.
just like many of the warriors here I’ve got Mets all over the place and have had them for at least 7 years (11 years now with PC)…starting Monday I’ve got 25 proton beam treatments on 5 spots scheduled …starting at my skull down to my pelvic area….5 treatments in each area….the oncologist says “we’re just putting out the fires”….so maybe look into Proton for the bone Mets….
Our doc never mentioned proton beam treatments. Thank you for giving me something else we need to investigate. May you continue to have success with it.
It’s not my first time at Ca Protons doing treatments on my Mets…I’ve had 30 other treatments…a 10 and a 20…I’m sure there’s Proton machines closer than Ca…But good excuse for a visit …Once you start it’s 5 days a week…,Every day….Sometimg must be working as I’m still here…86 years (almost) young….
Husband same age with bone Mets too but responding well to Lupron and Erleada. PSA declining steadily. Stay active, exercise, enjoy every day. We will get more than two years dammit! All the warriors here attest it is possible. You found a great place for information and support.
Don’t forget the little blue pills! As T is reduced the need for this assist increases. Amazing benefit though is a big Australian study showed men on viagra were substantially less likely to develop Alzheimer’s. Seems the increased blood flow to the fun part also increases blood flow to the brain. An Oxford study this summer says this was why the positive correlation.
Don't listen to such negative prognoses. With the situación that you describe your hubby will most likely be ground for decades. In most cases, PC grows slowly. But do exercise with weights to protect the bones. That's the most important thing You can do
Thank you! I will tell him about exercising with weights. He used to be insanely fit. But the drugs over the past years have given him a belly and man boobs. But, hey, that’s least of our worries.
Read my bio in which I explain how I rid myself of metastases through my own home lycopene and heat therapy. Of course, follow your physician's advice, and what works for me might not for others.
Keep your hopes up, there are several treatment options still left for your man. And it sound like there are treatments that your docs haven't discussed with you yet. As you move forward, keep close to this forum. I have learned so much more from the folks here than I ever have from my care team. In fact, I have been able to point them at developments that they weren't aware of.
Don't know if your husband has had antiresorptive therapy of some kind (bisphosphonate-(Zometa) or denosumab (Xgeva) recommended. My late dad on diagnosis his bone scan lit up like a Christmas tree. On ADT and Zometa most of these mets disappeared on scan. He lived close to another 15 years and when he went, it was NOT the PC that got him.
Only one met and they gave you 2 years?…bullshit!..,go get it zapped and join the rest of us who have been dealing with multiple Mets for years…..”Dead man walking “ is just a line out of a movie…
Whenever I've been in a state of progression these past ( 5 years in October) the anxiety and even doom feeling comes around so my feelings go out to you.
He's just now diagnosed with mets and has already been thru Xtandi and Nubequa.
I was newly diagnosed with mets, skull to ankles too many to individually be noted/described by the Radiologist. PSA 1,621.
He has more treatments to come. And it looks like his Oncologist has some good credentials.
I look back at my diagnosis fully metastasized and remember being told 6 months to 1 year. But if I make it that long it could be 2 years. 2 years could mean 5 and then maybe some more.
I think that before any treatment is started the Docs don't even know yet if there will be a response to treatment or if treatments will be quickly burned thru in succession. So I feel their prognosis for me anyway made sense and luckily I've had almost 5 years now.
I do hope you guys get some peace of mind. I always relax a bit and feel a surge of optimism when the next treatment plan is in place.
For the first couple of years after my diagnosis anxiety spiked with every scan, blood test, new treatment plan, etc. I made myself sick with worry, and yet here I am, living a good life.
Campsoups' words are wisdom gained from his journey. If you haven't already, learn to meditate, resume old hobbies, pick up some tools from CBT, exercise, and since you are partners, cuddle, cuddle, cuddle.
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