I'll head over to the Caregiver site directly, but I count on you warriors for SO much information. I always start here. I updated Joe's history here but would really appreciate any thoughts you survivors can share about where we are now, realizing no one really knows........
My Joe has not bounced back after ending chemo in December. Two weeks ago, while doing yard work, he took 3 falls. Suspected broken rib test was negative and corollary chest x-ray showed nothing. He still has nausea, swelling (mostly ankles and legs), shortness of breath, and real fatigue. He doesn't seem to be able to stay awake more than a very short time (2-4 hours) and then will sleep an equal amount.
Worst of all is his psyche. Today he said quietly that he's having more bad days than good: that he's tired: he just feels sick.......that he doesn't want to fight anymore.
I'm hopeful it's 'just a mood,' and does not portend our immediate future.
I do all I know to do, and I ask him always what he'd like me to do. The last few days have been hard because little seems to help.
Have any of you been where my Joe is? If so, what helped you? I want to not be thinking I'm looking at the end of us, so could use your help. Please and thank you.
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Cateydid
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First of all his profile says metasticised to his “chest”. What the heck does that mean? Are the tumors in his bones or soft tissue? Also when was his dx and what treatments has he received to date?
just realized there was more to your question….I thought I had logged his history since 2009, including the prostatechtomy, radiation, chemo, lupron, etc….
Contact your team of doctors , your pcp or oncologist and get the referral to the specialist on Joe’s team that can deal with his mental side effects. There will be a great group - department that deals with this every day. Not just prostrate cancer but people with breast. brain , organ you name it. There are many great new drugs to help with the depression , they’ll know what to do.
Two very small thoughts 1) make sure he didn't hit his head during those falls and 2) remember that when the body is already fighting so much (cancer, chemo), those falls are a lot harder on the body than they would be for a healthy person. It gives the body even more healing work to do (addressing swelling, bruising, etc). The "speed bump" of feeling even worse can take quite a mental toll. I don't have good recommendations for *how* to address any of this, but maybe the thought process can be of some use to you?
Sending prayers for you and your husband...HUGS!!!
Maybe he has had enough. Totally understand how he feels. Life is tough. Especially when we feel ill. You sound like a great caregiver but part of this role might be to support him in his decisions.
I printed off end of life forms for him, got copies to the doc and on our fridge. We have talked often about wanting quality over quantity. When he says he’s done, I’ll hold him and walk with him to the finish line….then I’ll kiss him softly and promise to meet him on the other side.🥰
Your pain and grieving are heavy. I am sorry. When my partner was deeply ill in December and January it was like his light was dimming a little each day. Because looking at the future/at the what-ifs was so painful and sad I tried hard to focus on the now. It helped me to realuzr all I could control was the now.
do you have a palliative care specialist on your care team? If not, I’d highly recommend adding one! We so wish we had added one earlier. When were his last scans and what did they show? I see you have a PSMA scheduled, so that’s great. Has he had any genomic testing done on any recent Mets since PC can continue to mutate?
My hubby had scans every 3 months and his PSA was always low (he had both adenocarcinoma and neuroendocrine/small cell PC). And he always had scans after 3 chemo infusions to make sure it was working. PSA is but one data point and a notoriously unreliable one at that.
What about a palliative care specialist? They focus on treating the symptoms and side effects of the disease and its treatment. It is not the same as hospice and can be done in conjunction with active treatment. They really focus on QoL.
Coincidentally, I had a conversation with my wife just this morning on this topic of what I I'd "like her to do." Also, coincidentally, I recently said the very thing that your Joe did: I don't want to fight anymore.
While this was honest, my actual truth is a complicated environment that seems to shift like sand every single day. Yes, there is a permanent part of me, 24/7/365, that just wants an end to the emotional agony of existence. Fortunately, this part doesn't dominate every day and, on great days, seems a very distant and small thing indeed.
It is very telling that, even after 6 years, 7 months, and 14 days post diagnosis, my wife still desperately wants to understand even as I desperately try to find a way to help her understand. In a very real sense, it is the most important day-to-day struggle I face, i.e., to help my life partner feel that she and the "us" we created is still important to me.
The foundation of this struggle is not just my cancer and my physical discomfort, which are large burdens in and of themselves. No - It is the unavoidable ADT treatment.
It is impossible to vocalize what ADT really does; the list of vague, clinical "symptoms" doesn't accurately paint the picture of the often wholesale disconnect of feeling from memory. Brain "fog"? What a benign, offhanded, and childish description! Imagine knowing you experienced something, even the moment-to-moment details of it, but not being able to associate a real feeling with it.
Even writing that truth is painful for me. In many ways, my former life is always beyond my reach and I cannot hold it. I can only brush it with my fingertips. But I try not to dwell on that too much. As King Lear said: "O, that way madness lies; let me shun that; No more of that...”
What Joe is going through isn't just a mood, it is a permanent mental loss that he is struggling to cope with even as he goes through the physical motions of cancer treatment. It is akin to PTSD, but rather than being triggered by an event, it is a condition brought on by ADT.
There is no cure, but there are coping mechanisms, therapies, and distractions that help make life very worthwhile. But, first, it will require Joe to share in a extremely visceral manner what he is feeling, and even I find that difficult even though I am deliberate about it.
Like living with PTSD, this is a painful emotional journey that never really ends. But, very much unlike PTSD, my dreams are not nightmares. Sometimes...yah, just sometimes... in my sleep, my memories and my feelings are once again reunited.
Okay. Moving off the emotional part of this response, let's address the "swelling (mostly ankles and legs), shortness of breath, and real fatigue." This sounds very familiar to me, but it's not cancer or its treatments, it's cardiac related. This is something you should look at ASAP! And it'll give old Joe something to concentrate on, I know it did for this old Joe!
Dear, dear Joe!!! Your reply has touched my heart. What a beautifully written response.Thank you for the reminder that what Joe has lived with since 2009 is a traumatic condition. We’ve known for years that his…and our….life would never be the same after his surgery and radiation. I’ve come to terms with it, but every now and again he says something that lets me know it still bothers him. Like, “you didn’t sign up for this…” But I did! We were married about 5 years post diagnosis and the start of treatment. I continue to research studies; ask questions; challenge the doc. And yet I don’t know all..or most..of the answers. I just want to support him through the decisions he makes, and the ones he can’t.
After his last fall he had a chest X-ray to rule out a broken rib. Report shows no break, no heart issues, no lung issues……
Looking forward to the PSMA scan on the 27th to see if it uncovers hidden issues…..
Well, you are doing great. Us Joes tend to be silent sufferers and feel guilt... I wish THAT particular emotion had gone away...
The former medic in me is going to press on the cardiac topic. It can't hurt to see a specialist.
While general reports show no heart issues with me, just last month I dragged myself to a cardiologist to get fit tested. Turns out that, while the plumbing is okay, my heart's electrical system is wonky to the point of being only being 77% efficient. ...Who do I see about a refund on this body?
My regards to Joe, and keep on keeping on, Cateydid!
I’ve told Hoes doc multiple times about what I learn from this site. I’m going to call my own cardio and schedule an appointment for my love. Thank you again!
Cateydid , you deserve recognition for being on here advocating so strongly for Joe. You are his wonderful caregiver, especially now, when he needs you the most. I’m sending out a big warm fuzzy EHug to you … and , of course, one for Joe. Hoping everything settles down there pretty soon.
Kaliber, thank you. As scary and intimidating as it felt to write, I’m so happy I did. I really feel encouraged and empowered AND I’ve gotten some great practical advice.
It sounds like you are on top of things and I am just pondering Joe's situation in light of my own. I am in fairly good shape and not having any major issues yet but I still relate every new ache or pain to cancer. Is it possible this is not caused by the cancer and is a side effect of the Nubega or something else entirely? I know 1/2 doses of Xtandi revived some forum members from zombidom so maybe thats an option here? I would ask his Dr if you feel at all that might help, especiallyif he is on Lupron and Nubega.
thank you for writing. He’s only had one dose of Nubeqa, and his last Lupron was nearly 6 months ago, so he’s getting a shot when we go to hear the results of the PSMA scan at the end of the month.
I will surely ask about Xtandi. Thanks again.
I’ve also taken some of y’all’s suggestions about getting other opinions and checked with insurance to confirm there’s no limit to how many onc’s we see for a plan. His onc here at home has been clear that, in our small town, there’s just not much left to do for him, so I’m looking to connect with Sloan-Kettering, I’d Cleveland, or Mayo, or…….who knows where?!?!
Sorry if I wasn't clear but if he has only had one dose of Nubega I assumed it was oral pills daily like Xtandi, I doubt there would be a reason to change though if your recent concerns of the physical issues of falling and such started at the same time I would wonder if it played a roll. I know starting Xtandi, I have been on it for 3 weeks, for me has had a mental dynamic that I am still dealing with and hoping my body and mind will adjust.
Thanks I will keep those in mind. If I can keep getting out on my bike I will be doing well until I can't. All that natural serotonin and dopamine. I forget sometimes but yesterday's ride really reminded me. I just wish the weather would cooperate.
no kidding and boy howdy did it ever. The skies opened up and the hammer fell. The extinct Tulare lake ( biggest lake west of the Mississippi at one time ) has arisen and made a reappearance. All those lake bed farmers, labor camps and towns need a snorkel and fins now yayahahahaya yayahahahaya.
However …. That’s not the actual weather caused big disaster … because it’s yet to come …. but come it will. Quite literally 3X + normal annual normal snowpack is deposited up on the Sierras right now. It’s got nowhere to go but down here. The irrigation reservoirs can only hold 1X and most of those are at 40% or better right now. That leaves 260% more water they have no clue what to do with. There is just more snowmelt than they can handle. If we have a cooler than normal spring , they might be OK ..but if we hit our usual 100F + days, all hell might break loose.
I have read about that. Its gonna be a nail biter for the next few months. We had a similar issue here last fall with a dried lake turned housing development flooding and atmospheric rivers. Wettest fall/winter in last 23 years that I have been here. You better get that dingy ready just in case. Has that beautiful spring started there yet? Still unseasonably cool and wet here.
spring, here , starts the 2nd week of February below are a couple pics from Feb 9th. The temps have hit 89f once already, but are mostly in the 70s to low 80s for now. The low 80s seem a bit warm this soon.
We aren’t in the flood plain of Millerton lake if it goes over the dam. I’ve seen it happen once in the last 45years, but this time could be much worse. The Kings river, one of many large seasonal rivers locally, …… is running wild already , a whopping lot of water flowing. All the local lake operators are trying to let out as much storage water as possible , but 2X more than the lakes can handle is waiting to wreak havoc.
I share the same following effects of my Pca with your dear Husband Joseph ..... but I'm 86 and have been fighting Pca for 20 years.... "Swelling (mostly ankles and legs), shortness of breath, and real fatigue and losing my balance and falling". He definitely needs the help of a good Medical Oncologist in a good Medical Institution. God Bless him and God Bless you....
j-o-h-n <===<<< Senior management is about to spike my spikes....
Hi Catey, Thank you for being such a strong and loving advocate for your Joe.
I only know the anxiety of being the one with terminal cancer, and I can only guess at the worries and cares of our partners. I hope you are using some of your love and energy to take care of you as well.
I've been on Lupron/Eligard for almost 30 months now (implants every 4 months), and following my last implant I felt like I was losing my mind. Everyday was a struggle, and I had to work to find the will to continue. Even though the Lueprolide has beat back my cancer, if I thought that I would feel the same way for the rest of my life, I think I would have decided to be done with the treatment.
I posted about my struggles on this site. As usual, I got a lot of great input from this wonderful group. Consequently, when my next implant is due my MO is going to switch me to Degarelix. If that doesn't change how I am feeling I will begin to press him to switch me to Orgovyx. Simultaneously, I am lobbying him to add estrogen patches to my treatment.
My point is, these meds change the way our brains function, impacting thinking, recall, motivation, mood, irritability, etc. It might be time to talk with Joe's team about options.
Finally, my wife's health and happiness remain extremely important to me, even as I struggle with this cancer. I do not want my health challenges to destroy her well-being. Whatever you and Joe decide to do about his treatment, PLEASE remember that you have to take care of yourself as well. Maybe tomorrow is the day to break out the candles, bath bombs and comforting music for a spa day.
I’m with a lot of the suggestions here. What Kal and others suggested as far as getting a medical team involved and concentrating first on his mental outlook? Determine how to make him just plain feel better?
As a side note of my personal experience and some documented experiences keep in mind that for every single infusion of chemo it can take 2 months or longer to recover from (6 infusions= a year to recover ). Also I began and stopped chemo therapy this past fall/winter for the second time in this journey (first time was in 2020). I only had 3 chemo infusions and it seems I was hit very, very hard by it this time ( cant be sure because cancer itself can be a factor too is involved ). I started Xtandi about a month after the last infusion and it is possibly confounding everything along with a somewhat high PSA and bone mets that are simmering with mild pain.
It's really great and I know that sounds trite but it is great all that you are doing for him as I see by reading thru this post.
I just wasn’t to respond and offer support. Your Joe is so lucky to have you. I know first hand how hard it is to be in your shoes. The caregiver support group isn’t nearly as active as I would like. You did right coming here.
Many great suggestions have been offered and I hope you could share them with Joe. My Brian was on medications to cope with depression as well as intermittent anxiety. He also spoke monthly with a therapist that dealt primarily with people living with terminal illness. I think this was probably the most helpful thing he did for himself, and it actually quite helped him live better with the realities of the disease.
Getting adequate nutrition, exercise and sunlight all helped. Practicing mindfulness even on the simplest of tasks allowed him to enjoy the present as much as possible.
Best wishes to you and your Joe in this journey. It can be rough, but it can also be really beautiful. Such is life, I suppose.
I can relate to your feelings, as I too am the wife of an advance Pca patient. My heart hurts for both of you, but I really do think there is hope. The suggestions given in previous responses are things to speak to the doctors about. I’ve found that often times we really have to push our concerns with the team, and sometimes even add new team members.
Palliative care sounds scary but it can be super helpful. It focuses on quality of life. It is NOT hospice care, but rather patient centered care to address pain, discomfort, and fatigue. They will often work with your current doctors if care plans need to be adjusted. As with every specialty, you just need to find the right person that you feel comfortable working with.
You are clearly a wonderful support person for your husband. Remember to take care of yourself as well!
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