My guy appears to have reached the point where his body is no longer reacting to treatments. We knew this would come, and you think you can prepare yourself, but it sure doesn’t go as you’d hoped. His MO stopped his chemo as he was only taking 1-2-1-2 (Xtandi - alternating days) when the full dose is 4 tablets a day. He no longer wishes to do full dose chemo if any sort. He is taking a hormone injection monthly but it appears to have stopped working as well. His PSA has increased significantly over the past several months with the latest jump being from 31 to 56. The spread of this cancer is happening so fast. At least it feels like it. It’s now throughout his bones with Mets here and there and his pain is getting worse. He also has significant uptake in both kidneys, with one having what they say might be a blockage, and then uptake in his bladder with a decent size spot.
I was hoping someone who has experienced, or is experiencing, this kind of scenario might have some encouraging words or recommendations for him. They told him, in May, he was probably looking at a year, possibly two years. He is very discouraged, understandably so. He was diagnosed 5 years ago and was told average of 5 years at that time. I just want to do everything I can to help him with everything but I’m feeling a bit lost.
Thanks so much ~ deb
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drb1966
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You may want to focus on palliative treatments. Continue ADT, of course. Discuss ureteral stents to allow kidney flow. Discuss mitoxantrone. Opiates for the pain.
That’s pretty much where we are, I believe. He is on a lot of medications to help keep him comfortable. He has an urology appointment and his MO talked about possibly needing uretersl stents. I’ve not heard of mitoxantrone and will look it up, thank you. Thanks again…
I can’t help with the medical advice side , but I’m sending out a warm ehug for both of you, and thinking positive thoughts putting you on my transfer of merit board as well. None of us know , ahead of time, when we will expire …many ( including myself ) last much longer than the pcp’s expect. Clearly your guy is a strong fighter and he has you at his side advocating for him. That’s a great combination.
Thank you for your response. You’re so right, we just don’t know. I could pass before him… and I remind him of that. Things are rough in my family right now… my 81 year old dad is having health issues, my aunt (like my sis) is fighting stage 4 colon cancer, my (adult) son is having neck surgery, my oldest granddaughter started having seizures … and my BP has shot through the roof (high of 220/122). Thank you for the encouragement, I sure appreciate it.
You've got more than a full plate of issues. Make sure to take care of yourself as much as you can.As for chemo"s debilitating side effects, consider looking in to Cabazetaxel/Carboplatin combo, which is much more tolerable than Docetaxel.
I've been struggling with mental SE's caused by Lupron and Eligard. Since I had to ride out the 4-month dosage before my meds could be changed, I needed some help. A friend recommended CBT (cognitive behavioral therapy) techniques to help me deal with the unhealthy emotions and thoughts I was experiencing. There are some good resources online to check out as a starting point. Unfortunately, I can't offer any medical treatment ideas, but taking care of my mind has allowed me to maintain the majority of my quality of life during this difficult time.
Thank you for sharing what has helped you… I’ll do some researching to find some CBT resources. This is something we’ve not thought about. Actually, I’ve never heard of it. I appreciate this info and it’s encouraging to hear it helped you. Best wishes to you as well …
My advice for both of you is to talk honestly if you can about how you're feeling. It doesn't "spare" anyone to hide those feelings of sadness, anger, panic, fear. My husband and I waited too long to talk. Also, don't be afraid of hospice. Too many people are it as giving up and it's really not that at all! They will guide you and help you with equipment, pain meds, respite care -- so many things that are really difficult to do alone.
I don't want to presume to answer questions you haven't asked but my husband died two years ago, so if I can be a resource, please ask.
I am so sorry. I know it's terrifying. I hope he has time to reflect and reconcile himself as best he can.
Thanks so much for your response and help. I’m sorry you lost your husband… I hate this disease. I can say that we do talk openly, thankfully. We’ve spoke with hospice and learned a lot. There are many misconceptions about their service and it was nice to actually speak with them to learn of what they’re all about. We have our wills in place, living will, power of attorney… etc. Thank you for sharing what you learned by your personal experiences… it truly helps in many, many, ways.
Hi, Deb - my husband Eric and I are only 7 months into our journey, but I am well aware that I will be where you are some day. I try not to dwell on that, but it is always there. Please know that all of us here are thinking about you and your husband and sending strength and peace. And please keep writing, if you can. - Suse
My husband's story as well. Done with treatments, PSA doubling, "discomfort" increasing (he won't say pain) and loss of joie de vie. Dx was in 2014 so Lupron/Xtandi bought additional time, albeit with many SEs. We knew this was not only possible but probable and have gotten through this horrible roller coaster ride for years. We also know the ride's end is on the horizon and are trying to be prepared but, of course, won't know how much until it's right in our face. I know I'm going to have to reach out to others, something that doesn't come easily to me, but I'll see him through to the end with every fiber of my being! Wishing you and your husband all the best!
I have an aggressive variant and will likely be where your husband is in the coming year. I'm working with an end of life doula to get my affairs in order and a therapist to get my mind in order.
My wife also has a therapist, so we talk to each other about our sessions. It helps us deal with the difficult stuff.
One thing I've started to investigate is use of psychedelics for end of life patients. Apparently, many people find peace after a properly guided "trip". Right now I'm reading "How to Change Your Mind", but i will also seek out opposing views before taking action. Also, it's not legal where I live, so that's a consideration.
Keep talking, loving, and spending time with your husband. Having a short timeline makes you appreciate everything so much more. Take care of yourself too.
I don’t have advice but I want to send you lots of hugs! I’m so sorry for your situation, and I want to thank you for the help you have provided me just recently
With all you are dealing with, it is no wonder that your BP has shot upward, but you need to stay on top of that and take care of yourself, in order to help others. Perhaps you can also ask your doctor for an anti-anxiety medication to help you (e.g. xanax).
My heart goes out to you both. I'm 2 1/2 years in, and will probably have a similar fate and timeline. You might want to look ahead and do some research on palliative care to see what might be available to you in the near future as you battle this insidious disease.
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