I have not posted for a while, so a quick recap of husband's condition: Diagnosed in early 2014, Gleason 9, psa 13.5. After Tomotherapy radiation and three years of Lupron, Mike's psa climbed to 25 -- a sure sign that things were not working. April 2017: multiple bone mets to spine, left femur, right hip, and shoulder. By late 2017, he was in severe pain. An MRI last March revealed the seriousness of the mets to femur and hip and he was given spot radiation that did not seem to help much. He was also started on Zytiga last spring and continued with Lupron. In the last two-three months, things have only worsened and he was effectively booted from his job of 35 years because he's 'medically unable' to perform his (desk) job. After a recent appt. with the med onc, it was decided that he needs chemo. ( Please do not ask me 'why' he did not have this first, as I asked numerous times and was never given a sufficient answer; these last five years I have clearly been regarded as 'another Dr. Google' or the meddling spouse. Note: this is a so-called 'center of excellence.') Last three days: Mike has zero energy, eats next to nothing, and sleeps nearly round the clock. After phoning his oncologist's office, I was contacted (three hours later) and told that he needs to keep his appt. next Tuesday and tritely told 'we know it's rough' and to keep putting food in front of him. Useless. My question: HOW is he going to be 'well enough' to have chemo when he can barely put one foot in front of the other? Is it pointless anyway? Today, after suggestions from several other people, I contacted the local hospice care center and received the only truly caring response I've gotten in five years. Although he might not be ready for that right away, it's inevitable that he will be in their care eventually and a nurse will see him at our home tomorrow afternoon to evaluate his condition. He only very grudgingly agreed to this, still stubborn as hell, and not acknowledging even now, just how serious this is. Needless to say, this has been extremely stressful for me, our 22 year-old sons, and feeling that we are left to twist in the wind once again. Is it even *possible* to have the chemo (Taxotere) when in this condition? At the very least, shouldn't he be hospitalized? I feel that whatever I do, it's going to be the wrong decision, but we cannot go on like this day after day and neither can Mike.
Thanks in advance for answers/advice. Genny
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Waubesa94
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So sorry to hear about your struggles. Have you tried medical marijuana if it's available in your area? My personal experience is that it's great for appetite and making food more appealing. It's also been great for anxiety and mood, which might make it easier for him to get out of bed.
On a more traditional front, an antidepressant that affects norepinephrine (Wellbutrin, Effexor, Cymbalta) can be stimulating, improve energy levels, and might reduce pain a bit. Be aware that Effexor and Cymbalta also affect serotonin which can cause nausea and that won't help with the appetite. There are other things that can improve energy (ritalin, amphetamines) but I don't have any first hand experience with those. I do have a friend with MS who uses amphetamines to battle fatigue, and they work quite well for her.
The usual "I'm not a doctor" disclaimers apply. I'm just throwing out a few ideas of things that could conceivably help.
I agree about medical marijuana oil. Increases the appetite almost immediately. I definitely dont think he will be able to have chemo if he is not eating. * also not a doctor*.
if medical marijuana is not an option, CBD oil may be next best thing. i found it's good for anxiety, pain and gives a feeling of well-being. It helped me towards the end of the chemo treatment.
Sounds like chemo in what he needs..Should have had it years ago, but we all see great when looking back.. Best of luck getting him strong enough for treatment.
You could discuss the possibility that he is treated with Lu 177 PSMA. It has less side effects than chemo. There are several clinical trials in the USA,.
I am very saddened to read about the history of what you have gone through. As I say to my wife and others who have regrets over prior treatment decisions, you can never look back and blame your self or your doctors. It wastes your focus, time and energy.
What you can do, reassess where you are now. Find another well-respected teaching hospital and doctor (many have experience with doctors from around the country and the world on this forum - just ask about your general area) with a specialty in prostate cancer treatment and clinical research to provide you with a second opinion for your husband's options. I would suggest one with an integrated team approach that will address the health of his body, mind, and spirit. To address his quality of life through pain management, his fears through therapy, spiritual encouragement form clergy, meditation, prayer and any other source for making peace during his treatment and final stage of transition. We are whole sentient beings that need a holistic approach. There may be conventional treatments that can be supplemented with others. Also, second opinions can be done remotely and over a computer skype set up.
On a related but separate topic, you and your family need to spend some time away and perhaps seek out mental, emotional and spiritual support (perhaps) through one of the treatment team members, such as I described above. This may be able to address your own sadness, depression, fears, fatigue, anger and burnout. We, as the patients always want our families to continue on with their lives, however, unrealistic this may be. We feel like a burden to our caretakers.
This is really precious time that your family can spend together, in the moment. Being his advocate and comforting him showing him your love are the greatest gifts to can give. The more you and your family can come to grips with all you have been through and all that's ahead, the better will be your ability to cope and maintain your strength and energy - to allow you to spend the quality time for as long as possible.
A pause, several deep breathes and focusing on how to open up your options may give you more control over the situation. No matter the outcomes of each treatment, you need to be able to consider options and your MO should be providing them and listening to your ideas and questions (Googled or not). If he or she is dismissive, I would seek a new medical team who will listen. I have found that I am sometimes one up on my MO regarding the latest therapies and clinical trails but what counts is that she listens and discusses my options with my wife and me.
I suggest you and your family take one giant step back and take a new look at your situation and options. I hope you find a good way forward which will serve to improve everyone's health and lower your levels of anxiety.
Please continue to ask questions on this forum and let us know how you all are doing.
Dear Waubesa...I, too, want to say how sad I feel for you and your dear husband....I share your hurt, frustration, anxiety and fear....and I pray for you, as for myself and all on this site, that the Lord will grant us mercy and the grace of His light on our path and comfort of His loving care. I also want to say to you and to "dmt1121" that I feel that his reply to you is wonderful...I have copied and saved it to read and reread and to share with my family.
I think the response of dmt1121 is a Compassionate and valuable one. I also know what it feels like to be flapping in the wind and wonder why no one is listening...get a new medical oncologist!
I am so sorry to hear of the disease progression in your husband as it is rough for both the patient and caregivers. I would recommend finding a center of excellence close to you and have your husband evaluated ASAP.
You may want to try some high protein shakes to help him gain strength I know my wife has made these for me when I don’t feel like eating. Also someone mentioned marijuana that can also help increase his appetite.
To address depression is there and activity he enjoys that he can have or an outing to look forward to? I’m sure losing his position did not help but he needs to find things to look forward to. I know it’s hard when you feel like crap but even little wins can improve his mood.
On chemo if he can tolerate it starting sooner vs later to knock this disease back. It tends to hit the disease hard with minimal side effects. I know someone else also mentioned LU177 PSMA and if he can get in a trial it’s worth a shot. I was in your husbands condition last fall PSA 110 and doubling every three weeks. I started the LU177 in mid October and just received my 4th injection and my PSA is now 0.56 and scan show my bone metastasis is resolving. I know everyone’s results are different but knowing that relief is attainable should hopefully lift his spirits.
I hope his is able to find relief and gain his strength back to go through treatment. Prayers for you, your husband and sons.
I think the reply from "dmt1121" is right on target. Step back and evaluate where you are. Your husband may not be willing or able to go through chemo. or to start with a new MO. In my husband's case we kept trying one drug after another--lupron and prednisone, casodex, xtandi, zytiga--and none had any impact on his PSA doubling every few days, continued weight loss, etc. He passed away 3 months after discovering skeletal mets. In retrospect I wish we had realized sooner that the battle was lost, that God was calling him home. We could have spent more time talking, enjoying our memories and planning for my future alone, rather than trying one futile treatment after another. Let your faith be your guide.
❤️ dmt1121 couldn’t have said it better. I am so sorry you’re in this position. My heart and prayers go out to you. Love every moment and don’t worry about what was or wasn’t done. Focus on the now ...and remember to breathe...
Wishing you and your family strength from within and from us here as well.
I am so sorry for you. I have no solution. You seem to be thinking hospitalization or hospice so I think you need to act on those instincts. I would hope your doctor would agree that hospitalization may be needed. Maybe just being pumped up with fluids would help him. Helped with my wife 9 times over 2 years. Can they continue with treatments if it is hospice? Ask. Someone here is sure to know. People have been know to come back out of hospice. Don't beat yourself up. I tried that. Doesn't do a bit of good. Again, so sorry you are where you are at.
Since you are already talking to Hospice people sooner rather than later (which is so often a very good thing), your family might be interested in watching and discussing this PBS video, based on Atul Guwande's book, "Being Mortal".
Also, Tall Allen mentioned blood test results prior to starting chemo. This link contains the details of recommended limits before starting Docetaxel, and the options for either reducing or stopping treatments if blood labs go seriously out of limits, despite interventions.
My case and treatment are similar but remarkably no detectable Mets yet after 13 years. Gleason 9. Now age 59. After failing lupron, then IMRT, then lupron plus xtandi, then lupron plus zytiga, then cryo ablation, and finally chemo, I am now responding to lupron plus apalutamide (Erleada). Pot is legal in CA and helped immensely during chemo. God bless.
Many thanks to all who responded to my post and your kind words and thoughts. Sadly, our worst fears have been confirmed that Mike's recent downturn was more serious than any one could have imagined. Friday night he was having problems getting back into bed. I told our sons ' no more' and called 911 to have him taken to the hospital. After spending nearly four hours in the e/r and numerous tests he was admitted as a patient. One of our sons, Peter, stayed with him and I returned home with our other son Miles. Three hours of sleep later we got the news: there is a large mass in the front of Mike's brain and it is bleeding. With that devastating news, the final decision was made to have him transfered to our local hospice, Agrace. We were told that his death could be 'minutes to days' or even instantaneous. As of this moment he is having trouble breathing and I pray that his passing is today. No one should have to go through this agony.
So sorry. Your instincts were right on and it sounds like his MO should have been much more on top of his condition and conducted thorough diagnostic testing. Had he done so, it is likely the tumor would have been caught much sooner. Though this would have made your planning and acceptance of his diagnosis easier with more time, the outcome would have been the same. It is very unlikely that anything could have been done to treat it beyond palliative care and hospice.
I am most saddened by what you and your family have gone through and you continue to go through. It sounds like his passing will be a blessing for everyone. Please remember that there is no blame for anyone of you about how things turned out. You followed the advice of a medical professional while under great emotional pain and stress of all kinds.
I’m sorry I wish I can tell u what to do I hear the frustration in your email. I will pray for u. I know how it feels to feel helpless and no one including these doctors and their staff really care.
You, Mike, and your sons are in my thoughts and prayers. I don’t know what to say that hasn’t already been written. It makes me think of all the men (and women supporters) on this site and the fragility of our lives with this disease. Some are at different points of the spectrum with their stories. Yours will help us all keep vigilant with our medical teams and treatment. Thank you for sharing and God be with you.
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