This has come up on us really quickly. My husband entered the FOR46 trial last month and did one round of chemo. He's been trying to recover ever since. His PSA is back up to 300; AP is around 600. LDH is off the charts. Potassium, calcium and phosphorus have all been critically low at times and I can't keep them up with supplements.
My husband just turned 62. The doctor told him at the last appointment that he's not in good enough shape for more chemo. The arm lymphedema has made his right arm unusable. His hand is limp and dusky and I have to clean the fingers and exercise them to prevent them from necrotizing. The last scan showed it was through the lymph nodes on that side like a bunch of grapes.
He is absolutely unreconciled to dying. I keep bringing up hospice and he looks at me as though I slapped him. Am I crazy? Do people dig out of this big a hole? Could he recover enough for chemo? I don't want to always be the Debbie Downer, but I need the help hospice can provide.
There are just not enough ways to say how much I hate this journey. We have not caught one break. (Other than the bone kind.)
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CantChoose
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What is the specific reason why he is not fit for chemo? I would want to know that. There is a focus on the side effects of chemo, but it can kill the cancer and make your numbers go the right way again. There are two chemotherapies for prostate cancer: Docetaxel and second-line Cabazitaxel.
He could have a biospy and have genetic sequencing if he hasn't already. He may have a treatable mutation with PARP inhibitors.
Has he had abiraterone and enzalutamide? They are rapidly becoming first line defences with ADT. If he has already gone this route and failed, it is worthwhile rechallenging.
I think a good oncologist could come up with a number of treatment paths. Especially with genetic sequencing as gregg57 said.
We're seeing Hussein, so we have the best in the world. I'm not sure which value is disqualifying him specifically for chemo. His hemaglobin is back under 10. Phosphorus is <1.0.
He's taken Zytiga and it did nothing. She didn't think other similar meds were worth trying. Suggested moving on to Jevtana if he can do it, but right now just getting to the hospital is very difficult. He's not been eating much for about 3 weeks and can't get out of bed most days.
Oh, and we had biopsies done when he had his arm surgery. No useful mutations in the cell lines. They were concerned he had developed multiple myeloma based on how the cancer was acting, but it's just regular, nasty PC.
That really sucks. I was going to suggest genetic testing and hope that points the way to an immunotherapy that's more tolerable than cytotoxic chemo.
Definitely get hospice or palliative care involved. It doesn't necessarily mean you're throwing in the towel. Focus on getting the pain under control and getting his appetite back. That could make travel to appointments easier, which means the ability to get second and third opinions and maybe find a trial that your current oncologist doesn't know about.
And most importantly, don't neglect yourself. Set some time aside for you and things you enjoy doing. That's a suggestion from my wife, not me.
FWIW, I've accepted that I'm about two or three failed treatments away from the end, and with neuroendocrine we're talking experimental or off label treatments. Counterintuitively, it helps me deal with treatment, because it reduces my fear of failure.
“I think we've come a long way. When I was training, the expected median survival time for patients with metastatic, castration‐resistant prostate cancer was 9 months, whereas now it's about 2.5 years.”
Well it does appear that your Husband is in good hands...God Bless!
Yikes CantChoose , I’m sending all my best good thoughts for you and your husband ( transfer of merit ). I hope both of you get some relief soon. A virtual hug for both of you.
If/when the doctor and your husband and his body/numbers/symptoms may get on the same page for some next treatment option is one thing. YOUR increasing difficulties with providing caregiving in the home setting are also important. Tell the doctor and the social worker staff about your needs and increasingly taxed caregiving capacities. Ask about the availabilities of lymphedema specialists or visiting nurses to tend to his endangered arm and other matters. Ask them about mobility and transportation alternatives if that is a growing problem. Ask about Respite care options for you. Maybe do some preliminary inquiries about future Palliative Care vs. Hospice Care options, to clarify where you both stand on those options, and when to use them.
If you may not have ever seen it, this PBS Documentary "Being Mortal - Medicine and What Matters in the End" might be a useful conversation starter.
Most clinical trials have limits for the liver enzymes, and it sounds like he's exceeded them. There are also limits for the bloodwork, liver and kidney for chemo and PARP inhibitors. It sounds like he's reached a point where anything he tries will just kill him faster. It must be exhausting for you. I remember how my mother took care of my father long past the point she should have. She wound up being institutionalized. You are useless to him if you are exhausted. I hope you are able to convince him to accept the kind of help he needs at this point. My heart goes out to you.
Sorry to hear about your husband's turn for the worse. It's been said many times that the spouse/caregiver suffers more than the patient. The link below is to the hospice care provider, Vitas, that offers services in many states. My wife posted recently about our experience with them when her 90 year old father passed away this past February:
Post 8/11
“I was the health care surrogate for my father and my husband and I were with my dad when we had the first visit from hospice. The RN who came to see him did a great job explaining what they do and the services offered. He was reluctant at first to accept their care but after a few weeks and a lot of health issues he told me to call them. I cannot say enough about how great they were. Now having had first hand experience with hospice, my husband and I wouldn’t hesitate when/if the time comes for my husband. Hospice will make sure your husband is comfortable and in no pain. They will also provide anything you need at home (bed, wheelchair, oxygen, etc.) in addition to providing all medications. Their aim is to keep the patient at home and if they have to go to an inpatient hospice facility they will try to get the patient stable enough to return home. I could go on and on about the wonderful care they gave him so if you want more information feel free to contact me directly.”
I realize your husband has shown reluctance to hospice, but the in-home services that they can provide for up to a year before actually being placed in a facility is invaluable. My wife’s father was not wealthy and everything was covered by Medicare. Hope this helps. If you don’t have a Vitas facility near you, you may want to look for an alternative in your area. Good luck and God's speed for better days for you and your husband. 💪💪🌈🌈
Chemo is rough even when you are feeling your best. So yeah I can understand the oncologist saying that chemo should not be given. At this stage it would not add too much time I would think anyhow. People fear death all along the spectrum. Some not at all while others it is the worst thing imaginable. Personally I think hospice is wonderful when appropriate. Not sure from your post if he is at a stage in his cancer where the disease itself will actually end life. These usually include blood transfusion dependency or catabolic state where the cancer hogs all the calories ingested. Although not that effective for PC has he had immunotherapy or looked for receptors or genetic mutations that are favorable to the newer agents out there? Might be something to consider. Thoughts out to you and your warrior...
So sorry you are in this terrible place. Perhaps Hussein will suggest Hospice if she thinks that is where you are at. Maybe she has already suggested it. I hope you can find some time for yourself.
I really feel for you. Comfort not cure is needed, for both of you. Easy to say I know but it is the same for many of us as we keep the beast at bay. Just give all that you can to each other...
Heartbreaking words indeed. Depending on ones beliefs ? There is always someplace to go . This suffering ain’t it for him. He’s one tuff cookie.. though .. I’m 60 pretty close in age .. I say put your faith in the forefront now. Stay strong yourself. He needs you so . I’m very sorry the dr said this .. Pray for miracles.. Your love will carry him wherever he needs to go.. Most every wife or partner here will face the same ... hang in there , get help, hospice can help . Don’t hold the world on your shoulders. At some point mercy is due.. God Bless🙏
Dear CantChoose,
Please don't give up hope.
Perhaps you might look into complementary supplements that might help, even if there's no scientific evidence showing them to be effective.
If you click on my avatar you’ll be able to read my bio and some posts I started about complementary treatments.
I’ve been taking Essiac, which is an old herbal remedy that's been around for almost a hundred years.
I'm the first to admit that there's no scientific evidence showing Essiac to be effective, but I've been taking it together with CBD oil for well over 3 years and am happy with my results so far.
I'm replying under Alvin (my husband's on line name, as he no longer posts or reads HW). I understand completely ... have you tried to see if any of your hospice facilities offer Pallative Care? That is what we have for my husband, they have kept his pain to a minimum and have a NP come visit the house weekly or every other week. Alvin also doesn't want to talk about going on Hospice, but he's ok with Palliative Care. I think Alvin will be transitioning to hospice care fairly soon as he can no longer walk, too weak to do anymore "cancer" type drugs. He is basically paralyzed on his right side, sleeps all day, rarely talks now, not interested in doing anything other than sitting and watching tv. His pressure sores on his bottom are getting worse, won't change positions and is being fed through a G-Tube. He is able to eat, but says food tastes horrible and would rather just do the tube feeding. Life sure has changed since a year ago :-(. Good luck ... we all need it.
I have been a Hospice Nurse. Hospice is not always for those dying quickly, but for some chronic conditions where the likelihood of dying exists: COPD(end stage) Cardiac issues that can not longer be treated except medically. Either Home Health or Hospice will help give you some peace of mind and respite from his care 24/7.
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When do I go from here?
doc says 9-12 months more for my dad
After years of doctors, trials, tests, meds etc. it is time to rest and flow with the current
MRI found 2 cm lesion on pelvis, doctor said to ignore it.
