Hi everyone. Unfortunately, our world has been turned upside down. My father has recurrent prostate cancer that seemed to be well controlled with ADT, but in fact had mutated into Small Cell Carcinoma of the Prostate. He has gotten so sick, so quickly, and we're not sure exactky why. We are concerned he will not get strong enough to start treatment, and it feels like we could lose him any day. I'm hoping someone has some insights that may help us get him stronger.
Here is a timeline of events:
2015: Diagnosed with PC, undergoes radiation, and goes into remission.
2018: Cancer returns and is in local lymph nodes. He starts ADT.
4 Weeks Ago: My father is an otherwise healthy 72 yo man. He is active with no other preexisting conditions, except for slightly elevated BP. He looks younger than his age. A checkup on his PCa reveals the cancer retreating from his lymph nodes. His PSA and T are low, and liver values normal. At this time he notices back pain after working around the house.
2 Weeks Ago: The pain grows progressively worse. He loses his appetite. He is not very mobile, and has trouble breathing normally due to the pain. He goes to see a back specialist who suspects spasms, but also sees something on his liver, and refers the imaging results to his oncology team.
Monday of Last Week: his oxygen levels drop, and his doctor recommends he go to the ER. His oncologist gets around to reviewing the imaging and schedules a biopsy. He has pneumonia from shallow breathing, and starts an IV antibiotic. He is very much weakened, and appears to have aged 10 years overnight.
Thursday of Last Week: he seems a bit better. He is able to walk around the ward four times with some help, but his voice remains weak. Further imaging revealed a 1.2cm mass by his uterer, blocking his kidney, for which he will get a stent. This is the likely source of the pain. He has multiple small lesions in a "not so important" part of the liver, which were not detected earlier as they are not affecting his blood work. Lastly, he appears to also have cancer in a lymph node behind his kidney. So, he has metastatic cancer, but they are small masses which I would not assume to be the primary cause of his continued rapid deterioration (see below).
Saturday of Last Week: he gets a stent put in, and seems reasonably OK, though not much better than when he got in.
Sunday: he goes home, against doctors' recommendations, and immediately seems weaker, and more fatigued.
Monday: he nearly dies. He falls, at 4 AM, doesn't attempt to get to his feet, and becomes unresponsive. He's rushed to the ER again. His BP drops dangerously low. Septic shock is suspected. Later that day the Biopsy results come back as Small Cell Carcinoma. We are told his PC mutated, but it does usually respond to 1st line treatnents, albeit breifly, and then there are a few options. He just needs to get strong enough for chemo.
Tuesday: some bacteria and white blood cells are found in his urine (along with enough blood to make the bag on his catheter appear an orange-purple color) and a UTI is suspected. He seems much worse than when he was discharged the previous Sunday. He can no longer get in and out of bed on his own, much less walk around the ward. His speech is slightly slurred and hard to hear. His face is somewhat drooped.
Wednesday: They image him for blood clots in the lungs as his breathing is still labored, but find none. However, fluid is found in both lungs., and he starts a duuretic. His heart is being monitored. His blood cultures cone back negative, so no sepsis. Rightly or not, this news is actually disappointing, because no one seems to know what is making him so sick. Urine cultures should be back tomorrow. Even moving him to get him more comfortable in bed causes him to wince and groan, but if you ask him what hurts he says one shoulder does. It seems like everything does.. He is somehow getting evaluated for physical therapy tomorrow. I can't tell if he is slightly worse again, as he was given opiates for pain throughout his trunk earlier in the day. I suppose the fact that he was conscious despite that was a good sign. Maybe he's bottomed out. Somehow, he is in good spirits, or at least putting on a good show for us.
That brings us to now. I'm really becoming concerned that he will not improve at all, and not even make it out of the hospital, not to mention becoming well enough to start chemo. I can't imagine all this persistent change is completely due to the cancer spreading, because so little time has gone by, and the issue with the urerer/kidney that was the impetus for all this was functionally resolved.
Most of the details I know about his medical status are second hand, but the plan is to have me more involved going forward. Having said that, the staff keeps looking, so they don't seem convinced cancer is the primary cause at this moment eirher.
I know many people in my shoes think this, but I worry he's getting written off because of his age and disease progression when he wants to live, and has so much and so many to live for.
Any suggestions into what we can do to make him get stronger and eat would be appreciated.
I ordered some CBD oil thru Amazon which, if the doc says it's OK, I'm hoping will help with the pain. I also got some THC gummies, as one of his docs had referred him to a medicinal marijuana dispensary, but he never got well enough for my mom to take him. He seemed to eat a bit better today, but between his current caloric intake, the hormone theraoy, and the amount he has deteriorated, he looks like he has a ways to go before he can even walk again, assuming that is even a possibility. Meanwhike, time is not at all on our side.
Thanks for reading.
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FuriousGeorge
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"Monday: He falls, at 4 AM, doesn't attempt to get to his feet, and becomes unresponsive. He's rushed to the ER again. "
"Tuesday: He can no longer get in and out of bed on his own. His speech is slightly slurred and hard to hear. His face is somewhat drooped."
I'm no expert, but it sounds like you are describing a stroke. You mentioned nothing about a stroke either being suspected or ruled out. Did he get a stroke workup at the ER?
This is something that I will definitely inquire about, however what was in my mind was an article I read about signs of actively dieing. His drooping doesn't look like a stroke. It's bilateral, as is his weakness.
FG, This sudden fall in his performance status does not seem due to PCa, He has some acute process going on and my guess is that he might have infection probably UTI with electrolyte disturbances ...that is causing these abrupt onset symptoms.
Will be interested to see what urine culture shows. Also his urinalysis and CBC needs to be repeated to carefully screen for UTI , People with PCa are vulnerable to infections and if treated quickly and properly, they recover beautifully. Keep us posted. Best wishes.
The palliative care doctor told me that nothing showed up in the urine cultures yet, but said he was on a strong antibiotic, so that was not a concern tomorrow. He also mentioned that taking a culture does not always find the bacteria.
The same doctor implied that the cause could just be the cancer. I found out he also has a bone metastasis today, and more lymph nodes are affected than I knew.
Even if is just academic at this point, and despite what I just said about additional metastasis, I want to ask his oncologist why he did not continue to improve after the stent. Not that I think that the stent caused it, but perhaps he can receive palliative radiation to whatever has grown in the last 2-3 weeks, just to get him back close to where he was, if the cause is the cancer.
You are right that there was at least one other thing going on. They took 600 ml of fluid out of his lung, and he's breathing better than he has in at least two weeks. I'm a but annoyed because I and our Urologist cousin now think there was never pneumonia, and it was always edema, which could have been resolved shortly after the first intake.
We're taking him home, according to his wishes, getting him a nurse, and crossing our fingers that we can build on this, and get him strong enough for treatment.
No one's ruled it out to me, and even if they had, I'd probably have to keep hoping anyway.
"He can no longer get in and out of bed on his own, much less walk around the ward. His speech is slightly slurred and hard to hear. His face is somewhat drooped."
Classic stroke symptoms. I think there's more than PCa going on here.
As for the neuroendocrine PCa, hopefully he can get platinum chemotharepy for that when he gets better.
I agree he could have a stroke and he needs an imaging study to confirm this clinical impression . I believe the window of opportunity to treat a stroke with drugs or endovascular procedures has already pass. Discuss about stroke with his doctors.
I'm so sorry to hear about his rapid deterioration. This is what happens with cancer - body systems break down. When someone dies of cancer, there is always a final cause in some body system or other - stroke, pulmonary embolism, pneumonia, heart attack, liver failure, kidney failure, cachexia, etc. I hope he recovers whatever functions he needs to maintain his quality of life.
Thanks for the reply. He had fluid drained from his lung today (600 ml). He's breathing and sleeping better. For the first time in a while, I can say that he is better than yesterday.
I found out from the doctor that the cancer is more advanced than I beleived.
He wants to go home, so we're doing that. Hopefully the change in scenery will help him continue to improve enough to get treatment. Fingers crossed.
So sorry to hear about the onset of so many medical complications. The pleural effusions or pleural effusion May require a drain to keep at bay for quality of life reasons ( might I presume the pleural effusion is exudative and thusly related to his cancer). Stroke facial droop is lower face and being bilateral would require he had thrown multiple clots to both sides of the brain. Did he have a brain CT or MRI or MRA? Praying for your dad that he will get over this confluence of system complications to be treated with a platinum based chemotherapy.
I finally spoke to the doctor and got the full story. His cancer was and is more advanced than I'd thought.
In terms of the rapid deterioration, she said it was the "delta" in his liver over a short time that made him so sick.
She explained she has an 80+ year old patient with a slow growing liver cancer, who's liver is 90% tumor, yet he is relatively well, because his body had a chance to adapt.
In my dad's case, it spread grew too fast.
She rated him as a 30 or 40 on a 0 - 100 scale. He would need to be at 60 or 70 for treatnent. We are hoping for something short of a miracle after he gets home later.
My PCA followed a similar course. I was on ADT for a long time but suddenly micromets on the pleura of my lung became large tumors. I ended up with malignant pleural effusion in my left lung and a hybrid small cell cancer on biopsy. I had multiple thoracenteses to remove fluid and finally had an indwelling chest catheter placed. I felt so much better when I could breathe easily.
My chemo with etoposide and carboplatin was successful beyond our best hopes. I have enjoyed 26 good months with my tumors still there but not advancing.
Gram negative sepsis (from the urinary infection) is a very serious acute illness and the episode where he was unresponsive likely impacted brain function whether they call it a stroke or not. He needs PT and a dietary consult to find a way to increase his caloric input far more than he needs CBD.
Are you in a cancer center with comprehensive care available? If not I would look for a good large academic cancer center. PCa does not cause these acute changes.
Greetings FG. I am sorry to hear what your normally healthy Dad is going through. Just an experience that I had with urinary stents installed in me. When I had my first stent "installed" my doctor (urologist) forgot to prescribe an antibiotic and I ended up with an unbelievable UTI. It was so bad that I just suddenly fell on the floor in the local drug store. When I was admitted to the local hospital, they plugged me in with "online" penicillin. While in bed in the hospital I hallucinated by seeing a person who they told me was never there. So please make sure that the doctor prescribes a strong antibiotic when inserting and removing your Dad's urinary stent. (cipro is what I was using).
You are an ace for taking care of your Dad (give him my regards).
BTW would you provide us with your Dad's treatment center(s) and Doctor's names(s). All info is voluntary, but it helps us help him and helps us too. Thank you!!!
Thanks for the reply. His palliative care doc said he is on a very strong antibiotic. He was on 4 after he was admitted. The doc is not worried about infection, it seems.
His oncology docs are from Sloan Kettering, and we got a second opinion from MD Anderson. I wouldn't mind giving out the doc's name, but I'd have to run it by my mom before disclosing more .
Thanks for the response..... I'm a patient at MSKcc.... NO need for doctor's name. (I have two at Sloan.... Dr. Michael Morris is my Pca M O and Dr. Margaret Callagan is my Lung M O)...
Well I was comparing my oranges to your Dad's apples.....
I'm so sorry to hear that, like my pops, you're a patient. If you ever want to compare notes (or talk about anything, in general, for that matter) please hit me up with a PM. One of the things I'd like to do -- however my situation plays out -- is to make myself available for folks going through this hellish cancer journey in whatever way I can be useful. That's a subject for a new post.
This is really bad news on all fronts. Sadly, 25% of advanced prostate cancers will go into soft tissue and bomb us all over. One never likes to give up, but at some point, it happens. I too suspect a stroke perhaps, it appears that they are throwing everything in an effort to sort things out, but the body can only take so much pounding. Not good news I know, but be glad he got to be 72 and you have that much time with him. Damn prostate cancer, just never gives us a break!!!
Billyboy, thanks for the response. As you got to above: his hospitalist explained that this is "prognosis by exclusion". If nothing else is making him this sick, then it must be the cancer. This journey has been a learning experience, and what I've learned from the aforementioned is: cancer can make you hope for sepsis.
Happily, for the first time since the new normal, we got some good news plus at least a small victory today. For the sake of brevity, I'm going to respond to my own thread with an update, but first I wanna thank you again for they reply. Please feel free to reach out to me for whatever whenever.
Hi everyone, and thank you all again for the feedback. It's really been a comfort to me to be able to correspond with people who can empathize. In a paradoxical sort of way, this may be the best places on the internet that I've come across in my not-so-short-anymore life.
I have something good to say, for a change:
For the first time I can say that my dad has shown a marked improvement from one day to the next. As they say, correlation does not imply causation, but for the sake of posterity, here are some changes we've made in NO presumed order of importance:
-- we brought him home
-- we started cbd/thc
-- we got him on a steroidal anti-inflammatory (should have already been on for the excruciating pain everywhere, in my non-expert opinion)
-- discontinued ADT per his oncology doctor (for the general population: NOTE that my dad's typical adenocarcinoma of the prostate has "transformed" (per his onc doc) to small cell carcinoma of the prostate in a faster/deadlier way than typical mCRPC adenocarcinoma typically/does.
Yesterday the head nurse was not sure he would make the trip home. Today he is taking selfies and making "excuses" for missing a teleconference the day before. He easily ate more than I did today (I'm double his weight but have my own appetite problems these days, as I'm sure you guys understand). Suddenly he feels the need to stand up, and I'm like "finish building Rome tomorrow!"
We hold out hope that he will become well enough for treatment, and that he will then respond well to the treatment.
I fully understand that this is most likely a transient thing, but I cannot express with words what just one more good day was worth to us right now. Believe me when I say that it made multiple grown men cry.
I wanted to update this post by saying that -- while it's a meandering path -- he continues to improve. It's also a slow path, but, for instance, he suddenly gained back range of motion in his arms yesterday. I just wish there would be more clear signs of strength improvements, but we will see his oncologist if possible in 10 days, and get an update on much farther he has to go to get chemo.
Also, with respect to having had a stroke or not, I'm wondering if there could have been some sort of hypotensive hypoxic event that landed him back in the hospital, which may have caused a mild-moderate brain injury.
For instance, he only whispers, except the speech therapist noticed he could hit some high notes to some extent, and suspects his nerve is paralyzed. Why would that be the case? We had a private doctor evaluate him, and he suggested that it could be that when his lung was drained of fluid they hit a nerve (he was the first one to suggest paralysis). His oncologist was skeptical of that, and so was the speech therapist. His medium and long term memory is terrible, we are hardly giving him narcotics. The other day he asked "have I been sleeping on my back?" He has been sleeping on his back every day for a month. He referred to my son, his grandson, as his nephew to the speech therapist (he just used the wrong word), and could not recall my middle name, or what year he was married in. There are no brain metastasis, as of about 3 or 4 weeks ago.
I've noticed since he's been back, and since we've been taking his BP, that it is low. It's low at least partially because he's lost so much mass while being laid up, yet he was still taking hypertension meds after he left the hospital the first time. That night, he collapsed in the bathroom (which he got to on his own) and his BP was so low on re-admittance that they suspected septic shock, but no signs of infection, including the UTI, were able to be located. He also had about 600 ml of water in one lung, and an unknown amount in another which has since resolved. I don't think that was enough to cause this on its own, but surely could not help, and his breathing was terrible that night. I hope this isn't the case, or that if it is his brain will heal quick, and he can get enough strength back to start chemo, as he wishes to do.
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doc says 9-12 months more for my dad
I'm new here. 
Told to listen to his body
