Husband has been having radiation treatments this week. Handling it well so far with a bit of nausea and an inflamed feeling in his spine, but the pain is manageable.
Met with RO after for a prescription and I asked if there was any change between original CT in October 2018 and the CT’s taken to come up with the radiation plan and she said there was increased sclerotic activity in the abdomen and that she had increased the dose and targeted the beam at an area in his abdomen as well. I guess I had thought that the cancer could not be spreading if his PSA was decreasing so I was a bit surprised.
He was also told on Tuesday that he had stop using Zytiga for another week because his liver enzymes are up again.
When we left the RO’s office she said “we’re going to knock this back”. Radiation was supposed to be for pain management so now I’m really confused. Increased activity and radiation that seems to be targeted at slowing down progression I wasn’t aware was happening.
I’m an educated woman who has done a lot of research. I know my husband has incurable pca and he will die of this disease. But it’s so confusing for me to see so many men here that seem to be doing extremely well with advanced pca- living years and years, not that many mets, no treatment complications, etc. I don’t think my husband is doing as well. I find myself asking dumb questions here because I keep thinking I must be missing something- Why does everyone here seem to live forever and get by with just some fatigue and sexual dysfunction? And I want to have hope so it’s easy to think “he has a lot of hope - look at the example of all of these men” but I honestly don’t know if he’s an exception or if you all are! I want a straight up answer about what to expect and I just can’t seem to get it. Very frustrated. I’m sorry to put it out there, but I have no other place to say it.
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Monkeymamma
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What you read on hear is not valid for comparisons. It's just anecdotes from a non-random set of people who choose to communicate here for some reason. That's why I only rely on high level of evidence clinical studies, when I can. Also, EVERYONE'S cancer is different - some more aggressive, some less.
Your RO believes that irradiating whatever is in the abdomen is safe? How does she know it's a metastasis?
I’m guessing from the CT, bone scan and radiation CT. I don’t know. I asked about his spine mets once and she told me that what they have seen in imaging is very clearly bone mets. No question about it. My husband gets very discouraged at anything that isn’t “you’re doing great!”so I find myself not asking many questions. Tough situation.
A candy stripper sat down by me while he was in radiation today and told me how she had a brain tumour 20 years ago and was supposed to lose her ability to speak and die within two years, but when the surgeon went in to remove it she felt god in the room and her brain separated like a wave and the doctor just plucked it out and she never lost a day of speech and it had never returned. She returned. She told me god could heal my husband and I wanted to punch her in the face. Insert swear word here! Having a tough day.
I think the men on this group probably have better than average responses to treatment. One possible reason is that the ones who respond poorly get discouraged and drop out of the group, and of course more of them die than the men who respond well to treatment. Either way, they aren't here in the group anymore. Another possibility is that the people who reach out to use groups like this are the ones who try to educate themselves about the disease and may, on average, get better treatment from better doctors than the average cancer patient.
If you're not sure that your husband is getting the best treatment you may want to get a second opinion. Often the best doctors can be found at the teaching and research hospitals where the doctors tend to keep up with the latest research. In the U.S., you can find these places on the National Cancer Institute's "Designated Cancer Centers" list. See:
It sounds like your husband is anxious and depressed. I don't know how he could be anything else. Perhaps counseling or anti-depressants or sleeping pills would help him. Maybe he would be helped by having more interactions with people, perhaps at a face to face support group. In the U.S., Malecare and UsToo run such groups. A hospital social worker may have suggestions too.
This is a terrible, trying time for both of you. If you can get any emotional support for yourself from friends or relatives, don't neglect to do so. When I was diagnosed many years ago (I'm one of the lucky ones whose cancer was caught early and who responded very well to treatment) I went to work the next day and told everyone and talked freely about my disease - which enabled others to talk freely to me. I think it made a real difference. I was still anxious and depressed, but maybe less so than I would otherwise have been.
I wish you both the best.
Alan
P.S., don't whack the candy striper. She's dumb but she probably means well.
Incurable should not be confused with terminal. If treatments work your husband can still live a long time with good quality of life. Treatments do seem to work for most patients for a time. The difference is whether they work for a couple months or for years. Years is better as it beats the cancer further back and the damage has a chance to heal.
When I was diagnosed, I was started on Eligard only which causes a PSA spike before it starts working. That made my symptoms worse. They also found an unrelated bladder tumor. I ended up having my first radiation treatment the same day they surgically removed the bladder tumor, and had urinary retention after being released from the hospital. Suffice to say I had a very rough start to my treatment.
A couple months later, my PSA has plummeted and I'm feeling better despite being in the middle of chemo. Try to stay positive, it can get better after a difficult start. There are new drugs available and they're used much more aggressively now than just a decade ago.
I read your story. You have been through quite an ordeal and I’m really happy to know that you are doing so well on treatment.
My husband was also put on eligard after a month on firmagon. A month or so later he started Zytiga, but he has been having issues with his liver while on it. When we learned he had advanced pca his PSA was 1360. Firmagon brought it down to 275 in 3 weeks but eligard wasn’t doing much for the next four weeks after that. In 3 weeks, Zytiga brought it down to 111.8 and that was on Jan 3. All along, it has been obvious that his mets were getting worse and was confirmed yesterday by the RO. Zytiga may not be an option moving forward for all I know. I know radiation will bring his PSA down and hopefully shrink the tumours that we’re targeted. I’m anxious for the next PSA text on Feb 6.
With the disclaimer that I'm not a doctor and still new to this, there are still other treatment options available. Has chemotherapy been discussed? It might be a good option if Zytiga is causing problems. Also, Xgeva helps to strengthen the bones and can make it harder for the PCa to invade them.
One other thought: my understanding is that bone mets can cause liver issues. The cancer attacks the bones, which then produce large amounts of alkaline phosphotase, which can then affect the liver. At the start of my treatment my liver enzymes were slightly elevated and alk. phos. was very high, over 500 if I recall correctly. Perhaps the Zytiga isn't the sole cause of your husband's liver issue?
There are others here who know much more about the nuts and bolts of treatment than I do, and hopefully they'll add in their thoughts. As you've already noticed, most of us are unreasonably optimistic here, but we see that as an advantage too!
He never had a biopsy. By the time they had done the PSA test and MRI it was very clear that he had advanced prostate cancer. The bone scan later confirmed it was “extensive osseous metastatic disease with disease burden being far more extensive than was shown on the recent CT. Virtually the entire axial skeleton is involved with numerous lesions involving the skull, sternum/manubrium,bony pelvis, each rib and almost every vertebra. There are also appendicular skeletal lesions involving the scapulae, right proximal humerus, and left femoral neck, lesser and greater tronchanters”.
The oncologist said if she had to guess at Gleason without biopsy, she would guess it to be an 8.
Ok so sorry to hear ! To find such a critical situation at the outset of a disease has got to be devastating. I’ll let those who’ve been through this help you.
Is is frustrating, sometimes when I tell a medical professional what’s going on with us he just looks at me. I don’t like being in the dark either but that’s what I feel like most of the times theses days that’s why we have reached out and are going to get some different opinions. In my husbands case he had a bad outcome from his salvage prostatectomy that left MY husband with a lot of ruined kidneys and bladder and that was aug 2. Other surgeons and dr’s don’t want to touch someone else’s surgery patient with a 10 foot pole, I feel like that might be the same with oncologist but I just keep booking appointments online with top dr’s and I might have found one that likes a good challenge his assistant said. Don’t give up and a good dr once said don’t worry about the other patients everyone’s story is unique and different. My husband likes to keep his head in the sand a little too but I don’t t let him. If we’re going to fight back we have to be well informed . If you think your husbands dr is talking in circles she might be because she knows your husband likes to be told “everything’s great here” ask for her email so you can ask her questions without your husband. Us wife’s and care takers have to stick together 💓
I took your advise and left a message for the MO. I don’t like to ask behind my husbands back but I need to know.
Here on HealthUnlocked we only see survivors . All those that didnt pass the first round don’t make it here.. The few lucky ones that have survived for decades are an inspiration to us all.. I agree , some say that they suffered little thru treatments.. most do suffer .. that Rt grinds fatigue into for years to come. That was my experience . I got hit hard with negative emotions even suicidal ideation over my first years struggling to come to grips with my diminishment.. I understand that many men give up . I know one guy at 60!that refused all treatments . 9 months later her was gone. But I respect his choice.. we need a strong reason to endure treatments .. just love him and forgive him when he’s crazy. Anything to bring him some daily comfort and compassion.. It takes time to recovery.. Just get thru this stage first.. we all lament and anguish about what will happen in the future.. I say do you best here and now.. That’s all that anyone of us can do. A l o t of prayers also...Scott
I’m sorry - I just realized that my feelings are so out of place here because all of these amazing strong men need positivity and light. I just wish there was a place for women to talk about their fears and frustrations, and what it’s really like from the wife’s perspective.
Monkeymamma, I saw Darryl refer someone to this group healthunlocked.com/prostate... a few days ago. If you are on Facebook, there is an *excellent* group, "Prostate Cancer Wives Talk & Support" group. Here's a link: facebook.com/groups/Prostat...
The FB group has members from all over the world, but mostly from the UK and the US. A more open and supportive group you'll never find - honestly. Totally from the wife's perspective and no subject taboo.
Thanks for that reminder. This journey is a rollercoaster, but that does not change. Even if well intentioned candy strippers don’t realize when you aren’t in the mood for their testimony.
I can understand your frustration, like you I'm also frustrated. However this terrible disease will NOT keep me from my HUMOR. As Popeye says "I am what I am". So I look forward to watching candy striPPers and pole dancers since they help me forget that monkey on my back.
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Radiation 
Stopping Orgovyx after six months
I’m frustrated (damned if we do and damned if we don’t question doctors)
Pluvicto
