My husband was diagnosed in late December 2018 with PSA at 34, Gleason 10, and with all 11 cores that were retrieved positive and having between 40-80% involvement. After some delays due to insurance issues,the t3 MRI, CT scans, and bone scans, indicated that status is locally advanced with 3 pelvic lymph nodes enlarged.
ADT treatment of Casodex and Lupron started in March. Just had second Lupron shot ten days ago. He’s about 1/3 done with 40 EBRT sessions. All along, my husband has said he feels no different from how he was prior to diagnosis and ADT. He claimed to be totally devoid of ADT side effects. When I asked the MO before the second Lupron shot if effects are cumulative, she said it’s different for each patient. I had a lot of questions because I struggled with the lack of side effects. That may sound strange but it was causing me to wonder if that meant the ADT wasn’t effective for him. However, PSA is now 0.81 and testosterone at <.12 so treatment is working.
However, my observations have been that his cognition has been getting fuzzy. He said (until yesterday) that he was functioning well at work. After a truly fun Fathers Day, and after our son had left, he told me that work has been a “nightmare.” This was in contrast to two weeks ago when he seemed to be enjoying work and proud of what he’s accomplished there. BTW he started this new job 4 days before his diagnosis. Suddenly, work is going to Hell in a handbasket. Today he texted that he was going to quit his job.
After a moment of panic, I wrote back requesting that he take no action today and he agreed. I spoke to a trusted friend and to my sister which helped clarify my thoughts. Of course it’s crazy to do something so impulsive and financially devastating in the midst of cancer treatment. However, I want to respond with compassion and love. While talking to my sister, I was struck by the idea this seemingly sudden upset came soon on the heels of the 2nd Lupron shot.
So I wrote a note while he was still at work requesting that he consider three things: 1. That the way he’s reacting to work may be influenced by ADT side effects 2. That he speak to at least one other man who has had PCa (he knows several) and 3.that he meet with the oncology therapist at the cancer center. Much to my surprise, we spoke a few hours later and he had agreed to all 3 requests. In fact, he had requested the therapy appointment and had already spoken to two friends. He also admitted to having bouts of crying “for no particular reason” though of course he has plenty of reason to be feeling like crying.
I said “it seems like cancer has finally caught up with you” and he readily agreed. I don’t know if it’s the ADT or if he’s been in denial or if he’s been protecting his loved ones or all of the above. He has crashed hard. He’s going to check out state disability as a start. I’m writing this for several reasons. I have gained so much knowledge from everyone who shares their stories here. Maybe some of you will identify with my husband’s story and understand that you aren’t alone in fighting PCa. and your responses to it. Maybe some of you have suggestions to help us deal with this new normal. Perhaps you are a spouse or partner and you can learn something from what I think of as our Day of Reckoning. If your loved one is struggling and you are sometimes a target of his pain, anger, and depression, I pass along something a wise person shared with me: the acronym “Q-tip.” It stands for “Quit taking it personally.” It’s the disease that’s talking-not the man you love. Thank you all for your knowledge, courage, and humor. You inspire me.
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Emmett50
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Similar to your husband, mine has had no symptoms during 17 years of prostate cancer for except for the side effects of treatments including cognitive issues.
He had always loved his job of 41 years. I hoped he would keep working until 70 since he liked it so well. However, one day that all changed and he wanted to retire. He would not say why but I felt then it was cognitive related. He hated not working and got a simple part time job and did that for ten years while I took a job for insurance. All of this wreaked havoc with my retirement planning but I am glad we traveled extensively earlier.
Now the cognitive issues are taking a priority in our treatment plan as he has reached 75 and is tired of all the doctoring and pills. We are looking at stopping treatments and letting the disease run its course which scares me. I think any further treatment would worsen the cognitive issues. However, I am open to suggestions.
everything you've written seems par for the course. I am on Lupron since November of 2015. I was on a brief course of casodex. I have had six rounds of chemo. I am now still on Lupron as well as an ADT (enzalutamide), since early December of 2016. My experience, and not everyone is the same, is that the side effects of the Lupron and the of the ADT are cumulative and get worse over time. The fatigue has clearly gotten worse and I had obvious mental capacity issues (forgetfulness, not being able to "find" a word, etc.). I went for neuro-diagnostic testing which confirmed what I knew - my mental capacity was way below what it used to be. The dr was unable to tell me if that was directly from the medication, from the medications interactions, from the fatigue or a combination of all. I keep a note pad with me now, and I rely on my secretary a lot more than I used to and more than I'd like to. I have also cut my work back to very part time. As for the emotional side effects, I go from happy to sad to angry to happy in very short periods of time. there is no getting around the major change this is in life. and you have to balance between acceptance of the new normal, and fighting like hell to keep going. The counselor is a great idea, and talking to a couple of very close friends helps some. I tried the anti-depressant and was taken off of it due to a very negative side effect. I can't give you a magic answer - there is none. But there is still a life to live - a somewhat different life - but certainly worth living. In my opinion it is extremely important to have a open good relationship with the MO. They won't treat the side effects, but they will refer you to the correct drs to treat the side effects. by the way, my stats are as bad as your husband's, maybe worse. GS10. Fully metastatic. Keep going. Keep treating. And keep researching because there are other treatments in study stage or trial stage. Don't limit yourself to what your hospital has to offer. I'm at National Institute of Health. if you go onto their website and click on the National Cancer Institute (NCI) there is a search engine where you put in your disease, age and zip code. it then gives you a list of studies and trials at National Cancer Institute itself (Bethesda, MD) and at all NIH affiliated hospitals within 100 miles of you. and if you go to NIH and you're not from the area most studies provide funds for transportation. Best of Luck. Joel
Depression is a common result of a cancer diagnosis. Depression is also a common side effect of hormone therapy. He might be suffering from a double issue. I strongly suggest that he see a counselor who has experience with people dealing with cancer. He should also ask the counselor about some anti-depression medication to help him along. Many of us are in a similar position, there is no shame in reacting like a human being.
When I was first DX with PC and started ADT I had a hard time at work keeping a thought in my head for more than 10 seconds. I was also Dxed with depression and started on an anti depressive drug. Within two weeks I was back to my normal self. Was able to keep my job with medical insurance.
Emotions go crazy. At one change in meds, I took one dose and couldn't function, even at home off work. Cut dose in half for next 2 days and went to work. Did so poorly my employer pulled me off the job. Quit that med. and it took me three weeks working with local management and corporate med. dept. to save my job. Definitely med. related. Now on Xtandi and have been getting worse for months. Last worked April 15th. 4 days ago cut dose to 120 mg / day and added 10 mg prednisone. Yesterday was my best day in months. Today I'm up and able to work in yard, change oil in my RAV4 and stand up from the ground under the car without help. All chemo related. Darned pills/dosage effects each of us differently. This balancing act between medications and quality of life is really tricky. Even my wife commented I looked so much better and she didn't want me to stretch my life 10 more years if I was miserable the whole time.. Got a life to live and I haven't been able to lately. Five DR's appointments next week, scans and blood tests this week, and barring any unforeseen complications, back to work July 1st. Life really can be good with pCa once you get meds balanced with your own body. Good luck and don't give up because things aren't working right now. Small change made huge difference for me.
Xtandi can hit you hard. I started on 160 (4 pills) and after a couple of months, my PCa Uro and Onc asked if I wanted to drop to 3 or even 2. I said let's try 3 for awhile. Even on 3 I needed too much sleep (12 hrs a day), and was foggy ALL the time. So after one discussion as to whether the problems were worth the possible extra months of life, I stayed on 3 but talked about it a lot more with my wife. Then I asked if it was ok if I went to 2 per day. No problem. No problem with Ginseng for fatigue. No problem with MCP. No problem with MMJ. (I do like the way this guy thinks.)
So anyway, good luck with the Xtandi, stay active, exercise your brain, but watch out for the Prednisone. That stuff is needed for Zytiga, but not for Xtandi. And it has unpleasant side effects.
My thanks to all of you. It’s an especially tough week for him. He is gathering information for state disability and has an appointment set with the therapist affiliated with the cancer center and his treatment team. He was written up at work which is a great source of defeat. However, he hasn’t told work about his diagnosis other than to tell them in general terms that he’s got medical issues that require him to leave work on time. Is anyone familiar with what an employer can do or not do when an employee informs them about an illness? It’s a very small workplace in case the rules are different for smaller businesses.
The rules are different for smaller companies. You should be able to find lots of info on FMLA or family medical leave act. I worked for a large employer and greatly appreciated FMLA.
Work for big corporate America.. Med dept pulled me out of service. Corporate dept. canceled my FMLA acct. not active employee. Last worked April 15. Cleared with med, dept. to go back to work 1 July. Then need to get corporate to reinstate FMLA so Drs appt. etc, don't get me fired for laying off sick too much. 75% availability required and with 36 hr. plus turnaround on trips, one day often won't cover blood tests and appt. Good luck with your employer. Often smaller guys are easier to deal with, you are more than just a number.
Doug.
With a Gleason 10, he really should be on chemotherapy before his body is weakened by this bastard of disease. For fourteen years, I have written a lot about embracing positive people, prayer, and aggressive treatments. Feeling sorry for himself is not a good way to live; the alternative, in my mind, is not acceptable. In my opinion, he needs positive support from friends and family as well as those from others who are or have gone through the same ordeal. Most of all, he is a Statistic of One! Matters not what the global numbers are, his is the most important and the only stat which counts. He can find those people here or one of the many PCa support groups in your area.
I suffered from depression and anxiety starting at age 43. I was an executive. The stress of work caused terrible pain throughout my body. So after years of treatment while still working at difficult, high level jobs I had to retire at age 54. That was 20 years ago. Four years after retiring I finally found a drug which stopped the depression and anxiety: Cymbalta which is now generic duloxetine. I was dx with Gl9 PCa in 2013 at age 69. If I had not cured the depression and anxiety beforehand I'd be dead now. I could not have taken the news or the side effects of treatment. IMHO it's impossible to fight cancer until you stop the depression because it destroys your will to live.
Break60, you speak the truth about depression. It can kill .. and produces no fruit at all.
I reckon that we all can relate to the day of reckoning . Im57and on disability for 3yrs now. It is as simple as Without Testasterone many men don’t function well . I’m including myself in this. I’m happy to be alive, but not anywhere near normal in many ways. I’ve been thru anger ,depression and lots of frustration due to my diminished capacities . I get mad when I cant do many of simple things that used to be easy for me.. men! We’re supposed to be strong providers and protectors. His <.12 is great , going in the good direction. Be happy about this. The rest takes time for most to adjuster .. 3yrs in ,and I’m just now feeling a bit better and accepting my lot. This stuff knocks us for a loop. . He must plug thru the misery , it should get better with time.. APC is a lot of drama for family and spouses. Our emotions are out of wack. W3 ar3 in male menapause for life. We don’t want. T or rising Psa ‘sfor the preempts a return of Pc . Enjoy the good numbers. I pray it will improve with time and acceptance. It’s a new way. of life. staying active and positive I believe will bear good things for him .. Tell him to hang in there. We all go thru the same sh**, none of it pretty ,but with luck , prayers and I Believe help from above we can endure what we must to be around longer for some good times.Make the most out of everyday.... Take care.. You are doing well by being here on this site.. who else besides those in the same boat can fully understand? No one really...I think it no T...
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