Trying to avoid feeling that I am on a downward slope

[BrentW]

I have stage IV prostate cancer, with which I was diagnosed in 2004. My wife, Jacqui, is now registered as being my carer.

She had resisted registering while ever I was on Zytiga, on which I had been placed on repatriating to the UK in 2017, as I had generally coped with it well -- apart from a little confusion. When this failed, about two months ago, I was placed on a strong dose ofenzalutamide, and the side effects began to pile up. The confusion deepened, and was joined by fatigue, while physical side effects built up too -- fluid retention, aching joints and muscles, tender teeth (!), dry and itchy skin, restless leg syndrome and tender testicles, among others. This finally encouraged her to register officially as needing to care for me.

At the time the Xtandi was prescribed, in front of Jacqui I expressed concern that my treatment options were becoming limited. The oncologist answered vaguely by saying that new treatments are in the pipeline and only awaiting NICE approval. I think the lack of specificity disturbed both Jacqui and me.

Regarding my current treatment, the low point came about two weeks ago when I was reduced to hobbling like an old man (I am currently 63 and previously did not hobble at all). Every muscle had developed some rigidity, making movement challenging. Even my rib cage was aching. Jacqui and I were in a motorway service station at the time, where we had stopped to use the loos, and I could see both the fear and frustration writ large on her face as she strove to walk with me but also to get us away from the madding crowd. Thankfully, the oncologist saw the sense to halve my dosage and I am now much improved.

Jacqui is not a member of this community. So, I shall take the liberty of asking a couple of questions on her behalf:

1. Are there any carers in the community who face similar situations in their partners?

2. How do you cope with the frustration and fear?

3. What do you cope regarding the nagging sense that your partner is on a downward slope regarding both treatments and disease?

My apologies if this is not relevant to this community, but I will pass any responses on to Jacqui.

[Mrtroxely]

the enzalutamide messed me up, made life unbearable.

Most of side effects you mentioned.

But it was the head stuff! Crushing despairing lows and no sleep that did it.

Took 2-3 weeks for Enzalutamide to come out my system.....

Applutimide was offered instead.(very similar....)

I went to the doctor thinking I had 2 months left...

Then

Consultant said I had a year if was unlucky! Better than 2 months!!!

Then

Oncologist says I can have years.....

Then

my research says ive got 3-5y left?

So.....

what is it I really want? What am I really doing here? Who do i want to impact?Just to live as long as possible or find quality?

Guns blazzing and go for each and every trial?

Or the other.....

Your partner will have her own thoughts to....hopefully she has friends n family she can talk to, also cancer groups support.

You guys mustve spoke about realities if you been diagnosed in 2014...

She will know the script.

In a relationship she probs react to your own fears(and the Enzalutamide had me shuffling n mumbling like an 80y old!!!)

Hope things go as well as they can do for you guys.

[BrentW in reply to Mrtroxely]

He Mrtroxely. Jacqui and I have thought a great deal about QOL issues. My motto was for many years 'got to have more fun'. I was never sure how fun was defined, but we did much travel throughout the Americas while we thought about it. Then a medically-enforced early retirement, with no pension (yet), came along and hampered things. We are back to talking about it again, however, with talk of European travel.

How long will I last? I haven't a clue and nobody seems willing to give me an estimate. But it would be nice to squeeze in a holiday or two before I peg out.

I used to cope by burying myself in my work. However, I now find I have only 1-2 hours in which to be productive each day. How to use them? A tough question.

[hansjd]

Hi Brent, Enzalutamide rarely works for long after Zytiga fails, so I think you should never have been prescribed it. For some people it also causes the debilitating side effects you have suffered.

When Zytiga 'failed' what happened? Did your PSA increase significantly in a short time? If so at what rate? The doubling time is important. If the doubling time was 6 months or less then yes you could consider that it 'failed' although if your PSA was still low then you can continue to take it for a period of time with a switch from Prednisone to Dexamethasone. This has been shown to be beneficial in many men - extending the efficacy of the Zytiga. If you haven't done the switch then I would suggest going back on Zytiga with Dexa.

If these suggestions are not appropriate for your situation, then consider Lu 177. Not sure if it is available to you in the UK yet, but check out Germany, Finland, India and Australia. Here in OZ it's cheaper than in Europe, but of course there are greater travel costs involved. Summer is coming though and much nicer weather than UK especially for someone used to the Caribbean. 🙂

[BrentW in reply to hansjd]

Thank you for your advice, Hansjd. I shall be sure to discuss this with my oncologist. My PSA had been creeping up, but once I reached 81.9, coupled with pain in my pelvis, my oncologist decided it was time for a switch. The Enzalutamide brought my PSA down to 33.3 in one month, so at least it's achieving something. We shall see what the next month brings. Right now, my wife and I are discussing quality of life -- for both of us.

[hansjd in reply to BrentW]

Hi again. I understand what you are saying about quality of life and of course that is very important. However, I think a lot of your current decreased QOL is attributable to the Enzalutamide. I think you need to try something different asap.

I would seriously consider Lu177, but aside from that there is the option of chemo. Have you had any chemo yet? If not then you should discuss this with your MO. The side effects of Docetaxel are not difficult for most people (including me). If you have already had Docetaxel, then Cabazitaxel is an option. I've read that the side effects with this are even less.

You mention pain in the pelvis. Do you have a number of bone mets there? If so then SBRT (a form of very directed external radiation of about 5-6 treatments) can be very effective in treating the pain (and killing the cancer cells). You should discuss this with your MO.

I guess what I am saying is you have many possible treatment options that will improve your QOL. Don't resign yourself to feeling that you are 'finished', because honestly you are not. Stay strong. Good luck with your MO.

[beogradjanin in reply to hansjd]

Good words ♥️

[DesertDaisy]

Hi Brent, I just want to let you know there is a group here on HU for caregivers of partners with prostate cancer. healthunlocked.com/prostate...

I haven't joined the group as of yet, but your wife may want to check it out.

My husband is currently doing well and I am thankful for that. For the most part, I quietly cope with the frustration and fear. I don't want to let my husband know how I constantly worry.

All the best to you and Jacqui.

[spw1]

Hi My husband is 57, diagnosed 2 years ago with adv PCa. Since January, not much has been working for him. Docetaxel failed despite giving 4 infusions and Cabazitaxel, after one dose, is not showing signs of improvement. From being an active guy in full time career, he has had to accept pain, break from work and limitations of movement. Even two weeks ago what he could do is now physically painful. I do not get frustrated with him but I do get frustrated with the system. I cannot even look up his blood test results on my own. They will send them when the nurses get the time. We have to wait with stress to find out what is going on. I have tried to take a spiritual approach and leave the outcome of what happens to a higher power and I do like to focus on the moment. I spend as much time as I can with my husband doing things he likes and encourage him to come out to walk with me and the dog even though it is only possible with the help of painkillers and very slowly. We just do it together and mindfully. None of us know how long we have got. So I have strived over the two years to talk of my fears with my own friends outside of his hearing or I go to Maggie's. Do you have a Maggie's near you? I cannot imagine a life without my husband and so I do not go there. I am very proud of him and love him very much. He still tries to do what he can for me, our offspring and the dog. He is as active as possible in doing the jobs he always did for us. When out and about and despite his pain, he will pick up litter other people have dropped, step up to be helpful to total strangers and be very considerate of others as he has always been. The disease is cruel and has reduced his strength of body but I am hopeful that we might find something that controls it for him. I occasionally speak on personal messages to other carers. It might be good for you to not imagine what she thinks or feels as she might not be as fearful or frustrated as you may imagine in your love for her. She might be more concerned for you and be upset on your behalf.

[BrentW in reply to spw1]

Thank you for this reassurance, spw1. You might be right about my being overly concerned with how she feels, or what she feels. Having been diagnosed in 2004, I have gone through a whole gamut of medications and surgical procedures. Despite these, I have tried to do all I can to remain active. I exercise for 30 minutes each morning, joining classes on Goldster.com, for example. I do all our cooking, including baking bread -- by hand, not in a machine. Whatever chores Jacqui sets -- make up the bed, clean the shower, feed the cats, water the garden -- I take on with as much joy as I can.

But this latest drug has in terms of side effects gone way beyond anything before. It has brought me up short and had me thinking about my mortality in ways that I do not welcome. I do all I can to stay in the moment, but sometimes it's a challenge for me and (I am projecting here) I think it is for Jacqui. I am really lacking in energy; today's midday nap turned into a 3 hour marathon. I woke to find Jacqui busy attacking the weeds in our overgrown driveway and was immediately consumed with guilt -- that most pointless of emotions.

So, such sharing, caring responses as yours are a great help, allowing me to tell myself that we are not alone.

[spw1 in reply to BrentW]

I feel for you as you seem to be doing everything in your power to keep as healthy as you can. But please do rest when you need to. My husband has not had many side effects of things; he was on Enzalutamide and could cope on the full dose. The trouble is that it did not work for long. His MO in the UK says that NHS does not allow him now to try Zytiga. You seem to have been allowed to try Enza after Zytiga. Our MO tells us these rules as if they are writ in stone. Keep up the exercise, bread making and anything else that you can do. I am convinced that doing something productive keeps the mind from going into dark thoughts. One of our best books to read together and to dip into is the Untethered Mind. Difficult to put into practice all the time but certainly a good one to have by the bedside.

[Bethpage]

I am signed up for the caregivers' group here on HU but seldom see a post. There are FB groups for wives/female partners only. I admin one that has 1500 + members. Our members are from US, Canada, UK, Germany, Caribbean, and some from Australia. If you think she'd be interested in our support, you are welcome to inbox me.

[GAdrummer]

I have a charm bracelet that has among so many treasured memories a charm from a trip to Mexico City 45+ years ago: a silver donkey carrying two baskets (one on each side), that hold gems in the rough - emeralds. I feel like that donkey supporting my husband and my daughter along this life journey. Some days the weight is overwhelming and I want to stop and drop the baskets. My husband has improved so much as to become dangerous. Now I am afraid to go into the city for supplies or to assist my daughter for fear of what I may find or not find when I return. Wanting to help more around the house, he has destroyed documents before I could file them, opened mail and endorsed checks that were intended for charities. His mind seemingly suddenly has holes in memory and understanding. I find myself wanting to explode at him, but I know that it would not change the situation. I just have to shed the angst and step over it to deal with the current problem (like what happened to his missing credit card and Covid-19 vaccination card).

[Hidden]

Hey BrentW! this is all relavent here . Imho we all go through similar stuff with pc . Iwas hobbled mucho by this . Sarcopenia , osteopenia , djd and other aging problems all came on me at once . At 53 I felt 83 . My problems are from no T and the first two years of depletion. I’m now 61with 7 yrs no t no signs pc . Fear and anxiety while pc is on the rise is normal . I’m glad that cutting the dose helped you . Hang in there . I do canaby products to help my moods . Take care …Cool hair and beard!

[raoulmaher]

Just like to say - well done on making 18 years good for you - I am on enzalutimide too kindest Raoul

[Zengal79]

I am my partners main support person in this journey. He’s 5 years into this now. We knew of his diagnosis when we began dating 2 years ago, but he was smooth sailing at that point. We fell madly in love. We relish life. It’s so unfortunate that it takes some of us getting into situations like these before we start really living… and we have been LIVING.

As my partner has declined the last few months, things have changed in some ways but we strive to give the cancer only the time that it requires. Some days it requires all the time. Those days are hard. 

For me, it is important to keep myself appropriately nourished with healthy foods. I take time for myself by attending yoga classes. I meditate. I breathe. I pray. It’s equally important for her to maintain a level of self-care. This cannot be stressed enough.

My partner and I have maintained a level of intimacy that is quite important to our spirits. When he’s battling with his own thinking as he is facing this, I try to offer grace. Grace when he’s angry, comfort when he’s sad. He does the same for me. We are a team.

We have ferocious optimism that there will be more joy to come. We look for it, we create it when we have to. I consider it an honor and privilege to be there for him during this time no matter how hard it gets. I’m sure your Jacqui feels the same. This is what love does. Pain is the price we pay for love. Love is worth the price. Best wishes to you all in your journey. Enjoy all the moments you can.