How to cope with the "new normal" - Prostate Cancer C...

Prostate Cancer Caregivers

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How to cope with the "new normal"

Hello ladies,

Looking for advice!

My guy, age 52, was Dx on August 10th with stage 4 b PCa. He began feeling bad in July. So, starting in July, our life completely changed. He was very healthy and active up until then. Now, he is tired and fatigued most of the time. He also suffers periodically from bone pain. He is also very emotional. It is like I am living with a different man. I am still struggling with accepting this "new normal" life... Any suggestions on how to move forward, accept this new life, etc.

Thanks in advance,

Connie

38 Replies

Hi Connie and welcome to this group. None of us ever can say we expected to be here but here we are.

My husbands PCa was diagnosed in January 2018. That too was the start of a new relationship with a new man thanks to this ugly disease.

I cannot say I have “accepted “ this new normal but have grown to try to live each day/week without overthinking everything.

My husband has everything you mentioned and he too was very fit and active in hockey, boat racing and physical work as a plumber.

I too live with fear of the unknown. I am only 49 and he is only 62. Been together over 27 years and can’t think of life without.

My best advice is to always make time for yourself if only going for a coffee with girlfriends or shopping etc.

Try hard not to argue through his mood swings/pain, hard as it may be.

Listen, really listen, to everything he says or feels.

Love each other every minute you can, whether it’s a simple touch or glance or hug.

And most importantly...laugh!!!! It really does help me and him.

I am sorry I couldn’t give you better advice. I am struggling as you are but glad this forum is here. ❤️

Sheri (wife, caregiver, cheerleader)

Tub111 profile image
Tub111 in reply to Tub111

Oh yes also never be afraid to ask for help from family or friends if they are open to helping you two through this battle.

I unfortunately have no family left on my side but have 2 wonderful girlfriends helping me when needed.

My stepchildren and his side of family are not really grasping the reality and have not accepted the facts so they have not been easy to talk to.

Make sure also he spends time with his close friends too. I know we all want to spend every minute with each other but never feel guilty for needing time away. It tightens the bond I think and gives both a chance to clear their minds throughout.

Just my two cents...

in reply to Tub111

Thanks Sheri... I appreciate all of your kind words... I don't have much of a support group... Everyone just keeps telling me everything is going to be ok... How can everything be ok?

What is your husbands treatment? Koy's treatment is lupron, zytiga, prednisone and zometa (for the bones). If he didn't have the fatigue and pain from the SE, I think it would be easier to cope???

He has a bone scan tomorrow and we see the oncologist on Monday. He also gets an iv infusion of zometa on Monday. The last one caused him alot of bone pain... Praying that doesn't happen again!

Tub111 profile image
Tub111 in reply to

My hubby is on the same minus the zometa. You can see my profile for all updates.

As for support, I received the very same from most people. Unfortunately many don’t know what to say or do and seem to brush it off as if it were the flu. That’s how his family has been, with the exception of one sister who is fighting uterine cancer at the same time.

Sadly unless you are “in it” not many seem to “get it” (the fears, frustration, moods, preparation of paperwork, updating wills, power of attorney, preparation for tests, the WAITING for results, let alone the endless tests and daily meds)

My hubby has extensive pain in bones which also fatigues him on top of SE but just having had surgery over a week ago we will not know much till this Friday. Then the second bone scan in December and appointment with 3rd oncologist after that.

All I can say is take it day by day. Don’t overthink, that will drive you both crazy. Absorb every “good painless “ moment as it comes.

We are on month 10 since initial diagnosis of “less than a year”

Blessed and grateful for every single day we have had since then.

Hold strong. Lean on us here. ❤️

spikezoey profile image
spikezoey in reply to

Hi, remind me of what SE stands for?

in reply to spikezoey

SE = Side effects

spikezoey profile image
spikezoey in reply to

Duh! thanks!

in reply to spikezoey

😍 I am struggling with this horrible diagnosis... I think we need to create a prayer group forum... your thoughts?

spikezoey profile image
spikezoey in reply to

I think you will find a lot of takers for a prayer group.

in reply to Tub111

Sheri, I have read your post of the adv stage forum a few times and just haven't been able to respond as my heart hurts so much for you... please know that I continually think of you... And that I hope and pray for the best for you guys... I will probably message you once I can put all of my thoughts into words... right now, my heart hurts for you!!!... BIG HUGS and PEACE - hope this helps, at least a little!!!!

Tub111 profile image
Tub111 in reply to

Don’t you worry about me. Focus on yourself and your man. You are strong and show that just by being here...💗no need to message me but know you always can. Hugs

Hi Connie, So very sorry about your husband's diagnosis, but you've come to the right on-line group for advice & especially for support. Sheri's replies to you are right on target. When I first joined, she responded to my expressions of loss of our previous relationship with deep understanding & encouragement. I second advice such as -- don't overthink; don't argue back; take time for yourself; give/accept all gestures of affection, however small/simple they may be. And, most importantly, one day at a time / one week at a time. Laugh whenever possible, and so on.

With heartfelt wishes that you may find the strength you need.

Lyubov

Tub111 profile image
Tub111 in reply to Lyubov

Thanks Lyubov and thank you for your caring and compassion also. I hope all is good for you so far?

Sheri (wife, caregiver, cheerleader)

Lyubov profile image
Lyubov in reply to Tub111

We're postponing putting our house on market by about 2 months because our apt completion has been delayed. Don't want move 2X! Thus bit of breather, hubby says he feels "calmer." Overall, yes, he seems to. Thanksgiving reunion with family out of town & looking forward to that. About 60 are expected at this annual event!

Have a nice Thanksgiving if you're celebrating. Not sure if you're U.S., Canada, U.K., or Australia? Your writing is beautiful!

Lyubov

Tub111 profile image
Tub111 in reply to Lyubov

That sounds like a good plan. At least you’re prepared now.

So wonderful you have this great reunion!!! It will certainly be one to be cherished.

We are outside of Vancouver Canada so already had our thanksgiving with just the two of us. Then had second one including my best friend who has been a rock for me as well as hubby. Don’t find many like her and I hold her close to my heart.

Have a wonderful time and indulge in everything!!! You both deserve it!

Ps: thank you for your kindness. I write only what comes from my heart

My experience is the same as yours. Friends don’t understand that my life mostly consists of caregiving tasks that I do not see as optional. They will tell me that John is tired of going to doctors like I am the mean person dragging him in. I say the alternative is to give up and let him die which gives them pause. People just don’t relate to this 18 year long life changing disease. Good Health is everything.

When I agree to do something fun I realize it just takes time away from the necessities and negates the original purpose of the fun anyway.

The people here are the only ones that seem to understand and coming here is my best relief.

Tub111 profile image
Tub111 in reply to Grumpyswife

I totally understand exactly what you wrote. I have only been in this for 11 months but it feels like 11 years. Friends tell me I look tired...no kidding. Family call and say how’s everything...then rush conversations to their problems.

We all understand life goes on in others lives. I get that. But they have opportunity to choose what and when they do things. We do not. This crap now runs/consumes our daily lives.

I run our business and manage employees, books, material orders and quotations all while tending to everything needed and being the caregiver/researcher/nurse that I wouldn’t change ever.

Couldn’t be more happy than to have this little vent area as my go too as well.

Unless you’re in it, no one gets it.

Hugs

Sheri (wife, caregiver, cheerleader)

in reply to Grumpyswife

I totally agree... I think most people think prostate cancer is the least severe cancer... we thought so too when Koy was first diagnosed. We were told, take a shot and some pills and the cancer will go into remission. Wow..

Sounds like an easy plan. Then comes the side effects... the change in life style... The "new life". I have been reading postings on the Advantage Stage PCa forum... The are alot of treatments out there... but, they all have SE. So, like you stated, either you continue the treatments that are offered or you let the cancer take over. The doctor visits are a most so that we can monitor their PSA. From what I have read. when the PSA rises, then a new treatment is up for discussion... So, yes... we have to keep dragging them back to the doctor... Oh how I wish this were not true!!!...

Caring7 profile image
Caring7 in reply to

If you have a medical oncologist who said that stage IV prostate cancer would go into remission (whatever the treatment) -- you need a new oncologist. Stage IV does not go into remission -- all care is "palliative" (minimizing symptoms and progression (note: not hospice palliative)) not "curative" (aiming towards remission). Maybe some day but we're not there yet.

You might definitely seek a second opinion, ideally with a prostate-specific cancer researcher. We see someone at UCSF 1-2x / year, and it has been wonderful. He doesn't do regular treatments but advises on big plans and answers a lot of detailed questions, and he is up on all of the latest things in prostate cancer and only prostate cancer. This person can work with regular MedOnc (who sees all kinds of cancers and can't keep up with everything on every one). Look around this site for ideas -- or just post that you are looking for a research expert in whatever area you are in.

Also, not sure if you're doing this but It seems like your husband should at least be discussing Taxotere chemo. This is now the standard of care for diagnosis with advanced prostate cancer. See CHAARTED study and also STAMPEDE. The idea is that the early chemo knocks down the worse cells. On the chemo scale, it's usually on the milder side (just one chemo drug). For extensive bone mets/pain, might also try RA223 if your insurance will cover it. This is a diffuse nuclear medicine injection that targets bone mets all over -- esp. little bugger spots (my husband had a lot of those).

Also do not need to accept just the initial care and "oh well, the side effects." My husband took one dose of zometa (age 51) and said never again, so they switched him to Xgeva, which has been better. That's not typical but for him, Zometa caused so much pain and fatigue. He also stopped RA223 after 4 (of 6) doses because he didn't like the SE and it still seemed to make a difference. For bone pain - talk to a radiation oncologist, who will give you the best advice about whether to go ahead and zap some in a focused way or to wait. Radiology at this point is also palliative - for pain reduction, and it is often a pretty short course (as little as 5 days) so not too much of the SE there.

Doctor should be willing to talk about SE, options, including pain meds.

in reply to Caring7

Caring7, Many thanks for your response. Our oncologist said if his PSA is below .1, he will be in remission. So, if PSA is undetectable, he is in remission... we were told that prostate cancer can not live without testosterone... The tumors will began to shrink... Were you told something different?

Caring7 profile image
Caring7 in reply to

Dear Connie

I'm not a doctor but I would strongly (as strong as I possibly can) urge you to get at least a second opinion from a different oncologist, and if at all possible, get an appointment at a research center (UCSF, Hopkins, Dana Farber, MD Anderson -- that covers 4 regions of the country). I am gravely concerned that your partner is not getting the best treatment or advice on treatment with an oncologist who uses the term "remission" with Stage IV Prostate Cancer. In 4-1/2 years of going through treatments with my husband (diagnosed with advanced stage IV, "hot" tumor at diagnosis, significant spine mets (so way out of the pelvic area) - no doctor has *ever* said the work remission. And we have been told very directly there is no remission for this stage of this type of cancer.

Reversing progression - yes; stabilizing - yes; for a while, starving of testosterone - yes -- but on this last one, unfortunately, the cancer starts figuring out "work-arounds" and even producing its own testosterone (over time). The cancer will eventually progress to what is called "Castration Resistant Metastatic Prostate Cancer" (CRMPC) -- this means, no testosterone but advancing cancer. My husband got to this stage about 18 months in - and that was with early chemo (which really, as far as I can tell, should definitely be an option offered and encouraged to you -- as I think I posted elsewhere). And even with RA223 and Provenge (Immunotherapy). So we were bumming. FYI - in September he rode in a bicycle century (not thrilling his doctors because of the pressure on the prostate but he finished and it was all right). He has been pretty active once his treatments started with some occasional down times. Everyone's case is different but if you look at the main site you will see how many men are living really full lives even with this damned diagnosis!

The second line of testosterone inhibitors, Xtandi and Zytiga, are incredible (and incredibly pricey) drugs. These were used only for CRMPC when my husband was at that stage, but now they are starting Zytiga as a first-line treatment (which I think your husband is getting? -- so that is good, with the prednisone, which is not so great for mood swings and volatility!

From our experience (and my husband has a medical background and we are pretty well informed from much research over 4+ years), your partner is getting some of the cutting edge treatment but not all of it. Taxotere should be on the table, at least. Also - I think I posted elsewhere, if the Zometa gives awful SE then ask to try Xgeva (might require an insurance petition but my husband didn't have any problems switching -- everything hurt, even his eyelids on Zometa!) Plus Xgeva is a shot rather than an IV!

My last recommendation is that you definitely see a Radiation Oncologist to assess the bone pain situation and make a plan and recommendation. He may recommend waiting to see if the other treatments start to work, but much depends on the pain level. From the very start we were told that the primary concerns were (1) getting PSA down and hoping for shrinking tumors (some mets even go away); (2) pain management (and my husband had no symptoms until he got a hairline fracture in his hip from the mets). So - your husband must have worse pain and should definitely have that assessed, and for the bone, radiation oncology is the best. (PS RadOnc is our favorite doctor after the researcher!) OK - last thing! -- if he's in that much pain, ask for real pain relief as in narcotic pain relief, or see a pain specialist if your MedOnc doesn't want to prescribe anything. Bone pain is wicked, and pain breeds more pain, and stress -- not good for fighting cancer. And with less pain, he can be more active, which is good physically and mentally and emotionally.

It is so much to take in and so confusing, so take your time to sort it out. Check out some of the other postings, esp. on the main site to get other views, but I think you'll see that they are consistent with what I'm telling you. There are probably some docs out there using "remission" loosely but it's not a word I see on the site very often either.

I felt a bit bad with my original post because it was more down than you were getting from the doctor, but really your best hopes are in the best available treatments, and being fully aware of what you're dealing with. If you say where you live, I and others can give some suggestions for research facilities in your area. We really love going to see the research oncologist, and when it all came crashing down at the start, it was the best doctor's visit ever. He gave us a big picture, totally honest and a bit upbeat (glass half-full guy!), but we left with a much clearer idea of what we were dealing with.

Take it one day at a time. This tired phrase takes on significant new meaning. I hope that you can find some rest and he can find some relief from symptoms and side effects.

Best wishes to you as you sort it all out and do what is best for you.

- Brenda

in reply to Caring7

Hello Brenda,

Thank you soooooo much for all of your input/advice. Koy had a 2nd CT scan a few weeks ago and the scan showed mets to his liver. He had a liver biopsy which confirmed it was prostate cancer. Friday. Dec 14th, he started taxotere. We are in Houston, TX. Early on, we had second opinion from md Anderson which indicated same treatment (lupron, zytiga, prednisone and zometa) as Houston Methodist. MD Anderson did say they could start chemo right away, only if Koy wanted that. Neither doctor pushed chemo treatment... we liked the Methodist facility and doctor better, so went with them... now we have no option... psa is undetectable and cancer is progressing... only 3-4 months of adt therapy and on to chemo. THESE ARE VERY FRIGHTENING TIMES!!! PRAYING THAT WE GET THIS HORRIBLE MONSTER UNDER CONTROL... Koy is only 52, and I am 51... Too young for this...

Thanks again Brenda for all of your insite...

Ladies... how do you stay so positive? I have been living this nightmare for a little over 3 months. I feel paralyzed. I am so afraid... All of my dreams have been shattered... We were suppossed to grow old together... retire in a small fishing town. Now, I struggle getting through each day! His QOL is so different... He tires easily, gets winded, etc. It is hard to see a 52 year old man in this condition. 😢😢 He had his second bone scan today. We will find out the results on Monday. We pray the treatment is shrinking the "c".

Caring7 profile image
Caring7 in reply to

First few months/year are the worse. Everything is so new, so many medical appointments. We went out to dinner a lot, took time to go to the beach after doctor appointments, just took at easy when we could. And laughed. I found our old "Far Side" comic book collection and we would bring that to chemo and read/laugh about it together.

Try (hard I know) to not let the disease run your life but just become a part of it. And it's ok to give him his space to deal with it.

Not for everyone but it can be helpful to know you're not alone. Patients and caregivers can attend.

pakb profile image
pakb in reply to

I agree- we are 15 months in and my husband was 49 at diagnosis. He has GL 9 and had almost a 700 PSA at diagnosis. He was also very fit and in good health otherwise. We try to stay active (he lifts weights in the gym and does some stair climbing to combat fatigue). We also have three teenagers which can be a blessing because it helps us not focus on the Pca all the time- but it also worries me because I'm not sure if my kids are OK and how they are dealing and if they aren't telling me. But you just have to decide EVERY day that you are going to make it the best day you can. I now keep a journal. Seemed silly to me at first but if I wake up and try to write some things I'm thankful for while I have my coffee... it really helps. These online forums help me too- I can vent and I ask a lot of questions/read a lot on the Advanced Prostate page. It is so hard- but you can either find the good in each day or not. I have to make that the only choice I have in order to get through it. <3

I hear all that you have written/said, and i have been nodding yes throughout. This is new to me, also. I, too, planned on growing old together. Here is what works for me. THIS GROUP is amazing! Keep coming back ... daily ... and read all the information and comments. Second, Laugh, laugh more, laugh a lot!!! This is very helpful. Third, I like knonwing what is next, what we can do after that , and then after that. Knowing that his doctors agree on a plan for YEARS is very comforting. Fourth, we have a TEAM of doctors. A GP, a Urologist, a lead Oncologist (for us, at Stanford University Medical Center), a local Oncologist for the chemo treatments, and soon to be added, a local Radiation Oncologist. Having a team makes us feel that we are getting the collective best.

Friends and family can start a 'death watch', which really, really upsets my husband. Find one or two female friends who can listen and empathize.

Lastly, share memories that mean a lot to both of you, and work on creating some new ones.

Nancy

in reply to kick-prostate-cancer

Hello Nancy, Thank you for understanding!!!...

How old is your husband? When is he starting chemo? Has he been given anything for the bone mets?

You guys are a few months ahead of us on dx.

Aloha Connie, So sorry you've joined this "club" and all its crazy ups and downs. I've been in this for over 4 years now (which is better than we thought when Joe was dx at age 51 with advanced Prostate CA (in his spine). The testosterone deprivation (Lupron, Casodex, Zytiga) puts the guys in menopause -- literally: hot flashes, mood swings, depression -- which in men often manifests as anger. As so many people wrote here - resist the urge to engage in a fight. I figured out eventually that if I fought with him, it was just what he wanted and he could blame me for everything! Which was not so good for me even if I knew it wasn't true. I've gotten really good at floating out of the room when he starts nagging and picking. And yes - do stuff for yourself -- even if that is just an extra long shower! Or taking a little more time with your coffee. Getting a massage or something pampering is really good. You have to let yourself do this and momentarily put aside all the other demands. If you are not good with yourself, you cannot be great in these other ways.


Hi, my hubby also has IVb Gleason 9 at age 51 with his spine entirely lit up by mets; Dx was June 1 of this year.

But I don’t know fully what you are going through, TBH, because luckily his regimen (zytiga + digarelix, plus prednisone, metformin, and avodart) are not impacting his quality of life other than the sex life and some tiredness, emotionality, and warm flashes. I don’t have any care-giving to do and he’s still working and doing his thing. He still rides and did a double century ride a few months ago. We think the riding is what is keeping him alive, TBH. He is able to ride because he doesn’t have bone pain like your hubby does.

I do know that eventually when this stops working and he becomes castratrate resistant and has to have chemo and other things, I will be a mess and be turning to you ladies for support. Right now I try to live day by day and (to quote Eliza from HAMILTON) “look around at how lucky we are to be alive right now.” (It helps that I had a near-death experience in July that reminded me that none of us know how much time we have, so I gave up the story that PCa “robbed” me of my future with my hubby.)

I will offer one thing to consider that could help your hubby’s SEs. Mine started with zytiga plus digarelix, then after the first month they switched the digarelix to a 3-month shot of lupron. That had worse SEs on him, particularly brain fog. He switched back to D and those side effects went away. I don’t know if that might help him any.

What does TBH mean?

Tub111 profile image
Tub111 in reply to

To be honest

It took me a while to get some of these as well 😳

in reply to Tub111

Thank you!!!... 🙂

Oh Connie, so sorry to hear this. It sounds pretty aggressive so it's not clear whether earlier chemo would have made a difference. You should be able to consult with someone at MD Anderson and stay with your oncologist at Methodist. Mets in the liver is tough - and we haven't been there yet so I've got no specific advice.

Take care of yourself -- give you a little time too, and really take it one day at a time. Do things you both enjoy, and enjoy the day. I know that's really hard but it's also really worth it when you can manage it.

Hugs,

Brenda

in reply to Caring7

Many thanks Brenda... Do you think the taxotere can kill the cancer? They are going to scan him after the third treatment to see if the chemo is working.

in reply to Caring7

BTW - the cancer in the liver is adenocarcinoma. The doctor thought it was going to be small cell... which is harder to treat.

Hi Connie

hope things are looking up. Third chemo seems early for a scan but maybe they can see some progress. That is what chemo is supposed to do.

We are on the cusp, not there yet, of deciding whether to do 2nd round of chemo (3 years after the first) - there seems to be some lymphatic advancement and some other tumors growing. We're going to go get one of them soon and see what it is but 2019 is looking a little unsure. Sigh. Still - we've had 5 years, much better years than we thought they would be, from diagnosis.

Take care, and take time for you,

B

in reply to Caring7

Hello Brenda,

Thanks for checking on us. I think the doctor wants to scan after third treatment so he can decide if treatment needs to be adjusted. If the spots on the liver are stable or decreasing in size, he will continue chemo. If they have grown... i assume he will change the treatment. Did not get a clear picture of this...

Hope things go well for you guys. Please let me know if you guys will start chemo. Also, which chemo did your husband have 3 years ago? Will he have the same chemo this year?

I am having a very hard time with all of this... i am unemployed... so, i have too much time to think! The last month has been really tough!

Great to hear from you! Take care!

Connie

Hi Connie,

I am new to this group too. My hubby's dx was last May, stage IV with aggressive bone mets all over his body. The oncologist stated him on Taxotere, Xgeva, Firmagon along with the prednisone. He has chemo every 3 weeks ( so far 12 treatments) and the injections every 4 weeks. He has tolerated the chemo fairly well but he has also become very emotional and suffered all the side effects of the injections, hot flashes, crying, moodiness, shortness of breath and overwhelming fatigue. He has also had lots of problems suffering panic attacks and depression. Coming from a man that was always happy and social, it is tough getting used to this new normal.

I try to take some time every day to just regain my calm. That may be just sitting outside for a few minutes and having a cup of coffee or reading, or meeting a friend for lunch, depending on how close to home I need to be for him.

I think it will be helpful to have this forum to talk with others who are on this same path.

Terry

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