My dad had a surprisingly good doc visit today with our small town oncologist. I had talked with the nurse manager there last week and been told that they had no options left for my dad. Well, today the doc gave us an overview of Xofigo, Provenge, and chemo, and told my dad to start taking Xtandi again, at a lower dose (he’d been taking 4 tablets daily, with some balance issues). Hmmm maybe the nurse mgr was just having a super bad day? Or maybe she’s concerned about his stamina for these treatments? Regardless, I’ve reached out to Duke for an appointment, but meantime, I am certainly glad to know we aren’t in a total treatment desert! The next thing from this local doc will be finding out about possibly getting a lung biopsy (in a larger town nearby).
My dad’s biggest complaint is fatigue/ feeling “washed out” despite sleeping a lot. I wonder if he might have sleep apnea...I know he’s a snorer. Asked his wife if he seemed to sleep soundly, and she said yes. So, anybody got tips on ways to maximize energy levels? Thank you!
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Sea5
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Howdy Sea5. I've been on Lupron for almost 6 years and on added Xtandi for almost 3 years. I'm 71 years old now, and I, too, have considerable fatigue and lack of peak energy and physical capacity since being on Xtandi. I still get awakened a few times each night by hot flashes. I seem to do better when I do manage to get some good REM sleep later into the night or the very early morning. Sometimes I feel better after taking a walk in the cool of the morning. I don't begrudge a short nap during the heat of the day. I can't/won't do the heavier yard work anymore, but "keeping moving" seems to work sometimes. Last year I transitioned the heavier work to others who are younger and more capable. I don't get particularly unsteady while on Xtandi, but I've heard of reports of some men who do, and who have fallen. This can be disproportionately dangerous. It's become almost second nature for me now when I get out of bed or off the couch to first sit up, then wait to stabilize for a moment, then to deliberately stand up, and again stabilize, ... before taking my first few steps. It's not the same as before, but the drug is still working to do it's thing, and I'm still looking at the right side of the daisies!
Thanks for your message! It’s great to hear that you’ve found routines and adjustments that are working well for you...and that your medicines are, too! I think you’re right that maintaining momentum is good! The fatigue issue has really been hounding my dad and I hope he will be able to find an optimal rhythm for his activities as you have. Life feels a lot harder when good rest is so elusive!
Hi again, Sea5. Yes, your Dad's rhythm of activities will likely keep adjusting. If he's like me or some other men I've met, there can be a psychological and emotional aspect of it, too. For some men, there is a real sense of Loss at the perceived or evident losses of former capabilities and endurance. It can take some time to acknowledge those feelings, and to go through whatever processing of anger, sadness, sense of loss, etc. comes along with it. Sometimes it can be as much Symbolic and related to Self Image as anything else. For some it may be the realization that they just can no longer do that aspect of a job that they used to work before. For others it may be realizing that they can't mow that lawn or chop that wood or shovel that snow or hang up those holiday lights the way they did before. Sure, all these can be diminished by natural aging, but having advanced prostate cancer and being on the drugs/treatments with the side effects can bring those changes right up-front in one's life, on top of any worrying about the disease, itself. Allowing him the Compassion and emotional space to express and deal with such emotions can help. Sometimes, getting into a Support Group to talk with his peers might help, too. (Some other very active men can actually really thrive and remain pretty much the same golf/gym/bike guys they've always been. It's highly individual.)
Personally, I've come to view the broad brush look at the life of a typical American male who was born in the middle of the 20th Century as a kind of balanced continuum. We start out as totally dependent and helpless infants who are incapable of almost everything and who only live because of the love and care of others. As we aged we were socialized as males to become more and more independent and capable and accomplished in many ways (even though we were still implicitly interconnected with thousands of others who made our lives and accomplishments possible). At the end of life, or with advanced illness, we return to what we already knew, but have often forgotten. We become less capable of "doing" things, and less "independent", and that's OK to be sad about, and to grieve over as it happens. If we are lucky, we can still hope to be surrounded by love and compassion and support until we again can do very little on our own, and eventually meet our mortal ends. The potential for a good and meaningful life can be there at the beginning, the middle, and at the end.
(Big Hugs have their healing benefits, too. We may not be Cured of our disease, but we can be Healed in many ways.)
Thanks so much for sharing your thoughts! Very perceptive and I’ll be rereading/contemplating them. I am so appreciative of the info, insights and support here!
Very nice thoughts. Considering the 100 billion who have passed already, I guess I shouldn't complain to loudly. I was not a Shakespeare nor a Jack the Ripper. Just me. There were those I loved, and those who loved me. Together, we were a ripple on the pond of life. On the other hand, right now, I have left over tri tip, the cats are eyeing me, "where's supper", and I am awaiting a call from my brother where we will talk for hours about crap I won't even remember tomorrow. Life is good. Enjoy.
Androgen deprivation causes tiredness. As I understand it, testosterone is important for our mitochondria to continue moving energy from food into the molecules that carry that energy to our muscles. The one thing that is known to help is exercise.
I don't know if your dad is trying to exercise or not. If not, I recommend that he try it. One exercise that I know men have used successfully is just walking. Even walking in place in front of a TV set might help. He might start with a couple of five minute walks every day and build up steadily from there.
Maybe he can't do it. Maybe it won't work for him. Maybe he's already tried it and it didn't seem to help. It won't work right away. It will probably take several weeks before he feels a significant effect. But it's worth a try. It's the kind of thing that, if you can do it, it's good for everything that ails you.
HI Alan and thanks for the reply and good ideas! I think my dad would agree with you regarding the power of consistent exercise. Today he was happy that he could do one push-up! He’s always liked walking and light calisthenics; I guess the ADT is likely the culprit here. Think the doc is going to check thyroid, too. Something that I didn’t mention in my post is that last week he was in the hospital for a couple of days (hypercalcemia from eating too many Tums!) and someone told me today, allow 5 days of recovery for every one day spent in the hospital?! Sleep deprivation sure is a real side effect of hospitalization. I’ll encourage him to try to keep moving!
I had this problem with xtandi. My research doctor said my iron was low. I am now on 150 Forte iron supplement. It doesn't turn me into superman but i am able to function normally.
If he snores it is very likely that he has sleep apnea. If he does then fixing this will help his health in many ways. I had to push my husband to get a sleep study done and it was only after his doctors pushed him to that he did it. He has a bipap now and sleeps a lot better. I think it has been a critical part of his healing.
He also no longer falls asleep mid sentence when we have talks. He has a lot more energy.
Take him to a big city if you need to for a sleep study. Some sleep studies will try them out on a bipap/cpap during part of the study.
I have seen these devices change peoples lives.
Healthy eating can really help change energy levels. I think most people don't eat enough fruits and vegetables at the most simple level getting in more of those helps.(Soups maybe.. throwing in some fruit in morning oatmeal) My husband is still juicing.. he juices carrots, celery, beets, ginger and turmeric. He also has fruit smoothies at breakfast in the morning.
Ginseng is something to try.. also I will make my husband cordyceps and lions mane elixirs from Four Sigmatic.(Orivida has wonderful mushroom supplements too.. probably better than Four sigmatic)
If you make a visit to a big city perhaps visit with a good integrative doctor. He can help in many ways.
(Blood Builder as an iron supplement was recommended to one of my older boys by our integrative family doc.. just an FYI and as a possible one to try if you are concerned about anemia )
SO much good info in your message....thank you for reaching out! I think
I will have a conversation with dad’s GP regarding a possible sleep study. My mom had a cpap years ago and I think the devices are more streamlined/less uncomfortable now? And as a vegetarian I totally agree with the importance of healthy diet, esp fruits/veggies...a smoothie is on my lunch menu today! Also I’ve been curious for myself about the mushrooms you mentioned, your message is a good prompt to do some more research. Thank you so very much for sharing these ideas with me!
It took my husband a couple of times to get a bi-pap mask that worked well for him. The devices are wonderful these days. They are very quiet.. his must have some kind of cell service because it uploads all his data to the place where he got it. They call him if it seems like he is having problems.(I did not have to connect it to our wi-fi either) Also his bi-pap has a place for water so that he can breath in moist air. The designs on them are really great.
Only ask questions to the DR, miss have a mo an ro in a small practice in nc. Part of a large hospital group,the best,I am still here after7 years an going
Hi Mathes...yes, definitely a lesson learned about getting my questions directly to the doctor! I love hearing that you’re cruising on toward year 8...that’s wonderful!
Make sure your dad is drinking enough water. Being dehydrated can make you lethargic and tired. If he can walk activity can create energy. Got to keep the body moving! Faith
Hi Faith, thanks for the prompt to encourage him to hydrate, hydrate, hydrate! He is walking in the house, and trying to crank out at least one push-up and sit-up each day. I agree, maintaining momentum is important!
First , post his profile so we know his situation , second, get him into the habit of exercise daily . It will increase his energy and help save his bones, muscles and psyche! If he’s breathing through his mouth and snoring have him go to a sleep lab to test for sleep apnea. That can be another reason for fatigue.
I had a washed out feeling until my PCP corrected my hypothroidism through the drug Levothyroxine (aka "synthroid") now I am feeling normal. I assume your physician is closely monitoring his thryroid?
My Lupron has also affected my iron level which I understand is typical. I am on 150 mg. Poly-iron AM and PM.
The B12 level also needs to be closely monitored. Keith Block, MD advises a B12 supplement but not a big dose. Cancer likes B12 he says, so you only need a small dose to get the job done. Block has a good book on integrative oncology. He heads up the Block Center for Integrative Oncology Care in Illinois.
Wow that is so interesting (and a bit alarming!) about the B12...thanks, CalBear! Thyroid....my dad told me that he received a different generic the last time he refilled his thyroid medicine. I hear that can be problematic so we’ve alerted the doc. Hope my dad will be successful as you were in hitting the sweet spot with the medicine! I’m going to look up Block...I like the integrative approach. Thanks for all this info!
I agree with the great suggestions given here by others. Alwasy good to check for sleep apnea, hypothyroid, B12 deficiency and iron levels as these are very common causes of fatigue. Execp for sleep apnea, the others can be easily be checked with a blood test. Sleep apnea is checked for with a sleep study, or often a home monitoring device can be used for diagnosis. Other signs are snoring, headache, or fatigue (especially mental) in the morning that is better later in the day and falling asleep while doing passive activities. Personally, I think it is best to test for B12 and iron deficiency before giving these supplements as cancer needs both of them for growth. An iron panel with ferritin, TIBC and % saturation give a good read on iron status. After reviewing many serum B12 tests, I find that a test called urinary MMA is a much better marker for B12 status, it is more sensitive and I see B12 serum test normal even when a CBC and MMA indicate a deficiency. Lastly, there has been some discussion on this forum about a liquid supplement called BIRM (do a forum search). My husband responded very well to it with markedly increased energy levels. We decided to try it after reading the positive results of others. But I would check for underlying issues other than ADT fatigue before BIRM.
Shanti, thanks so much! My dad is on supplemental iron and B12 so I’m glad to be learning more about them today...and also BIRM. Hoping to get my dad situated with a new primary care doc and then a sleep study. Can you tell me more about the home monitoring device that could be used for diagnosis?
I can’t say it too much...i’m beyond grateful for all i’m learning from this community!
We have not personally used the home monitoring device but they are available by a docs prescription for home use for diagnostic purposes. Here is some more detail: hopkinsmedicine.org/health/....
An 'in lab' sleep study or prescribed home test is best, but you can get an oxygen/heart-rate/activity tracker on line that will monitor these metrics all night and then plot them for you on a graph. We purchased this one when it was about $100 cheaper: amazon.com/gp/product/B01N6... and were very happy with it. You can also set it to vibrate and wake you up if oxygen saturation drops below the metric you set it at. Neither my husband or I have sleep apnea, we got it as a novelty. Again, offical diagnostic techniques are best, home oxpulse monitor should be used at your discretion.
Thanks for the info Shanti! The things available with current technology are pretty amazing! I floated the idea of a sleep study by my dad’s oncologist and he was supportive. They can do it at the local hospital, so I hope it will happen soon.
All is perfect advice. I found that pain control and diet results in much improved sleep. I believe our bodies now need more sleep to heal. Total loss of strength seems regular and fighting it through forced daily exercise is a must.
CBD helps both my pain and sleep. Lifestyle food change, heart healthy, Mediterranean, Vegetarian, no meat, no added sugar, no dairy, no wheat, smaller servings, whatever, also seems to help the lethargy.
I found sound sleep to be far more important than most anything. It just required finding the right consistent mix of such things that are useful for ME to get sleep my body really needs now.
Keep doing any activity that gets him up and out to enjoy whatever nature is providing each day.
I found that Alkaline Therapy helps ME feel better near the end of each cycle and I know it helped MY PSA.
When standard of care has run its inevitable course then for SOME certain alternative methods may be worth a try if they improve his quality of life.
Thank you 2dee. I totally agree....healthy diet, good and ample sleep, exercise, time in nature....all are so important. And I do think that integrative/alternative medicine has much to offer. I’m going to look up Alkaline Therapy...all I currently know about that is that I once guzzled lots of alkaline water when I had a bout of reflux! I am glad that you’ve found the things that work for you and appreciate your sharing!
You have seen my PERSONAL experience with Alkaline Therapy touted in many posts on our site. Yes I did some "research" (WEB and books), before including the treatment in my daily regimen. When I was being Dx in early 2018 I wanted some treatment to get started fighting my 1303 PSA before the SOC kicked in. Seemed to me that the medical system wasn't as concerned about getting MY treatment started.
MY Alkaline Theray(AT) that I have evolved down to 10 days a month will continue for me. Docs say no harm, not really interested in personal success if not through their Standard Of Care (SOC).
I started the first 12 days with what I though were meaningful results since I hadn't done anything else first. Did PSA test before and after showed a drop from 1303 (and climbing a point a day) down to 362 in 12 days. While 362 is by no means low MINE dropped by over 70% in just 12 days!! While not scientific that was VERY meaningful for me. Your mileage may vary if you consider such an alternative therapy course. I also changed diet but a few days of eating rabbit food won't kill my PCa.
Started Bicalumide and Lupron just at the end of my test so no way to confirm what unique treatment worked after that test or perhaps it has to be all of them together is more likely to reduce my Stage4, fully metastacized, PCa.
The goofy but somewhat logical to a 76yr old guy from California is that a voracious PCa loves sugar in some form first and doesn't like an alkaline environment. The possibly flawed logic I found on the web was that some AT methods gave the PCa just the sugar it desperately grabbed for sustineance, when it was the hungriest, but with the hidden infusion of some Baking Soda to sneak a weak cancer growth environment into the mix to slow it down. Timing of the treatment is paramount to success I feel. My first cycles were abt 10 days on and 10 days off. Some months later after fiddling about with strength, dosage, and schedule I am currently doing 10 days a month on. I read somewhere you shouldn't stay on for more than 14 days? That suggests that a cycle of on and off is the only choice.
I'm NOT trying to make my body more alkaline or anything like that. Just trying another method of attacking the PCa by making its environment more hostile without doing more harm to me. Not a doc or scientist. Not selling anything. Just telling MY PERSONAL experience because I feel it is helping ME. Do your own research. Judge for your self what you are willing to try to combat this insidious disease. We are way past the prevention phase and well into the treatment phase. But do something. When the SOC is that you die painfully with best efforts we tend to consider alternative methods of treatment.
Fascinating! And absolutely wonderful that it has been such a good factor in your treatment plan! I’ll look around on the site, am curious to learn more. Thank you for sharing your story!
Back in March and April my fatigue increased greatly. I had become so weak I was having problems with using walking as an exercise. Some days I didn't want to get out of bed. One of the doctors on my MDA team asked to have my cortisol level checked and it was found to be extremely low. To combat the fatigue Hydrocortisone (for the low cortisol) and Methylphenidate (Ritalin) were prescribed for me and they have helped greatly with the fatigue. No problem at all now walking.
Thank you so much for sharing this, Monty! I will definitely ask dad’s doc if he has checked his cortisol. I’m really happy to hear that you have had such improvement! (And I love the pic of that black kitty!)
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