Hi, my husband seen the family doctor yesterday and he prescribed Ritalin ( not sure yet of the dose as he faxed to pharmacy )My question is if anyone has tried this for energy? He is very nervous about adding more meds. He also is taking Effexor 75mg for the hot flushes which has decreased them . He keeps busy in day and exercises as much as possible. Has Zoledex injection every 3 months and Nubeqa daily. Finished chemo on April 18. The fatigue is brutal for him and he is struggling. Anyone take anything that helps or anyone take Ritilin for this reason? He is open for any suggestions, he is 59 years old and his testosterone is basically none existence the doctor said ( sorry dont have the number ). Thanks for any input
Help with fatigue: Hi, my husband seen... - Advanced Prostate...
Help with fatigue
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How's the blood work ? I think it is important to work with primary care at some point.
I am nearly 56 so close to your husband's age.
I take Concerta (similar to Ritalin but lasts a few hours longer) and I am fairly certain it helped me a little with the brain fog and the fatigue.
However its not a miracle pill. The best "remedy" is to do physical activities and exercises despite the fatigue. It won't make him feel "normal" but it will reduce the fatigue and make his muscles and bones decline less rapidly.
Best of luck.
Thanks very much for the response, it truly is a battle and so very sad to watch . He is struggling with going from strong and very fit , no meds to this. All of you are in the same battle but learning about others and what they think of medications before he starts them is important as we have no specialists to talk to here where we live. His doctor just prescribes a med and carries on his day. Best to you
Diagnosis at age 53 fit, healthy eating and healthy lifestyle.
Within 12 months I went through surgery, radiation and hormone therapy (adt & abiraterone). Just coming up on 3 years from surgery (Sept) and wrapping up 2 years on adt.
Fatigue, muscle loss, brain fog, lack of drive, loss oflibido, loss of strength, loss of endurance, depression, penile atrophy. ADT is ROUGH for me.
It's a rough 3 years but the adt has been the greatest metabolic impact affecting me on SO many levels. Not where I saw myself at 56!
Be well!
I can relate to all of this even though I am 12 years older. I don’t like it, I struggle constantly, and then remember that I can still get up and be vertical. Many of fellow brothers can’t say that.
Hi PT! And congratulations on both being offered and executing triplet therapy against metastatic PCa! This is the most advanced care and there's fantastic clinical studies on it. I'm also in Canada and in my later 60s. And I've been now on triplet therapy for now going on more than 2 years. Very successful so far and PSA is basically undetectable. I try to exercise - that's really really really important.
But yes fatigue. And I'm also on methylphenidate - I prefer the long fancy chemical term to Ritalin because it makes me sound less like a teenager 😂. I think it helps with fatigue. I take one or two a day typically in the earlier part of the day. I don't know if it's related to methylphenidate but 2 months ago I told my wife that I sort of feel normal. She laughed - but in a nice way.
I have my blood work coming up in a scan later in the summer - maybe they haven't told you but PSA actually stands for "permanent state of anxiety" 😂
FYI my triplet therapy was with Docetaxel, Abiraterone and Firmagon/Degarelix - but the underlying model is the same as that of your husband - chemo, ARPI, ADT.
FYI I also try to keep my carbs down. Also I have no hot flashes from the ADT - this is possibly because I stayed on the Firmagon instead of switching to Lupron. The first is a GnRH antagonist and the second is a GnRH agonist. Same end result but via a different approach - and from my reading I prefer to stay on the antagonist.
Anyway seeing as your husband has joined a club that he probably didn't want to join nevertheless he's off to a very good start! A big success for you both ongoing! I hope this note is helpful.
Wow ! I love your attitude and the way you write and think . Thanks so much for the information, so maybe that Zoledex could possibly be switched to firmagon and may help? The only thing is that I think firmagon is only available once a month which he may not like? I will have to research this. So happy to hear that the methylphenidate is helping and he may still give it a try but put the prescription on hold to research some more. Keep up the positive way you think . Bless you
I am certainly not going to recommend for or against a particular ADT. I can only relate my own experience or what I have read.
An ADT GnRH antagonist works very quickly - which was important in my case because I had cancerous masses invading my epidural space in beginning to press on my spinal cord. I was beginning to develop gate problems. I have had a complete recovery, thanks Heaven.
The GnRH agonists on the other hand, such as what your husband is on works in the opposite way by overstimulating "something" and then the somethings get tired and burn out or something - I don't know that's my layperson's explanation.
But in my case we could not risk that approach because there is what you call a testosterone flare at the beginning of the agonist treatment. (The overstimulation part.) And we could not afford any stimulation of masses to my spinal cord.
That's how I ended up on the antagonist Firmagon. And I never experienced hot flashes etc that people complain about on ADT. Which isn't to say that someone on Firmagon wouldn't.
Now there's a reason I'm sharing this with you. Firmagon is as you say once a month. And so after everything stabilized about a year ago I was strongly encouraged to move to a GnRH agonist, in this case the popular Lupron. Because for convenience, only every 90 days! This is a terrible way to make a medical decision.
Of course there are many inconveniences and managing metastatic prostate cancer or any kind of cancer is a big deal. But the decision should not really one based on convenience because the two technologies work differently. I decided to stay on the antagonist. It's less convenient but for me it has worked out fine.
(A separate issue is the skill of the nurse doing the Firmagon injection - this is a big issue - I now have a private nurse who comes every 28 days and I never ever have a bad reaction anymore. I have previously had a low grade fever and slept to 12 or 14 hours. But even that seems to be diminishing now. And it's a small price to pay. And as I said before, I don't get any hot flashes or other symptoms that I am aware of.)
BTW I see someone has mentioned transdermal estrogen patches. This is something I'm very interested in and I have researched very thoroughly. It is an intriguing idea in multiple ways. My medical oncologists absolutely refuse to do it. I can give you a very good argument why it is a good idea but it is not fully understood. So for now I'm not doing it. Very few people are doing it apparently, except off the books.
”…but 2 months ago I told my wife that I sort of feel normal”.
John, this made me happy to read 👍
Many of the bad side effects of Lupron are not obvious: osteoporosis, increased blood glucose, increased cholesterol, worse lipid levels, and increased risk of CVE's.
Transdermal estrogen is very effective at two levels. At a low dose, it effectively treats hot flashes and osteoporosis. At high doses, it is as effective as Lupron at reducing testosterone to castrate levels.
I'm currently taking compounded 1% estradiol gel from a compounding pharmacy, prescribed by my PCP. My MO won't prescribe it, but she won't prevent me from taking it.
The Phase-III results of the UK PATCH study (10-year survival data) will be published this Fall. Stay tuned!
Super interesting JB. You mentioned the difference between low dose and high dose estradiol - a very important distinction. I'm not interested in changing my therapy regime - but I'm interested in low dose to reduce the side effects of any ADT.
Low dose would be 1 large estradiol patch per week , 0.1 mg of E2 every 24 hours is the absorbed dose. Your PCP or MO should not object to taking this to simply relieve hot flashes. Low dose TE2 is called "estrogen add-back or addback". Your target serum estradiol should be 100-150 pg/ml. The high dose that was used in the 15-yr UK PATCH study is 300-400 pg/ml and they use it to replace Lupron ADT.
Bob
Would like to know where one can buy E2 gel? thanks
There are two estradiol gel manufacturers in the US: Vivigel and Estrogel. You can Google them.
I got my PCP to prescribe compounded estradiol gel, 1% concentration of E2. That last a10times longer than the low concentrations of E2 used in Vivigel (0.1% E2) or Estrogel (0.06% E2). You can ask your local compounding pharmacist for a list of local doctors that prescribe compounded hormones. That way they don't have to recommend a favorite doc (they don't want to be accused of favoritism). Your MO may also write a prescription for low-dose estradiol gel or patch, for treating hot flashes and osteoporosis, just so long as you continue doing their program (e.g., Lupron).
Bob
As to the esradiol patches, I told my oncologist that I would be getting estrogen soon or I would soon have a different doctor. It didn't take long for him to change his mind, and we still get along very well. Instead of patches, I inject a small amount every 2 weeks.
After getting a botched RARP and having the previous urologist/surgeon try to make it seem I had a mental problem, I realized I needed to stand up to my doctors. It is YOUR life, not theirs!
John, I like your writing. Re low-dose estrogen, I take it as a trans-dermal gel (1%). My MO agreed to it after I shared with him a paper or two regarding its efficacy. I take it primarily to help with bone health after discontinuing monthly Zometa (bisphosphonate) infusions due to diagnosis of ONJ. I don't take it every day as my estradiol level appeared to go up too high, at least by today's standards. So I opt for every other day (if I remember). I can't say for certain that it has diminished negative ADT side effects ( I take Orgovyx (relugolix) and Nubeqa (darolutamide)). Prices vary considerably (I'm in the US), depending on insurance and pharmacy. Good luck to you!
This is fantastic FG. I really appreciate your note - and thanks to your note and a few other notes in the last couple of days I have decided to return to my pursuit of estradiol patches - which I had kind of given up on for the last 3 months.
Thanks John. Just a clarification: my low-dose estradiol gel is 0.1% (not 1% as I misspoke above). Also, this abstract may be of help in stating your case:
pubmed.ncbi.nlm.nih.gov/356...
This is fantastic. I haven't come across this morning before. Actual real clinical evidence. There's another article on the same collection of references on a similar topic but in relation to the effect of Estradiol on fat, again in the absence of testosterone.
However in this case I'm contrary to their hypothesis apparently fatness increases! (Maybe they're not exercising hard enough and maybe they're not paying attention to metabolic issues, like eating too much carbohydrates 😀)
Thanks for the clarification on E2 concentration. 0.1% E2 is the E2 concentration for Vivigel. Estrogel gel is 0.06% E2. I was able to convince my PCP to prescribe 1.0% E2 concentration in a compounded gel formulation. That makes it 10X cheaper than the traditional 0.1% concentration of gel. It's less than $10/month for high-dose tE2 therapy. I will be starting estrogen ADT in a week or so.
Bob
Hi Bob, just to clariy, my estradiol gel (0.1%) is distributed by Xiromed and manufatured in Spain by Laboratorios Leon Farma, SA.
Ahh... you're in Spain. Cool ! (Hot?)
I wonder if Leon Farma or Xiromed would ship to the USA?
If you don't mind me asking, how did you convince your doctor to prescribe transdermal estradiol? And, which doctor is prescribing it: GP, MO, RP, Urologist?
Bob in New Mexico
No, I'm actually in the US (Colo). I got the prescription filled at Walgreens (I think) ordered by my MO. As I mentioned above, I sent my MO one or 2 papers confirming its efficacy.
I get it now. You got your gel from Walgreens, but they got it from Spain.
So many men have trouble getting a prescription for estradiol...
You may look at this discussion about Ritalin: healthunlocked.com/advanced...
Wouldn't it be better to try to use for example transdermal estrogen patches for the hot flashes? Though if he's been on Effexor for a long time then he would have to have a long-time taper and probably consult that with the doctor. Read please discussion about hot flashes: healthunlocked.com/advanced...
Thanks will look into this more !
On TallAllen's blog you can read more about managing ADT side effects: prostatecancer.news/2023/04...
Excerpts:
"VII. Managing Other ADT Side Effects
It may be possible to at least manage some of the most annoying ADT side effects without resorting to iADT [intermittent androgen deprivation therapy = occassional vacations] . Here are interventions that can be used now or on the horizon for some of the common side effects of ADT. Each patient must determine for himself the balance between interventions and risk of the side effects.
1. Fatigue
The small randomized EXTEND trial at Duke [1] last year reported that men who undertook a supervised program of aerobics and weight training before and during hormone therapy were able to significantly improve their fatigue scores and quality of life relative to men who did not take the program. Similar programs have been found to combat fatigue in small randomized trials in Australia (see this link and this one), and the UK,
There is a Phase 3 trial of Exercise and Methylphenidate (Ritalin) at MD Anderson with results expected by Nov. 2023.
Stopping smoking and restricting alcohol use may be beneficial.
Weight-bearing exercise may be contraindicated in men with multiple bone metastases due to risk of fracture. Cardiovascular morbidity may preclude aerobic exercise in some men. One should always check with one's doctors before beginning an exercise regime."
...
"7. Hot Flashes
The following are good, albeit imperfect, solutions for hot flashes: aural acupuncture, estrogen patches, Progesterones (Megace or Provera), venlafaxine (Effexor), and oxybutynin."
Underlined words have links to sources in the original blog post.
Cyproterone Acetate cured my hot flushes, but I think it is prescription only.
For hot flashes, I think the least toxic way to solve them is through the daily intake of Norwegian Kelp initially and then just once in a while once the hot flashes are under control.
I've done the Norwegian Kelp while on ADT, my menopausal wife has done it and my sister who is also menopausal has done it too. For each of us, it only took between 2 to 4 days for the hot flashes to go away.
A box of Norwegian Kelp pills that should last you several month is less than $20 on Amazon. Might be cheaper elsewhere.
I believe it is the seaweed’s iodine content that may indirectly support thyroid function, which influences the hormonal regulation that are thrown out of whack by ADT or by menopause.
Health Benefits:
Iodine: Kelp is particularly high in iodine, which plays a crucial role in thyroid function. Adequate iodine levels are essential for maintaining hormonal balance.
Calcium: Some seaweed supplements, including Norwegian kelp, are included in treatment plans for osteoarthritis due to their calcium content.
Vitamin B-12: Essential for cognitive and bodily functions, vitamin B-12 is scarce in plant-based foods, but seaweed provides a source.
Detoxification: The oils in seaweed help detoxify the body and promote the renewal of damaged skin cells
Hope this helps!
This is why I love this site, you are so very smart and the information is so important to everyone, thanks
I work out 6 days a week. 4 days heavy lifting and 2 days cardio. I also take supplements to help with muscle building. Fatigue, hot flashes as well as muscle loss are a thing of the past
What supplements are you taking, if you don't mind my asking.
ADT unfortunately begets fatigue. I'm on Prostap and find my energy levels come and go, sometimes I feel almost normal and other times I can barely stand up, having to get up 3-4 times a night doesn't help much.
Blood tests show low red blood cell count and this is common with ADT, it's a consequence of the treatment.
Unfortunately stopping the treatment will get things back to normal, but it will also get things back to normal for any of those pesky cancer cells that have not been zapped by the treatment, and all will be for nothing.
I try to make my body a hostile environment for cancer cells, they are very partial to carbs so I reduce these to a minimum, but exercise is vitally important to keep everything going.
Your muscles are hungry for the amino acid glycogen which they use up during exercise, but this amino acid is also essential for cancer cells to develop. There is a lot of research into disrupting this association as an additional therapy, the important thing is not to replace this AA after exercise with energy drinks or protein shakes etc, just drink water.....this is just my opinion for what it's worth....
Anyway, there are lots of us in the same boat if it makes you feel better, good luck, and remember everything that's happening is for a reason.
Nearly forgot, my consultant prescribed Cyproterone Acetate for hot flushes and they seem to have worked, does anyone else use this?
I’m sorry to hear he is struggling despite his efforts. I hate to see anyone resort to stimulant meds, but that’s not my business.
Exercise is. May I ask what he is doing for exercise more specifically?
During chemo he did the best he could on his strong days, snowshoeing and walking . Since chemo finished on April 18 he continues to try and walk daily , rides a motorbike ( surprisingly works the muscles) . We live remote and are not near a gym, I'm looking at finding some weights he could use. He also is constantly working on various projects , changing car tires, transmission oil change , getting firewood, cleaning property. These things he feels afterwards and knows they are working his muscles. Recently his knees and having great pain, we have purchased knee braces to try as he used one of mine and felt they helped him. His bone scan last October that found the cancer in his bones also showed he had arthritis in both knees. We feel that the treatments he is on have made this worse and this may be why he is feeling pain to knees. He does have some days better than others. He sleeps almost every afternoon , I joke that I could have a party and he would not hear anything. If he is having a busy day and does not nap , he really struggles to stay up past 9:00. He sleeps pretty good most nights except for the peeing. He is consulting next week with a phone call with a urologist and asking about the TURP he never got due to the cancer diagnoses. He hopes this will help with the peeing issues he has had for years. Thanks so much for your reply. The best to you .
Your thoroughness describing his situation is impressive as it so clearly shows your love and concern. Many of us are familiar with the urinary issues affecting sleep. All I can say about that is try everything you can. The TURP may or may not be the answer. Some drugs work well to relax the bladder, sometimes restricting fluids later in the day helps. There are other solutions as well, though all come with trade-offs.
I understand about the challenges of resistance training with no gym access. There are very effective alternatives of course. If you can get the weights great. Bands work. Calisthenics work. I started the same 3 treatments as your husband just as Covid hit in 2020, so no gyms available. I was able to buy only a few weights-they were as hard to find as toilet paper. I worked out in my basement daily until the lockdown ended. It was every bit as good as the gym.
It can never be emphasized too much-Weights/resistance training is THE most effective antidote to ADT fatigue by far. The walking, motorbike and the home projects are all great, but these drugs waste muscle relentlessly, and we must intervene specifically for best results. Those of us who do, whether in a gym or at home, have the least issues with fatigue-guaranteed.
Great luck to you!
He has tried flowmax and another similar drug for the peeing in the past but unfortunately he has VERY low blood pressure and was having huge issues with fait/light deadness that could not be resolved. Also it did not seem to help with the peeing. He is everything to me and without him there is no anything , sad fact but true story. Almost 30 years of bairly a day apart .
My father battled HARD and STRONG for 17 years. He was active up until the end and relied on medical marijuana gummies in the last 5 years for pain, appetite, and fatigue. We live in Michigan so it was easy to go to the dispensary and they were hepful.
He spent as much time outside in fresh air and sunshine.
Exercised as much as possible.
And took 1/3 to 1/2 of a 10 mg gummy that was a combo of THC and CBN to "negate" the psychoactive properties of the THC.
He was never "high" except for the one day that he took his own dose and took the whole gummy lol. Then he was "fun" and a little goofy...
He never agreed to chemo, but said yes to MANY other treaments. But also never took pain meds.
The gummy's helped him VERY much.
He lived to 88...a very full life.
Hope this helps.
Prayers for all of your healing and strength.
Dawn
instead of another pill, especially Ritalin, maybe look at a couple things. First the Effexor could be causing some fatigue. Try a different time of day in taking it, or switch to like megesterol. Look at diet. With his exercise he should be getting like 1 gram of protein per kg of body weight. Try a protein nutritional drink daily. This was recommended by our chemo doc. We use a plant based unflavored protein powder. I add spinach, tablespoon chia seed, local raw honey, parsley, a cup of mixed red blue frozen berries ( Walmart). Blend with water or almond milk. I also add a couple squirts of like a MIO drink enhancer oh forgot I make my own broccoli sprouts and add. If he is on adt, that affects muscle, less muscle increases fatigue. This gives you around 22+ grams protein. Chia seed can be sprinkled on anything too. Look at the Mediterranean type protocol, especially increased fish etc. Best wishes.
I have looked up megesterol before and was unsure to mention this as I seen it was used to treat people with anorexia or weight loss ( promotes eating and weight gain ) so was scared he would gain more weight as he struggles with how hungry he has become on the treatments and has gained weight. Do you find it increased your weight or made you more hungry? We both love to fish so fish is a huge part of our diet. I put chia and hemp seeds in his greek yogurt at breakfast . I have been using spinach in my meals more often also and he is currently taking the Effexor in the evening. Curious if you could let me know about the megesterol. Thanks so much , and god bless you
Yes very effective for fatigue and brain fog, it works good spread out through the morning and early afternoon. My oncologist frequently prescribed it for cancer fatigue in his patients. It’s like a really good cup of coffee. I also use estradiol patches for hot flashes and bone health but they do little for fatigue.
Ed
Hey, they considered putting me on ritalin but then decided against it, cant remember why. Instead they put me on dexamethazone 5mg. It helped for a few months which may be all he needs as he recovers from the effects of chemo.
Thanks for the reply, his doctor does not think it will improve with time because he says the fatigue is from having no testosterone which will be a forever thing. I still think he is feeling the chemo affects, he certainly went through the most aggressive treatment possible starting Zoladex and Nubeqa and chemo together . I can't see that anyone would be running marathons afterwards. It is startling and so sad for me to watch the love of my life change before my eyes. He has no hair on his body any where now. Eyes still water and slight neuropathy that we hope fades away. This disease is cruel and nasty . I think he has defiantly decided after much research by me and all the survivors inputs to not take the Ritalin . He hated the dexamethazone during chemo as it kept him awake all night .
Just some positive thinking here (see what I did there 
I did 21 bags of chemo over a few years. I did double chemo, carboplatin/jevtana at the same time as lupron and zytiga. It was brutal so I know what he's going thru. I too was hairless and weak. I know it was very hard on my wife of 35 years, we are both 59 now. Now Ive been on lupron/xtandi/xgeva for like 90 months.
Ya Ive been on this road for a while. However now I go to the gym 3/4 times a week and work out very hard. It seems to have an opposite affect to what you would think, more energy. Plus building or at least maintaining muscle strength is so important. Resistance training mixed with cardio. I know how tired he is, I'm living it, but I'm choosing not to lay down.
Also the Dex that he took during chemo was necessary for that regimen but is different than taking it now for energy. It may help.
Stay strong for him. They train nurses, especially ER, not to react to the condition of an emergency patient. If the patient sees horror or fear in the eyes of the nurse it causes them to react with fear also. Don't let him see that on you. I know its hard, I watch my wife and kids everyday.
Peace, John
Chemo fatigue should get better. It took nearly 6 months after my husband had his last treatment. During chemo, he couldn't finish mowing the lawn or carry luggage up the stairs. It was scary for awhile but it did get better. If his GP hasn't checked his thyroid, that is something else that might make a difference. My suggestion would to give him a few more months to heal from the chemo fatigue before making any changes.
I've been taking Provigil for 2 or 3 years now and it really helps me. It's not as jarring as Ritalin nor does it have the same tendency for psychosis or addiction. (Your husband would have to take a high dose to have a chance at psychosis, I think.)
YMMV and everyone is different but this has helped me.
Taking ritalin is a good mild stimulate. It can mess with blood pressure increasing it.
Start low and slow, 5mg, until you know what it does.
I have been rx 15mg, but only can take 5mg due to increase in BP.
As far as ritalin itself, it is very helpful with fatigue.
Best of luck.
Fatigue I find can be managed by taking Korean Panex Ginseng also take Creatine, Urolithin A, and Astaxanthin, and MSM. All supplements. Also Nattokinase to keep my blood flowing. Good night sleep is important so lot of times I will take Melatonin before bedtime along with my magnesium and Apigenin. Seaweed snacks now and then for Iodine. Vitamin C helps too. Best
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