Extremely tiredness : My Dad had... - Advanced Prostate...

Advanced Prostate Cancer

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Extremely tiredness

Simonapo profile image
43 Replies

My Dad had another small PSA increase from 0.029 to 0.031. He has two small spots on L2 and T8. He finished Provenge 2 months ago. Recently he started experiencing extremely tiredness, he is walking very slowly and can’t do many of the activities he used to. I never seen my dad crying before but now he tears many days telling me that he doesn’t feel well and can’t do anything. Is this tiredness caused by 3.5 years of Abi, Prednisone and Lupron? He has been taking this same treatment all this time and never complained about any side effects ever. Why all of the sudden such a severe tiredness and mobility issues? Or is it caused by the two new spots on his spine? Are there any pills that he can take to help him have more energy and a better life? Any advice is greatly appreciated. Thank you so much.

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Simonapo
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43 Replies
GP24 profile image
GP24

Fatigue, depression and muscle loss are common side effects. I am sorry to say that but exercise is much better than any drugs.

Simonapo profile image
Simonapo in reply toGP24

Thank you, agree, he is trying to exercise as much as he can, that helps for sure. Thank you again.

Kaliber profile image
Kaliber

I’m in the same boat …. 6.25 years of lupron - xtandi and I could barely lift my head sometimes. Way too tired , too sleepy, too exhausted. Started sleeping 16-18 hours a day.

My oncologist put me on an estrogen transdermal patch and it perked me up considerably. You could say dramatically even. Estrogen can be hard to get from a lot of doctors …..mine included. But after I was about to enter a narcoleptic trance they figured “ what could it hurt ? “ . Like everything else in our aPCa 4b world , estrogen has negative things as well , even bigger boobs, more “ additional weight gain ( than even ADT ) , moody, extremely sore / painful touch sensitivity to nipples, more. This is something to give some thought and talk it over with your oncologist/ palliative care team. For me it is well worth it ….. being awake / alert is a blessing.

❤️❤️❤️

Simonapo profile image
Simonapo in reply toKaliber

Thanh you so much for your reply, sorry you had to go through same issues, glad to hear that estrogen made a difference, I will inquire about it. Thank you again.

Kaliber profile image
Kaliber in reply toSimonapo

Estrogen made a mild / modest improvement in me, other guys on here rave about using it and get much better results than I’m getting. They are taking larger daily amounts than I am as well. It’ll all depend upon your particular doctors .

You are a great advocate for your father , he is lucky to have you in there helping him.

❤️❤️❤️

Simonapo profile image
Simonapo in reply toKaliber

Thank you so much ❤️

Lettuce231 profile image
Lettuce231

Hello, I've just read up about your dad, I see that he is about 4 years into the treatment. I'm just wondering if he is at a point many of us reach, before we pick back up again. Unfortunately the symptoms you describe are not uncommon, is he at his lowest point just before his Lupron jab ? For me, even now I fade rapidly about a week before I am due the jab.

Gentle exercise to begin with is always good for the head, a walk in the fresh air, then gradually the stamina will increase.

I hope he picks up, his PSA is still very low.

I wish you well.

Kaliber profile image
Kaliber in reply toLettuce231

Yes , imho, nice addition. Definitely an important aspect to consider as well.

❤️❤️❤️

Lettuce231 profile image
Lettuce231 in reply toKaliber

Thanks 👍

Kaliber profile image
Kaliber in reply toLettuce231

👍

Doctorsceptic profile image
Doctorsceptic

I am sorry to hear of his problems. There is a wide differential diagnosis here and his symptoms may or may not be related to PCa. A full assessment is needed.

Has a doctor taken a fresh history from him about the recent deterioration and undertaken a full physical examination including neurological exam and cognitive tests? If not these should be done.

Has he had basic blood checks done? These include liver function, full blood count, renal function, CK (muscle enzyme), thyroid function (TSH) for under active thyroid, HbA1c and fasting blood glucose, urine check for proteinuria.

Next, has the possibility of a depressive illness or early dementia been considered? Depending on the initial assessment, his doctor(s) may need to undertake a mental and cognitive health examination.

I hope this helps to get you started.

Simonapo profile image
Simonapo in reply toDoctorsceptic

Thank you so much, all these are great points, we are having a full examination appointment tomorrow. Thank you again.

NecessarilySo profile image
NecessarilySo

Shows that even on Lupron, a small PSA can be accompanied by metastases. I had a spine met for years that I eliminated with heat while on Lupron and lycopene, also PSA <0.06. Apply very hot shower to the pain spots, and try heat pad. Also tomato juice frequently. As for energy, I drink coffee.

85745 profile image
85745 in reply toNecessarilySo

That's very interesting about hot shower or heat pad , I do the same thing and it calms down the pain. I read heat can kill cancer cells.

Simonapo profile image
Simonapo in reply toNecessarilySo

Thank you so much.

London441 profile image
London441

Sorry to hear. Fatigue is the most common side effect of these drugs, particularly Lupron and others of its class. Exercise is indeed the best remedy, but of course the trick is to overcome the overwhelming need to sleep and sit. Also accompanying depression, for which there are some options for of course.

Exercise is truly the medicine for this though. Like so many challenges, testosterone suppression side effects are best met by going straight at them with exactly what we want least to do.

However, the turnaround can be stunning. Even a little goes a long way. A trainer or other professional can really help also, if it’s practical for you. Great luck to you both!

Simonapo profile image
Simonapo in reply toLondon441

Thank you very much, great input, I appreciate it.

Slugger61 profile image
Slugger61

The triple shot of abi, Prednisone and Lupron is a lot for body and mind to handle. 3 years is a long time to be on those meds. The side effects are brutal already they were for me when I was on all 3 for 16 months.

Slugger61 profile image
Slugger61 in reply toSlugger61

Please excuse typos

Simonapo profile image
Simonapo in reply toSlugger61

Agree, harsh treatment

Professorgary profile image
Professorgary

you have not included your dads age which would help me make some suggestions. I notice you are treating the psa and not the symptoms. If he has bone mets he is treatable but not incurable. I like some others treat the symptoms and not the progression. Example, my psa climbed from 1 to 9 in about a year and local oncologist says I need chemo. I still have my prostate intact so my numbers may run a little higher. I feel great, very minimal side effects from adt but I suspect that could be from supplements I take to mitigate the side effects af adt. I won’t risk going from what I have now to possibly chemo induced neuropathy to lower my psa. Now if pain shows up that will be different because pain is a powerfull motivator. What I am saying is that all we can do is manage quality of life as we can do nothing to cure this disease and I am more interested in how well I live not how long I live. I have 3 doctors on my team to treat my cancer, two understand what I am sating and one doesn’t which is why second and third opinions are important. Your father should feel incredibly blessed to have you advocating for him. I pray that you will find the answers to help him live a good life. If you are interested you can research curcumin, berberine, magnesium and gut dysbiosis on prostate cancer treatment as well as how they effect the individual side effects of adt. You can also research how prednisone with abi doesn’t actually fight the cancer and in time can actually fuel the cancer. It purpose is to mitigate the side effects of abi which in most cases can be done with individual drugs. I say most cases because that is what the studies have shown. Forgive me for not using paragraphs, It is just that I know it drives some people crazy and I just can’t help myself. Gos bless.

j-o-h-n profile image
j-o-h-n in reply toProfessorgary

No paragraphs? Oiiii that's driving me crazy....

Good Luck, Good Health and Good Humor.

j-o-h-n

Professorgary profile image
Professorgary in reply toj-o-h-n

Driving you crazy? I think that ship left port long ago.lol God bless.

Simonapo profile image
Simonapo in reply toProfessorgary

No, not at all, thank you for all the info, I really appreciate it God Bless🙏

j-o-h-n profile image
j-o-h-n in reply toProfessorgary

Yep on the "Motor Vessel", MV Doña Paz Ferry on December 20, 1987 and definitely could use a God Bless.

Good Luck, Good Health and Good Humor.

j-o-h-n

Simonapo profile image
Simonapo in reply toProfessorgary

Thank you so much for all the info provided. Very helpful, thank you again.

JAMES_BOND007 profile image
JAMES_BOND007

Agree with all the other posts... exercise, rule out things unrelated to PCa. When I was on Lupron, Ritalin helped considerably with mental acuity and motivation to exercise. This was the trial that sent me down that path: clinicaltrials.gov/study/NC...

Simonapo profile image
Simonapo in reply toJAMES_BOND007

Thank you, I will look into Ritalin

pe43 profile image
pe43

You could question the taking of 5 mg prednisone twice a day. The recommended dose for castration-sensitive patients is 5 mg prednisone once a day. See:

dailymed.nlm.nih.gov/dailym...

Simonapo profile image
Simonapo in reply tope43

Thank you, he already is on 5mg Prednisone twice daily.

pe43 profile image
pe43 in reply toSimonapo

Your dad's PSA is very low, so his response to abi and Lupron shows he is castration-sensitive. This means he need take only 5 mg a day of prednisone, according to the information sheet I linked to above.

Simonapo profile image
Simonapo in reply tope43

Thank you for pointing that out, I will discuss it with the doctor.

Professorgary profile image
Professorgary in reply toSimonapo

You may want to research switching to dexamethasone. Prednisone can begin to fuel cancer after a while. My MO just switched me after a second opinion fron Sam Denmeade at JHUH. God bless.

Simonapo profile image
Simonapo in reply toProfessorgary

This is what I was thinking to do, it’s a minor switch from Prednisone to Dexamethasone, but maybe it would help. I heard it’s only helping for short time but I will take anything. Thank you.

Professorgary profile image
Professorgary in reply toSimonapo

Some people get no benefit and some can get quite a bit of benefit. We won’t. Know unless we try. I do feel that the switch may be making it harder for me to fall asleep at night. D has a much longer half life than P.

Simonapo profile image
Simonapo in reply toProfessorgary

Thank you

j-o-h-n profile image
j-o-h-n

My question too...... how old is your dear Dad?

Keep posting!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

Simonapo profile image
Simonapo in reply toj-o-h-n

Hi John, always love your posts, my dear dad is 87.

j-o-h-n profile image
j-o-h-n in reply toSimonapo

I beat him by a year....... both of us Depression and War Time babies.....Give him my best, oops I need my best, he can have my next to best.....( we would have tons to talk about). Regards.

Good Luck, Good Health and Good Humor.

j-o-h-n

Hobierat profile image
Hobierat

Simonspo, I’m also was wondering your fathers age, the bio does not say . I’m soon to be 83 and age and fatigue do add a factor. In my opinion, I fight fatigue by forcing my self to exercise ,do chores, keep moving, it works. Go to a pain doctor if necessary but don’t let him give up.

Simonapo profile image
Simonapo in reply toHobierat

Thank you so much, great advice, my dad is 87, he was diagnosed at 83. Best of luck with everything.

EddieV profile image
EddieV

Has he tried Provigil? It can be a game changer for fatigue.

Simonapo profile image
Simonapo in reply toEddieV

He hasn’t tried it, I will suggest it to the doctor, thank you so much.

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