Can I ask what to expect during the i... - Advanced Prostate...

Advanced Prostate Cancer

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Can I ask what to expect during the initial hormone therapy + five to eight weeks of radiation?

FormulaRob profile image
26 Replies

Hi All,

My father has just completed two weeks of radiation and I thought he was handling it very well but today seemed to be a really bad day. It has me a bit shaken up as it seemed to have come out of no where. Wondering if these symptoms are normal and how much worse we can expect this to get. Along with any suggestions to ease symptoms. Not often you see your father in tears so just seeing what I can do ..

1. Fatigue has been getting worse and worse but this we expected

2. He’s had some seriously intense painful abdominal pain I guess ? The way he explains it is that it feels like something internally is TEARING apart. Not sure if that is the prostate he is feeling or what.. but curious what this is and if this is normal. He has this pain initially before radiation treatment .. once he got the first firmagon shot. So this is possibly a result of hormones ?

3. He’s having tingles in his arms and legs ? He says he feels so week even for walking although he’s been going up and down stairs , shovelling snow etc ..

4. Dizzy and Nauseous? I’m concerned about this too

5. Something I’ve noticed rather than him telling me is random dark red patches of skin on his arms? He could have it other places too but I visually can only see his arms. Weird since radiation isn’t hitting his arms

6. I guess painful urination and harder to pee. I assume this is normal but figured I’d list every symptom so far

Wondering if others here struggled to stay positive during this treatment / what their experience was.

26 Replies
SLIMPICKEN profile image

I did 8 weeks five per week imrt.. I had 1,2,3,4,not 5, but 6. All pretty normal side effects I’m afraid . Just ge5 him through to the other side . Prop him up when he needs it .

FormulaRob profile image
FormulaRob in reply to SLIMPICKEN

Thank you Lulu ! Appreciate your response. Ouch you had to do a full 8 weeks of this !? I hope it didn’t get progressively worse for the entire 8 weeks. Hoping it just tapers off and stays the same at least.

God bless on getting through it.. I’ll be honest hearing 5-8 weeks at the start had me thinking “wow that won’t be that bad to get through”.. we’ll now we’re 2 weeks in and I couldn’t have been more wrong

SLIMPICKEN profile image
SLIMPICKEN in reply to FormulaRob

Keep eating berries and healthy stuff only ..Yah , they fried me up pretty good, the good news is that it kicked the pc n the teeth for a good long time .So that is the best that we can hope for with #4 . Imrt was nothing to me until 3 weeks in . I got chronic fatigue syndrome for about three years from it ,and my urological complications ( uti’s for two years ) which drug me down . We’ve heard that saying” If it doesn’t kill ya , it makes you stronger “ That doesn’t apply to pc treatment . They diminish us Greatly . Stay very hydrated .. and at least walk each day if you can . Some fellows breeze through it , they say ? We trade away many our manly features ( muscle bone cognition stamina and endurance ) in order to live another day . Pc is a trade off if we are to survive it at all for any period of time . Stay strong , rest up afterwards..And recovery takes some time too . But if it all works then it’s worth it . Hang in there ! 💪👍

fireandice123 profile image
fireandice123 in reply to SLIMPICKEN

Is he on Tamsulosin (Flomax) for urinary issues? If so increasing the dosage may help. When I went through RT I had increased difficulties with urination. My RO doubled my tamsulosin dosage and it helped. About 2 weeks after RT was over my dosage was reduced back my pre-RT level and all was back to normal, at least normal for someone with PCa.

FormulaRob profile image
FormulaRob in reply to fireandice123

Hey fireandice,

Yeah he is on flomax, he just picked up another prescription of it BUT I never thought to ask him the dosage. So unsure if they upped the dose or what for him. He just went to bed now so I’ll ask him in the morning.

Appreciate the recommendation if they are not already doing so

tad4 profile image
tad4 in reply to FormulaRob

Flomax did not work for me and I now take Duodart or Doubluts. Both the same, contains Tamsulosin + Dutasteride. It works for me, one capsule daily at 5pm. Without it, I have trouble peeing. Dutasteride is also beneficial in combatting PC. I had 23 sessions of EBRT, breezed through it except for fatigue. Need to exercise. Also on ADT, that is another story and I have all the side effects but you put up with it because it keeps the cancer suppressed (hopefully). Stay positive and live life. Good luck.

WillowHawk profile image

Love and Christmas hugs, Kate

FormulaRob profile image
FormulaRob in reply to WillowHawk

merry Christmas Kate hope you’ve been recovering well and have a great holiday so far with the fam ❤️

WillowHawk profile image
WillowHawk in reply to FormulaRob

yes to both! ❤️❤️❤️

Tall_Allen profile image

I hope he is exercising heavily every day.

A-rat-22 profile image
A-rat-22 in reply to Tall_Allen

is this advisable?

Tall_Allen profile image
Tall_Allen in reply to A-rat-22

Unless he has a cardiovascular reason not to, it is the only thing that helps. If he can afford it, he should get a trainer to force him to do it when he feels fatigued. I doubled my workouts when I had radiation. "Taking it easy" makes fatigue worse. Exercise helps radiation work better, and may lessen its toxicity too.

FormulaRob profile image
FormulaRob in reply to Tall_Allen

Good to know. He’s been doing only 30 minutes maybe 3-4 times a week and only things he enjoys such as arms curling, tension band exercises, some chest. But he has left out legs/lower body entirely. Knowing the benefits of a more intense workout will motivate him with it further.. I’m excited to tell him tomorrow. Thanks Allen I feel a sense of relief knowing he can have a bit more control over his symptoms

Tall_Allen profile image
Tall_Allen in reply to FormulaRob

1 hour of cardio everyday - weights is less important

FormulaRob profile image
FormulaRob in reply to Tall_Allen

We just got an elliptical so that should make it easy for him to get into it. Even if he throws in his weights some nights too because it makes him feel better about himself but I’ll push him into this cardio now.

mrscruffy profile image

I did three weeks and had no SE's felt good enough to go to they gym every day. Sorry to hear he is struggling

DJBUNK profile image

I'm sorry to hear about your father's issues with his radiation treatments. I had 8 weeks of radiation treatments (37 individual sessions). The only real side effect was some fatigue, especially in the second half, but nothing that limited my daily activities including full-time work. I exercised regularly and tried to walk 10,000 steps daily but usually fell short of where I should have been. I continued the exercise after radiation ended as I was on 24 months of ADT. The fatigue faded after the radiation treatments ended, although I did experience radiation proctitis beginning about 8 months after treatments ended and continuing for about 2 years after, eventually diminishing to very minimal bleeding.

I can describe my experience but wish I could offer advice for your father. I hope he is able to continue the treatments without further anguish. Best wishes.

FormulaRob profile image
FormulaRob in reply to DJBUNK

thank you so very much DJBUNK for sharing your experience with me ! It was just one bad day yesterday for him which landed on Christmas to make things a little more depressing but based on your experience I’m maybe thinking a lot of what he feels is the ADT injections (firmagon)..

That testosterone blocker along with everything playing on his mind is maybe making him feel extra emotional and maybe feeling small things and amplifying them in his own head. I’m unsure at the moment but will keep monitoring him. Starting to think this only because searching through these forums I don’t quite see anyone saying it was as bad as what my father was feeling yesterday

That proctitis is awful by the sounds of it but glad to hear it cleared up and hearing how you were able to remain active.

Best wishes to you as well my friend :)

London441 profile image

The exercise is everything, as has been said. I agree with TallAllen that cardiovascular is crucial now but ongoing, strength is every bit as important. I had no side effects from radiation. The ADT effects were noticeable but not onerous at all.

This is how it is for most who exercise. Some will say side effects are different for every man and that the frequency and intensity are simply luck of the draw, but that is ludicrous.

Genetics and luck play a small part but the exercise is key. We all need plenty of it, especially as we age and don’t feel like it. This is true regardless of presence of absence of disease.

Indeed also a good trainer is a big help and entirely worth it. Great luck to you both!

MGBman profile image

After my prostatectomy I had 32 external beam radiation treatments. I had many of the symptoms that your father had. As other folks have said, everyone is different. I got so tired that my wife had to drive me to the cancer clinic and I would fall asleep in the car. Near the end of my treatment I had excruciating pain from cramping and serious diarrhea all of which landed me in the hospital for 10 days. I had major weight loss (I was not overweight to start with). Within a few weeks after my release from the hospital I recovered quite well. However, a year later I was peeing blood and had to have a bladder fulguration. Seven years later all is good except my PSA has decided to once again climb rapidly. While I can’t give advice, only my experience, your father is not alone in his journey.

jptss profile image

I was doing really good but on week two i ran 10 k cut the grass and then went in for my treatment which was approx. 12 treatments they put me on the table came back in told me to get off go walk around a bit but at that moment the diarrhea kicked in like crazy upset in my stomach so bad they told me that i was dehydrated it took a bit but got back on that table and never looked back, what i learned was i needed a steady appointment time so i said can i please have 730 am for the rest of my treatments not one day at 10.00 am next day at 300 once i got that i was able to finish with the best outcome.when i pee it hurts i poop more in a day than i ever have but i keep up the exercise even though my legs feel like cement also get the wieghts in that helps, i am on lupron predizone and aberitone 1000 mg per day even though mentally i feel my life is pretty much in a up roar your dad will come around, good and bad days i live for my wife and my children and my grandkids i got something to prove and in time so will your dad. God Bless and i pray he sees the light at the end of the tunnel soon.

smurtaw profile image

As stated: exercise. Not only cardio but also weights. Strength training is going to mitigate/reduce many of the ADT side effects. Cardio and hypertrophy are best for RT.

Estrogen patch

Has he had a CMP and CBC tests recently? Since my PCa surgery and treatment my electrolytes have been terrible. If I don't replace them, I start getting muscle pains, fatigue, and even some weird swelling.

Caseykane1 profile image

you mentioned your father crying and no one here has said much about the emotional side of taking the hormone blockers, losing his testosterone can make a man very emotional. It can make him lose control of his emotions I did 9 weeks of ebrt and 2 and 1/2 years of androgen deprivation therapy the first year I cried every day most of the time over things that had absolutely no connection to me or my life. I’d be driving down the street and see an animal lying dead next to the road and two blocks later have to pull over cause I was crying so hard I couldn’t see. Anything sad on tv would bring me to tears those commercials for aspca, them sad dogs just everything. Eventually one of the physician’s assistant’s put me on an antidepressant and that has helped immensely,started me at a low dose and then doubled and doubled again and I am much better originally it was prescribed to help with the hot flashes again caused by the adt but it really did more for my emotional state than the hot flashes.

Men don’t like to talk about these things but the treatments for this disease can and will kick his butt as others here have said exercise is very important both physically and mentally . Communicating with his treatment team what is going on with him , changes in behavior is important there are things they can do to help but they have to know what is going on with him. As so many here have said this disease and it’s treatments affect us all differently. Encourage him to join a support group so he can vent to others who have gone through what he is experiencing. Best wishes

Andy1569 profile image
Andy1569 in reply to Caseykane1

I had 44 RT treatments over 9 weeks. I'm at almost one year of ADT meds.

I have days when my emotions are a bit uncontrollable. I cry at everything and anything these days. I believe that it's probably ok to have the tears come up more easily. Afterall we were, us men that is, taught not to cry or show our emotions, other than anger.

Fight On!


Birdwood profile image

HiI did 8 weeks RT and 3 year ADT. Endorse the above comments on joining a gym. Don't need to do hectic stuff , 20 minutes on aerobic machines eg walkers and 40 minutes on controlled weights is adequate. Do a few sessions with an instructor. Main annoying SE of Radiation was every night, peeing on the hour , every hour for weeks. Firmly believe the discipline of going to the gym and doing a set gym routine takes the mind off the core problem. I found home exercise too easy to put off.

TylexGP profile image

I started ADT 8 weeks prior to HDR Brachytherapy followed up 4 weeks later of 4, weeks EBRT. I had some diarrhea at the end which resolved post treatment. The ADT has been harder on me mentally. With mood swings emotiona lability ( many tears) Holidays are hard grateful to be here but also the what ifs. Excercise helps a lot but sometimes you need to give yourself permission to have a good cry and then move on. Best advice Excercise, see a mental health care provider if it gets too bad and accept help. I still have more good days than bad and I am 18 months into my ADT.

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