After Radiation Issues: Hello my dad... - Advanced Prostate...

Advanced Prostate Cancer

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After Radiation Issues

Olivia007 profile image
36 Replies

Hello my dad had radiation to his humerus and hip area. About 6 weeks ago. He says he doesn’t notice any pain relief instead he feels more tired and same amount of pain and burning. I asked the Radiation Oncologist and urologist and they seem puzzled and said they have never heard of that? I looked at his blood work his red blood cell levels are low I asked the doctor about that he claimed it had nothing to do with his radiation more like the lupron shots but he’s been on lupron for 5 years and his red blood cells were normal prior to his radiation? If anyone can relate or know what it’s like after radiation again this is my dads 6th week since he had it done he’s 82 years old

Thank you

Olivia

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Olivia007 profile image
Olivia007
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36 Replies
Fairwind profile image
Fairwind

Has Dad had Chemo ? What is his PSA now ?

Olivia007 profile image
Olivia007 in reply to Fairwind

No chemo but he also started Xtandi and got off of Zytiga plus the radiation

Tall_Allen profile image
Tall_Allen

Is his hemoglobin too low for chemo?

Olivia007 profile image
Olivia007 in reply to Tall_Allen

He has not had chemo just radiation and doctor took him off zytiga and put him on xtandi. But yes hemoglobin is low too,

Tall_Allen profile image
Tall_Allen in reply to Olivia007

The question was - is his hemoglobin too low for chemo? Chemo is very palliative for bone pain.

Olivia007 profile image
Olivia007 in reply to Tall_Allen

No no chemotherapy Im not concerned with chemo he just finished radiation and he doesn’t feel good as the doctors suggested he would feel super less bone pain after that but no chemo and at this point if my dad doesn’t feel results I doubt he would ever do chemo he couldn’t even handle the radiation. He felt dizzy, pain all over got worse than he felt with his bone Mets and tired very tired. No will to do anything so I as his daughter and caretaker don’t think he would handle chemo

The levels of his blood started getting low after radiation but the doctors claim it has nothing to do with radiation? So I’m puzzled but they don’t seem worried but he’s not their dad we r just a another number

Tall_Allen profile image
Tall_Allen in reply to Olivia007

You should get a professional opinion - you know nothing about the treatment, just what is in your imagination.

Olivia007 profile image
Olivia007 in reply to Tall_Allen

I have asked his radiation oncologist and his urologist what do u mean it’s all in my imagination?

Tall_Allen profile image
Tall_Allen in reply to Olivia007

This is something you have to get a medical oncologist to weigh in on. There are guidelines as to when patients are good or bad candidates. They have to check his blood, liver, kidneys, etc. You can make an informed decision after you have the facts.

Olivia007 profile image
Olivia007 in reply to Tall_Allen

We did all that I’m not looking to do anymore to my dad and he’s exhausted at this point and feels the doctors have no clear answers but want his money . I was wondering what anyone else went through after RADIATION treatment With all due respect I don’t think u understand what I’m asking of people I wanted to know everyone’s experience after radiation my dad has seen all the doctors has had all the blood work we have been to 4 doctors. Thank you but no need to respond Tall_Allen.

Hirsch profile image
Hirsch in reply to Olivia007

Olivia. You know sometimes the treatment is worse than the disease. What happened to Zytiga? Not working?

Evans71720 profile image
Evans71720 in reply to Olivia007

Not my place here Olivia, but I think he’s asking was there reason why the taxane family of chemo was not chosen after the Abiraterone was no longer effective.

I’m sorry that the pain has yet to abate . RT drove me into fatigue . I was just 53 ,I can only imagine at 82? He and I both have been on adt 5 years. This holds its own set of special charms . My Hope is that he will feel pain relief soon and recover in time from RT . If he gets lethargic like I did I’d suggest someone getting him up and walking or whatever he can do each day .At my worst point Id shut down and sleep in bed for days on end . Not drinking water or eating . That was a form of depression for me . My able wife would get me up and moving.. Someone to encourage him daily is helpful . My opinion is that once we ‘ve had cancer treatments the Drs do know all of the side effects but they play them down and chalk it all up as the price we pay to live a little longer . Fatigue was a major side effect of RT for me .. Good luck Olivia with PaPa feeling better soon . Thank you ...Scott🌵

Olivia007 profile image
Olivia007 in reply to

Thank u😊

in reply to Olivia007

Good thing that he has you . 🙏✌️

Olivia007 profile image
Olivia007

That’s what I thought too but I’m not a doctor? How long did it take for your blood count to get back to normal? Thank you again for responding.

chalaan profile image
chalaan in reply to Olivia007

Hi, that is correct, you are not a doctor, you are his daughter and you are absolutely correct to ask questions. My brother had the same thing happen to him after radiation. I would suggest that you google the issue and see what you can find out and then go from there. My general thinking is when a person thinks something is not quite right with an answer, there is something not quite right with the answer. I get it that you want your father to get better and you want to protect him also. Been there with my own father, brother, and mother. Regardless, doctor stating that 'they don't know why' is not a proper answer.

Olivia007 profile image
Olivia007 in reply to chalaan

😊 Thank u

Olivia007 profile image
Olivia007

After his radiation treatment he’s afraid to have anymore done to him he felt horrible and still feels sick from the radiation. I just needed to know how anyone else did on radiation weeks after post.

Thank you

Dett profile image
Dett in reply to Olivia007

Hi Olivia,

My husband (stage 4 with mets) completed a six week course of radiation to the prostate area several weeks ago. He was not in pain before, and he’s not in pain now. From what I understand, most men experience significant fatigue during and after treatment. Amazingly, husband actually has less fatigue now than he did before. I know this is not reassuring, but I’m increasingly learning that men can have very different responses to different treatments. It seems really paradoxical that your father’s pain has gotten worse after radiation, especially since radiation is supposed to help with the pain.

Hopefully, you are working with a good medical oncologist who can provide insight into what is going on and can advise you on how to proceed. Personally, I think it is really important to attempt to realistically gauge how much treatment your loved one is willing to tolerate, and to respect their wishes. In any case, your Dad is extremely fortunate to have such a kind, loving daughter. I wish you the best.

Olivia007 profile image
Olivia007 in reply to Dett

😊 Thank u

treedown profile image
treedown in reply to Olivia007

I am much younger than your dad and finished 44 treatments 3/16. My side effects have all been in my blood work. Low Red Blood Cells, Low White Blood cells. For a short time I let that get to me and slowed down. Then I realized I feel fine so I told myself to get moving again and quite letting test results rule my life. I am not saying this is what you should do but I agree with Whimpy that movement is very important and the many things I read on this forum support that. Unfortunately treatment side effects are as varied as the cancer itself and each of us have additional burdens on our bodies (i.e. age, mental fortitude, activity level prior to dx to name a few) that determine much in our journeys. Peace to you and your father I wish the best for both of you. I would just add that all information is valuable but not always given or received in the right way or at the right time.

georgef16 profile image
georgef16

Hi sorry to hear about your Dad. I had 39 treatments of Proton beam therapy and 3 doses of Sbrt radiation to my pelvic bone..Lupron for 6 months. I feel nothing dramatic..I feel good,strong and feel healthy.after all my PSA is undetectable but we are all different...by the way I was Gleason 9 and had robotic prostatectomy before my recurrance.

Now.im 66..I play soccer swim,run about 5 times a week,play volleyball as well,walk,bike.im very active ...also I increased my intake of vitamin D.

Now your dad is older at 82 and cant do what I do. Now Olivia ,any other radiation therapy other than Proton are harmful...imrt, sbrt and so forth ..

I gave u a snap shot of what I have done done to minimize problems..I engaged in this regime from my first day I hear I had PC. What kind of radiation did your dad do?

Olivia007 profile image
Olivia007 in reply to georgef16

Just the regular beam radiation he laid on a table and had his humerus and hip/pelvic bone radiated.

georgef16 profile image
georgef16 in reply to Olivia007

Got you...well IMRT,SBRT radiation therapy are very evasive very harmful to other parts of the body...I forgot to tell u that even with Proton I felt burning sensations as well but only when the beam entered my body...nothing dramatic. So if your dad can have him into a regiment of exercise with deep breathing...good luck Olivia ..I hope he overcomes the problem.

Olivia007 profile image
Olivia007 in reply to georgef16

Thank u I hope he does too. He lives alone my mom his wife died 2 years ago so I’m sure he feels lonely and when ur lonely u feel every ache and pain I try to visit but with coronavirus it’s been difficult thank u again

Hirsch profile image
Hirsch

I wouldn’t be surprised. Their level of general clinical experience can be sub par

OldChappy profile image
OldChappy

Two days after radiation I had slight neuropathy in my right buttocks, behind right knee and on outside of right foot. Radiation oncologist said for MONTHS it was unrelated. After chemotherapy i began falling and then six weeks later and some more testing it was determined that the radiation (which was completed 6 months earlier) had affected my leg muscles and nerves. Still working through that. But my PSA is undetectable.

oh, yes, my Radiation Oncologist finally sent a note saying, "It happens sometimes".

jackcop profile image
jackcop in reply to OldChappy

"Radiation Oncologist finally sent a note saying, "It happens sometimes"

That is unacceptable! S/He could have easily said, "Yes ,it's possible."

Sorry for your pain but glad your psa is undetectable.

j

monte1111 profile image
monte1111

Hi. Tall_Allen make you mad? He was trying to help you, in his Tall_Allen way. Guess you heard things you didn't want to hear. A medical oncologist (who may suggest chemo) is maybe a good step. I don't know where you are. And maybe its just financially out of your reach. Sometimes the world just stops turning. I hope your dad finds relief, and I wish you both the best.

Olivia007 profile image
Olivia007 in reply to monte1111

No he was claiming it was in my imagination I have been to every doctor appointment with my dad for 5 years I asked what everyone experience was. I want to hear what everyone says. We are seeing a radiation oncologist a regular oncologist and a urologist and my dads primary family doctor so all 4 doctors are puzzled at my dads side effects from the radiation and for Tall_Allen to claim it’s in “my imagination” what is??? Regarding chemo that is something my dad would not be able to handle when he couldn’t handle beam radiation doctors don’t always know best.

We had a doctor in Michigan that was the top oncologist in the state of Michigan he is in jail now because he was telling people they had cancer when they didn’t and giving them all these treatments so he and his family could have a lavish lifestyle after years and years of people claiming they weren’t sick he was finally caught had a trial and put in jail for 40 years and this doctor won every doctor oncology award.

So I’m not always trusting of doctors.

Thank u

Olivia007 profile image
Olivia007 in reply to monte1111

Tall_Allen didn’t make any sense to my question he assumed I’m looking into doing chemotherapy and to leave it for the professionals so he has a imagination or didn’t understand my post I’m not mad at what I heard if chemo is our next step before Xofigo we don’t know bring it in I need to know everything from people who have had radiation not chemotherapy we r not there yet!!!!!

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

Hello Olivia (remember one of my favorite female names),

I looked back at your history and I see that you're a single Mom with two children and that your elderly Father does not speak English. You have a lot on your plate but I (we) would like to know where you're located, where you Father was treated and the Doctor's name(s)? Of course all this information is voluntary but it helps us help him and helps us too. Thank you and bless you for being your Father's spokesperson....

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/13/2020 8:04 PM DST

Olivia007 profile image
Olivia007 in reply to j-o-h-n

We live in Michigan his radiation oncologist is at MHP Radiation Oncology institute and his regular oncologist is the Beaumont Cancer and Leukemia institute and his urologist is Michigan institute of Urology

Olivia007 profile image
Olivia007

Also both oncologists claimed when the urologist changed my dad from zytiga to xtandi they said dads PSA wouldn’t do anything well they were both Wrong his PSA WENT FROM 14.75 to1.45 in a month so doctors don’t always know best especially when u pray and God hears my prayers

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

Thank you for your quick and detailed response. I wonder if any member here knows anything about the MHP Radiation Oncology Institute and the Beaumont Cancer and Leukemia Institute as well as the Michigan Institute of Urology?

I think most members here would advise that your Dad see an Oncologist who specialize in Geriatric Prostate cancer.

Doctor's are only human, so you must have your Dad treated by a good one recommended by a friend or by a member here. Hopefully God will always hear your prayers...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/13/2020 9:51 PM DST

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