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Advanced Prostate Cancer
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Frightened Daughter Needs Advice

My 84-year-old father was just diagnosed with stage 4 prostate cancer. He has multiple lesions in his bones as well as lymph nodes in the pelvic area. Psa is14. We were shocked to hear as it had been active surveillance for so long and urologist wasn’t concerned.

He just recovered from having stents put in as well as valve replacement when he was diagnosed. Diagnosis was at Mount Sinai in New York with treatment being 2.5 weeks of Casodex, then Lupron and Zytiga. We got a second opinion with Dr Phillip Kantoff at MSKCC who concurred with MT. Sinai about course of treatment (although he was concerned about heart issues with the medication being given to him )

We were feeling very encouraged because both doctors felt that his condition can be treated. Until today...My father had his first Lupron injection yesterday and he is extremely fatigued and nauseous and very very down. I don’t know what to do.

I’m hoping that this generous community can offer some insight into how to make my dad feel better and counteract some of these Lupron side effects. You have given me so much information,comfort , hope and inspiration.

With gratitude xo

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Hi, unfortunately the first year on Lupron is the worst (for me anyway). Activity and exercise lessens the side effects but i understand your dad may not be able to right now. There are meds to take for the hot flashes and depression if these are an issue. Other than that i dont know of any surefire way to take care of these side effects. So sorry i could not be of more help.

Thomas

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Thanks for your response and kind words. It’s comforting to know that there are others out there that understand.. that in itself is helpful ..Wishing you you good health

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Your welcome

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We've all been through the side affects of treatment. Your Father is 84, God Bless him. I'm twenty years younger and it's been extremely tough for me. To me with everything he has been through, he sounds like a very strong man. I would start reading other posts from the community to help comfort you and him.

Best of luck,

Ralph

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Thanks for the reply and encouragement. Wishing you good health,

Carins

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I started straight off with lupron solo. Mets in bones and lymph nodes. Didn't know of T. spike without doing casodex ahead of Lupron. Two weeks in already dropped PSA from 61 to 6.6. Wish we had added Zytiga or Xtandi right off. Added Xtandi 5 months later with good effects. You didn't mention Prednisone, need it with Zytiga to counter side effects and protect liver. Makes life much easier on you with steroids. Check with Drs if not getting it. It's tough starting out with stage 4, Hope his treatments will be as effective as mine have been. With that low a PSA he should do fine with Pca and treatment.

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Thanks for the response. Yes , my Dad will also be taking Presidone. I’m getting a crash course in this disease and treatment.

Lots to learn . With gratitude and wishing you good health,

Carins

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I appreciate your concern for your dad. He’s lucky to have you fighting his corner. I started Lupron the day of my diagnosis and have been on it since. For me, the side effects were mostly hot flashes and tiredness, so I’m sorry for your dad’s more extreme reaction. But here’s the truth for me: at no point in my 3 1/2 years of treatment could I honestly say that any treatment I was given made me feel better. Every treatment (hormone therapy, spot radiation, Provenge, Radium 223 and two types of chemotherapy) came with discomfort and a somewhat reduced quality of life. I now just take

these side effects as a matter of course and take it on faith that the treatments will increase the number of days I have to enjoy life free of the most painful and debilitating effects of this disease. So please don’t panic, but do talk openly with your dad’s medical oncologist about what is happening and what can be done to make the treatments easier for your dad to manage.

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Thank you for your response. Since it was the first injection, we will have to see how he feels in the next few days/weeks.

With gratitude,

Carin

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I agree with Reptale. No treatment we receive is going to make us feel better, other than being cured. We all have varying responses depending upon what our treatments consist of and what we can stand. Fatigue, depression, hot flashes, aches and pains are fairly typical. Each person’s cancer and their response is different. Be gentle with him when he is tired and doesn’t want to do much. Don’t coddle him, but expect his treatment is a long term thing and he will experience much. He needs care and support and you sound like a wonderful daughter! Be blessed.

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Will heed your advice and be gentle and thoughtful.Thanks for your support and advice. Wishing you good health.

With gratitude

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My dad was diagnosed last year with stage 4. Hopefully the side effects will improve with time. All the best, may tomorrow be brighter than today.

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Has your Dad’s side effects improved ?

Thanks for reaching out

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They have. I guess you get used to the fatigue and weakness in a way.

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Carins, I am 30 years younger than he is ... stage 4 Gleason 9 Mets to bladder and spine... I am on lupron and Zytiga also... the first shot is a bitch... it will get better ... Walking helps ALOT!!!!

Prayers and God love to you and your father!!

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Thanks for your words of encouragement!

Really appreciate it. Wishing you good health

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So sorry for your father, I’m 67 with stage 4 with the same Mets, my doctor went straight to chemo, at your dads age they may be afraid of that. I’ve been on lupron for 23 months now, the doctor finally put me on Effexor to help with the hot flashes and the depression. The depression may be simple to explain, he’s looking at something that won’t go away. This is a long battle. I wish him luck and send him and you my prayers

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Thanks Larry! Trying to be optimistic that the treatment will work and he will have good quality of life.

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Sorry to hear your dad is having such harsh side effects from the ADT. I’ve been on Lupron (or Eligard) + bicalutamide (Casodex) for 3 years. I had pain and tenderness for several days at the injection site (abdomen) from the Lupron. They switched me to Eligard which is injected into the buttocks, which for me has been less painful and more tolerable, with fewer side effects. The bicalutamide (Casodex) has some of the same unpleasant side effects as Lupron... hot flashes, night sweats, fatigue, and muscle weakness. I never had much in the way of nausea from the ADT, but my MO gave me an Rx for Ondansetrin when I was doing chemo. It’s a little pill that dissolves on your tongue...works almost instantly and very effectively to curb the nausea and the feeling that you are about to vomit.

The good news (if you can call it that) is that the side effects from ADT gradually abate and become much less intense as you continue treatment. Also, you begin to adapt to your “new reality,” and adjust to them. You can Google the side effects and get lots of articles (and ads) for treating them. For muscle weakness and fatigue about the only thing I have found is exercise. It doesn’t have to be intense...walking, light weight lifting, etc., whatever he can tolerate given his age and cardiac issues.

Discuss his side effects with his oncologist. In some cases they can adjust the drug ( like they did for me, switching from a Lupron to Eligard), lower the dosage, and/or prescribe other meds to help ease the side effects.

Best wishes to your dad, and to you as his caregiver, for success in his PCa treatment.

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I’m learning as I go along but this site and the wonderful people on it are so helpful in navigating this journey. I’m hoping his side effects will diminish over time.

Wishing you good health.

With gratitude

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I am assuming that your dad lives in New York City, so he has the distinct advantage of being able to join us at our Metastatic Prostate Cancer Support Group which meets twice a month in the city. The group will provide him with a place where he can meet men of a similar age who are also diagnosed with metastatic Prostate Cancer.

We meet on the first and third Thursdays of each month. The group has helped many men with advanced, metastatic prostate cancer to come together and offer each other support, education as well as a vehicle to commiserate with others who understand.

You can learn more about our support programs at cancerabcs.org/support-groups/

as well as the specific times and meeting places (at Mt Sinai Hospital in Union Square and at Well Cornell Medical Center) on the Cancer ABCs calendar at cancerabcs.org/calendar/.

There is no need to register, all he has to do is show up and join us.

Joel

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Thank you Joel. They live in Bergen County, NJ close enough to come in for treatment but don’t know if my Dad will want to drive in for meetings . Traffic on the way back is tough. Are there any located in Northern NJ? Perhaps he’ll join the call. Either way, I appreciate the information.

Thanks again!

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Understood, the call is open to anyone, not just to men. So, if you would like you too can join on the call.

Joel

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You may feel this is cruel but where it me I would elect comfort care.

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Yes it is cruel. Only looking for positive people and good vibes. My Dads MO is very hopeful for a good outcome so I’ll be listening to them

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Carins

You may not think so but your dad is relatively fortunate to have lived so long before getting this lousy disease. So for those of us with stage 4 our lives are changed forever and we have a new normal to deal with. Fortunately there are many treatments available to prolong life but none of them come without side effects. Like all hard knocks in life we learn to live with them and adapt. I’ve come to thank God for all my blessings and not focus on the negatives. He’s answered all my prayers.

Bob

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Absolutely. I know that he has been lucky.

I am extremely grateful for his longevity and up until recently, good health. Hopefully the side effects will diminish over time or he will learn to adapt to this new normal. Thank you for your kind words.

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I was glad that my wife was driving me home after the eligard shot. I was tempted to go to the ER but toughed it out. It hit me pretty hard. After a couple of days I was over it. I hope your father feels better. I am cynical about doctors who recommend active surveillance, especially when they don't stay on top of it.

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His new normal should be fewer side effects as he adapts to the meds,his doctors prescribe mitigating meds, and hopefully he can start exercising which is vital.

Bob

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Hi Carins....your dad is tired because these drugs have stripped him of his testosterone which cancer cells need to grow, I am 81 and was diagnosed ten months ago with Stage 4 and a Gleason score,of 9. After ten months on Eligard (similar to Lupron), Zytiga and prednisone my PSA is undetectable and I am feeling pretty good. As happen with these drugs, I developed osteoporosis and last week had my first infusion of Zometa to combat it. Except for occasional bouts of fatigue, I have been relatively symptom free which I credit, in part, with exercises and help from a physical therapist I see once a month. I am a firm believer that physical therapy should be part of every treatment plan. My therapist tells me that Medicare gladly pays for the service because it keeps patients moving better and more able to take care of themselves longer. As far as the nausea, you MO should be able to give him sonething to help. Best to both of you as you travel this scary and often unpredictable road.

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Thank you so much. He’s currently in cardiac rehab for his heart and he’s planning on continuing . Do you think he needs PT in addition ? This is all so new because he was only diagnosed 2.5 weeks ago and trying to navigate this scary new world has been challenging. Thanks to people like you and this forum it is less frightening and very informative . Just curious, did you have active surveillance before? Did you initially have side effects from the treatment and they diminished over time or you just never had them?

With hope and gratitude ,

Carins

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I was not under surveillance. I went in for helium laser procedure on my prostate. The tissue samples were sent to a pathologist who informed my Doc that I had cancer with a Gleason score of 9. Subsequent scans confirmed it had metastasized to three places in the bones. If your dad is in rehab they should be able to recommend exercises to help with bone density and muscle mass loss. I am told the biggest threat to me in the short term is a fall and a broken hip or leg. Therapist has recommended exercises to improve balance which have helped quite a bit. You might ask his MO about a bone density scan to see where he is on the bone strength scale. I have been one of the fortunate ones who have escaped a lot of the major side effects. At least so far.

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Dear Carins,

Please don’t take my reply in a negative way…my sole intent is to give your father and you “hope and inspiration”. Bob (Break60) made a comment that ”You may not think so but your dad is relatively fortunate to have lived so long before getting this lousy disease.” I’m sure many of the men on this forum have to agree with him…you also replied “that he has been lucky”. His age is with him and will most likely allow him to be a prostate cancer survivor. I’m guessing that the majority of men on this forum are much younger than dad and have been battleing this “lousy disease” for years. I myself (nine years your dad’s junior) have been dealing with this for almost 14 years and thank the Lord every night for granting me 75 wonderful years. I have been a stage 4 PCa guy for 'not sure how many years', recently had eight sacral lymph nodes excised (Lord only knows how many more are involved); however, still feel good and look forward to every day that I’m vertical! Most men with PCa only hope to make it into their 80s. A very close friend of mine who battled this disease for 16 years (recently passed away at 70) frequently would tell me that he was hoping to make it to the ‘ripe old age’ of 80. You are probably aware that most men if they live well into their 80s will probably have PCa. All of us here are rooting for dad and most of us are hoping to follow in his footsteps! My best, Ron

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I don’t take it negatively at all. I know most everyone on here is supportive and compassionate. I feel for all of you that have been battling this disease for a while as well as the newly diagnosed. I appreciate all advice and wisdom.

With gratitude and good thoughts,

Carins

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Hi Carins, as you can see by reading most of our posts we all are in this together and we welcome any and all questions and advice from each other. I have been treated with Zytiga,Prednisone,and ELIGARD hormone therapy. When I started therapy my PSA was 14.7 and after just on month dropped to 0.1 almost undetectable. I feel great and hope to keep it that way. I wish your Dad the best and know you have found a great forum here with a wealth of knowledge and Brotherhood. Leo

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So great to hear you are doing well! Thanks for the kind words of encouragement!

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Hello I’m my fathers caretaker he is 80 with bone Mets he’s on Lupron and Zytiga Prednisone and Xgeva. Since this was your dad’s first shot maybe it was a side effect and he will get better as time goes on believe me the needle is big the solution is a lot when I just look at it when they inject it to my dad I feel sick so give it a chance maybe his symptoms were related to other things take a breath I know easier said than done I worry about my dad everyday like he’s my child and the roles are reversed. Best of luck and I’m here if you need to talk or vent.

Olivia

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Hi Olivia,

Sometimes it’s just so overwhelming to see my Dad,who has always been the rock of our family, look so frightened and confused as to how this happened.

Thankfully, he has my Mom who has been amazing. I am the oldest and without my own family so a lot of responsibility has fallen on my shoulders regarding research,selection of Drs, attending all the appointments and spending every weekend with him. Really more as a distraction just so they are not thinking about the cancer 24 hours a day. I know I think and worry about him all the time...I guess that what happens when you love your Dad. How is your Dad doing? When did he get diagnosed? Thanks for reaching out. It makes me feel so much better knowing there are others out there .

With gratitude

Carins

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Hi Carins,

I’m also taking care of my dad. He’s 78 with bone mets. We’ve done Lupron, Provenge, Zytiga, Xgeva, Doxetel, Xtandi, Radium 223, and are now waiting for approval for Apalutamide. It is very frightening and, like Olivia007 said, the roles are reversed, so the worry is pretty tough.

I’m glad you found this site with the very knowledgeable and caring ppl here. Wish I had found it years ago-would have been so helpful to have the insights of everyone here instead of shooting in the dark for so long.

Sounds like your dad is getting very good care.

Good luck and keep us posted.

Debbie

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Hello ! First do not look up stats on Google. They are outdated and there's much hope for your father. My dad got diagnosed at 62 I believe and he's doing well. When diagnosed I went into a deep depression based in fear. I had hope when I found all of the men here living longer full lives. Reach out to me by pm of you want. Please read the about me on my profile as it shows my dad's treatments ,symptoms and successes. You have a place in my prayers. As a daughter please remember self care because it's so easy to worry so much we forget ourselves. Also don't always talk to Dad about treatment as it's often a good break to hear about your joy, to hear about anything but cancer. So Breathe. Your father is more likely to die with cancer than of it according to recent advances . You can also pm and text me because emotionally I have two years experience and I couldn't love anyone in the world more. Stay on top of research and don't forget he doesn't want to be treated like a patient. .. he needs very much to still feel like a dad. Give him that. I mistakenly at first did not and my sister did. It's what makes him thrive and his Outlook is amazing and Outlook and general health and happiness do matter in this struggle. My sincere prayers, Erica

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