How can I help my dad to live with stage four metastatic prostate cancer, in lymph, and through bones. Adt plus chemo: healing stories?

Hello to you all as you are all my heroes right now. My father, age 64, was diagnosed mid July with advanced prostate cancer. He is on lupron, which I myself have been on and understand the difficulty, and hes on exgeva and will be undergoing chemotherapy for 6 sessions 3 weeks apart. He is eager to start sooner but is starting by mid november. Psa 78 down to 27 in 6 weeks. As a daughter, I understand that my father wants to protect me , but I've done as much research as possible. However, I have found the internet to give very harsh information, survival rates and cold statistics, yet no real invetory of the human experience so that i can understand at multiple levels. I know there are men out there living with advanced prostate cancer beyond that statistical time and I need some hope and faith in the treatment. I am so fearful of him dying because of chemo not cancer, and I'm asking what success some have achieved and if any herbs or supplements helped to protect your major organs? As a caretaker,please give me hope or truth about this protocol, and any advice can you give me to make this journey easier on him. I believe that some out there can untaint my mind from reading so many statistics. My dad's mindset is very positive,he is in pain but continues to work, ....exhausted since the lupron bUT CANNOT Sleep and has been seking advice for sleep . Any and all responses are helpful. I have cried daily until recently reaching acceptance and embracing this journey together, but I'd like to hear from survivors to inform me of the effectiveness of this protocol and what I can do or buy to help my dad sleep, heal, and live as fully as possible for as long as possible . My dad is not emotionally ready to reach out himself but i will convey any stories or advice Gentle hugs and true admiration of you all.

37 Replies

  • Daddyishiealing,

    I am 64 years old have gone through all the rhythms of this beast. We all act differently to the drugs we are taking.

    At this point, all medical treatments exhausted, home hospice is the option. My personal experience varied with various drugs. Chemos never were effective for me. Provenge was a total failure and proof of working with all the cost. Ironically when people finish drug treatments, the body goes through a relief and uptick of all the abuse!!

    So, my advice is take one day at a time and enjoy life.

  • Thankyou. I will take things one day at a time and not lose faith. I'm praying there are new trials that can help you.

  • For me, docetaxel (chemo) was easy, although I was tired. For that, coffee may help. It sounds like your dad found out he had prostate cancer because of pain. Bone pain. The immediate fix is narcotics, which calm the nerves, or radiation which kills the nerve. This is just to get by temporarily. For comfort.

    Radium223. I think you should be getting radium223 (Xofigo) which does soften the pain, but also extends overall survival by killing bone metastases. The sooner the better, assuming that he can tolerate it. I understand that generally it is well tolerated, although I have also heard some problems.

    64 is a little young to have symptoms of bone pain. You dad may have a BRACA mutation, which is both serious and has a treatment: PARP inhibitors. See wikipedia.

    Your doctor should have already told you this, or something very like it, or else find one that does. You should already know this.

    Exgeva is better than Fosimax, slightly, or the other bisphosphonates, but I would not rely on that to do the heavy lifting. You took Lupron?

  • He's on Lupton now. You are correct that a fractured sacrum was what led to the diagnosis months after being told it was a slipped disk. He has not been tested for the bracha gene nor any chemo sensitivity testing. I am aware of radium 223 but no doctor has suggested it yet. Then again they also told him nutrition doest matter even though it's undebatable that sugar feeds cancer. He is supposed to get a third opinion. Thankyou for this info. There is no cancer in the family and this has come as an absolute shock.

    Keep smiling and healing, my friend

  • *lupron

  • Newsweek printed a "special health issue" dated 08/07/2105 titled "CURING CANCER" and a banner "2015 TOP CANCER DOCTORS". Your library may have it. It has pages and pages of well known doctors.

    Also there is a book printed that your med school could easily have on its open shelf reference section on top 100 doctors, and one called top 100 cancer doctors.

    There is also this site

    which I think is connected to the company that prints the books.

    You can also go to Audio Digest and see names of some doctors who present papers at conferences. These talks were selected to be of general interest and help physicians fulfill their continuing education requirements.

    I would not expect any doctor to go out of his way to suggest things that are at all off the beaten path. Many would but you can't count on it.

    BRCA is shot in the dark. I hear about 15% have it, but more concentrated in more problematic cases. Google it?

    You can also look at clinical trials, if you have an idea for a treatment that you favor. Are you comfortable doing that? - bone mets.

    This one is quite edgy in my opinion. Kennth Pienta, MD at Johns Hopkins

  • The oncologists want to go slow, but my father is in a hurry as he wants to feel he is "doing something." The doctors are doing Luton and don't want chemo until 12 weeks so they could be sure the Lupron is wotking. I do believe he is open to anything once the standards have been tried. I've heard some do respond positively to Lupron, for years, and it all depends on the person. I am going to follow all lines of research that you suggested. Of course with insurance issues and there protocol on first second and third line drugs and all that red tape, things become an issue. It's horrifying how much control they have over a person's available covered treatments.

  • true. Some peoples response to Lupron is quite remarkable, and lasts for years. It can happen. But many treatments dont seem to affect the PSA and work slowly (like Provenge) and I think they should be "moved up" in the treatment pattern. There is a natural tendency to avoid chemo with Provenge, as chemo hits the bones and the immune ability. (neutropenia) Mean time, it would not hurt to know your numbers - vitamin D, calcium, testosterone. More interesting to know them prior to treatment. (even pap / phosphatase). bye

  • I will reply with the new numbers filling oct. 28 blood work. I agree regarding Provenge as that's what I wanted my dad to start immediately, because I have faith in the realm of immunotherapy. It was to my dismay that I found out that there's a series of protocols that must be done in a certain order. But I don't want to get into a rant on the medical system, so I smile to you and send positive vibes instead.

  • "Doing something" reminds me of Lilly Tomlins joke. She said - when I was young I wanted to "be somebody". Now I think I should have been more specific.

  • Here is a video on radium 223

    they say "asymptomatic patients". Your dad already has a broken bone and pain. Radium may not be enough to halt progression in the bones. The problem is not that the cancer will cause organ failure (liver lung kidneys). Rather a kind of battlefield will be set up and there will be friendly fire.

  • You probably do not know where the mets are, or at least which ones are progressing, assuming that the cancers are at various stages. Best bet as far as I know is c11/choline at mayo clinic. Knowing what is happening is often important to knowing how to treat it. The strong point is that he is still responding to ADT. But I am afraid that we all have less time than we think - ie cant be shy. That's my issue anyway.

  • Ty for your honesty and devotion to helping me learn, as well as to support you all in your journey. How long have you been controlling advanced pc. And you are correct there are over 20 Mets and they are widely spread and my dad doesn't want me to see the scan results for fear it will dishearten me and I respect his privacy. Some people tell me don't research as it will drive you crazy but I feel safest being informed and thank you for the time you took to respond. I sent my dad your thou h ts on the radium 223 and BRCH testing. He is also grateful.

  • The trial I sent you is by a (to me) amazing doctor. He is using a drug they use in transplant cases to move cancer out of the bones. Its a trial. If I can find something on him or it I will post it. I am flying to see my niece today, so probably not today. I applied for that trial but only just, and have not heard back anything yet. The trial document is hard to understand but may give you some clues as to what he is doing.

  • My oncologist recommended the C11 and F18 and I did both in Phoenix...Arizona Molecular. They found two cancer spots, we radiated those two spots. About two years later ( one year with without ) my PSA started rising. I went back to AZ Molecular for another F18. The two old spots they told me were "quiet"...however they found two new spots. As I stated before ... tomorrow I do my third chemo treatment and I'm taking casodex and lupron. PSA Has dropped back to < 0.1 from August 1st. 3.13. Last chemo will be 12/15/2016, then we will do another F18 probably early January and decide if we want to radiate those two spots. Just keep up the things discovered every day.

  • That seems perfectly normal and proper to me, but it is actually (as far as I know) very unusual. Not done.

  • One thing that is completely harmless and offers a 10% chance of longer survival (buys some time, maybe a lot of time) is a test for BRCA mutations. I am not saying everyone should get this. I am asking why everyone is not getting this.

    The other test close on its heels is the ARV7 test. A reason not to get it (I imagine) is that it is not been fully validated yet. But Johns Hopkins is willing to do it, and they are not crazy people.

  • BRCA (actually BRCA1 and BRCA2)

  • We have some similarities. There is also no known cancer in my family, up to first degree cousins. And I also have met to my lymph nodes. It's still uncertain whether it has met to my bones (my new onc doesn't want me to go through anymore radiation, unless necessary, to track its size because my primary treatment was rad). And because of the more than double the size of my LN, it's suspected it's my blood.

    Initially, my docs recommended to aggressively treat it with multiple rads and meds. I switched to an onc, who also does research on PCa, and I'm on solely on Lupron. Now, we know it works on me. If I did simultaneous treatment of multiple therapies, I would be guessing which of them worked. Hopefully, I get enough years on Lupron to control PCa progression until the coming of a better treatment.

    As I understand it, if Lupron works for someone, the drop in PSA is rapid. A 3-month trial on it may be worth the benefit vs. the delay of a more aggressive treatment in case it did work. And until tried, no one knows how bad the side effects are. Studies of its side effects may be of no value since it depends on the individual. Sometimes we may just need to trust our onc to make that best educated guess for our treatment, weighing benefits vs. side effects. Choosing your onc would be the best decision you'll make for your treatment.

    There is also a similar track to my treatment and your dad's treatment. I was also antsy when PSA didn't go down to zero after my primary treatment. And after I found out I have mets (most likely even before my primary treatment), I was devastated and was ready to throw the kitchen sink at it. Settling down and trusting his treatment may just work is a good option at this time. Time is not being lost when you're trying out a reasonable treatment. And whether that works or not, that's a valuable info in choosing the next treatment.

    I also have trouble sleeping and often takes pills to help me get zzzs.

    I wish all the best.

  • Thank you for your support. I do believe the Lupron is working and tests show psa going down,so I probably should be exhilarated. I'm just nervous about the chemo because I believe without nutritional therapy or supplementsomething I worry about the damage, but I think you are right. I do have faith in my father's choices, and I will stand behind him ,well next to him for this choice too. Thank you for reassurance. Yope 4 I truly pray for everyday healing and I like you do believe in. The scientific advances being made daily . Xoxo kindest regards

  • Hugs to you! While reading all of the statistical (and scary) stuff online, there are so many important things we can be doing. Diet is definitely one of those things. Check out the ketogenic diet for cancer ( "resources" where you will find everything that you need. The diet is amazingly good! Dr. Fred Hatfield was diagnosed with advanced metastatic prostate cancer, with bone metastasis and given 3 months to live. That was in 2012. He went on the ketogenic diet and the rest is history:

    We follow the ketogenic diet for cancer faithfully. We also supplement and focus on a very healthy lifestyle. Old-fashioned, but we believe in plenty of fresh air and working out. As long as we go to the gym and lift weights consistently, my boyfriend (also on Lupron) sleeps through the night pain-free. He has learned the hard way that slacking at the gym immediately results in a return of the pain and sleeplessness. Most doctors are notoriously ignorant about nutrition.

  • Streaker

    Ty so much . I agree with the diet and nutrition as a safer cure..or remission. Unfortunately, my dad loves candy , and I believe he's trying to still enjoy things he loves and he loves to eat. Lol what supplements do you find helpful?

  • Your dad can eat like a king on the ketogenic diet, as long as someone is willing to prepare his food. My dad was diabetic and a major sweet tooth. My mom has become the ultimate keto-chef, and his blood sugar is down in the 70's now. Also, they both lost tons of weight, and Mom is off her blood pressure medicine for the first time in 30 years. I make all kinds of sweets on the ketogenic diet. Candy, cookies, cheescake, ice cream! Because the diet is high fat, it is possible to make amazing goodies! The trick is to use a sweetener like erythritol, which is virtually identical in appearance to granulated sugar. I even make a pretty amazing low carb pizza. In terms of supplements, a good multivitamin is a place to start, but vitamin D and Magnesium. Also we use Taurine and CoQ10, which in combination with the Mg brought his blood pressure down to normal. We use nitrate/nitrite-free bacon, and grass-fed beef. It's pretty darned delicious eating...

  • Wow thanks for all that info. You are making me hungry. I considered trying it to reduce inflammation in my body from auto immune stuff but I'm underweight and need to put some pounds on. Ty for the ideas . I'll look into it and print out some stuff for my dad. Ty soon much

  • Just be sure to check out Dr Agostino's website for the books on using the ketogenic diet for me your dad will love the food unless he is a vegan!

  • DH,

    One of the best ways to deal with insomnia is through exercise. Get your dad one of those home exercise machines that uses rubber bands for resistance.

  • I'll look into it because I'm aware of resistance bands but not a machine ty so much

  • We all react to treatments differently, and I know my experience is not typical. Your dad's positive attitude is key, and a key part of my experience. I don't take supplements (except multivitamins and calcium, both recommended by my oncologist). Since my diagnosis in early 2013, when I was 62, I have been through several ADT drugs, which all worked for awhile. I had my first chemo in May 2015. I have had 13 cycles of docetaxel, 4 of cabazitaxel, and now am in a clinical trial using docetaxel and Carboplatin along with rapamycin which they hope will make he chemo more effective. Only time will tell. Through it all I have virtually no side effects, and have only had pain when I am on a chemo break. My PSA was over 800 when I was diagnosed, only got as low as 73, and lately has been jumping all over the place, both up and down, most recently 3000.

    Two years ago I started practicing qigong, which is similar to tai chi, and I credit that with helping me remain pain free.

    My wife and I endeavor to keep our lives as normal as possible and often travel between treatments. I retired based on my doctor's strong recommendation when I was 64.

    I wish only the best for you and your father.

  • Thank you so much. He's my world and best friend. I pray for your continued healing and am amazed by your perseverance

  • Hi

    I am 66 and was diagnosed 5 years ago PSA over 600, Gleason 7. Seven bone mets, femurs and pelvis the worst.

    I joined the Stampede trial here in the U.K., taking Abiraterone with prednisone daily, and Zoladex implants every 3 months.

    Within 1 month my PSA was immeasurable, it has stayed below 0.1 ever since. My bone mets can be troublesome if I antagonise them, e.g. Sitting on a hard surface hurts my pelvic met or standing too long my femurs. Rib mets hurt if I sit forward doing repetitive work.

    I am totally convinced that a positive attitude is very important. Try to carry on working, although the hormone changes are really difficult to deal with.

    I still get hot flushes 5 years on, and now have severe muscle wastage in my legs, making me disabled, but so what, I'm still here.

    Good luck for the future.


  • I love your attitude. Very inspired. My dad ,like you, is not one to give up,,and my true faith is in his spirit and general positivity.

  • See the following great site developed by Chuck Maack with Us Too.

    Is there an Us Too support group in your area?

  • Clintmeek , I'm not sure, but I'll check it out. Thanks for taking the time to post. You and everyone that's answered gave me more hope and I am done looking at stastics, but not done learning. People are not statistics and that has always been my deep belief. But fear has gotten in the way of hope and positivity. I need to let go of the fear,as my dad is much more fearless than I am. Blessings and healing everyone. Graced by each reply. Xoxo

  • I know that I had minor toxicities compared to the vast majority. There is no doubt my response with low side effects is because I started chemo as soon as I found out that I had Stage 4. The mets had just became detectable within 60 days of treatment.

    Please stay on top of this disease. Early intervention and aggressive treatment outside of "someone's so-called conservative regime".....

    Gourd Dancer

  • Gourd Dancer, ty. You DEFINITELY Helped Me To Believe More IN The CHEMO Than I Did And IN My Father's Rush To Start. It sounds like he's right to ask to go on it sooner but it's in a few weeks after 12 weeks lupron, so that's 5 months post diagnosis. The first thing I said was , dad. Isn't that the most aggressive treatment you can do. He said yes and that's what he wants, so now I understand his frustration with the delay. Ty so much.

  • I've only been recently diagnosed and my cancer isn't advanced. Your father and I are both lucky in having a daughter concerned about our condition. You are in the right place to find support and I would encourage your father to access this site too if he is able. I'm not a doctor but I've been prescribed lorazapam, a sedative, as a sleep aid. If he is a US citizen then I'm hoping that reaching the medicare age of 65 soon will relieve financial concerns about treatment. I am over the shock of being diagnosed but this disease is a tough one that places a lot of decision making on the patient; it is good that you are doing the research and seeking the support to help with that.

  • WSOpeddie,

    Thank you so much, and yes I showed him the site, as he is looking for a better specialist. And he really hasn't been given his treatment options because 2 doctors immediately said, adt and lupron. They also said it doesn't really matter what you eat which is pretty obvious bad advice, but I'm familiar with western healthcare flaws from my own medical experience. I'm finding that at 40, I have forgotten so much anatomy and basic biology,that cancer alone is hard to "truly" grasp. It's the most feared powerful word, but even as a very smart woman I'm taken aback at the amount I don't know, humbling, to patient and family. I am glad you are blessed with a daughter, and it brought happy tears to my eyes, because you said it with such pride. My dad, a workaholic has been so caught up keeping up with enormous tasks at work, so exhausted daily esp. With exhaustion from adt and lack of sleep, that he has only researched the basics and is not yet familiar with all options , and even though I thought I had a decent handle on it, I fine thankfully it's an ever progressing field of knowledge that leaves more to learn and increasingly more theories to keep up with. Ty for welcoming me,and allowing me to learn and understand in a way that studies and stats never could, from the inside,from human experience ,from men whose courage I admire each time I read a post. The perseverence and faith in the community has given me time to breathe, catch my fears, and truly see that there remains hope upon hope for the future.xoxo blessings to you and your family

    Thank you everyone for your invaluable support