Thank you for all of you who battle with such courage and are so willing to help others keep fighting. Small background and then I have a question:
My Dad is my hero- that comes WAY before this cancer battle as what defines him to me is his selfless love. I am a single Mom to three children and my Dad saved our lives- literally, as I left a domestic violence situation and went to a shelter in 3/17 after 16 years of marriage. The legal battle still goes on but we are protected. More importantly, my Dad has been EVERYTHING to my children through this- though he is battling prostate cancer diagnosed in 11/7 stage 4 gleason 9 mets to bones, he sacrificed his own retirement to live in Florida with us a good part of the last two years to help us, to love us, and to live out the love of Christ to us by tucking his grandchildren in bed every night, sitting with them when they were scared or could not sleep, going to their performances and races to cheer them on, and being so much of what they needed through all of this. I know that was long, but I wanted you to have a glimpse of who he is and why I so desperately want to help him beat this cancer back down again.
My dad is 83, in great health other than the cancer. He began his treatment with Lupron every 6 mos, Zometa every 3 mos and Zytiga. We got about a year out of Zytiga and he moved on to Xtandi.
He had a blood draw 6/19/19- PSA 7.196
6/19/19 Alkaline Phos 78
8/19 PSA 12.5
9/10/19 PSA 16.049
He met with the oncologist 2 days ago, and he said with the rise in PSA, there is nothing left for him but clinical trials or experimental treatments. The Dr. also said radiation would not work for him because of his age, that basically that would kill him. Umm..okay? I told him not to worry, that I would post here and ask for others' experiences as I have before because I know that more can be thrown at this than two medications. They told him all his bloodwork looked good except PSA. I have a friend who is an oncologist and she said Jevtana would be her next line of defense.
Here is my question (FINALLY, right?)
For those of you that perhaps had a similar protocol, what were your options after Xtandi? Even if you have not had the same experience, I know many of you on this board are very well read in all the latest advances. What would you think should be our next step because he wants to fight, and I am just really upset, frankly, with that oncologist because my Dad was so down and defeated sounding when he called me. I always tell him I have not yet found an expiration date on him.
He has lost a lot of weight just because he does not feel like eating- his fighting weight was about 180- he is at 168 right now. He has hip pain and sometimes he says he feels like his hip does not want to work, but that is interfering with his golf game.
Many thanks in advance for any advice you might offer. He is in Ohio, and I am in Florida, so I am not able to be at appointments with him. I will give him any and all information that you may be able to share. Blessings to all of you bravely fighting this fight,
Lora
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missh2
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Sounds like your dad is truly a wonderful man and I hope he can find treatments that will continue to work for him.
I would find another Medical Oncologist because the one he has is clearly wrong when he says there are no proven treatments available. Try to find one that specializes in prostate cancer.
I can only tell you what I would do in his situation since I'm not a doctor. First thing I would do is get imaging done to see if there has been progression because he wouldn't change treatments based on PSA alone. If his weight loss and pain are from the cancer, I think the chances are fairly good that there is progression. Imaging is still important. Yes, they can't give him radiation everywhere, but they might be able to irradiate some individual mets for pain relief if they know exactly where they are.
The next thing I would do is get molecular testing done on the tumor, either through a tissue biopsy or a "liquid biospy" of circulating tumor cells in the blood. This should be done to see if there are mutations that can be treated such as BRCA1, BRCA2, ATM, etc. If he has a mutation, he may be able to be treated with a PARP inhibitor.
If there is progression and he needs another treatment, I would go to first-line chemotherapy Taxotere (Docetaxel), then if that was not effective, second-line chemotherapy Jevtana (Cabazitaxel). These are both proven treatments. After that there are some experimental treatments moving toward approval such as LU-177 and AC-225 which are radioisotopes that target the PSMA from prostate cancer cells. And of course there are also clinical trials.
If you are in a position to pay for treatment, I just returned from Homburg Germany where I received PMSA lutetium/actinium therapy for metastatic Prostate cancer. It is not a cure but he has great success with remission, and is the new standard of care for ADT resistant prostate cancer in Germany. Dr Ezziddin is one of the pioneers, and one of the two to use tandem therapy that I know of, the clinic is excellent, the staff competent. The mostly speak English.
I didn’t hesitate... the stuff works. Homburg is a great treatment center... I opted for tandem therapy. Tuesday I had an IV for the PMSA PET scan ,Wednesday I had two injections through the IV , released on Friday back to USA Saturday.
A little less than 2:1 lu:ac. Only occasional dry mouth. I’v3 forced water and used hard candies or gum to keep the kidneys and salivary glands rinsed ...
With age you do have to be careful of stronger treatments like chemo and radiation. My dad had colon cancer and he died last year at 82. It wasn't the cancer that killed him, but the chemo they were giving him which was way too strong for his age.
Weekly chemotherapy is often a good option for elderly patients and has been effective. The complications are less with 1/3 the dose, recovery is faster, and it's not as big of a commitment if you decide you want to stop.
God Bless you, your Dad and your children. I would heed gregg57's advice and try to get him to see a "Medical Oncologist who specializes in prostate cancer" asap. Your Dad is a gem... (keep posting here)
Thank you so much! He is a gem! Guess what I discovered when I researched his current doctor more? He is a medical oncologist hematologist but is not listed at all as specializing in prostate cancer. I found a doctor who is listed as a prostate oncology specialist, and he is in my Dad's insurance network. I am going to talk to him about setting an appointment to also get an opinion from him. Many, many thanks!
That's good news... Hopefully he can get an appointment asap. Suggestion (and only a suggestion). If you wish on a "future" post (not today) you may want to mention that new oncologist's name and location and ask if anyone here knows him/her. I understand that some people are reluctant to divulge their doctor(s)' name(s), so it's just a suggestion (it's all voluntary). Tell your Dad he's lucky to have you and vice versa. I assume he was born in 1935 or 1936... those were the years when they "made" good babies. Bless him, you and your children. BTW where in Ohio is he located? Also if possible get him to drink Malted Milk (Shakes with ice cream ) daily if he wants to gain weight.
Good, Tell him to make some for me too... I love them with chocolate chip ice cream... I'm in NYC but I know a little about the Canton/Akron area. New Philadelphia and Dover Ohio... Regards,
Good Luck, Good Health and Good Humor.
j-o-h-n Sunday 09/15/2019 6:39 PM DST
Some very good advice from others here. Especially the warning that full strength chemo is not a viable option.
The first line of defense is the body's natural immune system - that has to do 99% of the killing of the cancer. Medications only help that process. If he is not getting a decent diet and added vitamins and minerals, that could be the biggest immediate problem. Alas you are too far away to make him smoothies. But he can avoid any sugar (just about everything in a bottle, box, or can has sugar in it - especially commercial fruit juices are poison), and he can stop eating any wheat (which turns in sugar in minutes).
I have had success (22 months now) by using weekly 25 grams of Sodium Ascorbate via IV with Xtandi. The Xtandi does not kill any cancer - it just blocks "food" getting to the cancer (and that slow;y become ineffective). But Xtandi, by an unknown process, even in very low doses, weakens the cancer cells so that Ascorbate via IV kills the cancer cells. I got a 95% reduction in my PSA over 4 weeks when I started. If that works for him, he can cut back on the Xtandi to "low dose", and that will help his weight problems considerably. If your Google "IV Vitamins in Ohio" you will see several places that can point him in the right direction. He will have the answer to its effectiveness in 2 weeks. If it does not work, no harm done - but I would be very surprised it did not turn his life around like it did mine.
David, yours was the most amazing info! I did a lot of reading and found a lot of research that supports exactly this approach. Thank you so much as I had no idea! I am currently looking for infusion centers in Ohio near my Dad that would be able to give him the IV treatments.
😢 sounds like my hero as well. My dad has stage 4 at 87 , they have him on zytiga as well. The oncologist said at his age he was not a candidate for chemo or radiation. They did put him on prednisone that has stabilized his weight and made him eat. His cancer is in his hips as well so is using a cane and walker most of the time. Never give up. Listen to your friend, have dad fly down and see the doctor if he can’t get anything done at home. Love your hero as he is a special guy. ❤️❤️❤️.
What part of Ohio does he live in? If close to Michigan border, U of M has great cancer center that my husband is seen at. Of course if he is a buckeye fan that may be the hardest pull to swallow😉 agree totally with gregg57. Good luck!
He is in Northeastern Ohio, Akron/Canton area. I am guessing the Buckeye Tervis Tumbler in my cabinet right now might indicate the issue there could be with Michigan, but I am sure he would be willing to cross the border if we could find that they would accept his insurance. Thank you so much for the suggestion and prayers for your husband.
We are not to this point yet. I feel your frustration though. I see what we might face. It really is a fight. Thankyou for the insight. Stage 4, metastisized, radiation for now.
Dad got a personal call from the oncologist yesterday to have an appointment with him tomorrow morning at 9:15. I typed up an abbreviated list for my Dad to discuss with him. I will let you know when he is back from the appointment tomorrow what next steps are. Thank you again for the invaluable advice!
Thanks so much for checking in on us! So, dad tried to discuss all the feedback here with the Dr. and basically the Dr. blew him off. Dad was advocating for iv sodium ascorbate with xtandi first but also asked about the treatment in Germany, LU 177, jevtana. The Dr. Said no,won't do anything with vitamin iv therapy, that's not proven. Then said no to Jevtana, said it's too strong, acknowledged that he knew about LU177, and then he ordered a bone scan and ct scan that will be done tomorrow as well as genetic testing on the tumor (which is another thing my dad asked about.) I've since read that the genetic testing should be done on a new sample not the original tumor since things can change so rapidly. Is that correct?
Then the Dr. Said he'd see what the results of the tests are and possibly put my dad into a study at Cleveland clinic. He did not say what. My dad also told him that I said, and I did, "don't make me come up there!" Basically, I am even more upset with this doctor than I was before blowing my dad off like that. I get it, punch your time card and get in and out in 10 minutes. What I want him to know, and I'll say it to the doctors face if I get the chance, is that every room that you punch in and out of represents a family with a story and someone who is very loved and lives and dies on YOUR words, doctor, to give him hope. My dad is once again discouraged.
I told my dad yesterday that my counselor, Jessica, who I have been seeing since 2017 when I went to the domestic violence shelter, is praying for him. He said, " Well, shoot." And his voice broke. I just told him we will keep working, and I did look up the doctor mentioned here at Cleveland clinic who looks like a wonderful oncologist.
Right now, I am sitting outside an iv therapy clinic in Florida where I live. My dad is planning to maybe come down here next month to start seeking that sodium ascorbate iv therapy to see what that does. I am going in to ask them some questions now. I still refuse to believe you can only throw two drugs at this thing and that's it. I have some questions for you all and will make a new post if needed to get some responses:
Are any of you over 80 years young and have had chemo, jevtana or some other form over 80 with success?
Anyone over 80 years young follow a similar treatment plan and what did you do AFTER xtandi?
Keep fighting!!!! I'm going to look into some boxing gloves....
My dad is 81 and everything we have tried is failing so now he doesn’t know if wants to do chemo and is unsure? His PSA fluctuates some tests it’s high some it’s low so I really don’t know what to make of this scans show it hasn’t spread so at this point I’m speechless good luck
To all PC patients and caregivers: the biggest lesson I have learned since my diagnosis is to be ready willing and able to change doctors early and often until you build the right team. My first 9 doctors never mentioned diet although I was 100 lbs overweight. I'm now on doctors #12 and 13 at 2 hospitals. My first 9 doctors each only knew one treatment, so that's what I got. By changing doctors I'm now on my 24th year since diagnosis. Your Dad is lucky to have such a good support team. Keep the faith!
Also, just wanted to add that I can still get him to laugh. I said, dad, dont do anything crazy and hang a bag of orange juice from a coat hanger like you're in a movie and try to do it yourself! He laughed.
So, my Dad has now had a new bone scan which showed additional areas of involvement in the bones which we expected, shows both hips, the spine in spots, femur, etc. He also had a CT scan but still no result from that yet. So, HALLELUJAH, his oncologist listened to us (okay me by proxy as I was not there, I'm in Florida), and referred him to Dr. Gilligan at the Cleveland Clinic. Thank you to the dear brother here (Mr.Bill2) who made the recommendation. Appointment is set for 10/30.
Though the oncologist said he should stop Xtandi, Dad told him he wanted to continue it until he sees the oncologist at Cleveland Clinic because he plans to start the "orange juice" (That's what my Dad is calling the sodium ascorbate) next week. (Many thanks to our brother DavidHealth for that recommendation). He will have three IV sodium ascorbate appointments and got a lab script from his oncologist to see if that affects the PSA number.
In other news, I found out two days ago that my home is now in foreclosure. I knew it would happen, but it's still tough to take. Hoping that the divorce will finally be final in December. But you know what? God works all things together for good, so I am today really UPBEAT because my Dad has HOPE again. Thank you, dear brothers and sisters in this fight- you have no idea how your help has been an encouragement to me and my Dad. My oncologist Mom friend told me that there is a new drug out there ERLEADA. Does anyone have experience with it? Keep fighting!
I don't know since not a provider. 8 years out on lupron and xtandi. Supplements like zyflamend, also celebrex, disipramine ( antidepressant) D3 and calcium, beta blockers , other homemade capsules. Stage 4,Gleason 9, psa 31. Right now .02 , mets are not traceable. Good luck.
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