My father, 63, has metastatic PCa with MSCC, partial paralysis- seeking advice

salliexox · July 2017

Hi, my name is Sallie and I am new to the forum. My father (63 years old) was diagnosed two years ago with S4 Pca. PSA was 12, and after 8 months of radiation and hormone therapy, it has dropped below 1. The doctors advised us that the cancer wasn't gone, but it was at a managable state and we would just have to keep an eye on it. That was in April 2016. A month later he began complaining of severe back pain- all of his doctors, oncologist included, advised him that it was likely a result of stress and he should take OTC pain meds and get a massage. In July 2016, he called me one night in severe pain and I had an ambulance go pick him up to take him into the hospital. When they were ready to release him from the ER, he was unable to move/feel his body from the chest down. After scans were done, they diagnosed his cancer metastatic with mets on his spinal cord and ribcage, causing spinal cord compression and the paralysis. They did emergency intense radiation, and he spent over 5+ months in three different hospitals. His compression was relieved, and he has recently regained slight movement in his feet and feelings throughout his body.

In February this year, his PSA had jumped from 3 (when he was residing in the hospital on Xtandi, Xgeva and Lupron injections) to 8. They stopped the Xtandi and prescribed him Zytiga (+ Prednisone) in it's place since the PSA kept rising. He had been seemingly doing better and even participating in intense physical therapy to help with mobility increase. However, in May his PSA was up to 39. He was scheduled to do full body scans to reevaluate his condition two weeks ago, but was hospitalized after a UTI and severe chest pains. They did a chest CT and from that alone could tell that the mets in his chest had grown and a few had popped in his lungs as well. Needless to say, it was heartbreaking news.

Since the oncologist suggested that the only available option left was chemotherapy, and he refuses to do chemo, he has stopped all of the cancer fighting drugs/injections. It's been almost a week since he has stopped them and he is on at home hospice for pain management and sever nausea.

Sorry for the long winded back story, but my mom and I are looking into alternative options. He had been doing small doses of CBD oil, but we are looking into increasing this and adding any other natural fighters to keep him around as long as we can. Does anybody have any positive experience from natural treatments?

Thanks in advance for sharing.

Sallie xox

Max Former Hodgkins Stage 3 · July 2017

RobLee · July 2017

So sorry about your Dad

Sallie, sorry about your Dad. It sounds like they have already thrown everything at him to fight his PCa, but unfortunately it probably just wasn't done soon enough. The chemo would probaby be docetaxel, which can be very unpleasant, and given the extent of his mets would primarily be aimed at prolonging his life, though perhaps only by months. I am curently 66 and have PCa stage 3B (advanced, just short of mets) and have no personal experience with late stage PCa. However, my wife has recently had stage 4 primary bone lymphoma with a large painful spinal tumor, went thru chemo plus spinal infusions and is now in remission. She is really into alternative treatments, essential oils, healing stones (not "stoned") and made kale smoothies throughout her treatment. She used CBD oil for a while and felt that it did reduce her bone pain, but now agrees with me that the taste and inconvenience is not "worth it". Medical MJ is also legal here and she has used that a few times, but we agree that none of these remedies were likely to have been instrumental in her recovery. Today she makes only fruit smoothies and uses Neurontin + Advil for her residual bone pain.

Your father is certainly within his rights to decline any further treatment. If that is his wish, you need to ask yourself if you want to keep him alive for his benefit or for yours. As I understand it, bone mets especially near the end is very painful, but the hospice program will likely be able to do more to alleviate his pain than would CBD oil or any other alternative treatment. If anything, you could perhaps get your father involved in a support group while he is still ambulatory (assuming that he is).

FinishingGrace · July 2017

Very sorry

I don't know of any natural treatments that could be helpful. I wish I did.

My father passed away just over two years ago from bladder cancer. A misdiagnosis and subsequent delay in treatment cost him his life. All forms of treatment were ineffective for him. There is no doubt in my mind, and I believe there are studies that show, hospice care providing pain and anxiety management for the patient extends life for many.

Does you dad desire additional natural treatments? Hoping someone here has some suggestions for you. God bless you Sallie, your dad and your family.

VascodaGama · July 2017

Radionuclide Lutetium-177

Sallie,

I am sorry for the occurrence. Your dad's case is the story of many of us here that may one day be trotting the same path. Unfortunately, apart from chemotherapy there are no known treatment by experience that manages to prolong life in systemic patients without prejudice of their quality of living. Natural products do nothing but providing a sence that something is being done. This works like a mental relief but it can prejudice other health issues which indirectly could shorten the life of the patient.

In recent years, researchers have been investigating on treatments for systemic disease (sort of molecular treatment) which results presented some improvement on therapies with radiopharmaceuticals. That led oncologists in Germany to start offering a treatment with the radiopharmaceutical Lu-177 that have assured prolonged life in PCa patients. This sort of investigation is also on clinical trials in USA which I think that your dad should try to get involved. I do not know about limitations on the enrollment of newer patients (their present and initial status) but I think that you could try discussing it with his doctor or even go further and contact one of the facilities in Germany to inquire on possibilities for enrollment on a therapy.

Here are links regarding Lu-177, the therapy and contacts;

https://clinicaltrials.gov/ct2/show/NCT03042312

https://www.snmmi.org/files/FileDownloads/JNM%201-17%20featured%20article_Lu-177-PSMA-617%20Therapy.pdf

http://jnm.snmjournals.org/content/early/2016/01/20/jnumed.115.168443.full.pdf

https://csn.cancer.org/node/303830

http://onlinelibrary.wiley.com/doi/10.1002/jmrs.227/full#references

https://www.health-tourism.com/prostate-cancer-treatment/germany-c-heidelberg/

http://www.bordet.be/en/services/medical/nuclear/images/infoPatientsPRRT_e.pdf

https://www.ncbi.nlm.nih.gov/pubmed/23714732/

https://community.macmillan.org.uk/cancer_types/prostate-cancer/f/142/t/124437

http://www.imperialendo.com/for-doctors/lutetium-therapy/lutetium-therapy-patient-information-sheet

In your shoes I would provide your dad with something he always wanted but never accomplished. Probably a trip to Europe would make him to feel good and while on a tour he may visit a local oncologist consulting on the latest radiopharmaceuticals. Please note that once the bandit invades the lungs the condition of the patient deteriorates rapidly. Check constantly for any anemia condition.

Best wishes and luck in your dad's continuing journey.

VGama

hopeful and optimistic · July 2017

Hereditary and Familial Prostate/ Breast Cancer

Dear Sallie,

I am very sorry for the advance condition of your Father's prostate disease, and the challenges that you and your family have faced, and will continue to face.

Please note that the chances of males in your famiy to develop this disease, are more likely than the rest of the population, so please notify all family members, extended family included so they can be tested at an earlier age, and live a heart healthy life style; no meat or dairy.

Also, you and the women need to be tested for breast cancer, since studies have shown a correlation between breast and prostate cancer, so get those mamograms, and eat heart healty.

Best wishes to you and your family

H

Rakendra · July 2017

HYdrogen peroxide

sallie, my heart goes out to you, and I love your picture. these surely are desparate times. You might check out food grade hydrogen peroxide. Here is just one thread: https://breastcancerconqueror.com/oxygen-power-food-grade-hydrogen-peroxide/

Go on youtube and there is lots of information. I do not see that there can be anything to lose. In the meantime, celebrate the the time you have left. Start meditation -also lots of information about meditation on youtube as well. And remember that birth and death are not the beginning and the end, they are only markers on the way. Spirit is eternal, and goes from eternity to eternity. Celebrate it all. Best to you and your father. Love, Swami rakendra

Max Former Hodgkins Stage 3 · July 2017

Father

I tried writing yeaterday, Sallie, but something was wrong either with my computer or the system, because all that showed was the idiotic little square that is with my post above; I could not delete it either.

Like Rakendra, I must complement your photo. Your father looks like a prince and gentleman.

You also mentioned your mom. The following song was written specifically about the relationships that the dying have. Perhaps it will remind you of them and their time.

Clinically, his situation is bleak. He is in the late autum of his time in this life. And these few precious days I'll spend with you; these precious days, I'll spend with you.....

max

https://www.youtube.com/watch?v=S9nSgMwtkK0

My father, 63, has metastatic PCa with MSCC, partial paralysis- seeking advice

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