Nothing left to do?: My husband was... - Advanced Prostate...

Advanced Prostate Cancer

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Nothing left to do?

Mauvemood profile image
27 Replies

My husband was diagnosed right out the door with stage 4 prostate cancer in March 2017. Gleason of 9, bone mets found. Cancer outside of prostate into bladder. Started on Lupron right away. December 2017 had robotic surgery to remove prostate and bladder reconstruction due to cancer in bladder. Had radiation treatments to tumors on spine, base of skull and prostate bed. Started on Taxotere in August of 2018 and stopped December 2018. Had several rounds of Cabazitaxil (spelling?) In January 2019. Scan all showing more mets and has moved into the liver. Started on Zytiga and not working based on tests. Talked with radiation oncologist in March 2019 and he recommended Y-90 but medical oncologist felt we should use treatments for prostate cancer so my husband went on Opdivo and Xtandi. I called the medical oncologist (MO) because liver Mets is getting worse in June and I requested that she do something for the liver and she told us she would put in a consultation for the Y-90. We did the entire work up and mapping of the arteries for the Y-90. The day of the Y-90 procedure, his bilirubin was too high and they had to cancel the procedure. MO AND Y-90 physician thought the Opdivo was causing issues with the liver enzymes so they put my husband on massive doses of steroids. The second day of steroids his bilirubin was down but day 4 of steroids it is the highest it has been.

So....here we are. Nothing has worked. Very frustrating and very scary!

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Mauvemood profile image
Mauvemood
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27 Replies
tango65 profile image
tango65

You could consider the clinical trials for Lu 177 PSMA treatment:

clinicaltrials.gov/ct2/resu...

or if it is financially possible to get the Lu 177 PSMA treatment abroad, in Europe, Australia or South Africa.

The treatment of the liver metastases with SIR microspheres could be done before Lu 177 PSMA treatment, if the liver conditions improve. Chemo with a taxane and cisplatin could be indicated. Provenge could be other possible treatment meanwhile treatment with Lu 177 PSMA is explored.

Mauvemood profile image
Mauvemood in reply to tango65

Thank you for your reply. We will talk about your suggestions when we meet with the doctor on Monday. Thanks again!

tango65 profile image
tango65 in reply to Mauvemood

Best of luck.

JamesAtlanta profile image
JamesAtlanta

Wish I was knowledgeable enough to offer you some profound medical advice...I’m sure our community will have some ideas.

But I can offer you prayers of healing and peace. I’m sure our other members will Join me in this, as well. You are not alone in this journey. 🙏

Please keep us updated. And Godspeed!

James

Mauvemood profile image
Mauvemood in reply to JamesAtlanta

Thank you James! Your response is very much appreciated!

Mets to the liver often have cancer that has neuroendocrine characteristics. If that's the case, a platinum-based chemo may be beneficial if he is fit enough for it. Something to discuss with his doctor.

Mauvemood profile image
Mauvemood in reply to

Thank you! I will mention this to the doctor.

🙏

Bedrich profile image
Bedrich

Hi, it's like I read my story .. A few years and I tried everything possible and nothing worked. The pain is becoming more and more unpleasant. I wish you good luck with your next treatment.

MiRob profile image
MiRob

Hi I agree with recommendations of Lu-177 (possibly in combination with AC 225)

Have your husband had his genes tested for mutations?

targetedonc.com/news/olapar...

Best wishes 🌈🙏

I suggest you try "alternate" methods and do not waste time going about it. Start with high dose Vit C via IV, and a strict raw food diet, with the immediate objective to get his immune system working again. Suggest 1 or 2 Xtandi capsules a day to boost the Vit C kill. Remember his immune system has to do nearly ALL the work of killing the cancer. If this is a new concept to you, then you know what went wrong. Sorry for the strong words, but I figure you are looking for fast solutions and no BS.

Grumpyswife profile image
Grumpyswife in reply to

Where do you get the Vitamin C injections?

in reply to Grumpyswife

I have no idea where you live. In the East, they are in general supply via clinics at around $40. In the USA, try a Homeopathic doctor for some names, or just troll the Internet. Beware of price gougers - $100 is a more than fair price for the supply and the job. Prices get inflated by "additions" like B12 etc. England and Europe are generally difficult, but there are clinics and doctors that will do them. It helps greatly if you know someone who can insert the IV, as this is usually the expensive part.

Mauvemood profile image
Mauvemood in reply to

Interesting! Thanks for your reply. I agree with what you are suggesting. Now only if I could get my husband on board.

in reply to Mauvemood

Perhaps members of this Forum can help you find help for your husband. Men can be very stupid about their health. If you disclose where you are, maybe some members know of "alternative" suppliers in your area. You may have to find some pretty pictures and success stories to give him a new interest and hope. "The Truth About Cancer" will give you some ideas on diet. I like them because they have much "for Free" and they only price their literature to cover costs. They actually give money to cancer research. There are many other good places, but they are also out to make a fat profit by selling their books or wares. Cancer is a rotten business and you cannot trust anyone - especially of it carries a high price tag (you know about this!). You MUST experiment all the time to see what works for you. We are all different, which makes all advice, no matter how well intended, at least partially WRONG until proved right. Let common sense prevail.

monte1111 profile image
monte1111

No advice. Hope you find a way out of the mess. Wishing you well.

Mauvemood profile image
Mauvemood in reply to monte1111

Than you.

Kaliber profile image
Kaliber

I can’t offer medical advice but I think I can say that most of us here understand your feelings and support you in spirit and kind.

I can offer the example of my friend Mark ... he has had PCa for over 20 years. He endured treatment after treatment and multiple surgeries and radiation and has been at the “ nothing left “ point several times in his life. His hair is gone, his nurdles are gone and he has steel spinal rods helping holding his head up . Also , once again, he is at another “nothing left “ point ...but he is still here , going strong and doing better than I am . It’s surprising how long PCa guys can hang there , plus new treatments are coming at a faster pace in the most recent years. Anything is possible. A large number of treatments in the pipeline and talk of PCa becoming like hiv .. a serious disease but not necessarily a deadly one any more.

Hang in there , I’m...all of us are thinking positive and compassionate thoughts for you guys.

Best wishes

Mauvemood profile image
Mauvemood in reply to Kaliber

Thanks!

Mauvemood profile image
Mauvemood

Follow up from my last post. Things are getting worse. PSA went from 14 to 73 in less than a month. We met with the doctor who said that there is basically nothing else to try that would prolong my husband's life. Did we want the rest of his days to be drug filled or comfortable. Liver enzymes are off the charts, kidneys are showing damage. Bone mets has increased. He will have a CT scan Thursday and we will go from there and probably do nothing. We are supposed to meet with the "Palliative Care Team" some time this week. We are taking one hour at a time, smelling the roses and eating ice cream!

Mauvemood profile image
Mauvemood in reply to Mauvemood

We are supposed to meet with Hospice this week. Not sure what to expect. My husband stopped his Xtandi last week. We saw some reduction in ankle edema. He can do some things for a few hours and then he has to rest. As far as his blood work this past week, some of the values slightly improved. What's with that? That is the only positive result we have ever received in this journey. His liver enzymes are still four times the norm.

I feel my husband's aggressive cancer is probably from his career. He was a paid fireman for 38 years and was a member of a FEMA Urban Search and Rescue team that responded to the World Trade Center incident. He spent 11 days working in the piles of dust and debris and underground searching for survivors. Thirty-eight of his team members that were with him in NYC have some sort of cancer. In my opinion, there are definitely environmental impacts to the cancers we are seeing today.

I just wanted to say just how much I appreciate this forum. The insight, information and compassion I have received has been very valuable. I read it every night before I go to bed. Talk to you soon.

NPfisherman profile image
NPfisherman

Anyone thought about Lu-177 under the "right to try" ??

journals.lww.com/nuclearmed...

erc.bioscientifica.com/view...

Sorry that you are facing this situation....

Don Pescado

Mauvemood profile image
Mauvemood in reply to NPfisherman

MO States liver enzymes too abnormal to receive this treatment. I do not know where to look to investigate this and did not see this info in the articles you posted unless I missed it. I very much appreciate your response. Thank you. I will ask the doctor.

NPfisherman profile image
NPfisherman in reply to Mauvemood

They could give a low dose and see how he responds...or give radiofrequency ablation first, see where his liver functions are, and then give the Lu-177 ...Ask your RO about radiofrequency ablation--see below:

ncbi.nlm.nih.gov/pmc/articl...

You have to fight for this stuff... the system is uncaring IMHO....It is worth a try I believe...

Best of luck....

Don Pescado

Mauvemood profile image
Mauvemood in reply to NPfisherman

Thank you!!!!

Shanti1 profile image
Shanti1

How about something like this: mathewsopenaccess.com/full-...

I know Dr. George Yu administers this treatment in Maryland and maybe some of the other study authors do as well, or you could see if you can get your MO to prescribe it. Along with the Cabergoline, clioquinol 3% cream 1g bid is also used as described here: ncbi.nlm.nih.gov/pmc/articl.... If your MO will write the prescripion for the clioquinol cream, Cape Drugs can fill it via mail order.

Sending prayers to you and your husband.

NPfisherman profile image
NPfisherman in reply to Shanti1

Agree with Shanti1....another solid idea...however, at a lower dose since cabergoline is processed hepatically...The MO must evaluate LFT's and decide--some info--see below:

rxlist.com/dostinex-drug.ht...

Best of luck....

Don Pescado

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