My husbands blood levels are not high enough for the lu-177 or AC 225. We need to know if there is anything left. He’s had all the standard of care treatments and nothing stopped this horrible disease. Hoping to have suggestions before we speak to the Dr. thank you for your help.
Options for stage 4: My husbands blood... - Advanced Prostate...
Options for stage 4
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joann48
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•
Hemoglobin must be 9 and platelets 150
Hi Joann I can only share with you that when we run the gamut of meds without success our oncologist says there are trials Have you asked about any trials? There is a Vision Trial running in the U.S. with immunotherapy meds Hope this helps. Prayers for you
If I may ask where do you get your DCA and fenbendazole?
I get fenbendazole from Amazon.com - smile.amazon.com/Panacur-De...
this is the 4-gram dose for big dogs - Joe Tippens said he takes the 1-g dose.
We have been trying to get on the vision trial. His blood levels of not meet the criteria. That's the problem
Thanks.
You talked earlier about trying Oliparib. Has he been on that? I'm asking because it can cause anemia and thrombocytopenia (low platelets).
Don’t know. He does not have Brca gene. He has RAD 51 B
• in reply tojoann48
I asked because there is a new androgen blocker approved called Darolutamide. It supposedly works with all know AR mutations. Right now it is approved for non-metastatic castrate resistant prostate cancer, but I would think you could still get it prescribed "off-label". Just a thought.
joann48• in reply to
I will ask Dr Tagawa thank you
I will ask. Dr Tagawa is his Dr
• in reply tojoann48
He can get a circulating tumor blood test that checks for AR-V7. Here's one option I know about:
genomichealth.com/en-US/Adv...
joann48• in reply to
Zytiga and xtandi did not work. Should he still have the ARV-7
• in reply tojoann48
That could be the reason why they don't work.
joann48• in reply to
Not sure what that means. Do you think he should have that test? Dr mentioned. Older drugs mY work and he also said platinum chemo
• in reply tojoann48
I would get the test, it's a fairly common mutation for prosate cancer that results from treatment.
joann48• in reply to
So the ARV -7 will let us know if he might be able to go back on ADT or possibly darulmide ? Or would it provide info for other treatments
• in reply tojoann48
Based on what I've read, Darolutamide would be an option for AR-V7 positive. Niclosamide is thought to suppress AR-V7, there are clinical trials ongoing, you could do a search on that. I'm not sure about the status.
How are you finding DCA? My husband did about 5 or 6 cycles of it (through Dr. Khan at Medicor Cancer Center in Toronto) but the side effects of the oral were too much. Are are cycling or just doing it straight?
I would also suggest trying FENBEN as ITCandy suggested. In the US you can get at 1800petmeds.com. Go to mycancerstory.rocks which is Joe Tippens' blog to learn more.
My husband is on week 13 and doing well.
Great that you're finding it helpful. If you'd like I can look through our "medical archives" for the protocol used.
Maybe u should just accept that your body has had enough and enjoy your time only u can decide what to do good luck
That is totally bogus! Anyone can beat this at any point, but understand the medical establishment will kill you unless you control the process and be your own health advocate. You should not be speaking words of defeat over men here.
It's not defeat it's there choice I lost my husband to this horrible disease in January this year so don't tell me what I should or should not say Biteson62
We are here for hope not to quit
How dare you my husband did not quit
You are missing the point. Men and interested parties come here for hope and to learn new things on how they can treat their PCa condition. If just riding off into the sunset was the option then there would be no need to visit this site. I have posted a lot of useful and proven protocol information. I have Stage 4 PCa as does my Dad. It is a mind game and encouraging someone to essential cave into the "inevitable" is to dismiss hope. You are angry about you husband's death and I do not see your original - or subsequent comments - as helpful. I'm entitled to express my opinion as are you. Suggest you end it and move on to another post.
Hope you read curious connector !!!!!
• in reply toBiteson62
Stage 4 and End Stage are totally different cancer animals. I hope you never have to experience what these ladies have/are experiencing. If so, I would hope you might be more sympathetic.
• in reply toWongle1
I don't know you but I will say, Your husband did not quit and neither is mine quitting as he nears the end of this 6 1/2 year non-stop treatment and travel for treatment/specialists marathon. Mine is dying with grace and dignity knowing that it is time. He is spending his remaining days at home, pain and end of life help with an amazing hospice team. With those near and dear to laugh with, share his life stories with and be surrounded by love. No hospitals, no doctors appointments, no one telling him he can't eat something. It's his time, he's decided and is at peace, as are we. As you said, it is an individual choice. Peace to you and your family as you continue to grieve. Do not engage with anyone who attacks or needs to defend. This creates more suffering and this disease causes enough of that already. I agree that the advice to not visit this sight may be a good one for both you and I. May you find light and love to carry you forward. And may those seeking to stay in this world through more treatments find the answers, comfort, and added years that they are looking for. Be kind, Karen
Wongle1• in reply to
Thank you so much for understanding I miss my boo every single day and yes I could have been selfish and made him carry on with treatments but it was not my choice to make he died with dignity and had just started with pain a month before he passed I would give anything and everything to have him back it's only 7 months on the 10th and it is killing me I know that we all need hope and someone to say we can try this do that but there comes a time with this shitty disease when you're man says enough is enough xx
Biteson62• in reply to
Amen
I know you are as my hubby was but at the end of the day every person must decide when they have had enough my hubby did clinical trials that could not help him but could help people like you in the future but he had had enough and he died with dignity and respect his choice he wasn't going to let aggressive prostate cancer or doctors keep him lingering he just went within minutes one day no pain I truly believe he did beat it in the end because he decided when it was time xx
Have you done gene mapping?
OK - will find and send.
Is that the same thing as genetic testing after biopsy. Yes no brca just Rad 51 b
Why don’t you post all his treatments and history in his profile like I did. It may help us help you.
My husbands treatments
Docetaxel 2016
Zytuga2017
Xtandi 2017 - 2018
Oxfigo 2018
Docetaxel 2019
Cabazataxel 2019
So he never treated his prostate? What was Gleason score and stage at biopsy?
Gleason 9. Stage 4. Matastisized to bones at diagnosis.
So sorry to hear!!! The only thing I can suggest is that he try estradiol patches as I have for systemic treatment ( see the PATCH trial in UK) and if his bone mets are few and in locations amenable to radiation zap with SBRT to each met . And get xgeva shots for bone protection.
Good luck.
Bob
Sorry no ideas other then those mentioned. Out of despair I am readying the fenben.
You and your husband have been through so many treatments in little time. Are you weary? (I am)
You have excellent doctors and perhaps you could put your trust in their advice or their referrals to ease your burden.
This would be my recommended protocol which I have done myself:
- Pancaur C (fenbendazole) might help. It's a dog dewormer with potent anticancer properties in humans. 1g dose 3 days on, 4 days off. Repeat. You might want to try this before the oleandrin as it is relatively cheap ($8/week).
- Oral Anvirzel (oleandrin extract) by Nerium Biosciences for 3 months and continue if results are good. Expensive!
- 4 to 8g daily Vitamin C split between morning and evening doses. Liposomal form easier on the stomach. Take with food.
- 1-2g per day Quercetin split between morning and evening doses. Take with food.
- 4-8g day of quality curcumin (not turmeric) split between morning and evening doses. Take with food.
- Vegan diet emphasizing greens and at least some raw portions like salad. Fish 1-2 days a week is OK if you must eat some meat. No refined sugar EVER and modest sugar intake from fruits! Fermented foods are great like cultured coconut yogurt, sauerkraut, kimchi, etc.
- Juicing greens and carrot
- NEVER take fish oil for advanced PCa, it can fuel high grade PCa.
- Minimize the use of any cooking oils. Small amounts of olive oil, avocado oil are OK but at high temps only cook with coconut oil to avoid toxicity of other oils at higher temps.
- Exercise almost daily at least 30 min. Brisk walking is fine.
If the PSA continues to rise after doing the above you need a very advanced protocol adding:
- Intravenous high dose vitamin C, 75g dose twice weekly to start dropping to once weekly. It is even more effective when coupled with blood ozone or hyperbaric oxygen immediately before or after the iv. Expensive!
- Detoxification of body using any of the following: intravenous glutathione, coffee enemas, hot epsom salt baths. The latter two approaches are dirt cheap.
Relax - Pray - Believe! The mind at peace and joy will bring healing. Easily said but hard to do, however I finally found it to conquer my Stage 4 PCa without ADT or chemo.
Blessings!
Larry
Can you tell me more about fish oil not being good for stage 4 PCa? Have not heard this.
Thank you!
The DHA in fish oil has been associated with high grade, advanced PCa in several studies. I was taking it while watching my PSA continue up so i have stopped it just to be cautious.
Please believe me end stage does not mean it is necessarily over. I have a friend who was end stage PCa, failed every kind of PCa treatment and had a PSA of 19,000. He could barely walk and was told he had 3 weeks to live. He is doing well now so message me if you wish to learn more. Blessings!
I did the DCA protocol for 6 weeks. That was 11 years ago. At the Start my PSA was 12, after I finished the protocol it was 8.5. From that point on I was on no standard treatment. After 3 1/2 years my PSA slowly came down from 8.5 to 7.2. Then began to rise. 3 1/2 years isn't bad for a rebranded drug. That is as much as I ever got from Zytiga or Xtandi.
The only problem I have from DCA is peripheral neuropathy in my feet. I have to take Mirapex and Gabapentin to get through my day.
If you mean Alpha Lipoic Acid, yes. But the neuropathy persists. I don't remember taking B1.
That would be great. But I am in Pennsylvania and my wife and I don't travel very well these days. So we don't get to Canada any more. My wife used to live in Kanata, Ontario.
Have you guys considered blood transfusions for him?
That's where your wrong this site has helped my husband for many years but it's not your choice he had enough of being a lab rat doing this and that and HE chose to say he had had enough and to do what he felt best not riding off into the sunset you silly man !
Somehow someone jumped on to my post and I'm receiving messages about my husbands illness. Please go back and re read the replies. My husband is end stage and it's a terrible thing to witness. I'm looking for compassion not anger
I agree as I said it is your choice as a family I have been through this a few months ago and as I said I wish you all well but at the end of the day as a family it must be your choice wether to carry on treatment or enjoy the time you have and as before good luck and I wish you all well xx
Here is the protocol that he used from Medicor - oral rather than IV as we were living in the UK and they would send us the medication. Hope you find it useful.
It usually takes 4 weeks for the benefits to show up in bloodwork
500 mg caps / 1 cap 3X for 2 weeks / then 1 week off
Additional supplelments
HonoPure (magnolia tree extract)
MCP
Benfotiamine
Alpha Lipoic Acid
Acetyl L-Carnitine
DCA Oral Treatment (no chemo): 1) DCA 500mg capsules, 1 capsule 3 times a day (=18mg/kg/day) for 2 weeks, then stop for 1 week. This is 1 cycle of DCA treatment. If there are no side effects, DCA may be increased to 2 capsules twice a day (=24mg/kg/day). 2) Take R alpha lipoic acid 150mg 3 times a day, benfotiamine 80mg twice a day and acetyl L-carnitine 500mg 3 times a day.
Watch for immediate DCA side effects like fatigue, sleepiness, reduced memory, confusion, hallucinations, depression, anxiety or light headedness. Stop DCA if side effects develop, and then re-start at a reduced dose when the side effects are gone. Also watch for more long-term side effects such numbness or tingling of the fingers or toes (both sides of the body), gradual arm or leg weakness (both sides of the body) or hand tremors. Confirm with doctor if these are likely DCA side effects, then DCA may be stopped temporarily and treatment plan can be revised. 4) Weekly blood tests: Complete blood cell count, sodium, potassium, chloride, urea, creatinine, calcium, magnesium, phosphate, albumin, bilirubin (total+conjugated), AST, ALT, ALKP, GGT, LDH, glucose. If tests are ok after the first month, they may be reduced to every 2 weeks. 5) Tumour marker(s) should be checked once at the start of treatment and repeated every 4 weeks: PSA 6) If DCA causes stomach upset or nausea, take pantoprazole 40mg daily (or similar antacid).
DCA IV Treatment (no chemo): 1) DCA 250mg/ml for injection, 18ml (= 4500mg or 53mg/kg) mixed in 50-100ml normal saline infused iv over at least 15 minutes, twice a week. If there are no side effects after the first 2 doses, DCA may be increased to 22ml (= 5500mg or 65mg/kg) twice a week. 2) Recommended with iv DCA: R alpha lipoic acid 300mg iv (or racemic alpha lipoic acid 600mg) mixed in 50-100ml normal saline infused iv over at least 15 minutes on the days of the DCA infusion. During preparation and infusion of lipoic acid, exposure to light should be minimized (for example by wrapping iv bag in aluminum foil, or by infusing in a darkened room). Watch for temporary fever/chills/shaking within a few hours of the infusion. Do not mix any other medications with lipoic acid or it will precipitate. 3) Recommended with iv DCA: high dose ascorbic acid iv (dose and formulation according to naturopathic doctor). May be given on the same day as DCA iv.
Recommended with iv DCA: high dose vitamin B1 iv or “B100” complex iv – e.g. B100 complex 1ml iv (B1+B3 100mg per ml, B2+B5+B6 2mg per ml). May be diluted into 10ml of normal saline and given by slow iv push. 5) Infusion order: DCA first, then lipoic acid, then ascorbic acid. Line must be flushed between medications. 6) Take oral R alpha lipoic acid 150mg 3 times a day, benfotiamine 80mg twice a day and acetyl L-carnitine 500mg 3 times a day every day. Ok to skip oral lipoic acid and benfotiamine on days of DCA infusion if the same medicines are given by iv. 7) Watch for immediate DCA side effects like fatigue, sleepiness, reduced memory, confusion, hallucinations, depression, anxiety or light headedness. Stop DCA if side effects develop, and then re-start at a reduced dose when the side effects are gone. Also watch for more long-term side effects such numbness or tingling of the fingers or toes (both sides of the body), gradual arm or leg weakness (both sides of the body) or hand tremors. Confirm with doctor if these are likely DCA side effects, then DCA may be stopped temporarily and treatment plan can be revised. 8) Weekly blood tests: Complete blood cell count, sodium, potassium, chloride, urea, creatinine, calcium, magnesium, phosphate, albumin, bilirubin (total+conjugated), AST, ALT, ALKP, GGT, LDH, glucose. If tests are ok after the first month, they may be reduced to every 2 weeks. 9) Tumour marker(s) should be checked once at the start of treatment and repeated every 4 weeks: PSA
Honopure Treatment: 1) Start Honopure 1 capsule daily at bedtime for 3 days, then increase to 1 capsule 3 times a day. Further gradually increase over 2 weeks to 3 capsules 3 times a day as tolerated. 2) Watch for side effects such as sleepiness, diarrhea or (rarely) upset stomach. Reduced anxiety is also a side effect
Wow, that is a lot of DCA. I did 6 weeks of daily DCA straight. Back then (11 years ago) the FDA was fighting any use of DCA. It was a rebranded drug then and hard to get. The US is really behind the times.
Yup - my husband had a good response to it in terms of PSA reduction - from 60 to 20 after 3 cycles. That was 2013. But the side effects were too much so he stopped and that's when he started Ben Pfeifer's protocol which brought it down so 1.21 after about a month. Apparently the IV form of it has a lot less side effects. We were too nervous about using something that we bought off the internet and wanted a DR overseeing it.
Biteson62 put some nasty things saying my hubby quit no he did not he decided he had had enough I thought this site was here to help but also to say it's ok when you have had enough of being prodded and poked and being hospitalised and to just be with your family because no matter what if it's aggressive prostate cancer it spreads and believe you me we tried and I was lucky to have my boo for three years after diagnosis some don't even get that xx
We most certainly agree just curios how long will be with us with no treatment
• in reply tojoann48
My philosophy is to exhaust all possibilities. The same calculation always applies: cost vs. benefit. Cost in term of side effects and monetary cost. Benefit in terms of extension of life and quality of life. The same evaluation applies, regardless of how advanced you are.
I can't really answer that I had over three years with my boo chemo sepsis radiotherapy but still got around then last August things started moving fast legs gave way pea doubling so fast phosphate levels high which meant it was spreading through his bones and that is what really annoys me it was in his prostate and lymph nodes and a few Mets on his bones I wish he would never have had docetaxil but it didn't work for his prostate cancer but I could and will work for many others he stayed with me until the 10th of January this year but was house bound and in a hospital bed from October but thankfully no pain but as I said it is different for everyone this is the problem with this horrible disease they have not got a clue because it reacts differently in every person so in one man it could be week's in another months in another years so many people have lost there men even without knowing they had prostate cancer xx
Oh Joann..... words are not enough....
youtube.com/watch?v=f8TflII...
j-o-h-n Thursday 08/08/2019 6:21 PM DST
I wish I had known you in the area. We could have met for lunch. I am in Lititz, Lancaster County. Oh well, maybe next time.
Hi Joann48,
None of us here could know your husband's full medical history.
But if his Psa was say 5.0 at least, then a PsMa Ga68 PET/CT scan should indicate if Lu177 or Ac225 is likely to work. Such scans indicate areas where mets exists and the SUV, ie, "specific uptake value" for the Ga68, from which the PsMa avidity is estimated. often the higher the Psa, the greater the SUV is for Ga68. Thus Lu177 or Ac225 should work. But where SUV is at a very low level then Lu177 of AC225 may not work, so then there's only chemo, or perhaps a few other things with unknown chance of working such as having DNA analysed for Brca1 or 2 gene, and then olaparib PARP inhibitor might be useful.
Most Pca treatment for most men is a procession of treatments, with Psa responding by going down, then up when that particular chemical is said to fail, then I've had quite a few ups and downs since diagnosis with an inoperable Gleason 9 in 2009 when Psa was quite low at 6.0.
But I survived to see the coming of PsMa scans and the Lu177 being available here, and luckily I had SUV high enough and no mets were found in CT part of scan which indicated all my Pca has PsMa avidity, ie, Lu177 would work if used.
Well, last year about this time I began Docetaxel with Psa 12.0, and after 5 shots it was 50, and docs declared chemo had failed, so referred me to Lu177 provider here in Australia and Psa was 25 when I began that in Nov 2018 but its now 0.57, trending down after last of 4 x Lu177 shots last May.
I'm also taking enzalutamide.
But my history will be different to many others. You need the best doctor you can afford.
I may need more Lu177 if Psa rises enough, and a scan suggests it will work. Its all very expensive, but Lu177 has seemed to kill Pca cells, not just
slow them down like ADT does.
Patrick Turner.
Hi Joann, I'm a newbie, so I don't have suggestions for you but I just wanted you to know that I'm sending some big, good energy and lots of positive thoughts your & your husband's way!
In solidarity,
Sunlight
Thank you
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