59yo T3b N1M1 diagnosted GS9 after a template biopsy (25 samples) where 13 had 4+3 = 7b and 1 4+5 =9 in April 2018. 1st PSMA that showed metastasis in bones and lymph-node. PSA 17.9
Treatment till now:
NO RP, NO radiation, NO ADT, NO Chemo
Radical life style change (food - whole food plant based - no oil, no salt, no sugar), lot of sport (running). After 3 months, PSA 12.5
2nd PSMA showed a general 30% cancer activity reduction overall and the lymph node considered in "remission" and MRI on the bones showed no detection of and met. Even a bone biopsy was negative (illium)
September very stressy month --> PSA from 12.5 to 18.3
Added supplements
October PSA down to 17.6
Started Iscador (Mistletoe) in November --> PSA 21.6 (in December)
Increased Iscador dose January --> PSA 31.1
3rd PSMA show increase in cancer activity and new signals in bones
Stop Iscador and more life style changes
From February:
New MRI doesn't show the expected mets at the bones
NO more urinary urgency, no more waking-up during the night, more energy in all senses. BMI 21.8, Fat 11.7%, muscle 41%
PSA February 28.4
Today latest result (4/19): 25.9; apart of PSA all other blood indicators are really fine (apart of copper and iron that are low and I will not increase them) (Cholesterol 105, LDL 35, HSCRP <0.1 to mention some)
Interesting that the PSA's decrease speed between the before last measurement and the last measurement doubled.
Very curious for the next measurement next month.
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puxi
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I just hope people don't see this and think that if they have bone mets, they can have some mistletoe and sprinkle some smiles around them and their cancer won't spread.
not to sound negative, but if your PSA was 17.9 at DX, and you are at 25.9 today, your "lifestyle" changes are not stopping your PSA from rising. This means no matter how healthy you may be eating and living, your cancer is growing and spreading.
I think the point here is that everyone has the freedom to treat this crappy cancer malarchey however they choose. All the best puxi and please keep us updated.
I understand that you want to avoid the side effects of most therapies for metastatic PC but your cancer is progressing (PSA 18 in April 2018 and 26 in April 2019). You could consider treatment with Lu 177 PSMA in Germany or Australia. This therapy is effective to control the cancer for sometime and it does not have significant side effects.
after the first treatment with Lu 177 PSMA four weeks ago, my husband had his second treatment last week in Vienna/Austria with Prof. Markus Hartenbach : minute-medical.com.
He had no bad side effects but he's still only a little more tired than before. Now we hope, that the PSA will drop down in a few weeks and then we'll see the result in two months, in June, with a GA-PSMA Pet-CT.
My husband had a Gleason 9 (4+5) and a prostatectomy in December 2018, a rising PSA after this, and in February 2019, six mets in lymphnodes were found by a GA-PSMA Pet-CT, but no bone-mets.
So we decided to start immediately the Lu 177- PSMA treatment and no hormone therapy at all. It was only possible with Prof. Hartenbach in Vienna, after having been recommended by Prof. Shahrokh Shariat (in Vienna), a very famous oncologist and urologist. We had to pay the treatments ourselves, it is very expensive, but of course, the life and the quality of life, is much more important than a new car....
I had my treatment with Lu 177 PSMA in Munich in 2016. I had only lymph node metastases and 1 treatment took care of all the metastases. This result was confirmed with a Ga 68 PSMA PET/CT done 6 weeks after the treatment and a second one done 2 years later.
Thanks for the information. Best of luck in this journey.
Yes, they put me in hormone therapy and i did not like the situation so I looked for alternative treatments andI finally got accepted for treatment with Lu 177 PSMA at The Technical University of Munich in 2016.
Two months after the treatment the ADT was stopped but unfortunately I could not produce testosterone (the Lupron put the testis to sleep) and the oncologists I consulted refused to give me testosterone.
Now I am in the first stages of castration resistant cancer and the plan is to do Ga 68 PSMA and when metastases are detected to treat them with radiation or with Lu 177 PSMA. We'll see what happens.
IMO it was very smart not to start ADT in your husband and see what the Lu 177 PSMA may accomplish. There are anedoctical information of remission of the cancer after a few treatments with Lu 177 PSMA when patients are treated very early.
Thanks , tango65, for your reply. So you'll have a Ga68-PSMA Pet/CT only every two years, and in the meantime do you also test the PSA every two or three month to see if it is stable?
I have a short PSADT so we measure the PSA every month. We got a Ga68 PSMA when the PSA got to 0.4 and it was negative. We are getting another Ga 68 PSMA when the PSA is around 1 (probably next month). We are managing all the studies by PSADT and total PSA values. If the PET/CT with PSA 1 is negative, we will get another one when PSA is 1.5. The idea is to detect the metastases when the cancer is oligo metastatic by PSMA studies and not by CT or bone scan. My oncologist proposed this plan and I decided to consult with Dr. Morris at the Sloan Kettering Center in NY and he recommended to do it and to treat the metastases with Lu 177 PSMA or SABRT and delay as much as possible the use of chemo/new anti androgens.
There is some information indicating that this plan can delay the progression of the cancer for some time:
I hope, you'll stay at the very low PSA level for a long time and you'll never need another radiation or Lu-177 treatment again! I wonder, from where the cancer cells could come back? Maybe, because you didn't have a RP but only ADT and thus, some cancer cells are now castration resistant and could wake up, as bacteria do that have become resistant to antibiotics? I wish you that it will never arrive.
Welcome Puxi... I would like to know if you have your cholesterol numbers from the beginning and if you could post them......your LDL of 35 is great and I wonder if your low cholesterol has slowed your PSA doubling time... There has been a post on statins and PCa recently and my post on Bempedoic acid, a cholesterol drug in Phase 3 trials, that appears to be an inhibitor of tumorigenesis... Are you on a statin?
The fact that your out 1 year without ADT and essentially your numbers haven't changed much or your scans is amazing...
Have you looked at your T values also during that time and could you post them also...
Your case is most interesting...
Thanks in advance for any additional info you can provide...
Dear NPfisherman, of course I can share with you all my values. I checked for correlations with cholesterol variation and I didn't find any with PSA. More with AP (kind of normal or?)
Yes, I started statin (Atorvastatin 20mg/day) but my Naturopath is really against. Also Cannabis flowers in a smoothie (CBD and THC content 1:1) and lot of other things. T increased a bit but around 18 nmol/L (look at the units). I'm trying to insert a picture with those values but I'm not able. It will be very tedious to copy all those values here. You can send me privately your e-mail?
You’re either a genius or you might be cutting your own throat . I’m not judging ..Only time will tell . Sure , you have a right to do what you want . I’m no expert , just another guy with APC.. anything is possible in this world . I hope that you do cure yourself . Stay in touch please. Good luck...
Hahhaha.... a genius ? Far from this. Killing myself? Well... if I arrived here with APC means that I've already done a lot to kill myself BEFORE already and yes, I do not believe that PC is a kind of bad luck but because I didn't hear my body correctly in the past. For me quality is more important than quantity; if I can have both, clearly better ;)... and, by the way, was not Leibowitz that told: "Any month w/o ADT is a gained month (before CRPC)"?
Another point that pushed me into this way was the observation that, once you enter in a classical protocol, it seems that your destiny (steps through this path) is already written for the big majority.. like as you do not have control over your body anymore and this I do not like at all. Of course, if the things turn bad, I can always try to do something because I'm still "original" without any irreversible "change" (I think is more a damage).
Hurry is not an allied in any kind of "fight" (but I agree, in some very special cases can be a necessity!) and if you keep your mind cool, you can figure out this easily if this matches for you or not.
You are in control of self . That is good. Follow your own drummer .. I didn’t really have that choice. For me treatments were do or die . All that I could recommend to some one not yet #4 or metastatic ,would be to not let it advance at all. I’d blast it ,in hopes for a cure. Once this gets hold of your jugular its then often then too late .. I heard of one guy that drank so much carrot juice that he said he cured his cancer. One in a million. I don’t want to hear that you avoided treatments then were swept out to sea by APC. I too was killing myself with self imposed stress and a bad lifestyle that ramped up APC and created this bad chemistry project. I had symptoms for years ... keep drinking keep partying , you’re all right.. I almost killed myself ...after dx complete 360 Flip holistic lifestyle...I’ve done tons of alt med too. Am I cured . Hell no ! There is no cure. But if I hadn’t made massive changes , I feel that I wouldn’t be here today. I wish you well with whatever you choose .. I agree that cool heads prevail. You will figure it out .. Good luck friend..
My question, as it’s my mental main gear with regard to this disease’ progression is what’s your testosterone doing? Perhaps you’ve discovered a holistic means of controlling its levels and effects.
Thank you Ralph1966. But far from a genius. Let see if I can contribute somehow with this experiment. After all a lot of us are doing this path also and sharing experiences.
I'll post all what I've done till now but please, remember that's over me. I'm convinced about the different reactions from different people (physically) using the same protocols (is already like that for allopathic treatments as we read here in abundance... apart of the timing where things start to stop working (in general). Take care and be confident!
Thanks for sharing your story. If nothing else, your are a bold experiment of 1 in the efficacy of lifestyle changes. There are frequent debates here about how much value there is in diet and exercise, and perhaps your experience can shed some light on the topic.
Thanks a lot for your friendly message. Indeed, soon or later I will publish here all what I've done with results (numbers) for the same scope as you mention. I also consider myself as a kind of testing mice... ;). Hopefully I'll survive longer than the poor beasts. Take care.
You did not give your age. Younger I suspect. Thank works is a you for sharing your pathway and for sharing how variable this cancer is. I do not agree that having PaC means you "did a lot to kill yourself" ... I do not think that Life/Universe/God/Gods works in retributional ways. Best to you.
For Some of us it’s purely hereditary . My father and his brother both had APC I’m the only one out of fours sons that got it. I probably was the highest strung of the bunch . I did feel that god put pc on me to stop my evil ways . It worked, got my attention now..
Hi, my age (60 next month) is written at the first line above... not the oldest but by sure not the youngest! Regarding the killing yourself, is mainly because life style and environment where in big part we have the choice on how to behave. Of course a minority of cases (according to USZ) are directly re-conducted to genes from relatives. Take care
I won't judge it but I certainly would not emulate it. Here is some content I have written in the past. This is not offered as justification for alternative medicine strategies in cancer treatment - after 30 years in healthcare I would never urge that. Complementary medicine is a different thing with IP-6 being the most important of the OTC counter anti-cancer treatments. Good luck.
Hi CalBear74... I think that Greger is a cherry picking guy. He tells sometimes the half true about the article that he is showing.... I don't consider him too much despite my wife always give a look to see if there are news...
Thank you for your post... but please change your ID.... Puxi, every time I see that word it sounds like something that I used to get once in a while.... Damn....I miss it....
I like your style and attitude. Until someone can show you any treatment you might undergo is going to add any to your overall survival, I say go for what you are doing. One thing however that is certain is that if you should undergo current SOC protocols, your QOL will certainly decline substantially with no promise that in the end you gained even a few weeks or months of life extension verses doing nothing at all. Yes I am aware of promises of Xtandi, Zytiga and other 2 nd generation ar pharmaceuticals. The jury is still out on actual overall survival benefit on metastatic, hormone resistant disease.
I myself was diagnosed G9, PSA 5.5, no
Mets some 14 years ago. PSA over 13 years slowly climbed to 70. 5 months later was at 374, felt then Mets inevitable, scans confirmed. Since then on Xtandi monotherapy, 6 sessions Taxotere, now 1/2 normal Lupron shots when Xtandi began giving up the ghost after 15 months after reaching nadir PSA of 3 and began to climb. Lupron failed immediately even though T was well under 20 which of course is well into castrate territory,
Declined any and all treatment of any kind for almost 13 years. QOL was perfect with zero compromises. Even when going Xtandi all systems perfectly normal except for fatigue. I had not further biopsy after initial , i had regular PSA’s, Pet CT’s, MRI’s, etc. One Pet CT disclosed a NSCLC lung cancer that I dealt with surgically 7 years ago with no radiation or Chemo. To date zero recurrence.
Yes sure these Mets piss me off and I don’t like what I am dealing with now. However no one has successfully argued that if I had submitted to SOC demands,,,some voraciously,, that my current position in this disease would have changed one iota.
Currently hoping/anticipating to be included in upcoming LU 177, PMSA, Keytruda trial commencing in very near future. If not Jetvana and perhaps Zytiga next on deck.
Yes I have failed Xtandi and Lupron, Zytiga likely to fail. However AR-V7 result was encouraging as I came back as negative, so certain Zytiga failure is not a given.
Again Puci, I admire your spunk and attitude. You have already displayed the cahones which is required which is the hardest part. The rest should be a walk in the park, no manner the ultimate outcome. I wish you the best. Listen well, but do not let the naysayers beat you down.
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My son’s Testosterone results:
Result of PSMA /PET/CT
PSMA Pet Scan results
Is my cancer castrate resistant?
Update on Lu177 mixed result
