In early 2017, I took a big bet. I suspended normal cancer treatments, in order to preserve my eligibility for a very novel phase 1 clinical trial. Initially, I didn't qualify, but they agreed to modify the trial to make me eligible. That process took a while, so we didn't get started until late 2017. In the meantime, the volume of my cancer had increased tenfold, causing compression of my epidural nerve and requiring both surgery and radiation to my upper spine.
The clinical trial involved a bone marrow transplant and temporary high doses of testosterone. The testosterone only helped for a few months. Now that my immune system is more than 95% switched over from the old to the new, I can confidently say that the new immune system hasn't helped me at all. In the middle of 2018, my PSA doubling time returned to my usual two months.
In October 2018, I started chemotherapy. It has reduced the symptoms of some of the complications caused by my various metastases, and it has reduced my PSA velocity, but my PSA is still rising. Today, I have an appointment to discuss participation in the VISION clinical trial, featuring Lutetium.
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Beauxman
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Good luck....hang tough....you may wish to look at the NCI Match trial...it involves gene mapping and treatment based on the outcome of that mapping. It is the first trial listed---check locations---thanks for the info about the bone marrow transplant...
Thanks for this. Let’s hope these remain open and that when Xtandi is discontinued my husband will qualify. Our hospital is listed. We’ll check with our MO. Mrs. S
That sucks that the transplant didn’t work. However, I’m happy to see your still around! When I hadn’t seen a post for 2 years I figured you hadn’t made it past the transplant. My husband was dx in 2017 at 47. He had an autologous transplant in 2013 at 43 when he was dx with a blood cancer, multiple myeloma. That cancer has remained inactive since transplant. We have 2 boys, 5 and 8 years old. Mike has gone through Docetaxel, casodex, zytiga( couldn’t tolerate) and enzalutamide since September but I think it’s failing. We are looking at the Vision trial as well.
Lynparza worked for me (BRCA mutation) for about 8 months. The cancer that doesn't express that mutation has blossomed. Keytruda did not work for me and didnt even consider Provenge. Am thinking my cancer is too aggressive and that provenge would not work.
Hi Bill, you mentioned Lynparza stopped working for you after eight months. What program are you on now if any? Or what is the next step for you? I've been on a combo trial of Lynparza and Cederanib for the last six months. It was working well except for the miserable side effects that came with it, but after my latest scans the tumors have not changed since the previous scans. My MO again mentioned Jevatana, but I won't even consider chemo again. Take care Bill
Hey Ralphie. Not on anything new yet. Doc is talking about chemo again and I dont want to do it again either. Glad to hear your scans were unchanged. Fingers crossed for u
i think it CAN be dangerous, and it should only be attempted in carefully controlled clinical trials. It is too early to tell in which patients it may have some benefit and in which patients it may make their cancer worse. Here's what I know:
I noted from your history that you have experienced a dramatic rise of your PSA from the 150-ish range to around 1,600 in a relatively short period of time. Would you care to share anything about the emotional & psychological aspects of that, and how you may to coping, or getting some support during that period of time?
(A while back I lived with a PSA rise over a period of months from 1.0 to around 95.0 before I eventually started Xtandi .... and it was really nerve wracking for me to see the progressive PSA rises as I did some consulting and arranging for "next" treatments. (My original PSA was around 5,000 so I knew I could be alive with a really high number like that, but still, ... ))
Just curious. What has worked or not worked for you and your spirit during this time? Do you have anybody with whom you can express and share what's most concerning for you, right now? Etc.
Every time a treatment fails, from 2014 to 2018, my PSA velocity returns to its default two month doubling time. This recent increase is no different. I've known since 2014 that this disease will kill me, but death has never been imminent. Somehow, I still have no metastases outside lymph and bones. When that changes, I'll have to adjust my expectations.
I regularly attend a local support group for young people with cancer. That group addresses emotions and the possibility of early death more than any local prostate cancer support group I have attended.
Thanks for sharing. I've also attended a small facilitated weekly Cancer Support Group for several years, mostly for people with advanced cancers of all types. Most of us are usually a bit older. The Group also addresses emotions and other "deeper" issues arising from going through tougher, later treatments toward the end-of-life with advanced cancer. With time, some group members do get sicker, and die. The on-going sharing and supportive interactions of group members and their caregivers (survivors) is very good... even if challenging at times. Fears, tears, cheers, angers, hopes, disappointments, hugs, thoughtfulness, laughter, .... you name it. Overall, a good thing.
you are the perfect example of BAT is total BS...may work for a short time but eventually results in a very aggressive cancer. I just read where BAT is linked to liver metastasis. Good luck to you.
Can I ask how you are feeling physically? What is the next step for you at this time? I'm on a clinical trial right now that according to my latest scans the tumors have leveled off. I've been on for six months now. My MO mentioned Jevtana again but I won't go thru another six rounds chemo. It's like my last option left. Well, I wish you a miracle. Prayers your way.
Ever since the bone marrow transplant, I have had very slight nausea, most of the time. A bad smell or taste can send me over the edge, to make me vomit. Overexertion is a problem at any time of day, but especially in the morning. I have to move slowly and avoid standing too long for the first hour in the morning, or I will throw up. If I feel worse than usual, I will take 4mg or 8mg of Ondansetron, and that will prevent an episode, if I didn't wait too long before taking it.
Hey Beaxman, good to hear from you and I'm sorry it didn't work out. You were very brave going through the transplant as I recall you said there was a 10% chance of death in the first 6 months. Keep fighting hard. I'm also looking into Lutetium 177, but now that my cancer has become small-cell, it may not work for me. Cheers Paul.
from this group of men i must be the luckiest guy around. I had a lupron/eliguard shot 3/2009, then radiation,3 years 2012 another eliguard/lupron shot, 2 years another eliguard/lupron 2014 oh some meds i don't remember,started zytiga and prednisone another eliguard/lupron shot 7/25/17. given 31 days of radiation for lymph nodes in the groin. bone & ct scan same year.started provenge 9/2018. my psa was as high as 60 prior 11 going back in for bone/cat scan and see where my mets are. had 2 in the groin,one in the aorta arch and a (leason in a rib). its been 10 YEARS
Hi podsart. I am considering Lutetium 177 Dotatoc (see: healthunlocked.com/advanced.... I am also possible getting Pembroluzmab (Keytruda) with chemo early next year as it has shown promise with small-cell cancers. I believe my small-cell is treatment emergent, but my doctors haven't owned up to that.
It is sad that the bone marrow transplant did not work. But from whom did the bone marrow come from? Would you not question whether the donor was likely to give you an altered / new immune system which had the ability to respond to your cancer by trying to kill it? Methinks those doing such a transplant would need to know that a favourable outcome was highly likely, which IMHO would involve them examining Pca DNA and that of donor, and maybe trialling some donor cells mixed with your Pca cells to see if donor cells attacked your Pca, instead of shaking hands and saying "Hi pal, hope you are well" which seems to be how my otherwise good immune system is greeting my Pca cells as blood circulates through tumours. Would not donor cells attack many of your healthy cells? h
Without being able to predict the behaviour of cells, methinks all tinkering with immune systems is very much experimental, and despite a huge amount of research now on immune therapy, results are not astounding for enough patients to allow authorities to autherize IT. During last year, Marsden Hospital in UKgives mean life extension of 4 months, but a few men have not had Pca recurrence or continuance for 9 years; they were amoung early trial subjects.
I guess you deserve a medal for bravely being a patient in a trail like yours.
After all forms of ADT failed, my chemo also seemed to fail and I had my first Lu177 shot 5 weeks ago with next on 4 Jan 2019. From when I quit chemo to
just before first LU177, Psa dropped from 40 to 25, and 5 weeks later it is still 25, so it may have dropped lower then risen again, and may be rising and I can only hope it falls later or after 2 x Lu177, or maybe 3 x Lu177.
Lu177 seems to have the least toxic side effects for what is a miniature form of Atomic Warfare, involving ionizing radiation. Ac225 is touted as more effective with less doses but getting a dry mouth and dry eyes is normal, while maybe yes, maybe no with Lu177.
My side effects from first Lu177 were masked by lingering side effects of chemo which I stopped only 1 month before, so I don't know what to expect for next Lu177.
I am 71, and today I cyced 96km with last hour in 30C, and I overtook a number of other cyclists. But I do get overtaken sometimes, usually by blokes of 30, with that smug look on face, but today, I was passed by a girl who looked like Miss Sweden. But little do they realize I am an Old Bar Stud, chemically castrated for last 10 years, testosterone free, replacement knees, glowing in dark after radiation, and bloomin 71 years old, and so their passing me is only a false boost to their ego.
I smile on this charade that goes on during my rides around the town and at least I am out there doing something, not too worried about losing a battle with cancer if that is what my destiny is, despite what the good doctors can do with me. There are thousands of other places around the world where no modern medicine is practised and many ailments less than cancer are a death sentence. So take part in whatever trials or treatment that is available, keep an open mind, and always remember that your response to the same treatment I might get may be different. But I have witnessed Lu177 trials at Peter McCallum hospital in Melbourne in 2016 onwards. Most men get a benefit. Lu177 was first tried in Germany and they say mean extension of life is 14months. You might get much more, or less. My doc handling Lu177 says maybe some men with low Psa get more benefit than those with high Psa, ie, the higher the tumour volume, the more work for Lu177 to do, and it can't succeed fully, and so more survivor cells remain, and with mutations to allow them to grow to be untreatable with anything. I have almost no Pca symptoms despite being riddled with bone mets. So QOL continues, and for how long I have no clue.
For Lu177 to be effective, it seems your Pca cells need to be "PsMa avid" ie, the ligand chemical can gather radiactive gallium68 at cancer sites to get a good PET scan and then LU177 should also gather at tumours but it is vastly more powerful than gallium68 used for scans. Google Theranostics Lu177 and you can read a lot which many doctors don't have time to tell you.
So far, I have no fear of Lu177, but if Iget more and more, and if I lived long enough, maybe I get leukemia but at 71, I've already had 3 score and ten years.
Hi Patrick. The two sets of statistics from the Royal Marsden that you quote above have time frames that are very wide apart. Why is there such a disparity and why haven’t they majored on the trials that provide the most benefit in terms of longevity? Is this only Marsden Immunotherapy trials you are talking about or are you including other types of trials there?
I am not fully aware of what Marsden Hospital has achieved with IT.
I would not know any more than what is probably available to read at their website. The little I did read was in a newspaper here and then that seemed to agree with the website and my conclusion was that maybe in 5 years they'd have some reliable therapy, ie, they ain't got nuttin ya could get ta morra if ya needed it. So it seems a long way off. But the prospect of good IT is beguiling, and many researchers are well fascinated by possibilities.
A great reply, as usual, Mr. Patrick Turner. Especially liked the false boost to ego part. But admit it, you let Miss Sweden pass you so you could check out her ass.
Well yeah, goes without sayin' but then she went past so fast that I was not dragged along behind her, helplessly hooked onto the smell of hot pussy.
Apologies to all dear lady readers who might think me be uncouth, but you may feel safe because Aunty Destinee arranged for doctors to make me become completely unable to function sexually, because she knows that women who cycle know that blokes without a working Rodger ain't gonna give any satisfaction.
The idea of using a strap on really does not do the Real Thing.
So the girls can think, "smell away old fella, youse ain't worth slowing down for".
Why did they give you a bone marrow transplant. That's where your blood cells are produced; Was there something wrong wit your blood? The matches for transplants have to be very close; it's rare when it isn't siblings providing the transplant material. And it must have worked since you're still around. Your bone marrow is obviously producing blood cells. This is interesting; I'd like to know more.
It was a clinical trial, testing whether a female immune system would be more aggressive towards prostate related cells. It succeeded, in that I have a new immune system. It failed, in that the new immune system isn't fighting my cancer. clinicaltrials.gov/ct2/show...
I really hate to see when prostate cancer has come into the lives of such young persons as yourself. I was going to make a joke as to whether your picture was before or after the phlebotomy but after looking at your history I am sure you have already had a humorectomy and are not really in the mood for laughter. By the way, your flying lizard banner actually made me sit back in my chair when I first saw it. I hope you are still making good times and good memories. That's what it's all about. Here's wishing you luck on getting into the Vision trial.
I’m really sorry to see this. I have been following your story and know how much you went through to get to (and through) the BM transplant. Sending good vibes for strength and luck in finding the right trial.
It took lotsa courage to do what you did and I congratuate you and your will to defeat this disease. Your act may help others who may benefit from what you did. You are a hero
even though you might think so.I admire your courage. There might be another way for you to try.
I did ADT x 3 but my cancer wasnt very aggressive and my doubling times are not an issue.
My PCa seems to remain confined to my prostate. This is after 14 years.
But I still feel on the hook with it. Good luck in your treatments.
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Low testosterone / PSA failure / risk of death.
Is this pointing to cancer becoming castrate resistant?
Bone Marrow Involvement?
Slowly Rising PSA and Chromogranin-A
