I was diagnosed in April 2016 at age 49, with multiple bone mets and Gleason 10 disease. Initially I found it very hard to cope with this, but I managed to get over the initial shock and get on with my life.
I have been through, cryo-ablation to the prostate twice, Zolodex implants every 3 months, chemo (Docetaxel 3 weekly for 6 rounds). I have also tried various protocols of 'alternative therapies', I eat well (plant based), I try to look after myself with meditation, regular exercise etc. I also take about 20 supplements, which have evidence of killing cancer and/or strengthening bones.
I've had several CT/bone scans along the way, with virtually no change (which I can handle) but recently, things have progressed. Over the past 6 months (since chemo finished) my PSA has risen from 0.69 to 3.6 and my oncologist has confirmed castration resistance. I can handle this also. I have recently added Xtandi to the mix.
The scary development has been progression in bony mets. I met with my radiation oncologist yesterday and he said that although I don't have any new mets, he's concerned about two sites in my spine. I have mets at T6,T7 and L4. The met at L4 has grown larger and is now causing quite a lot of pain and has reduced my mobility. The RO has recommended 10 doses of radiation to this L4 vertebrae with the aim of slowing the progression and reducing pain. From what he was saying, he wants to radiate from the front and he said the radiation can also damage the tissue between my belly and the site of the cancer at L4.
The site he's most concerned about is T5, which doesn't show up on the bone scan, but on the CT scan there is evidence of Lysis (bone destruction) so he's recommended spot radiation there too, along with 4-weekly Xgeva shots (I had the first one yesterday).
He told me that if the treatments don't slow down the degradation, I'm at risk of a spinal event and given the location, that could be very serious, leading to paralysis and possible death.
I've started the ball rolling on the spot radiation, which should be starting on Feb 12th.
I guess I'm looking for anyone who can offer words of encouragement, or anyone who has faced what I'm facing. I will handle whatever this condition throws at me, but my hope has been severely dented.
Also, does anyone know of any alternatives I could consider. I know about Lu177 trials in Australia, that I can possible tap into, but that may not be quick enough as things seem to be progressing quite fast. Also Radium223 is not available in Australia to my knowledge.
Thanks for listening.
Paul.
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Paul, I hear you and can understand your concerns. Is there a possibilty that he could hit all the spots on the spine when he does the imrt? I had 20 cycles after a painful hip, and I feel absolutely no pain now. He was also able to hit many other spots in my pelvic area including debulk my prostate after 11 + years ,at the same time. The good news is your psa is not really high , and It is my feeling the xtandi will work well and knock both the psa and mets progression way back. I hope it works for a long time. I think you know my stats , also being a Gleason 10. I wish you the best! They have been worried about the progression in my bone mets for years, Myself I choose to be in denial of them, and call them arthritis, so I can continue to live my life.
Hey Dan, Thanks for your message, you always inspire me and boost my hope. I had spot radiation on my femur and that worked really well. It took 3 months for the pain to go away, but it's gone now. The RO did talk about radiation to the prostate but he wants to focus on the spinal mets first. He only suggested T5 and L4 at this stage as I guess they are the ones of most concern, I will ask the question though. I guess my fear is the radiation and Xgeva may not have the desired effect and the progression will continue. I also worry that the radiation will cause extra damage as it has to pass through a lot of organs and tissue to get from my belly to the front of L4. Thanks for your words of encouragement. I'm having a tough time, but I'll get through it.
It sounds like he has a plan for future radiation, I will keep the list posted on the results from my radiation when I get them, I may have been a bit late getting radiation however. I will keep you in my prayers for no colateral damage with your radiation.
You are in my thoughts and I just know you are going to beat this! Your initial posting had me convinced early on that you are a fighter with tons of energy!
My husband was diagnosed with PC Gleason 9. Had Rad Prostatectomy. All clear.. 6 months later, PSA started to increase. He did NOT have the radiation following the surgery and has since refused any kind of conventional treatment for this. His PSA is now at just 1.0 which sounds low but after a RP it is supposed to be zero. So this was all in 2015. Its 2018 now and a PET scan to check for metastasis showed that he had three bright spots show up in his HEAD and NECK! Completely unrelated to the PC. Biopsy results showed cancer to Base of Tongue with spread to one lymph node on the left. It is HPV positive so considered only stage One. THANK GOD! However, he has refused (thus far) any conventional treatment for this or for the PC saying Alternatives would not have side effects, etc. He is trying cannibus oil now for 60 days. No idea if its working yet but the idea is to get scans once the CO is finished to see if it has shrunk or removed the tumors. There have been so many claims that this works! I am wondering if you could try that before the radiation as it has NO side effects. I dont know how it works for bone spread but I do know that people have claimed to cure Stage 4 cancer using this method. I hope it works for my husband. He is only 57 and now has the two cancers. My best to you on your journey. Please send an update!
Thanks for your message Nina. I'm still fighting hard, NEVER GIVE UP is my motto, but it is hard at times. I'm sorry to hear about your husband's second cancer, that's a serious bummer. Good luck with the cannabis oil. It didn't help my PCa but hopefully it will help his tongue cancer.
Hi Nina, I tried high THC, Indica (1gram/day for 3 months), no improvement. I tried high CBD, no improvement. I tried alternating THC and CBD, no improvement. There are too many variables, but I can say that I have not read one credible story of someone with Metastatic PCa getting any sort of reversal of their condition. I'd love to be proven wrong. I still think it has hope, but someone needs to figure out the right combination and sort through all the variables.
Are you suffering from any side effects from any radiation treatment? Im sorry to ask and if you have previously blogged about this, I probably missed it. Husband is very (I mean SUPER SUPER) reluctant to get any form of conventional treatment because of the known side effects and what it does to the system. He spent 30 years in the military and 10 of them sitting on nuclear alert-thus his cancer (s).
So he doesn't want MORE radiation on top of already having so much. ITs a different type I know but its convincing him of this that is difficult or impossible I guess. I just dont want him to wait too long to get help. I understand his view point for sure, but he has a shot at being cured with treatment, according to the Proton Radiology guy, even with a Gleason 9 because his PSA is still so low... Any chance you could offer a message to him? He isn't on this site I dont think. Haven't asked him. But I think he would be very open to your advice. Thank you Paul!
Hi Nina, I had severe oesophagitis from radiation to the front and back of T5 vertebrae. This made it difficult to swallow and I could barely eat for about 5 days, but I soon got back to 'normal' after that unpleasantness. I also had spot radiation to my L4 (front and back) and my left femur. All of the radiation treatments reduced pain in a big way and according to the radiation oncologist, arrested the bone destruction (from the cancer) at those sites, so I think, at least for me, it was worth it. I understand your husband's reluctance, I was dead against chemo and radiation and I thought I would manage myself with CO and diet changes alone, but when the time came to make a tough decision I did chemo (docetaxel for 4 months) and the radiation I mentioned above. I feel the chemo did nothing for me, but I could be wrong, there's no way of knowing. Anyway, I'd be happy to send a private message to your husband, via you, if you think that would help, but I would never call it advice, just sharing my experiences.
Hi Paul, Happy Tuesday! I hope this finds you well and in great spirits, energy, etc.. YES i would love it if you would take the time to converse with him. He is a pragmatist (to the nth degree so likes to manage and research - maybe similar to you? And I asked him if he would be open to chatting with you and said yes of course. So, his email is 4peted@cox.net If you want to correspond that way. If not I can sign him up here but I think he is more likely to get to an email quicker. Thank you again and again and in advance for your help Paul! Take good care today and remember to do something really fun today to end the day feeling like you ROCKED it!
My husband said he saw your email and for some reason it disappeared! Can you possibly resend? He was very interested to meet you and read it. Thanks so much!
You have been very brave dealing with PCa. So sorry you are experiencing this progression. I’m sure you will get some great advice from others more knowledgeable than me.
I don’t see that you have been on Zytiga yet. It has had a great impact on me. Is this an option? It can quickly lower PSA - mine dropped from 1.8 to .8 in 7-days.
Also, are you under the care of a leading hospital that specializes in PCa and provides access to clinical trials that might benefit you? I felt much better about my treatment when I augmented my local care with MD Anderson in Houston, TX.
Hi James, thanks for your comment. The MO told me that I now qualify for Xtandi and Zytiga, but she favours Xtandi first (not sure why). I am being seen at a Hospital in Perth, by the best people in my state. There is no facility within 3,000km of me that specialises in PCa, so there are a myriad of different cancer patients in the waiting room. I believe the nearest specialist centre is in Melbourne, Victoria, which is a 3.5 hour flight away, so not exactly practical. Thanks for your prayers.
Do not have any medical suggestions for you, but please know you are not alone! You have more people than you will ever know praying for you.
Please know that you are still here, fighting this monster called cancer. Keep on fighting! There is very good news about radium 223 use in Australia that just came out last month. I hope that it helps. Perhaps show it to your cancer team to see if they can fight you you to get it.
Keep up hope! They are making advances! They are coming on line!
You do have a heavy load to carry but you are not alone. Your brothers and sisters here all want to help you. Hopefully someone here can offer you suggestions on care. Please know, people like us we have to stick together! We are all family!
Dr_Who , I really liked the lady dr on the video. What an easily understandable explanation of APC. If any newbies have not seen the video I suggest that you do so. Thanks again !!!!
Paul
Don't struggle, fight back, take charge and turn the situation in your favor. Having a little tissue damage is better than serve spinal damage. Do what needs to be done in order to keep your spine from breaking down and knocking you off your feet.
Your hope hasn't been severely dented, it's been dinged, minor setback.
Xtandi has been known to work wonders. Give it a little time and let it work.
Above all, remember who's in charge of all this and it isn't cancer. No matter what happens, you win. Now get busy and beat this BS back!
Cheers, I will get back on track, just venting. I'm still working full-time. I considered stopping work, but I consider that giving in to it. I think I am getting busy, just frustrates me, when others seem to be holding things at bay and everything I try seems to lead to nought. I know we're all different. Anyway, I intend to keeping kicking it - hard!
Thanks for that Nal. I did read somewhere that BAT is not used where guys have pain (I certainly do have pain). Anyway, it's something I will look into. I appreciate your comments.
My doc also said Xtandi first. 2 weeks dropped PSA 25%. continuing Chemo (#8) and Lupron (#3). this week. Hope blood results keep showing improvement. Keep your spirits up. I'm still working full time too. Railroad Engineer. We Gleason 9/10 guys have to support each other.
Very sorry to hear about your progression. We are all pulling for you here, hoping you are able to turn things around.
I'm really hoping Xtandi works for you and there's every reason to believe it will. It has for so many others. It's great that you have that option now.
Hoping you see good results quickly and in the meantime, the radiation should help with the pain fairly quickly.
Wishing you the best for your treatments. Know that you are in our thoughts and prayers.
I hope the Xtandi and the Xgeva may start to provide some relief and results soon. ( I had lots of bone mets held stable for a couple of years after initial diagnosis on Lupron and the bone agent Zometa. After my cancer went "resistant", Xtandi brought my PSA down from around 95 to only 1.2. Everybody's body and cancer response can be different.)
If you may be contemplating getting your spot radiation done at the Radiation Oncology department of the Cancer Centre, Sir Charles Gairdner Hospital on Gairdner Drive, Nedlands, Western Australia, you might ask them to go over each of the 4 or 5 options they offer for
External Beam Radiotherapy (EBRT): namely,
* 3D Conformal Radiotherapy (3DCRT),
* Intensity Modulated Radiotherapy (IMRT),
* Image Guided Radiotherapy (IGRT) and Stereotactic Ablative Body Radiotherapy (SABR) on the linear accelerator (LINAC) machine,
* and
their CyberKnife machine.
Ask them how they will do the radiation Treatment Planning to go after that L4 or T5 site, and what are the Pros and Cons/Risks of using each of the options listed above, particularly in terms of the amount of radiation that will be done to tissues in or near or in the way of the target area. They should be able to calculate in advance exactly how much radiation will go where, and to discuss this with you in enough detail to help you make an informed decision as to which option may be best, overall, and what kind of adverse side effects you may or may not experience.
Thanks Charles, yes that is the hospital I('m going to. The head of Radiation Oncology, is a very well respected expert, who has been published in the Lancet and I feel I am in good hand, but I really appreciate the suggestion.
Hi Paul, sorry to hear about your situation. Have you got any results since you started Xtandi? Is it doing anything? I have done 2 rounds of chemo so far and I guess that I am likely to see progression afterwards just like you. I askes my MO about xtandi and zytiga and he said don't bother 'you have no androgen axis'. Thats because I started casodex after zolodex failed and if Casodex did anything, it made PSA grow even faster.
Luckily I am at Peter Mac and MO has already told me that he will put me onto Lu1777 trial if docetaxal doesnt do anything. I know Melb is a long way from you, but it is possible to get treatment in Perth theough Theranostics. Only problem is that it will cost about $9,000 per treatment.
I need to discuss BAT with my MO as suggested by Nalakrats but I know what he will say 'There is no evidence to support this...'. Peter Mac is a good hospital but they don't seem to step outside the current certified practices.
But hang in there mate. There is still plenty left to live for so dont give up just yet.
Hi Hazard, thanks for that. I have heard good things about the Peter Mac centre. I actually thought I read they were doing a BAT trial there, maybe I'm mistaken. The Lutetiumm 177 trial is also available through Fiona Stanley Hospital in Perth, so that's an option. I looked into it a little while ago and there were two streams, one for Lu177 and one for Cabazitaxel and you do find out which stream you are in, but you have no control over it. I didn't enjoy the Docetaxel, so I'm not real keen to go through another chemo so soon, but thanks for your comments, I appreciate it.
Also, sorry I didn't answer your question. I've only been on Xtandi for 5 days, so too early to say if it's doing anything. I imagine it is, but I'm more concerned about the risk of spinal events at the moment.
As a fellow g10 you I have the deepest regret that you need to deal with this cancer at such a young age..
I also had good luck with Xtandi (it was one of the few treatments that actually worked in slowing my progression so hopefully it works for you also.)
The radiation treatment is also something that worked in my pain management although the time they went through my abdomen I did throw-up once. No big deal just some more info for you.
If you do get a chance to use Radium 223 I had that also and it did work for pain (no side affects) just in my case it didn’t last too long (I believe it was only 4 treatments for me).
Overall it seems to me that you plan is sound.
Keep you eyes on the important stuff like your family and you’re going to do fine.
Hi Paul thinking of you, I’m always here to talk if you need to. If anyone can do this it’s you and looking at some of the above posts the men have had similar news but are still going strong many years later. Your still in shock with the news but your going to come out fighting. 👍
Thanks Ant. Yes, the conversation with the RO did leave me in shock, but it's worn off and I intend to get busy with life again. Thanks for your comments and offer to chat, I may take that up. Cheers Paul.
There is a study out there on how to lengthen the time to Zytiga resistance. The odds are Xtandi will only work for 6 months or less. The patients were on Lupron and developed castrate resistance. Here is what they did...they added Zytiga and when the PSA dropped by 50% they got off Zytiga and when the PSA rose by 50% they got back on Zytiga...this on/off regimen more than doubled the time to Zytiga resistance. Run this by your Docs. BAT is not for cancer that has reached the bone..will increase pain and cause the cancer to explode.
The only time you would want to consider BAT is when there is resistance to Xtandi/Zytiga to try and reset the clock, after the bone disease has been treated by radiation.
Thanks Gus, that's very helpful. I will certainly discuss these ideas with my medical team. By the way, I love your sense of humor, always brightens up my day, keep it up.
Paul, you are human and you can vent as much as you want. If you could take a leave of absence from work and just do what you want to do, maybe that can have a positive affect on you and your fight. Stress is dangerous for you, and you deserve to have less stress in your life, even for a relatively short period of time. You could always return to work later. Be good to yourself!
Cheers Don, very sage advice. I'm about to go to Hamilton Island in Queensland with my wife for 5 days. It will be a good chance to decompress and have some down-time.
Always my good wishes Paul. Hoping, wishing and praying for all of the treatments to work work wonders for you. The Xgeva and radiation did wonders for lg. You're amazing, strong and always helping others here. Lean on us for a while 🤗
You're too kind Jackie. I thought I was pretty smart, but I feel like a mental minnow compared to many of the folks on this site, you included . Most of my comments are just my personal experience and I hope they can help others in some way. The support from everyone is terrific, it has renewed my hope.
Cheers Gary, The Lu177 trial is starting in Perth in March/April so I'm looking into that. See you soon. Cheers Paul.
Paul, I'm one of the guys on this site battling PC too. Just wanted to wish you success in your treatments and let you know that we are all pulling for you. You seem to be doing all the right medical and personal life style things to deal with PC and have competent Oncologists and doctors working with you. People on this site are very knowledgeable, helpful and care about you and everyone. Hang in there and keep going.
Thanks for your comments and thoughts Jorge. I like your attitude. Cheers Paul.
Heavy duty treatments you’ve recieved. No easy answers . I understand your felling of dented hope. But dented hope is better than NO hope. You are young. These are unbelievable circumstances we get into. At last check I had lost 15% bone density in 2yrs of adt. At this rate I’ll be a sea slug in five years if I’m lucky enough to even be around. Others that have been exactly in your spot will reply with the correct moves . You will beat this down . Not without a fight. We’re all fighting for our existence. Do,anything that takes your mind off APC.Hopefully we can do that for a few minutes a day even when severely ill . Other fellows here have overcome worse. Not comparing diseases, I’m really kind of tired of that, just know that it IS possible for you to do better . We all know the psychology Of APC can be brutal at times like these . I also just found after a crazy painful bursitis attack on both hips , one that I couldn’t stand or walk without brutal pain.I was in Malibu with family and I could not walk to,the beach. Didn’t want to spoil the families fun so I waited 3 hrs at the car. Not being able to walk . Instant depression. Went to ortho thought I needed a new hip . Now I have some dgeneration mild in hip but don’t need a new one. ,. That was my fear after walking my mom thru. 2 hip transplants. Instead the x-ray shows the bottom 5 disc practically non existing disc bone on bone. So our futures so bright we gotta wear shades. I think that you’ll do whatever you’re called on to do to live many more years. I think you’ll beat it down .
Hey Lulu700. I appreciate your comments and thoughts. I have picked myself up a lot since I first posted and I am still fighting the good fight. If it takes me down, I will have no regrets as I've done everything in my power. Keep on kicking it.
Hi, I had a genetic test, the only one available to me which looked for 20 or so genetic mutations including brca1 and 2. The test found nothing. I have asked about testing for more precision treatment but I was told by my oncologist it's not available.
Paul, has your doctor checked you testosterone levels and your DHT levels? Maybe DHT is feeding the cancer and you just need an additional med like adovart or proscar to knock it out?
Hi Dale, my bloods were tested recently and my Testosterone is 0.6 nmol/L (castration level) and my DHT was < 0.08 nmol/L (Dr said that is considered undetectable).
Hey Paul,
Sorry to hear about the progression of you cancer.
If the cancer is PSMA positive it can be treated with Lu 177 PSMA which is a nuclear medicine therapy developed in Europe mainly in Germany and very effective in some patients with metastatic disease. There is a pretty good experience in Australia with this treatment. Many people from abroad go to Australia for this treatment.
There are at least 3 clinical trials going on for castration resistant metastatic prostate cancer in the USA.
Please search for Prostate cancer and Lutetium 177 at clinicaltrials.gov
The first things is to determine if the metastasis are PSMA positive.
A Gallium 68 PSMA PET/CT will identify metastasis is they are PSMA positive with a PSA of 0.2 or more. There is an ongoing study a UCLA got Ga 68 PSMA PET/CT:
Please do a search for prostate cancer and Gallium 68 PSMA at clinicaltrials.gov
My treatment was in 2016. I had a multitude of metastasis in the lymph nodes in the pelvis and abdomen . After 1 treatment the metastasis were gone.
The treatment can kills cancer cells castration resistant and hormone sensitive in the bones or in soft tissues. Very well scientifically documented treatment.
Anything please let me know and I can provide more information.
G'day Raul, Thanks for your message. Yes, I have looked into Lu177. It is offered in my home city of Perth through a clinic called Theranostics at about $7,000(USD)/shot. There is also a clinical trial here in Australia at my treating hospital (among others). I'm pretty sure it's part of a worldwide study group and it is a Phase 2 trial. I hope to discuss it with my Oncologist in a couple of weeks and it will be taking place in March/April. It is not blinded, so participants will know whether they are on Lu177 or Cabazitaxel. Thanks again.
Hi Paul, I had a Ga68 PSMA PET scan at the University of San Francisco as part of an imaging clinical trial 16 months ago. ( I had started with an original PSA of 5,006 with 20+ bone mets and also lymph node involvements in Nov 2013. Lupron took me to a nadir of 1.0.) When I had the PSMA PET, my PSA was in the 60-80 range and climbing. I had about 10 areas that showed up "hot", including broad areas in both hips, the sacrum, several vertebrae top to bottom, a couple of ribs, etc. Fortunately, I was pain free. I started Xtandi 14 months ago at PSA 95. Here's the PSA response rate that I got.
Your mileage may vary, of course.
We all hope the Xtandi works quickly and well for you, particularly with the symptoms.
Hi Andrew, My condition is relatively stable with Xtandi at the moment. I'm hopefully getting a PSMA/PET scan next week and Lu177 soon after. Cheers Paul.
Wow Charles, that's awesome, I hope you continue to have such good results. I've been on Xtandi 3 weeks now and although I haven't had a PSA test (I'll have one next week) I'm feeling way better and most of my pain is gone. I was seriously starting to feel like s 100 year old and my mobility was getting very bad, but it's pretty much back to normal now, I just hope I get a good run out of it as I've found the side effects to be no big deal. Cheers Paul.
Hi Paulofas yes lu 177 is available in aus and in Perth, through Theranostics Australia with Dr Nat Lenzo. My Psa at diagnosis two years ago was 5000 with extensive mets. Adt took it back to 4 then failed. I have used LU177 twice and its been very successful- knocked out a large amount of the primary tumor and the mets in my hips , stopped the cancer dead in its tracks. Im on xtandi now which is working well. Nat does the Radium injections by the way. I had a very aggressive doubling rate. The LU 177 did give me some bone pain and lowered my hemoglobin, but overall its been great. Lots of work has been done on it. It can extend quality life for years. Check it out call them good luck and pm for any info jonny
Great to hear - about to have it, if i qualify PSMA scan. Don't suppose you went to Arcadia clinic in Germany by any chance?
Hey Paul! First I saw your picture with two little girls and then I red your story. My husband had been diagnosed two days before Christmas last year while he was in ICU due to the complications after the biopsy. We have to young boys (5,9). It was painful to read what you are going through. Because I simply sympathize with you and your family. I am sure you know that your young family is the reason you must fight. I will keep you in my prayers. As I Pray for finding a cure that saves lives of millions of people and having my husband next to me for many more years. But for now, lets live in the present do the best, think positive and make the best memories! You are a fighter and fighters never give up.
Hi, I was advised to push that back. I'll be seeing the specialist in Dec/Jan, but as my cancer has morphed into the small-cell variety, it may no longer be appropriate. I will also be asking about Lu-177-DOTATATE (known as Lutathera) as this is shown to work with small-cell cancer, but I'm not sure if I'm suitable yet.
Hi Paul. We talked many years ago and I did the APAC dendritic cell treatment 7 years ago. I am not cured and came to India to visit after being here so many times. It was great to to see it, even if I am a little slow. I am now 64, and was dx'd at 54 with a PSA of 212. I may come over to do the Lu177 that's available here. I have done a lot of vaccines over here, and have done pretty well with them. Cancer is still with me but at .08 I hope to make it another couple of years. 7 years is way more than I thought I'd get, and only 2 years with ADT. It certainly about killed me.
Always followed Paul. I remember when he passed on. It was pretty emotional to me. We talked a lot back then, and he was interested in the dendritic cell therapy I had back then. It only had a 30% chance of helping someone, but it's been out of my bones for 7 years now.
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Bone Scan question
Spam me with any stories of hope or guidance for my Dad - Gleason 10, bone mets in spine 
Arthritis or bone mets on scans?
Off clinical trial, on to radiation and chemo
