My disease has been progressing extremely quickly since November 2020. I am now for the most part bed bound due to lower back pain and bilateral leg pain. My lymphatic system is blocked on the left leg due to severe lymphadenopathy in my left groin. My worst nightmares are now coming true. I have to take 4 different pain medications every 6 hours or the pain gets away from me. Thank God my wife is a nurse.
We are trying to get to England or Israel this weekend for possible Lu 177 treatment with the hope of getting this pain under control. I am dreading the long flights and managing my pain during travel as I am only comfortable on my back now. If Lu 177 is not effective or I don’t express enough PSMA then I will enter hospice. ☹️
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Cleodman
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All my prayers... Your case sounds like mine.. however, I am just 13 months into this since diagnosis.... Remember, you can get Lu177 other places is Europe too.. Finland, Germany, Austria.... wishing you can get things under control again !!!
Words completely fail, C-man. I can only say that I'm thinking of and pulling for you, your wife, and everyone that cares about you. No doubt many others here feel the same - I hope that you know you have supporters. Keep fighting for that Lu-177 opportunity, brother. - Joe M.
I just dropped to my knees and put in a word.
Prayers for you and your wife - so sorry to hear of your pain..
Your suggestions are always welcomed TA but getting into clinical trials is difficult. I have contacted every single one that involves Lu 177. Most have not written me back or the waiting list is super long. No I don’t think clinical trials is the answer for me. I can’t walk more than 30 feet anymore.
An old kind of chemo called Mitoxantrone can sometimes relieve pain even when the taxanes don't. One guy I spoke to improved a lot with it for a while.
I wish I could take some of this burden you are carrying from you. If you haven't already, demand a covid-19 vaccination from your doctor and get to Israel asap.
England is closed again and who knows when that situation will be resolved.
Good Luck and God Bless.
Congrats on your marriage. At least you have that going for you in 2021
Thinking of you... try anything you can to move around during the day, even if it's just standing up for a few minutes. As you know the lymph system is passive and depends partly on muscle contraction and movement to drain. God bless.
Doctor, I hope you can get over to Windsor asap for the scan and RLT. Sorry to hear you're suffering from pain. You might try adding CBD and/or THC to your protocol to help with pain and sleep. Praying it all comes together you you🙏
Sorry to hear about your clinical condition. I wish you the best of luck with Lu 177 PSMA treatment. It was beneficial to me when I had it in 2016 at The Technical University of Munich. It is a treatment which could have benefits with minimal side effects unless there is diffuse infiltration of the bone marrow in the PSMA PET/CT. Ac 225 PSMA will be a better choice in that situation.
I am very sorry for the pain you and wife are going through, your physical pain and her emotional pain. I am not sure what will ease your pain but I pray that you find what you need quickly.
The plane ride sounds like it would be too much. Maybe a charter plane would allow you to be able to lie down during the flight, if you can afford it. If not, maybe you can raise the funds....or maybe some family and friends would go with you and help pay for it that way. Sorry, it's a crazy idea.
So sorry to hear, if you are thinking to come to Israel you should know that we are going to minimum 14 days of tight lock down from 7/1/21 due to covid19 spread .Another thing that you should check is the mandatory 14 days of quarantine for visitors arriving from red countries, I don't know what's USA status now.
Which hospital or medical center is the one that your interested to be treated ?
Sheba. Yes I know about the quarantine. We have trying to get permission to go there of over 1 month. Reminds me of the USA. A lot of bureaucratic red tape. But I understand. You need to protect your population.
Good luck man, sheba is excellent medical center with great doctors, I did my radiation there ,if you'll need something during your stay, or just want to talk you can send me private message, and I will contact you. I will be 54 next week diagnosed 3 years ago so we are both quite Young people.
I live less than a hour drive from sheba so anything that you'll need can be arranged easily.
Given your young age, I strongly recommend getting a genetic testing if you haven’t already. Based on that you can see that a PARP inhibitor could be the next step.
Same for me... I have a mutation in BRCA-2 which probably caused this disease at such a young age and also very aggressive... Haven't gotten to PARP treatment yet since I am still castration sensitive (and it is still not approved in Europe even for castration resistant PCa as it is in the US since July 2020)....
The same day I got diagnosed with Oligometastatic MSPCa I got on ADT (Eligard) + 30 days of Bicalutamide and then added 1000mg Zytiga (Abiraterone) and then radiation during month 3 to 10: 1) Prostate 2) three bone mets 3) a rib 4) boost on bone mets 5) lymph nodes 6) entire pelvis.... PSA was 88 now <0.10.. Gleason score was 7 (4+3 ) in all 12 biopsies.. Have PSMA PET/CT scan in March to see current status... Still no chemo, PARP, Lu177, Xtandi, Xofigo etc.. So still some possibilities along the road. Still have hope since I have responded well so far.. my strategy is to have pro-active and aggressive monitoring and hit early and hard when new lights start to show or current start to increase.... My dream is to go on ADT vacation, but time will show how things go... I fit well into this study I think/hope:
I did a vacation from ADT last year for a quarter, not much different with flashes staying there until the last couple weeks. It took my testosterone awhile to come back, but in the last month it came back which was nice. PSA went from .1 to .3 to 2.1 in those three months. I kept thinking that there has got to be a better way than ADT. The search goes on.
If you are trying to get Israel this weekend then you are still fighting! Visualize yourself getting on the plane and getting off in Israel. Hold onto that vision. My prayers are with you.
Since it sounds like you have nothing to lose, google "mycancerstory.rocks" and read Joe Tippens' blog. Taking Fenbendazole (and curcumin) cured Joe (and now many others). Cost is low, taking it is simple, side effects are very rare. Cancer docs don't like to hear about it, so you will have to consider not telling them. Joe had a different type of cancer, but was about where you are when he started taking it as a last resort. Pulling for you.
Funny you should mentioned that as I have a bunch of fenbenazole that I will start this weekend. Not doing the curcumin as it interferes with the PSMA uptake.
Yeah my concern is the his cancer was NSCC of the lung with is well know to use glucose as a primary energy source and prostate cancer usually like AA and fats until very last in the disease. But when you feel you at at the end who cares right.
C-Man, Is the lymphedema due to obstruction from tumor (metastasis) or is it due to radiation damage and/or lymph node dissection? If the latter, there are specialized lymphedema nurses/therapists to help deal with it. Most often working with upper limb breast cancer patients the use specially fitted compression, massage and drainage exercises.Delayed onset Radiation Induced Lumbosacral Plexopathy (nerve damage) can start years after pelvic radiation and causes debilitating leg and back pain. It gets much worse when you try to walk hence is called pseudo-claudication. It is very difficult to treat. But the combination of pentoxifylline (Trental) 400 mg delayed-release, three times/day combined with Vitamin E 1000 IU per day has been shown to help. It can take some weeks to achieve maximum benefit and must be continued long-term.
I am dealing with this too, though mine is not as severe as yours now. Here are some articles for discussion with your MO. Every cancer center should have a lymphadenopathy nurse-therapist. Best of luck. Here for you.
I have neuropathy in my feet. I took MOTHERWORT. And the pain subsided. This was serendipity because I was taking MOTHERWORT for prostate cancer in general. I found it was a vasodilator. Xtandi causes this type of pain so I was relieved to find it relieved the pain in my feet.
Probably a bit of both. The urologist removed a lot of lymph node when I had my prostate removed so I am sure that does not help. I never had radiation to my pelvis. My L groin is really puffed out so I am assuming that the lymphatic system is getting hung up here.
As a RN and wife of a man with neuroendocrine prostate cancer, your message hits me hard. My life is my husband's life as I am sure is your wife's. It is a full-time,plus,job advocating,calling,caring..doing everything I can to get him care. He has little pain,thank God. You probably see palliative are. It is not hospice. I worked oncology and worked with palliative care doctors. They excel in pain management. No one should have to endure pain. As I believe in unexpected outcomes,I hold out for the best for you and yours.
What is your PSA now ?? Before you spend the money on LU-177 treatments, have your PSMA tested here first. Without a good strong PSMA response, LU-177 will not work.. Look into Xofigo, (Ra-223) It might work for you and your insurance will cover most of it.. Talk to a RO about it..
I tried to get the scan. We are definitely going on a leap of faith for PSMA avidity. Every day is worse. I can only walk to the bathroom now. Yes Xofigo is on my radar but it excludes you from several clinical trial looking at radionuclide therapy here in the US. I will look into it if my leap of faith was incorrect.
I hope something breaks for you, that you get that trip to England or Israel and the LU 177 works.
What might help a little with pain--when I had sciatica my Doc told that there was once a pain med, APC. The acronym stands for aspirin, Percocet and caffeine. The caffeine was in it because it "drove" the pain meds, intensified their effect. He had me on 1,000 mg Ibuprofen 3X a day. I found that in the AM after taking the first 1,000 mg while sipping my first cup of strong, black coffee that the pain was decreasing as the cup emptied.
Just a thought--and my thoughts and prayers will be with you.
I am not a pain management person. I think of CBD, morphine and what used to be called a century ago sounds like laudanum which I think is opium. And prednisone and the hated opioids. I think an invocation from a religious to you to be healed via our God and Saviour. Dont discount the faith and Gods presence. He has helped me in the worst of times. I will ask Him to save you.
My heart goes out to you and your family. Life can be so cruel, you don't deserve this. Everyone should hug their loved ones extra tight tonight and say a prayer 🤗 ❤️ 🙏, DD
In Nov 2018, my Psa was 25 and chemo had not done much good earlier that year.
I had 4 doses Lu177 at 8 weeks apart from Nov 2018 May 2019 and by Nov 2019 Psa went to 0.32. But by July 2020, Psa was back to 30 so I had 2 more doses Lu177 in July then October, and Psa fell to 7, but now its 28, and the suppliers of Lu177 here in Australia say more Lu177 will not give any large benefit.
Your problem now could be trying to travel to where you can get Lu177.
And I only had to travel 300km by train here in Australia to Sydney, but due to C19 the air travel could be unavailable.
Yesterday I just had my 10th PsMa Ga68 PET+CT scan and I have no idea what was found, but I fear the worst from mets that have low PsMa expression. But Lu177 was good for all soft tissue mets, ie, where mets were in lymph nodes. But I don't know if that is still true.
My Pca is mainly in bones with mixture of high and low PsMa expression and Ra223 is now being considered if I don't have a high number of new mets in soft tissues or organs.
The Ra223 is likely to work OK on bone mets because it does not rely on PsMa expression. But if I have a lot of new mets not in bones, I will probably have to get Cabazitaxel which probably won't work just like Docetaxel.
So my cancer spread now could be anywhere, all totally unpredictable and unexpected, and unwanted, and perhaps untreatable. I may need pain relief and here they can do it with slow release Fentannyl inserts under skin, but last time I tried Fentanyl from a bedside machine in hospital for another medical condition, it worked but I felt groggy and dopey, getting dose just right was critical, but I had no addiction problem. Morphine was better, but the hospitals don't like giving a lot of that.
I have been a keen cyclist since 2006, and have been cycling 220km+ a week average for right up to now, so this minimized side effects of many treatments since diagnosis in 2009 with in-operable Gleason 9.
I'll know soon if there's hope to extend my lifetime a bit more with Ra223.
There is also Ac 225 that does not need PSMA expression. I am sure it is available in Australia. Well I don’t expect a cure for sure. Just would like to kick the can down the road. My fear of entering hospice is that my 47 year old body will not give out and I will just be battling pain for a long time. Keep up the biking. The greatest negative affect c19 had on me was prevent me from going to the gym and hiking since they closed all the trails. You have to stay conditioned to whether the cancer exacerbations. I would never do chemo again. It is a band aid and when I did it in the beginning I was well and still it rocked me. My current state would be a disaster. It’s radionuclide therapy or nothing. I have no abnormal genes that you need for PARB’s or other available drugs out there. I don’t even see my oncologist anymore. He just referred me to palliative care and moved on without even telling me.
I am not aware that there is Ac225 which does not rely on PsMa ligand chemical to make the Ac225 or Lu177 bind to Pca mets. The doc at Theranostics Australia did mention adding Ac225 to Lu177 but seemed reluctant 225 has much more severe side effects. The Germans who invented Lu177 treatment based on PsMa may have done additional research I am not up to date with. Nuclides are OK, but like all things they are not perfect and I got a good response with Lu177 with 2 years between the time Psa was at start and now, with elimination of soft mets and reduction of bone mets. Mean time for this "benefit" is 14mths
I also hated chemo in mid 2018, but I cycled to the hospital to get chemo, and cycled every day. Fortunately, C19 here has been negligible. Just in case, I had a C19 test last Friday and was negative; I new I'd be seeing docs this week so I prepared.
The Docetaxel left me with "Lazy feet" and I tripped over them a couple of times, but my cycling speed is not affected, and at 73yo, I flew across to see the onco last Monday at average speed 27.4kph, or 37 minutes for 17km, and previous good time was 43 mins.
So a man can be quite sick with cancer and be real well at same time, but you have terrible pains and I don't, and I am not a doctor and can't offer a solution, but maybe you need to have an ask around for "better doctoring".
Here they allow ppl to stay at home for palliative care and die at home, and that's what happened to the man next door who had lung cancer. He could never stop smoking. He had the most horrid time in second of 2 years that he lasted after diagnosis.
There are 4 levels of chemo here, Docetaxel, Cabazitaxel, Carboplatin, and I don't know No 4. All make ppl hate chemo, and some ppl get remission, depending on what type of cancer they have and where it is and how much they have. Chemo success for Pca is not always a happy ending, but if that's all there was for me and I could not get nuclides, then I'd probably do chemo until I could not, or if the Pca still spread like wildfire and there was nothing else. Then I'd embrace the palliative care, and wave goodbye to all the friends. But I can still cycle 80km in a single ride and feel extremely well.
hi Cleodman ... i'm so sorry to hear about your suffering ... i encourage you to take-a-look-at envita.com ... praying for you ... best wishes ... Nous
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Why is Jevtana used as one of the last options for the cancer?
Archive tumour genomic sequencing test advice needed.
Good luck and prayers but I'm done
In need of advise for my father
Lu 177 vs chemo/docetaxel
