Hello everyone. My wife and I made it to Windsor, England this morning. Tomorrow we head to Oxford for my first PSMA PET CT. I hope that thing lights up fiercely or this will be a very sad and disappointing trip indeed. The trip was rough but we are glad we paid those insane fees for first class. I would never had made it coach as I have to lie down flat to relieve my back pain. I can sit upright for about 1.5 hours maximum.
On a side note I had an MRI of my T and L spine the day before we left. This was recommended by Dr. Aggarwal from UCSF and not my own MO at Mayo Clinic. It showed the obvious metastatic disease but also extensive acute bone infarctions throughout my spine and pelvis. No stenosis or foramen encroachment. Now this makes sense to me why my pain has been so severe. Paired with fevers and sweats and a throbbing sensation in my back and pelvis that happens everyday since my wedding.
My wife and I are looking for medical oncology care outside the Mayo Clinic now. As I mentioned before I feel like my current MO has given up on me and palliative care is useless. They (palliative care) scolded me (a doctor) for prescribing myself gabapentin to help ease my pain (and it does help me) and refused any long acting opiates. So we are moving on from them and the Mayo Clinic in general. I mean I am just 47 years old. Fight the fight a bit better than that for your patient!
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Cleodman
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I share your feelings about Rahul Aggarwal at UCSF and the deficiency of the urologic oncology staff at Mayo. If you are in Minnesota, Charles Ryan at the U. of Minnesota might be a good choice.
Thank you so much for letting us know how you’re doing. I think of you often as I can see many others do as well. Praying that those damn scans light up!!!! So glad you made it to England
Hello, Always enjoy reading your posts. Good luck with the Lutetium treatment in Oxford. Do they offer Actinium as well? Please keep us posted on what happens to you over there. A lot of us see Lutetium as a very real option in the future.
Relentless, brother. I love your attitude - keep it up!
Just great ! Scolded by a doctor while fighting for your life . I know their job isn’t easy either . But what about Compassion first .. ? Keep fighting young man . I’m pulling for you .💪
Thank you for keeping us posted. I am so happy to hear that you are able to get the treatment! I read how difficult getting this treatment has been for you. Keep fighting!
Dr. C, Glad you made it to Windsor. Best wishes for success with the scan and RLT. Hope you're able to walk a little and check out town. I enjoyed the Windsor Grill, maybe get a good steak to go. Safe travels🙏
The nerve pain pills are essential. That plus high power Opioids are what keeps me upright at the moment.
To go without it like in your case is just cruel and senseless suffering.
I just landed hours ago after two flights, totalling 21 hours in the aircraft from South Africa to Toronto . I also splurged on Business class, and I totally agree, being able to lie flat was a lifesaver. Thanks KLM, staff.
All the best wishes with your treatments tomorrow, we pray for you.
Good luck. Hope you do light up like a Christmas tree. This group needs a winner. Take some time to get a fish and chips and a good English breakfast! Love the meat pies from the local butchery shop. Enjoy the trip and kill the beast!
I hope you get the result your looking for. It sounds like your in such a desperate state. I pray 🙏 for success with your endeavours and I can't belive you have to travel to the UK to seek this treatment. It beggars belief, 😎DD.
I hope Lu177 will work for all your mets. In our case, it decreased soft tissue mets for my husband (lymph, prostate, urinary bladder) but it didnt do anything for the bone mets. After 3 sessions, bone mets went on rogue. If actinium is available, pls discuss it with your MO if it can be added. Hoping the best for you since you’re abt same age with my husband (46).
So sorry you are having to deal with this nasty disease. Wishing you the best mate! I wonder if DES or E2 would help you? DES has helped many men after other therapies have failed. Perhaps Richard Wassersug can shed some light on this subject?
What a welcome posting to hear that you have made it somewhere that you can get treatment! All the best to you! Be sure to get a radiation certificate from your hospital and have it with you when you re-enter the US as they will detect your radiation. US Customs will scan you and go through some bureaucracy to determine that you are not a threat.
Good luck Cleodman. I too have given up on my local Oncologist and I am leaving for Bangkok in another week as I have faith in my Thai oncologist and nuclear specialist. Both are very supportive and very interested in my case since I have had virtually no previous hormone treatments only one shot in my belly fat in 2019 then 3 radioligand treatments in Bangko. That dropped my PSA from 989 down to 0.10 and no mets in sight. That was a year ago and now I'm doubling again. I'm up to 3.21 so I'm going back for another round. I know this is difficult for you but once you are back in motion- stay in motion. I'm a former marathon runner and I'm still running 6K 4x a week. I'm 73 and my Thai oncologist says that is why I respond so well to the treatments. I think you are taking the right treatment but unfortunately in the wrong place. Britain's response to Covid is less than admirable. Thailand has 775 cases in a country of 69 million and they have shut down all schools and locked down. It might be one of the safest countries to have Lute 177 treatments.
Wow. Good for you. Bangkok would not be an easy to shut down so effectively as memory serves me from years ago on my last visit there. What are the logistics for Americans coming in for medical treatment? Do you have contacts for arranging Lu 177 treatments there? Keep on running.
You really need your doctors on your side, always wanting to help you fight, even when you get to a point where you realize it time to quit fighting, so they steer you toward good palliative care. Quite a few doctors don't have very good manners when faced with a patient they did try to help, but failed. Being an oncologist is not much fun because they are the ones who take over the patients whose time with a urologist should come to an end because the urologist is basically a plumber, and no amount of plumbing can fix the Pca of many men, and they need the man who is good with chemicals. My onco has overseen my treatments since 2012. He's very down to earth, and I am to, and I don't harbour much faith in ever getting a remission, and my slow growing Pca is like a chronic disease that most probably will kill me sooner than I want it to. I think I have come to terms with having to die. Mortality terrifies so many ppl, but its going to happen to us all, sooner or later. So live a good life while you can.
Today I cleaned my filthy bicycle, and replaced a gear cable. I have other repairs needed, and all because I won't be dying tomorrow.
But I could not get Lu177 to give me remission, I don't know yet if I can have Ra223, I may have to have more chemo, something hardly nice to look forward to. Doctors are deciding......
Really glad you made it! I hope the scans are useful in preparing for your next leg of your journey. While I pass no judgement about your assessment on your MO, I have also found that we tend to fall into categories by most doctors. First is curable. Second is biochemically recurrent and the cancer is considered to need management with ADT and radiation to prevent further spread and ease pain (hormone sensitive). Third is castrate resistant with new meds and continued radiation for pain management, and PCa has spread further. Fourth is finding a clinical trial. Fifth is hospice care with heavy pain management.
You are very young to have this disease but I think it is hitting men at a younger age now, with more frequency. I was 57 when diagnosed and that was considered young f years ago. Unfortunately, youth seems to correlate with more aggressive disease. The link to studies that follow provide some information about that (maybe you have read them already). I include them because we should know the enemy.
PCa treatments change constantly and the stats get better over time, as the treatments improve. UCSF has a great rep and it might be worth checking out for the long haul, after you get back in the states. I really hope you can find the next miracle treatment that will give you time.
I will close by saying what I often say in these situations. Pay attention to your treatment options by not just thinking of living longer but of how brutal the treatment may be on your body and its likelihood for success. It is important to fight but it is also important to understand what your quality of life will be and for how long. Sometimes the life we are living now can be improved enough through pain management, that we can enjoy more time with our family and friends, and that is what is most important.
Not sure where you are located bit if Mayo was accessible you may want to consider talking with Dr Luke Nordquist. His clinic, the Urology Cancer Center, is located in Omaha NE.and he is a MO specializing in just urologic cancers. He is also one of the few sites in the US doing Lutetium clinical trials and will be opening up new radiopharm trials this year with Actinium and others. You can see what his patients have to say about him on Vitals.com. Good luck with your LU treatment....hope it works out for you.
hi Cleodman ... that's wonderful news that you are making it to Oxford ! ... hope that it all turns-out just as you want ... imo ... good idea to move-on from your Mayo MO
Excellent but somber news everyone . So the somber news is my metastatic disease is extremely extensive involving most of the lymph nodes of my lymphatic system and a lot of my pelvic and spinal skeletal system has been replaced by mets. It made my nuclear physician here sad after he looked at the results of the PSMA PET CT scan. I knew this. I think most of us “know” or “feel” when we are dying and I knew that I am dying since Jan 2, 2021. I am just too unwell to not be.
On the excellent side I have very high avidity of most of my metastatic lesions so let’s see what this Lu 177 can actually do for someone who is staring death in the eye. I have a feeling I will be in for some pain after treatment (more so than now ☹️) and that my lymphatic system will get clogged with dead cancer and immune cells which cause problems. Wish me luck...Jan 14th is Lu 177 day.
I see you are in a challenging time. But in 2016, I traveled to Melbourne from my small home city of Canberra to get salvation IMRT to my PG, because ADT was failing, and it was thought that local spread of PG was occurring. This was confirmed in Melbourne where I had my first PsMa scan with Psa about 6. 2 lymph nodes had Pca, so the docs did the 31Grey extra IMRT to PG and 45Grey to each
met, and they started me on Cosadex while I continued ADT. I doubt the IMRT worked at all, and the Cosadex kept Psa low for only 6 months. But you have to try things.
The lull in Psa level allowed me to have both knees replaced.
Its what you can do when Pca seems to be "under control".
But PsMa scans later showed more lymph nodes and then bones with Pca, and Zytiga made no difference although it kept Psa low for 8 months.
But while in Melbourne in July 2016, the new building costing aud$1 billion opened and I recall Joe Biden attended. He'd had a son who had died to cancer. But the new PeterMac Cancer Hospital began a phase 2 trial of Lu177 with about 31 men from Melbourne.
There were a few who were in your dire position and bed ridden. Some men managed to get out of bed and not be in pain and the scans showed remarkable reduction of soft tissue mets after 2 doses, with big reduction of bone mets after 4 doses, and some went on to have 6 doses. But some had hardly any response, and afaik, some would have died by now.
But it seemed to be apparent that lu177 was a better treatment than most chemo.
The records of that first Australian trial of Lu177 could probably be found at the website of PeterMac hospital, and look for research work by Dr Hoffman.
I had very small reduction of Psa after 1 dose LU177, and doc thought it was not going to do much. But it did do a lot after 4 doses. I had 2 more doses at 18 months after I began Lu77, and again I got lower Psa, but Psa has since risen again, but I did have 2 real good years.
I don't know yet what docs will decide now. But you are looking for more time,
Not what anyone of us wanted hear for the first part, you are a young intelligent man, don't let go of your future, many of your brothers here have thought that the end was just around the corner, but somehow sometimes there is the chance that we will all hold on.
My wife notes your age is 47, and that's her lucky number. She asked me to send you her best wishes and hopes you have a favourable response to your treatment. Oh, and I wish you luck and all the best from the Doe, cheers 😎 DD.
I have received PSMA Lu177 therapy nine times here in Europe over a period of five years, all of them with very good results - except for when I started having bone metastasis in the spine. It seems like Lu177 find it difficult to get to the cancer inside bones. For me, a combination of three treatments with Lu177 combined with external RapidArc radiation for the bone metastasis did the trick. Very low PSA (< 1.0) for a whole year after that.
Thinking of you this morning, hope you're getting some relief. Hang on!
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