It pains me to write this as I'm probably scared to hear the truth. I've posted a few times, but this time, it's different.
Dad was in hospital for a spinal cord compression - new activity on c3, new mets to spine and PSA soaring to 1800. Those dreaded words, "all options have been exhausted". I pleaded with the Onc if we could 'think outside the box' , can we try something, anything.
2 cycles of Carboplatin brought his PSA down from 1500 to 1300; we were hopeful; yet after the 3rd cycle, PSA shot up. It should be noted that Carboplatin was given at 75% strength due to Dad's previous history of chemo toxicity,
Lutetium has been mentioned which is no longer available on NHS, so am making plans to fly him to Turkey, in particular Dr. Kezban Berberoglu (thanks to the original poster who suggested her)
Apart from this, is there ANY treatment (apart from Lu 177) you know of that's available in Europe thats not available in the UK? Any centers/specialists that I should be contacting?? Tall Allen and everyone else...your suggestions are much needed. Dad has had a liquid biopsy, but never genome testing with the cancer tissue sample. Should I be pushing for this or is it too late?
Overwhelmed and desperate
Omer
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kikinini
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You mentioned previous history. Can you fill out the bio? Your dad has a whole history of treatment including chemo etc? The spinal cord compression is due to metastasis to the vertebrae etc.?
Many thanks for your reply. Yes the spinal cord compression is due to metastasis to the vertebrae.
I will fill out his bio - he has had so many treatments in the quest to find one which works. Give me a few days, Im getting his synopsis of treatments that I can then fill out accurately.
You should consider contacting centers offering alpha emitters linked to PSMA antibodies. Here is the article link with names. joint-research-centre.ec.eu.... Obviously docs need to review the treatment history for your father.
You are amazing! Thank you for pointing me in the right direction...so many options which I will now look into, thanks to you and so many others on here. 🙏🙏🙏
He could get into this trial. There are several sites in the UK where he can join. The new drug is Cypides which is designed to be used when nothing works anymore.
Thanks to you, I would not have known about this trial. Seeing his Onco next week, and this is something I will definitely bring up. Had a look at the trial suitability and looks like Dad would meet the criteria; baffles me why it was never suggested. Guess thats what everyone means by 'advocating for yourself'!
The oncologist has to treat different cancer types too so he cannot know about all available trials. He may know the drug under the older name ODM-208.
Thank you Tall_Allen. Yes, have requested it. His Onc thought he had already had one done, but no...only a liquid biopsy was carried out. Hopefully, next week this should be done.
I have emailed him to see who you should contact, it's a new trial that coming out which I did some zoom meeting on for feedback on the consent form. Look like a game changer if it works.
He said look on this web link and check out what trails are available the AB001 has not been licensed yet plus get your oncologist reach out the Dr Brono at the Royal Marsden and see if they have any trials which might help. Look at the prostate cancer team at the Royal Marsden yourself it has his email address drop home a line, don't believe what your doc has said get second opinion
Thanks so much. That's a great help. Did you mean Dr Johann Bono? I remember reading about him, if thats who you mean. Surprising that Dad's hospital works in partnership with the Marsden.....I will definitely email him and will not give up. This is all so helpful.
Hi, Kikini,Wishing you and your father well. My PSA started at over 3000 when diagnosed 3 years ago. Now increasing with chemo after Xtandi. Only up to 138 so well below your father's. I concentrate on trying to enjoy every day and let my Onc and MDT worry about treatment options. Life is too short to get worked up. Is your father unable to get out of bed/chair for half a day? If so although we will all die it is very unlikely he will die within next 2 months and could still live for years. If totally bedridden then probably less than 2 months. This is my understanding. So either way help him and you enjoy time left. Today, where we are in UK, the sun is trying to shine. I will go out for short stroll and appreciate whatever/whoever I see. I am similarly in my 70's. With extensive metastes in all my bones since diagnosis and subsequent Metastatic Spinal Cord Compression. I have just tried to be careful not to break anything and tried to make a success of medication offered. I have researched and tried to understand treatment but not direct it. After enjoying 3 years holding progression at bay I feel I have been very fortunate and don't mind if I have only a few weeks left or many months. I will still try to enjoy and make the most of every day. Best wishes to you, your father and anyone who reads this post.
Multiple people have mentioned metastatic spinal cord compression. And my diagnosis I had the beginnings of this and minor but noticeable gait problems. The image interpretation mentioned to severe narrowing of the spinal canal. Fortunately the GnRH antagonist which I was prescribed (Firmagon/Degarelix) worked very quickly, and then with the added Zytiga/Abiraterone and chemo I have done very well. But I still have compromised vertebrae. This is a big unknown. One needs to exercise but at the same time avoid spinal fracture.
How do you know you have compromised vertebrae? Does it physically constrain you? I ask because I have difficulty bending down getting dressed. I suspect something like what you say.
Hi Ian. I was originally diagnosed over 6 months because of a growing backache. My doctor did yearly and was prejudiced against PSA testing. My backache became so distracting I was losing my ability to focus at work. My doctor's first solution was to suggest I had strained my back or something. He gave me pain pills.
Then he finally gave me an x-ray. But x-rays aren't so good at seeing certain kinds of things like tissue gross. So then a month later we had a more detailed x-ray. And he said this is emergency and ask for an MRI. With our wonderful Healthcare system in Canada I was scheduled for an MRI 8 months later.
At this point my doctor finally stepped up and pulled in all the favors he had and I got an MRI within a week. And I had bone cancer in the spine.
Idiotically he told me that he didn't think it was a primary cancer but it was metastasized from some where else. It's pretty obvious that this would have been prostate cancer but they took another little while to take a PSA test.
Anyway, an answer to your question, the MRI and the CT scans reveal that I have three compromised vertebrae. That means lucency. That means that perhaps 30 or 40% of these vertebrae have bone that has been colonized by prostate cancer. These are no longer active thank goodness, from the triplet therapy. But it is quite likely that I'm at risk at any time for fracture. Which would be catastrophic.
The pain in my back slowly grew on me. And I had a lot of pains in my ribs too. And apparently the pains from masses pressing into the epidural canal, which I had and result in all kinds of pains everywhere because the nerves come out of the spine and going all kinds of places.
Before diagnosis I ended up sleeping and groaning on a hardwood floor at night because of pain.
May I suggest that you need to know or not know. You need to have a decent CT and or MRI to rule out metastasis to your spine or something?
Hi John. Appreciate your taking the time to explain. Your situation is far more complicated than I had imagined. I am getting comparative CTs, which show no progression; will ask for MRI to understand this better. Thanks.
You're right Brendan! I like your positivity and outlook. I guess I felt overwhelmed when we were told there were no more options....only to find out from GP24 that the Marsden is running a CYPIDES trial. Best thing I did was posting my desperation on this forum, rather than worrying about what may happen, I am trying to be proactive in helping Dad.
With a starting PSA of 3000, you have done so well. Wishing you continued success and thanks for the lovely message. Take care of yourself.
What about surgery(laminectomy) to physically free the spinal cord. That was my neuro surgeon did to decompress my spinal cord (t2-t4) followed by 10 sessions of radiation.
Wish and pray for wellness to all my fellow warriors esp to your Dad.
Bless you Jango 🙏 His whole skeleton is riddled with disease and he was able to have one radiotherapy to his c3 which was the location of the compression. That has definitely helped; saw him today and he is walking well but thanks to this forum, I have been able to look heavily into Lu 177 and/or Actinium 225. In process of getting an up to date PSMA PET scan.
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