Hi my name is Kim and I live in theUK, my husband was diagnosed in Aug 2018 with APC G9, 2 mets to the spine and one to the pelvic floor. also one lymph node (nearby) involved.We are lucky enough to be able to use the NHS here, which we are very grateful for. My husbandwho is 62yrs has had 6 Docetaxel sessions, with Prednisolone 5mg, every day. He also started Prostap 3 straight away and has this every 3 months. The Prednisolne tablets have finished today, and we are due to see the oncologist on Monday 25th March, to see how his treatment has gone.
I ive been reading on this site for a few weeks, but this is the first time I have written anything.
My question is I have read a lot about treatment in Munich with Lu177. But it is only suitable for men with PSMA positive? What is PSMA, also would our oncologist know the answer to that question, or would we need a scan ( already had CAT scan and MRI scan before his treatment started back in Aug)
Also at what stage should we consider this treatment, is it when the hormone therapy (prostrape 3) Lupron, stops responding, ie his PSA starts to raise ? . As you can see, we know very little about APC, but trying to learn from this website I stumbled across. You all seem very knowlegable and would appreciate any info you can give to us at this VERY scary time Although our oncologist is OK hes not very forthcoming with any information, so ive been scanning the internet for answers(Don't know if that's a good thing!) As mentioned before we are using the NHS consultants and treatment at the moment.
Thankyou for taking the time to read this post
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16starsky
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well, that depends, it is not so well defined, oligo means a few, so a few mets, but it depends which type (bone or other), location.... But if your husband has 3 mets + 1 lymph node maybe it could be considered low burden.
With new scans (PSMA for example) they see much more little points than before, so that now I'm not sure what low burden exactly means. What I know is that there is increasing evidence that for these cases an aggressive approach with local radiation (and maybe also radiation to the mets) can give you a better chance.
The approach is changing for a more aggressive treatment with a "curative" goal, or at least to gain quality life time.
i am not sure if it is done after docetaxel, but in this group you will get answer from persons who know much more.
And you need to know first the results of the therapy already done, of course.
If oligometastatic a "curative" approach can be tried if he is in good health (besides the cancer).
thankyou for the info, I will certainly speak to the oncologist on Monday, but he will probably tell me not to get too far ahead(cant help but worry) I liked to be informed so the oncologist dosn:t fob us off with any of the questions I ask (feel like im questioning his treatment decisions ) which im sure they do not like.
Dear 16starsky , Fear of what “could” happen ,and worry just come with the turf.. You can easily be overwhelmed by it all. All of a sudden we need to be scientist and chemist or darn Alfred Einstein to figure out this convoluted disease . No worry . You will always do what’s best . Starsky & Hutch , team work is needed. “ We are all laying in the gutter, but some of us are looking at the stars” Mark Twain .. keep your faith and your eyes in the stars and sky . Peace.
Hi, went to see the oncologist yesterday, and yes my husband mets are low burden, and hopefully we are to be offered radiation therapy in Leeds in the next couple of weeks
Keep me updated. They probably will offer you a combination with some antihormonal therapy. My husband was offered antihormone therapy with radiation, beginning with antihormone. They think there is a synergy between treatments.
Thankyou, did your husband get any nasty side effects from the radiation therapy ? How many sessions is he having ? Im a bit concerned as after all radiation therapy is Radiation, is the aim of this to kill off more cancer cells, Of course we will ask the radiologist when we see her, but no harm in getting a heads up.
Is antihormone Lupron or something different ? hes already on Lupron shots every 3 months
He did not begin yet, because we are waiting for a second opinion (and since we waited already a year, it does not matter to wait some days more, since disease is stable). Antihormone probably firmagon/degarelix, since it is less bad for the heart. We were offered Zytiga as well, but will probably decline. Radiation would be a standard one, so no palliative doses. The idea is to radiate also the metastasis (they did a PSMA PET CT scan plus a detailed MRI to locate them precisely)
We are more worried of anti hormone therapy side effects.
But yes, side effects of radiation can occur. He will continue to take supplements to help, also nattokinase and serrapeptase against scar tissues. These we will check with the alternative medicine department of the hospital.
The point is, doing radiation can give us even a "curative" chance or at least more time. Anti hormone therapy you don't know how long it lasts...
But in your case, you have to check the results first, since you had chemotherapy that could have done a good job.
thankyou for your reply, at least we will know a little about the procedure before we see the radiologist, and see what they offer us. But its still all a bit scary !
You don't need to join the STAMPEDE trial for this. It should be already "signed and stamped" based on the result of this trial that this treatment is beneficial. Just print out the article I linked and take it with you to your next consultation. Ask if the doctor can arrange for this radiation to be done.
Unfortunately, abiraterone (Zytiga) has not been approved by NICE/NHS for this indication.
With his multiple metastases, chemo was an especially good first step. Two recent trials proved that radiation to the prostate is inappropriate for men in his situation.
Here's an article about timing of various therapies:
When his PSA rises in spite of the Prostap injections, he is considered to be "castration resistant" and will be eligible for many more therapies, including radiopharmaceuticals like Xofigo and Lu-177-PSMA-617 (in clinical trials in the UK) and others. There are PET scans (Ga-68-PSMA-11, DCFPyL, F18-PSMA-1007, etc.) that check to see if the tumors have enough Prostate-Specific Membrane Antigen (PSMA) - a protein on the surface of about 95% of prostate cancer cells. if you decide to go to Germany for early PSMA-based radiotherapy, they will give him a PSMA-based PET scan first and after treatment to monitor its effectiveness.
Hi Tall Allen, hoping this reply has not been sent twice. Thankyou for all the info you have sent. and ive tried to read the articles that you have send me, a bit above my capacity to understand a lot of the technical terms.
You said that radiation was probably not a good option for my husbands condition, could you elaborate please.But zytiga may be better if we can get it ?
Also I have looked for trials in the UK for Lu-177-PSMA-617 without success, can I ask where you found out from, for future reference.
As you can tell we are completely new to all of this and know very little, I would appreciate ANY advice you can give us,
Zytiga as been found to extend survival in newly diagnosed PCa, regardless of number of metastases (as explained in my article). It gave equivalent results to docetaxel. It is not approved in the UK until there is evidence of castration resistance. The survival benefit is lower then.
Please feel free to ask questions, either publicly or with PM.
There are several sites in the UK listed in the following. They are randomized, so he has a 2/3 chance of getting the radiopharmaceutical. They require castration resistance, and he must have tried either abiraterone or enzalutamide.
I'm in NC, surgery in 2008, now oligometastatic and on Lupron. Been reading for years, but have a lot of the same questions as you do. Things are improving and changing thank God!
did reply yesterday but internet acting up.Thankyou for your reply, Off tomorrow for news of chemo treatment (6 sessions) also on Lupron every 3 months.
Great job Kim. Most doctors don’t give us much time for Q&A .. good for you to find out here for yourself. Knowledge can eleviate the fears .. HU is the source.. Take care of your self while supporting him .. I think care givers have it worse than the patient. Be kind to self ...
Hi Allen; we went to see our onc yesterday and the results to the 6month course of docetaxel were very positive, and now hopefully will be offered Radiotherapy (EBRT) whatever that is, I know its aimed at the Prostrate, but its not for mets in his spine, Can other radiation therapy do anything for the bone cancer, as Im told that once cancer gets to the bone it cannot be fully cured? is this correct, and why is it not curable , his mets are low burden. Grateful for your knowledge of this disease, you seem to know an awful lot (good job for people like me, who know very little)
I just posted why it can't be cured - but it can be controlled, hopefully for a very long time. Irradiation of the mets is controversial - no one is really sure whether it accomplishes anything long-term. However, it may prevent later pain and spinal compression, and may require only a single zap. On the other hand, radiation is especially toxic to some vital organs, so where they are has to be assessed with care.
Following Docataxel then they will probably try further Androgen blockers such as bicalutamide, flutamide and enzalutamide. Its possible to have Docataxel again ir maybe cabazitaxel.
As far as I am aware there are no current trials for LU177 as they were all completed 2018 but use has not yet been granted in UK.
The PSMA test isnt available on NHS as I have asked but can be done privately for about £1500.
Treatment is available in Germany in a number of locations. However Radium223 is probably an option before LU and even Actinium.
Radiation to the prostate itself is also an option and a recommendation now in the uk.
thankyou for taking the time to read my post, and for all in info you have sent me. Being a complete novice at all this, we need all the help we can get
Hi - my husband had a PSMA scan in the Wellington private hospital in London last year. We were referred by the oncologist and it cost £4,000. Good luck and keep reading this site it is a fantastic source of information.
The least expensive 68Ga PSMA PET/CT scan that I am aware of is at Peter MacCallum Cancer Centre in Melbourne, AU. It was $2650 at UCLA and only $600 US dollars in AU and included a DVD plus the doctor's interpretation. The savings more than paid for my trip which I considered a bonus since I had never been to AU and got to enjoy a brief vacation.
Thanks for posting this information. I need a PSMA PET/CT scan and am not covered by NHS in UK as I’m non resident (even though I paid my tax for 35 years!).
How did you go about booking it? Are you an Australian citizen?
I work in the Midfle East at the moment so am about a third of the way there.
I am an American living in Thailand and Dr. Declan Murphy arranged the scan for me. Here is his contact info: Associate Professor Declan G Murphy MB BCh BaO FRACS FRCS Urol
Urologist, Director of Genitourinary Oncology | Peter MacCallum Cancer Centre
I am British and will retire to Thailand later this year or next year.
Prices are hideously expensive in UK. I was hoping Thailand’s reputation for a health tourist destination might be a solution for me but obviously not as you had to travel to Melbourne.
We have many Brits living here and our health care facilities are actually quite adequate and reasonable. Bumrungrad Hospital in Bangkok is considered to be one of the best hospitals in all of SE Asia...a bit more expensive than some other private facilities; however, still far, far less expensive than America. I could have gotten the scan here, but my Medicare Ins covers nothing outside of the US. Peter MacCallum was the least expensive out of all of the worldwide hospitals that I checked on. Since I was going to have to pay for the scan myself, airfare and the scan amounted to only $1300 US which was kind of a no brainer. Hope to see you soon in Thailand!
Welcome to this site. I have gained more information here than from any of my husband’s doctors. It has been invaluable. My best wishes to you and your husband. I hope his appointment goes well and results are all favorable.
Thankyou for your reply, I also have gained valuable info from One day on this site, than in the last 6months, I shall def keep reading , I don'tknow where some get all the info from, must be searching all the time, to keep the likes of me informed as I wouldn't have a clue how to go about it!
Second, Dr Brian Lewanda posted the most up to date overview [integrativeoncology-essenti...] of treatment options on You Tube. Darryl has referenced the video on the Healthunlocked site.
Third, no need to rush to a decision. Happily there are many options and you can spend some time studying how well they match you and your family's needs
Fourth, the many responses show what a rich source of health this site us.
The power of this site is the wealth of information and experience it offers. A caution: contrary to your oncologist this site may provide a confusing avalanche of information. You still have to sort through it.
Although I replied yesterday, my tablet was playing up, dosn;t look like my message reached you ? Anyway thankuou for your reply, Yes I must admit I am a bit overwhelmed with all the info, but forarmed is forwarned , so Im trying to take in all that I can.
There are so many people on this site that know so much, and grateful
Sorry to hear the monster has started on another brother. Stage 4 here August of 16. I asked mt oncologist about those kind of treatments and he said that we would wait until I became castrate resistance or when the current meds. Xtandi. Quit working. There are a lot more knowledgeable people on this site so will stop with this. 🙏🙏🙏🙏
Although I replied to you yesterday the internet was playing up and I don't think that you received my reply?Anyway thanks for reading my post and taking the time to reply.
I also believe that we shall get the same answers from our oncologist tomorrow, but I am going in armed with a list of questions I want answering. I will def continue to visit this site to keep me up todate.
Kim
Thank you for posting. Welcome to the group. I can’t answer your questions so I will just welcome you .. Scott🌵
Greetings, Quote: "the oncologist doesn't fob us off with any of the questions I ask (feel like I'm questioning his treatment decisions ) which I'm sure they do not like." Unquote.
The only thing I can suggest to both you and your husband is: Doctors get paid, so who gives a fork that the doctor will have a shitfit regarding your questions. It's your husband's life, not theirs. So speak up and don't worry about their feelings, worry about your own.
Thankyou, I will.I have noticed you always have a witty reply,its a good job someone can bring a sense of humour to this awful situation, that all you men on the site have to endure.
I don't seem to laugh much these days, but your words do bring a smile to my face-thankyou. Im hoping when we see the oncologist for our first results, I will have a big smile on my face when I walk out the door tomorrow. Fingers crossed.
Wishing you all the best. It's a jungle of treatment possibilities and we often don't know which is the best for us. What I find useful is that I make a list of questions related to the treatment, and make sure that you know a little about your questions, especially if they are related to certain treatments. I had an oncologist who told me to start chemo or go somewhere else for treatment. Anyway, good luck on the 25th. I hope it comes out ok.
Yes I have my 'Little Book'ready for tomorrow,, and you are correct there is an enormous amount of info on this site,We should know 'where we are' after seeing the oncologist tomorrow, and will keep everyone informed,
Yes the news we had was very positive, my husband has responded verywell to the chemo, and will hopefully now be offered radiation therapy (couse of 6over 6 weeks) Still on Lupron foever, a bit concerned that his PSA level had gone up from 1.5 to 2 in the last Month. The oncologist wasn't concerned, but does anyone know of any supplement's that can lower PSA levels and work ?
Hi and welcome, Prostate specific membrane antigen psma is the serum or chemical used to detect mutant or cancer cells in or prostate or peripheral glands. Your on the right track, there's a lot of info so try not to ne overwhelmed. I think your on a great location to access t the cutting edge of care with this challenge. Remain positive diligent and don't forget to enjoy yourself, this is likely NOT the end, keep pushin
Thankyou for your reply, as you say, there are that many treatments out there that it does become overwhelming, but knowledge is power, and I intend to learn all I can on this forum
Thanks again
Hi , I just stumbled onto this first post . Two years wow! Time flys when we’re having fun!❤️
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