Hi we are new to this site: Hi my name... - Advanced Prostate...

Advanced Prostate Cancer

11,483 members13,892 posts

Hi we are new to this site

16starsky
16starsky

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

59 Replies
oldestnewest

Did doctors think of local radiation? If he is oligometastatic (that means low burden mets) this could be an option.

16starsky
16starsky in reply to Myriammole

hi thank you for your response, I don't know if he is oligometastic, I will have to ask the oncologist on Monday(what does low burden mets mean?)

Myriammole
Myriammole in reply to 16starsky

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).

16starsky
16starsky in reply to Myriammole

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.

Whimpy-p
Whimpy-p in reply to 16starsky

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.

16starsky
16starsky in reply to Myriammole

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

Myriammole
Myriammole in reply to 16starsky

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.

16starsky
16starsky in reply to Myriammole

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

Myriammole
Myriammole in reply to 16starsky

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.

16starsky
16starsky in reply to Myriammole

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 !

Lupron and Docetaxel were probably the right treatment. You have to see what benefit this had so far.

In the UK there is the STAMPEDE trial and they recently found that radiation to the prostate would probably helpful for your husband:

esmo.org/Press-Office/Press...

So you could ask your doctor for this treatment.

The PSMA treatment is usually done when Lupron is no longer working.

Addition:

Radiation to the prostate for metastatic prostate cancer is now endorsed by NCCN 2019:

threadreaderapp.com/thread/...

16starsky
16starsky in reply to GP24

thankyou for your reply,i will enquire about a STAMPEDE trial, to see if we can join it.

GP24
GP24 in reply to 16starsky

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.

16starsky
16starsky in reply to GP24

thankyou. I will let you know how we get on.

This article explains his early treatment options:

pcnrv.blogspot.com/2017/06/...

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:

pcnrv.blogspot.com/2019/02/...

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.

16starsky
16starsky in reply to Tall_Allen

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,

Thankyou Kim

Tall_Allen
Tall_Allen in reply to 16starsky

Hi Kim-

Please read this, perhaps it is more clear:

pcnrv.blogspot.com/2018/09/...

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.

clinicaltrials.gov/ct2/show...

16starsky
16starsky in reply to Tall_Allen

thankyou for all the info you have sent me, ive found more out in a day on this forum than I have in the last 6months trawling the internet

Kim

Blueslover
Blueslover in reply to 16starsky

Good luck to a fellow Limey.

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!

Hugh

16starsky
16starsky in reply to Blueslover

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.

Hope to get some positive news !

ps where is NC ?

Blueslover
Blueslover in reply to 16starsky

Kernersville near Winston

Whimpy-p
Whimpy-p in reply to 16starsky

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 ...

16starsky
16starsky in reply to Tall_Allen

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)

Thankyou Kim.

Tall_Allen
Tall_Allen in reply to 16starsky

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.

16starsky
16starsky in reply to Tall_Allen

Being new to the forum, not sure how it works, how do I access your post you have just told me about ? Thanks once again for your response

Kim

Tall_Allen
Tall_Allen in reply to 16starsky

I posted on your other thread where you asked the same question. Click on it.

In case you may not have seen them, Kim, these are some selected parts of the Prostate Cancer UK website:

Advanced Prostate Cancer

prostatecanceruk.org/media/...

Newer Treatments

prostatecanceruk.org/new-tr...

Other parts of the site may also be useful, too, e.g.

Face-to-face Support Groups

prostatecanceruk.org/get-su...

Always remember, he (and you) are far more than his disease and the numbers and descriptions on his medical chart. Good Luck in all regards.

Charles

16starsky
16starsky in reply to ctarleton

Thankyou for taking the time to read my post, and reply, I shall go to the suggested sites ASAP

Good luck with the results.

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.

16starsky
16starsky in reply to paulparry

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.

16starsky
16starsky in reply to Amandaking

Yes, ive been reading posts on here for a few weeks, and in one day ive found out more info than I have in the last 6months, trawling the internet.

Thankyou for your reply

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.

16starsky
16starsky in reply to ronronHU

Thankyou for reading my post, and your reply, apparently Germany is a good option as we live in the UK

Whimpy-p
Whimpy-p in reply to ronronHU

You are the king RonRon .. like your style ...

Adam10
Adam10 in reply to ronronHU

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.

ronronHU
ronronHU in reply to Adam10

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

Division of Cancer Surgery,

Peter MacCallum Cancer Centre,

305 Grattan Street,

Melbourne,

Victoria 3000.

O: +61(0)3 9421 6425

F: +61(0)3 9421 6372

Adam10
Adam10 in reply to ronronHU

Thank you for the info.

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.

ronronHU
ronronHU in reply to Adam10

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.

16starsky
16starsky in reply to SuppWife

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!

First, best wishes to you all.

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.

16starsky
16starsky in reply to dadzone43

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

that I can share it

Kim

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🌵

16starsky
16starsky in reply to Whimpy-p

Thanks for reading my post, and taking the time to reply. Kim

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.

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/24/2019 1:24 AM EDT

16starsky
16starsky in reply to j-o-h-n

Yes that's true, im ready for the consultation tomorrow, and will go in with a list of questions, that I want answers to. Thankyou for your input

Kim

j-o-h-n
j-o-h-n in reply to 16starsky

Ready, Fire Aim! and

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/24/2019 2:51 PM DST

16starsky
16starsky in reply to j-o-h-n

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.

Good luck, and especially good health to you to !

j-o-h-n
j-o-h-n in reply to 16starsky

Thank you.

Laughter is the best medicine... and it's free. Laughing is like a mini vacation.

Again -

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 03/24/2019 4:34 PM DST

16starsky
16starsky in reply to j-o-h-n

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.

Kim

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.

16starsky
16starsky in reply to Molman

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,

Thankyou for your reply

Kim

Molman
Molman in reply to 16starsky

Hope the visit went well, Kim. Keeping my fingers crossed for you guys

16starsky
16starsky in reply to Molman

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

You may also like...