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SRT Starting, but PSA doubling

User
Posted 15 Nov 2018 at 12:31

Hi, i started a different conversation for this. Just a quick recap, RP operation in April, PSA end May <.03, PSA Sept 0.11, Oct 0.16 and now Nov 0.29, so just recently it has doubled.

PSMA PET Scan with F18-1007 found cells in prostate bed, SRT starts on Wed next week Nov 21 for 35 sessions.  Given the newer research says that with a PSA under 0.7 they will not start hormone therapy and will wait for results following SRT as there is little difference in outcomes unless proven that it has spread. I went for the CT setup and planning yesterday, and again they looked at the CT for anything , but as expected didn't see anything.

Obviously my vegan diet is not working, so might not be as strict there.  I was taking Cialis of 5mg per day, but not doing too much here so I likely will stop this, but also some other people advised to stop this because it is known to increase the T-Levels and right now you want to ensure you are not working against the RT, especially if it doesn't do too much.  I am very concerned about the last leap of PSA, which concerns me that there may be other areas of spread but don't know until after the RT.  Is it even worth checking PSA levels during RT as they vary an amount and even after 2 years they don't settle down, although a continues increase would be cause for concern.

Thanks as always for all the comments

I would recommend doing these F18 PSMA-PET scans however, they are so advanced now it seems with the latest stuff they use and hopefully they become standard practice such as the mpMRI prior to diagnosis since it gives you a better chance of what is going on, perhaps not complete but a good chance.  They are starting to see an increased trend of picking up low PSA as they refine this product too.

User
Posted 16 Nov 2018 at 19:23
Lyn. Interesting that F18 Fluciclovine (FACBC) is being trialed in Leeds but I believe this is not the same as F18 - 1007 midcentury had in Heidelberg and no search I can find connects these scans.

Lauri. Yes the massive German Cancer research Center DKFZ and now with the nearby National Center for Tumour Disease along with the many collaborating hospitals on the very extensive campus provide world leading research. and treatment, Had my RT there and with follow ups and initial preparatory visit must must have spent some three months there in total. Everything was well organized and it was always a joy to visit such a beautiful city.

Barry
User
Posted 23 Nov 2018 at 12:02

Well, my other appointments have been at different times each day now and in the late evenings which is not so pleasant as its quite a trek back on the trains, oh well, small things in life I guess, grateful for a another chance here.

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User
Posted 15 Nov 2018 at 20:00
Cialis does not affect testosterone; I think you have been given misinformation there.

Personally, I am gobsmacked that you are not having hormone therapy with the salvage RT - not sure what research they are referring to but all the recent research is that the longer you have HT with the RT the more likely you are to achieve remission.

As you say, PSA tests won’t really tell you anything during the radiotherapy; you should hit nadir about 18 months later.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Nov 2018 at 20:15
Holding off systemic HT is a good thing when the scan has only shown very local cells in the prostate bed. Why attack the whole system when localised SRT may be all that is needed , and QOL will be immensely better. I’ve had two PET with no-show and psa expected over 100 in jan. My Onco refuses to treat something that is psa based alone with no physical evidence, but he also knows QOL means the world to me. Sounds a good move to me , and the longer you hold off HT sometimes the better !

If life gives you lemons , then make lemonade

User
Posted 15 Nov 2018 at 20:39
@LynEyre

There is confirmed research now that with a PSA of under 0.7 SRT with HT provides no observed additional survival benefit or recurrence benefit than SRT by itself. This changes above 0.5 and significantly with a PSA of 1 of 2 and above. And thus starting HT if the SRT doesn't then work is their proposed method. Of course that would change if the PSMA noted any other lesions. Pls find link I saw on this too, and there are other studies similar to this in the US.

http://www.elsevierblogs.com/eururo/calculus-of-adding-adt-to-salvage-radiation-in-prostate-cancer/

User
Posted 15 Nov 2018 at 21:40
@LynEyre What I have read for Taladifil which is the generic cialis, is that it prevents or inhibits the enzyme aromatase to convert testosterone to estrogen, thus increasing the testosterone to estrogen ratio. So you have indirectly increased Testosterone and reduced Estrogen as a net result and changed the balance. And it may not affect all men the same of course

Now I am not sure if this is good or bad really.... !

User
Posted 15 Nov 2018 at 21:46

I agree @ Chris J, on the QOL and glad you are maintaining this. I still feel as if I'm wandering into the unknown here, but that seems the case for many.  Thank you both for your comments, it really helps

User
Posted 15 Nov 2018 at 22:41

I was surprised that you had a F18-1007 PSMA scan as I am not aware of this being offered in the UK but then looking at your profile I see Germany which rather explains it. Seems they are also trialing the US developed F-DCFPyl PSMA scan presently undergoing larger trials in the USA and Canada.. I agree it would be helpful in many cases to have these more advanced scans more widely available but in the UK there are only a few facilities offering the 68 Gallium PSMA scan which the previously mentioned two may supersede. http://jnm.snmjournals.org/content/early/2017/04/12/jnumed.117.190157.full.pdf

 

Wish you well on your PCa journey

Edited by member 15 Nov 2018 at 22:41  | Reason: Not specified

Barry
User
Posted 15 Nov 2018 at 22:58

Thank you @Old Barry. I had to pay since it wasn’t covered by my insurance but worth doing it And cheaper I believe than the Ga-68 tests.  The team doing this at Heidelberg are world renowned with developing these tests so Im grateful I had the chance to See what was happening. It just took a long time to schedule as there are many people doing this 

User
Posted 15 Nov 2018 at 23:16
Barry - F18 FACBC is available at St James's, Leeds as part of a trial

midcentury - if Cialis had any significant impact on testosterone, I don't think doctors would be able to prescribe it on the NHS to men with PCa, and we would see a lot more recurrence on this forum! The Uro report that you have linked was small scale and based on men who had their SRT 15 - 20 years ago. It might be being taken quite seriously in Europe but not so in England where all the messages seem to be to get men on salvage HT for 2 or 3 years rather than the older format of 6 months.

If the research you have linked turns out to be reliable, it makes me feel better about my husband stopping his bicalutimide early since according to the research, it made no difference to his outcome!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Nov 2018 at 00:20

@LynEyre

 

Please look at the following link.  This is the American Society of Clinical Oncology

http://ascopubs.org/doi/full/10.1200/EDBK_200319

 

Here they give a fairly detailed review of treatment citing studies which might give you some broader perspective and why the UK and or other countries are choosing their ADT strategy, namely nothing is definite.

But I am concerned yes if I should be on ADT too, and only recently realised the UK strategy was so different so it is a worrying concern

On the Cialis part you are quite correct, there is little evidence to suggest that it adversely affects the PC, so yes for sure you would need to have a full-scale funded study to prove this and not recommend such drugs. 

Edited by member 16 Nov 2018 at 00:27  | Reason: Not specified

User
Posted 16 Nov 2018 at 00:39

@Lyn I think this refers to the same study I mentioned before and provides German guidelines.  Germans are more conservative and less aggressive, not sure if good or bad.  But remember that this was recently released and was a 13 year study hence the older date, in order to measure statistical outcomes.  SRT might have improved over this time of course and so might second generation ADT plus the scans were also not as modern then either

https://www.ncbi.nlm.nih.gov/pubmed/29383406

User
Posted 16 Nov 2018 at 01:19
How much did the PSMA test cost in Germany?

In UK it’s around £2600 at the very few facilities that offer it. I have read you can get one in India for around £500, so a trip to the Taj Mahal might be in the offing if I ever suffer recurrence!

Cheers, John.

User
Posted 16 Nov 2018 at 08:09

John, €1200 so quite reasonable on a relative basis and if you take into consideration travel costs which If booked ahead can be affordable. 

User
Posted 16 Nov 2018 at 16:12
I would say that this study like most of them raises more questions than answers. I see nothing in there that suggests that adding a treatment with relatively non-permanent and non-disabling side effects could / should not be used if nothing else on a better safe than sorry mindset.
User
Posted 16 Nov 2018 at 16:57

Yes more questions as usual. As anyone tried this new combination hormone therapy set of 2 drugs based on this new study in 2017? And with SRT too

 

 

User
Posted 16 Nov 2018 at 17:41
Which 2017 study of which 2 drugs? I can't see that anywhere in the links provided?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Nov 2018 at 18:09

Lyn

It looks promising if nothing else 

https://www.independent.co.uk/news/health/hope-for-20000-prostate-cancer-patients-after-worlds-biggest-treatment-trial-a7770871.html

User
Posted 16 Nov 2018 at 18:19
This is just the latest phase of Stampede - quite a lot of members here have been on it. Not relevant to you though :-(
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Nov 2018 at 19:23
Lyn. Interesting that F18 Fluciclovine (FACBC) is being trialed in Leeds but I believe this is not the same as F18 - 1007 midcentury had in Heidelberg and no search I can find connects these scans.

Lauri. Yes the massive German Cancer research Center DKFZ and now with the nearby National Center for Tumour Disease along with the many collaborating hospitals on the very extensive campus provide world leading research. and treatment, Had my RT there and with follow ups and initial preparatory visit must must have spent some three months there in total. Everything was well organized and it was always a joy to visit such a beautiful city.

Barry
User
Posted 16 Nov 2018 at 19:27
I was listening to a bunch of TEDx talks about cancer on my daily walk (sad I know) and ine talk discussed there are a lot of potentially good treatments blocked in the research phase for political / perceptual reasons and lack of funding.

Ruthinium is a good example. It is a ferrous uptake inhibitor or some such and works like chemo but only becomes toxic inside the environment of a cancer cell. Because it is a heavy metal in name though it is not getting the love it might otherwise deserve.

The talk also mentioned the use of crowd sourcing to fund research which was an interesting take.

User
Posted 16 Nov 2018 at 20:30
That's why my family do so much fundraising for a brain tumour charity - as a charity, they are free to work with university research departments on things that the big corporates are not motivated by. There has been massive progress on the potential of injecting the cold sore virus into brain tumours, among other things. I can't say the same for PCUK - we do a lot of fundraising for them but more to support their lobbying of government than for any ground-breaking research activities :-/

Hi Barry, no I couldn't find a link either - but Mr B was hopeful that he could get John on it if we need to. I just think it is interesting that we have so many new tracers coming online in a relatively short period.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 22 Nov 2018 at 15:30

First RT session yesterday and all went well for number 1. At least I didn't have a panic attack!, 34 to go now :-)  They told me in their planning they will use a higher boost for the PSMA identified area, and normal for the rest of the bed on each session.

i was reading previous comments about SRT and the group of people you meet.  Then I was reading some of the hospital advisory statements about how long each session takes.

When I started here, they gave me an exact slot and told to arrive then, drinking water on the way,Im thinking. I didn't see anyone patient wise really apart from the RO and the team doing the scans/RT and then when they made the next appointment it was for the next evening and then the following day in the morning.  They said it would settle down to a regular time slot in the next week.  But they run the sessions from 0700-2200 every day and they give you slots at 15 min intervals. So you are there for 15 mins and out.  I thought a little weird reading  some other reports such as where you drink the prescribed water when you arrive and then wait, perhaps with a group of other folks.  This of course sounds really German but it does sound a little different and very time-slot driven, or perhaps this is normal, who knows. 

Given I enjoy this through Christmas I get to come on Saturdays too due to the Xmas holidays taking 3 days.

User
Posted 22 Nov 2018 at 19:41

Maybe that will end up the same for different times, sinfe they aeem to have many patients. But I don’t get an enema though, strange how that varies from place to place.

User
Posted 23 Nov 2018 at 12:02

Well, my other appointments have been at different times each day now and in the late evenings which is not so pleasant as its quite a trek back on the trains, oh well, small things in life I guess, grateful for a another chance here.

User
Posted 03 Dec 2018 at 18:18

Day 9 treatment finished today. i wondered about a couple of things. I realised today different people are in different machines here prostate wise, never thought of that before.  Mine is like a CT scanner which they call Tomotherapy, so you slide in this thing, it does a CT scan and checks and then you start. But others are using a LINAC, which rotates around you. Wondered why different people are in different machines? I did some research but they all seem to have the same outcomes. Perhaps they choose differently depending on if you have a prostate or not?

They seem quite relaxed about food, and having a wine or beer now and then, How things differ from place to place?  

User
Posted 03 Dec 2018 at 22:20
I think both methods use a Linac to generate x-ray photons of sufficient energy.

The method of delivery is slightly different. I think Rich12 had tomotherapy.

I’ve scanned a few articles and think they are telling me (as you have also concluded) that outcomes are similar for tomotherapy and Rapidarc.

Others will hopefully come along and add to or correct what I have said.

Ian

Ido4

User
Posted 05 Jan 2019 at 17:11
Hi Mid

Just womdering how you were getting along?

PP

User
Posted 09 Jan 2019 at 23:00

Hi Pete

 

Thanks for asking. My last session is tomorrow, yayyy!  It hasn't been too bad actually side effect wise and a lot better than i thought it would be.  Having said that I wasn't on HT at the same time as you and others were, which probably made it a lot easier. I have been feeling tired more recently, especially after exercise and in need of a short nap - but nothing too bad, and with a little more frequency in the plumbing areas. I think I have more abdominal pains, which come and go and it sometimes feels as if someone has twisted your internals a little bit. Hopefully this doesn't get a lot worse in the weeks ahead following the SRT.  This SRT went through the Christmas period and New Year, and the hospital RT team shut down for 4 days over Xmas and 3 days over New Year (thats Germany for you), so I had to go on 3 of the Saturday's as well so it didn't make the breaks too long.

See the RT Oncologist tomorrow and then not sure when the first PSA test will be.  Living in dread of that of course, since you never know. Definitely taking a break or month off in February after this, although I think the Xmas break allowed me to manage this whole treatment more effectively travel wise and my family members came with me some days which made it a lot better.

Are you feeling better now and more back to normal? When do you have any of the further tests.  Hope all is well your side!!!

 

 

User
Posted 01 Feb 2019 at 10:57

Hey Mid

Apologies for not replying earlier/ I am plodding along. Had my blood taken for my first post SRT review today. The bats are flapping around my belfry causing unwanted noise as a result. Hey ho.

How are are you doing after the RT? Hope you have it had too many side effects. Any news on when your first PSA test will be?

Edited by member 01 Feb 2019 at 11:31  | Reason: Not specified

 
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