Has RT Failed

I thought I would give an end of the year update as I have now finished my 6 cycles of Chemo and having a break until next year to let the side effects improve. The trend is still downwards so a positive note to end the year on.

26/07/2017 PSA 5.7

28/07/2017 Chemo#1

17/08/2017 PSA 7

22/08/2017 Chemo#2

07/09/2017 PSA 7.4

12/09/2017 Chemo#3

28//09/2017 PSA 4.5

03/10/2017 Chemo#4

19/10/2017 PSA 3.5

24/10/2017 Chemo#5

09/11/2017 PSA 2.5

14/11/2017 Chemo#6

14/12/2017 PSA 1.3

Wishing you all a very Merry Christmas and a Curative New Year

Roy

Hi Roy,

Sorry to hear about your latest PSA rise, My thoughts about HT are exactly the same as yours, not fun !!

I had a little dig around and found the below  , hope you find it helpful, it was published May last year.

Si

"As usual, we are confronted with a new contradiction. It has been believed that earl hormone therapy (ADT) in men with a biochemical recurrence (PSA only) would benefit from immediate ADT. A study released from the Harvard School of Public Health contradicts this assumption, but the study lacks follow up beyond 10 years.

They evaluated 2,012 men whose prostate cancer relapsed, those who delayed hormone treatment were no more likely to die over five and 10 years than those who started therapy immediately. “For both groups and both outcomes, the survival is very similar,” said Xabier Garcia-Alben, an epidemiologist at Harvard and a study author. The researchers used a 14,000-patient database from the University of California at San Francisco that tracks men with prostate cancer to assess the benefits of therapy.

The results were released yesterday and the actual data will be available for review at the up-coming American Society of Clinical Oncologists (ASCO) meeting.

In the study, 85.1 percent of men who started treatment immediately survived over five years, compared with 87.2 percent who delayed therapy. Over 10 years, 71.6 percent of men in both groups were alive. These numbers do not reflect a statistical difference.

William Oh, M.D. from Mount Sinai Hospital in New York said, “What this suggests is we probably pull the trigger on androgen deprivation therapy a little too soon,” Oh said in a telephone interview. “Nobody’s ever shown that starting right away makes any difference. The sooner you start it, the longer they’re on this therapy.”

I hope that the study will continue so that we can get a better understanding of an even longer time period. Prostate cancer takes many years to kill a man and the data from 15 and even 20 years might tell a different story"

And yet I got Enzo before having to have chemo but they won't give it to you until after chemo! As the cousins say, "go figure".

Docetaxel. If I hadn't contracted pneumonia I'd say it was well worth doing.

However, I did get pneumonia and the last 11 weeks have been the worst of my life.

If last November I'd have known what was going to happen then would I have gone ahead with it? Probably not, but this would have meant a shorter life span.

If I recover from the effects of pneumonia in the next few weeks then I'll probably have a different view.

Bottom line is, respect days 8 to 15 in each cycle when you are likely to be neutropenic and do your utmost to avoid any infection.

Hoping that you get the best treatment and I guess as ever you have to makes waves to be seen sometimes. All the best

Roy

Sorry to read of your PSA increase.

A post difficult to respond to but I have to type how I see your situation..

My thoughts on PET and all scans remain the same – certainly some can identity cells which others may not so they have in some instances a high value. However I can’t see how any scan can pick up cells already mutated but not yet at the mutation level that will show on scans. Thus I don’t see it that RT failed as such just some cells out of RT range were just at the early stages of mutations so couldn’t be picked up.

On a brighter note you take the view HT is control rather than cure – certainly a valid point. Against that is the thought HT can indeed kill cells off particularly at their early stages.

I guess I’m trying to say you could continue to have scans and find some way to see a particular hot spot off in the hope that’s it or accept that either now or at some point in the future longer term HT might be your best longer term control or even cure option?

Not the best of news so hopefully your consultant will have a better way forward.

Good luck

Ray

Hi Roy, thinking back to past members whose radical and salvage treatments had failed, I think the PSA reaching 2.0 tended to be the trigger point for discussing the commencement of long term or intermittent HT. Not so long ago there was quite a discussion on here when the onco had told Bri that HT wouldn't be introduced unless the PSA hit 20. My dad is currently around 1.6 and is reluctant to accept defeat until it reaches 10 although, who knows, my nerve might not hold out that long and I am impressed by the stories of people like George & TopGun whose use of hormone holidays seem to work well.

Sorry Roy, I just assumed the onco had accepted that your treatment had failed. My understanding was that with no prostate, anything over 0.2 was confirmation that PCa cells are active somewhere. I think if you get another rise and the specialist still doesn't think it is a problem you should consider getting a second opinion.

Rob, normally I would agree with you about waiting to 10 but Dad is 78 and very busy so he has made a decision that HT is not a place he wants to go. He of course will be slightly swayed by how Stan approached his disease.

Also, we are hearing more now about hospitals using 20 as the trigger for commencing long term HT once radical treatments have failed although I presume there will be some financial motive there to muddy the waters.

Just seen my latest PSA score online, it's risen now to 2.1 which I had already calculated as the doubling time seems to be consistent at 1.8 months so will see my Onco on Thursday to plan the next step which I assume will be a PET/CT scan to locate the area concerned. The thing that concerns me is that at my last appointment, my Onco was adamant the RT would have been successful in the area that was targeted so where is it hiding? And why is the doubling time so consistent if the initial cancer has been treated successfully, I just can't help but think the IGRT may have missed the target, but I suppose the scan will answer that. Just like anyone on here every ache and pain is associated with PCA in our minds but I try not to assume things until I get proof.

I must admit it is difficult to remain positive with results like this and inside I am screaming, but put a brave face on for the sake of others close to me as they get upset if I say what I am thinking, so I can only be open with people on the forum who know what we are all going through at times like these.

So if anyone has any ideas or comments, or questions I should be asking feel free to post.

Roy

Hi Roy,

Like Bri I can't offer any advice but I just wanted you to know that I am reading your posts and thinking of you. Good luck for Thurs.

BFN

Julie X

I saw my Onco today and the plan is to have a PET/CT scan and take it from there, so not much to report. One thing he did mention which I questioned was when to intervene with the hormones, his opinion was to leave them out of the equation for as long as possible, but with a cancer acting quite agressively I am not so sure, but that's a discussion for another day when the results are in.

Thanks

Roy

Hi Roy,

At last a date for your new scan , I have everything crossed for you. I agree that with the old forum we could see how many people were reading our posts and now we have no idea .  

At least you know that I am reading. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-wink.gif. 

BFN

Julie X

Roy I'm hoping the results are not as bad as you are anticipating. Easy for me to say but we know how easy it is to put every ache and pain down to the PCa.

Let us know how you get on mate

Bri

Hi Roy,

Well at last the scan is done and know for the wait for results life never gets any easier does it. The waiting always seems to take forever . I certainly know what you mean about every ache and pain being attributed to the pca. On the outside I look calm and incontrol underneath the water I am paddling like a very manik duck every time Trevor sneezes.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif.

Funny how the voice of reason is so easily drowned out by the voice panik.  

BFN

Julie X

Sorry to hear this latest development Roy...but it sounds like there are still options to try and get shut

Keep kicking it's ass mate

Bri

Sorry we will not be seeing you Roy, i will print off your post and get Jamie's take on it.

All the best

Si

I have always said your research and knowledge is top drawer. I have just sat and watched the video 30 mins of amazing information, incredible scan pictures and a very clever and pioneering man. It really does give enormous hope to anyone with access to a choline pet scanner and a brave and forthright oncologist.

I found the video a bit frightening as well as enlightening, it all sounded so very straight forward and made me think whay have we not seen so much more progress in treataing even advanced forms of PCa to give men a chance of remission.

I guess this is all a bit too much for the budgets and constraints of the NHS though.

I suspect this video and its content may form a big topic of coversation at MOS this weekend.

It is probably the first thing I have seen that talks about treating advanced disease that also provides a heads up for those who are doing great at the moment but may get progression in times to come.

It seems to suggest the answer to your question is yes the level of PSA has a direct relation to the amount of spread. Especially if you look at the case of the 40 year old with a PSA of 25000 .

Thankyou so much for sharing this

wish you could have been at Leicester

xx

Mo

Hi Roy L,

 I finally received the results of my PET scan this week. Not bad for one that was (allegedly) requested in January and took place in March!

  Like yours, mine was a good news/bad news result.

It appears that the bed of the prostate is clear (I have had both RP and RT)

However, one lymph node was (I think the term the urologist used ) 'glowing' indicating the presence of PCa. This, I was told is likely to be the source of my PSA of 0.7

He did reel off a name but it went in one ear and out of the other but apparently it's by the junction of the main body artery and the leg artery.

The urologist said that a removal by him would be difficult with no guarantee that the correct node would be removed.

I am being referred to a oncologist to see whether RT would be feasible.

Best wishes,

Dave

 Hi Roy,

I feel I can relate to that.

When my PSA rise after RP continued, the urologist referred me to the oncologist, with a view to salvage RT, stating that; "I'll leave it up to (oncologist) to decide whether to give you a scan beforehand"

At the time, I didn't think too much of it, cobblers sticking to their lasts and all that. But on reflection, I'm not so sure.

If it was a case of 'Should I or shouldn't I send him for a scan?" I would think that the reasonable action would have to have proceeded with a scan - especially as I was going private so there should have been no financial down-side for them.

On the other hand, my RT treatment was NHS, was the decision not to scan beforehand (apart from normal pre-RT checks) made on financial grounds?

In the event, I had my RT and my PSA didn't change. I now wonder, based on my recent scan which showed no PCa on the prostate bed, whether my RP was successful and in fact my prostate bed was clear of PCa because of the previous operation and that the PSA result was coming from the 'glowing' lymph node.

Of course it can only ever be guesswork, but was not only the RT on my prostate bed unnecessary but having had it, does it now disqualify me for RT on the node?

It's not something I dwell upon too much, what's done is done. And as I say, only guesswork but I mention it because I believe all info on experiences may benefit by being shared.

Dave

Edited by member 23 Jun 2015 at 08:41  | Reason: Not specified

Dave,

I have an appointment with the Marsden on 23rd Sep and will take the opportunity to ask about the SABR Roy is having and the thinking on further doses of radiation after a man has had it as a primary treatment. (When I first considered RT at the Marsden back in 2007 as my primary treatment I asked if I could have a higher dose than the 74gy given in 2gy fractions recommended by NICE, as I read that higher doses gave better results, albeit with greater risk of more severe side effects. This request was refused.) It could make a difference as to where the cancer has spread and how much radiation this area has received previously or the thinking may changed or it may be this would be considered on a case by case basis. Clearly, there must be a point beyond which further RT will become unexceptionably dangerous. I will post what I am told at my consultation.

Great update - I hope it all goes smoothly

Hi Roy,

   Very good news about the SABR, especially as cyberknife seemed to be ruled out for you earlier.

I have finally go the go-ahead for SABR at Mount Vernon (it was dependent on the results of both a PET/MR and subsequently, a MRI showing no other spread apart from the 'glowing' lymph node which will be treated)

So I'm pretty well at a similar stage to yourself, waiting for the planning results.

Dave

Hi Dave,

Pleased you have also got the go ahead for SABR. It seems that this treatment is available at several centers so worth looking into by others. One of the earliest facilities and now a major one is at Leeds :- https://www.elekta.com/press/e6303969-7835-4f4b-9174-7d46d46d9283/elekta-s-versa-hd-rapidly-enters-service-as-ideal-system-for-stereotactic-radiotherap

Hi Lyn ,
Your inbox is full ( oh to be so popular )
In short I was told my Choline PET would only be really effective with a PSA of 3 or more. They pre-booked mine but my PSA was 2.2 at the time . They still think it might have been too early to see any spread which they still suspect .
Best wishes
Chris

Roy

You show great spirit Roy and that's half the battle. All the best for the future
Chris

I'm sorry things are difficult for you. I really hope they can come up with some long term treatment for you. I shall be keeping my fingers crossed for you.

All the Best,

Steve

Edited by member 17 Jun 2016 at 11:03  | Reason: Not specified

I can't offer any advice re treatment but just wanted you to know that I am thinking of you, plus we both have our dogs as avatars.🐶

BFN

Julie X

Keep fighting Roy. Can I ask, why didn't you go on HT in Dec when the PSA hit 16

Bri

My response seems to have disappeared, so I will try again. Initially as part of the trial I was required to come of hormones so that they could gauge the response without them skewing the results. When the rib was treated the PSA after 3 months was only 2 points higher so it was decided that we leave out the hormones to see if the activity was still coming from the rib and it had been slowed down by the treatment as that would have shown a doubling time of 1 year. I must admit I didn't want to leave hormones out of the mix at the start and would have rather continued with them reigning in the cancer until it became hopefully undetectable then to come off them to see if there was a rise, as I believe it would have been a more logical approach but I had to adhere to the rules of the trial.

Thanks

Roy

Thanks for the comments. As regards Chemo I am not convinced it will be of much benefit to me but I will listen to his take on it. As you know I have preferred to take a more targeted approach to this so I need to now how many areas are affected to formulate a plan forward if possible. I am not the type of person to just follow the so called "Gold Standard", as very early on I realised it was just a another NICE way of saying cost effective (if you forgive the (pun) so I think it's time to think outside the box as this not a condition that lends itself to a "one size fits all approach". I know many will disagree with my thought process, but even now I do not have any regret in the path I have taken. Since I travelled to Munich I always wondered if the PSMA gallium or even Choline could be utilised as a "Trogan horse" to deliver a killer blow to the cancer as it is so readily taken up by Pca, and now I am aware of this happening in Germany and Australia which I have posted on the forum before, so I will be showing my Onco the trial results and ask his take on this approach or whether Radium is the way to go as this only targets the bone and is less destructive.

Thanks

Roy

Highly disappointing news. Had it not been for the node involvement, as the SABR did a goog job on the left wth rib it might have been worth considering the same treatment for the right counterpart even if you had to fund it. However, as you intimate, the node involvement would now indicate that systemic treatment would be more appropriate and if adopted will hopefully deal with the cancer wherever it is.

Hope further news will be more encouraging.

Roy

Very disappointing especially as you have fought so hard, keep doing that.

Good luck.

Ray

I saw a different Onco yesterday and it seems that they are advocating chemo which as you know I am not in favour of, they state the statistics of early chemo ( I am nearly five years into this journey) as they class me as new, due to the treatment path I have chosen and seemingly being responsive to hormones. For the first time on this journey I am at a loss, as all that is being offered is standard care so any ideas would be greatly appreciated as it seems I will managed now with no attempt at ridding me of this. One thing of note I have gleaned from my last two conversations is that something is about to be announced in the next few weeks but is secret at the moment but me being me I probed a little, but I can't say anything as we are not allowed to name names on here.

All the best

Roy

Hi not sure if your not saying anything is about the abi trial ? I believe data is out in a couple of weeks ,my OH is on the abi/ Enzo arm so hopefully good news
Debby

https://www.theguardian.com/society/2017/jun/03/prostate-cancer-therapy-study-abiraterone

I have put a separate post on here in case people don't read this thread

All the best

Roy

I am heading that way ,
Got app with Onco on the 8th June at the RM I will be asking about this.

Why are you not getting the choice of Abi or Enzo Roy? From your bio I see you haven't had either of them before so I'd of thought there shouldn't be a problem for you having one or the other. That's unless your Onco is hanging on to them to give you after the chemo.

Roy, the stuff about NICE not approving Abiraterone is garbage. A deal was done where the treatment was free after a certain number of treatments, as indeed it was to me for several months. On that basis, NICE approved the use of it. Of course, the local NHS trust may still resist its use for those few months on cost grounds, but NICE can't be blamed on this one

AC

Trevor was prescribed Abbi almost 2years ago and yes as Lynn says he was hormone resistant at the time but chemo has not been an option for us due to the heart issues .

I would pursue this if I was you .

BFN

Julie X

Hope it goes well for you Roy.

Are you having it at city hospital

Hope it's gone ok Roy.... keep fighting mate

Bri

Hi Roy when my OH had chemo approx 3/4 days after he would get horrendous pains in thighs and also in old injurys such as ribs ,ankle and even in his ear where years earlier when he'd been welding a piece of moulten metal went in ,he delt with it by taking co-codomel .It would be mainly at night when it was bed time and last approx 2/3 days .this gradually eased after the 3 cycle of chemo .hope this helps
Debby

Thanks

Roy

I can't comment on the pain level re the chemo but no one should experience pain that is not well controlled so my advice would be contact your GP asap , also your oncology nurse please don't assume it is part and parcel of any treatment . Phone the chemo dept and explain what is happening.

BFN

Julie X

The cabazataxel I am on at the moment I had small increases in PSA on both my first and second cycle then a good drop on the third

Hope you get the same results

Si

Wishing you the best Roy as ever. Hope things come good for you

I just wanted to wish you Good Luck and hope everything goes well with the chemo. Try not to worry, I know it's hard not to but hopefully the PSA will start to fall.

Steve

Roy

Keep the fighting going. Hope the pain goes down and the gain goes up.

Ray

Best wishes ,keep going ,
Debby

Hang in there Roy.
All the best

Hi Roy,
I always follow your postings and I must say you have worked very hard to tame this beast,
I hope that there is some follow up treatment plan after chemo for you,

I am now on early Chemo for recurrent Pca, six sessions which should improve OS by on Average lets say a year
HT should work better for longer [fingers crossed]
I also suffer bone pain but I have now had second session and it was not as bad this time as the first time
I self inject starting on day four after chemo for five days
I was doing it wrong for the first few days not fully completing the injection so that could have been the cause of the bone pain,
also suffer from extreme tiredness in the first week ,sore mouth and lack of taste , sleep problems as well

Good luck Roy I know it is not easy

Barry

Hi Roy,
I wonder if your rise in Psa was because of the Chemo
Please see link

https://www.researchgate.net/publication/272358110_Exponential_Rise_in_Prostate-Specific_Antigen_PSA_during_Anti-Androgen_Withdrawal_Predicts_PSA_Flare_after_Docetaxel_Chemotherapy_in_Patients_with_Castration-Resistant_Prostate_Cancer

Regards Barry

Edited by member 27 Oct 2017 at 18:57  | Reason: Not specified

Have a fab XMas

BFN

Julie X

I hope you find a treatment that works for you.

Sorry that you have suffered severe side effects of Chemo without the hoped for improvement. I would agree with AC this needs to be discussed with your oncologist. You could also seek a further opinion from the Marsden who perhaps have a wider experience through running many trials.

AC

Hi guys

thanks for the support. 

AC yes you are right I need to tackle the testosterone and Degralex should get me to castrate in less than 3 days which after past experience is not appealing with the side effects and the possible mutation of the PCA, whereas Bicalutamide has caused me little problems apart from the obligratory man boobs. The Onco took me of Bicalutamide saying it was no longer effective which I don't understand as my PSA was still on the decline although declining at a slower rate.

Hi Chris

its difficult to know what path to take knowing that every intervention seems to cause the cells to mutate to find a way to survive. I have always questioned the way NICE lay out the steps we are to take based on cost effectiveness, leaving other counties to innovate and shoulder the costs.

one thing I don't understand is if Chemo is designed to kill fast replicating cells, why do we continue with hormones suppressing this process,as i believe with other cancers they stop hormones whilst undergoing Chemo.

thanks Lyn for the reality check I was not told that Abi or Enzo work better on CRPCA as my Onco has always said it was an option after chemo. Do you know if it can be used as mono therapy.

thank you all

Roy

Bicalutimide does not result in castration so will not solve your problem.

Keep fighting, Roy! 

Hi I thought I would post an update and show I am still here nearly 7 years since diagnosis with a PSA of over 94.

the time since my Chemo has not been pleasant leaving me with peripheral neuropathy, making walking difficult, but it is improving albeit slowly.

Since my last post I have had two PSA checks, one returned the same as before at 7.9 and the next came down to 7.6 so I chose to stay on the Bicalutamide, but my last check showed a rise at 9.5 so I had to make a decision, stay on the Bicalutamide which seemed to be failing or bite the bullet and accept Degralix, which I had refused uptil now. Having checked my level of testosterone and androgen level I had to concede, as they have remained very high with the T at over 50 so I needed to bring it down, therefore I had the Degralix loading dose last Thursday with the next dose in 4 weeks. So we will see how I goes as according to the Onco I should reach castrate level any day now ( oh happy days).

all the best

Roy

Hi Roy, 

Sorry to hear about this.  It must be awful for you. 

I broke a rib a few years ago and that was bad enough then but it was nothing compared to what you're going through.

I hope everything is sorted for you soon. You don't deserve this. 

Steve