Hello Everyone! First of all, hope you all have had a great Christmas and New Year.
Just a bit of background info on my dad who was diagnosed in Feb last year;
T3b, N1 (left external iliac, bilateral common iliac, para aortic and bilateral hilar lymph nodes) M1b
L5 metastases, Gleason 4+4 adenocarcinoma of prostate
Presenting PSA: 97
He was initially placed on zoladex injections and was also placed on Enzalutamide around July 2019. His PSA has dropped to 1.3 currently. He has had two scans since and which he has been informed indicate no visible progression.
I can't help feeling as though I've been a little inactive of late and have hit a bit of a dead end. I received a bit of advice on here which has been extremely helpful and for that, my Dad and I are eternally grateful. I was just wondering what advice can be given going forward? It feels as though my fathers oncologist has to be pushed at times so I want to ensure I ask the right questions and is there anything we should be asking for or looking into at all? We're from the UK and looking forward, I was wondering if looking into LU-177 or AC-225 is worth a shot? If so, is anyone aware of where this can be done as cheap as possible? I'm under the illusion, India seems to be the place to go?
Also any further advice on what you think I should be pushing for from his oncologist wouldn't go amiss either (like should I be pushing for DEXA scans or ALK tests etc etc?)
Thanks in advance!
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Hillwalker87
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Time has not come for LU-177or AC225. These are treatments which are needed in much later stages. He is responding fairly well to current treatment (PSA 1.3 with intact prostate)DEXA scan ...Its a must to know his T score and Z score before subjecting Dad to heavy duty bone infusions. If his DEXA scan and FRAX score are in normal range..no need for bone infusions yet.
If he had Bone mets... I can't believe a doctor will not monitor his Alkaline Phosphatase or even better ,Bone specific Alkaline Phosphatase. If even basic parameters are not being monitored every 2 to 3 months, then, sorry, UK medical system seems lousy to say the least.
Dexa scan is a type of X Ray which measures Bone Density. It takes about 7 minutes to do it. In USA ,it costs approx 60 to 70 dollars. The results are given in T Score and Z score numbers.These numbers are based on comparing his bone density with the bone density of a 30 year old person. If his T Score comes above - 2.5 or lower ...then, he is diagnosed as having Osteoporosis and require bone building medicines such as Alendronate tablets or Bisphosphonate Infusions. The fracture risk depends partly on Bone Density. There is a scale called FRAX (fracture risk assessment) . In this, His T score is put in along with things like personal or family history of Fractures, Use of steroid drugs etc. A composite number puts his fracture risk on a graph in green, yellow or Red areas.
The danger of untreated RED area reading on FRAX scale is that he can have what is called Spinal cord compression which rarely can lead to lower half body paralysis.
Bone strengthening foods and supplements like Turmeric, Yogurt, Vitamin D3+K2 and Regular resistance exercises are needed to keep bones strong.
Besides your love and support as a son/daughter ..he also needs meticulous ,careful monitoring of his biomarkers and imaging scans to remain on top of things. Best wishes to you and Dad.
Many many thanks for taking the time to compose such a well informed response, that's much appreciated! So in your opinion, how often should he be having his PSA tested and scans taken? Also, what scans are the most clear, particularly in relation to his bone mets? I think a PSMA is probably out of the question here but was wondering on the general consensus for the next best thing. The scans he has had since are ones where he's only in for about 20 mins.....
PSMA Ga68 PET CT is the greatest scan for prostate cancer.
Among conventional scans, MRI with and without contrast is the best because it shows both bone mets and organ mets with good sensitivity and specificity.
For bone mets, You can do T99 Bone scan...which shows bone mets BUT can also show scarring, inflammation or healed areas.. thus not giving a very accurate picture.
PSA monitoring is personal choice...I do it every 2 to 3 weeks and chart a graph.
I think, in most people once a month PSA and ALP can be a good quality monitoring.
Yes I do. I monitor over a dozen biomarkers every month. The reason is that I am using a dozen plus dietary supplements and only taking a mild anti androgen med at present. This type of little risky treatment necessitates very close monitoring to catch any changes early on. Once a month should suffice in Dad's case.
The top two are (1) PSA and (2) ALP. Besides we need to watch serum calcium, Hemoglobin, Lactate dehydrogenase, C Reactive protein, Neutrophil Lymphocyte ratio, Platelet Lymphocyte ratio, Lymphocyte Monocyte ratio...and every 3 to 4 months Chromogranin A and Neuron Specific Enolase and Bone specific ALP, urinary collagen telopeptide (NTX)Now, this type of monitoring is like "VIP monitoring" If President Biden has PCa, this is how they will monitor his disease.
In USA, you have 3 online private lab companies which I use (1) Ulta Labs (2) Direct labs and (3) Walk In labs.
Thanks for the specific reply! I was aware of a few, will investigate the others-am also off on a bit of my own tangent and regular monitoring is a part of it.
I am fortunate to be living in United States where you can pay out of pocket and get any lab tests done any time. I cut down on eating out expensive dinners, cut unnecessary spending and divert that saving to more intense assessment and lab testing. Its all about our priorities and health should be our top priority.
My Insurance from my employer only allows labs once in 3 months and PSA once in 6 months.
Hi. I am also in UK and wife of man in a pretty similar situation I think. Still hormone sensitive, but a few mets in the mediastinal area. The SOC in the UK for him (and maybe your man too) would have been chemo back in March 2019 when PSA went up. However, due to Covid no chemo was happening and so NICE released enzalutamide and abiraterone as alternatives in the summer. We were in fact on the point of paying out of pocket for Abi, so pleased to be offered this. However, for some reason NICE said that firstline med in this situation was enza (Xtandi). So, this he had, but had ultra bad fatigue and cognitive fuzziness; this did not improve with reduced dose, so he was allowed to switch to abi + 5mg steriod and of course still on 6 monthly decapeptyl injections. They only allowed the switch within a very small window (about 6 weeks I think) though. Anyhow, this seems to be holding things stable for now, and although still very tired its not as bad on enza for him. But your man is doing well on Xtandi - everyone is different. Ordinarily, You can have abi then enza, but not the other way round. So you would be looking at something else down the line. But hey, things are good for you right now. I know how you feel about looking forward, being prepared etc. and while I agree with TA, that its not necessarily the best thing to do, its awful hard not to! So I know where you are coming from. Chemo I think is still on option on the NHS SOC down the line, if he is well enough, but with the current crisis and raging new variant in Covid, I am not sure what they are doing chemo wise. Although - once we get the vaccine that will help. How old is he? My husband is 73 and we estimate that according to Boris's timetable he should get the jab by the end of Feb, though not got that much faith in this government getting this roll out right! I think the NHS does a lot less monitoring and testing generally than health systems in the US - but hopefully the essentials are covered. As our oncologist says, there is only any point in doing scans etc. if it would impact the treatment decision making in some way. So for now, I am sure they are monitoring his bloods well in addition to PSA - because this is essential for enza - due to potential toxic side effects. If you don't have one already, you could ask to be referred to a Specialist Nurse - who will be able to answer your questions and give and explain the results. They are really good in my experience. Also Prostate Cancer UK have a helpline for any and all questions and they are superb and very knowledgeable . You can have as long as you need with them on the phone. Obviously, they cant give individual tx. advice, but they can talk you through the minefield of what tests there are and what they mean, what treatments are available, when etc. No doubt your onco. will do more imaging if his PSA starts to rise or other symptoms suggest progression. You might even be able to get a PSMA scan in the near to middle future if there are concerns but it very much depends on your hospital. Where is he being treated? You can pay, but its costly so you would want to wait until really likely to be helpful.
We did get a germline test done privately - wanted to know BRCA status (negative). I sent to US for this, (uses saliva) though you can probably get it done in the UK. But we will wait for any other off -SOC tests etc. until things progress. PSA currently around 1.
I asked for a DEXA early on - but it didnt happen. Again, the onco was - what would it change? But I dont really agree with that - I think a baseline DEXA cant hurt. Though you might not really fancy an 'optional' trip to hospital in the present pandemic.
Good luck and do use the PCUK nurses - they are brilliant, and Prostate Cancer UK is an excellent charity to support - they did a lot of lobbying of NICE to get enza and abi released for example. Best wishes. Happier New Year.
That's a great response and sounds like we're very much in a similar scenario. Very happy to hear your other half is hopding up well. Well, my old man has been suffering with the fatigue and has mention pain on the other side of his lower back but he always downplays these things when discussing with the oncologist so I have asked him to give them his permission to liaise with them myself as I have a number of questions I would like to ask them. I personally think he should have mentioned the fatigue and tried for the abi as I've read that the fatigue element isn't as bad? He is 68 and we live in Burnley. He said he isn't too happy with his oncologist as she seemed dismissive of anything he mentioned at the offset. Both my parents said she seemed a little overly keen on giving him his expiration date which didn't fill them with much confidence either haha
I found this quite useful. It gives an overview of 'novel ' treatments which you may see down the line. Its a fast changing area though so hopefully there will be more available when you need to move on. There are even more experimental offers out there and most are discussed somewhere on this site. But getting access in UK is less likely as there are far fewer clinical trials available. The ones in this paper are the more researched ones I think. Treatments for advanced disease are getting quite personalised now - which is good. Different patients and different forms of Pca are in different categories and so treatments good for some are not appropriate for others. If you are unhappy with onco you can ask for second opinion even in the NHS! Best wishes.
Aaaaaaah that's much appreciated, thanks for all your help and advice! He was trying to get in touch with his oncology department yesterday as he's currently got lower back pain but they didn't even pick up the phone! 🤷♂️
Great news that enzalutamide is working so well. For now, there is nothing much to do but enjoy that. There is a clinical trial of combining it with docetaxel, but we don't yet know for sure that there is a benefit to combining them.
It is always a good idea to get a germline genomics test. You may want to wait on a somatic genomic test until after there is progression.
If you want to give it a shot, Lu-177-PSMA in India is possible. But there is no data on how effective it is in men who are still hormone sensitive.
A baseline DEXA scan can't hurt. If there is osteoporosis, he may want to strengthen his bones. Bone ALP is something you would track along with PSA.
Great advice Allen thanks! Yes, we're certainly in no rush to do the lu-177 as of yet, I was looking at more what to do in the event of progression. What would be your next best bet when if scans and PSA indicate progression? He hasn't had chemo yet so I was thinking perhaps a course of chemo with a different hormone treatment (perhaps abi?)
By the time there is progression (and I hope it will be a long way off), there will be many more available therapies, and we will know more about optimal sequencing and combinations. In the UK, NICE has a lot to say about what you can use. You gain nothing by "preparing yourself." Once he has entered the mCRPC category, there is a whole slate of different medicines available.
I’m in the UK. When your dad gets a psa blood test, it also picks up as standard his Hb, WPC, Plts, Neuts, Alts, Alps and Biliruben scores. These measure iron count if he is run down and needs a supplement, if his body is fighting infection, cancer activity in the bone etc. You should be able to get the scores retrospectively and explained from a patient support nurse. I find it useful to lay these out on a spreadsheet to monitor progress.
Sorry Tony, just another question regarding the PSA testing etc. His oncologist has never really mentioned any of the aforementioned. Is it something they usually discuss with the patient or is it simply a case of 'they see nothing to be concerned about so no need to mention them?' also, how often do you have your scans and PSA tests? Thanks
Oncologists are human; they sometimes are journeymen who follow standard protocol, who have lots of patients to get through and can make mistakes, or at least don’t consider all the options. I made it my business to learn the nomenclature, which is like learning a foreign language; not helped by the fact the drugs are different names in different countries. Follow this site and you will soak up the info. It’s more like a mist clearing than a lightbulb going on.
I’m sure his results are within parameters, but get them and follow trends. If he’s on enzalutamide, NICE do not allow trying abiraterone afterwards although it sometimes helps. I’m on the latter but both effective.
I get a 12 weekly shot of hormone therapy (triptolin) and usually a blood test just prior would suffice. With my history and extensive bone mets, having had chemo (docetaxel) I get one every four weeks. He may be on a monthly firmagon shot like me when I presented; they can leave your tummy sore and best physiologically to transfer to 3/6 monthly shots.
Rest assured he has years to go, but best to be on top of things and not to let the oncologist become complacent.
There are serious, knowledgeable experts on this page who know a lot more than me; listen to them. It sounds to me your dad might be oligometastasic. A cure maybe unrealistic, but do some homework in that department about a r/p and tackling the metastasis outside the prostate.
That's a great, concise response Tony, many thanks for that. I do find this forum extremely helpful and managed to push the oncologist into prescribing him xtandi based off info provided on here. It's trying to work out successful monitoring now but I'll try my best to educate myself
Sorry Tony, so you mention NICE do not allow abi after Enzalutamide. What about the other way round? We did go for abi but was prescribed xtandi instead
Aaaaah OK, that's good to know. Regarding the R/P, is this something the NHS would offer with mets? I was under the illusion they wouldn't go near it if so?
If incurable and inoperable, r/p not usually practicable once spread to lymph nodes and throughout skeleton, as in my case. Some people think it’s like shutting the door after the horse has bolted; others good to get rid of the mother lode. Also, quality of life issues such as possible colostomy bag, etc. In some cases, as I understand it, where cancer has spread to only two or three spots, that can be treated with radiotherapy or operated on, it might be a treatment option, although it might not be SOP here. USA tend to have more radical, aggressive options. If feasible, either lobby hard or pay?
Yeah I hear what you're saying, food for thought though, definitely. As far as I'm aware he has mets on lower vertebrae but never had a PSMA scan to detect micro mets or anything.
Guess it is in US only. It works like Lupron in pill form take daily.
My Med Onc is varying PSA test and comprehensive blood test frequency, Monthly when higher PSA, now every 3 months with PSA <0.1. I'm taking Eligard with Xtandi (Lupron w/Enzalutamide equivalents), which has reduced lymph node swellings and PSA, and rib lesion..
I had MRI with Auxmin last March 2020. It detected lymph node activity and "possible" bone mets . Have not tested since.
My understanding is that in California doctors' prescription is required for tests and scans as well as treatments, other than supplements.
NO. Orgovyx (Rolugolix) Does NOT work like Lu177...you have wrong information. This works just like Firmagon (Degarelix) It suppresses aAndrogens like any of the meds like Lupron, Eligard etc. There is nothing special about Orgovyx other than that it comes in tablet form.
I have been inactive for a while now. A lupron/eligard shot every 6 months. Xgeva changed to once every 3 months (because of length of use). Psa and blood work now once every 3 months. Xtandi and some other medications picked up at pharmacy. That's great! I hate being around sick people. If I read you right, the Xtandi is still working? My psa went down very slowly until now I'm <0.1 I used to go to the hospital 4 times a week. I am enjoying this vacation/reprieve as much as I can. (Chemo and lupron, then lupron plus xtandi for almost 3 and a half years now. Extensive bone mets (stable), abdominal lymph node (undetectable). If Xtandi is still working for Dad? Enjoy! Go have some fish and chips. Or, if you are like us, have it delivered, if it hasn't gone out of business.
To be blunt, what you do to the English language is criminal in 49 states and most of New York. But since you live in NYC it's overlooked. Hizoner is de bestizest.
I'll opt for the 20 to life in the Bedford Hills Correctional Facility for Women.....If you visit..... I'll let you view the pictures......................Bring up a carton of bibs for my constant drooling.....
Happy that he is doing so well on enzalutamide. Ride it for as long as it works. In the meantime try to get a bone strengthening agent such as Prolia (my choice) or Zometa or oral alendronate. Dexa scan may be required to authorize this for osteopenia from his ADT. Ask for and go for Provenge treatments if this is a available for mHSPC over there. Can’t get it in the US until CR unfortunately. Best wishes.
Thanks mateo! Yes he had already broached the zometa but like you say, he was told he wouldn't have this unless he is in pain which as it happens, his lower back has started so I think he plans to mention this at his next appointment. I think he probably needs a DEXA personally
I agree with most of the above. Except the use of LU177 which is available in the UK now via GenesisCare, in WIndsor I believe. Early use is likely to be a more use than late treatment with Lu177, following a PSMA PET scan to show avidity and likelihood of its efficacy. It costs lots unfortunately. I have had 6 sessions in Aust and NZ since 2017., see my profile.
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A general Thank You to this group
Update on my Dad: 4 months since last PSA and Provenge
New to site- need advice 
Progressed to bones...advice welcome!
