Hello all, this is my first ever post and I'd really appreciate some thoughts and advice.
My Dad, 65, has recently been diagnosed with prostate cancer that has spread to his spine. At that point PSA was 26. He was started on Degarelix a few days after diagnosis, and today, about 2 weeks later, he had a first meeting with his oncologist.
The oncologist has suggested that Dad gets straight onto chemo (Docetaxel) alongside the Degarelix - I know some studies have suggested this is a good thing, but I do have some concerns and just wanted to hear people's thoughts.
They haven't given Dad a Gleason score as apparently there isn't any point in doing a prostate biopsy as in the oncologists words 'we know what it is'. Is that true? Are there times when it doesn't really matter what the Gleason score is? Is it a bad sign that it is not deemed important?
Also I asked my Dad to raise the possibility of early use of abiraterone/zytiga as we have all seen the recent groundbreaking results from the STAMPEDE trial about the benefits. Apparently the oncologist said that NICE had not granted a licence for abiraterone yet and so this wasn't possible. Is this correct? I thought that abiraterone was available but that this was just a new approach in how early it was introduced. I'm worried my Dad is gonna miss out on what sounds like a bit of a gamechanger in terms of prostate cancer treatment.
Finally my Dad also had a pelvic MRI at the end of last week which said that there was no evidence of any lymph or bone mets in his pelvis (surely a good thing). My Dad had to show this report to the oncologist who apparently had no knowledge the scan even occurred but even after reading it said 'well, it's neither good news or bad news'. Is that right? Im sure it doesn't change the fact that this is a serious situation, but surely it gives a certain amount of positivity.
Just concerned that perhaps this Oncologist isn't the best fit and would be curious to hear the thoughts of others on this and the treatments mentioned above.
Thanks, J
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With spinal "mets", you might also ask about the latest recommendations in your Dad's health care system for getting a bone-related agent, such as Xgeva (denosumab) or Zometa (zoledronic acid).
Charles
Your doctor is right about no need to biopsy the prostate one the cancer has spread. It's not important to have a Gleason score at this point because it does not change the treatment plan. He will be going to Primary ADT (androgen deprivation therapy) with the option of early Docetaxel. That's pretty much the standard of care right now. Early Zytiga is also an option, but still working it's way through the approval process as Charles has indicated.
My doctor did order a biopsy of one of my bone lesions to make sure the cancer was not the neuroendocrine (small cell) variety. This kind of prostate cancer is rare and only around 3%. But if your dad has that, traditional ADT treatments such as Lupron, Zoledex, Degarelix (Firmagon), etc. as well as second-line drugs such as Zytiga and Xtandi will not work. You have to go on a specific chemo regimen if you have that form of prostate cancer. I guess the logic for that was not wasting time with ADT if it wasn't going to work. So I wasted time waiting for the results of the biopsy instead. If I had it to do over, I would have said skip the biopsy and assume it's in the 97%. If it doesn't work, then do the biopsy. But then hindsight is 20/20 they say.
As far as early chemo goes, I'm just finishing it and would recommend it if your dad is able to take it. In my opinion, it's better than early Zytiga because it goes after a broad spectrum of prostate cells, some of which may not be androgen sensitive and wouldn't respond to ADT treatments. The harder you hit it in the beginning, the longer it takes to come back. Most people tolerate the side effects of Docetaxel well.
I've had excellent results with it so far. My PSA went from 463 at diagnosis to .2 in 5 months.
Good luck with treatment and keep us posted. We're here to help and support our brothers in this fight.
Hormone therapy plus Zytiga is the new best practice based upon what I read in the Latitude study. It's on the prostate cancer foundation website:
I followed the results of the Stampede study and went straight to Lupron plus chemo when I was diagnosed.
My understanding is that the Latitude study shows starting within Zytiga is as effective as chemo, but much easier to tolerate. Had that study been out 2 years ago, that's what I would have done.
As for having a Gleason score, my understanding is that while it may not be useful at this point to diagnose the disease, it does give insight into how aggressive the cancer might be. That's why I had the biopsy.
Regarding the comment about 'neither bad news or good news', my hope is that this was a misunderstanding. Less cancer is always better than more I should think. But I assume that if we give the doctor the benefit of the doubt, perhaps he just meant that the immediate treatment would be the same.
If it were me, based on what I have learned these last few years, I would get a second opinion at a leading cancer center that is embracing the findings from the Latitude study. I'd see where by rereading the study. And I'd do this now before finalizing the commitment to chemo vs. Zytiga.
And I'd ask others in this forum who are much more informed than me their advice. Daryll, for instance, is the person on this forum that circulate the Latitude study.
The comment about it being "neither bad news or good news" is off, I agree.
Having mets to the pelvis and lymph nodes is definitely worse. When it comes to cancer, less is better.
Just want to make another argument for early chemo vs. early Zytiga. I asked myself this question "Would I ever do chemo. Would I do chemo if it was the only thing left to try?" My answer was yes. So then I considered how beneficial is doing it now vs. later. Turns out, chemo is not very beneficial when used as it has been traditionally: after primary and secondary ADT. It adds around 3 months on average if done later. Another thing I was thinking about was not just how tolerable is it now, but how tolerable will it be later? I'd rather take the less tolerable treatment when I am younger and the disease has not progressed as much. I also believe Zytiga adds more survival time than chemo when done late. And you can go back and be retreated with chemo again with potentially good results if you can tolerate it. Not sure if that works with Zytiga.
My doctor feels that early chemo is best followed by Xtandi instead of Zytiga done later after castrate resistance. I'm going with that. Just my opinion and I'm not a doctor so check with his doctor.
I just posted today. Like what you went through and happy on your excellent recovery. As I am feeling fine which is not what the medical reports indicated I there will self treat for now, Hope to catch up sometime.
So sorry for you and your father being here. But it is a great place for information and support.
I am sorry that the UK has not yet approved the use of Lupron with Zytiga and prednisone, since the trials were in the U.K. However the treatment plan that your father is on is still a good one.
Glad to hear the MRI of the pelvic area was negative. You may want a full body CT scan along with a bone scan to make sure there are no mets anywhere else besides the spine. Hopefully they will be negative, in which case the scans will act as a time = zero for future readings. This could be of great help down the road. Also note, the main problem with scans is that they can not detect very small mets. I do not know if it has been approved for use in UK, but there is a new PET scan that can detect these mets. In the US it is usually restricted to men that had reoccurrence. However, in some cases you may be able to get it sooner. A review of PET scans is listed below.
A biopsy may still be of value. They could determine if it is a rare form (like intraductal, ductal (not the same) or small cell. These forms do not respond the same way to "standard" treatment, are harder to detect and treat. (I have ductal. It was for that reason I was able to get the PET scan talked about above.)
Finally, please know your family is not alone. You have people all over the world pulling for you!
The role of prednisone is to minimize the side effects of Zytiga. It does nothing to treat cancer. She put me on 5 mg of prednisone to minimize the side effects of prednisone. For me they are high blood pressure, issues with the stomach and very, very vivid dreams. I get blood work done every month. As long as it comes out OK I will stay at 5 mg.
The reason I take it in the morning is to minimize its effect on my dreams. They are not bad dreams, just intense.
Welcome to the group, I am wondering how they would know it was cancer without a biopsy, I have never heard of that. Genetic testing and targeted medicine is big now, and I suspect will be bigger in the future, I think with a specimin from the biopsy they could do genetic testing as well as tell a lot just from the path report on the biopsy which is all useful information. It is interesting that they MRI showed the pelvic region to be clear, the pelvic region being the first place it would usually spread to, and yet they see something on the spine which without a biopsy on the spine can not be definitively called prostate cancer ,just my thoughts, I like the second opinion at a major Cancer center idea. I wish you both the best.
Good point Dan. I am also surprised that they didn't do any kind of biopsy. I don't think that is typical. In my case, it was pretty obvious with a PSA of 463 and a bone scan that had more bright lights than a christmas tree. But even then, they still did one.
If I were your dad, I would want to get my PSA retested right away. If it is in indeed hormone sensitive prostate cancer, the PSA should be dropping fairly quickly. I would also be looking at the Alkaline Phosphatase level (that's a blood test). If that was high to begin with which it usually is with bone mets, it should be dropping if the bone mets are healing. Mine started at over 600 and has been steadily dropping since starting ADT and chemo. It's now 64.
Thank you all so much for taking the time to respond to me, I must admit that I'm quite overwhelmed by your support- it's very kind of you all.
I shouldn't really be second guessing the doctor - after all I suppose he knows a little more than me
My worry is however is that Dad will miss the boat on the early zytiga treatment. Is it known when it will stop being 'early' to start taking this? Will it cease to be as effective once chemo has started or might it still have the same benefit before the cancer is castrate resistant (I appreciate this may be an unknown given how recent the reports on this have been published). Also is there any idea on how long it will take from now to get through the NICE process?
We are lucky in that we literally live round the corner from the Royal Marsden so Dad is already being recommended for the STAMPEDE trial. Here's hoping he is one of the lucky ones that gets something to help him
I would not call it second guessing the doctors. Rather it is a discussion. But it would be very helpful to have information and data on hand, That is where this and others groups can come in handy.
It is a shame that the U.K. Has not approved the Lupron/Zytiga therapy yet. In the meantime perhaps the below will be of help
Different people have discussed the need for biopsy, even at this stage. As someone that has Ductal (~0.4%), you do not want to rely on the odds. The need for full body scans if for no other reason than to act as controls is critical. It can be hard to tell the difference between arthritis and bone mets for example. Bloodwork is critical, especially Phosphatase to see how the bone mets are working.
Most important, please never feel pushed into a course of action. That includes any suggestions you get here. We are all on your side. We may make recommendations but they are just that.
Second guess the doctor -- not aggressively or just for the heck of it. But if it doesn't feel right, there's probably something not to feel right about. See my longer post in reply to you.
Again - not sure what is "allowed" in UK -- but I think you/he needs to get a better sense of where his disease is -- and how it's responding to first-line treatments -- testosterone reduction. I've heard of amazing results, even at Stage IV, with great disease response to just the hormone deprivation therapy.
Everyone is different, but it seems too early for Zytiga maybe? FYI - this was my husband's course:
- Casodex + Lupron, worked for a while (8 months?) + Xgeva to compensate for the bone issues
- about 6 months in, started chemo with Taxotere (CHAARTED protocol)
- castration resistant developed -- no more Casodex, started on enzalutamide
- Provenge immunotherapy (about 18 months in)
- Xofigo (shortly thereafter)
- spot radiation on a painful spine met (2+ years in)
- another spot radiation on a painful spine met (3+ years in)
- still on enzalutamide, almost two years, but it is starting to "fail" with PSA creeping up, so abiraterone/Zytiga next on the list
I believe that in the US, insurance will not approve of ADT until the cancer is proven castration-resistant (PSA goes up even with low testosterone).
I am with gregg57 who has given an excellent reply. I am also a strong advocate for early chemo with ADT mainly because of the important point gregg has highlighted that chemo drugs being cytotoxic can kill even the Pca cells which are not sensitive to androgen ( hormone refractive ). Zytiga is also a second line hormonal agent and it has no ability to kill hormone refractive cancer cells. However both combinations have now proved to be effective in early use for longer survival benefits according to the recently concluded trials : STAMPEDE, CHAARTED and LATITUDE.
Hope you will settle down to the best treatment strategy that will add many many years to your Dad's life.
Thanks. I think a really important thing to consider is the fact that taking Zytiga early vs. late doesn't give you much if any additional life expectancy. You are just on the drug for a longer period of time. This adds extra cost for you and side effects.
Keep in mind, the studies compared early Zytiga to ADT, not early Zytiga to late Zytiga. If Zytiga is done after castrate resistance occurs, you will typically get around 12 months out of it. They are saying 13 extra months if done early. To me that's not significant. With chemo it's much different between doing it early vs doing it later. In that case you get 3 months more if done later vs. 13 months if done early. All 3 doctor's opinions I've gotten said not to start on Zytiga now, use it later or one says go to Xtandi later.
Dad's oncologist just suggested zytiga today, but he is 76, has heart conditions (had ICD implanted 10 years ago) and has Type II diabetes. Stage 4 with mets. Started Lupron January 29, first blood work March 9th- PSA went from 334 to 14. Dr not sure if Medicare will cover Zytiga (he doesn't have 10k a month to pay for 30 pills). She says chemo will make him too sick. This is so tough to know what to do next.
It sounds like ADT is working. I'm wondering why you feel you need to do something else. If ADT is no longer working and he is progressing, then I believe Medicare would cover Zytiga. There's probably still a co-pay but I'm not yet familiar with the different coverages with Medicare. Even though Zytiga is approved for early use, I'm not sure Medicare is covering it.
Yeah, it's not me that feels something else needs to be done. She was talking to us about the early use of abiraterone combined with Lupron, but cited that the studies were mainly for men in their early 60's. We see his urologist next month and will discuss this with him as well, and see where we go from there. I'm with you, that if it's working, just leave it. But she's the oncologist. I'm reading everyone's thoughts and suggestions and woah, this is alot! I'm just happy to see my dad in less pain than he was back on Christmas when I saw him bedridden for days. He's back to his old chipper self and has a positive outlook.
I did the early chemo combined with Lupron and Casodex. I still have Zytiga in my back pocket for future use.I'm also stage four, (was when diagnosed, mets in bones, psa 850, etc, etc.) I had two of the best prostate cancer doctors in the world both tell me the same thing and that was go for the the early chemo. Now I don't have a higher education, I depend on my big shot lawyer daughter to explain many medical terms and meanings to me. But I do have a PhD in warfare and I know this, when prostate cancer reaches stage four a man is in a war, not a skirmish. That being the case you want to kill the enemy,not wound it. Chemo kills cancer cells. I consider chemo a charismatic sociopath, meaning they also kill good cells, ( collateral damage). I accepted that. Do not allow the enemy to gain anymore ground, attack and kill without remorse. Chemo does just that. Zytiga takes prisoners, no prisoners! Be ruthless and kill everything that gets in the way. When I started out they quit counting my enlarged lymph nodes I had so many. Now nearly three years later all my nodes are normal size and my psa is undetectable. Let me be clear, this is just what I experienced, I'm about the furthest thing from a medical professional as a human can get. However I did learn one thing many years ago and that was kill or be be killed. Good luck.
Wow nameless ! What a composition words and meaningful expressions. I took a printout of your text to show my MO who is very friendly with me, on my next visit. My thinking too is exactly the same as yours in hitting the aggressive PCa as hard as possible taking the earliest possible opportunity.
Thank you very much for your brave and inspirational motivation. I do want to keep in touch with you so long as I fight this battle.
You and me are going to fight this battle until they come up with something that turns our cowardly cancer cells into a chronic, non life threatening condition. Then we are going to sit in the lobby at the Cinnamon Grand Hotel and have a good laugh.
Seconding the early chemo. This has quickly become standard of care for advanced stage IV PCa.
My husband and I opted for very quickly after his diagnosis and a consult with Dr. Eric Small, UCSF, and leading Prostate specialist. The CHAARTED study had just been preliminarily published, and we went for it. It's kind of frustrating because there are no direct results necessarily, and we were upset because he still went castration resistant pretty quickly thereafter. And same with Provenge (immunotherapy) and Xofigo (RA223). BUT -- after running through these treatments fairly rapidly -- his overall disease really stabilized on enzalutamide (Xtandi). He's been almost two years on this drug with a lot of stability in the disease. Just recently PSA creeping up. Our theory is that it all built up and worked together to create a good effect.
I agree with Nakalrats, it sounds like you need a oncologist who is knowledgable about Prostate Cancer. In the US, chemotherapy (docetaxel) along with abiraterone or enzalutimide is the preferable 1st course of action. This is very different from five years ago when I was first diagnosed. I have been thru lupron, casodex, denosumab, galeterone, enzalutimide, Provenge, AZD-8186, abiraterone, radiation and now docetaxel. I found lupron, denosumab, enzalutimide, radiation and docetaxel to be most effective for me.
I am on the Stampede trial, Abiraterone + Predisolone + Zoladex. There are around 1900 of us and it has been extremely successful for me.
Initially, I wasn't offered a biopsy either, as "the horse had already bolted".
When I was asked to join the Stampede trial 6 years ago, they then needed a genetic sample of my Prostate, but only took three cores.
Abiraterone is £2850 a month in the U.K., so NICE are reluctant to offer it as first line treatment, however it comes out of patent in 2 years time so that will change the playing field.
During the Stampede trial, our NHS only paid for the drug for the first 10 months, after that, it has been fully funded by the manufacturer.
It is a real game changer in PCa treatment, I hope it will soon be available to all. Being chosen for this particular arm of the Stampede trial was randomly chosen by a computer, so a bit of a lottery. I bought a ticket and won first prize.
Hi Tommy, thanks for your message - really pleased to hear that you have been one of the lucky ones and hope that your good health and fortune long continues.
Interesting about the cost of Xytiga - I shouldn't be surprised that's the reason why it's not standard early treatment.
Do you any chance know what designates the 'early' definition? Is it before the cancer becomes castrate resistant? I suppose I'm asking to see whether my Dad is still likely to get the 'early benefit' if he gets it in 2 years when the patent runs out?
'Early' is at diagnosis. The PCa hasn't had chance to become CRPC as you haven't had any drugs like Zoladex which chemically castrate you. Eventually the PCa becomes castrate resistant, I.e. The Zoladex no longer works. Previously, Abiraterone was then given to 'reinstate' the castration, but generally failed after 14 months or so.
Taking it early apparently stops two pathways that cancer uses to grow I believe.
I'm just approaching 6 years, my PSA at dx was just under 600, 7 major bone mets. PSA three months ago was 0.1. I'm remarkably well, but the double hit to my testosterone has caused severe muscle wastage, which combined with my damaged femurs means I'm now disabled. A small price to pay I reckon.
I’ve not had any further bone scans, so I can’t answer your question. I have noticed total reduction in bone pain, however one of the ones in a rib at the Bach occasionally aggravates the muscle in my back, so I guess it’s still there, but not growing.
Anyone like to shed light on what happens to bone Mets that have stopped growing for 6 years? Do the cancer cells die or get replaced by healthy cells, or just lie dormant?
My MO states 10 mg. needed to counter some of the negative side effects of Zytiga. I know long term use of prednisone is not good for the bones. I like the idea of 5 mg. but I don't know if that is enough.
My dad (78 now and living in India ) was on xtandi in March 2017 and he had real adverse permanent life changing side effects. He fell the 2nd day after taking the first doses of xtandi. He had an early onset of severe dementia and hallocations. We persisted by manipulating the dose levels. 4 weeks later his psa was down dramatically, but his cognitive abilities were destroyed. We gave up on xtandi and he has not recovered from the after effects. I would not recommend this medicine to anyone who is over 75. My dad has no sugar, cholestrol or any other kidney problems. The only problem is prostate cancer. Xtandi practically killed his quality of life.
There is not a "definitive" diagnosis without a biopsy. I don't think (as a layperson admittedly) that cancer can be properly staged without a biopsy. It is an uncomfortable but not terrible procedure (OK, 2nd hand, talking about my husband). Age 52, he started with a severe pain in his hip, which turned out to be a hairline fracture bleeding into the joint space, revealed by MRI, with a differential diagnosis (= what could this be?) of multiple myeloma, bone cancer with bone mets, or prostate cancer with bone mets, the last being the most likely. First appointment with urologist, and a DRE, confirmed the 3rd option but then a biopsy to now for sure. Esp. at age 65 (relatively young), they should want to know how the prostate tumor itself looks. The Gleason score is an important baseline. I could be wrong but I haven't heard of anyone being diagnosed with prostate cancer *without* a Gleason score from a biopsy. That is the way you *know* what it is (rather than highly suspect). Maybe not everyone agrees -- but get a second doctor's opinion. How do you know the bone mets is prostate cancer if you don't have a definitive diagnosis that the prostate has cancer? BPH and prostate cancer can feel similar on a DRE (again, even if highly suspecting prostate cx).
My first advice would be -- change oncologists and/or urologists. At least go to a major research center and get a second opinion (which should be covered by most health insurance).
Reading the rest of your post -- get a new oncologist. The med-onc and the urologist should be working very closely together. Clearly they are not. It's *great* that there are no lymph nodes or pelvic mets! These guys seem to be guessing at a lot about your father's disease. Once we had the biopsy results, my husband immediately started Lupron and Xgeva (necessary companion) -- didn't start with Deregelix. His Lupron shot hurts his butt for a day or so, but it's once every 90 days and not at his stomach (sounds painful to me!) I guess some UK options are different.
You are clearly doing a lot of research, which is great. Now you need a specialized oncologist to help you sort it out. This is not necessarily for treatment but for perspective and a big picture. Note -- he also had the same biopsy samples tested for some particular strains of prostate cancer, which would have helped with treatment if positive. Not sure what's available to you in the UK, but there should be some prostate specialists/researchers available for consultation (not ongoing treatment but "check-in" appointments -- we go every 6-12 months now). Guessing that there as here, oncologists treat all cancers. Consulting with a prostate cancer researcher can be really helpful to both the treating oncologist and the patient.
The *best* thing we did at the beginning of my husband's diagnosis was fly to SF (from Hawai`i) and meet with Dr. Small at UCSF. We sent all the scan and Gleason tests ahead, and he came in and explained what was going on, what the options were now, and down the road, and just an overall approach to the whole thing. One message was that you do want to be careful about following an appropriate order of treatment (based on individual case) and not jumping too soon to various treatments so that you can extend the treatments as long as possible (he calls it the "pony express" -- wear out each pony).
The close-second best thing we did was change our oncologist after about 2 months. We had young oncologist who was very upbeat but very by the book, and thought we should be impressed. He also had no control of his staff and sent crap paperwork to the insurance. So much unnecessary stress.
This site is a great resource, esp. to know you and your father and family are not alone, and to get feedback from people. First, though, it seems like you need a better medical team that will give you solid, respectable answers. You might also consult a radiation oncologist to give the scans a good look and give your options from that.
On a more positive side, my husband started out quite bad. He wasn't that sick on the outside but clearly had raging prostate cancer in his prostate, bones (pelvis and spine), and some lymph nodes. In the first 18-24 months, we went through a lot of the available treatments. He went castration-resistant within the year. Other than the chemo side effects (CHAARTED protocol) and some back pain from tumors (treated with spot radiation), he is remarkably healthy -- 3-1/2 years later, with the cancer still there but controlled.
You need a comprehensive and accurate picture for starters. Biopsy, full body bone scan, and other scans (CT/MRI) to check out the bone involvement. Then develop a course of treatment -- short-term and long-term.
I hope you can find a medical team that works *for* you and *with* you. It's a really scary time. I remember practically clutching the folder with all of my husband's initial scans and bloodwork and such as we got on the plane to SF, and I feel like my eyes were bulging out the whole time with anxiety -- until we met with the prostate-oncologist, and then we had so much more information, such a better idea of what we were dealing with. Still not great but it became manageable.
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