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Posted 5/23/2017 8:10 PM (GMT 0)
hi all,

my dad's latest scan has some really bad news - there are now multiple spine mets and also lung and liver involvement. my dad's original g8 PCA mutated into high grade neuroendocrine. chemical recurrence happened in jan 2016 though no scans were done and no treatment was started (due to a negligent uro). spine met was found feb 2017, med onc was hopeful it was an outlier case as it's unusual for NECP to only have a singular met for so long.

anyway, last month scans were fine, he still just had the one met. this month though...mets everywhere...all through the spine, lung and liver too (though not sure how extensive those are yet) i really feel that this may be due to the spinal compression surgery he had in feb 2017 - the met was compressing his spine so emergency surgery had to be carried out. i think this disturbed the met leading to proliferation. i believe that if scans had been done last year and the met tackled while it was still very small, we could have prevented this.


i am still trying to be hopeful. hopefully he will be a candidate for platinum-based chemo and that will help.

anyone have any other suggestions? we are getting in touch with dr kwon with the latest reports.

i am just devastated to be honest. i really was hoping this would be an outlier case, as it wasn't behaving the way a "normal" NEPC does - with only one met even after a whole year and more of no treatment. but i guess that was too much to hope for.

i am just numb. this is what i was dreading. i am scared for my dad and for my mom and my sister too.

please, anything at all that you feel may help, i am open to.
Posted 5/23/2017 9:19 PM (GMT 0)
Hi snowcake,

Much more experienced and insightful people will comment shortly, but I just wanted to write and say don't despair. First of all, I don't think it is possible to spread mets simply by surgery. So, I don't think you should feel like that could have been prevented. My dad's oncologist always says that there is little logic to PCA, those cells can just mutate, and no one can really predict when.

In terms of treatments, I know you've mentioned lupron and radiation. We have read that platinum-based chemo can be effective, but also what about a genetic analysis (such as Guardant 360) to show if certain mutations exist that can be effectively targeted by Olaparib (a few Phase II trials are taking place evaluating this drug: /prostatecancerinfolink.net/2017/05/18/the-phase-iii-profound-trial-of-olaparib-in-mcrpc/

Also, what about starting Zytiga or Xtandi, even if they don't kill off all PCA cells, they could reduce the tumor burden (there are usually a number of different PCA cells in one's body at any given time, not all PCA is going to be neuroendocrine). Trying different therapies could reduce the disease load, and cause an immediate improvement in overall symptoms).

Best,
Arthur
Posted 5/23/2017 9:25 PM (GMT 0)
thank you so much, arthur. this is really what we needed to hear right now. that there is still some hope. it just all happened so quickly and we are reeling. i will ask about zytiga and xtandi. i have asked already about genetic testing (we communicate via fax so waiting for the MO to get back to me)

i hope it works on at least some of these tumours and we can have more time with him. he is such a great, positive and kind person who lights up any room he's in. so much charisma and humour and just everything...he is an amazing dad. he changed his lifestyle completely when the PC was diagnosed - stopped drinking, switched to a healthy (mostly vegan!) diet and cut out all sugar. he really has worked hard to try to keep this thing at bay. and he did for 6 years! if only we had been with a different doctor, he would've gotten scans as soon as his PSA went up in january 2016 and maybe we wouldn't be at this stage. who knows.

i know everyone here is going through a hard journey and i always admire and appreicate the strength, hope and helpfulness i've got from people here. you have all really helped me, and consequently my family, though this whole nightmare. i just want to wake up tomorrow to find this has all been a bad dream or that there is a cure or long-term treatment for this type of cancer.
Posted 5/23/2017 9:28 PM (GMT 0)
as for surgery helping the cancer proliferate...i guess it just feels like it's too much of a conincidence that he had a singular met for over a year with no treatment, but as soon as the met was operated on, the cancer quickly spread 2 months later sad
Posted 5/23/2017 9:36 PM (GMT 0)
Dear snowcake,

The most important thing is that you are providing your dad with incredible support. I'm in a similar situation with my dad, whose cancer spread to bones after years in remission. You definitely cannot look back, just focus on the present.

Cutting of the sugar is also supposed to be a very important step.

One other thing to consider, even though we don't have results from Phase III trials, but a number of other studies: Metforming use can be important as a supplemental therapy to control metabolic syndrome, but a number of oncologists also think that it could have therapeutic role in PCA treatment as well (along with other treatments). There was a study out of Sloan Kettering last year that listed Metformin use as useful tool in the drug arsenal. So, you might want to ask you dad's oncologist about adding Metformin and Statin to his drug regimen as well.

If he can tolerate it, combining chemo with Zytiga or Xtandi should be attempted as well. I now there are trials investigating such combinations going on as well.

I did not include Xofigo above, because I'm not sure if it is used when someone has non-bone mets (but for bones it is really good), so it might be worth asking about Xofigo as well.

Arthur
Posted 5/23/2017 9:47 PM (GMT 0)
thank you so much again, arthur! all this info is so great and i'm going to discuss with the onc. hopefully dr. kwon will accept my dad as a patient and have some ideas too. i just hope my dad will be strong enough to travel there if we do get accepted
Posted 5/23/2017 10:32 PM (GMT 0)
Snowcake
I am sorry that you and and Dad are getting bad news. He sounds like a great guy and that you love him dearly. That is one of the best gifts he could have at this stage of life. I hope that you do not look back and relive all the what "ifs". It will not serve any positive purpose for you or your Dad's treatment plan. Actually, none of those things might have had any positive outcome to where he is today. GS8 is a dog! A PSA of 2 after surgery is one of the highest I have seen the nine years I have been here. Look forward to the times of laughter and memory making that you have with Dad in the days ahead. As you have been discussing with others, there are still a few things that might be appropriate for his continued treatment. Seek out the best plan and do what you can to continue being the great daughter you have been. He is blessed by you!
Posted 5/24/2017 12:24 AM (GMT 0)
Octorobo is on the right track...Never look back, that's history. You can't change it so forget about it...Just look ahead..You seem to be on the right path..Stick with it and play the cards as they are dealt. Worrying about what happened yesterday is a waste of time...Concentrate on what is going to happen tomorrow....Every day you have with your Dad, enjoy it and make the best of it...
Posted 5/24/2017 4:22 AM (GMT 0)
I think your dad is still responding to hormones? If so, maybe you could ask about chemo now, rather than wait until he is castration resistant.

I'm curious to know what they say about Zytiga and Xtandi as it is my understanding that these drugs will only be given to castration-resistant men.

Good luck and please keep us in the loop.
Posted 5/24/2017 8:18 AM (GMT 0)
thank you octorobo, fariwind and annie. it's true, looking back does nothing, we just need to put all our energy into helping my dad and try to get the best treatments available.

annie, i don't think my dad's mutation of the cancer is very responsive to hormones. his PSA was 0.5 when he started them this time around and went to 0 very quickly. but PSA isn't a good measure for this type of cancer, though the onc is keeping him on HT because there was still a decline in PSA.

i am hoping he can start chemo ASAP and will still be a candidate, despite the extensive mets found (entire spine, though they are small aside from one and there is also lung and liver that we know of, another scan is being doen today)

i hope zytiga and xtandi are still options.i brought those up initially but the onc said that he would do platinum-based chemo but maybe he'll consider using those too in conjunction.

i wonder if another HT that isn't lupron would somehow work better for my dad? i'm not sure what people do when they become resistant to one hormone and how they decide which one to try after that.

thank you again for the support. i am still hopeful that we can buy him some time.
Posted 5/24/2017 9:15 AM (GMT 0)
Snowcake,

if you are looking for possible treatments here is a link: neuroendocrine prostate cancer

This therapy may help too: Long-term tolerability of PRRT in 807 patients with neuroendocrine tumours
If you find such a study that your Dad could take part in.

George
Posted 5/24/2017 1:00 PM (GMT 0)
thank you so much, george!
Posted 5/24/2017 3:05 PM (GMT 0)
so now the med onc has said that chemo is not the answer to this type of cancer because it spreads so fast. last month, he said that if the cancer gets worse than just the one met, that he'll start chemo. so now i'm worried...does that mean there are no options?

he's going to discuss further at the appointment in a week's time. i have a feeling of dread about this...is he doing to say there is nothing that can be done? i just can't believe that. to not even try chemo to see if it slows things down?
Posted 5/24/2017 10:52 PM (GMT 0)
Snowcake
Your Dad's case seems to be following what was described in George's first link above: neuroendocrine prostate cancer. The very first sentence of the answer in that link really gives a disheartening prognosis. Unfortunately, this type of PC seems to be winning this battle no matter what treatment plan is followed. Once it is diagnosed, it attacks in a very short time frame. As I said in an earlier post, do all you can to relish the time that you and your Dad still have. If given the opportunity, explore the options your medical team present. Be grateful that you have this time. Many are envious of your relationship. Just as you are a blessing to your Dad, you have become a blessing to us here at HW.
Posted 5/24/2017 11:19 PM (GMT 0)
thank you, octorobo, i did see that link and read the same article when we first began researching this but i guess i was hoping there was something else out there. i'm just amazed that the cancer has technically been back since january 2016 and only one met, until now. it seemed to be moving pretty slowly for over a year. the only thing that changed was we did surgery and radiation on it. i keep wondering if that had anything to do with it.

the thing is, the onc hasn't done any systemic treatment except HT. we were trying to get the chemo done last month but he wanted to see how the spine met fared for another month before starting so he could measure the progress. and within that time everything just happened so fast sad

thank you also for your amazing kind words about me and my dad. you are all blessings to me and have definitely brought me back from the brink of despair many times. i appreciate this forum and all of you so much. this is a horrible disease but the support and kindness of people can help ease the distress.
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