oh, and also, we were in touch with university of upsalla in sweden for PRRT treatment (though my dad passed before he could get there, unfortunately). they were really great and quick to reply, here...
congrats on the great results, out cruisin'! i'm so happy for you! do you by any chance know why percentage your ki value is? if so, there is a clinical trial at princess margaret hospital in toronto...
mary, i am so very sorry for your loss and completely heartbroken for you both. you are both so brave and strong in the face of this. we lost our dad just over a month ago and there are some...
just updating this thread as it was supposed to be for information to anyone whose in a similar situation. in my dad's case, there was a singular spine met (first detected in mid-february, but we...
thank you all for such kind, compassionate and empathy-filled replies. also thank you for sharing such personal events, feelings, pain and anecdotes with me about your own losses. i'm so sorry to...
hi all, as some of you know, my dad was dealing with prostate cancer that had mutated into high grade neurodendocrine carcinoma after metastasising. his med onc decided on a wait and watch approach...
thanks cspivak. i think that's the problem at the moment - my dad is way too sick for treatments but i was hoping against hope that something would work out. we got told today he's too sick for...
thank you so much for those kind words, almost a 10. things are tough at the moment. today especially has been a tough day and it's so hard to see my dad go through this. he's done one round of chemo...
hi all, can anyone recommend the best place to get genetic testing of the tumour and preferably one that is fairly quick? thanks!...
thanks all. it has been a tough time. my dad is an inpatient so we're in the hospital pretty much permanently, been sleeping here etc. i want to be here every second of this. i do think my anger at...
beth and gary! this is such great news and has put a smile on my face despite the terrible week we've had with my dad's cancer. i hope it's suitable and works for gary! i'm so glad he's up to trying!...
thanks all. i appreciate the kind words and also words of wise advice. redwing, that's not quite what i was thinking when talking about treatment. i don't think they all bloomed from the one spine...
hi all, we just got news that my dad's cancer has spread even further and is moving super fast. mets that were 6mm a week ago are now 9 cm. mets absolutely everywhere, lymph nodes, entire...
argh i just felt like we were in a good position since it was just the one met and we found it and thought chemo would work better with a low volume. and now this :( i am just so devastated. i always...
hi all, we will be seeing dr. kwon soon and were wondering if there are any doctors people know of in the toronto area who are willing to work with him? we're not sure about our med onc...he decided...
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...
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...
thank you so much, george!...
i'm so sorry for your friend, i wish him the best. so heartbreaking. arthur on another thread posted this, which could possibly be an option?...
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...
thanks annie! my dad's urologist wasn't a urology oncologist, just a urologist (though i know there are good uros out there who treat cancer very well!) but unfortunately this one wasn't on the ball....
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...
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...
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...
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....
that's how i feel too, fairwind. i don't know, maybe there's an ego involved as well with him thinking he can do the job alone and doesn't need any "outside help". when my dad first got cancer, we...
thanks jiggett. which would you say works better for prostate cancer? and do you ingest it?...
jiggett that's so great you're feeling so good! i hope everything in the future goes well too. what is CBD oil and what are the benefits? does it slow down the cancer or it is for symptom relief?...
i'm so sorry as well, lee. that must've been such a shock, especially since you were on treatment at the time. hopefully the action plan now will help you and a good med/rad onc can get onboard. i...
hi all, i'm not sure if this question even has an answer, but i have some concerns with how my dad's urologist handled his PSA recurrence and i just want to know if what he did was "right"/standard...
congratulations, beth and gary! it's so great that gary will get to see and spend time with a new grandchild at this stage. sending love!...
hi celebrate life, i am so sorry to hear this and feel for both you and your husband. these decisions are not usually easy and i admire the strength and courage of both you are your husband. you have...
thanks so much for that info, tall allen! i know the info you shared earlier had also said that analogues can be somewhat effective but i was hoping to get the full treatment with the nuclear...
thanks annie! it sounds like your husband is doing well! i'm so happy for both of you! i hope the radiation goes well for him too. we were not offered any immunotherapy or trials for it, but the med...
Thanks, I have that one noted down and have been in touch with the heidelberg university though they haven't got back to me. i know there is a clinical trial at PMH involving lu-dotate but we're...
hi Tall Allen - I don't have the report in front of me but I will ask the oncologist. If it's positive, would that open the door to a specific therapy? Thank you again!...
hi all, just wanted to give another update. our med onc was hopeful that my dad's case was possibly an outlier - chemical recurrence in jan 2016 and only one bone met by feb 2017 is unusual in the...
thank you for this advice! and good wishes this is something we've never done before and i had assumed we would take a prescription to the pharmacy! seems like there is a whole other world out there...
thanks again, trailguy. my dad doesn't have both prostate and neuroendocrine cancer but rather his PC has mutated into the neuroendocrine strain of prostate cancer - which is a very rare type. so in...
for those in the toronto area, there is a clinic at sunnybrook hospital which specialises in neuroendocrine. it's the only one of its kind in canada. this is something i've just found out (we are at...
i think one thing to do (which for some reason didn't occur to me beforehand...probably because i'm still shellshocked) is to look up neuroendocrine tumour (NET) organisations. there are a few out...
thank you so much, trailguy! i'm not saying it will cure the cancer, but who knows, it may slow it down? this story had me intrigued and i've seen various individual cases like this over the years:...
hi all, i will be posting here with info as i get it, in case it helps anyone else in the future. but one thing i didn't realise before was the neuroendocrine is a spectrum and aggressiveness varies...
thank you all so much for the info, especially gunner34! we know it's not 100% clinically proven that it has anti-cancer benefits but there is enough out there for us to take that chance right now,...
does anyone have any info or tips on using medical marijuana for cancer? i've read that it has shrunk mets and controlled cancer for people. is there a specific way we need to prepare/use it for this...
thank you again, octorobo, i hope the same. we are going to throw everything at it - the list tall allen has provided is a starting point for us now and we're so grateful for it. i thought there was...
thank you octoboro. right now he is full of energy, feeling great and happy. the doc did not give a prognosis as we didn't ask for one and said that at this point we don't need to be super concerned,...
hi TA, i just looked at the path review again and it says "High grade neuroendocrine carcinoma", i was mistaken earlier that it's a high grade adenocarcinoma with neuroendocrine differentiation. i...
that's fantastic, w0hll! i hope you're celebrating in style :)...
thanks for the info TA. this is very helpful and we will bring it up with the med onc (who only mentioned platins). i am going to contact the german university as well and hopefully that will help my...