Is it okay to wait 1-2 weeks to start Casodex in order to get a 2nd opinion on treatment / hormone therapy recommendations ?
My relative just found out he is Gleason 9 and urologist wants to start him right away on Casodex and then Lupron shot in 2 weeks. After that he would start radiation in 1 month.
We are trying to get appt at Dana Farber in Boston next week.
You can wait two weeks but Casodex is hormone therapy "light" and will not have significant side effects. The second opinion will not be that Casodex is wrong. You could postpone Lupron and continue with Casodex until you got the second opinion.
are there any cases where someone is Gleason 9 and have not been put on adt drugs like lupron.
You could take Degarelix or Relugolix instead. Or you may want to take part in the PSMAddition trial.
> you may want to take part in the PSMAddition trial.
clinicaltrials.gov/ct2/show...
> Up to 45 days of luteinizing hormone-releasing hormone (LHRH) agonist /antagonists or bilateral orchiectomy with or without first generation anti-androgen (e.g. bicalutamide, flutamide) for metastatic prostate cancer is allowed prior to ICF signature.
I guess they have 45 days. But yea might close this option to participate.
Has he had a bone scan and a PSMA PET/CT? See my response here:
healthunlocked.com/advanced...
they are scheduling him for bone scan in 2-3 weeks. I asked about PET scan and he said not needed. I read that PSMA PET SCAN was 92% accurate to detect metastatic spread vs. only 65% for CT / Bone scan. Seems like PSMA PET SCAN is the #1 / gold standard for detecting cancer outside of prostate ?
Please read the link I provided.
This is what Tall Allen is asking you to read:
Tall_Allen profile imageTall_Allen
1 day ago
Neither Gleason 9, the MRI showing stage T3b, or the irregularly shaped lymph nodes indicate the cancer has spread outside the prostate. You require further diagnosis before a treatment plan can be devised. You have to take it one step at a time.
(1) The first step is to get a bone scan/CT.
(2) If the bone scan/CT is negative, the next step is to get a PSMA PET/CT. If the PSMA PET/CT is positive, you would go ahead with radiation to your prostate ('debulking").
(3) If the bone scan/CT is positive, and there are fewer than 4 distant metastases , you would go ahead with radiation to your prostate ('debulking"), and consider triplet therapy, or the PSMAddition clinical trial.
(4) If the bone scan/CT is positive and there are more than 4 distant metastases, you should consider triplet therapy or the PSMAddition clinical trial.
(5) If both the bone scan/CT and the PET/CT are negative (or if only pelvic lymph nodes are positive), you can proceed with curative whole pelvic radiation with adjuvant intensified hormone therapy.
I hope that's not too confusing. Please write after you get your scan(s), and I can explain more.
I'd suggest starting with Casodex, as others have suggested, and getting a PSMA PET SCAN ASAP. Please see the attached.
youtube.com/watch?v=81iAzYV...
Fight On!
Andy
A few weeks on Casodex, apart from buying you time to get additional opinions and become more knowledgeable, can potentially increase the PSMA excretion of the cancerous cells. A PSMA PET/CT will tell you it it is still localized or metastatic. In the former case, radical prostatectomy may be an additional option.
so the Casodex will help make the PEt scan better , highlight potential cancer spots better while on Casodex ?
There are trials testifying this for the second tier antiandrogen Enzalutamide. The patent of Bicalutamide (Casodex) has long ago expired, so no interest for trials. Yet, their lines of action are very similar, such as it seems reasonable to speculate that it has that property too.
From what I've seen with my dad casidex has the least side effects by comparison so you might want to start that and hold off on a thing else until second opinion . I believe second opinions are super important from all I've seen and I suggest that you continue to get second opinions through life ahead . I know the waiting can disturb any calm so if you feel you want to get on top of things asap you might want to start the casodex and maybe make a plan for nutrition and any supplements that can keep down inflammation through treatment such as curcumin just as an example . My dad has been on lupron seven years and I took lupron ( female ) for Endo for six months . It drops your hormones quite significantly and that will cause dide effects . It seems most have been on lupron so it's somewhere in your future , but it is your body and perhaps starting one bf the rest will allow you to see the side effects of one vs not knowing which is causing what . That's the plus of starting the casodex in my humble opinion .I speak though as a daughter and from what I've learned and hope the guys on here can give you more detail . Con: you feel rushed Pro: one drug started prior separates the meds so you know what is leading to what . I wish you strength ,humour ,many non medical vacations ,love and light on your journey . Xoxo Erica if you choose to start nothing yet perhaps focus on your nutritional plan so you indeed are starting to prepare your body and also starting to kick some PCA ass!
You aren't in a position 'to self-diagnose' because you are lacking some key information and tests to choose the best options for you moving forward.
Tall_Allen's 'content' has been provided as a proper / typical route to travel.
My DX at the time of 'discovery' 6.5 years ago was worse that what you have presented so far for 'us' to digest in this post. (I'm in early Stage 4)
In addition, the urge to 'panic and/or get several opinions' is understandable but the plan to action still needs to be developed.
I thought I was 'dead man walking' when I found out !
My imminent passing was an over-reaction to fear and the unknown.
Today, I'm undetectable and have been for nearly 2 years and counting. My current prognosis is 'better than expected' - I should be around for several more years.
I feel pretty good most of the time. My #1 side effect is fatigue - which can be managed.
I have been undetectable TWICE in my journey - I had 'radiation (the max allowed) ; PSMA; several bone and CT scans and part of TWO clinical trials.
My ongoing treatment consists of 150 mg of 'Casodex' (mono-therapy) daily and it just keeps working (I'm VERY fortunate to be part of a group that can do THIS). Many of the side effects of 'stronger' ADT drugs aren't happening to me - that is what really makes me happy.
I play golf and curling - no special diet(s), drink 'socially', get monitored and tested every 3 months (clinical trials) and admit to taking some supplements - but I don't want to suggest that would work for everyone/anyone.
Time will tell - get ready to be a survivor and KNOW that some things will change that you'll need to adapt to.
Wishing you well on your journey .....
Gleason 9 here. I was diagnosed 3 years ago. It took me about 2 months to decide on treatment (I consulted with 5 different docs/hospitals and lots of scans). But during that time I was on casodex. My first doc gave me casodex right away to keep the cancer from growing while I decided on treatment. My sense is it doesnt interfere with different treatment options, isn’t too bad in terms of side effects and will keep the cancer at bay while you make a decision.
I ultimately decided on an nih trial of intensive ADT followed by surgery, but that is another story. For now, I think it’s not a bad idea to take the casodex while you decide.
Your at a great hospital at Dana Farber.
Casodex is really the first step to ADT. Stops the testosterone bounce up.Speaking as a G9 aggressive pca patient there are no negatives for taking it and a slight negative for not taking it.
thank you. Are you also doing lupron shots and radiation ? Did you get PET Scan ? thanks!
I am in my 8th year after diagnosis.A few weeks after told of Cancer started Casodex followed by Lupron for 2 years. IGRT 25 sessions then 2 HDR Brachygerapy.
Along the way PET Scan and biopsy of local lymph nodes the zapped one to be safe. Even had MRI. All good.
Two yrs ago psa doubled then hit over 2 after a 6 month Eligard. Started monthly Lupron and Nubeqa. Now 19 months in psa <0.02.
Soon 75 and living good.
Continue Casodex or move to Lupron?
Who is a good doctor for 2nd opinion?
2nd Opinion. 
Urologist or Oncologist for 2nd opinion and treatment
Casodex and headaches
