On Zytiga/ prednisone and Zoladex for 14 months. PSA went down to < 0.008 in October 2018 and slowly rose to 0.026 in April 2019 and then drop to 0.016 in April 2019. Read my profile for more details.
Above seems great yes? But I have a C3 neck tumour grown from 5 mm in September 2018 to 20mm end of 2018. Rest of bone Mets in spine etc seem dormant.
How can just 1 tumour grow when everyone else is stable?
Anyone else have progression whilst PSA is near or at undetectable levels?
Under standard of care in Canada I am going to get 5 fractions of stereotactic radiation at C3 beginning of June 2019. I think for a total of around 35Gy.
Then if my PSA rises my plan is to switch Zytiga/ prednisone to Zytiga/ dexamethasone and/ or try to BAT which I will have to do outside of my MO as not standard of care. I want to maximize Zytiga time as I have no significant side effects and believe that when my PSA rises I can resensitiwe to Zytiga as well as kill CRPC cells while temporarily in a super high testosterone environment.
Any comments much appreciated!
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nobaday
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I have had intermittent pain in neck and shoulder since December, when I sleep, when my head jerks slightly, when I turn my head sharply. I take Tylenol 500 to 1000mg from time to time which removes pain completely. A couple of CT scans have measured the tumour at around 20mm.
It bothers me when I read about others being made aware of the state of their metastisis so precisely....Im totally in the dark...maybe its so bad they want to spare me...who knows...as bad as a 20 mm tumour is at least you're being told about it and receiving treatment...ive never been told about the extent of my mets except in the most vague terms..like extensive....but now that im well I cannot understand why Im not seeing any proof of my recovery...ie a lousy bone scan...how much does one of these cost the Canadian Health care system....and Im being treated by one of the worlds most ambitious cancer research facilities in Vancouver. It sucks..im starting to take it personally.
I feel that you have to advocate for yourself to a big extent even if under the care of BCCA or emergency rooms. You only have to go to records to get a complete set of documents which give all the details.
Problem is interprovincial paroquial obstructionism. They don't cooperate....my initial scans were undertaken in Alberta...my BC medoncs made me collect and forward them...we should take the godam provincialism out of our medical delivery...enough of the insanity.
An amateur observation/question. The progression you describe is not “standard” Shouldn’t that change and expand the Doctors horizons to find other possible protocols that have had some success with low PSA and Met progression? Sounds like you are doing some research that suggests other treatment. Hopefully you will find a professional with the means to help look beyond a standard that may not apply to you.
I would consider enrolling for stereotactic radiation to your one met if you are oligometastatic or in the 4-10 range--there are clinical trials....Good luck...
Yes. I am having stereotactic radiation at C3 in June.
I do see the Indomethicin and Niclosamide trials at UCDavis. Let’s hope results are great! My MO here in Canada is only allowed to do standard of care... so no playing outside the box!
That’s why I mentioned high Testosterone which could do the same thing but which I should be able to get hold of ie. low cost testosterone cypionate injection at 2000mg/10 mL of which I would need about 2mL per cycle. And members on this site have successfully used it. And the only major downside... it might not work!
Thanks Fish, we were both diagnosed Nov 2017 and are both on Zytiga/ prednisone at basically undetectable levels and both have had/ are having bone met radiation.
I plan to start continue Zytiga and add indomethacin and switch to dexamethasone which is shown to continue effectiveness when switched with prednisone....after that, one day at a time.....doing some genetic testing in August....hope for the best, plan for the worst... get your life straight with God....watch the medical science daily...what else can I do?? Good luck....
Good luck Fish with your plan. What are your thoughts on BAT? Your plan sounds sounds good. I have to deal with my C3 tumour first. After that the dexamethasone switch, BAT and Lu177 in some country far away and now indomethicin are on my option list.
BAT is one of those things for later for me God willing...it works...the concern I have is when it doesn't....if I stay undetectable get an ADT vacation off Lupron and Zytiga--next on my list will be itraconazole and hydroxychloroquine while on vacation-- but the very next thing on my list while on adt and zytiga is the Dukoral vaccine... June is most likely... there are epidemiological studies from Sweden about improving OS, and there is some info about Dukoral possibly messing up PCa messaging for tumorigenesis... Now, under investigation for colorectal cancer...For $150--doses plus booster for 2 years later--worth the gamble IMHO...
FYI my MO said today he is not a fan of BAT “In my case with a few tumours, adding T could fuel tumour growth and only limited data in trials with picked patients is available”
I will not take BAT off my option list but put BAT at the bottom of my option list for now!
He was not aware of Indomethicin so I will show her m the trial next time.
They are doing a trial with Xtandi....the zytiga and indomethacin was a study...it is worth a try....squeeze the most out of these drugs IMHO...the radiation itself may cause some fluctuation in PSA from killing PCa cells--overall, it sould drive PSA back to undetectable...no reason though to not do indomethacin while doing radiation as far as I know...may help break resistance and enhance killing....Then, there is the abscopal effect with radiation....extra killing....good luck...
My MO wanted me to switch to chemo in January ( and stop Zytiga) but we waited until a scan on my spine which we expected to show growing tumours there as well... but spine stable!
I then asked for stereotactic radiation with the hope to zap this tumour or as u say wipe it out. I like Zytiga and prefer to hold off on chemo. My radiation oncologist is going ahead but is worried about side effects as tumour wrapped around books vessel to head.
I understand the PSA sensitivity. But the trend from October to March was slowly up. I would like to say I need take no action until say PSA 2 which typically is a requisite to start some clinical trials with another drug. I have no complex about my PSA results which I know are still extremely low but I have a complex that they are extremely low with a growing C3 tumour!!
I will ask my MO about Neuroendocrine cancer cells tomorrow.
It could be prostate adenocarcinoma that has transformed into small cell.
A biopsy might help you plan an appropriate treatment process, which might be the same as you are proposing but if it was lymphoma say, you would have different treatment
This story sounds familiar, and I'm very sorry about this turn in your condition. I had large C-2 and T-4 tumors at the start of this journey and had immediately had stereotactic radiation (SR) to eliminate them. While I believe that SR was the right decision, I must tell you that the position of the tumor makes SR risky - for me, it was only balanced by the risk of death.
As focused as the radiation was, it still essentially killed normal C-2 and C-3 bone. C-2 already had a healing fracture in it from a roller-coaster ride with my 16 y.o. daughter (yah, that's how I found out about my APCa...a broken neck from an amusement park ride...hurray).
The C-2 tumor was so large (with the intermingled mess of healing bone and tumor, accurate measurement was not possible for the tumor) that once it was killed, there was insufficient structure left in the vertebral body bone matrix - it slowly collapsed in on itself over the next year. I have a permanent "pathological fracture" of C-2, as the medicos call it, and I have some unnatural curving and pinching of my spinal column as it passes the C-2 debris field.
I will not lie. The side effects during treatment are horrible. I couldn't lift my head from the horizontal due to the pain, and there was some radiation burning to my esophagus. More importantly, the threat of permanent bone damage - and therefore c-spine stability and all that this entails - is real.
I have no definitive comment about your decision for SR - my wife was no fan and we hold different opinions on the long-term outcome. Simply put, my RO believed I was in imminent danger and I agreed.
HOWEVER... I do have definitive comment on recovery. A solid stabilization, rehabilitation, and monitoring program (MRI should suffice) needs to be in place and started immediately after SR treatments cease. I realized that oncologists are not orthopedic/spine specialists (...duh...) when they didn't catch the C-2 collapse until 10 months later (!).
Whether you decide to go through with SR or not, you should see a spine specialist now to get their take. If you can find one with experience in dealing with bone cancer, so much the better.
Good luck to you, Sombaday....er Nobaday! - Joe M.
Thanks for that... agrees with my RO. First post I have seen on C radiation so it confirms so much. Did you get the radiation in one dose or a # of fractions? What was the dose.
My RO is planning VERY carefully how much radiation will hit near the spine etc
I want the tumour zapped but hopefully I will not be zapped in the process. Difficult choices balancing risks when you want extended life but with quality.
Apologies! You see how quick I am, No-bad-day - I read it as "nobody" (some folks don't really like sharing, even with pseudonyms). Well, your intended name is much better!
I believe (subject to checking with my wife - I am currently traveling for work) that the treatment was 30 Gy over 10 fractions - pretty much 2 full weeks of 3 Gy/day with the weekend off in between (but it could have been 3 weeks of 2 Gy/day....it was kind of an unreal blur to me at the time....again, I'll check with my wife). It was Intensity-modulated radiation therapy (IMRT).
RE: Pain = Dunno. Long story short: My stupid pride and dislike of most pain meds' side effects makes my pain threshold abnormally high.
But to your point, when I started radiation, the C2 area likely had a lot more blood flow than normal both due to the greedy tumor and the body trying to heal the fracture. No doubt this contributed to the pain as both good and bad cells were killed by the radiation. It wasn't bad at first - but by the end of the second week I was a mess with the worst headaches I've ever experienced (the Inuit have 53 words for snow; I'm on my way with pain.... )
As for pain management, "Magic Mouthwash" (a prescribed mixture of lidocaine-diphenhydramine-antacid) is standard for throat rawness and some systemic like the hydrocodone/Tylenol mix they prescribed me is also standard. I used the MM religiously, but I can't tolerate opiods, as they tell my bowels to go on strike and move nothing. No thanks! I took ibuprofen instead. Oh, and confounding everything was the fact that I started taxotere chemo at the same time.
I still have pain in my c-spine, but it's not bone pain, it's muscular and likely due to C2's permanent shift. Like I've said before, I think radiation therapy saved my life. It is a source of comfort knowing that even if my neck is often "stiff," the time-bomb within it has been defused.
You are right - No. Bad. Days. Good luck, but keep 'em honest and consult a spine doctor if you need! Cheers - Joe M.
No Bad Day. Glad u got it! Updated my profile in your honour! We are all somebodie’s Somebody on this site and it’s great that this site enables all of us to help Somebody as you are helping me.
Yuh, I had the right "stough" (stupid + tough) alright.... Whoever said that God takes care of babies and fools was right! This post was just what I needed - I'm in San Diego for work but feeling extremely drained and without my wife I was feeling cheated, lonely, and a bit bitter.
This post has reminded me that all of us have had some amazing journeys both pre and post PCa. Nobadays is looking forward to new ammunition to use in his fight and doing the HealthUnlocked thing in researching and preparing. I should be thankful for my here and now, regardless of what shape it takes!
APC is a blitz and a blur at times . You are a bad ass working . I used to be on the road with work most of the year. Hotels lose there charm. Hope that you’re home soon with your wife . Take it easy . Thanks for sharing that story. Your one tuff guy. Not being funny.
Coming from you, my friend, that’s high praise and I will humbly accept. Yes, my wife is a person I simply couldn’t do without, like yours for you, and I can’t wait for the week to be done.
Not a good cook, though, as she would readily admit!!.....
So you are the chef? I was a bachelor until 53 .I thought I was a good cook . My wife is a natural chef so I don’t step on her pretty feet . I stay out of the kitchen . She is my reason to be here brother .. Going home is a sweet reward from the road . Peace guy.
I had symptoms for years and never went to the doctor. I was mad at myself for almost killing myself . More so 8 was pissed that I messed up my sweethearts life as well . It’s been 4 yrs of hell with areas of sunshine and love . For me ,life is worth suffering some in order to feel the love we receive. I dont know how my single guy friends endure with APC .My friend nick named “ Lucky because you take one look at this guy and you see one eye missing a few fingers gone ,walks with a wicked limp but the nicest guy. He had a #3 pc did the D’ vinchi 6 yrs ago . It nicked his colon ,had many surgeries .They used some mess that failed on his intestines ,there is a class action on this mess . He has no pc but six months ago the mesh failed and he went into ICU ,was therer 6 weeks died twice and was revived. Then somehow he went again only to return back to icu 2 months later .He was there 2 months this time .This time he died three times They brought him back . He had MrSa .He said he was looking down upon himself more than once on the way out . I went to see him . He went from 180 now down to 139 .. he had a big tube down his throat and couldn’t speak . Guess what ? He pulled out again .. Both times I thought he was a goner .. He coming out to our ranch in a few days . The will to live he said . This friend had lived a tuff life from the get go . But he ain’t giving up . His wife of 30 years left him and a few months later he was in icu . It as a mutual break up . But still being alone sucks when you need help . I’m glad that you too ,have love at home . We are lucky .. I was in SD a few months ago and in LA last week . Home sweet home . You’ll be there soon . Take it easy , don’t work too hard .. soon come..
Right-on Nalakrats..this is especially true if you have changed from your original PSA Assay to Ultra Sensitive Assay...sometimes and I suspect these “ machines “ have to be Re-calculated.
Just my two cents worth...I believe Nalakrats has it right!
Met with my MO today. He does not think it’s NEPC as the tumour has remained a similar size from January to March by CT scan so not aggressively growing... good news I think! I will do a Chromogranin A test anyway with my next bloodwork before we hit the tumour with stereotactic radiation beginning of June 2019
Tumour is in my cervical spine at C3 roughly level with bottom of earlobe and above Adam’s apple. No swelling of lymph nodes. Pain present when I twist my head sharply or stop car with a jerk and sometimes when sleeping. Ongoing since December 2018.
If your neck pain has been persistent for weeks and not just a pain in the neck from doing taxes, thinking of the ex wife, having the flu or doing some activity THEN HAVE A CT SCAN to check it out.
Apparently tumour growth is possible blue in a low PSA environment, or at least in my case.
I wish I could help somehow. I'm struggling with negative thoughts because I keep having pain and now burning and blood in my urine. Need to get back to the docs.
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I'm struggling with negative thoughts because I keep having pain and now burning and blood in my urine. Need to get back to the docs.
UPDATE
PSA Result
RO said 6-12 months
Fluctuations psa
Zytiga vs Docetaxel Sitrep and new question.
