New Member from Seattle

[subliminaldood]

New member intro:

Get comfortable, long story ahead…

Hi, I’m Dave… age 59… Seattle, Wa… DX stage 4 MCRPCa in July 2020. Gleason 9 here too.

Originally went to the doc due to a pain in the back on the spine, it was obviously a met on a rib just happened to be on the one with the nerve going down the inside of the left arm, through the funny bone, on to the small fingers. Started getting a numb elbow, etc. Due to Covid protocols, diagnosis took 5 or 6 weeks, no lab techs, had to schedule a separate appt for every different test. Blood test revealed PSA of 86 at the time. Still they didn’t know if it was malignant or benign so MRI scheduled. Immediately after MRI had chicken for dinner and two pints of beer. Could not pee after that. Had to go to ER the next day to get catheterized. Doctor said, have you got the results of that MRI from yesterday yet? I of course had not… Doc then informed me of the cancer, did more scans, and said I was being admitted so neurosurgeons could look over my spinal imaging to see the extent of any bone damage or tumors in the spinal column/brain.

Surgeons looked and said I was “very treatable!! No surgery required!” They wanted a biopsy and tried to get one from the left ilium where they saw a tumor… They missed. Next I did an actual prostate biopsy. Ouch. Not fun. Only local lidocaine for that. Of course a few weeks have now passed and my PSA has increased to 110.

First course of treatment (besides casodex/lupron) was radiation at Swedish Cancer Institute in Seattle… Dr Buscariollo… Excellent service and good results, 24 sessions 5 days a week. After a brief rest Dosetaxel for six sessions… every three weeks, Dr Zhao. At the end of Chemo PSA had dropped to 3.0!! I handled it pretty well... However as soon as the Chemo was done PSA started to climb, first to 4.1 in Feb, then by May up to 22.7… This is when Dr Zhao suggested genetic testing… Which found the BRCA2 mutation… Which explained the rising PSA… I am now diagnosed as Metastatic Castration Resistant!! Dr Z want’s to go with Lynparza but the insurance refuses because I haven’t had enough ADT yet apparently… Fortunately, they found a study… Which paired Xtandi with a PARP inhibitor of another brand (Pfizer). PSA dropped to 10 over the next four weeks then started rising again. Dr figured I had got the placebo and not the PARP inhibitor in the trial so we stopped when my PSA was up to 26 (august 2021) at which time the insurance would now approve Lynparza (only $17,500 per bottle of 120 pills) because I had now unsuccessfully completed another round of ADT with the Xtandi. Lyparza started at the same time I co-incidentally reconnected with an old friend from Oregon who knew someone in the RSO manufacturing business. I started the Lynparza on 8/5… PSA 23.1… Started RSO on 8/15 PSA now 26…. Next blood work 9/13 PSA 5.5!! PSA 1.1 on 10/21… Feeling pretty good physically and mentally I was looking forward to the next blood test… 11/30… PSA… 10.1!!!

Crap… Lynparza quit working…

During the above time there were some added symptoms. In June of ’21 I started feeling like a crippled arthritic with lots of joint pain and a frequently cramping right glute muscle. Met on right rib near sciatic nerve apparently. Pain was high, taking 8 ibuprofen and 6 Tylenol per day… Until I got the RSO… I will say even if the RSO does not kill cancer in my case, it has done wonders for the pain… I was completely off the pain pills 10 days after starting the RSO!! This guys RSO in case anyone is wondering tests at 49% CBD and 29% THC, full spectrum, full plant used, one strain, Pennywise.

Also in this time the doc told me “food doesn’t matter.” Now looking back I can see that he probably meant nothing I could eat would cure my cancer… But in fact FOOD DOES MATTER!! But what did I do? Got an order of my favorite Chinese takeout… OMG I was like a 90 year old 2 hours later barely able to walk in such joint pain!! OK by the next day. Inflammation.

Now as a bit of a background I have done Yoga, Tai Chi, Chi Gong, and Reiki since the 90’s. In the past I was a healthy eating vegetarian for most of 7 years from the late 90’s to mid 00’s. I know nutrition and healthy eating as well as relaxation techniques… Here is what I have found, consistent with most of the rest of you… Eat healthy! Low glycemic index foods, lots of fruit, veggies, and oily fish. Exercise!! My doctor in this new trial said “every time you exercise your muscles are stealing oxygen from the cancer cells!” I have no idea if that is true but every time I do exercise I feel great after. I am not an extreme exerciser, just trying to get between 5000 and 15k steps a day walking hills in my neighborhood or at work. Also I was a beer drinker (and homebrewer) consuming 3 or 4 pints per day. No more beer now.

I have not missed a day of work… but then again I am a freelancer and only work when hired on a per day basis… Of course Covid cancelled a lot of work during 2020 as I work mainly in the Sports and Live events production industry. Luckily I have one client who picks up my health insurance which is very good thankfully!!

Anyway, to summarize… The healthy eating and exercise lead to lower inflammation for me. At the last reading a month ago my PSA is at 26 again and rising. I’m on no meds or pain pills right now except the Lupron, RSO, Turkey Tail Mushroom pills (Host Defense) for immune system boost, and the usual multivitamins with zinc/calcium/and D3... I am not in any pain at all, I am starting to feel some of the mets, left ilium especially but apparently it's not on a nerve this time… Or the RSO really works well for this… I haven’t tried going without to see what happens yet…

The reason I wrote up this long intro was because after lurking here for a few weeks I have quickly grown to appreciate the wisdom and comradery here.

It’s very easy to panic when your meds stop working. I have found in just a few weeks a lot of reassurance from reading what everyone else is going through. We are not alone here… We are all different but we are not alone.

So next up at the start of FEB going to a PT-112 Trial that is just starting… They are still recruiting actually… at Seattle Cancer Care Alliance… Dr Cheng in charge of this study… The trial is about dosage so both groups in the trial get the drug, just different amounts. PT112 looks very interesting, not much info on here about it yet… other than a few it didn’t work for but that comes with the territory of both trials and having the mutation thing added in. The alternate would be going back for more Chemo but a different one… Cabazataxel. Both my regular MO and the trial docs suggest the PT112 as a better option… Still the Cabazataxel is probably next in line if/when the PT112 stops working…

However if you read the marketing info on the PT112 it seems designed for cases like mine and the docs say it has been most responsive with BRCA patients though the trial is not just for people with that specific mutation.

But I digress… This is my long way of saying hi and thank you all for sharing what can be to some very private information. We are all better together!! After reading a bunch of your stories I actually feel better about my own situation too, which was not really the intent of why I came here… Looking for PT112 info was… You know how this can be a giant emotional roller coaster…. (and compared to some of you, I'm just getting started!!)

You all just made it a little better for me and for that I thank you. None of us know what the future holds… Live your life! Get out of pain! We can do this!! Even if we don’t yet know exactly how.

d

PS one final bit of advice, get the genetic testing done if you have advanced PCa.

[Javelin18]

Welcome to our not-so-little club. Nobody intends to join it, but are glad when they do.

I have a somewhat similar story, with my cancer discovered on an MRI after I fell during a fishing trip in Alaska. I found within a month that I was castration resistant. It’s just over a year since my diagnosis.

I lived in Seattle for a few years, and met my wife at Ray’s Boathouse. Your mention of oily fish reminds me of gorging myself on wild salmon, and waiting for Copper River Salmon every year. I used to go crabbing at Camano Island every year. It’s a beautiful place, where it isn’t raining.

I’m wondering if you have the clinicaltrials,gov trial number for PT112. It looks promising with the the way it activates the immune system.

Good luck with your trial. I’d like to hear how it works for you. I’m getting Lu -PSMA treatment at UCLA through an early access program today. I get my blood check today after my second treatment. I’m hoping my numbers head down. I could use some good news. From my clinical signs, I seem to be improving, but would like some confirmation.

[NotAlwaysSunshine in reply to Javelin18]

Clinical Trial number is NCTO2266745 NCT03409458I am going to do some research today on this trial. Worth a try. My husband just started Lynparza.

[Javelin18 in reply to NotAlwaysSunshine]

Thanks for the links. There was a typo in the first trial number, with an O Instead a 0. Number is NCT02266745

If I don’t get a durable response from the Lu-PSMA , this might work well for me, since we have family in Seattle.

[subliminaldood in reply to Javelin18]

NCT02266745 is the correct study, Best of luck! I will update as it unfolds. Thanks!

[SuppWife]

Welcome from a co-pilot (here for my husband) and thanks for sharing your journey so far. I’ve gained so much from the people on this site. It’s a godsend. Your sharing your story is part of what makes this such a valuable “place.” 🙏🏻❤️

[Lyubov]

What is RSO?

[subliminaldood in reply to Lyubov]

Rick Simpson Oil... Concentrated cannabis.

[Lyubov in reply to subliminaldood]

Wow!

[youngigor]

Try stronger RSO (or use 3X as much?).

You posted:

"This guys RSO in case anyone is wondering tests at 49% CBD and 29% THC, full spectrum, full plant used, one strain, Pennywise."

The RSO I'm using is circa 90 % THC, per the vendor.

From way of leaf:

Is Pennywise an indica or sativa?

Pennywise weed is an indica-dominant hybrid with a 70:30 indica to sativa ratio.

From Rick Simpson:

In his book, Rick starts w/ 1 lb of indica (or indica rich) bud w/ 20 % THC which theoretically could make 90 g of oil but because of low quality bud he'll settle for 60 g of RSO. He notes that he settles for lower quality bud which is frequently all he can find.

It's wonderful to have a friend who can supply the RSO - have read estimates that 80 % of "RSO" sold on the internet isn't, or is not full strength. You may not be getting enough, at least if you want to try Rick's approach.

Suppository application is recommended by Rick for prostate cancer.

From my experience:

Started with the edible route, 1/2 grain of rice size serving of the RSO and felt mild buzz. Next day tried a 1.5 grain of rice serving had trouble walking straight so switched to suppository. With suppository little or no buzz.

No results yet on psa - take another blood test next week - so no claim of cure tho certainly enjoying better sleep the last month or so.

Hope you find something that works for you.

[subliminaldood in reply to youngigor]

Thanks for the reply!

Interesting thing about the RSO is apparently its different for everyone. I'm taking one gram per day of the oil, sublingually. No problems walking, just a light increase in the sensory areas and of course the great sleep!

I know in the second month I was on it I was working a lot and did have trouble getting the full one gram dose every day. Probably somewhere between half and 3/4 gram per day.

The point of my guys oil is 2:1 CBD to THC ratio... Allows for better function in daily life.

Since the Lynparza ended at the beginning of the month I have been making sure to get the full dose every day. The next blood work will by my first on RSO only. It will be interesting to see what happens. Like I said, If all it does is pain relief and wonderful sleep i'm ok with it.

The one other thing I have no information about at all is RSO and the BRCA2 mutation. Can my cancer become non responsive to this just like it has all the other meds I've been on so far? Do you have anything on that? And if that is possible, I wonder if making the oil from a different strain would make it responsive again.

[treedown]

Welcome and glad you decided to come out of the shadows. If I am not mistaken others have had success with Keytruda for BRCA2. Chugach comes to mind though my memory may not serve.

[subliminaldood in reply to treedown]

Thanks! The Keytruda does look interesting. It's on the list but I decided to try this trial first. My doc's would have done another round of chemo first though, The Cabazataxel... To knock down the PSA some then try the Keytruda.

[Hidden]

Did your primary care doctor not screen you for prostate cancer? No PSA tests or DRE's prior to your being diagnosed?

[subliminaldood in reply to Hidden]

Yes, That was what I was describing as difficult during the initial months of Covid. There were no lab techs in the primary care doctors office. Had to make Labcorps appointments all over town. Once the diagnosis was obtained after 5 weeks, the primary physician referred me to a Urologist for the DRE and Biopsy. Oncologists followed that.

Sorry I did skip a lot of smaller details as the tome was getting long.

In case you are inferring that my primary care doc wasn't screening me, that is on me, I had not been going in for annual prostate exams. I only went in after the back pain started, and of course you know what that means.

[Hidden in reply to subliminaldood]

It is a shame when annual screening doesn't happen and you aren't diagnosed until symptoms emerge. Water under the bridge I guess. How do we get more men to recognize the need for this kind of screening? Welcome to the group anyway. You aren't alone and not the first to be diagnosed under these circumstances.

[subliminaldood in reply to Hidden]

Yes, unfortunately water under the bridge... But... One more evangelist on the topic here!! Just since I've been diagnosed I've had the talk with several friends and family members.

[Hidden in reply to subliminaldood]

That's what I was hoping you'd say. I've talked to a number of men on this subject myself.

[j-o-h-n]

Greetings sub,This is like Allstate...... you're in good hands here............

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 01/21/2022 6:10 PM EST