Axumin scan results : Hey gang... - Advanced Prostate...

Advanced Prostate Cancer
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Axumin scan results

dockam
dockam
16 Replies

Hey gang,

Kaiser MO got me the scan results. Looks good except for a suspicious area that lit up. She wants to use radiation. I wanna do Taxotere again, as then I could do a whole body approach vs a local one. My previous MO agrees with me - he saved my life by allowing me to have 15 Taxotere chemo sessions in 2015, despite no other MO's at Tumor Board agreeing.

BTW, did NYC marathon with Team ZERO on 11/03. Made so many connections: a gent saw back bib and told me he was back on TX despite RP years ago, 1st time lady running for Dad who passed from Glioblastoma, a lady 7 yr survivor from hemangioglioblastoma, and a young lady at mile 23 who was cramping up and we finished together hand in hand.

Had shot of Schnapps, shots of Tequila, a Modelo and a White Claw along the course. I chugged that one for the ladies, then toasted the other drinkers along the course at mile 18.

Life is good. Completed my 153rd marathon. And doing the ZERO 5k in Bakersfield on 11/09 with Team Kam Ohana - the largest team there ❤️

My best to y'all on your Camino

Fight on Brothers

Randy

16 Replies
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Tall_Allen

It's not a metastasis - why do chemo for it? Have you had any metastases detected at some point?

2 likes
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dockam
dockam
in reply to Tall_Allen

Yes, Mets to L ureter lymph nodes and that constricted the ureter. Stents placed to keep patent, they're out now. My concern is missing microMets/dormant PCa elsewhere in body. PSA went to 7.2 from 4.4 over 3 months with T under 14

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Tall_Allen
Tall_Allen
in reply to dockam

One thing to consider is that docetaxel doesn't keep working indefinitely. Are you using Zytiga?

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dockam
dockam
in reply to Tall_Allen

No, just ADT(Lupron/Casodex), Metformin, and Lipitor. Dunno if Kaiser would Auth Zytiga - kinda pricey. Orginal MO said a Taxotere rechallange and not Cabazitaxel

Thanks for all your input on HU!

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Tall_Allen
Tall_Allen
in reply to dockam

You are metastatic and castration resistant - Kaiser should allow you to get either Zytiga or Xtandi. That should take care of systemic micromets, while preventing docetaxel resistance. Meanwhile, you can zap the prostate nodule. This way you would get both systemic and local therapy. Consider Provenge too, when you zap it.

3 likes
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dockam
dockam
in reply to Tall_Allen

Okay, thank you♥️.

Still awaiting an appt with Kaiser MO. Damn Medical megacomplex

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ImaSurvivor1
ImaSurvivor1
in reply to dockam

This is the perfect opportunity to get out of Kaiser. I did last year at this time when the MO kept telling me he couldn't/wouldn't give me any scans, etc. My wife is bailing out of Kaiser this year. He Primary Care Physician told her "Well, you're getting older" and did nothing for her for the last few years. You have until Dec. 7 to switch to original medicare and buy a Medicare Supplement plan for drug coverage. Now I can go to any doctor anywhere who takes Medicare, not just the local Kaiser doctor. I can get a real 2nd opinion if I want one. In my experience there are no 2nd opinions in Kaiser; they just send you to another Kaiser doctor who will rubber stamp what the first one said. What can we expect, really? They get the same number of dollars from Medicare for each patient, whether they provide extensive, expensive treatment or no treatment.

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Rocketman1960

Agree with Allen. SBRT can locally zap and systemic as well. Kaiser has been very good to me. Currently on Xtandi, Lupron and have had both Salvage radiation and SBRT with them. I consider their care world class.

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gyancey
gyancey
in reply to dockam

I'm with Kaiser as well and my Doc has me on Zytiiga/Lupron. Should not be an issue.

Good luck!

1 like
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keepinon
keepinon
in reply to dockam

I am a Kaiser patient near Sacramento. I am sure it depends on your type of insurance. But much to my surprise my Zytiga cost is $10

per month!

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pilot52

Wait a go on the run!!! I am into my fourth week on a Peloton....I am addicted . First two weeks a little saddle sore and you have to set the bike up correctly..I over trained initially and my hip flexors paid the price...now I am wearing my opponent's down in singles playing Pickleball. they are 6 to 8 years younger....the coaching and scenic rides are the bomb. I woke up the other night a 2 took a 30 min scenic ride then a shower and read. Hit the bed around 4 am...Got another 3 hrs and felt great....I cannot sleep in the day time except for a very short power nap.....I am describing all of this for those who are on the bubble about exercise.....Pura Vida from Georgia. 37 degrees!!! Gracie loves it!! Blue Skies to all !! and good luck with what ever decision you make....

3 likes
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Princeps

👍😉

Cheers!

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RayF

Kaiser had me on Lupron and Zytiga from the get go. So they will pay for it.

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abmicro

I worked for Kaiser for 20 years. Be careful with advice from SCAL Kaiser oncology. You have to interview many to find a good one. HealthUnlocked has good info. Take what you want to do and present it to several oncologists until you find the one that does not give you any trouble.

Kaiser pays for everything as long as somebody there writes the prescription for it. I did $50,000 worth of Leukine in 2009 at Kaiser and it cost me $5 copay. A good urologist there was cool about it and wrote the prescription after I brought him justification papers from Dr Charles E Myers. At the same time, I also did about $15,000 wort of viville dot estrodiol patches, and Ketoconazale. In 2008, all 3 were considered "off label" and not approved for prostate cancer. Over the years, estrodiol got approved for prostate cancer, and Zytiga superseded Ketoconazale.

When I went to pick up the meds in WLA, they handed me the Leukine in cooler bags, gave me the Keto, but blocked the estrodiol patches. An idiot Jr pharmacist blocked it because I was a male, not female. Showed him the Myers papers and invoked the high name of Dr Gray, chief pharmacist for all of Kaiser SCAL. Told him I was currently working for Dr Gray. He trembled when he heard me name drop that name and handed me my meds. Both Myers and that urologist are now retired. Because of them, I got the longest remission I ever had in my 18 years fighting the beast.

If you are on Medicare disability, consider temporarily moving out of the area to trigger a new enrollment to get you out of an HMO so you can switch to a PPO and go to any Dr in the USA without a referral. If you are in an HMO you can NOT switch to a PPO even during November/December open enrollment. Medicare locks you into an HMO if you are in one unless you move out of area.

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monte1111
monte1111
in reply to abmicro

Good to know. So much fine print. I'll be sticking with my Kaiser HMO for a while. Doing good, SOC.

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rscic

So what about both ..... maybe focused radiation on the axumin spot and systemic for micromets???? Also, consider a PSMA study as you have a positive Axumin study and PSMA is more sensitive. Please see figure 4 in the following publication: practicalradonc.org/article...

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