**WARNING** This discussion of my journey is way out of the Box. Don't get caught up in it.

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Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 3/7/2018 4:16 PM (GMT -6)   
First and foremost, MY journey and approach to living with Pca is mine and mine alone. I do not intend to suggest or try to persuade anyone on how they should approach their own battle and journey with Pca.

I will be 70 in August of this year; I was diagnosed with Pca in June of 2009, with a PSA of 6.4 as a Gleason 7 (3+4), I was just short of my 61st birthday. I found this forum in August of 2009 and have never left.

After a lot of research, I decided on surgery and went to Detroit in September 2009 and had surgery by Dr. Menon. Pathology results changed my GL to 4+3. I had no issues with incontinence following surgery and was back on the College ballfields umpiring in November 2009.

Following surgery, I began my relationship with my Oncologist at MD Anderson, Orlando FL. PSA tests following surgery indicated that Pca cells had already escaped the prostate. In December 2009 I began radiation to the prostate bed area, 70Gy in 35 treatments that ended in January 2010. PSA in December 2010 was 3.9 and rising.

I have been with my Onco since that time and am quite comfortable with his approach. We have a strong collaborative relationship. Everything we do (or not) is arrived at after much back and forth discussion. I bring him clinical trial info and other research and we discuss things through. To date I have been through 4 clinical trials at the NIH. All of them were diagnostic in scope because I strive to have all of the information I can when making decisions with my Onco. I do urge others to do the same.

After my radiation my Onco and I discussed my rising PSA. He told me he was charged with 3 things in my care; 1) to cure me of cancer 2) to allow me to have quality of life and 3) to keep me from dying. Our discussion about the rising PSA was so much different than what I have seen here. His take was that I would begin ADT or something, when we had a target to shoot at and with which to measure the results of the treatment. We determined and agreed that he was not treating me based on a number, rather it would be based on proven progression of my disease. He stated that active treatment because of a number was like suspecting there were roaches in my house. To just go around blasting at the walls with a shotgun with no idea where they were would provide no hard evidence if my tactic was successful.

At this point I need to add that starting in November 2005 I had been the care giver for my wife when she was diagnosed with cancer. Seeing what she was going through gave me a very different perspective on my cancer. She passed away in June 2012. Compared to hers mine was and is a walk in the park. So waiting to start something did not frighten me. Death does not frighten me near as much as living with an absolutely “sucky” QoL.

In January of 2014 scans finally found involvement in 4 lymph nodes. These nodes were and still are measured in mm, although my PSA had risen to 92.50.

In February 2014, I began treatment with Lupron on a clinical trial coupled with TAK 700. After 6 months the numbers indicated the TAK was doing nothing for me and I was taken off the trial but continued Lupron for the remainder of the year.

In February 2015 my PSA had reached a low of 4.87 and we agreed that I would take time off from drugs with continued testing testing to monitor my PSA. I spent 2015 off drugs and a much improved QoL.

In February 2016 my PSA had risen to a very scary number of 143.05. However, my scans revealed that I continued to have no bone issues and there were no new nodes, just the same ones and still being measured in mm.

We agreed that I would begin another year of Lupron, but this time we added two, 4 treatment rounds of Taxotere. February 2017 my PSA was down from 143.05 to 26.35. With that response we decided that I would go off drugs with testing at 6 months.

2017 was also the year that I began my own designed Clinical Trial. Florida had voted to become a Medical Herb state. I had already been doing research about the effects of marijuana on cancer. There have been trials going on at various places around the world on this, but nothing official in the US. The medical profession can’t because it is still a class 1 drug that was outlawed in 1937.

My 2017 six months scan were still the same, nothing in the bones and nodes that are still measured in mm with no growth and some shrinkage.

In fact, my February 2018 scans found that there were only 2 that are prevalent on the scans and they had to look really hard to find the others. They were not even reported on the findings of the scan.

My August 2017 testing had my PSA at 30.59 and February 2018 measured it at 46.56. This is the lowest my PSA has been since March 2015. My PSA had risen nothing like it had before and had not even doubled, much less exploded like it had in my previous times with no Lupton or other drugs.

I had a lengthy meeting with my Onco this last Monday. He was thrilled with my numbers and ready to agree that 2018 would be a no drug year for me with my usual 6 months testing. It was at this point that I told him that I had been conducting my own clinical trial for the entire year. When he asked what I had been doing I handed him a stack of research and trial papers that I had printed out on the effects of treating PCA with medical herb.

His response really surprised me. He showed a little anger, but it was not directed at me. Instead he said, that it was this kind of information that the medical profession has known about for some time and desperately are wanting to conduct clinical trials in this country. But their hands are tied because of the FDA and Federal regulations.

In the end he told me to continue my “Clinical Trial” and he would see me in 6 months. He added that going forward we would only do the bone scan yearly while still doing the soft tissue scans every 6 months.

As stated in the first paragraph, this journey and approach to living with this crud is MINE and MINE ALONE. I am not sharing my story to suggest or persuade anyone how they approach their own battles and journey. I share this only to bring my long-time friends here at Healingwell up to date and to give a different perspective on how I am living life fully with this farkin’ disease.

My best to all of you,

Sonny

Post Edited (Sonny3) : 3/7/2018 3:22:00 PM (GMT-7)


InTheShop
Veteran Member


Date Joined Jan 2012
Total Posts : 8618
   Posted 3/7/2018 4:30 PM (GMT -6)   
Great to hear from and with so much detail.

It's just tragic that the medical community has its hands tie in this line of research.

Keep it going.
Peace,
Andrew
I'll be in the shop.
Age 58, 52 at DX
PSA:
4.2 10/11, 1.9 6/12, 1.2 12/12, 1.0 5/13, .6 11/13,
.7 5/14, .5 10/14, .5 4/15, .3 10/15, .3 4/16, .4 10/16, .4 5/17, .3 10/17
G 3+4
Stage T1C
2 out of 14 cores positive
Treatment IGRT - 2/2012
My latest blog post

tulmkr
Regular Member


Date Joined Sep 2014
Total Posts : 29
   Posted 3/7/2018 4:39 PM (GMT -6)   
Way to go, being off traditional treatments and it effects must be a liberating. May I ask what your preferred method of delivery is, and if one offers a more profound value than another? I am currently undetectable, but do have some severe side effects that cant seemed to be resolved except by the means you utilize. I have tried the non enlightening cannibanoids, and they did help provide a more restful sleep, but did not reduce pain at all. The enlightening type in vape form worked moderately well for pain, but usually just took the edge off. Edibles are a bit pricey, but work very well for my leg pain. The best by far is the old fashioned bong, but due to the stigma, the family isnt too keen, so it my little secret.

I plan on sharing this post with my wife, and family in the hopes they will see that there are real benefits to non tradition treatments. Hopefully our fearless will prove to us that they are indeed fearless, and lift the restrictions of research in this area.

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 3/7/2018 4:59 PM (GMT -6)   
Andrew, good to hear from you. While I miss being here more often, I also try to put this crud on the back burner till I need to address it. I just give it the due diligence when it is required.

tulmkr, in the beginning I ordered the non thc oils from Colorado. In the beginning I tried using it primarily for sleep. I have had the worst issues with sleep since 2006. Then I began to do the research and decided I would give it a real try for the year. Additionally, while on the TAK 700 I developed the side effects of anorexia. I find it very hard to want to eat most of the time. This seems to help also in that department. I am also an old fashion kind of guy in its use. The whole family knows about my use and has no issues with it. I dose late at night just before going to bed. The rest of the time I am just too busy to mess with it. They just say what ever keeps me around the longest is fine with them. Of course we are talking about the adults here. The little grand kids have no knowledge.

best to you both,
Sonny

Post Edited (Sonny3) : 3/7/2018 4:03:24 PM (GMT-7)


NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 3/7/2018 5:15 PM (GMT -6)   
That must have been about the time you forgot your HW password.

Just kidding. Nice to hear from you.

-Norml

Pratoman
Veteran Member


Date Joined Nov 2012
Total Posts : 5542
   Posted 3/7/2018 5:29 PM (GMT -6)   
Sonny, you are one of the strongest guys i've met through this entire PC experience. And you are also a good friend to everyone here. Not only those like me who have been fortunate enough to meet you face to face, but to those that have not had that privilege. You show a caring attitude towards everyone here.

I truly hope you enjoy this treatment free year and many more after it. Nobody deserves it more than you. Thank you for posting and sharing this with everyone

Edit: If its easily available, i would really like to see some links to the research you've done on medical herbs. You can email it to me if its best. If you have it handy and its not too much trouble. I'm very curious.
And not at all surprised by your Drs remarks regarding medical establishment holding back on it.

Wilderness
Regular Member


Date Joined Feb 2015
Total Posts : 303
   Posted 3/7/2018 5:46 PM (GMT -6)   
Thank you Sonny. I admire the way you are taking on life and cancer. I hope to follow a similar path if/when I face progression. Great Onco!

Best to you -
Wilderness.
8/14 DRE: notch
9/14 DX 2/12: 5% 3+4 & <5% 3+3
12/14 ORP Dr. McGovern MGH pT3a 47g 15% Gl 3+4 in rpq focally & l. extensively; "established, extensive EPE" PNI+ SM- SV-
2/16 diet upgrade
PSA 8/14 2.38; 12/14 2.90; 1/15 .01; 3/15 .02; 5/15 .01; 8/15 .02; 10/15 .01; 1/16 .03; 2/16 .06; 3/16 .04; 6/16 .03; 7/16 <.014; 11/16 .03; 1/17 .06; 3/17 .03; 6/17 .03; 8/17 <.014; 11/17 <.014; 2/18 <.014

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 3/7/2018 6:02 PM (GMT -6)   
Prato, thanks for the kind words. I just sent you an email with links to just a few of the websites that I found and CBDs and their effect on Pca.

Wilderness, thanks for the support. And yes my Onco may not be one of those guys that seem to have National Notoriety, but I have faith and trust in him and that is what counts.

Sonny

Jerry L.
Veteran Member


Date Joined Feb 2010
Total Posts : 3057
   Posted 3/7/2018 7:04 PM (GMT -6)   
Sonny,

Great to hear from you...thanks for the update...love the strategy...

Jerry L.
11/09 Dx at Age 44 ----- 4.03
12/09 DaVinci Surgery,t3b,g9 <.05
2/10 Adj. Radiation ----------- <.05
3/11 PSA Rise/Scans/Spot ---- .09
on Pelvic Bone
4/11 HT/XGEVA/Spot Radiation -- .06
2011-2012: ADT3: 15 months
2013-2015: ADT3 VACATION #1: 36 Months
2016: Spot on Rib; .07; ADT3; Spot Rad
2017-?: ADT3 VACATION #2:

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5828
   Posted 3/7/2018 7:17 PM (GMT -6)   
good on ya...
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...

Grinnell86
Regular Member


Date Joined Feb 2010
Total Posts : 265
   Posted 3/7/2018 7:18 PM (GMT -6)   
Way to go, Sonny! I think we discussed this in Rochester several years ago. Glad to see it is working for you. I hope to see you next month!

Paul
Age 53
PSA 10/09=4.60, Biopsy 12/09
Left side benign, Rt side 3of 4 pos, 70%
Gleason 3+4
DaVinci 2/16/10,
Gleason 4+3
Pos marg
T2C PNX PMX
PSA 5/10 <.05, 8/10 .12, 9/10 .12, 12/10 .16, 1/11 .15,
02/11 .17, 03//11 .19
SRT 4/11
PSA 7/11 .16, 10/11 .14, 2/12 =.081, 6/12=.034, 12/12=.013, 6/13=.015. 1/14=.017, 7/14=.029, 1/15=.032, 1/16=.044, 7/16=.049, 1/17=.045, 7/17=.063, 11/17=.051

Tall Allen
Elite Member


Date Joined Jul 2012
Total Posts : 10121
   Posted 3/7/2018 7:24 PM (GMT -6)   
Sonny-

I'm delighted to hear from you, especially with such a good report. It looks like you were able to really knock the crap out of it, and your personalized therapy may be keeping it down.
Allen - not an MD
•PSA=7.3, prostate volume=55cc, 8/17 cores G6 5-35% involvement
SBRT 9 yr onc. resultsSBRT 7 yr QOL results
•treated 10/2010 at age 57 at UCLA,PSA now: 0.1,no lasting urinary, rectal or sexual SEs
my PC blog

60Michael
Veteran Member


Date Joined Jan 2009
Total Posts : 2222
   Posted 3/7/2018 8:52 PM (GMT -6)   
Thanks for such a detailed post Sonny. I have heard that a Comany with the stock symbol GWPH is conducting studies of Marijuana and it’s effect on Cancer. I will double check that symbol. A friend who lives nearby has had PCA for more years than me, and his PSA has reached as high as 1,000,but he will pass away from something other than PCA.

Good hearing about your journey Sonny and you are a man who lives life well.
Michael
Dx with PCA 12/08 2 out of 12 cores positive 4.5 psa
59 yo when diagnosed, 61 yo 2010
Robotic surgery 5/09
Gleason upgraded to 3+5, volume less than
started ED tx 7/17, slow go
Post op dx of neuropathy
T2C left lateral and left posterior margins involved
3 months psa.01, 6 month psa.4
Started IMRT Jan. 2010 72gys
7mpost SRT PSA.27 12 m.19, 21 m.27,May 2013 PSA 27 Mets,began HT, Ztyiga 3/10/15

garyi
Veteran Member


Date Joined Jun 2017
Total Posts : 799
   Posted 3/7/2018 8:56 PM (GMT -6)   
Excellent story Sonny. Glad it's working so well for you.

Physicians have too much to lose, to go off the standards of care. Stifles discovery, IMO.

After Prato reads the material you sent him, I expect a new, more mellow, relaxed Ken to appear. I hope you included the name and contract info for your oncologist, if not for him, then for me.

smilewinkgrin

Michael_T
Veteran Member


Date Joined Sep 2012
Total Posts : 2811
   Posted 3/7/2018 10:32 PM (GMT -6)   
I just want to say that I appreciate your perspective. (I also appreciate your warnings, although I'm not sure if they're needed nowadays.) Most important, I wish you continued success and happiness!
Age 57, Diagnosed at 51
PSA 9.6, Gleason: 9 (5+4), three 7s (3+4)
Chose triple play of HDR brachy, IMRT and HT (Casodex, Lupron and Zytiga)
Completed HT (18 months) in April 2014
9/17: PSA = 0.1

Worried Guy
Veteran Member


Date Joined Jul 2009
Total Posts : 3732
   Posted 3/8/2018 10:14 AM (GMT -6)   
Sonny

See? One again you grabbed the bull by the horns and just did it! This is a perfect example of why you are our hero! You get so much out of life!

We have learned (and continue to learn) so much from you and your experiences! It makes me smile just thinking about! Thank you!

I hope we see you in a few weeks!

Jeff
Age: 65, Mar. 42 yrs, 56 dx, PSA: 4/09 17.8, 6/09 23.2
Biop.: 6/09 Pos 7/12, 20-70%, G4+3; Bone, CT Neg
DaVin RP: 7/09, U of Roch Med Ctr
Path Rpt: G3+4, pT3aNOMx; 56g, Tumor 2.5x1.8 cm both lobes and apex
EPE, PNI extensive; Sem Ves, Vas def clear, Lymph 0/13
AdVan Sling 1/11
ED total
PSA: 10/09 .04, 7/10 <0.01, 7/11 <0.01, 1/12 <0.02, 4/13 <0.02, 3/14 <0.02, 4/15 <0.02, 5/16 <0.02, 6/17 <0.02!

Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 3/8/2018 10:17 AM (GMT -6)   
Thank you one and all for the words of support. To me that is what this place is all about. And thank you all for taking my post in the spirit that it was written.

Michael T, I haven't been here much lately and I appreciate your comment about the warnings. I guess that this forum has changed a tad in my absence. Not too long ago there was sure to be a crap storm if someone posted such an out of the norm way of approaching their treatment plan. I truly appreciate that my post did not start one of those.

tennisplayer
Regular Member


Date Joined Nov 2016
Total Posts : 417
   Posted 3/8/2018 10:37 AM (GMT -6)   
Sonny- You've written an inspiring report. It shows me what a thoughtful, determined person you must be. I wish you continued success in managing your disease.
Age at diagnosis-66 Diagnosed 6/16
RALP 10/16 at U of Chicago, Dr. Shalhav. Experienced internal bleeding post op requiring transfusion of 2 units.
Pathology Gleason 3+4=7, tumor volume 15% Margins negative except for one focal margin, .1mm
pT2c,N0,MX,R1
PSA @ 6 wks <0.02;16 wks <0.02; 5/17 <0.02; 10/17 <0.02
My storywww.healingwell.com/community/default.aspx?f=35&m=3777359

NKinney
Veteran Member


Date Joined Oct 2013
Total Posts : 1159
   Posted 3/8/2018 11:04 AM (GMT -6)   
There is a missing piece of information from your narrative which you skipped that is a head-scratcher, Sonny.

You report "conducting" your own trial, using medical weed for cancer relief available in Florida since 2017. Just this past Monday you told your doctor about this for the first time, which appeared to catch him by surprise. (Did I read that right?) How'd you get the Registry Card which allows you to purchase from a Florida authorized dispensary without the cancer doctor's direct involvement?

Maybe I misunderstand the new Florida law. Can you please clarify? Thanks in advance. (Note: if your approach was outside of the means allowed by the new law, then a "no reply" will suffice to address the question...just pretend you didn't see this one so that we all stay safely within the rules here)

Post Edited (NKinney) : 3/8/2018 11:21:01 AM (GMT-7)


BillyBob@388
Veteran Member


Date Joined Mar 2014
Total Posts : 2904
   Posted 3/8/2018 12:09 PM (GMT -6)   
Sonny,
Absolutely fascinating, thank you so much for your report. I will certainly be keeping your clinical trial of 1 in mind if more is needed in the future!


garyi said...
Excellent story Sonny. Glad it's working so well for you.

Physicians have too much to lose, to go off the standards of care. Stifles discovery, IMO.

After Prato reads the material you sent him, I expect a new, more mellow, relaxed Ken to appear. I hope you included the name and contract info for your oncologist, if not for him, then for me.

smilewinkgrin


That is so hilarious, and so true!
PSA 10.9 ~112013
Bx on 112013 at age ~65yrs, with 5 of 12 pos with one G9(5+4), 1 PNI, T2B.
RALP with lymph nodes at Vanderbilt 021914. (nodes clear, SV+, G9 down graded to 4+5, cut wide, but 1 tiny foci right at the edge of margin ) Pros. 106.7 gms!
At 15 months, not wearing a pad most days, mostly dry
PSA <.01 on 6/14 and all until 9/15 = .01, still .01 9/16, .02 on 3/17,6/17,10/17

Progressing
Regular Member


Date Joined Aug 2017
Total Posts : 219
   Posted 3/8/2018 12:11 PM (GMT -6)   
Sonny3, good on you, your doctor, and the posters here.

Will discuss with my RO when I see him. idea

Post Edited (Progressing) : 3/9/2018 6:40:29 AM (GMT-7)


Sonny3
Veteran Member


Date Joined Aug 2009
Total Posts : 2447
   Posted 3/8/2018 12:23 PM (GMT -6)   
NKinney, feel free to email me direct.

logoslidat
Veteran Member


Date Joined Sep 2009
Total Posts : 5828
   Posted 3/8/2018 12:36 PM (GMT -6)   
I di not see sonny email request to NKinney so will delete my above
gleason 9 contained stopped psa testing jan 2015 with two consecutive psa's a year apart at 0.15
surgery 10/09 only treatment...eyes wide open...no sand...gonna live til I die...not the reverse forgive my virtues as well as my sins...

Jazzman1
Veteran Member


Date Joined Sep 2010
Total Posts : 1160
   Posted 3/8/2018 8:55 PM (GMT -6)   
You're a good man, Sonny. It's great to see a detailed update from you. Wishing you the best with your "clinical trial."

Jonathan

Gear
Regular Member


Date Joined Oct 2016
Total Posts : 241
   Posted 3/8/2018 9:30 PM (GMT -6)   
Wish the best... I don't think "it's out of the box"
DX 9/2011 @ age 50, PSA: 2.1, 10/6/2011 RP Da-Vinci
4-3 Gleason, PT2C, -SV, -Mar,+PI, NX... <.02 first 4+ years
Start SRT@ PSA 0.25, 38 Sessions-68.4 Gy, Finished 02/1/17
PSA: 5/17-.12, 8/17-.031, 1/18~.01,

Post Edited (Gear) : 3/9/2018 5:25:37 AM (GMT-7)

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