If Medicine Doesn’t Come to you, Go to the Medicine!
You know what they say about Mohammed and the Mountain …… if the mountain will not go to Mohammed, Mohammed must go to the mountain! Well it’s often like that today with cutting edge medicine – and even not so cutting edge if you live in out of the way places like Maui, HI where our Board President, Peter Kafka, resides. It’s all part of Being Your Own Best Advocate…… (rd) PS Peter has asked me to clarify, he wrote what follows – not me. But I guess most of you can figure that out!
Back in 2014 when I was first diagnosed with advanced prostate cancer, my younger son who was 38 years old at the time was in the urologist’s office with me getting the news. As I was seated on the exam table, he was standing in the corner leafing through the booklets and pamphlets about prostate cancer while we waited for the doctor to deliver the bad news. My son, holding up a booklet exclaimed to me; “Dad, this literature is older than me!” Right away we both knew we were in the WRONG place.
Unfortunately, so many men and women reside or walk into the “wrong” place when it comes to getting access to the most up to date technology in terms of treatment or diagnostic tools. Little did I know back then. I lived at that time under the illusion that the “Doctor” knew everything and would of course be up to date with the latest and greatest. Not so, as I quickly learned.
One of the great values that I have found in participating regularly in our AnCan prostate cancer support groups is the experiential reporting on all the new cutting-edge treatments and diagnostic tools that are emerging and available. Recently one of our number took advantage of the new technology of Micro Ultrasound to guide a biopsy. Apparently, this is found to be even better than the 3T multi-parametric MRI in determining just where to poke the needle and take a tissue sample, leading to a far more accurate diagnosis. It can detect small, but significant lesions within the prostate that might otherwise be missed.
The rub however, like any new advancement is that not every facility or doctor will be in the “know” or have access to such tools or treatments. Don’t I know this well, living here on the Island of Maui in the middle of the Pacific Ocean. The lesson for all of us is that we should carry a business card stating; “Have Suspicion Will Travel”. Please don’t wait for technology to come to your doorstep or for enlightenment to come to your doctor. Your life is way too important to me.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 13, 2021
Editor’s Choice : We learn about a partial removal of the prostate for urinary reason – a simple prostatectomy; and how this can complicate identifying whether PCa has spread. (rd)
Topics Discussed
Hawaii KP patient needs better follow-up on recurrence; a partial removal of the prostate confuses what’s going on; 80 yr man wonders how to handle recurrence; Lu177 PSMA trial experience; & … I130 PSMA trial experience together with jaw issues; cyclophosphamide oral chemo; the AUS works!! (artificial urinary sphincter); PSA still rising on ARV110 trial; experience with return of testosterone; follow-up after 4+5 RP with a positive node.
Chat Log
Rick Davis (to Everyone): 3:03 PM: OMG …… Don Price – the Mouse returns!! Bob Bordiga also coming out the woodwork
Don Price (to Everyone): 3:06 PM: Si…sorry to have been away so long.
John Ivory (to Everyone): 3:45 PM: https://cancer.osu.edu/find-a-doctor/search-physician-directory/anish-b-parikh Pat Martin (to Everyone): 3:46 PM: Any biopsies?
Jake Hannam (to Everyone): 3:51 PM: thanks john
Pat Martin (to Everyone): 3:53 PM: What Gleason score?
John Ivory (to Everyone): 3:53 PM: he said 4+4
Pat Martin (to Everyone): 3:54 PM: Thanks. I missed that
W Klass Toronto (to Everyone): 3:56 PM: Need to leave. Thanks for the invite.
Pat Martin (to Everyone): 3:57 PM: I was looking forward to hearing from you.
Jake Hannam (to Everyone): 3:57 PM: thanks for joining us. Come back soon!
Herb Geller (to Organizer(s) Only): 4:03 PM: I just got an e-mail from Collins at Gt saying my PSA yesterday was 1.4, and that was after I did stationary bicycle. The previous GT number was 1.8!
Pat Martin (to Everyone): 4:08 PM: heading out. See all next week.
John Ivory (to Everyone): 4:16 PM: I’ve go to run to another meeting. Good to see everyone!
Russ (to Everyone): 4:25 PM: Heading out as well. Have a good night!
Bob (to Everyone): 4:30 PM: Is an axumin scan the same as a PSMA PET with Galium 68?
Jake Hannam (to Everyone): 4:30 PM: oral chemotherapy drug called cyclophosphamide (Cytoxan)
Herb Geller (to Organizer(s) Only): 4:30 PM: No, it uses a different tracer from PSMA. Axumin uses a different tracer
Len Sierra (to Everyone): 4:31 PM: Bob, no, PSMA-PET is more sensitive than Axumin
Rick Davis (to Everyone): 4:36 PM: cyclophosphamide https://pubmed.ncbi.nlm.nih.gov/31399784/
Bob (to Everyone): 4:40 PM: Does anyone have experience with BiPolar ADT? If so, did it work?
Rick Davis (to Everyone): 4:41 PM: Bob – we have a webinar on BAT … search for Denmeade on our website https://ancan.org
Rick Davis (to Everyone): 4:42 PM: Anecdotally we only see short term results from BAT, but JH is reporting better results. Some of our guys have had more conversations with JH. This is a longer discussion than the chat window.
Bob (to Everyone): 4:43 PM: Thank you everyone. I have to leave due to a 1:45appointment which was previously scheduled.
Jake Hannam (to Everyone): 4:44 PM: ARV-110
Jeff Marchi (Private): 4:48 PM: you asked whether Santa Clara is where the medoc is located. when I had my prostate removed I had to drive from San Francisco to San Jose. that is where the surgeons are located. must be where medoc is located
Rick Davis (to Jeff Marchi): 4:50 PM: No he’s mid-Peninsula
Herb Geller (to Everyone): 5:16 PM: I gotta go. See you on Monday
Len Sierra (to Everyone): 5:23 PM: Goodnight, fellas. See you next week.
Peter Kafka, our Board Chair and Lead Moderator for several of our video-chat virtual support groups, poignantly reflects this week on the meaning of 7 years living with his prostate cancer. (rd)
One subject that comes up fairly often in our prostate cancer support calls is “fatigue”. Usually in the context of dealing with physical fatigue as a side effect of various treatment drugs. But I am thinking today about a different level of fatigue that affects us mentally and emotionally. We hear a lot about this in regards to the ongoing Covid-19 pandemic. A year or so into it and people are crying out, “Enough already!”. But I would guess that many of you feel the same sentiment regarding your ongoing experience with a prostate cancer diagnosis.
I have reached my 7-year anniversary since my official diagnosis of prostate cancer. What is it about the number seven? Yes, it has some kind of man-made spiritual significance. The seven colors of the rainbow, the seven days of the week, Snow White and the Seven Dwarfs and of course the Seven-year Itch. But as I (celebrate?) this seven-year anniversary of dealing with my prostate cancer I hear myself crying out, “Enough Already!”. Fatigue is setting in.
I have done my best to look at this disease from a wide variety of angles. The friendships I have made with many of you. The increased understanding of the dynamics of prostate cancer among an ever-increasing body of men and women. The empowerment of taking on the job of being one’s own best advocate. But in honesty, prostate cancer and all the accompanying side effects of the variety of treatment modalities that I have, and continue to experience, bring on a good deal of mental and emotional fatigue.
I don’t believe that medical science graphs this fatigue factor. We read a lot about “overall survival – OS” or “progression free survival – PFS”. I guess the category of “Quality of Life” might come closest to what I am talking about, but it doesn’t quite capture the essence. I suspect that any of you who have been on this journey for any length of time know what I am talking about. I don’t have an answer, and I am certainly not selling any kind of snake oil for treatment. I know in my heart and mind that this bump in the road will pass and I will move forward. I always do.
Hi-Risk/Recurrent/Advanced PCa Virtual Support – Men & Caregivers Recording, Apr 5, 2021
Editor’s PickShould docs make overall survival predictions – it scares a newly diagnosed man, while an old hand laughs! (rd)
Topics Discussed
High-risk PCa treatment decision; recurrence – beware of overall survival preductions; durable remission and NED; experiencing spinal collapse; Spot Radiation; scanning for recurrence; ARV110 trial experience; can you add a drug to your trial; lymphedema issues; CBC questions; picking up rib lesions; 5 yrs out when the doc didn’t give you 5; record your medical meetings; estrogen patch for hot flashes; more chemo …. & more & more; gabapentin for neuropathy; PBRT vs IMRT; going off ADT to get a scan result; …. & lots of nutrition discussed in the Chat Log!
Chat Log
Jeremy (to Everyone): 5:21 PM: https://www.fda.gov/news-events/press-announcements/fda-approves-first-psma-targeted-pet-imaging-drug-men-prostate-cancer
Ken (to Everyone): 5:24 PM: hey jake…. chemo #15 this past friday so dealing with the side effects. alk phos continued down 10 points and psa down 2
Ted Healy (to Everyone): 5:46 PM: record your meetings
Jake Hannam (to Everyone): 5:47 PM: Yes we do, Ted (this and several others)
Ted Healy (to Everyone): 5:48 PM: no, meetings with the dr
John I (to Everyone): 5:52 PM: Wow, Sylvester, that was inspirational!!!
Len Sierra (to Everyone): 5:53 PM: I agree with John – we need to hear more from Sylvester on these calls!
Jake Hannam (to Everyone): 6:26 PM: Radium 223 negates future use of lutetium?
Jake Hannam (to Everyone): 6:27 PM: Is that true?
Herb Geller (to Everyone): 6:36 PM: I don’t know Ra-223 negates anything but it doesn’t seem that promising compared to other therapies.
Rick Davis (to Everyone): 6:38 PM: radionuclide trials usually prevent particpation if you have already taken a radionuclide. check the Lu177 trials
Carl Forman (to Everyone): 6:52 PM: Thanks so much to Scott Hogan for being able to participate here tonight. Hope to see you here again. Best wishes.
Ted Healy (to Everyone): 7:06 PM: I’m sorry, have to go. thank you all!
Vanita Gaglani (to Everyone): 7:10 PM: walnuts, greens,soaked fenugreek seeds ( 1 tsp per day) real licorice roots, sunflower seeds, spearmint tea all help with hot flashes. Len Fenugreek seeds can be bought in any Indian grocery store.If you have an Indian grocery store near you they have the greens called Methi. Some of the anti carcinogenic ,anti inflammatory natural products include Turmeric, cummin seeds, cinnamon.
eric (to Everyone): 7:16 PM: is this for anti inflammatory
Carlos Huerta (to Everyone): 7:19 PM: Alpha Lipoic Acid
Vanita Gaglani (to Everyone): 7:19 PM: yes. But get real turmeric powder , not capsules.1/4 tsp each you can put all in mik and drink or in tea, warm water. I am happy to answer any questions. hello@vanitasrehab.com. These are natural anti inflammatories.
Rick Davis (to Everyone): 7:22 PM: IMRT vs PBRT side effects http://prostatecancerinfolink.net/2012/02/01/first-directly-comparative-data-question-safety-of-pbrt-vs-imrt/
Carlos Huerta (to Everyone): 7:23 PM: Get a PSMA PET to target the protons
Vanita Gaglani (to Everyone): 7:24 PM: For all treatments try to keep the bladder filled 8-10 oz of urine.
Rick Davis (to Everyone): 7:24 PM: Not necessarily true Vanita – as we heard earlier
Vanita Gaglani (to Everyone): 7:24 PM: we do not need 32 oz of fluid because most men cannot hold it.or women.
John I (to Everyone): 7:26 PM: I needed a full bladder, but I believe it was 24 ounces (though I’m small)
Vanita Gaglani (to Everyone): 7:28 PM: 24 oz is difficult to hold
John I (to Everyone): 7:29 PM: They timed it–drank it 20 min before treatment & tretament was quick.It was hard to hold only if the machine went down & I had to wait a few extra minutes
Vanita Gaglani (to Everyone): 7:30 PM: if anyone can tolerate plain yoghurt eating that helps a lot too Agreed John.
Bruce Bocian (to Everyone): 7:39 PM: please type those letters of that stanford test in the chat box, not sure I heard it correct
Rick Davis (to Everyone): 7:40 PM: 17F DCFPyl
Peter Kafka (to Everyone): 7:40 PM: 17F DCF-PYL PSMA PET CT
John I (to Everyone): 7:42 PM: Great session, thanks Rick
Michele was profiled by our friends at Patient Power for all the incredible work she has done, and is doing for the entire blood cancer community. We love her work on raising awareness for clinical trials.
One of the most important things to Michele was helping people understand how clinical trials work, like the phase II trial she participated in, emphasizing that patients “are getting tomorrow’s treatment today,” she said. Clinical trials are at the forefront of treatment options these days, offering state-of-the-art treatments. In cancer care, it is not placebo versus real treatment. Michele’s trial was a drug combination trial of two different treatment protocols simultaneously
Learn why Wonder Woman inspires her, advocating from the treatment chair, and so much more by clicking here to read the full article.
