Hi-Risk/Recurrent/Advanced PCa Video Chat Support – Men & Caregivers Recording, May 03, 2021
Editor’s Pick: An 80 yr old man tolerating docetaxel is an inspiration to all. Later on, practically ,do you stop treatment to allow PSA rise for screening purposes? (rd)
Topics Discussed
80+ yr old man undergoes chemo, but rash stops it; reluctant patient faces recurrence; Grade 4 Radiation Cystitis; more recurrence w. pelvic girdle RT; NGS reveals MSI-H; getting an Axumin scan thru MSKCC; In Memory of Scott Hogan; ARV110 trial fails BRCA2 patient; swollen legs leads to coming off abi; melanoma Dx to add to PCa; continuing Tx vs allowing PSA rise to see source of recurrence; bowel and bladder maintenance during salvage RT
Chat Log \
John Ivory (Private): 5:22 PM: https://www.dignityhealth.org/ourdoctors/1699772210-russell-gollard
Carlos Huerta (to Everyone): 5:25 PM: Extravasation is when a medication gets out of the vein and under your skin.
Jake Hannam (to Everyone): 5:26 PM: Extravasation is the leakage of a fluid out of its container into the surrounding area, especially blood or blood cells from vessels. In the case of inflammation, it refers to the movement of white blood cells from the capillaries to the tissues surrounding them (leukocyte extravasation, also known as diapedesis). Extravasation injury is defined as the damage caused by the efflux of solutions from a vessel into surrounding tissue spaces during intravenous infusion. The damage can extend to involve nerves, tendons, and joints and can continue for months after the initial insult.
Bruce Bocian (to Everyone): 5:37 PM: Try lavender oil
Eileen Murphy (to Everyone): 5:37 PM: How about Sarna lotion with menthol or Aveeno products?
Bruce Bocian (to Everyone): 5:38 PM: I got the lavender oil tip from the essential oil book
Bob McHugh (to Everyone): 5:57 PM: A shrink or social worker for this guy?
Herb Geller (to Organizer(s) Only): 6:03 PM: I just searched his hospital and there are no GU oncologists
William Franklin (to Everyone): 6:27 PM: I don’t want to take up time we can use to talk to you guys so I’ll put my plug in here. If you feel like ANCAN has helped you and you’d like to say something nice about us, please hop over to greatnonprofits.org, search for ANCAN, and make a comment. We would greatly appreciate it.
Rick Davis (to Everyone): 6:31 PM: You can go ot our website and just click on Testimonials too
Bruce Bocian (to Everyone): 6:42 PM: Bill, just posted my review!
Frank Fabish (to Everyone): 7:15 PM: need to sign off. Thank you all.
Carlos Huerta (to Everyone): 7:17 PM: Dont forget the old standard. Castor Oil.
Joe Gallo (to Everyone): 7:20 PM: Senakot is brand of Sena
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 Video Chat Support – Men & Caregivers Recording, Apr 19, 2021
Editor’s Choice: Lively discussion on mental health brought on by treatment, especially in the Chat. And later on, hot & cold tumors (rd)
Topics Discussed
Recurrence 5 years after RP; recurrence after brachy + IMRT; Provenge; Caregiver discusses depression and anxiety; prostate in teh bladdernech impacts RT choice; 2nd opinion from Dr. Morgans may change treatment; Xgeva dosing; hot vs cold tumors impact immunotherapy; end of chemo in sight; Lu177 PSMA working; cyclophosphamide; HT holiday appears over
Chat Log
Bruce Bocian (Private): 5:04 PM: Wearing my new T-shirt tonight!
Rick Davis (to Bruce Bocian): 5:06 PM: I see …. nice job! Give it a plug …..
Bruce Bocian (Private): 5:06 PM: I did before you came on.
Len Sierra (to Everyone): 5:26 PM: Antonarakis and Denmeade
Jake Hannam (to Organizer(s) Only): 5:29 PM: CT and bone scan will probably be redundant if he can get the PET/CT approved
Pat Martin (to Everyone): 5:42 PM: Good night, all. See you next week
Jeff Marchi (to Everyone): 5:45 PM: no CT or bone scan
Alan Dibble (to Everyone): 5:46 PM: Alan does not wish to ask how everyone deals with the emotional aspect of this disease. He had prostate removed, radiation therapy and now on chemo, plus injections of eligard. (Cancer spread to hips and femur after 1 year after radiation).. He goes through much anxiety and depressions. He is 69 and was diagnosed at 56 years of age. He does not wish to speak. I’m getting involved on his behalf. I’m his wife of 20 years.
Jake Hannam (to Organizer(s) Only): 5:50 PM: Alan may wish to join Speaking Freely
Jake Hannam (to Everyone): 5:56 PM: Venlafaxine is used to treat depression. It may improve your mood and energy level, and may help restore your interest in daily living. Venlafaxine is known as a serotonin-norepinephrine reuptake inhibitor (SNRI).
Tad (to Everyone): 5:57 PM: venlafaxine = Effexor (er)
John Ivory (to Everyone): 5:57 PM: Many people use the brand name for venlafaxine, which is Effexor XR
Rick Davis (to Everyone): 6:00 PM: Let’s not push venlafaxine – we are not expert enough to do that! We have expertise in PCa – we don’t have expertise in mental health. And we know better how men respond to the PCa drugs.
Tad (to Everyone): 6:07 PM: Ok….. all I meant. isthat I have experience in mental health
John Ivory (to Everyone): 6:08 PM: Are you a physician or a therapist, Tad?
Tad (to Everyone): 6:08 PM: A lifetime of personal experience. Are there physicians here for prostate? I’m just offering help like others are
Rick Davis (to Everyone): 6:09 PM: an SSRI can effect one person well and not another. They may need an SNRI.
Tad (to Everyone): 6:10 PM: yep or maoi……or I had shock treatments, etc etc etc. just like there are generalities for prostate, there are generalities with mental….general places to start. Bipolar type 2 since 1988. Been in psych hospitals many times. Electric shock treatments. Every med there is. Best dr’s in the country. This cancer stuf has been. awalk in the park compared to having. alife with. a major mental illness. Haven’t been back here for over a year. Finally was able to get back here tonight…..but this makes me depressed. So I’ll leave. Have a nice night.
Dennis McGuire (Private): 6:24 PM: Hi Rick, Is Dr. Morgans leaving Northwestern ? Heard the end of that conversation. Thanks
Rick Davis (to Dennis McGuire): 6:24 PM: Yup – early July. She’s going to Dana-Farber.
Dennis McGuire (Private): 6:26 PM: Sorry to hear that. Great hire by Dana-Farber ! She is a Superstar. I remember she has a history with Dana-Farber in her earlier days
Rick Davis (to Everyone): 6:36 PM: https://www.fiercebiotech.com/research/epizyme-s-ezh2-blocker-boosts-immuno-oncology-response-prostate-cancer-models Tazverik
Vincent Wilmot (to Everyone): 6:38 PM: Thanks all. Have to jump off now. Will stay in touch.
Jake Hannam (to Everyone): 6:38 PM: Mark your calendars for what AnCan expects to be a humdinger of a webinar on Thursday, April 29 at 8 pm Eastern. Advisory Board Member and Co-Director of the Parker Institute for Cancer Immunotherapy at UCSF, Dr. Larry Fong, will answer “Will Immunotherapy Change Your Prostate Cancer Treatment?” . Register at https://bit.ly/3thuPmq to learn how Superman came to visit Larry!
Ken (to Everyone): 6:41 PM: Got to go… pilots telling me turn off electronics
Jake Hannam (to Everyone): 6:42 PM: Sorry. Can’t attach the flier. See our Facebook page: https://www.facebook.com/answercancer/photos/a.1872701729640708/2908943646016506/
Bill Franklin (to Organizer(s) Only): 6:43 PM: I’ve got to drop guys. Need to help my son finish up a little bit of homework so he can get to bed at a reasonable time. Take care all.
Jake Hannam (to Everyone): 6:58 PM: dexamethasone (1 mg/day in the evening) with cyclophosphamide (50 mg/day in the morning). Zofran
Ted Healy (to Everyone): 7:02 PM: Got to go folks, thank you all!
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
