Covid19 …….. on Maui …… hitting cancer patients!!!

Covid19 …….. on Maui …… hitting cancer patients!!!

One of the video chat, virtual groups our factotum Board Chair, Peter Kafka, moderates, is a men-only, pan-cancer meeting on the island of Maui (& Malakai), where he lives fulltime. His recent reminder for tonight’s meeting makes worrisome reading and includes helpful advice …… 

Aloha! ……. once again our local hospital is in the news due to very recent incidents of Covid-19 infections among some patients and staff. I don’t mention this to cause alarm, but rather to caution those of us who must out of necessity use the facilities of the hospital for treatment.  I found myself at the hospital for the administration of an injection on the very morning when this “outbreak” was first reported last week.  Of course it made me a little uncomfortable, but what to do?  Those of us with cancer, and particularly those of us undergoing treatment find ourselves in the “most vulnerable” category when it comes to exposure to Covid-19.  I suspect that many of you are paying particular attention to ways that  you can stay safe.  It turns out that there might be some things we can do.

When I was undergoing chemo infusions every three weeks at the Cancer Center I would don a disposable tyvek painter’s suit that I picked up inexpensively at the hardware store.  I would step into this suit in the hospital parking lot and when I was done with my 4 hour protocol I would remove the suit and toss it.  This would save me the hassle of thinking I needed to change out of my clothes right away and wash them.  Of course it might not have done any good, but it did give me peace of mind that I was taking some kind of additional protection other than wearing a mask and disposable gloves.

Another thing that I read about recently is the benefit of an annual flu vaccine.  I think there has been a study or two about the lower incidence of more serious incidence, side effects and death among some European populations who stayed up to date with their annual flu vaccines.  I know that Covid-19 is a different beast than the annual flu, but there might be some benefit to keeping up protection to the flu that strengthens our immune system in regards to Covid-19.  Don’t quote me on this theory, but since my cancer diagnosis some 6 + years ago I have made it a point to keep up with annual flu shots and pneumonia vaccines since I knew my immune system was compromised.  You may have noticed that all the drug stores and supermarkets are now advertising that the “walk in” flu shots are available for this year.  No need to see a doctor or clinic.

One of the ways that we tend to let our guard down is by thinking that there is no one that we know of that has caught Covid-19, been sick or in the worst case scenario has died from this disease.  I know I have caught myself getting a little careless because of this way of thinking.  But I remind myself that one of our regular participants on these bi-monthly calls got caught up in the first Maui Memorial Hospital outbreak last March when he unwittingly had to go to the hospital for treatment related to his cancer diagnosis.  He did contract the virus and subsequently died very shortly afterwards.

So, again I am not telling you this to cause alarm.  Just take some extra precautions.  I am certainly not saying you should stay  away  from doctors or the hospital.  I, myself have to utilize the hospital facilities several times a month and also get blood drawn at a local lab quite frequently.  I am not going to skip out on my cancer treatment protocol.  But I am going to take whatever steps I can to protect myself.

None of us need feel like we are alone on this journey!   Remember that Information is Power and the more information we share about our experience – the more powerful we are and we no longer feel like victims of our circumstance but masters of them instead.   

Be Well, Stay Strong and ENJOY!

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 17, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 17, 2020

 

Editor’s Pick: Even amongst the best GU med oncs, some work with you and some do not. Hear how one makes it tough to access darolutamide (Nubeqa) while another does not.

Topic Discussed

Handling transition after intial treatment on RT + ADT; recurrence after RP 7 yrs ago; locating a PSMA scan; partial ADT holiday; using lighter exercise to fight fatigue; enzalutamide crippling – access darolutamide; staus of NHI PSMA trial; don’t fall for questionable trials; what next after PARP?; incontinence no more; SBRT salvage radiation; hernia experiences

Chat Log

Ron Bucher (to Everyone): 5:18 PM: I attended advanced groups before I became an advanced patient, and I’m glad I did.

Herbert Geller (to Everyone): 5:56 PM: https://www.uclahealth.org/urology/iuo/an-experimental-imaging-scan

Herbert Geller (to Everyone): 5:59 PM: Nat Rev Urol . 2016 Apr;13(4):226-35. doi: 10.1038/nrurol.2016.26. Epub 2016 Feb 23. Current use of PSMA-PET in prostate cancer management Tobias Maurer 1, Matthias Eiber 2, Markus Schwaiger 2, Jürgen E Gschwend 1 Affiliations expand PMID: 26902337 DOI: 10.1038/nrurol.2016.26

Len Sierra (to Everyone): 6:00 PM: PSMA as therapy: https://www.prostatecancer.news/

Jeremy (to Everyone): 6:16 PM: Master Ming Tong Gu https://www.youtube.com/watch?v=Oj0ewBvr6zM&list=PLnQPg9ef3v52NHuQ1WIO8yjN-2yqpqIcs&index=13&t=4s

Len Sierra (to Everyone): 6:18 PM: You have to go to: smile.amazon.com

Russell Smith (to Everyone): 6:24 PM: Just signed up on Smile.amazon.com

Our Blood Cancer Moderator is doubly in the news

Our Blood Cancer Moderator is doubly in the news

Kenny Capps is a pretty remarkable individual … a runner his whole life, he was diagnosed with Multiple Myeloma in 2015. Only in his mid-40’s, Kenny was much concerned about Quality of Life during treatment. much like AnCan’s Founder, Rick Davis, Kenny returned to endurance exercise soon after the bone marrow transplants. In 2018, he ran the 1125 miles N. Carolina Mountain to Sea Trail in 54 days.

Kenny has now partnered with AnCan to establish our Blood Cancer Virtual Support Group with his non-profit, Throwing Bones.  Throwing Bones is dedicated to improving quaity of life for people living with blood cancers through sponsoring healthy and active lifestyles. It recently launched an educational webinar series on Exrecise & Cancer, that you can hear at https://throwing-bones.org/cancer-active-education/ .

Just a few days later, Kenny recorded an intereview with Eshter Schorr, Patient Power Co-founder. While that has not yet been published, it is coming soon on http://www.patientpower.info/ I, for one, can’t wait!

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 3, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 3, 2020

 

Editor’s Pick: We visit with the radiation bump twice this week …. and hear about treatment success!

Topics Discussed

Drug costs; renal lesions; beware the radation bump!; anemia & edema from chemo; 3 yrs of HT alone brings success; Cipro warnings; PARP-I’s and PCa; PSMA scan availability; hot flash remedies; PSA rises post brachy+IMRT+HT

Chat Log

scott (to Everyone): 5:14 PM: does anyone read notes in chat window?

Len (to Everyone): 5:16 PM: Yes, most of us do, Scott.

Carl Forman (to Everyone): 5:23 PM: Oct 15 – Dec 7 is Medicare open enrollment period, where you can change your drug plan for 2021. Go to Medicare.gov to do your research for the right plan.

Len (to Everyone): 5:24 PM: From Dr. Russell Szmulewitz, (U Chicago) director of the clinical trial showing equivalent effectiveness of Zytiga with food at ¼ the dose with a low fat meal.  “Abiraterone, approved in 2011 for the treatment of metastatic prostate cancer, has a “food effect” that is greater than any other marketed drug. The amount of abiraterone that gets absorbed and enters the blood stream can be multiplied four or five times if the drug is swallowed with a low-fat meal (7 percent fat, about 300 calories). That can increase to 10 times with a high-fat meal (57 percent fat, 825 calories).”

Herbert Geller (to Everyone): 5:25 PM: Low-Dose Abiraterone in Metastatic Prostate Cancer: Is It Practice Changing? Facts and Facets. Patel A, Tannock IF, Srivastava P, Biswas B, Gupta VG, Batra A, Bhethanabhotla S, Pramanik R, Mahindru S, Tilak T, Das CK, Mehta P. JCO Glob Oncol. 2020 Mar;6:382-386. doi: 10.1200/JGO.19.00341. PMID: 32125899 Free PMC article.

Len (to Everyone): 5:32 PM: Dear Len Sierra, It is our pleasure to inform you that you have been approved for 2020 participation in the Prostate Cancer Copay Assistance Program. This allows you to receive assistance through 12/31/2020. If you have any questions regarding this notification, please contact a Patient Advocate at (855) 318-3298 Monday through Friday, from 9 a.m. – 6 p.m. ET

scott (to Everyone): 5:50 PM: gotta go to meet the teacher night….best to everyone

Russ Smith (to Everyone): 5:58 PM: Good night all, I have a test to complete.

Len (to Everyone): 6:04 PM: macrodantin

Jake Hannam (to Everyone): 6:06 PM: cipro black box warning: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2483892/

Jake Hannam (to Everyone): 6:06 PM: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2483892/

Peter Kafka (to Everyone): 6:18 PM: It is the psa doubling time that is the trouble indicator Anything under 3-months is the Warning Sign. Even at low numbers

Peter Kafka (to Everyone): 6:22 PM: I was low at those low #’s and the PSMA scan showed me where the action was.

Len (to Everyone): 6:31 PM: Contact: Yolanda McKinney, R.N.(240) 760-6095 ymckinney@mail.nih.gov 10 Center Drive Bldg10/B3B81 Bethesda, MD 20892

Len (to Everyone): 6:37 PM: PSMA scans changing clinical practice: https://www.ascopost.com/issues/march-25-2020/psma-petct-may-have-major-impact-on-treatment-of-patients-with-prostate-cancer/

Peter Kafka (to Presenter Only): 7:06 PM: Does Geoff have a med onc at UCSF. He should be seeing one.

Peter Kafka (to Presenter Only): 7:08 PM: And at least 2-month psa’s

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – Aug 3, 2020

Hi-Risk/Recurrent/Advanced PCa Men & Caregivers Recording – July 6, 2020

 

(Editor’s Note: What a meeting ….. 26 particpants with SIX (6) new men; 2 under 60 ….. in particular, catch John G and Doug M.)

Topics Discussed

8 months of treatment and docs say no more can be done!!; de novo penile metastasis; recurrent PCa in younger man; disease returns after 10 years!; de novo Mx Dx for scientist at NIH; HT side effects; atonic (non-contracting) bladder; intimacy references; weekly docetaxel regime; metformin recall

Chat Log

Len (to Everyone): 5:10 PM: www.ancan.org

Peter Kafka (to Organizer(s) Only): 5:22 PM: Micro Satelite Instability

Len (to Everyone): 5:29 PM: Genitourinary Oncologist

Peter Kafka (to Organizer(s) Only): 5:33 PM: Sir – Spheres for Liver Cancer mets

joed2: 5:34 PM: Microspheres for liver lesions

Jake Hannam (to Everyone): 5:38 PM: rd@ancan.org

Ancan – Rick (to Everyone): 6:12 PM: clinicaltrials.gov

Russ Smith (to Everyone): 6:34 PM: Under-60 Advanced Prostate Cancer July 9 @ 7:00 pm – 8:30 pm EDT |Recurring Event (See all) GoTo Meeting – Barniskis Room      Back in mid-2012, the US Preventative Services Task Force first made the following recommendation with an associated D Grade: The U.S. Preventive Services Task Force (USPSTF) recommends against prostate-specific antigen (PSA)–based screening for prostate cancer. At the time, prostate cancer advocates objected strongly, warning it would result in many more men diagnosed de novo metastatic, and ultimately more disease specific deaths. Sadly, we have seen this manifested, especially with respect to younger men. AnCan clearly sees the trend along with a lack of support…

Ken Anderson (to Everyone): 6:36 PM: good post Russ….

John I (to Everyone): 6:47 PM: walter stadler is at U of Chicago–I saw russell szmulewitz at U of C & loved him bue insurancacemade me stop John I (to Everyone): 6:49 PM: alicia morgans https://www.nm.org/doctors/1417011529/alicia-k-morgans-md-mph

Russ Smith (to Everyone): 6:49 PM: Joe, email me at *******. I am from Chicago and on ADT, Lupron and Casodex, I use Trimix.

John I (to Everyone): 6:52 PM: Alicia Morgans’ telephone 312.695.0990 John I (to Everyone): 7:05 PM: Thanks MUCH for your hospitality everyone

Ken Anderson (to Everyone): 7:06 PM: thanks for stopping by……