This week, Peter Kafka, our Board Chair and Lead-Moderator for the Low/Intermediate Risk Prostate Cancer Virtual group highlights an issue that crosses the minds of many living with cancer:
How can I have cancer? I don’t feel sick!
One of the odd things about a diagnosis of prostate cancer as well as other cancers is that it is often asymptomatic. Prostate cancer is often detected though a routine blood test or digital rectal exam. This is especially true for men who get regular physical exams. Perhaps there might be some changes in our urinary function as we age, such as increased frequency and a lessening of the stream. But generally, many men, in our sixties and seventies often proclaim that; “I am quite healthy, active and fairly fit. How can I possibly have cancer?”
Fortunately, most men with a diagnosis of prostate cancer have very low-grade disease that might never need treatment beyond routine active surveillance by a doctor. The only “downside” being that the man, and his doctor and family must be comfortable living with a diagnosis of CANCER and understand that the rate of growth is so low that it might never need further treatment. Such men will never experience symptoms of prostate cancer beyond perhaps changes to their urinary stream or frequency which is common for most men as we age.
Even men like myself, with advanced prostate cancer can go through cycles where one feels quite healthy and vigorous yet tests can indicate that the cancer is spreading and growing within our bodies. With the advent of advanced high-tech scans such as the PSMA scans, genetic testing, multi parametric MRI’s and other methods of early detection, indications of some level of prostate cancer progression can be observed at increasingly earlier stages when there are no outward symptoms or signs of distress.
The down side of these advances in early detection is that our minds can get into denial mode because we “feel just fine”. In fact, it is very often the case that it is the side effects of treatment regimens such as ADT drugs, or the after effects of surgery or radiation that make us feel sick rather than the cancer itself. Prostate cancer can be quite sly in this way and trick us into thinking that we are much better off without any treatment. This is the dilemma of our modern age. It used to be that men were diagnosed with prostate cancer only when it had already progressed to the point of distressing symptoms which could not be ignored. We now live in a very different paradigm. Lucky us!
Each month Memorial Sloan Kettering Cancer Center in NYC features a different herb in their ‘About Herbs’ series. This month it is cannabis, and you can read more here .
AnCan’s Board endorses medical marijuana for symptomatic and palliative use. In the context of cancer, we do not believe it is any way curative despite the many particpants in our groups over the years who have suggested that high doses of CBD, Simpson Oil, cannabinoid suppositories and goodness knows what else cure human cancer. The evidence is NOT there at this time – and to argue that clinical trials are impeded because medical marijuana is not federally legal ignores the evidence from the rest of the world. We only wish 10% of the money spent by these particpants on trying to ‘cure’ themselves of PCa with MMj would have been donated to AnCan.
Elsewhere on our website, AnCan features three webinars on medical marijuana/cannabis; while found with our prostate cancer resources, they are pan-cancer in nature. You will find all 3 at https://ancan.org/prostate-cancer-resources/ under Complementary Medicine. (Editor’s choice is the Donald Abrams webinar – Dr. Abrams runs the UCSF Complementary Osher Center, is Chief Oncologist at Zuckerberg SF General, and is nationally recognized for his expertise on medical marijuana.)
Yesterday, our friend and Advisory Board member Howard Wolinsky, published his piece on MedpageToday re. the topic I blogged on two weeks back. Here it is! https://www.medpagetoday.com/special-reports/apatientsjourney/84715
Radionuclide technology to manage rather than screen advanced prostate cancer is an intriguing treatment alternative that has not yet been FDA approved in the US, although we are hopeful it will happen in 2020. There are privately paid as well as trial opportunities overseas, mainly in Germany and Australia but also in S. Africa. The guiding agent is attracted to PSMA, a protein often but not always expressed by prostate cells; the radionuclide is most often lutetium (Lu177) or actinium (Ac225) and sometimes a combination of both.
AnCan has supported several men who underwent this treatment, both in in trials in the US as well as in Oz and Germany. Most recently a long time particpant, whose PSA was increasing after several treatment modes including Xtandi and docetaxel + carboplatin, made the decision to enter Lu177 PSMA treatment in Germany. Here is his report after the first session in Heidelberg; he is now back stateside. This report also appeared on Health Unlocked. (rd)
I am sitting in my hospital room in Heidelberg hospital and thought I would send this update.
To get an appointment at Heidelberg, one needs to go to www. Ukhd.org and fill out the online application. You will need to scan many of your records into your computer and then upload them on the application. It is also very important to upload all the images from your Psma scan, otherwise you will only receive the Vision trial dose of Lu177. They will not be able to dose adjust based on your scan, and you will probably not receive Ac225.
Within 24 hours of sending my application, I received an email that said I had been accepted for treatment with an appointment date in 2 weeks. I was given an IO number to be used for correspondence and questions (international office).
I booked airfare from JFK to Frankfurt. Only $650 round trip. (Round trip from Norfolk was twice that amount) so I had my appointment with Dr Drake on Tuesday, and flew out that afternoon. Flight was 7 hours. Arrived Frankfurt at 5 am. There is a train station at the airport where you can buy tickets to Heidelberg with a transfer in Mannheim. Train ride was 1 hour. Took a cab to the hotel. It could not have been easier.
We are staying at a cute, clean, well appointed boutique hotel called Rafaela, run by a very nice woman named Maria. Only $100 per night. Walking distance to old town. And Heidelberg is a beautiful charming city on a river with a castle. Wonderful restaurants. Lots to see and do. There is a bus stop 1 block from the hotel that takes 5 minutes and drops you right outside the Kopfklinik. Alternatively you can walk the 20-30 minutes.
Today I arrived at the clinic at 8:15 for inpatient registration. It was a breeze despite a slight language barrier. Then up to nuclear medicine on the 4th floor. There nurse Tomas told us the rules regarding radiation safety. Visitors are limited and must remain behind a 4 foot protective wall. My clothes upon discharge must be placed in a protective bag until washed at home.
The doctor starts your IV and draws your blood. (BTW, you do not see Dr Haberkorn.) He answers your questions and you sign the consent. At 12:30 he injected a combination of Lu/Ac at a dose of 7.4 and 2.0 Mbq. Direct push, no discomfort. Three hours later you go for a scan to determine the radioligand uptake by the tumor. My tumors were intensely PSMA avid, and fortunately because of this I had a great uptake of radiation by the tumors. I’m highly radioactive, and the doctor said this was a very good sign, and bodes well for a successful treatment. I will remain in the hospital for 2 days
Follow up will consist of a PSA every 3 weeks. He warned my PSA may rise due to tumor kill. Also routine bloods every 2 weeks. My next appointment is in approximately 7 weeks on March 17. Doctor said I would most likely get 3-4 treatments. Cost of first treatment is 9800 euros.
I am pleased with my choice so far. Heidelberg oozes positive energy. The hospital seems to be very organized, efficient, and the staff are friendly, well trained, and speak English.
Editor’s Highlight …… living with advanced prostate cancer is a mental burden – hear how our guys address it!
Long-term Xtandi use may suppresses PSA response; using Opdivo/nivolumab; addressing advanced PCa blues; ice cap (kap) for chemo & other tips; spot RT for oligo disease; dizziness when exercising; PSMA scans; how does AR V7 test direct treatment; using ultra sensitive PSA post RP; RADICALS-RT results; should you add 2nd line anti-androgen to chemo?
For a copy of the Chat URL’s and information, please go to our PCa Forum (click top right). And feel free to post there yourselves on any PCa related topic.
Kudos – or as Ali G would say, “RESPECT” – to our newest Moderator (well, almost!), Richard Farmer. Richard and Kenny Capps, ofThrowing Bones for a Cure, are planning to launch an AnCan blood cancer virtual group within the next few weeks.
In the meantime, Richard just published Reflections On The Journey of Cancer and Marriage in Cure’s online magazine. You can read it here. Nothing comes easy …..
Editor’s Highlight …… Are generic drugs like ‘flying in a Boeing 737 Max?’
Medicare’s positive Next Generation Sequencing revisions; successful oligimetastatic treatment; testostrone recovery after hormone therapy; furore around generic drug manufaturing; Lupron shortage; successful self-advocating; how long do you stay in adjuvant hormone therapy?; positive experiences with Dr. Antonarakis @ Johns Hopkins
For a copy of the Chat URL’s and information, please go to our PCa Forum (click top right). And feel free to post there yourselves on any PCa related topic.
Loss comes from many sources …not losing a loved one alone. How we, as men, grieve a loss can be complex and insufficient. I note how this author is still wrapped in deep mourning after several years … despite his own tips.
Our thanks to John Novack, our buddy at Inspire, who sent this article that appeared on the nextavenue website.
Once more, our Board Chair Peter Kafka has words of wisdom in the face of progressing disease:
Many years ago, people used to bequeath their bodies after they died for medical research. So little was known about the mysterious way the human form worked and all the intricacies of the many parts. In the world of prostate cancer, it appears that more significant knowledge and understanding comes from the experience of those of us living with and managing this disease. Why wait until I am dead when I can bequeath each day of my life to the expansion of knowledge and understanding of this crazy disease that affects each man a bit differently.
The other day I was asking myself, “why am I moderating the AnCan Low & Intermediate Prostate Cancer group?” A fair question since from the onset 6 years ago my disease was anything but low or intermediate grade prostate cancer. Perhaps it is because of the plethora of treatment modalities I have utilized in these past six years.
I can speak from experience about blind biopsies, pathology reports, multi-parametric MRIs, CT, bone and PET scans, Robotic prostatectomy, urinary retention, Indwelling and self-catheterization, incontinence, ADT, including three kinds of second line anti androgens, intermittent ADT, IMRT and Proton Beam radiation, two kinds of PSMA scans, germline genetic testing, somatic genome testing and the vital importance of record keeping. I think I have left out a few.
So, when my disease progressed recently as evidenced through a PSMA scan and biopsy and my medical oncologist brought up the notion of chemo therapy I did not greet the news with an attitude of “ABC” (Anything But Chemo) but rather “Bring It On”.
By the time I am done with this disease, or it gets done with me, I will have quite a wealth of experience to share. My medical oncologist called me “an outlier” the other day for a variety of reasons. As a child of the 60’s I thought I was all done experimenting with drugs. Little did I know! (Yes, you can laugh here – I am). I think that the opportunity AnCan provides for us to share our stories and really hear each other and fully understand the concerns and issues has really helped me navigate this road these past six years.
MedPage Today Editor in Chief, Dr. Marty Makary, interviewed investigative journalist, Katherine Eban, about her recently published book, Bottle of Lies: The Inside Story of the Generic Drug Boom. For those of you who listen to our weekly videoconferences for Advanced Prostate Cancer, you will probably recall that I have expressed faith that generic drugs that have been FDA-approved as “safe and effective” are just that – safe and effective. But after having listened to this interview (Is that a Centipede I See in My Capsule??), my faith has been shaken to its foundation.
In the years since I retired from the pharma industry as a research pharmacologist, many things have changed. Like many other manufacturing operations, the generic drug industry has mostly moved offshore, mainly to India and China, and the FDA’s oversight capabilities have been seriously diminished, according to author, Katherine Eban. I have not yet read the book, but the 32 minute podcast referenced above is something you need to hear. But be forewarned, this is shocking and deeply disturbing. But there are steps you can take to ensure your generic drugs are truly safe and effective. Whenever possible, insist that your pharmacist uses generic drugs manufactured in the U.S., Canada or Europe.
Great follow up article from Marty Makary MD on Valisure, a pharmacy that tests ingedients before it uses them. (rd 3/11/20)
