My husband is on this same journey, and I've been grateful to read your honest words about how you feel dealing with this beast. It helps me to better understand how he is feeling, as opposed to how I am feeling. So thank you for sharing your feelings. Here's hoping that you have some time in remission and are able to keep cancer out of the foreground for some moments of that time.
If you're hoping to see prostate cancer through patients' eyes, I can propose a way to do this at scale. At ancan.org, where I'm a volunteer, we offer regular video peer-support meetings for men with prostate cancer. The calls are not limited to them -- caregivers like yourself are also welcome, with their partner or alone. There are also regular meetings only for caregivers, where they discuss their challenges.
Prostate calls are run for men at three treatment stages -- active surveillance, low/intermediate risk, and -- the group I'm in -- high-risk/recurrent/advanced.
The prostate calls are full of treatment information -- we of course can't offer medical advice, but we know a lot of options, and the moderators in particular keep up with the journals. For men who are mostly looking to discuss their emotions we offer separate Men Speaking Freely calls, open (only) to men with chronic illnesses including cancer.
A surprising number of men join the prostate calls just to be in community with other patients like themselves. Though the subjects are mostly tests and treatment, it can be moving to hear from the men -- some eloquent, some faltering; some still vital, some diminished by illness and treatments.
Feel free to write back, here or privately, for more information.
I appreciate very much being able to hear about this road that you are on. I'm always curious. Some of the comments here are very interesting too. Peace & Blessings to you my friend. JF
Hi Ben, Yes, survival to be treated is a form of winning - until options narrow. Yesterday I learned that I am "gated" from the use of Pluvicto treatments at the moment because the present FDA approval does not provide for patients unless they have been treated more extensively than I have - essentially a patient who has avoided all chemicals both HT and chemo. There is a international RCT phase three in process, but one cannot gain admittance to the trial unless the patient has had some minimal HT treatment. So, in a sense my battle continues but, and I no longer have much functioning ammo. The FDA may eventually open radioligand treatment to earlier diagnosed men with PCa, but it may not help me or others whose timing runs out. I just passed by seventh anniversary of initial diagnosis.
The capitalistic forces of all the parties involved in the introduction of new treatment procedures protects itself, so everyone's clocks often do not mesh.
Hello Ben, Good for you keeping up the good fight. Pluvicto might be next for me since my METs now outnumber the maximum allowable for MDT. Options narrow for us within the brotherhood. Time for you to write some more. JPD
A pleasure to hear from you again! We both have been fighting that good fight for quite some time -- which in this battle is a kind of winning. I'm sorry that metastasis-directed therapy is off the table now. But here's to Plu getting pushed forward in the treatment cycle! Rick Davis talks about the ABC men -- Anything But Chemo! Hell, yes.
My husband is on this same journey, and I've been grateful to read your honest words about how you feel dealing with this beast. It helps me to better understand how he is feeling, as opposed to how I am feeling. So thank you for sharing your feelings. Here's hoping that you have some time in remission and are able to keep cancer out of the foreground for some moments of that time.
Thank you for your note and good wishes!
If you're hoping to see prostate cancer through patients' eyes, I can propose a way to do this at scale. At ancan.org, where I'm a volunteer, we offer regular video peer-support meetings for men with prostate cancer. The calls are not limited to them -- caregivers like yourself are also welcome, with their partner or alone. There are also regular meetings only for caregivers, where they discuss their challenges.
Prostate calls are run for men at three treatment stages -- active surveillance, low/intermediate risk, and -- the group I'm in -- high-risk/recurrent/advanced.
The prostate calls are full of treatment information -- we of course can't offer medical advice, but we know a lot of options, and the moderators in particular keep up with the journals. For men who are mostly looking to discuss their emotions we offer separate Men Speaking Freely calls, open (only) to men with chronic illnesses including cancer.
A surprising number of men join the prostate calls just to be in community with other patients like themselves. Though the subjects are mostly tests and treatment, it can be moving to hear from the men -- some eloquent, some faltering; some still vital, some diminished by illness and treatments.
Feel free to write back, here or privately, for more information.
And again, thank you for your comment!
Thank you Ben, you're a gift to many
I appreciate very much being able to hear about this road that you are on. I'm always curious. Some of the comments here are very interesting too. Peace & Blessings to you my friend. JF
Hi Ben,
Thank you (again) for sharing parts of your journey with us.
Articulate, polished, and heartbreaking prose.
Glad you were able to benefit from this RX, despite its toxicity.
Hope to see you and Kathy soon to share pictures of one of life's graces, the Grandchild.
Hi Ben, Yes, survival to be treated is a form of winning - until options narrow. Yesterday I learned that I am "gated" from the use of Pluvicto treatments at the moment because the present FDA approval does not provide for patients unless they have been treated more extensively than I have - essentially a patient who has avoided all chemicals both HT and chemo. There is a international RCT phase three in process, but one cannot gain admittance to the trial unless the patient has had some minimal HT treatment. So, in a sense my battle continues but, and I no longer have much functioning ammo. The FDA may eventually open radioligand treatment to earlier diagnosed men with PCa, but it may not help me or others whose timing runs out. I just passed by seventh anniversary of initial diagnosis.
The capitalistic forces of all the parties involved in the introduction of new treatment procedures protects itself, so everyone's clocks often do not mesh.
Hello Ben, Good for you keeping up the good fight. Pluvicto might be next for me since my METs now outnumber the maximum allowable for MDT. Options narrow for us within the brotherhood. Time for you to write some more. JPD
A pleasure to hear from you again! We both have been fighting that good fight for quite some time -- which in this battle is a kind of winning. I'm sorry that metastasis-directed therapy is off the table now. But here's to Plu getting pushed forward in the treatment cycle! Rick Davis talks about the ABC men -- Anything But Chemo! Hell, yes.
Good luck -- look forward to future installments.