There is a ton of expertise and experience here. Why don’t a few of you get together and form a consulting company dealing with stage IV Pca. Members/patients would be able to dial you in via a speaker conference telephone call when a member is visiting their doctor. This way you would be able to ask the right questions and follow up with the latest information/comments that the doctor is unaware of. The fee for this could be $XXX.XX per hour. Not really for the money but most of us (my guess) would be more than glad to have you experts “sitting besides us” when visiting our doctors.
Good Idea? Bad Idea? Impractical Idea?
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j-o-h-n
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I've been offered money, but I've refused. I think of it as part of Tikkun Olam (Healing the World) and see it as part of my duty as a human being. That's not to say I couldn't charge, and God knows I can use the money. The advantage of paying a fee for the patient is it makes his commitment more tangible, and he will be inclined to share a lot more of his thoughts and feelings, not to mention data records that I usually have to guess at. On the other hand, I don't want to exclude anyone who doesn't have means to pay - health care carries a huge financial burden already. Also, I'm not a doctor and don't want anything I say to be interpreted as patient care. I have no problem in saying things like, "here are some things to raise with your doctor," or "here's some information to guide your thinking," or "here's a good specialist worth talking to." I do sometimes go along with men in my PC support groups on visits with their doctors. I'm a pretty good interpreter between Medspeak and normal English, so I can facilitate mutual understanding sometimes.
Over the years, I've spent a lot of time on Healingwell.com, which is organized differently. there are many knowledgeable guys there who help out newbies across a wide range of problems. I find HealthUnlocked a bit overwhelming. There are dozens of posts landing in my inbox that I can't turn a blind eye to. I ignore quite a few if they are so off the wall that I can't imagine a rational patient taking it seriously. But still, this is consuming a lot more time than I wanted it to. I write novels, and I haven't written a word in several months
Sorry to dump all that , but your question led me to think about it more clearly (and with no resolution yet).
Thank you for your reply (no problem my wife dumps on me all the time). Your charity , good will and support here is greatly appreciated by all. Thank you again.
Interesting idea. That would be cool, but I can understand and appreciate the reservations our "experts" have.
Anyway, it seems timely to express my heartfelt appreciation for all the time and energy many people put into HealthUnlocked discussions. The collective wisdom and experience are extremely valuable for me as I deal with the many questions and concerns of PCa. The camaraderie is comforting and encouraging. I feel fortunate to have found this site.
We also feel honored and fortunate that you have joined us in this brutal fight against this damned disease. But remember to always keep your sense of humor.
I thank you all for your help and expertise. I only wish I had found you years ago. I think we would be in a different situation today.
If I could ask your opinions before we consult with a Doctor in a new network tomorrow. Dad has had nothing to stop the cancer since the Radium 223 ended in November. His doctor said “end of the line- nothing more to offer”. 2nd doctor same. (Same network, and they parroted each other). I’ve been continuing the supplements and minerals, but we need more. I asked for the Guardant blood test for Keytruda. Other than that, what options do we have?
Lupron-zometa-bisposphonate therapy-Provenge-aberaterone-Taxotere(10)-enzalutemide/prednisone/Lupron/- ending with Radium 223. Stable bony metastatic- no progression or new mets as of January.
Any advice is greatly appreciated. Or a referral in the Boise,Idaho area.
Other than clinical trials, estrogen patches - an old pc treatment - sometimes helps. The only other medicine I don't see on your list is Jevtana. It sometimes works after taxotere fails, and in some cases may restore sensitivity to Xtandi or Zytiga. If he's taking Zometa, he should add celebrex. There are some clinical trials of new medicines like proxalutamide or Lu-177-PSMA that are promising. It sounds like it's been quiet since January, which is certainly a good thing.
2. Needs to be done in a way that doesn't cross the line into the practice of Medicine or into quackery.
3. In my personal estimation there are only two people here that consistently do that are Tall Allen and Poshea.
4. I am a retired corporate attorney with healthcare industry experience and also some fairly deep expertise on setting up such ventures. I would be pleased to help either or both of them do so.
5. I think this could be initiated with less effort than might be apparent.
6. If either or both of them are interested in discussing how they might take some first steps, they should leave me a private message here.
It’s a good idea , problem is after chemo the brain is not quick with facts and figures, besides worked sales for 40 years I for one don’t want to get back to the fight or flight 😜😜😜😜
Dear Brothers. Please remember this is a nonprofit platform with hundreds/thousands of people who share their helpful thoughts without hesitation or compensation. That you value all of this effort is wonderful and honors us all. You are all welcome/encouraged to donate at Malecare.org/donate but I hope no one creates a payment portal for the kind of help offered to all here without cost. There are many who are suffering financial toxicity and I don’t want those guys left out or stigmatized. Sharing information when you have it and reaping when you need it is how we help each other, and the world.
you are kidding right....the "experts" up here are one step away from an insane asylum..you admitted a sexual perversion of having your wife dump on you...Nalakrats drinks Gator Blood...below are the pics of the top 4 experts up here..imagine taking one one these guys to a conference at The Mayo Clinic:
Good? Bad? There is another word for your idea. I can't speak for the states composing the U.S. and, most importantly, I am not an attorney, but the word is not good or bad but ILLEGAL. You are proposing practicing medicine and you would not be properly credentialed to practice medicine in any state much less all 50. That is the job of State Boards of Healing Arts. Physicians are in a labor union and they have a monopoly. Ask the naturopaths. Most young osteopaths (DOs) do not know about the wars their older colleagues went through to get licensed and then medical staff privileges at the leading hospitals in their towns.
I have served as a consultant to medical practices in my work for hospitals in their planning and marketing departments. I also consulted when I was in the medical software (triage systems) sector for many years.
Nice try john. Tall Allen you were smart to turn down that money.
Malecare Is indeed a research group. Our work has led to two patents and Many peer reviewed papers. We’re a highly ethical and effective 20 year old advocacy nonprofit with several “firsts” to our credit. Please check out our work at Malecare.org
Dear Brothers We just had a burst of five slander filled comments in this thread. Unfortunately, we still have trolls that are focused on self promotion and denigrating the good work of others. They then turn their BS around and slander even more. No doubt, one or more of them will create a new profile so that they can post a claim they were censored. So, to reduce the distraction, I have turned off "replies." to this thread. Thank you to J-o-h-n, Calbear74, gusgold, rust, larry_dammit, cesanon, Tall_Allen, jdm3, dadeb, softwaremom00 and nalakrats for your sober comments and regrets that scum have interfered with this conversation.
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