I'm laid up in bed today with the most common coronavirus (i.e., a cold - but it sounds so much more dramatic to call it a coronavirus these days). Because my brain is foggy from cold meds, I can't concentrate enough to write, and I certainly can't go out in public. So I was looking at some old threads and some of the replies from others. I found (to no one's surprise) that there was a lot of good information, and also a lot of well-meaning misinformation. I also noticed that sometimes the OP responded to me, but did not hit the reply button, so I never saw the reply. I am humbled by the number of followers I have on this forum, and I try hard not to abuse that trust. I want to reach out to as many as I can.
•I try to get through as many new posts as I can to which I feel I have something to offer. I usually spend about 3-4 hours a day on this. I am often as brief as possible in my replies, especially is I am on my iPhone at Starbucks. It is easier to supply references, including articles I've already written on appropriate subjects.
• I do not read the responses of other people on this forum, unless they respond to me directly. I could spend all day qualifying or correcting posts, and I just don't have the time. This forum is huge and active (much bigger than others I've been on). This also means that I may be duplicating exactly what others have said.
• I do not usually read posts about new studies. I'm probably already aware of them, at least the ones that matter. I also don't think it serves a useful purpose to quote a whole abstract that can be read more easily on a link. I also think it does patients a disservice to quote a study without assessing the quality of that evidence. I do recognize that those who quote abstracts are trying to give others hope. But over time, it only adds to the confusion. Every day, I see 30 or so such studies, most of which are irrelevant to patients.
• I save my responses to long posts for last. I can check the profile for the background info, so it helps if the profile is complete and updated.
• I am here to help people, so I am more apt to respond if there is an actual question about therapy or support.
So, if you want my attention. it has got to land in my inbox. That will happen:
• the first time you start a thread
• if you hit the reply button after I respond
• if you private message me
I hope this didn't come across as conceited - I actually think I don't know a lot more than I know. I've been blessed to meet many amazing doctors, who always add to my knowledge. I've even been more blessed to meet many patients who have graciously allowed me to play some role in their prostate cancer journey. I continue to learn even more from them.
- Allen
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Tall_Allen
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Allen, The work you do here is incredibly helpful to so many. It does not surprise me that you spend 3 to 4 hours a day answering questions. Add in all your research time and this is virtually a full time job. You have been amazingly helpful on my own journey via both our public and private communications.
You will never know just how much you’ve helped many of us but on behalf of the group, you have our heartfelt appreciation!! Thank you! Thank you! Thank you! Hope you have the time and strength to keep up your good work.
And thanks to all the others here that try and help their PC brothers. It truly restores my faith in the human condition.
And yes you are a bit arrogant, but you are entitled to be arrogant for the quality of your contributions. Because you are willing and able to keep up with the literature, I think I trust a lot of your opinion more than that of most Docs, on this particular subject matter.
W go back at least three years, Allen. I have great confidence in both your knowledge and judgement. I put the highest value in your council. There is no doubt you have reduced the anxiety and suffering of many and dramatically improved the quality of life for even more.
Thank you for all the work you do to help us, and your dedication in making critical data easily available. For all you do, you deserve to be a bit arrogant
Now get some chicken soup, hot tea with honey and go to bed.
Yes sir, i just arrived at downtown Indianapolis. 2hrs15m from home Ft Wayne. Tomorrow’s appointment @ IU Simon Cancer Center. The next treatment not really, blood test of course, med changes maybe, LUPRON injection Yes. My mind is feeling like on overload. Must be the Lupron 3rd month in and Zytiga and Prednisone combo. Got to get my mind slowed down. Mind games are terrible SE’s that I never realized would happen on ADT Plus Abiraterone/Pred. Mix. I’m gonna take a mind rest. It that’s allowed.
One of the things I've learned since practicing mindfulness is that the mind is not always one's friend. A racing mind going in non-productive circles has been the most annoying "side effect" of my cancer diagnosis. It's not something I could think my way out of - that only made it worse. It's compounded if you can't sleep because of it.
I do hope you are well by now and always, everyday feeling better and better. "Whatever anyone thinks f you is non of your business". If you are well now stay well.
Thank you for you knowledge Tall Allen from Small Alan
You are clearly a leader in this forum and in this field! I am new to this diagnosis (May, 2019) and like others, often look for your posts and replies.
If you have time, and the fog lifts, I wonder if you could post a list (and links) of the studies that you track (I.e. “that matter”) in one place.
Thank you so much for all you do for me and our brothers (and families).
It's not something I track. There are some that catch my eye - higher levels of evidence, mostly; well-done studies at top institutions; randomized clinical trials (RCTs), especially large and blinded ones; multi-institutional or consortium studies; if not an RCT, some attempt made at simulated randomization; anything with the imprimatur of NRG Oncology, SWOG, NCI, etc. It has to be published in a peer-reviewed journal of good repute. I also safely ignore most press releases, youtube videos, random internet sites, mouse studies, and epidemiological studies. Database studies (e.g., SEER, NCDB, CAPSURE, etc.) are good for some things, terrible for others (because of the limited info they collect).
Get well soon TA...Humble advice: Drink some turmeric Milk at night and Ginger tea in the morning. Boosts immunity....But ...no randomised controlled trials yet.
Please get well soon, TA - we need you! Meanwhile, lots of lemon, honey & glycerine hot drinks plus zinc lozenges and garlic if allowed with PCa. Hope you have a kind neighbour/friend nearby.
Aynoy, lemon, honey and a drop or two of pure glycerine in a glass of hot water can all help to soothe a cough/sore throat, with the glycerine helping to line/moisturise the throat.
Can’t believe hearing that sad news about your friend - my friend rang this morning to say her hubby had just been diagnosed with throat cancer and is facing surgery next week. Perhaps wise that your friend checks with a Dr first as to drinking the juice of an acidic fruit like lemon. Very best of luck to both your friend and mine.
I am relatively new on this site and always amazed by the total number of people willing to help others find some direction. PCa has its way of changing everything in a guys life (ie - up at 4:20 am reading these posts). Your a good guy for all that you do... sharing a part of your life with guys you only know from the few words posted here on this site. At times I can tell in the tone of your type that your eyes are rolling but you still pen something in an effort to get us back on track. Thank you!
Thank you for sharing your knowledge with so many of us on this forum. I have personally benefited from the research you do and your recommendations. Please keep up the great work, and get well soon!
Thank you for writing this. You’re such an asset to this forum.
I’ve personally utilized your knowledge so many times and I’m always searching for “what does TA say”. I’m truly grateful that someone who doesn’t know my dad or myself would take the time to respond to my questions.
Here’s your time to rest and relax, so you can get back to Starbucks and your IPhone.
I really appreciate your frank and knowledgeable comments. You are such a positive force on this forum and the time you spend is so generous. And now having discovered your blog, I have so much more reading to do to help understand this journey.
Although I am mostly a silent observer in this forum, I have always found your posts extremely helpful and I want to add my thanks to the many others that I see in the comments here. You're doing a very valuable service for hundreds and hundreds of men who struggle to understand the intricacies of this disease.
Not sure you will read this, but hope you are feeling all the love and appreciation coming at you in response to this post. PC is a dark world, we need lights and on this forum and in your work, you burn very bright. Much thanks to you.
Thanks to all your diligent and informative researching many of us are kept up to speed on this ever changing challenge. Hope you feel better very soon
Thank You So Much. You’ve replied to almost all my posts. It’s extremely helpful. I also read your responses on others queries to gain insight. Get well soon.
Thank you TA for contributing your well researched insights to this forum. Good karma. I could immediately tell that you are one of the most respected people here. Clearly, you don’t suffer (probably well meaning) fools gladly, but it really does help to have a scientific, objective viewpoint to cut through the c**p. Best wishes for a quick recovery.
I also want to thank you for the hours you invest in this forum. I was so confused when I was first diagnosed and desperate for information. I am so grateful to you and the other people posting here for helping me through a difficult part of my life.
You are often the cool head of reason offering some calm in this emotional storm. You always try to chart a middle passage guided by facts and tempered by hopeful reality. I am not a religious man, but I am a spiritual one. I am thankful to know that the best part of humanity exists in people such as yourself.
Allen, Thanks for all you have done and said and helped out with sound advice and guidance, words of wisdom indeed. One day I hope to see you at some conference and shake your hand ..er...maybe an air handshake these days. I was going to say hope you are healing well...joking! sorry...just strike that never mind that term, just get better real soon.
Wings aka Dan in soon to be rain covered So Cal -Hemet
Je ne suis pas un membre actif mais je lis tous les jours ce forum d entraide, de conseils et de soutien. Vos post sont courts, précis et m aide à y voir plus clair. Bon rétablissement et si vous voyagez en Europe, welcome at home
I always look forward to the information you post. You are so thorough and knowledgable! I appreciate that you take your time to learn SO much about this rotten cancer. You have helped me to understand the disease, and you have enabled me to respond to my husband's situation with knowledge and foresight. I hope you feel better soon and have a good day!
This disease comes on sudden to most, and your responses have been quick to educate and calm. I have personally found both wisdom and compassion in your messages. You have been a true inspiration for all of us that live within these pages, myself included. Many thanks TA, and I hope that you feel much better soon! Kind regards.
To be honest with you, I wouldn’t have been able to pull out of the doldrums when first diagnosed in 2017 if it was not for your expert advice and all the good brothers in this forum.
Really glad I found this family although I wished it was under a different circumstance.
When someone poses a question here, instinctively I scroll down to read your reply and that of Bro Nalakrats, and for sure everyone else’s. You and all make more sense to me than some of the literature I come across and some of what I hear from my doctors.
Really appreciate your great advice and just ride out the flu bug 😉
My very best to you and thank you for your wisdom. God Bless
Wishing you a speedy recovery. I have read through all these comments and I echo all that has been said. Thank you so much for your service and wisdom. I am also really appreciative of your continued reminders on the importance of mindfulness! Namaste 🙏🏻 Janet
Tall_Allen, I am not a regular responder, but a hungry reader of those I respect. You along with narkelrats ( not exactly his handle) I was diagnosed at age 69 and now 77 . Presently on Lupron and Erleda with the usual side effects after proscetomy and Radiation. Last PSA of .10 and .000 three month earlier. Hope the cold is short lived and keep on keeping on we need you. Snoskimobike
Thanks Allen, You have certainly been an amazing asset and help to me on this journey. Your posts are greatly valued on here. Feel better, for me Chicken soup is still the best remedy for a cold.
Please please dont get infected because you bring a wealth of information to this wonderful community thereby giving us hope when there seems to be none. And for that, i am truly thankful! Feel better soon 🙏🙏🙏
Wow. What a fan club. You are actually the only person I am "following" on this site. But before that inflates your ego, I am sure there are a few who are sticking pins into their little Tall_Allen dolls. You will surely get well better in 7 to 10 days. Enjoy.
I'm better already. I guess all the well-wishing helped! I thought the pain in my back was from laying on my couch too long -- voodoo didn't even cross my mind! I probably should see a shaman.
Probably a gentle ole rhinovirus that will disappear with plenty of sympathy (that this group is supplying!). Your objectively is valued and is a nice mix with the personal experience generated within our group. Thanks. =Rob.
Feel better. God placed an individual like you here to help clarify for us what the studies say that we all don’t necessarily understand or create confusion. Thank you! Be blessed!!
Tall...somehow i got off of your blog and have no idea why. Anyway, i see you had what might have been the covid virus about 5 months ago and while I assume you are fine now, I just wanted to echo what so many other members of this forum say about how valuable your advice has been to me during the past couple of years , and more recently...and importantly...for my friend who has a serious case of small cell carcinoma. Thanks to you we found Dr. Beltran at Dana Farber and he has been her remote patient, working in conjunction with is local Med Onc for the past six months. She has done a wonderful job in his case and he is in better shape today than he ever hoped to be. Dr.Farber is very optimistic about his future prognosis and his recent scans, following 6 rounds of chemo are looking good. Most importantly, at least to me, is your honesty and objectivity in the information and advice you convey. You are a tell it like it is man and whether your advice turns out to be right, wrong or somewhere in between, we know it is informed and your best honest opinion on the subject or case at the time. Stay safe....we need your help going forward.
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Attention Travelers on Pluvicto!
Some sad truth. Today I am like this.
Worthy of public mention to brother Docam
