tag:blogger.com,1999:blog-5398956932575790.post451488880005176033..comments2024-01-23T21:37:27.869-08:00Comments on Nick's Myeloma Blog: War correspondence and punch to the gutNickhttp://www.blogger.com/profile/09733312143898687572noreply@blogger.comBlogger11125tag:blogger.com,1999:blog-5398956932575790.post-82238581172665083252014-03-22T20:48:15.542-07:002014-03-22T20:48:15.542-07:00I feel compelled at this time to thank you Nick fo...I feel compelled at this time to thank you Nick for always providing the most informative and comprehensive information for any of us who read your blog to take in and digest as we choose. You were there for me on January 12, 2011, when I was searching for information. You guided me as I had asked, and I will be eternally grateful. From there it was Glenn M. whose blog was a tremendous help to me. Then Bart F. who does not blog often, but what he wrote was so full of information, and finally Doug C. Thank you to all of you. In the end, I made my own decision and never looked back. Nor did I ever look at someone else's choice in a critical damming way. I read a lot, and through all that, I gained an understanding of choices. It is because of those willing, like you Nick, to write about the information they have researched that people like myself, less able to do such extensive research, can become informed. As many of you have commented, in the end, I chose what I felt strongly would work for me, and I never ever looked back. But to make this choice was much more decisive with the information I read and the personal contacts I was able to have with Nick, Bart and Doug. And to Glenn, you never knew what an inspiration you too were to me. All because you all care. Cphttps://www.blogger.com/profile/08287266552254455101noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-80961613362718425562014-03-19T17:48:51.113-07:002014-03-19T17:48:51.113-07:00Like a highly skilled, educated, intellectual, ana...Like a highly skilled, educated, intellectual, analytical,successful person might do. You have chosen what you think is the best solution, but it is what you have researched and chosen, However, you can bring a horse to water, but after that it is up the horse to drink. Nick, you can do your due diligence, chose your path, and let others know what you believe, but after that it is up to them, and you have to accept that! You are are remarkable human being, logical, level headed, and a REALIST. I just hope people will take your input into their decision process when they chose their path to beating myeloma. GaryGary P.https://www.blogger.com/profile/07820764114164216231noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-81948972622630829712014-03-18T21:09:16.436-07:002014-03-18T21:09:16.436-07:00Nick,
With all this, I think one loads in all the...Nick,<br /><br />With all this, I think one loads in all the data possible to assimilate, makes the most informed decision possible and trusts the doctors at the helm and goes forth-- as you have done. <br /><br />Second guessing hardly ever works in life. And if only hindsight is 20:20 then it is not all that helpful: we live right now and not in some Monday morning myeloma quarterback future.<br /><br />As you are pointing out, there are lots and lots of opinions out there-- I have a bunch too.<br /><br />But I think for anyone on the sharp end of all of this, you have to finally respect each person's decision at some point. Key: We're all doing the best we can, even if it we'd like better vision than what we have now.<br /><br />Still: doing the best we can.<br /><br />You have my respect.<br /><br />Danny<br />DanPhttps://www.blogger.com/profile/18040022617098236909noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-20211855578004802602014-03-17T14:41:30.589-07:002014-03-17T14:41:30.589-07:00To those of us who are not at all scientifically m...To those of us who are not at all scientifically minded, this can all get to be a bit much. Especially when first diagnosed. Talk about overwhelming! That is why I am thankful to you and Pat K. for researching, keeping up with it all, and laying out the options for smoldering, newly diagnosed or relapsed patients! We must always be our own best advocates and stay as educated as we can be about the disease. Wishing you continued remission!Lindahttps://www.blogger.com/profile/10624367358276749264noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-33012151625504177582014-03-14T09:10:29.731-07:002014-03-14T09:10:29.731-07:00Hi folks! I really appreciate your kinds words. ...Hi folks! I really appreciate your kinds words. I was really kind of just blowing off steam but also sharing this dynamic so that newly diagnosed patients who encounter the back-and-forth between sometime zealous advocates of UAMS and sometime equally zealous denigrators can learn a bit of context about it, maybe. That said, always nice to get an encouraging word from this community. :)<br /><br />It's unseemly of me to say it in the heat of an argument, but I do agree with the diagnosis: denigrating the path-not-chosen when the path-chosen didn't work out is a coping mechanism. This disease places incredible stress on people and many have it worse off than I do -- so I do my best not to judge people. As I said, I'm not defending Barlogie for his sake and I'm not defending my treatment choices for my sake -- I'm confident in them and would do it again. I call attention to Total Therapy because newly diagnosed patients need to know it's an option. <br /><br />Have an excellent weekend, all! Hug your loved ones!Nickhttps://www.blogger.com/profile/09733312143898687572noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-42750345241464743592014-03-14T08:59:09.138-07:002014-03-14T08:59:09.138-07:00Hi Nick I like to read your blog. I'm in Cana...Hi Nick I like to read your blog. I'm in Canada so I don't realy have as much opitons in what my treatment is/was, I just respect my doctor is making the best choices for me on the available options and I have done well (almost 4 year remission so far) Maybe in your shoes I would have chosen a more intesive route off the bat to aim for a "cure" upfront, but I know if I had not responded well my treatment would have been stepped up accordingly form a single transplant, to a double, to consolidation etc. I would never personally attack another MM's patient's treatment choice, doctor choice, treatment strategy, whatever you want to call it because it is different then mine. Likeyou have mentioned many times, it should be our individual factors which dictate our treatment. I think people are nasty about your intensive treatment because inside they are not happy with the choices they made, or their response to treatment, etc. It makes them feel better about their own situation to speak poorly of yours? MM is shitty, and unfortuneatly cancer can bring out the worst in some people. Anonymoushttps://www.blogger.com/profile/03761050605397727191noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-90561227778110086312014-03-14T03:02:07.644-07:002014-03-14T03:02:07.644-07:00I understand and agree with your analysis. It is ...I understand and agree with your analysis. It is fair and balanced. Age, high/risk low /risk, financial considerations,prior treatment ,etc.--all of these are factors to be considered and you have expressed those clearly as possible. I am being seen by Dr. B for my smoldering/mgus?, I am 52 now. both my brother and father had MM. My brother went to UAMS and was treated by Dr. T<br />Giving MM hell is the only approach that made since to myself and my brother. We have the future to look toward and I want to stop this not only for me , but for my 2 children and my brother's 2 kids. Second guessers and naysayers are looking over their shoulders at their choices and damning UAMS to calm their fears of errors in hindsight which are now irrevocable.Anonymoushttps://www.blogger.com/profile/06707406119325758192noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-21837922642413109972014-03-13T16:20:49.334-07:002014-03-13T16:20:49.334-07:00Well....it seems clear to me that the only way to ...Well....it seems clear to me that the only way to settle all of this in a manner that is both manly and civil, is to agree upon a meeting at dawn, armed with French Dueling pistols and to be engaged at 20 paces. <br /><br />-- Seconds are required to be duly fit in order to remove their wounded and/or dead.Anonymoushttps://www.blogger.com/profile/12843079683421554222noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-44523673716838924632014-03-13T15:35:45.236-07:002014-03-13T15:35:45.236-07:00Nice write up Nick. I can relate to those telepho...Nice write up Nick. I can relate to those telephone poles to the chest you describe. However, I left that fight a long time ago....just wore me down and wasn't healthy for me. Lois and I were very good friends. Her and Frank came to Utah for a little skiing several years ago and I missed the chance to sit with her....I regret that. I was crushed when she passed. She was the first person I met who could relate to what Tricot was doing at the time. Anyway, you're doing a great service. Continue as long as you like, take a break or call it quits when you lose the passion. Thank you for allowing me to be a small part of all of this. Take care brotherAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-49334452991406326772014-03-13T15:11:51.144-07:002014-03-13T15:11:51.144-07:00Breathe Nick, breathe!! You have a wonderful, inf...Breathe Nick, breathe!! You have a wonderful, informative and interesting blog going on. You are not here to tell all MM patients what way to go, treatment to take nor what doctor to see. I have been reading this blog since my husband Jeff was diagnosed soon after you. People reading need to realize you are another source of information THEN, go your own way!! We have. Keep up the good work!!kathyhttps://www.blogger.com/profile/02514397109071393914noreply@blogger.comtag:blogger.com,1999:blog-5398956932575790.post-47379243588814133802014-03-13T13:56:10.850-07:002014-03-13T13:56:10.850-07:00Nick, you are dealing with human nature here in cy...Nick, you are dealing with human nature here in cyperspace.. Cancer can bring out the best and the worst in us. Evidently, you have heard from some of the worst in the past few days. People can be extremely terrritorial about where they receive MM treatment and even the specialists they see within said cancer center. I admire you and Pat K. for your honesty, humility and good humor in laying it all out there for us. Don't let the naysayers get to you. Put on your Teflon coating and let it just run off! LoveyLoveyhttps://www.blogger.com/profile/02232366061495826513noreply@blogger.com