tag:blogger.com,1999:blog-781671514856579833.post939878538457586100..comments2024-03-27T08:59:24.243-04:00Comments on Lympho Bob: Appointment with a New OncologistLymphomaniachttp://www.blogger.com/profile/17519575154615844854noreply@blogger.comBlogger9125tag:blogger.com,1999:blog-781671514856579833.post-14203295986544908652017-02-21T13:15:13.880-05:002017-02-21T13:15:13.880-05:00Wow, Popplepot -- that's great. Self-advocacy ...Wow, Popplepot -- that's great. Self-advocacy at its finest. Nice that you had an oncologist who was willing to go along with your wishes.<br />And I'm with you on second opinions. They are always worth the time.<br />Stay hopeful.<br />BobLymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-17882487336499648532017-02-21T04:50:58.333-05:002017-02-21T04:50:58.333-05:00My goal bob was to find a consultant that would go...My goal bob was to find a consultant that would go on this journey with me sometimes as the driver and sometimes as the passenger. I'm pretty confident I got that my first consultant wanted to start chemo ( enlarged spleen ) I wanted to try ritux only and found a consultant that would let me try it though didn't believe it would work.<br />I was stage 3 bone marrow involved with splenomegaly, 4 rounds complete response so very blessed. My Doc said I love it when we are proved wrong. That comment brought great relief, a sense of honesty, and a human side we don't often see from Doctors.<br />All in All if you ain't happy with a decision get a second opinion if you ain't happy with your Doc change them. And remember the future is brighter than we could ever imagine never ever lose hope.👍Popplepothttps://www.blogger.com/profile/06647053539132704152noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-55924755196462259852017-02-18T18:33:19.859-05:002017-02-18T18:33:19.859-05:00Thanks, Bob!
Thanks, Bob!<br />Anonymoushttps://www.blogger.com/profile/08229571059035899052noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-31733985434323680242017-02-18T09:25:34.549-05:002017-02-18T09:25:34.549-05:00Romencar Rodrigo,
When he said FL was complicated,...Romencar Rodrigo,<br />When he said FL was complicated, he meant that some types of lymphoma are seeing a lot of success with new treatments. But some of the treatments for FL are seeing mixed results. He used Ibrutinib as an example -- in trials, it was working really well on some patients, but had some really bad side effects as well. He didn't mention any others, but you could probably add the ASH concerns about Bendamustine, and some of the sided effects of CAR-T. But I don't see those as long-term problems, necessarily. My guess is that they can be solved by giving the treatment in a different way, now that the side effects are more clear. (But that's just my non-expert guess, based on what I have read, NOT Dr. V's expert opinion).<br />Still lots to be hopeful about.Lymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-31348822544734823362017-02-18T09:18:29.640-05:002017-02-18T09:18:29.640-05:00Thanks, William. It's interesting -- we all ne...Thanks, William. It's interesting -- we all need different things from our oncologists. Dr. K, the one who recently retired, told me that he has some FL patients who don't want any details about their disease. As long as things are stable, they'd rather just forget about it. I completely understand that approach. We all handle our cancer differently. (Though I'm guessing people reading this wouldn't want to just not think about it.) Dr. V is what I need right now.<br />And I agree -- write down questions! Great tip! And have someone come with you, especially if you know it's going to be a stressful visit. Not only can a friend or partner provide emotional support, but they might hear things that you didn't hear. They can even take notes so you can focus on the doctor.<br />Oncologist visits can really stink. Do what you can to make them just a little bit easier.Lymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-22701117510361383572017-02-18T07:00:19.382-05:002017-02-18T07:00:19.382-05:00Hi Bob.
Sounds like you have a great hematologist...Hi Bob. <br />Sounds like you have a great hematologist - glad you found him. Thanks for the detailed update and your process for evaluating a new hematologist - others will benefit from your analysis. To add to what you said, I'd add that patients should have written down questions to ask in advance of their hematologist visit. <br />WilliamAnonymoushttps://www.blogger.com/profile/03199433584403778258noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-50923530730076350682017-02-17T21:00:32.914-05:002017-02-17T21:00:32.914-05:00Dear Bob. Why the doctor told you FL is complicate...Dear Bob. Why the doctor told you FL is complicated?<br />Anonymoushttps://www.blogger.com/profile/08229571059035899052noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-50713557220306148142017-02-17T15:20:57.659-05:002017-02-17T15:20:57.659-05:00Thanks, Donna. Yes -- a great visit. I was very ha...Thanks, Donna. Yes -- a great visit. I was very happy with what I heard.<br />BobLymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-40519139579299386642017-02-16T23:30:43.202-05:002017-02-16T23:30:43.202-05:00This sounds like it was such a positive visit for ...This sounds like it was such a positive visit for you: yay! <br />I'm looking forward to you sharing ever more exciting information. <br />That G 100 sounds really interesting, let's hope it works ! <br />Thank you for sharing . <br />DonnaAnonymousnoreply@blogger.com