tag:blogger.com,1999:blog-781671514856579833.post6969679459826603170..comments2024-03-27T08:59:24.243-04:00Comments on Lympho Bob: 9 YearsLymphomaniachttp://www.blogger.com/profile/17519575154615844854noreply@blogger.comBlogger10125tag:blogger.com,1999:blog-781671514856579833.post-59831095305654688222017-02-22T14:49:04.353-05:002017-02-22T14:49:04.353-05:00Thanks for the comment!
If you've been reading...Thanks for the comment!<br />If you've been reading for a while, then you know how I feel about Dr. Cheson. I've never met him or anything, but he's done some great work, and I love his positive attitude.<br />I've read some about 24 month remissions being a good sign, though I haven't seen anyone use the word "cure." Even if Dr. Cheson says it, I'm still a little skeptical. Not that I'm complaining about being 7 years out from my last treatment. But I'd like to see more long-term, wider data before I feel that confident about it. But it's definitely a good sign.<br />And yes, I agree: Good luck to us all, and let's keep fighting for better funding, better treatment, and better insurance. That's all worth repeating, and so is the Peace and love!Lymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-52946126773246779202017-02-22T10:21:28.894-05:002017-02-22T10:21:28.894-05:00Congrats on 9 years! I'm not sure where I am f...Congrats on 9 years! I'm not sure where I am from when I first presented. I wanna say it was Oct 2009, but I can't be sure. I am sure that the greatest thing that happened to me was coming to DC and lucking into Dr. Cheson. He immediately stopped any scans and even when I presented, he put me on watch and wait for a good while until the disease accelerated. I did BR--his preferred first line treatment post watch and wait--and had immediate and now durable (3 years) complete remission. Here's what he told me: <b>2 years</b> post-treatment is now the marker. If one relapses after BR before 2 years, then outcomes become tenuous; if, however, one goes beyond two years, then durable remission is extremely likely, and then used a word I have <b><i>never</i></b> heard him use: Cured, even. I had never heard him use that word before, but he said much has changed recently. I was so flabbergasted I didn't even ask him where that data came from, but he said that when we are talking about 15 - 20 year remission rates, at what point do we not say "cured"? So he seemed to suggest that relapse before 2 years means difficulties; post-two years means long, durable remissions and maybe even cure. I may have dreamed this. Good luck to all of you, and let's keep fighting for better funding, better treatment, and better insurance. Peace and love!Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-84622424849386850932017-01-19T20:34:53.174-05:002017-01-19T20:34:53.174-05:00LIVING with cancer
Not dying of cancerLIVING with cancer<br />Not dying of cancerAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-55651363791641515942017-01-19T20:22:20.683-05:002017-01-19T20:22:20.683-05:00Congrats on your anniversary. I check for your blo...Congrats on your anniversary. I check for your blog everyday. Hubby was diagnosed almost 5 years ago with stage 3 FL. He had a bad infection, was hospitalized and found a swollen linguinal lymph node. No symptoms yet. We are also watchful waiting. As the years go by its always in the back of our mind, but keep on living. He's one of the fortunate ones since his blood work is good and no symptoms. <br />Thanks for doing all the work finding new articles about FL.<br />The more knowledge helps us.<br />Appreciate couple from Maine.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-25393374070979526992017-01-19T20:20:49.133-05:002017-01-19T20:20:49.133-05:00Thanks, everyone!
BobThanks, everyone!<br />BobLymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-62082644218386266662017-01-17T16:22:28.477-05:002017-01-17T16:22:28.477-05:00Happy anniversary, Bob! You continue to be an insp...Happy anniversary, Bob! You continue to be an inspiration on how to live life fully with cancer. I ditto what Donna had to say about being grateful to have someone like you to be a "cancer nerd" for us. Blessings to you and all who read you!<br />VirginiaGinnyhttps://www.blogger.com/profile/14665892124780350869noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-30090627326324553292017-01-17T13:32:59.136-05:002017-01-17T13:32:59.136-05:00Happy anniversary Bob!
I agree with you.. NEVER di...Happy anniversary Bob!<br />I agree with you.. NEVER did I ever consider myself a victim. When the words "why me" would come to mind, I would quickly follow that thought with " why not me".<br />I love your blog because it empowers us. There is strength in knowledge, and strength in numbers. We are all in this together!<br />Wishing you many many more years without treatment!!!<br />lilly <br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-32222686801392937012017-01-16T05:12:25.724-05:002017-01-16T05:12:25.724-05:00Your 9th diagnoversary is quite a wonderful milest...Your 9th diagnoversary is quite a wonderful milestone Bob. To answer your 'What am I?' question, IMHO you are 'Bob the Blogger'. One who has contributed so much to so many fNHL patients. I/we your readers are avid consumers of your blog. I look at your blog every morning. It is the first source for new fHNL information, and some days, like today, inspiration. I wish you fair winds and following seas in your future.<br /><br />William<br /><br />P.S. - My wife has aggressive fNHL. Diagnosed 5 years ago she progressed after 4 cancer treatments. On March 2, 2016 (her new birthday) she was infused with CAR-T and achieved a complete remission. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-89764733138565165752017-01-15T23:09:03.524-05:002017-01-15T23:09:03.524-05:00Happy 9th diagnoversary Bob!
I am so happy you hav...Happy 9th diagnoversary Bob!<br />I am so happy you have reached this milestone, and, that you take all the time it takes to create this inspiring and informative blog. It's awesome!! <br />I was diagnosed with stage 4 Follicular Lymphoma in 2013 and after 6 cycles of BR and 2 years of Ritux maintenance I was fortunate to reach CR. I especially liked your comment that if you have knowledge you can't possibly be a victim so I read as much as I can. Your blog is an important part of my knowledge gathering, so thank you.<br />Pat<br /> <br /> Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-81569682471536906862017-01-15T13:20:25.275-05:002017-01-15T13:20:25.275-05:00Great blog today!
You put into words things that ...Great blog today! <br />You put into words things that us cancer survivors need to hear. I struggle with that term. I've not had treatment, I don't have symptoms, but I do have cancer. I am a victim of a genetic mutation caused by something. But I don't want to call myself a victim.<br />I always think about cancer every day, and will I need treatment, and how difficult will that treatment be? <br />Thanks for being a cancer nerd for me. <br />Donna.Anonymousnoreply@blogger.com