tag:blogger.com,1999:blog-781671514856579833.post7476386029238653456..comments2024-03-27T08:59:24.243-04:00Comments on Lympho Bob: Watching and Waiting is OK (And Now It's Time to Move On)Lymphomaniachttp://www.blogger.com/profile/17519575154615844854noreply@blogger.comBlogger6125tag:blogger.com,1999:blog-781671514856579833.post-38820360422412159192015-06-19T12:55:49.228-04:002015-06-19T12:55:49.228-04:00Becky,
Thanks so much for reading. I'm happy t...Becky,<br />Thanks so much for reading. I'm happy to hear that you were able to manage Watching and Waiting so well, physically and emotionally, especially since you were diagnosed at such a young age (and I thought 40 was young). And congratulations on your daughter! That's really wonderful. I hope your watching and waiting continues for many, many years.Lymphomaniachttps://www.blogger.com/profile/17519575154615844854noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-43499586554610525142015-06-16T17:54:59.107-04:002015-06-16T17:54:59.107-04:00Hello,
I wanted to share my experience in was diag...Hello,<br />I wanted to share my experience in was diagnosed at 21 with NHL follicular, I had low level bone marrow involvement and many hot spot nodes on the PET scan both above and below the diaghphram . However as I didn't exhibit B symptoms I was put on watch and wait. .....fast forward 7 years I recently went to see the haematologist who has moved me onto yearly appointments so I'm a firm believer in watch and wait. At my initial diagnosis I was told my haemo took my notes to a conference in London and they voted to keep me on W and W. Emotionally it was difficult at first but now I know I probably stand a better chance in future should the lymphoma play up. Ultimately watching an waiting has enabled me to have a daughter something that may have been affected by chemo. So lympho bob I'm so grateful to read your blog and your insightful info you should be proud that you help answer many questions from various ppl. Becky xAnonymoushttps://www.blogger.com/profile/08521181331390933740noreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-55472833875564916192015-03-10T15:55:40.808-04:002015-03-10T15:55:40.808-04:00Move on to what ? treatment!
I listened to a podca...Move on to what ? treatment!<br />I listened to a podcast by John P. Leonard<br />He said most of the work on watch and wait has been done in Europe.<br />Specifically the UK because of their system.<br />Does this imply lack of funds ?<br />My UK Oncologist is basically monitoring LDH levels and told me they were normal yesterday.<br />He gave me a physical exam.<br />I have some enlarged nodes 2.5cm on the right of my neck which appeared just over a year ago and on the left one around 5cm which popped up less than 6 months ago.<br />He assures me this is not progression and I should stay on watch and wait.<br />It feels like playing Russian roulette and I get this feeling that transformation may be his benchmark for treatment.<br />We put our trust in our health professionals I'm hoping mine is not unfounded.<br />Steven Clarksonnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-6170424926932841462015-03-09T22:44:09.581-04:002015-03-09T22:44:09.581-04:00Interesting thoughts in this article: Is Observati...Interesting thoughts in this article: Is Observation Dead in Follicular Lymphoma? No, But the Apoptosis Pathway Has Been Activated.<br /><br />http://www.jnccn.org/content/13/3/363.full.pdf<br />Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-53874212932311222432015-03-06T16:55:01.094-05:002015-03-06T16:55:01.094-05:00Thank you. I feel the same. I think to answer thi...Thank you. I feel the same. I think to answer this question in a meaningful way requires a study that considers the underlying biology of FL (which varies). That would take a large randomized trial comparing w&w to vitamin R in asymptomatic FL ... with pre-treatment and on-relapse biopsies using latest tools (next gen sequencing ... now affordable) to see if features of the tumor predict benefit for either approach. Then we might have a rationale way to guide therapy ... with a test. It might not answer the question with 100% certainty but it would also inform about targets and how the FL evolves over time (with and without treatment). Would patient participate in such a trial ... ? Karl Schwartzhttp://www.lymphomation.orgnoreply@blogger.comtag:blogger.com,1999:blog-781671514856579833.post-37418250640524552982015-03-02T20:41:24.901-05:002015-03-02T20:41:24.901-05:00Bob, once again you make wonderfully good sense!! ...Bob, once again you make wonderfully good sense!! Thanks for helping us watch and waiters relax and move on. Ginnyhttps://www.blogger.com/profile/14665892124780350869noreply@blogger.com