Tuesday, November 3, 2015
How I Move On
Anonymous said...
Hi Bob,
I was diagnosed with Marginal Zone NHL a little over 2 years ago and had RCHOP off the bat, because I was really sick (in ICU for 2 weeks, several blood transfusions etc) followed by 2 yrs of Rituxin maintenance. I'm sorry if this is off topic, but I was wondering how the news of Senator Fred Thompson's death hit you. He was diagnosed with Marginal Zone Lymphoma 10 years ago, had radiation, then eventually was treated with Rituxin and went into remission for several years. I don't know about you, but every time we lose a public figure to NHL, specifically Indolent NHL, it brings me right back. Thank God for blogs like yours that focus on all the new treatments etc. However, situations such as Thompson's death make me realize that sometimes, we do run out of options...
8 comments:
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Thank you so much Bob. I read your blog regularly and it helps so much. Marginal Zone is rare, so it is often lumped together with Folicular Lymphoma, as that is the most common of the Indolent types. It follows a similar clinical course, the same treatment stategies are used etc.,which is why your blog is so helpful. I've been in remission for 2 years now, have just finished maintenance and, like you, think about it every day, but don't make it define me. I am 47 yrs old now, have 2 teenage boys, and plan to be around for a long time. When I was diagnosed, I had no idea what the treatments were and did not have the time or opportunity to get informed as things happened too quickly. If or when it comes back, I will be much more informed and aware of my choices and there is alot of comfort and strength in that.
Be well,
Lilly - November 4, 2015 at 10:29 AM
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Thank you for this blog. I get so much from reading it. Hearing about Fred Thompson dying from his indolent lymphoma really hit home. That said, your latest blog about hope is comforting.
Can you share a link to your online support group? I joined a FB group, but they are all praying to God, and I'm an agnostic.
Thank you again.
FNHL, grade 1, stage 4 W & W - November 4, 2015 at 6:27 PM
- sumita sofat said...
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- November 5, 2015 at 5:47 AM
- Popplepot said...
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Great post Bob so true in everything you say, keep up the great posting. I'm in full remission after ritux monotherapy diagnosed May 2014, I always think long remissions = closer to cure let's all be positive everything is possible nothing is impossible regards chris from Belfast Northern Ireland
- November 5, 2015 at 5:07 PM
- Jurup said...
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Thank you for your great blog and blog posts. I have enjoy your balanced, clear writing on the subject of the disease and its consequences. Wanted to share this which I think might be of interest: http://www.hematologynews.com/specialty-focus/indolent-lymphoma/single-article-page/new-therapies-finding-their-place-in-management-of-follicular-lymphoma/ed43e7b4e930f6fdc4bf9b2e4f3f6125.html
Best
Jacob - November 6, 2015 at 6:21 AM
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Thanks, Bob, for a great post. Just read the article linked in the comment above which was written by Andrew Zelenetz, M.D., former head of Memorial Sloan Ketterimg's lymphoma service - another lymphoma rock star. I see another doctor in the same department every 6 months. Still watching and waiting after 4 years.
- November 6, 2015 at 12:25 PM
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Thank you Bob and Anonymous. Having to investigate into Senator Thompson's after hearing it was lymphoma has stuck with me and I cannot shake it. I was diagnosed with follicular lymphoma in May 2013 at age 56. After about 18 months of W and W, I decided to start rituxan infusions. Within two weeks the lump in my parotid gland was visibly smaller and after the initial four weeks everything was gone... the parotid lumps and the abdominal sites. I have another year of maintenance, but worry about the arbitrary two year cycle for maintenance. What then??Even though we had different lymphomas, the Senator's rituxan history is similar to what I am doing. His ten year survival freaked me.
I came across this blog entry today. You always think you are the only one and no one understands!! Finding this post today, made me feel better to the point I am teary eyed. BUT they are good tears, tears of relief. Thanks.
Anonymous NY - November 8, 2015 at 3:08 PM
- Mike said...
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Thanks to Bob, Anonymous, and everyone who contributed to this discussion.
My dx in 2009 (it was suspected and tested for in 1999-2000, and in retrospect, clearly present in 2004) was SMZL bordering on FL, or maybe visa versa. In any case, indolent NHL that caused me autoimmune issues AIHA/ITP, with the prematurely destroyed cells creating a very enlarged spleen. Didn't help that the spleen itself was full of lymphoma.
I did Rituxan, followed by R-maintenance, most recently 36 months ago. Having 20 Rituxan treatments took a toll on my immune system (IgG), and I am somewhat dependent on IViG now, a couple of times a year. Next IViG on December 2nd.
In retrospect, I wouldn't have done anything differently, and I will use Rituxan again when the need arises. The alternatives of splenectomy, chemo, or long-term steroids are thus far things I've been able to avoid. I do keep a close watch on clinical trials and potential off-label treatments.
As for Senator Thompson, I'm not sure we really know what happened to him. Yes, 10 years survival is short. One of the abstracts to be presented at this year's ASH reveals that those who had a good response to their first treatment for FL/indolent had average survival of 32.6 years. Amazing as that is, there's still lots of work to be done, for those less fortunate.
Thanks,
Mike - November 24, 2015 at 9:21 AM