Follicular Lymphoma Vaccine a True Novelty

Ross

Thank you for your posts.

As a new member I have been reading past entries. I especially appreciated your comments on chemo brain. My chemo was Rituxan with Decadron. The side effects of Decadron were quite unpleasant for me.

http://www.chemocare.com/bio/decadron.asp

I am concerned to read about possible side effects of Rituxan. They have scheduled me for 3 more rounds of 4 weekly infusions, six months apart.

I tried clicking on your name, but it says I do not have permission. Is there a protocol?

Thanks again,

Leon-
Thanks for the kind word. As for the 'permission' thing, it happens when I try to access profiles as well, I just emailed the site's owners about that because I don't quite get that either. I'll let you know what I learn.

You're right about splenic marginal-zone lymphoma being rare- about 1% of typically 'indolent' NHLs, and only fairly recently described in the medical literature. I think the average age of patients at diagnosis is around 68. Now, you already went through Decadron, is that right? Did you have a splenectomy as well? As recently as 2003, a paper in the Lancet Oncology (doi:10.1016/S1470-2045(03)00981-1) was saying that a splenectomy was considered the first line of treatment, an approach that seems to have fallen slightly out of favor. Whatever the case, I don't think there's a standard treatment modality in place yet for SMZL.

What are your specific concerns about Rituxan? Not that I blame you; monoclonal antibodies represent the cutting edge in immunotherapy in cancer treatment, as well as treating other diseaes (Rituxan's being used off-label to treat other diseases), but it's still so early and there are dangers we're slowly finding out about, such as PML, the often fatal brain virus I blogged about a short while ago. But even those links are tenuous. I think the most frightening thing is that, were it not for things like the RADAR project I mentioned in the blog, we wouldn't even have known about PML and Rituxan, or at least it would have been much longer before we did.

Yet like so many new therapies, you have to balance risk with reward and reach your own decision on the matter, with the consult of your doctors. The key, I think, is making an informed decision as opposed to being led down certain paths by health teams with too much to do and not enough time in which to do it.

I'm not sure about the SMZL community here, but I might recommend you check out a very extensive thread on SMZL from 2006 at the LLS, and there may be newer ones as well, but this one discusses a variety of therapies and outcomes among different patients.

Finally, sorry to hear about your reaction to Decadron, but it's not surprising. The potential side effects of such a corticosteroid are absolutely brutal, and the range of therapeutic benefits so broad. I have to say, the PDR I use (granted it's from 2007) indicates that, with regard to lymphomas and leukemias, Decadron is palliative only- you know, pain management and relief. Meanwhile, this large retrospective study from the journal Blood follows over 300 patients with SMZL and none of them received a corticosteroid.

Ross

I was diagnosed with SMZL in October 2006. I am a 33 year old female and the lymphoma was found accidentally after a doctor discovered unexplained hemolytic anemia. That too was accidental, since I never had any symptoms. I ended up having a splenectomy in May 2007, mostly for diagnostic purposes, but it did seem to resolve the hemolytic anemia. I went on to get pregnant last year and currently have a beautiful 4 month old baby girl.

I can't add much about treatment, etc. because I am on watch and wait. My last CT scan was in April and was clean. I just thought I'd say hello so that you know that there is at least one other person in the SMZL community here. I also recommend the LLS message boards, although they seem to have lost a lot of people since the "upgrade" earlier in the year.

Best,
Jessica