Hello. I found out I have SLL/CLL earlier this year at 31. I had Rituxan treatment shortly after since I have neutropenia I can't seem to shake. I will save this for another post.
My lymph nodes are visible but not huge yet. Since I have 11q I have read it can become a bulky disease. Not sure if they mean months/years/decades...
I need some advice and points of view on a matter:
Over the past months I have become more fascinated with leukemia and applied for a job to help in clinical research. It is a coordinator/data position in bone marrow transplant. It is starting to look like I could get the job. I am debating whether to tell the physician I work under about my condition. I am sure she will spot my nodes sooner or later and express concern. I do not want to lie or feel like I have to hide them. Also, I have no idea if I would have to quit 5 years from now, a decade, or six months from now if I need serious treatment. To be honest any other job I wouldn't question keeping it to myself. This seems different... thoughts?
You haven't shared where you live, which may be relevant, because some countries have legislation in place to prevent discrimination on the basis of health conditions. Though if you weren't offered the position, it would be nigh impossible to argue that your CLL was the reason.
I'd recommend investigating the organisation to determine how they treat their employees, as that may help you decide whether or not to disclose. It may be that they appreciate having employees that have the kind of passion for their work that you would bring. Thankfully the relevance of bone marrow transplants is diminishing with CLL, though you do have age on your side for this option, should your CLL ever get to the stage where existing treatments become ineffective.
With respect to your CLL treatment, I'm rather surprised to hear you were given Rituximab monotherapy because you were neutropenic. Chronic neutropenia is not a trigger for starting treatment, though perhaps because of your age, your specialist decided on this off label use. You do face the matter of losing out on a potentially long remission if you would have done well on FCR, because you're selecting out CLL cells expressing CD20 and are unlikely to respond as well to any treatment or treatment combination with a CD20 monoclonal antibody, such as Obinutuzumab/Gazyva, which is more effective than Rituxan. I've been neutropenic since diagnosis over 9 years ago and only recently was started on Filgrastim, after being admitted to hospital with febrile neutropenia. I had the option of early retirement though, which isn't available to you at your quite young age to have CLL.
Neil
I live near Washington, DC.
My neutrophils had been down to about 0.20 for a few months. I had not gotten sick except for a reoccurring eye infection. Almost two months out from Rituxan and last neutrophil count was 0.50. Not sure if it was worth it if it doesn't get much higher. I realize Rituxan can cause neutropenia too. My local oncologist and one at Johns Hopkins discussed it and thought it would be a good idea so I went along with it. I think the concern is that I cannot get chemo of any sort if they can't keep the neutrophils up. They suspect auto-immune neutropenia so growth factors could be out of the question since the neutrophils are getting annihilated in my bloodstream by my immune system.
I have an appointment coming up at NIH for a free consult and to get registered in their system for possible future clinical trials I could become eligible for. Hopefully their advice will be useful.
Thanks for thoughts!
Pleased to hear that you are going to the NIH. A G-CSF drug like Neulasta or Filgrastim is given during treatments (all of which can cause neutropenia) to boost counts above 1.0, particularly before the next cycle of chemo treatment if the bone marrow doesn’t recover sufficiently.
I should have gone to NIH earlier but since my family had ties to Johns Hopkins (my mom was a cancer research nurse before retiring) we went there. Fortunately, there are a lot of good institutions around here to get advice.