Recent SLL/CLL Patient Question: Hello. I found... - CLL Support

CLL Support

20,831 members35,678 posts

Recent SLL/CLL Patient Question

DriedSeaweed profile image
11 Replies

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?

11 Replies
AussieNeil profile image

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.


DriedSeaweed profile image
DriedSeaweed in reply to AussieNeil

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!

AussieNeil profile image
AussieNeilAdministrator in reply to DriedSeaweed

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.

DriedSeaweed profile image
DriedSeaweed in reply to AussieNeil

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.

Cammie profile image

You may not like what I am going to say here Seaweed!

My view is that you should be open and honest with your prospective employee.

You must think of two things.

Firstly employees are constantly complaining about not being treated correctly when they are suffering from a chronic illness which affects how they do their job. So in a spirit of fairness why would you put yourself in a position such as this and basically misrepresent the facts which could lead to instant dismissal?

Secondly this position is supporting research/treatment for patients in a similar position to you, in fact, as Neil says maybe they are even in a worse position because they , unlike most of us, need extensive intervention of a bone marrow transplant. By not being honest you could be putting the administration of this organisation at risk of losing you when or if treatment is required . Is that fair on the patients you would be helping by taking this position?

I appreciate fully that we are all human and anyone in this position could, indeed, get sick but your cll means the likelyhood of this is greater.

You may be surprised if you are honest and the organisation may be keen to have someone with your knowledge on board?

If not then at least you will have done the right thing on behalf of yourself, the patients your would serve and the organisation.


DriedSeaweed profile image
DriedSeaweed in reply to Cammie

Thanks for the advice. I will meet with the supervisor if the opportunity comes to fruition before anything is final to give them some time to think about it.

AdrianUK profile image

Honestly, I think if I was you I’d be tempted to take the middle ground. Go for the interview. Don’t mention your health. Wait for them to offer you the job, then be open about it at that point if you feel like it. You are not obligated to reveal your health situation up front. But that’s just me.

Cammie profile image
Cammie in reply to AdrianUK


Under employment law errors and omissions in applications can lead to problems. Certainly from the employers side and there is a duty from the prospective employee.

What we have to remember is if the job was offered both time and expense have been invested by both parties and other best qualified prospective employees may have been refused and gone on to different employers.

My own view is that what you suggest is unfair on the prospective employer. If it was the other way round and the prospective employee was given duff info and something was brought up after the job was secured this would certainly lead to a problem and maybe even a tribunal where the employee could take the employer to task for compensation.

Honesty is the best policy in my view so that we can sleep soundly.

Just saying.


AdrianUK profile image
AdrianUK in reply to Cammie

Not advocating lying. It really depends on the application form. In the uk I don’t think employers are typically allowed to ask about health etc before a job offer is made tho that can depend a bit on the job itself.

DriedSeaweed profile image

I agree. I would rather feel like I am being hired because of my merits then discuss it with them before I take the job so there would be no hard feelings or surprises down the road.

SanGirl profile image

You are under no obligation to disclose. In fact, it can result in job discrimination. I think you shouldn't disclose.

You may also like...