10 replies to this topic

[JMGrad]

Good morning everyone,

 

I NEVER thought I would be writing about this but today is the day! I work in a Level I trauma center as a X-ray tech. We rotate through the different areas ER, OR, Portables, Ortho, Main and that was never a problem for me. In fact I welcomed it - it was a change of pace weekly! The other techs are still rotating and I was informed this week, not really informed - left to find this myself on the schedule, that I would be returning to the main hospital to resume rotating.

     When I was diagnosed in Jan 2012 I told my immediate supervisor (whom I trusted) and he placed me at an outside clinic away from the hospital itself to keep me away from all of the contact patients we see. And it's not basic level MRSA stuff. We have from necrotizing fasciitis to TB to possible cases of Middle East Respiratory Syndrome Corona Virus. We have changed supervisors multiple times since being diagnose and I know that this current one knows my sitiation but evidentally doesnt care. The argument could be made "Well, if you wear you PPE correctly it won't be a problem" and ok. I understand that. BUT there are MULTIPLE cases of pt's either being diagnosed with one of these contact precautions AFTER they have gone through the ER/been admitted or patient's with lazy nurses who don't inform us techs what we are dealing with. Or other techs not wiping down their equipment correctly. I just don't feel like I can take that chance. Even though we might be "undetectable" aren't we more susceptible to illness?

     So, I contacted my union and am following their instructions. Start with my immediate supervisor and if that doesn't work they will get involved. They said I have a pretty tight case. I'm just sad that it has to come to this. I even went so far as looking into disability retirement and it says "you are considered disabled if you are unable to perform useful and efficient service in your position because of disease or injury."  I CAN perform my job and I can perform it well. I just don't understand why they can't leave me where I am. Am I wrong?

[pammartin]

I am sorry you are dealing with additional complications. Having a diagnosis is difficult enough without life's curve balls. Hoping you find a positive solution to your situation, takes care.
Pam

[MabelRae]

You just asking for whats right, keep at it.

wish you best.

[LivingWellWithCML]

Here is a perspective that might be helpful in your journey.  The CML specialist I see encourages chronic-phase patients with optimal treatment response to consider themselves as "functionally cured".  If a patient has normal WBC and neutrophil counts and maintaining an optimal cytogenetic response (CCyR), then that patient is no more susceptible to illness than a non-CML person (assuming no other health issues that could be present).

 

Are your CBCs normal?  Are you at PCRU?

[JMGrad]

No. I am not PCRU - never have been. I took a 10month break from Sprycel to have a baby so I'm back at trying to acheive that. My neutrophils are always low as well.

[Trey]

CML patients have roughly two phases of potentially greater susceptibility to communicable diseases.  The first phase is from before diagnosis to "normalization" of the blood cells, meaning they go from mostly leukemic to mostly normal (non-leukemic) cells.  During this phase the person could possibly be slightly more susceptible to other diseases.  That is because the WBCs might be less functional due to their mostly leukemic nature, and the WBC can sometimes go very low during this time of early treatment.  Leukemic white blood cells may not work as well as normal ones, although that is not absolutely true.  As treatment progresses the white blood cells become generally normal ones instead of mostly leukemic ones, so the patient is no longer more susceptible to communicable diseases than anyone else.  Even if we have somewhat low WBC during treatment, the immune system is still able to respond well because those cells are generally normal WBCs.  The low counts are more due to the TKI drugs than the CML at that point. 

 

Overall the CML patient who has responded well to TKI treatment (certainly CCyR or better) is no more susceptible to communicable diseases than anyone else.  The best test would be if you are more sickly now than a couple years prior to diagnosis, then you might have a point.  If not, then I doubt that your concerns are warranted.  As for me, I believe I am less susceptible to communicable diseases since responding to TKI treatment than I was in the years before diagnosis.

 

Having said all of that, if someone is in contact with disease carriers more often than others, then their risk is higher.  But the CML is not the issue, only the contact.

[JMGrad]

I've been reading that our immune systems repond well after being "cleaned up." What scares me is how my body reacts now. Like, a cold before CML would be gone in week. Now it lingers for almost a month. A bug bite now will cause a BIG red splotch that just doesnt go away. I guess my concern is recovery time? It just takes me so long to get over the smallest things. 

[gerry]

First thing - congrats on the new baby.

Gleevec made me react to insect bites more than normal, I always had to have some antihistamine on hand. Stings/bites would be more inflamed and hang around for weeks. 

[Antilogical]

Trey's post pretty much summed up what my onc told me: Although my blood counts run low, I can essentially be treated as if I have a "normal" immune system.  When I'm neutropenic, he tells me to avoid salads & uncooked berries in restaurants.  (Who knew how filthy those foods are?)  Otherwise, no problem.  He is more worried about the nasty zoonotic diseases I might contract as a result of volunteering at a wildlife rehab center, but he says I'm no more likely to get sick from them than any other volunteer, if I take the appropriate precautions.  So... shots for tetanus, rabies, etc are all up-to-date, and I've cornered the market on latex gloves.

[Trey]

The skin issues are a different mechanism of action.  The TKI drugs interfere with rapidly growing cells, of which skin, hair, nails, mouth are most affected.  This is due to the off-target kinase inhibitions such as c-Kit and PDGFR. 

 

Recovery from colds can be unpredictable.  You may indeed take longer to get over some of them, but maybe they are different forms of cold viruses.  As you know, a "cold" is not one single thing. 

 

Overall I would not want to see you or others think of themselves as weak and susceptible.  It is just not an accurate picture of life as a CML patient.  Of course we can be more tired and feel less spry, but the question is about how well our immune system works, and it works just fine.

[tiredblood]

JM Grad, I certainly understand your concerns.  Being a nurse, I know there are times when even with PPE, a patient infected with a communicable disease can make unanticipated moves or behaviors that would potentilally expose us to dangerous pathogens, even those our immune system isn't capable of warding off.  Even then, there are the patients that do not disclose their diagnosis or have yet to be diagnosed. As far as nurses go, I am required to be able to function in my job with regard to my health.  At any time I cannot perform the functions of the job within the parameters spelled out by the governing body in which I am licensed, I will basically be without a job.  This concern comes to mind with me at times too after being diagnosed with CML.  Even with PPE, there is still potential for pathogens to enter our body.  I know in nursing, I can work in certain areas where I might encounter less patients with infectious diseases, thus reducing the risk of contracting a disease.  Honestly, if I were in your position (but as a nurse), I would think the company could place me anywhere they wanted to and I would have no recourse.  I can only speak as a nurse though.  For example, even with my major molecular response, I'd probably not consider working in a correctional institute as a nurse, where I may have considered it prior to CML.