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I have been diagnosed with CLL and in Watch and Wait. How does one know when you are eminently compromised? What is my risk level? How effective has the COVID shots been?

Ask the Lab Scientist Question:

I have been diagnosed with CLL and in Watch and Wait. How does one know when you are eminently compromised? What is my risk level? How effective has the COVID shots been?

Answer: Only an extremely small percentage of those who are diagnosed with CLL/SLL need to be treated right away. In fact, it is much more common to go many years (and sometimes never) before needing to receive treatment. As far as life expectancy, that is highly variable depending on the person and their other co-morbidities. In fact, many CLL experts will tell you that you will not pass away from CLL, you will pass away with it (from something else, just like any other person).

Many hear the diagnosis of cancer, and immediately think they need chemo or need to do something right away. So, waiting and not doing anything can seem counterintuitive. But CLL is a chronic cancer, so treatment is not immediately required. We would suggest that you read this article on our website pertaining to how you will know when it is time to begin considering treatment for your disease, and what symptoms to look for.

That being said, we want to provide you with some suggestions during this time (this is going to be a little long, but includes some great information):

  1. Please make sure you are seeing a CLL expert. CLL is a rare disease that very few general oncologists have expertise in treating. You can find a list of those experts on our website here. There are several studies which show that better outcomes (and longer life-expectancy) is directly related to having a CLL expert physician manage your care.
  2. The “Watch and Wait” period of this disease can be extremely stressful and many report increased levels of anxiety, as they are continually wondering when their disease may progress. Please consider joining one of our support groups if you haven’t already. CLL can be an extremely difficult disease to understand, and the multiple novel therapies to choose from can be daunting. Reading through our website a little at a time and becoming part of a support group where they discuss various topics directly related to the disease can be extremely helpful for you to be empowered to become your own advocate when it comes to receiving your best care. There are now almost 40 support groups to choose from, which all meet virtually due to COVID, so location is no longer a barrier. Just choose the one nearest you.
  3. Please do not agree to any sort of treatment or therapy until AFTER your CLL doctor has performed all of the necessary testing (FISH/Flow Cytometry, etc.) and knows all of your genetic markers prior to making a decision on which treatment you should receive. We still hear reports of some physicians prescribing chemotherapy for patients on a regular basis, which is no longer the gold standard of care for most with CLL (there is a very small percentage of young and healthy patients with specific genetic markers for which chemotherapy may still be appropriate). Please read through all of our Test Before Treat information so you can gain knowledge about this very important piece of your care. You can even print out this one-page summary document and give it to your physician for reference.
  4. Hopefully, your physician has discussed your increased risks surrounding COVID. By just having the diagnosis CLL, your immune system is already compromised (regardless of whether or not you are on any sort of treatment), and infections of any sort are one of the biggest concerns. We have a plethora of articles in the COVID-19 section of our website that you can read through. While antibody level testing is not recommended by the CDC, we are immunocompromised. What we don’t want is for CLL patients to be walking around thinking they have some level of protection if they do not. You can go to any LabCorp location and have your antibody levels tested to see whether or not you had a response to the vaccines or not. You just need to create an online account to order the test for yourself and the cost is $10. Here is their link for more info.