Immunology Consult? (New here)

[MiloG]

First time posting...I was diagnosed w/ SLL/CLL in 2004, treated with 6 rounds of Bendamustine/Rituximab in 2012 and am presently in remission. Never was I informed that I have a reduced response to any vaccines due to CLL-I didn't know until the studies from Israel were published in 2021. I have painstakingly protected myself from Covid these past 2 years but am now highly anxious about navigating safely in a world where I will no longer be protected by others wearing masks. My oncologist will not order antibody tests and I do believe that interpretation of those tests is difficult/inconclusive with CLL patients. However, it is very frustrating to have no idea how "efficient" my immune system is - I am thinking that a consult with an immunologist might be helpful. Does anyone else have an immunologist on his/her team? Has it been helpful? What questions may be helpful for me to ask? Thank you!

[HopeME]

You qualify to get an analysis of your vaccine response through the Leukemia and Lymphoma Society. There was a post about the process a few days back. I’m actually taking a break hitting golf balls at a driving range. If I wasn’t I’d link to the post. Click on my name and look at my responses and you will find the thread about the study. I have SLL and was also treated with BR first round. I found out through the study that I had a very robust response to the vaccinations (I had 4 Pfizer’s). Don’t give up hope.

Mark

[Granna45 in reply to HopeME]

I actually found Evusheld at the office on an immunologist and am now his patient. It was maybe the best move I've made in my journey so far as he is giving me information about my immune system that my oncologist team at a major cancer center had not given me. They are concerned with monitoring and treating my cancer and are quite frankly worn out with questions about Covid, antibodies, vaccines etc. The immunologist has ordered more antibody testing for things like pneumonia, shingles etc. that I had vaccines for in the past. I feel really fortunate to have an immunologist in my court now.

[MiloG in reply to Granna45]

Thank you for responding to my post. I saw this great video put out by LLS called "Abnormalities of the Immune System in Cancer Patients" which convinced me of the value in consulting an immunologist. I have an appointment tomorrow! I just feel I need a "fuller" picture. I am much encouraged by your post!

[HopeME in reply to Granna45]

I agree Granna getting involved with an immunologist is a smart move. I’ve thought about it myself. Patients often rely too much on CLL Specialists for related health problems. CLL doctors are a crucial part of our care teams but sometimes we rely upon them too much forgetting about the specialized nature of their services.

Best

Mark

[MiloG in reply to Granna45]

So, I had the consult today with the immunologist and I agree with Granna45, it was great!! I learned so much! I had a host of antibody tests done, like you, for pneumonia, tetanus, shingles, etc. I have been so focused on my B cell dysfunction: the MD balanced my perspective by addressing other parts of the immune system that have been working well for me. I am encouraged that I can (safely) come out of the intense hibernation I have been in. It feels good to have another ally in this CLL journey. Thank you all who have responded to my post!

[MiloG in reply to HopeME]

Thank you, Mark. I see the post you are referencing. I, like you, have Trisomy 12, mutated SLL/CLL. I, too, have had 4 vaccines, 2 Pfizer, 2 Moderna. I appreciate your response and I will look into the LLS study.

[HopeME in reply to MiloG]

I have unmutated Trisomy 12 so you are in a better place than me with mutated disease. I agree that consulting with an immunologist is a smart thing to do. If he / she can conduct the blood tests that would great. If not, you can turn it around with LLS in a week. I was pleasantly surprised with my response and I hope you get the same excellent response!

[lankisterguy Volunteer]

Hi MiloG,

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You have gotten great advice from HopeME and Granna45

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The link to the LLS - Ciitizen study healthunlocked.com/cllsuppo....

or directly: ciitizen.com/lls/?utm_sourc...

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And probably the best advice is to wear an N95 respirator mask whenever you are around people that may be infected but not symptomatic. Don't do anything that requires removing your own mask (eating, drinking, hair care, dental, etc.) unless the persons nearby are wearing N95s see healthunlocked.com/cllsuppo...

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Len

Exposure times for COVID infection with various mask combinations

[MiloG in reply to lankisterguy]

Thank you so much for the link, Len! I signed up for the LLS - ciitizen study and within 30 minutes had a response and an order for bloodwork which will be done tomorrow. I value participation in studies as it can only benefit all of us. I am grateful to this site for the information I have received!

[HopeME in reply to MiloG]

In my case Lab Corp turned around the blood work in about 2-days. I think I had the blood draw on a Friday morning and had the results on a Sunday morning. I agree participating in these studies is how the medical professionals solve vexing questions about diseases.

Please let us know how your results come back.

Thanks

Mark

[Phil4-13]

MiloG, I have never had my vaccine effectiveness tested. I judge the strength of my immune system, by my energy level, am I bruising more easily again, my appetite and my motivation to get tasks done. This may not be scientific, but, well, maybe it is to a point. I'm not getting colds or sinus infections, wounds heal pretty quick. I simply won't rely on a test to determine if I'm well. I keep my mask with me always and wear a smile that at least I can feel under my mask when someone else does not wear one. I look at that as victory over stress. Stress is so destructive to our health. 🙂 Sandra

[MiloG in reply to Phil4-13]

Hi, Phil4-13! I think you illustrate an excellent point - we ultimately choose our own approach to coping with our disease and minimizing the stress of living in uncertainty. 🙂

[BeckyLUSA]

Welcome to the group! Some questions for you. Did your insurance cover this? And/or are you on Medicare? Did another MD refer you? I have been wanting to do this but didn’t know if I “needed” to do this and if the cost would be covered. BeckyL USA

[MiloG in reply to BeckyLUSA]

Thank you for the welcome, Becky! I am on Traditional Medicare, (not Med Advantage), so I did not need a MD referral. I honestly don't know if it will be covered and didn't look into this prior to going to the appointment (it did not occur to me to do it, lol!). When the immunologist was entering some notes, he did say "OK, that ought to make Medicare happy", so maybe it will??

[lankisterguy Volunteer in reply to BeckyLUSA]

Hi BeckyLUSA,

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For both your and MiloG - if you ask any new doctor's staff if they "accept Medicare" and the answer is yes, all your treatment costs will automatically be submitted to Medicare and the doctor will receive 80% of a greatly reduced amount. You or your Medigap (Medicare Supplement Insurance) will be responsible for the remaining 20% of that reduced amount.

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The only times those rules do not apply is if the doctor or facility does not accept Medicare OR you sign a paper form specific to that treatment warning you that Medicare will not cover that treatment. The form must be given to you before the treatment is started.

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Len

[BeckyLUSA in reply to lankisterguy]

Thank you lankisterguy! I love my Medicare Supplement.

[MiloG in reply to lankisterguy]

Thanks for the info! That is very helpful.