compromised immunity

[ivy39]

As a CLL patient who recently completed Venetoclax monotherapy and stopped because all bloods were in the normal range, would I still be considered immunocompromised?

[cajunjeff]

Our cll compromises our immune systems to varying degrees over time. Many of the drugs we take for cll are also immunosuppressive as they cannot fully distinguish our good white blood cells from our bad ones.

Restoring out labs to normal values does not equate to full restoration of our immune systems, although there is some evidence drugs like ibrutinib may restore a part of our immune system.

We have redundancies in our immune system such that some people seem to do okay even with some compromise to their immune system. Others might need periodic antibody infusions (ivig infusions)as a boost. Some people think their bloods are in normal range but are not looking at igG tests, a measure of our antibodies.

In general terms I would expect most people who have undergone any cll treatment have some degree of a compromised immune system. But some people can do just fine without a fully intact immune system.

[BoomrangSuj]

Hi ivy39,You should ask to get your IG levels tested (igA, igG & igM). Those are the indicators for your immunity levels.

I think the blanket rule in Ontario is that CLL patients including those with successful Stem cell transplant, are considered high risk and immunocompromised forever and need to be monitored at least annually.

Realistically, if your Ig levels get to normal ranges, you will have a functioning immunity (though officially still considered immunocompromised).

Best!

Sujit

[ivy39 in reply to BoomrangSuj]

Thank you for your response sujitsur. My Ig readings along with those from my CBC were all in their normal ranges. So officially I am still immunocompromised?

[cajunjeff in reply to ivy39]

Essentially all CLL patients have impaired T cell function and some degree of impaired overall immune function.

cllsociety.org/2019/10/ash-...

[SamanthaJane123 in reply to cajunjeff]

Great article. Thanks.

[BoomrangSuj in reply to ivy39]

That is amazing, ivy69! As cajunjeff replied below, officially you are still immunocompromised, but if your Ig levels are normal, you have a functioning immunity, and with some basic precautions, you will have minimal infection issues.

[AussieNeil Administrator in reply to ivy39]

The immune system is extremely complex, with multiple overlays in how it responds to infections. Having your Ig and CBC readings all in their normal ranges is a very good indicator that your immune system should be in good shape, but the best guide is still how many infections you get and how quickly you get over them. Normal blood tests don't go into the make-up of your lymphocyte count for example, where the number and ratio of B, T and NK cells is also important, as is their degree of activity. CLL can drive T cells into exhaustion and it's not unusual to see a reversal of the normal CD4/CD8 T cell ratio. Those parameters should recover after treatment, but it can take time.

Neil

[ivy39 in reply to AussieNeil]

Thanks to all who responded. I have not had (knock on wood) any infections such as flu or common colds for several years, so it all points to a hopeful outcome if and when Covid vaccinations become available.

[AnneHill in reply to ivy39]

Many cll sufferers will be asking the same questions about their immunity. I feel that when a doctor says that the vaccine will be given to those people that will die if they catch covid, then this should apply to us. I know many will find they are hiding at home to avoid this virus. I am taking ibrutinib and my blood is in the normal range but I need ivig. I havent had infections but take a small antibiotic to stop urinary tract infections. I have ivig tomorrow and it will be interesting to hear the hospitals opinion. Anne uk

[BoomrangSuj in reply to ivy39]

Hi ivy36,I asked my transplant hemo-oncologist about vaccine for immunocompromised patients on 30 Nov, as I had read in the prelim reports that the Pfizer vaccine has not been tested on immunocompromised subjects.

He told me that the guidelines are yet to be made available to the health departments.

I expect that as there are three different types of vaccines that have cleared human trails in the west (China and Russia have also developed their own vaccines), there might be some sort of directives soon as to which type is meant for which population based on age, immune status, comorbidities and logistics of supplying to the region.

Pfizer and Moderna vaccines are based on the mRNA technology, which is new and untested and there are some reports that is is not designed for people who have significant allergic reactions.

The Oxford vaccine works like traditional vaccines, so the process is time tested.

Then there are issues about cost and logistics (storage temp.) that will also play into the decision making for distribution by the governments...

I guess there will be more clarity about which vaccine for which demographic over the next 3-4 months. Just like clinical trials, unfortunately, the only way we will ever know which vaccine is best for immunocompromised subjects, is once they start administering the vaccines to larger populations.

I think it is best to have this conversation with our oncologists to have an informed decision regarding which vaccine would be best suited for us.

Till then, staying safe and socially distanced is still our best defense.

[BoomrangSuj in reply to BoomrangSuj]

You might have already seen this, but here is Dr. Koffman's Dec 2020 report on covid vaccine for CLL:

cllsociety.org/2020/11/dr-k...

[ivy39 in reply to BoomrangSuj]

Thank you, sujitsur. As a 'senior', over 80, it is just possible that I will be offered a vaccine before the research on its efficacy for immunocompromised patients is available. My current thought is that I will opt for the vaccine in the absence of any pro or con evidence.

[BoomrangSuj in reply to ivy39]

Well then you will be one of the brave pathfinders who will help us all figure out the best way forward🙏🏽🙏🏽.

As Dr. Koffman noted, the Pfizer vaccine has high efficacy for the elderly (pro) but is is not widely tested (not has the underlying mRNA technology) for immunocompromised subjects (con).

In any case, CLL is such a heterogeneous condition, and with so many unknowns about covid and it's impact based on our age, disease stage, medications and remission status - our reaction to the vaccine will most probably always be a sample of 1!

Vaccine or no vaccine, we all are better off continuing with our health protocols.

There are way more germs than just covid in the world, and our immunity to all of those will always be considered sub-optimal.

Stay safe and happy holidays!

[ivy39 in reply to BoomrangSuj]

We may get more information by the time the vaccine is offered. I am in Canada and health Canada just this morning approved the Pfyzer vaccine. The over-80 cohort will likely not be the first group to get their shots so I have time to weigh the pros and cons.

Happy Holidays to you, sujitsur.

[Fwanni in reply to AussieNeil]

Neil, I have cll a long time, ibrutnib levelled bloods to normal range from v high, over 12 months. However skin cancer is now hitting hard foot, knee. Just had centre foot cut out, grafted. Cll appears to develop skin cancers, or is there any official downside to ibrutnib, as some doctors refer to 'the good and the bad of ibrutnib'?Is there any official info or guidelines on type of skin cancers with cll?

[AussieNeil Administrator in reply to Fwanni]

Sorry to hear of your skin cancer experiences.

It's not that CLL develops skin cancers, just that CLL exhausts the T cells so they can't perform their surveillance and elimination of incipient cancers as effectively, so our skin cancer risk may be up to 10 times normal risk, depending on the study. Unfortunately we also don't have as good survival statistics as healthy people, which is why it is important to have at least annual skin examinations to catch possible skin cancers early.

Neil

[Smakwater]

ivy39,

From one CLL patient to another,

When you say all bloods, I assume that you are referring to a CBC lab report.

Although a good CBC is wonderful news, the immune system is much more than what is interpreted individually in viewing a CBC result. The immune system is divided into two types: innate immunity and adaptive immunity. Adaptive immunity further divided into two types that is humoral and cell mediated immunity. In depth testing is not common in general practice, rather it is exercised more within specialized practice under a specific indication.

Don't want to get to carried away as it gets complex very quickly | Just the beginning - ncbi.nlm.nih.gov/books/NBK2...

You can access a multitude of medical publications discussing immune biology and from here the sky is the limit, but as Neil stated "the best guide is still how many infections you get and how quickly you get over them".

What you cannot see can harm you. Not to promote paranoia, but rather to encourage good judgement in all of your precautionary behaviors. The basics have proven to be the very effective in preventing infection; e.g, regular hand washing with soap, cleaning surfaces, avoid crowds, attain proper ventilation, eat well, clean and prepare food properly, exercise regularly, etc..

The short answer to your question is "Having CLL and having been treated, You are most likely compromised at some level. Take precautions".

I sense that you already know this.

Be well,

JM

[ivy39 in reply to Smakwater]

Thanks JM. Appreciate you comments and can assure you that uncompromised or not, I continue to follow the preventive measures which have been suggested. As regards Neil's comment, I am happy to report that I have had no colds or other infections for a few years. I await the outcome of research into the efficacy of Covid vaccines for immunocompromised patients but expect to opt for the vaccine if it is made available before any research findings are published.

Wishing you GOOD HEALTH.

[Smakwater in reply to ivy39]

Thanks ivy, I'm in!

[Smakwater in reply to ivy39]

Hello again ivy,

I remembered a few offerings from cllady01 regarding the immune system.

Here are the post and the related links.

healthunlocked.com/cllsuppo...

livescience.com/38028-how-t...

healthunlocked.com/cllsuppo...

ncbi.nlm.nih.gov/pmc/articl...

If you want an immune education, hook up with cllady01. She is over the top.

JM

[ivy39 in reply to Smakwater]

Thanks, JM. So much to learn!