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Persistent immune deficiency

PBL
Posts: 219
Joined: Jul 2016

Hi All,

The current string of uncertainty brought about by the CoViD-19 pandemic has put the issue of immune deficiency to the forefront of my mind.

I have yet to reach retirement age by a good number of years, haven't been through nearly as many treatments as a number of other posters on this forum (6 R-CHOP + 12 Ritux 2016-2018)... and yet, a good two years from my last Rituxan dose, I still have a downward-trending IgG number.

So, among other questions, I am wondering how many people here have persistent immune deficiency years after treatment or alternately how long did it take for you to achieve normal serum protein electrophoresis numbers, and if you're in a similar situation to mine, how do you envision your professional activity while waiting for a hypothetical, widely-available vaccine?

Just thought I'd start this ball rolling here, and see if the topic is of any interest to anyone.

PBL

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

Obviously a great discussion topic.   My hardcopy files are marked "Autoimmune Compromised," but I don't understand what criteria is employed.  I ended chemo ten years ago, and catch fewer colds or flu than anyone I know....   A side-effect I had my whole six months of infusions was "Flu-Like Syndrome," a fairly common thing.   The last several years, I have felt pretty much continuously like I was "catching something, " but seldom did.    I feel 'hot' and have to be under a fan nearly all year long, but my temperture is usually around 97 degrees.   Weird stuff

 

max

PBL
Posts: 219
Joined: Jul 2016

Max,

It's a pity you haven't got a clue what objective criteria for labelling you "immune compromised" were used - or, I assume, whether those criteria still apply today... 

Mine are persistent below-normal IgG levels on serum protein electrophoresis.

In terms of susceptibility to infection, my experience seems quite different from yours: I have had several rounds of the flu (the real thing) starting from age 20 and despite frequent vaccination (in fact, every time I had an employer that offered it to employees). I never seemed to be able to take the train or the plane without catching a cold or sore throat or bronchitis. The first few years of my teaching career (in my late thirties and early forties), I had nonstop colds - so much so that I had lost all sense of smell and couldn't detect a blooming hyacynth in a closed room - and frequent bouts of stomach flu as well. All of this despite being an adept of frequent handwashing and airing rooms.

I guess I must have developed some immunity and/or become super-efficient at not catching anything, as I managed not to have one episode of infection throughout chemoimmunotherapy - though of course I wasn't in the classroom during chemo and recovery...

Since the end of treatment, my hematologist has prescribed flu, pneumonia and tetanus shots which I have diligently had, but the current situation with a new virus has me working from home (which I believe cannot be a viable teaching situation...) with a medical certificate stating that my health situation is incompatible with being in a school environment - hence the new thread!

PBL

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017

except for a 15-month sinus infection which ended after I stopped Rituxan, my issue has been an overactive immune system attacking my own body despite my low white cell counts. Remember that, in a real sense, lymphocytes are our immune system. Lymphoma is therefore a cancer of the immune system. That is why I advise family that "strengthening your immune system" , as many foods and supplements claim to do, is not necessarily a good thing. Such things may also strengthen cancerous lymphocytes. It can sometimes worsen arthritis, lupus, psoriasis and other autoimmune conditions. It seems that there are many subtypes of lymphoma as there are lymphoma patients, each with its own set of symptoms. I wish you godspeed in finding a solution to your situation. Perhaps the medical professionals among the members of this board can chime in? 

PBL
Posts: 219
Joined: Jul 2016

... is not a problem that I am aware of. Although I have a sibling and a parent with one, I seem to be exempt of that type of disease. Unlike you, Shady, all my cell counts are within normal range - so that is not the issue as regards my particular immune deficiency.

Funny! - I thought I'd get plenty of replies saying "yeah, me too" and that the conversation would soon turn to various medical professional responses/advice in the current pandemic setting...

Thanks for the kind wishes! I am increasingly inclined to think that the solution will be the vaccine every lab is currently trying to develop - and that leaves me wondering what my next school year will be like...

Evarista's picture
Evarista
Posts: 287
Joined: May 2017

This business of having a weakened immune system but also having some degree of autoimmunity is not an "either/or" situation.  For example, you may have a low lymphocyte count, but if a percentage of those lymphocytes are targeted to "self", you may have some autoimmunity. I certainly have experienced these random incidents (joint inflamation) in the 3 years since finishing my R-EPOCH.  My Ig levels were 10% of normal when last checked.  My lymphocyte count hovers near normal, but my ANC (Absolute Neutrophil Count, which I'm told is a more meaningful number) remains below normal.  In addition, the one time I was checked, my CD4:CD8 T cell ratio was reversed from normal...More like the profile of an AIDS patient. So normal numbers but not normal profile. 

It all adds up and is part of my "new normal" of immuncompromised.  That said, other than a 5+ week long stretch of winter "colds", I have not been sick.  Get my recommended vaccines and am currently literally avoiding SARS-CoV-2 like the plague.  

I did ask my Hem-Onc PA at my last visit about this persistent immunocompromised state and, most particularly, whether it had implications for recurrance of disease.  She said that many patients are "just like this" and that there is no indication that it is a predictor of relapse. Just one opinion, but a comforting one.

Be well all.

PBL
Posts: 219
Joined: Jul 2016

... is also basically what my hematologist has got to say about this - and I more or less accept it. I also understand that you can have both autoimmune disease and an impaired immunity - what I meant to point out is that I have been checked for the same autoimmune disease that runs in my immediate family, but do not seem to be affected by it.

I am of course, like you, taking every precaution to avoid a close encounter with that new virus. Unfortunately, I assume this will only be possible to a certain point, as I am not even near retirement age and cannot possibly imagine not having to go back to the classroom. This school year is out the window for sure, but what of the next school year?

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017

My guess is that within 2 years we will have approached a 100% infection rate. That is why an effective vacvine is so important.

PBL
Posts: 219
Joined: Jul 2016

Yes, I'll bet there are plenty of folks hoping for a quick and effective solution - ideally a vaccine. Two years sounds too good to be true, and yet it's also a long time. Not to mention the fact that a substantial percentage of the population will not want to get the shot anyway; that's how we still haven't managed to eradicate measles or polio in decades of vaccination campaigns.

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017

There are many wild conspiracy theories about vaccines and then there are the religious objections. No one should be forced to take a vaccine but those who refuse it do so knowing they must live with the consequences of their actions.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

No one I know is paying Covid any attention any longer (I never did pay it any attention).  In a few months, except in areas with extremist governors, there will be no restrictions. SC, Ga, and Florida have few to no remaining restrictions, and there has been no spike.  Florida has an OLDER population that NY, and about the same overall population, but never had rates like NYC, where draconian measures were the norm.  Recall Y2K, that was going to end Civilization worldwide ?  Exactly.   SC has a strong libertarian and contrarian political tradition, and does not adapt well to 'virtue signaling' (masks, etc.)    

To PBL's excellent post:   I will look up my results regarding the key value you mention, but I know that overall, all of my CBC and metabolic profile values have been perfect since about one year after infusions ceased.   I also never had a cold or flu DURING my six months of R-ABVD.   I would go in to the infusion center and see some (not a high percentage) of patients wearing masks, and wondering , "What ta hell is that about?"   My oncologist and his NPs never recommended that I get one.  My infusion site also housed the transplantation offices (NOT the clinic, however) and the transplantation doctors' offices.  My doc's office was directly adjaect to the SCT doctors (same reception area,same nurses) and I never saw masks worn there.  

To the virtue signalers, I recall a line from one of Shakespear's plays:   

"Dost thou think, that because thou are virtuous, there will be no more cakes and ale ?"

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017

the high risk people need to be protected. This whole [Content Removed by CSN Support Team] takeover really bothers me. I am certain some of it is largely political. Some just do not want the economy back before this falls election. Here in Virginia Herr Northam flounts his own rules. He mandates that everyone else wear a mask but almost always conveniently "forgets" his. He mandates no unnecessay travel allowed yet he takes a state plane and flies to his house in OuterBanks NC for a weekend getaway then denies doing it even though many people saw him there. It is the same in most every state. I wear a mask when shopping indoors and sterilize my hands afterwards. That is it. I am going to the cabin next week for 3 months. No one else around, just my wife and I. Trout fishing and short hikes. Enough of this nonsense.

PBL
Posts: 219
Joined: Jul 2016

Max,

I was treated at a busy teaching hospital's hematology department from 2016 to 2018, and would see some people who had masks in the waiting room as I checked in for my infusion day - and like you, I remember wondering what was up. I never wore one myself during that period, nor was I advised to. Regarding the current pandemic situation though, my doctors are perfectly happy to tell me to stay home...

As regards the discrepancies in numbers of cases between two states of more or less equivalent population figures such as Florida and NY, there may be several leads to explaining them - and let me say straight away that I am no expert on these points. First off, population density: a virus is much more likely to spread if its targets are not too far apart, and even more so if they are constantly darting about, commuting to and from work, shopping, going to shows, etc. Which is the second point: one may argue that older folks, past retirement age, even if they have plenty of hobbies and an active social life, are probably not rubbing shoulders with others nearly as much as younger, professionally active individuals.

One other point worth considering here is the communication around the actual impact of the virus. Depending on how you count your cases, you may have widely varying results. As some have declared, if you do not test potential cases, then you do not have any cases! Alternately, poor test quality or sampling can also lead to deceitful numbers of cases. That is why it may be more reliable to compare the excess number of fatalities for, say, March 2020, as compared to the usual numbers in the same months over the preceding years. Then you end up with, for example, nearly 50% more deaths in Italy in March 2020 as compared to the March average for the previous five years. In France, you'll find an excess number of fatalities of 25,354, of which only 13,710 cases have been declared as due to CoViD-19...

One thing is sure, as you have noted yourself, many people have already ceased to pay attention to basic rules such as keeping their distances and wearing masks, therefore jeopardizing the lives of those who are most at risk of contracting a severe case of CoViD-19.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

PBL, you are correct that NYC is a petri dish for filth and the transmission of disease (my summation, not yours).   Subways, city busses, jammed lobbies, airports mmiserably crammed,  are all make-in-heaven structures to promote viruses.   Interesting, what this proves about mass transit.....

Shady,  I have heard that trout may transmit the virus, but only when caught in shallow waters....

PBL
Posts: 219
Joined: Jul 2016

At least you should be safe and get a break from all of this...

This pandemic has hit hard the economies of many among the most developed countries - not all of which have an election in a few months. Industrial sites and other businesses are downsizing already, and millions of laid--off people are scared worldwide. The alternative to lockdown measures was unthinkable: "live (if you can) and let die". There would very likely have been plenty of criminal lawsuits against various instances of government. Plus, I am not sure letting nature take its course would in the end have left those economies in any better shape.

ShadyGuy's picture
ShadyGuy
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Joined: Jan 2017

The way the govt reimburses hospitals is also a factor. Say a person goes in with a heart attack. He/she may also test positive for COVID-19. That unfortunate person dies. If it is shown as being caused by a heart attack the hospital gets about $12k. If death is shown as due to COVID-19 the hospital receives well in excess of $30k. There is a strong financial incentive to say it was COVID-19. It is a serious disease no doubt but it is a fact that most people recover quickly thinking they had a cold. We vulnerables need to take care. Everyone else should go back to work. Just my opinion. I just hope this roll-back of our liberties can be reversed - for my descendants more than for me.I am very discouraged by all this. My last remaining uncle, age 88, is in the hospital dying alone. No visitors allowed. A friends son-in-law committed suicide when he lost his job. I miss my grandchildren. The cure should not be worse than the disease.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

The best percentages for persons under 50 fatality is 00.05, or less than half the average influenza.

Suicides, bankruptcies, and deaths from inavilibility for routine in-person medical care however are astronomical.   It was a perversion of reason, science, and common sense, what the world did in response to the flu.   The truth will be known some day to all.

I have known numerous persons who could not get life-saving radiation or surgeries during this period.  I myself could not go to the urologist for my annual Prostate Cancer follow-up for several months....  Urology offices were worried about "running out of space" due to Covid ?   When did a Urologist or urology NP treat covid ?  The receptionist told me that no one in their practice had done ANYTHING during the six weeks their facilities were shuttered.   The degree of lunacy in all of this is difficult to fathom, actually.   I went to my GP for a pheumonia shot over a month ago. A huge practice adjacent to a Hospital, five MDs, 7 NPs, nursing staff.   When I arrived, I saw NO ONE in the hospital, except goon 'screeners.'  The receptionist inside the doctors' offices was ALONE, no one waiting.  SHE asked ME, "Aren't People still having heart problems and appendicitis ?"   I responded ""Ya think ?"

The Mercy ship recently left LA after seeing 77; it was equipped for 1,000 patients.  Most FEMA 'overflow' facilities saw either NO patients, or few, and have been taken down.   Y2K is over folks, go home and forget that all of this ever happened. Well, that might be hard, if losing your home and business has put you on the street.

I have not known one person who had any symptoms from Covid.   Not one: no relative, no coworkers, no one at work (our office houses 800 persons, when they are not home under the bed, per DHEC orders).   Sweden has now gone a week without one COVID-related death.  Sweden, which never closed its economy.

PBL
Posts: 219
Joined: Jul 2016

Max,

True, the disruption in medical services has certainly indirectly cost lives in people who delayed seeking treatment or whose treatment was delayed. Nevertheless, have a look at these tidbits from this article published a couple of weeks ago:

https://www.france24.com/en/20200517-sweden-s-covid-19-strategy-has-caused-an-amplification-of-the-epidemic

"Statistics suggest that Sweden has performed poorly compared to its Scandinavian neighbours, which imposed strict lockdowns. Experts say the other Nordic countries are the most apt points of comparison, given their similar healthcare systems, socio-political cultures and levels of connectedness.

Reported coronavirus deaths per million in Sweden stand at 358, according to Statista – even higher than the hard-hit US, at 267. The Swedish figure is dramatically worse than those of Denmark (93), Finland (53) and Norway (44). In Sweden, “we’re seeing an amplification of the epidemic, because there’s simply more social contact”, said Lynn Goldman, dean of the Milken Institute School of Public Health at George Washington University in the US.

In response to a comment in late April hailing Sweden’s performance, Nicolas Nassim Taleb – a professor of risk engineering at New York University, famous for his book on probability and uncertainty The Black Swan – tweeted back: “Stop the bullshit. Sweden did HORRIBLE [sic] compared to Norway Denmark Finland.”"

An elderly patient of my physiotherapist's, who usually has her appointment directly before or after mine, was very ill starting at the end of February. It was deemed "pneumonia", but in retrospect she exhibited many of the now tell-tale symptoms, including loss of taste and smell, tremendous fatigue and shortness of breath. My daughter was told by the doctor she consulted for a stubborn case of sore throat in mid-March that "she couldn't be sure it wasn't CoViD-19", so she was told to self-isolate for a couple of weeks. My nephew had a mild case of CoViD-19 in April. I'd say you're lucky if you haven't seen any case around you.

 

ShadyGuy's picture
ShadyGuy
Posts: 511
Joined: Jan 2017

When testing increases the number of "confirmed" cases increases. This does not necessarily mean the number of infected people increases, but that more cases are recognized. I am convinced many, maybe even most, of the people who have this virus are unaware. Still if you test them the numbers go up. As for deaths, Sweden is full of old people and has a low birth rate. Also have a different attitude about death and may not be driven by the fear, panic and hysteria you see here. Human assisted suicide is legal, suicide rates are high, and perhaps they don't have the drive to save old people that you see in the USA. Also they have a very substantial middle east snd African immigrant population who do not necessarily trust doctors which may mean they do not seek medical care in time. Lots of things figure into the statistics. Also each country has its own way of counting these things. Comparing these countries statistics can be like the proverbial " apples to oranges". Just some thoughts.

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

PBL,

If you will re-read my post above, you will note that I did not say that I had not known anyone positive for Covid, but rather that I had not known anyone with serious symptoms from it.  What is relevant is the death rate; infection rates, the higher they are, prove the NON-danger of the virus for virtually all of the population.   Most of the examples of positive persons you list itself relates, mild, essentially meaningless symptoms: a bit of sore throat, a bit of stuffiness.  So what ?  And then the typical elderly person who "might" have had Covid.  I might win the lottery.

I have several analyses that I will PM you refuting these reports from Sweden.  NOT the absolute numbers, but the perspectives involved.  I love where it says Sweden was "even harder hit than the US," (typical media slant) but the Corona death rate in the US was a pittance, virtually nothing for most individuals; as I noted, less than the average flu season (except among the very old, who were forced together with other known-positive patients in an inhumane manner; over 60% of NYC deaths were in nursing homes).  Of course, there are "studies" that say women have been impregnated by space aliens from ancient times, so tit-for-tat is not an adult way to proceed.  Americans are as ignorant of critical thinking and statistical skills as they are at everything else.   Corona was farsical and a failure of mass intelligence. 

In six months, virtually no media reports will mention Corona in any way.  Minnestota police have already redirected the media pack hounds.  Meet me back here in December, and we will see.

PBL
Posts: 219
Joined: Jul 2016

Max,

I am afraid this thread has gone way off its initial course, as it was meant to exchange over long-lasting immune deficiency and management thereof in the current context.

You and Shady clearly have strong beliefs and I should have refrained from replying to their expression - even when it  seemed to contain erroneous notions, as I never intended to get into any kind of dispute with anyone. My apologies to all. 

As you put it yourself, we'll see in December how that CoViD-19 pandemic has turned out.

In the meantime, if anyone wishes to discuss their immune status and how it is managed, I'll be happy to read what they have to say on the topic.

PBL

ShadyGuy's picture
ShadyGuy
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Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3440
Joined: May 2012

PB,

Disgression is the greater part of valor.

If only more people knew what disgression or valor meant, or who their Governor is.

 

 

PBL
Posts: 219
Joined: Jul 2016

The better part of valor
is discretion, in the which better part I have sav'd my life.

... But, good Sir, prithee let us not digress again.

 

Evarista's picture
Evarista
Posts: 287
Joined: May 2017

Is to monitor myself for signs and symptoms of the Dunning-Kruger effect.  Fortunately, I have kind and gentle people in my life who lovingly assist with this!  I encourage others to do likewise :) If anyone is interested, the Univeristy of Virginia has a very useful dashboard: http://nssac.bii.virginia.edu/covid-19/dashboard/  The COVID Tracking Project (https://covidtracking.com/data) offers state-by-state data and an assessment of the quality of that data (obviously their opinion).

Thanks to PBL for your voice of rationality.  

Be well & stay safe. Estar bien y estar segura. Ha det bra och håll dig säker. Kun ealaa ma yaram wahafaz ealaa salamtak. 保持健康 Menjadi baik dan tetap aman. Zeyn gezunt aun bleybn zikher.

ShadyGuy's picture
ShadyGuy
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lindary's picture
lindary
Posts: 695
Joined: Mar 2015

Around the time the Covid19 stuff started I had a scheduled phone meeting with my oncologist. She told me my blood counts were good and I didn't have to worry. Also to remember to wear a mask when going out. (I use a bandana.) I still take extra care because I know my counts on are the low side but I need to check that ANC number, thanks Evarista. Then I read an COVID19 article where doctors have seen that people who are cancer suvrivors are more likey to die from the virus than those who didn't have cancer. It puts me back to the thought that people who have had one of the blood cancers is more vulnerable. Of course for me I am also over 65. I am not letting this make me crazy but it does justify being careful. It won't stop me from enjoying the things I like. BTW I've loaded an app on my phone to track the number of days to retirement. As of today 89.

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