canswers.socialcurrentsee

secondary adjective
sec·​ond·​ary | \ˈse-kən-ˌder-ē 
immunodeficiency noun
im·​mu·​no·​de·​fi·​cien·​cy |
\ˌi-myə-nō-di-ˈfi-shən(t)-sē, i-ˌmyü-nō-\
disease noun
dis·​ease | \di-ˈzēz\

What is “secondary immunodeficiency disease” (SID)?

NoteThe “canswers” moniker in socialcurrentsee for these posts is a reference to the Q&A methodology embraced by the author, a self-described canswerist, or cancer survivor and blogger. Actually, for a definition of “canswerst,” see: URBAN DICTIONARY

As a cancer patient since 2006 who enjoys continuous remission of mantle cell lymphoma (MCL) since 2010, I have come face-to-face with SID on numerous occasions, including the present time. A Google search, good medical dictionary and the VIDEO (in the slideshow below) tell the story in a semi-clinical way, but allow me to approach the subject with a personal account.

Even though I am not cured of cancer (per se), the spring of 2019 marks 14 years since diagnosis (DX) with the blastoid type of mantle cell lymphoma. It was 2006 and less than two months before my 58th birthday.

What followed was an initial chemotherapy regimen titled R-CHOP (the “R” stands for Rituximab (a type of medication called a monoclonal antibody. It works by attaching to certain blood cells from your immune system (B cells) and killing them.)

While I was not fortunate to obtain lasting and long-term remission with chemotherapy, that treatment helped to survive long enough to receive an allogeneic stem cell transplant (alloSCT) in August 2007, some 16 months after my original MCL DX. As it turns out, the Rituximab therapy would occur numerous times before and after the alloSCT.  As it turns out, that very miracle drug happens to be the root cause of my experience with SID, or the immunodeficiency that manifests with an inability to quickly recover from upper respiratory issues (prolong coughing and sinusitis).

Hopefully, not getting too clinical, perhaps even morbid, with further explanation, I have discovered a universal reality, Rituximab (Rituxan) is a first-line effective treatment for most blood-related cancer patients, but it comes with life-long consequences for the immune system, or a medical condition known as hypogammaglobulinemia.

Thus, the common periods of respiratory distress that I can’t seem to shake persist because of my low IG levels (see chart below).

2018 IG TEST RESULTS

The most significant gamma globulins are immunoglobulins (antibodies), although some immunoglobulins are not gamma globulins, and some gamma globulins are not immunoglobulins.  But the gamma globulins of note here are those that are vital for normal immune system function, the blood molecules that help ward off and fight infection.

The most recent charting of these IG levels for me show that throughout 2018, all six of my IG (blood) tests produced results well below the 700-minimum range.  The last test on Nov. 20 returned a result of 418 when the protocol for an outpatient prescription of an IVIG (infusion of what is called gammagard) requires a sub-400 reading.

Therefore, we await that IVIG, now scheduled for Dec. 18.  We hope we can reschedule this infusion for an earlier date.

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3 thoughts on “canswers.socialcurrentsee

  1. As a postscript for this topic (IVIGs), I had this interesting response from a fellow mantle cell lymphoma (MCL) survivor, initials BG: “I was diagnosed in late 2006 and received R-HCVAD, have had no treatment since then, and remain in remission. A few years after the end of treatment I began having episodes of sinus infections and bronchitis and the events became more frequent and lasted
    longer – 6 to 8 weeks. I discussed this with my oncologist who said he didn’t think my disease or treatment had anything to do with it – he is no
    longer my oncologist. Anyway, I was referred to an immunologist and, after testing, it was determined that my IGG level was around 280 and all of my
    other IG levels (A, E, etc.) were also significantly below the low level. She said I would be a candidate for IVIG but suggested I might want to try
    another regimen first. At her suggestion, I take a daily high dose Vitamin D (5,000 iu), a daily probiotic, and a daily low dose prophylactic antibiotic
    (500mg cephalexin). For the last three years, I have not had any sinus infections despite the fact that my IGG levels remain in the 280 – 290
    range. This may not work for everyone but it definitely works for me.”

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  2. Another frequent contributor to other message boards and sites for mantle cell lymphoma (MCL) goes by the initials M.W., and he has written:

    “Here is an excellent article on IgG levels and IVIG treatment.

    http://bit.ly/2AuImN7

    “The article talks about a four-week cycle for several reasons and that is what my doc wants me on. If I miss more than two monthly treatments my levels drop below 500, so I sure don’t miss many this time of the year. The impact of IVIG takes a week or so after the treatment so it is not such a good idea to wait until it gets too low.

    “I’ve been on IVIG since 8/14 and never had a problem with being treated at any IgG level. I don’t let my level get below 500 and usually try and stay in the 700 range or above. By the way, I would have two or three bad sinus or upper respiratory issues a year before I was diagnosed in early 2014. I have not had a sniffle since. We are all different so it may not affect us all the same.

    “I’m not sure all the blame is on Rituxan. MCL is a disease of the immune system so the disease itself makes a major contribution — as does Rituxan.

    “If I was having problems with my doc, I would go in armed with reports that show that levels below 700 or so produce upper respiratory problems and can even lead to death via pneumonia Since we have a compromised immune system, it can lead to that end result.”

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  3. So what do I choose to do to fight off infections due to my depleted immune system? Other than the periodic IVIGs about every three months, I try to avoid any obvious situation where and when human contact might raise the risk of picking up an infection. No, we can’t avoid every situation, but we choose not to partake of food buffets of any type and we don’t go out to eat in places like cafeterias.

    What’s more, at home we liberally use aromatherapy with essential oils and we ingest and topically apply some of these products at a nominal cost. Diet planning and vitamin supplements are also essential.

    No, we have not stopped all events of bronchitis and sinusitis, but these have lessened over time, even as we have now passed the age 70 milestone.

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