This is a very serious post. I do not have any jokes about pets or condiments this time. As I felt sickness overcome me three times in the last 2 weeks (within one month of starting my Acalabrutinib) and in talking to others in our support group, I can do nothing that is more productive than to cling even tighter to my Savior. But doubt creeps in. Doubt about whether or not it was my time to start this treatment, whether I caused my white blood cells to climb upward because I was previously taking an herbal that could cause that, wondering if I have have systematically destroyed my life by choosing this treatment at age 49, when I was hoping to be much older…the WHY questions abound.

Yet there are others who have had more serious problems than myself and my heart aches for my new friends.

So many of you have become members of the Blood Cancer Uncensored support group but are quietly lurking in the background. I know you are hurting and that you have been disappointed on many levels. We are in this together, we are allowed on that group to voice our chagrin and fears.

I set out to study more about cancer related fatigue, but it is such a “gray” area! And then I was lead into looking into immune system problems (one of my favorite topics) and “itching without reason”, which is a phenomenon that is felt by many. I was curious as to why so many people with leukemia report having skin disorders and eczema and I accidentally landed on a medical concept called Hyper IgE Syndrome. This is a rare primary immune system deficiency that makes peoples’ lives miserable. The first article I found that mentioned the illness stated that for some people, they reported chronic itching with no rash…therefore there was nothing tangible to biopsy. So they looked at their blood. They found severe inflammation in high levels of IgE protein and also low IgG. And their theory was that it effects mostly older folks (they studied some folks in the age 75-90 range).1

This lead me to think: could the occurrence of blood cancer cause this to be accelerated? Was it lurking in your system pre-diagnosis because of your environment or heredity? Or are the treatments causing it? I do not know for sure.

However, in another useful article about Hyper IgE Syndrome (here it is referred to as HEIS for short), other characteristics are defined in the following chart, taken from “The Hyper IgE Syndromes”, PMC 2683262. (Source footnote 2)

Table 1

Clinical Characteristics of STAT3 Deficiency.

What I find interesting about this condition is that although the Hyper IgE syndrome is inherited, I feel that many of us find we have compromised immunity following our cancer diagnosis due to high levels of IgE. And did I mention that the eczema component is passed on through your genetics, mainly your mother’s side? Thanks, Mom. And also, besides the standard steroid treatment which usually works best, Calcineurin inhibitors like tacrolimus (Protopic) and pimecrolimus (Elidel) are available in the UK with some advantages over steriods. (source footnote 3)

My concern for all of us is that there is not enough research being done in this area! We need to advocate for ourselves in continuing to voice our concerns over the seeming random symptoms that are most likely connected to our blood cancer and the treatment side-effects.

Also, we need to keep our skin healthy. I am deriving this from source 4, below. If we do not, this can lead to severe internal infections. Our respiratory systems are also a target for chronic disease as a result of this condition. As much as it is inconvenient, protect your skin and keep the air around you clean!

I am also of strong belief that dietary changes can help. Source 5 gives some no-brainer advice on what foods cause chronic inflammation, and which ones help beat inflammation. Some of my personal “super foods” are kale, bok choy, blueberries, and almonds.

I also suggest you review all of the medications you are currently taking and determine if they could be contributing to your immune deficiencies. I am of firm opinion that today’s medical climate does not “connect the dots” as well as they should. They do not provide “whole patient care” as they are only focused on one or two of your problems.

And talk to as many people as you can. They might have tried something unobtrusive that you can try yourself.

Finally, for my spiritual friends, pray for one another. I know the caption below is a tough pill to swallow for those of us with chronic illness. But know that God is listening, even though it might be that you are in the darkest period of your life! Like Paul from 2nd Corinthians and old testament Job, it is difficult beyond measure to understand why God allows any of these illnesses to happen in the first place. Why He allows all of us to suffer from “The Itch from Within”.

I love that this condition was originally coined “Job syndrome”. Job has an entire Bible book dedicated to his plight that is forty-two chapters long and he had so many tragic developments all in a row! And Paul the apostle, chosen by Jesus after Jesus’ death and resurrection as the replacement to Judas was no stranger to pain and suffering. Read 2 Corinthians 11:21-33 for the entire list (whippings five times, beaten with rods, shipwrecked, robbed, homeless and hungry, stoned, treated as a fugitive from the law, imprisoned several times, possible vision loss). This is just one of Paul’s blogs to the world about his personal journey as Christ’s minister.

In short, please talk to all your doctors if you make a connection to some or all of the medical information provided here so you can get receive the right diagnosis treatments. I sincerely hope that no one in group is diagnosed with the Hyper version of IgE syndrome, but that you are provided the answers we so long to receive from the medical community.

But the conclusion of the matter? Take it from Paul! For when I am weak, then I am strong so that God will be glorified through my life. That satisfies my itch for sure and gives me the ability to press onward. Yet getting from point A to B is sometimes the most challenging thing. And sometimes we pedal backwards! Our God in heaven knows and gently restores us from day to day.

We are all weak. We need each other for encouragement through our cancer journey. But I also know from personal wisdom, that we cannot get through this life without the hope that beats any medical journal or medication. And that is the hope that is only gained through belief and the saving knowledge of Jesus Christ. John 3:16 says that God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life. For some of us, relief from our symptoms will only come with the day we die and enter eternal life. In the current time until that occurs, we must fight the good fight with the amount of strength that God provides us with personally. Email me if you have questions at embassyofchristbiblechurch@gmail.com ~Lisa

Sources: 1 Dryden, Jim 5/25/2016 Itching for now reason? Immune system may be at fault –published originally by Washington University School of Medicine https://source.wustl.edu/2016/05/itching-for-no-reason-immune-system-may-fault/

2 Freeman, MD, Alexandra F and Holland, MD Steven M, The Hyper IgE Syndromes, PMCID: PMC2683262 dated 5/17/20009 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2683262/

3 https://www.netdoctor.co.uk/conditions/skin-and-hair/a3653/the-immune-system-and-the-skin (Dr. Louise Wiseman MBBS, BSc (Hons), DRCOG, MRCGP and by Victoria Lewis, 6/5/20)

4 https://primaryimmune.org/about-primary-immunodeficiencies/specific-disease-types/hyper-ige-syndrome/#:~:text=Hyper%20IgE%20Syndrome%20%28HIES%29%20is%20a%20rare%20primary,%28AD%29%20or%20autosomal%20recessive%20%28AR%29%20mode%20of%20inheritance.

5 https://www.health.harvard.edu/staying-healthy/foods-that-fight-inflammation