Twice I was all set to go for my infusions of antibodies and both times something got in the way. The first time – I developed the shingles. This delayed me for a month. The second time – two days prior my husband ended up in the ER with a fever of unknown origin and so was not a good time to begin this type of treatment. He was thought to be septic from an infection from a medical procedure he had a few days earlier. After extensive testing, it turned out to be a reaction to the antibiotic he was put on prophylactically after his procedure. We did not know this final result until the next week.
When things are delayed, you start to think. And the more I think, the more I question. I looked into the infusion process online and spoke to a nurse at the pharmaceutical company again about my concerns. The first time I spoke to a nurse she said that 1 out of 5 people cannot tolerate the infusions to the point where they have to stop. This is a high number. She understood my concerns about side effects and thought maybe I should hold off for a while.
I have also spoken to several patients who have gotten the immunoglobulins via IV. The infusion process for me is a newer process – it is subcutaneous so it goes under the skin abdominally as opposed to IV which is through a vein, which makes it safer for me. These patients seem to have tolerated them well although they didn’t have to go regularly, maybe a few times a year if even that. My treatments would be once every three weeks or so potentially for the rest of my life.
It is a very hard thing to face when a doctor says you have to do something for the rest of your life, especially something every few weeks for hours at a time that may carry serious risks. It is also difficult to have gone through a very serious diagnosis, difficult treatment for that diagnosis, then worked hard to alleviate fallout from that treatment while doing what is in my power to keep the cancer from coming back. I felt successful that I overcame such a serious diagnosis with very few “scars” so to speak. Until … the issue came up where several drugs I was treated with caused damage to a line of white blood cells that produce most of my antibodies. And these days the word “antibodies” is on everyone’s mind, not only mine. The issue of COVID brings the discussion into a different place.
Without producing many antibodies, I am susceptible to all kinds of problems. It leaves me unprotected and vulnerable to infection. One interesting thing is that it also wipes away memory of previous infections so theoretically I could get the same disease again and again, my body wouldn’t recognize immunity to it. And this also goes for anything I was previously vaccinated for such as polio, smallpox, measles, tetanus, etc. Antibodies to all of these and more are undetectable. And then there’s the issue of the COVID vaccine where some advice I was told was “get vaccinated but act like you’re unvaccinated” because it’s unlikely to work. If I got the infusions I would get antibodies of previous COVID patients as well as those who have been vaccinated so that is definitely a plus.
But yet here I sit, unable to move forward with these infusions because of the risks they pose and the need to rework my life every few weeks to do them. I am angry. Angry that I have to deal with this after all I have had to go through with my previous cancer diagnosis, among other things. I suppose I should be grateful that all these wonderful, miraculous medical options exist and are available to me. I am not there yet. I thought I was done with my cancer “experience” and that I had a future to look forward to and I could move on. To not have to think about cancer again. What a privilege that would be! Not so fast. Ironically while I may (hopefully) be done with Mantle Cell Lymphoma, I am not done with complications that will follow me for the rest of my life. Complications I never dreamed of a few years ago. So yes I am angry. I am also scared because there is no good decision here. As you try to fix one problem you give yourself other problems and then those have to be fixed and so on. Not what I want for my life. Not what anyone would want for their life. But yet I have a life that no one thought I would have 6 ½ years ago when I was diagnosed with what is often a terminal disease. For that I am grateful, even if it doesn’t seem like it at times.
I just did bloodwork again yesterday to test my antibodies to see if one last thing I tried on my own moved the needle. I won’t know the results for at least a week. I am throwing everything I can at my situation that is helpful without causing harm. One of these days I may just end up in the infusion room of my doctor’s office, beginning the process of the antibody infusions. I may still make that decision sooner or later. I am not there yet.
