“Growing” Pains During Chemo
As I continue to try to grow “Paul’s Heart” to reach as many as I can, I took the leap and started a TikTok page several months ago, @paulsheart2022 . The page is titled “Paul’s Heart.” My plans with that page, as long as TikTok continues to function, has been to “journal” my journey over the last thirty-six years from the time I discovered symptoms, to my diagnosis and treatment of Hodgkin’s Lymphoma, and the thirty-four years of remission I have been blessed to experience. The videos are titled so you can go specifically to certain videos for convenience, and they last anywhere between four and ten minutes. Two of the recent videos I posted pertain to common issues that still exist today, and regardless if you are dealing with Hodgkin’s or any type of cancer. I generally do not like to duplicate my posts across social media, but these two topics I consider important to all who read them and are going through cancer right now, working while going through treatment, and dealing with bone pain. I will address the working issue in my next post here.
Understand this about chemo, its job is to destroy cancer cells. Unfortunately, in the process of doing what it is intended to do, it also destroys good cells, your red cells, white cells, all of them. Which is why a patient usually has a blood test done prior to beginning every treatment to make sure that the body is able to handle the next round of treatment or not.
In 1988 and 1989, if blood counts were too low, treatments would either be modified, altered, or perhaps even postponed, to allow the bodies cell counts to return to a safe level. Of course, the best chance at remission is to have treatments in full and uninterrupted. This interrruption did happen to me during one of my rounds of treatment, and it was devastating to me to have to delay my treatment even just a couple of weeks. Fortunately, it did not have an impact on my survivorship and remaining in remission.
As I began my advocacy in cancer support and advocacy, it was a few years later that I learned of a treatment to help increase a major culprit in treatment delays, low white blood cells. It was a drug called Neulasta or Neupogen. Though they are still used today, I am sure there are other drugs available and used. But the great thing is, this white cell booster method works and helps to keep treatment schedules on track. Again, this discussion is not just for Hodgkin’s patients, but for all cancers.
So where will all these white cells be generated by the drug? Where the body always builds its white cells, in the bone marrow. But there is an unfortunate side effect when too many white cells generate too quickly. It is a similar situation that some of us may have experienced earlier in our lives. Did you ever hear an adult say that you as a child had a “growth spurt” over a period of months, or recognized someone else who obviously did grow several inches in less than a year? Sometimes, growth like this can result in pain, hence where the term “growing pains” comes from. It is the rapid growth of the white cells in the bone marrow, in the bones, that causes these pains.
But for decades, as I talked with patients, who mentioned this bone pain following the shots to boost the white cells, most could never find relief, no pain killer from Tylenol to opiode would work. And it was by some chance, I met a patient about eleven years ago, who told me how he had dealt with this bone pain, actually preventing the pain. And it could not have come as any bigger surprise.
No, this is not an ad. I actually pay not to have ads on my blog. This patient had a regimen to follow to prevent the bone pain from ever occurring. But how does an allergy pill work to prevent pain? Drugs are approved and labelled to treat specific problems and Claritin’s FDA approval is as an antihistamine, allergy drug. Doctors aware of other benefits of certain drugs, can recommend or prescribe “off label” use of drugs, for a different use other than what was approved by the FDA. And in this case, bone pain related to boosting white blood cells, it is not only a game changer, but a huge boost to quality of life in one of the darkest periods.
I want to be clear, I AM NOT TELLING YOU TO TAKE CLARITIN. I am not a doctor. What I am doing, is giving you information, if it has not been brought up by your doctor, AND ASK THE DOCTOR. You might be surprised how quickly “of course you can take Claritin” comes out of their mouth. I experienced this myself, as I met with my father’s oncologist, discussing my father’s treatments for lung cancer. We got through the entire appointment preparing my Dad for what he could expect and how long, and the doctor never mentioned the potential for the bone pain when my Dad came for those white cell boosting injections. This would have been disastrous for my father. And then the doctor opened the door, “so do you have any questions?” I had waited the entire visit to bring this issue up… “will it be okay if my Dad takes Claritin for the bone pain?” Caught somewhat offguard by my obviously informed question, he replied, “of course,” and mentioned another name or two of other pain killers. My Father looked at me confused as to what I just did, but with the doctor agreeing with me, I just told my Dad, “trust me, we will talk about it later.”
Again, I want to be clear, I AM NOT TELLING YOU OR ANYONE TO TAKE CLARITIN. Take the information that I am sharing with you, and bring it up with your doctor. Chances are good they will agree. My father took a Claritin the day before the injection, the day of the injection, and the next two days after the injection, and my father felt no pain. It needs to be noted, if you do not start soon enough and stay on it, there is no getting on top of it at that point, just having to ride it out until the pain stops. Claritin works for most patients (there are some it has not), because as an antihistamine, it blocks histamine, a chemical that can cause inflammation and swelling in the bone marrow, which causes pain.
Again, regardless what cancer you may be dealing with, if a white cell booster is part of your treatment plan, make sure you address this issue with your oncologist.
Paul's Heart 