Life Just Cant’ Get Any Weirder For Me

I received a phone call Friday, January 27th, from my oncologist. He woke me up. Let me share that this is a first for him to call me randomly like this. Needless to say, I was instantly awake and ready to hear what he had to say. The adrenaline rush was on.

He said an irregular lab value showed up on my two year tests performed in December 2016. Specifically, the ferritin level is high. He stated it was over 1600. The highest it should be is about 340. That is about 4.7 times higher than it should be.

So doc, what do we do about this high ferritin level? You ready my friends? How about a good old fashioned blood letting. Maybe I’ll go to the Roman Vomitorium after I visit the leech room. It just sounds barbaric.

So here’s the plan. I’ll undergo “therapeutic phlebotomy” for 6 months as a starter regimen. That means they will take out approximately 1 unit of blood (about 1/2 liter, or 500 mls) each month for six months. The body uses ferritin to help build new red blood cells. By forcing the body to have to build more RBC’s, it will start to lower the ferritin levels. That is the goal, anyways.

What are the side effects of too high of ferritin?

  • stomach pain
  • heart palpitations or chest pains
  • weakness
  • joint pain
  • fatigue

I have every symptom. The stomach pain hasn’t been too bad, but it does happen, but mild. The chest pains have been like a tightness in the chest. The joint pain has been acute. I blame it on arthritis, but maybe this is the cause? My knuckles are currently swollen and the left knee has been giving me problems for a week now. Fatigue and weakness are my constant companions, to the point I figured they are normal for a post stem cell transplant patient. But maybe that can improve.

So what exactly is ferritin? Ferritin isn’t iron directly, as much as a protein that mammals produce that stores to iron for later use. Each ferritin protein stores about 4,000 iron molecules in the liver and the immune system (reticuloendothelial system). When the body needs more iron for RBC production, these little taxi cabs called transferritin show up and escort the ferritin to the place where RBC’s are made. Then the iron is transferred over to the RBC’s and walla, less ferritin in the body. Regular blood letting will force myself to make more RBC’s more rapidly, thereby reducing the amount of ferritin in the body.

Guess who JUST crossed the line from anemic to normal red blood cell count in December 2016 at his two year post stem cell check up? Yep, yours truly. I was so proud of my body. I have been anywhere from weakly anemic (not enough red blood cells) to powerfully anemic since July 2014 when the chemotherapy began.

My anemia is the reason for my high ferritin levels. I received blood transfusions during chemo but not that many with one exception. A stem cell transplant doesn’t heal because of stem cells, it heals by using chemo about 4 times the amount necessary to kill a body. What keeps the person from dying overall is the constant blood transfusions and the stem cells infused into the body at a specific time intervals after the hyper amount of chemo is infused. The chemo overwhelms the cancer and the body, the body is rescued by blood transfusions and stem cells. The cancer dies, the body stays alive. This infusion of blood products is the reason for my high ferritin.

Time to become anemic again. Actually though, the fella on the phone who called to set up the “therapeutic phlebotomy” (good old fashioned blood letting in my parlance) stated I should not become anemic during this process. We’ll see. I’ll believe that when I see it, although it does sound reassuring. Call me a skeptic.

These procedures will take about 40 minutes each time. I’ll go in, an IV will be started, and they will begin to suck blood (therapeutically release) out of my body gradually. He told me to drink and eat well before each session. That won’t be an issue, judging by my gut.

After six months, we will reassess this situation and possibly stop or possibly continue, based on my ferritin level. I tell you what, life just can’t get any weirder for me. I mean, I guess it could (this is not a challenge!), but seems I’m experiencing it all.

I’ll keep you all posted.

If you want to see my “day zero,” when I received my stem cells, click this underlined part here. Be sure to watch to the end to get a good laugh about “grandma tan’s cookies!” You’ll be glad you did.

And prepare yourself, for Zoe Memes return on February 6th, 2017! Watch the movie trailer here!

About Robert I Baxter

Greatest Commandment is #1. Follower of Jesus, husband, father, RN, love photography, cancer survivor of Burkitt's twice (2008 & 2014). Stem Cell transplant November 2014. Work in a neonatal ICU.
This entry was posted in burkitts, cancer, lymphoma, stem cell transplant, Uncategorized and tagged , , , , , . Bookmark the permalink.

1 Response to Life Just Cant’ Get Any Weirder For Me

  1. Beth Hearlihy says:

    This is the second time in two weeks I have heard of this procedure. A friend’s adult daughter had been experiencing the same symptoms (no cancer) and is now going to have this same procedure. She is feeling better but they are telling her that her smoking might be part of the problem. Keep us posted.


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