Multiple Myeloma is an SOB!!!  It can just drive you NUTS!


Multiple Myeloma can be a real SOB.  I seldom write about what is going on with me, because I have been so lucky and truly blessed to still be alive and living on this earth after being given just three months to live at diagnosis.    I have beaten the odds so many times that sometimes I start to feel a bit of the old me coming back to life.  I am not saying that I have not learned a lot about what is truly important in life, but to be really normal you need to be able to just be “petty again”.  If someone cuts you off while you are driving you want to be able to think that he deserves a one-fingered salute, and not to think that this is just not worth even a bit of anguish, because it is not MM.  But just when you start to feel like it is in remission, or that you will beat the odds, MM and its after-effects can just rise up and kick you in the teeth. 

I have been in remission for almost seven years, and I thank my doctors and my maker for every minute of this time.   My numbers have been the same ever since I had my last Velcade infusion some 12 months ago.  On a recent Monday, I went in and my hemoglobin had gone down from 13.6 to 8.6, my platelets had crashed along with white and red blood cell counts, and everything else of worth had plummeted.    Mayo had said that at 8.0,  I would need a blood transfusion.  To say the least my mind went wild.  Had my MM come back, and with a vengeance, in the last two months since my last check up?  Mayo set me up to type my blood for a potential transfusion and to retest the following week. I had also just sent a blood sample into UAMS for them to evaluate the cancer markers.  On that Thursday I found out the good news that my cancer markers had not changed a bit and that I was still in CR. So why the crash?  Not MM with those test results; could it be MDS (myelodysplastic syndrome)?   Some ten percent of  MM patients will develop MDS, and the survival rates for MDS are worse than for MM.   I will have to have a bone marrow biopsy to determine that, but now I am really praying that the mighty Mayo may have made a lab error. Still, I have five more days to wait.  Over the weekend my wife wondered why I was such an emotional mess, when I have been assuring her that the numbers must be the result of a lab error.  Sometimes when you know too much, you know too much!  Monday, I am in at Mayo, and have my blood tested. I have my handy iPad and am signed into the Mayo patient results page, and my results flash on the screen: HEMOGLOBIN 13.6!!!  The mighty Mayo screwed up. I am so happy they messed up, but the week of hell and uncertainty made me remember just how this disease can screw with your head!  Thanks to Zoloft for extra help!  Oh what a relief it is!

Now fast forward two weeks, where I am visiting my family up north in Wisconsin, and having a wonderful Christmas.  My daughter has a cold and my granddaughter has a cold as well and it seems that everyone in the state is hacking.  But I am ready, at the first sign of anything I start on Tamiflu, and then as I start to get a fever the next day (Christmas) I start on my stash of Z-pak.  After the first dose my temp goes down from 100.4 to 98.8, but the next day it is back up to 100.4. The last time I spiked a fever and waited to go in until it got to 103, I ended up in the hospital with septic shock. According to the Sepsis Alliance, 40% of patients diagnosed with severe sepsis do not survive. This number is greater for septic shock and a lowered immune system from MM makes it even higher.  So this time we went in just as a precaution.  At the Janesville, Wisconsin Mercy Medical Center Emergency Room they took tons of tests and determined I had pneumonia.  They put me on an antibiotic drip, gave me a shot in the rear, and another antibiotic prescription to take in addition to the Z-pak.  The next day  my temperature was back to normal. 

One of the reasons that we went when my temperature was 100.4 is that at the last IMF support group meeting the group leader, who went through a similar situation to what I describe in this paragraph, recommended that we not wait until 101 as most doctors recommend, but rather to go in at 100.5.  I listened to her because she recently lost her husband and my friend from their episode.   So her advice to be extra vigilant saved me from a long-term hospital stay at the least, and who knows what at the worst.  If there is any take away from my story, it is that you should always, always err on the side of safety!

The immune system responds to invaders by kicking out antibodies to fight infection, and it increases the body temperature to assist in the fight.  If you have a compromised immune system, you can expect that the bacterial load would be much greater to get the same response.   In other words, you may be as sick at 100.4 as a normal person at 103.  This is not scientific, but in this way I can understand that there is a real reason for, and benefit of, an MM patient going to the doctor with a temperature much lower than that of a person with a normal immune system.

A recent Swedish study reported that multiple  myeloma patients were found to be 7.1 times more likely to develop a bacterial or viral infection than the general population.  The risk was especially high during the first year after diagnosis where the rate was 11.6 times that of the general population. Without a robust immune system, I would suggest all myeloma patients ask their doctors for a prescription for Tamaflu and an antibiotic so they will be available when needed.    Like our support group leader suggested, “Act at 100.5 to stay alive!”

Happy New Year and may God bless all who are on this myeloma journey/ Gary Petersen editor@