Leukemia or Drug Side Effects?

It seems that every single day presents itself with a new challenge. One thing that I have noticed for sure is that I can never actually figure out whether what I am feeling is a side effect from my Sprycel (Dasatinib) or from my leukemia. I suppose when it comes right down to the bottom of it, it really doesn’t matter all that much.

Of course my every day, overall feeling has certainly changed since being diagnosed with leukemia six months ago. Almost every single day I feel as though I am coming down with the flu, you know the overall achy, maybe I have a fever feeling; that I am becoming accustomed to. I am also getting used to the pile of hair on the floor every morning. That has become smaller since I cut my hair. The chronic fatigue and heat intolerance is also now, just a part of life.

The intermittent issues are probably some of the worst side effects; the bone pain, the mouth sores and the skin rash, really suck. Luckily they do not occur every day. However, for the past week, I have had two mouth sores; they are killing me. I have a teeny, tiny one on the very tip of my tongue and one on the side. They are so small that you can barely even see them; yet they hurt so much that I cannot even sleep. Talking is also an issue; the one on the tip of my tongue makes me sound like a drunk, slurring my words. I never realized how important the tip of my tongue was until I had this teeny, tiny little bump on it. Eating is also a huge challenge. It totally sucks when two of your favorite past times, talking and eating, cause you pain.
After the first two days, I decided to try Campho-Phenique; it is a topical antiseptic used to temporarily reduce pain in minor cuts, scrapes, burns and insect bites. I remember my mother torturing me with it as a child. It tastes horrible, but does offer some relief. I used the Campho-Phenique and Ibuprofen but still could not get the pain to subside.

Happy 18th, Kevin!
Despite my achy-breaky mouth, I decide to go to the desert for a few days to visit my family. Of course, I was hoping that my dear mother had a miracle cure, as she too suffers greatly from mouth sores, due to her medication. My mother, my hero, DID have a possible cure. She had an entire bottle of Nystatin on hand and I began to use it, after first checking the drug interactions with Sprycel; to make sure that it was alright. It burned like crazy, but is supposed to coat your mouth and help to heal your sores.

Later that night, my brilliant mother brought me some maximum-strength Oral-Jel…can I just say “Duh” right now? How stupid am I? Ora-Jel totally “numbs” the area for quite some time. Any of us that have had children know about Ora-Jel, right? I am now in heaven! I slept four hours straight last night, re-applied the Oral-Jel and slept for four more hours. Hopefully, the Nystatin and the Ora-Jel combination will quickly return my mouth to working order.

Thank God for mothers! Good-bye Campho-Phenique: Hello Ora-Jel!


  1. Michele... So sorry you are dealing with this..you are so brave and gallant in your descriptions and are an inspiration for all of us. Re: the mouth sores, please try the Homeopathic liquid remedy, Tincture of Myrh.. It is AMAZING for mouth sores....Just dab it on them.. Hurts like hell, but will heal them!!

  2. The mouth sores are common, but that makes them no less painful! I would try your friend homeopathic remedy, but keep Orajel around too! You never know, and honestly, not sure "I" would have "remembered" orajel either! Thinking of you with love and Prayer Michele, my belle!
    Always, Julia

  3. Thanks guys, and Kim, I think that I will be giving that a try!

  4. I have the mouth sores also and my family doctor prescibed a mouthwash of nystatin, tetracycline and benadryl. He called it "magic mouthwash". I use it now two or three times a day and my mouth is 100% better. I'm not sure if it would interact with your Sprycel or work for you but it might be worth a try. Good luck with the mouth sores I understand how maddening they can be.

    Ps. Before I got the mouthwash I basically ate cereal only for two years straight.

  5. My mother gave me some Nystatin three days ago and I am MUCH improved!

  6. Michele

    Mouth Sores, Ulcers etc.
    Use a product that was designed for people with immunity issues such as Aids, HIV etc and was trialled on leukaemia patients. This is the most fantastic stuff - you can buy on-line - an Australian patent. It is called Denta-med. You can use as a toothpaste or you can dab inside of mouth walls, gums and sores, ulcers. I use all the time. www.denta-med.com.au

  7. Thanks so much. I shall give it a try! These mouth sores just won't stop popping up!

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