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Long-term Maintenance = Active Cancer Treatment

October 6, 2010

Methotrexate reminds me that Isa is a cancer patient.

For the most part she has tolerated the medications well, but today I see the ramifications of treatment.  Small bruises pop up here and there. Isa complained of a mouth sore. The mucosal linings are damaged by the drugs, so nose bleeds, bleeding in the intestinal tract or at the anus are common. The hardness or softness of the stools can be a big issue.

Everyday that I spend with her I am grateful, but yesterday as she sort of hobbled slowly over to the car door for some unknown reason, I was reminded of her smooth hairless head,  rounded belly and weak legs. I told myself, “You may be irritated with her moving slowly, but BE PATIENT, remember she could be so much worse.”

The first day or two after her 100% dosage of methotrexate causes her some tiredness as well as the conditions I mentioned above.

On top of all the regular medication side effects, Isa has coughed, and coughed over the past few days. I have no idea why. She has very little nasal drainage and no looseness in her lungs. You tell me.  I call it Leukemia cough.

Thanks for reading, keep the prayers coming, we’re still using them everyday.


8 Comments leave one →
  1. Pat Horvath permalink
    October 7, 2010 3:08 pm

    My heart is heavy thinking about all you and family goes thru. that previous Isa. How she can continue trying is only a mircle. Yes, Prayers, for everyone in your home, is a pleasure. Blessings and Much Love, patricia

  2. October 7, 2010 10:22 am

    Thanks for the update. Still praying for your sweet girl…

  3. Quinn's mama permalink
    October 6, 2010 11:03 pm

    Quinn’s methotrexate was increased too. I saw a noticeable change in everything from rashes, and energy to behavior. It is crazy to me that the new protocol will DOUBLE the dose for some kids. 40mg of tht nasty stuff seems unreal. My co-worker took 5.0mg for her lupus and refused to take it after the second week. She said she would rather suffer with lupus than be on that “horrific drug” as she called it. She said that she felt dizzy,weak, like she was living on the Disneyland tea cup ride that never stopped. After hearing an adult that I respect , who is one tough person describe the effects of the drug made me have even greater concern about the effects of the drug. I am actually sometimes thankful for the steriods. The other weeks without the steriods she doesn’t eat for about three days after she takes the Methotrexate.

    I hate cancer.

    • October 13, 2010 4:26 pm

      I don’t know anything about the new protocol. Quinn isn’t on ALL 0331 is she? Isa takes 13.75mg once a week, I think. Sad, but I’ve gotten so lax about the dosages. I check them when they give us new prescriptions, but my memory for them has gone. The gratitude toward the steroids I do understand. I have noticed that exact scenario with Isa. She will be famished on the steroids and then by the end of the month hardly eating. My guess is that a lot of the behavioral issues I am dealing with are caused by both the steroids and the MTX.

      • Ann Brown permalink
        October 14, 2010 5:00 pm

        Elke is on 0331 and is on a 50% dose of mtx currently: 7.5 mg. She hasn’t been on a full dose in at least 5 months. The stuff is nasty. We have to give her Zofran with it, or she will writhe around and whimper in her sleep, and sometimes the nausea even wakes her up. I have to give her serious anti-emetics for days afterwards.

        Nasty stuff. I agree that I can’t fathom how Elke would tolerate the new protocol that’s replacing 0331, with its doubling of the mtx dose. Of course, the reduction of the vincristine and dex to every 12 weeks would have been nice…..

  4. ALT permalink
    October 6, 2010 10:30 pm

    Still praying. I love that you remember to enjoy every minute. We miss you and the girls!!

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