Friday, April 22, 2016

Cytoxan Round Seven - Health Update

Chemo round seven was a bit bumpy. As you know I stared showing severe allergic reactions my six infusion; facial swelling lead to Epi Pens, IV steroids, and a change to my Cytoxan dosing to see if we could keep the reactions to a minimum while still perusing treatment. We were all geared up for a reaction to the Cytoxan with meds on standby to push just after the Mesna (bladder protectant), but right before the Cyotxan, and to our surprise within a few minutes of running the Mesna my eyes started to swell shut and my lips got huge and red!
Turns out I'm allergic to the bladder protectant, not Cytoxan.

Being silly in my pink wig at round 7!
While this seems like a better alternative, it is actually not. Cytoxan if used without Mesna results almost 99% of the time in bladder cancer, which is something I really don't need. Sometimes even with Mesna it still causes bladder cancer. You absolutely need Mesna when using this chemo and unfortunately, there are no alternative medications to substitute its function. Luckily, within seconds there were three nurses in the room slamming me with antihistamines, keeping the reaction from going systemic -- I did have a swollen eye for a few days after though! I am not sure where this leaves me for in my current treatment plan as I am suppose to have 12 Cytoxan infusions and I have only had 7. I have a call out to my doctor regarding the situation, so hopefully I will hear back soon! Other than that, the infusion and the few days after went relatively smooth. Since I am now receiving half my original dosing I didn't puke at all! Hallelujah! I was so sick of picking for a week every month. I did however still feel horrible and slept for 4 days straight! Since we halfed the dosing my hair has been sprouting like a weed which is super awesome. I look a little bit like a hedgehog right now though. Growing out your hair from nothing is really awkward! haha

My oral intake has seriously taken off! I am so excited to say that I now have the ability to eat quite a bit. I'm slowly tapering down my tube feeds and hope to someday get to a point where I can use it as a nutritional help rather than full nutritional support. Unfortunately, my ability to eat isn't perfect and never will be; I still regurgitate and have serve heart burn if I eat the wrong foods. I even got some food lodged in my esophagus the other night. So it seems food will still be "recreational" at this point, especially since I aspirate and cough a lot when I eat specific items. Honestly though, I am grateful for any intake at all! Super funny side note, I couldn't figure out why I had such a bad tension headache over my temples the other night and finally realized it was from chewing. lol It has been so long since I needed to chew something that my poor muscles were overworking! Talk about irony!

In other news, Ill be on a two week heart monitor for a while as I had an episode of Syncope (fainting) a couple weeks ago. While that isn't abnormal for me, my doctors always like to hook me up for a few weeks a year to check on my arrhythmias and tachycardia. Between my Chest Port and all these electrodes I look like a crazy robot who escaped from the hospital.


  1. My nephew, an EMT, posted one of your videos about not looking sick. I watched and reminisced. I consider myself lucky to "only" have had breast cancer. Cytoxan was one of my meds as well, not very user-friendly. Taxotere was another one.
    The injections of Neulasta made my body ache and become rigid from pain for two days. Still, like you, I smiled.
    You remind me of myself. I'm a teacher, too. I teach high school students on the autism spectrum. Maybe it's born within us to teach and inform, because after my diagnosis, FB was my way to make my voice heard about everything that I was experiencing during surgeries, treatments, etc. I wanted others to learn.
    You're doing a fantastic job of living life in spite of your illness. Don't stop until you have to. Keep that fire burning. Your story is an inspiration for others to live and enjoy life.
    Keeping you in my prayers...

    Virginia C @Awl_Relative

  2. Have you checked out The Roadback Foundation?

    Minocycline in early diffuse scleroderma

    David E Trentham

    Christine H Le


     Alejandro Morales


    Article Info

    SummaryFull TextReferences

    Based on its efficacy in rheumatoid arthritis1 and anecdotal evidence, we did an open trial of minocycline in early diffuse scleroderma. Patients satisfied criteria for the diagnosis of scleroderma2 and did not have additional rheumatic disease. Inclusion criteria were clinical systemic sclerosis on the extremities proximal to the elbow and knee and on the trunk below the clavicles, and disease duration of 3 years or less from the onset of the first symptoms, including Raynaud's phenomenon, as determined by the patient's rheumatologist


  3. 'The Lancet' Reports Antibiotics Fuel Remissions, Reversals in Harvard
    Scleroderma Trial
    DELAWARE, Ohio, Dec. 3 /PRNewswire/ -- The successful clinical trial of a
    breakthrough therapy for the often-fatal disease scleroderma has just been
    published in the leading British medical journal, "The Lancet."
    Performed at Harvard Medical School and sponsored by The Road Back
    Foundation and the National Institutes of Health, the study
    examined the effects of Minocycline on 11 patients suffering from this rare but
    increasingly common disease. Written by Drs. Christine Le, Alejandro Morales
    and David Trentham, the Lancet article reports that nine patients improved
    substantially and two-thirds of those completing the study were in full
    remission -- free of all disease activity.
    A painful, disfiguring disease, scleroderma afflicts some 400,000
    Americans. In its diffuse form, it often attacks the lungs, heart,
    kidneys, and liver. It also thickens the skin, causing pain and crippling
    disfigurement. Until now, the disease has been regarded by most physicians as
    untreatable, with two thirds of its victims dying within ten years of onset.
    "Those who finished a year of treatment had clear-cut, demonstrable
    evidence of improvement," said Dr. David Trentham of Boston's Beth Israel
    Deaconess Hospital. "We were pleasantly surprised by the results of this safe
    and highly, highly effective treatment for a disease that previously offered
    little hope."
    "No therapy has ever promised the kind of results reported by these Harvard
    physicians," said Pat Ganger, president of The Road Back Foundation, an
    international organization founded to sponsor scleroderma research and
    education. "Until publication in this prestigious peer review journal,
    patients and doctors have relied upon anecdotal evidence that this safe,
    simple therapy can remit and reverse scleroderma." One of the earliest
    examples of such evidence was Ganger's own case history: she is a recovered
    diffuse scleroderma patient who credits antibiotic therapy with saving her
    Scleroderma joins a growing family of rheumatic diseases proven to respond
    favorably to antibiotic therapy. Minocycline has been pronounced " safe and
    effective" in the treatment of rheumatoid arthritis, with the majority of
    patients reporting substantial improvement and remission rates as high as one
    in three.
    The results of the Road Back Foundation's study are also reported in two
    books by Henry Scammell, "Scleroderma: The Proven Therapy That Can Save Your
    Life" and "The New Arthritis Breakthrough" published by M. Evans, New York,

  4. God bless and be with you beautiful My prayers are with you. My beloved husband and I are differently-abled although we don't look it.

  5. I robot too this week with my heart monitor and PICC! People smile at me more now I have observed when I am in robot mode, as well as myself, because I smile back! The new found happiness in this world of illness shines. Blessings to you and your lovely blog and stories you share. xox

  6. Saw your video on FB about not looking ill...I went through treatment for breast cancer and people said I looked like a movie star- often didn't feel that way with a giant port sticking out of my chest. But I also had fun with the wigs! Much love and prayers for you on this journey <3 Each day we are given is a gift! God bless you!

  7. God bless and protect you. People often tell me "You look great!". During the past 2 years I've had prostate cancer, leukemia, a kidney removed due to a malignant (though non-spreading) tumor and now myelodysplastic syndrome, a malignancy which affects the bone marrow that may/may not be due to chemo (having a stem cell transplant soon to hopefully address it). You're a beautiful, brave woman. May you be healed and live a long, full life.

  8. Saw your picture, read your blog, agree with Steve (above), you are a beautiful and brave woman and I wish good things for you.

  9. I came across one of your videos that a friend had shared on Facebook! I truly believe what my grandmother taught me many years ago. Everything happens for the best and something good comes from everything. Just wasting a few minutes I stumble across your video and now you have another prayer warrior. You are a true inspiration, and our inner strength is helping more people than you can ever imagine! I often end messages I post on FB with a certain hashtag! I truly believe it is never more fitting than here! #cantstop