[Angela Elliott]

Thank you for bravely sharing your story. My own husband had high risk MDS which evolved into AML and the induction chemo was not sucessful, and given his deconditioned state, he was not a candidate for another round or for a clinical trial, so we brought him home where he died 18 days later – july 5, 2018.

Reading your story makes my heart joyful that you have had more days than you’d hoped together and I hope that there are more in the future than you can imagine right now. You and he both have shown such great courage and persistence in how you’ve traversed this.

My best to you both, and for the time and the love you share, now, and always.
angela elliott

p.s. I still come here to read about how people are doing or if there are any new developments in treatment.

[Angela Elliott]

Hi everyone. I’ve not been on this board much since my original post on this thread, but just wanted to “close the circle” by posting one more time.

On the day that my husband (aged 69) was to have begun his 3rd round of Vidaza, his blood counts showed his WBC to be extremely high. A bone marrow biopsy showed that he had gone from 14% to 53% blasts, even with two cycles of Vidaza so he had progressed to AML. He began in patient chemo with Vyxeos and had some very serious side effects which almost cost him his life (10 days in ICU with severely infected skin lesions and respiratory distress and atrial fibrillation).

Long story short, at the end of 42 days in the hospital, we learned that at 30% of stem cells that had returned, 40% of them were leukemia. We brought him home on hospice where he lived for about 14 days, surrounded by kids and grandkids, and he died on July 5th.

Obviously, I’m heartbroken (as is all the family) but grateful that he died as comfortable as possible. He was responsive (lucid periodically, able to verbalize) until about 2 days prior to his passing.

I wish all of you courage and strength in your treatment. I still have doubts about if we did the right thing stopping his blood transfusions once we got home, but the cancer was so incredibly aggressive and he was so weak when he got home (after over 6 weeks in the hospital) it would have been difficult to get him to a clinic for blood work and then to an infusion center every week for a transfusion. I guess I will second guess myself for a long time, but ultimately, the AML was overpowering.

peace to you all
angela elliott, loving wife of Richard Vallandingham 1949-2018

• This reply was modified 5 years, 9 months ago by Angela Elliott.

[Angela Elliott]

Hi Lee, thank you for sharing your story. my heart goes out to you, i’m in a similar role now as the spouse and i have to wonder how much time i have left with my beloved. He is considered “high risk” in that the blasts were at 14% when he was diagnosed. he has just completed his second cycle of chemo shots. we were told by the oncologist that he would be tested again (bone marrow biopsy) after the fourth cycle.

So– here’s a question, and of course I’ll ask the oncologist this as well, but we wont see him for another couple of weeks. Who becomes eligible for stem cell transplant, those for whom the chemo is working (and who have SC matches?) I asked my husband why aren’t MDS candidates just immediately “fast tracked” into the SCT in that it is the only treatment that has the potential of coming closest to a “cure”? (Although I realize there are a host of issues within SCT and afterwards as well).

[Angela Elliott]

Thanks all, for your thoughtful and kind responses. I made the decision to resign my job so I could be here to hopefully assist my husband in regaining some strength (following his 16 day hospitalization) and to be here for his treatments, dr.’s visits, and hopefully SCT if he is a candidate. At the very least, if he is not, I want to be with him for as long as possible. Were we to live to 105, it would still not be enough 🙂

My thoughts are with you all,
angela

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