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Patient Stories

Voice of Kidney Cancer – Maggie and Ron

Voice of Kidney Cancer – Maggie and Ron

Maggie shares the story of her husband’s diagnosis with Type II Papillary Renal Cell Carcinoma.  Is it ever really gone?

On a Saturday morning, April 14, 2018, the phone rang, Caller ID showed, Mercy Hospital, Joplin, MO.  This is odd, since we live in NE Oklahoma, I ignored the call, let it go to voicemail.  Then, Ron’s cell rang – Hospital from Joplin, then I remembered, his urologist works at that hospital once a month.  Oh, it can’t be good news, doctors never call on a weekend with good news.

Those words “there’s a new tumor, and its larger than the others”, causes your breathing to stop. He described the location and that it was discovered by the radiologist.  Dr. Doyle explained the next steps we needed to take.  Ron would get a biopsy, and then, schedule an appointment to see the oncologist, Dr. Cole, who specializes in Kidney Cancer.  I went numb, did I really hear him correctly, let me look at my notes I just took, perhaps, I didn’t hear him correctly.

We had just seen Dr. Doyle two days ago, on Thursday, April 12, 2018.  The appointment with Dr. Doyle was not out of the ordinary, it’s something we do every 4 months, since Ron’s partial nephrectomy.  Since he didn’t detect the new tumor, or mention increased growth, we thought we were in the clear for another 4 months.  But those thoughts quickly ended when we heard his voice on that Saturday morning.

I’m not sure which period of time is the worst, I can’t say, because I don’t believe I have lived it yet. But I can tell you, your heart drops, as each day passes, wondering, hoping, waiting, praying, certainly the unknown, it’s scary.

We had to wait 12 long days, until the biopsy could be scheduled. Finally, the day arrived, and I took Ron to the hospital.  The procedure went well, his lung did not collapse and his heart is ok.  It’s time to wait again, we would meet with Dr. Cole, in six days.  On May 2, 2018 we met with Dr. Cole, and he informed us the biopsy was successful, and he confirmed the diagnoses, Ron has Stage IV, Type II Papillary Renal Cell Carcinoma.   Dr. Cole recommended that the best plan of action was to qualify for a Clinical Trial.  The challenge of meeting the criteria could be difficult for Ron considering he has Congestive Heart Failure and a history of battling high BP.

Once again, God’s Grace is at work, and Ron did qualify for the Clinical Trial.  On May 14, 2018 Ron began Savolitinib, 600mg, which he takes daily.  Ron has been on this trial for almost 9 months, and I’m grateful for the medical team at OCSRI.  The side effects have been minimal, but recently he has been experiencing edema in his hands, arms, ankles and feet.  At this time, following the recommendations of the research team and Dr. Cole, he will stay on Savolitinib for as long as he can tolerate it.  The tumors are growing, but at a very slow rate.

The journey as a caregiver is not easy, and at times it can drain every ounce of life out of you. What is important, is that we can learn from one another and we can support each other.  I love my husband with all my heart, and I am here for him.  I may never know what its like to be told – “You have Cancer”, but I know exactly how it feels to hear, “Your Husband’s cancer has spread, its stage IV, and there is no cure” or to hear the oncologist say “don’t worry about your heart anymore, the cancer will kill you” – these are tough words to hear, but my responsibility is to my husband, first and foremost. I want him to feel my love and my support. It’s my personal goal to be the best advocate I can be for him.

KCCure thanks Maggie for sharing her husband’s story.

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