Joanne Fillmore Nielson
Kidney Cancer Warriors Support Group Member
Joanne1 on KCW/Chat
My name is Joanne Nielson. This is my journey with RCC which started in 1997.
I was feeling nauseous and sometimes couldn’t eat supper; but, always a few hours later, I was okay and could eat dinner. In one week, I had lost 9 lbs. I went to the doctor and he wanted to do some tests but we had since found out we were moving back home to Canada. At the time, we were living in Crossville, Tennessee. I was 39 years old. I didn’t want to do multiple tests when I would have them done again in Canada so I waited. We moved back home in March 1997. I had gained my weight back and was feeling fine. When I went in for my physical in July, I just mentioned to my doctor what had previously happened in Tennessee. He asked if I had ever had a stomach ultrasound done. I had not and he arranged one. As I was feeling fine, I totally did not expect what I was told. A mass on my left kidney. It was also noted that they thought it had metastasized to my other kidney and my liver. A CT scan confirmed just the one mass (thank goodness) and I had my kidney removed August 1997. My doctor came in after my surgery and said he felt I was cured but would confirm when the reports came back. My tumor was totally encapsulated and had not spread. I was cured!!! I was followed for the next five years.
February 2008, I had a cough (not a bad one at all but it just would not go away). Almost like a tickle. It would come and go. Not a coughing spell. I would maybe cough once in the day and then maybe not cough for a few days. It was really strange. I would not normally go to the doctor for something like this cough; but in May I thought I best go. I was first treated for post-nasal drip. Then a puffer. Then for acid reflux. Everything that could possibly make you cough. And I had to give each treatment a month to see if it did anything. My doctor always listened to my lungs and everything sounded fine. So in September, I had a sinus and chest x-ray and an abdominal ultra-sound. This was done on a Friday. Monday I had a phone call from my family doctor to come in, which I knew was bad news. I had a small lump in my neck that I was concerned about also. My chest x-ray showed a mass around the lung area. They didn’t know if it was in the lung or not. I met with an internist on the Wednesday and the next day I had a CT scan done and a bronchoscopy. The mass was not in my lung. It was in between my lung and pulmonary artery. It was still 50/50 whether it was cancer or not. Also had an appointment with an ENT specialist and that lump is now gone. We did lots of tests and biopsy of the lump in my neck and it came up clear. My next appointment was with a thoracic surgeon. He would not do a biopsy. He felt it was too dangerous to perform due to the location of the mass. Next appointment was with an oncologist at our cancer clinic. He said I needed to have a biopsy to determine if it was cancer or not. He called in the head of thoracic surgery from the same hospital where I saw the first thoracic surgeon. He was very confident in doing the biopsy and, if I was his wife, he would suggest I have it done. So in November, I had a mediastinoscopy which confirmed clear cell RCC. Within a couple of weeks, I had an appointment with a kidney cancer oncologist and I soon began my life with Sutent.
I started Sutent January 2009. I remember taking that first pill and laying awake afraid to sleep for what it may do to me. I look back now and laugh. I started with 50 mg - 4 weeks on, 2 weeks off. My only side effect that month was my very last day of the Sutent cycle my blood pressure shot up to 185/110 so off I went to emergency. I told my oncologist I was just so excited to get through the first cycle at 50 mg that my blood pressure shot up. I am now on Norvasc to control my blood pressure and do not have to be on it all the time. I have had all the typical side effects. Fatigue…I take B-12 supplement daily and B-100 complex, taste buds off (sometimes), tender mouth and gums (sometimes), tender and sore hands and feet, hair colour change, fluid retention, acid reflux (on nexium). All scans (done every 3 months) showed shrinkage.
November/December 2009, I felt the 50 mg of Sutent was starting to take a toll on me. I told my doctor I wanted to drop to 37.5 for now. November scan showed stability. I was always cold (usually I’ve always been hot), my blood pressure was too high even with medication, I was retaining a lot of fluid and medication wasn’t helping, I had a “man” voice, muscles were very weak, weight change, bowel problems, fatigue. A lot of these could be traced back to a side effect of Sutent. Because of the fluid build up in my face, my family doctor thought maybe the tumor was pressing on a vessel. I had a call from the cancer clinic and wanted me up there because this could be a medical emergency. I met with a radiologist/oncologist and he said it wasn’t an emergency, he couldn’t see any bulging veins. And, of course, my blood pressure was through the roof (212/118). White coat syndrome I told him. He gave me two choices. Do nothing or have radiation. I had nothing to lose and everything to gain so I chose radiation. We know radiation does not typically help RCC but it was worth a try. So I had intense radiation 4 days before Christmas and one day after. This was not on my Christmas list. Short term side effects were fatigue and acid reflux. Already had that with Sutent. Next scan in February 2010 showed shrinkage. Whether it was Sutent or the radiation we will never know but I was thrilled. In February 2010, I asked to have my thyroid tested. It had last been tested in September 2009 and was fine. In that short period of time, my thyroid function had gone out of whack. My oncologist does not know how I was even functioning it was so off. I’m on medication now and have lost 10 pounds, voice is back to normal, blood pressure is so good when it’s suppose to be (it climbs gradually while on Sutent), back to my warm self and not cold, muscle weakness is gone, bowel problems are fine. I am getting it retested again this month. This last cycle of Sutent has been amazing compared to previous ones. Next CT scan is in June.
I am 53 years old and have been married to my wonderful husband for 24+ years. Our 25th anniversary is in November. Our pride and joy is our precious daughter who will be turning 23 years old. Hard to imagine. She was born 10 weeks early and you’d never know it. They have been unbelievable throughout my journey. My husband comes with me every doctor visit and our daughter comes as much as she can. I have a lot of support through family, friends, and work. My oncologist is amazing. This is not the same doctor who performed my radical in 1997. I work part-time at a pharmacy. I played soccer up until last summer. I’ve decided not to play this summer as the fun was gone from it. It is turning into a serious game and was started up years ago as an over 30 league with no standings or scores. I walk 8 km. at least 3 times a week. As you can see, I am still living my life as I was before cancer.
I like the phrase, “I have cancer, it does not have me”, or “I am living with cancer, not dying from cancer”. I also like the fact that they are saying kidney cancer could be classified as a chronic disease like diabetes or a heart condition.
My message to anyone out there with RCC is to not stop at the 5 year mark or 10 year mark. Please insist that you are checked yearly for life. I am coming across a lot of people whose RCC has returned many, many years later.
I truly believe they are going to come up with a cure in my lifetime. I plan to be around for many, many years!
June 2010 Update…had my CT scan this month and results showed a slight increase. My doctor wanted to know if I wanted to stay on 37.5, switch to a new drug or go back on the 50mg Sutent. I chose 50 mg and that is what he hoped I would choose. This is my first tumor growth since the beginning. Hopefully the full dose will knock it back again. It WILL knock it back again. We just spent the weekend in Tennessee and when we left I said ~ I left my tumor there because that is where this whole journey began in 1997 and it’s only fair I leave it right where it came from!
July 27, 2010 Update: To lessen the side effects, I am starting 50 mg of Sutent, 2 weeks on, 1 week off starting August 2, 2010.
Joanne Fillmore Nielson
Canada
No comments:
Post a Comment