Written By: Debbie Field
Hi my name is Debbie Field, I am the caregiver/wife to my husband Mike. He is 48 years old and we live in Jacksonville, FL. We work together running a small construction company and a small 5 acre Horse farm. We have 2 beautiful daughters, ages 16 and 17, and we stay very busy trying to keep up with their social lives!
Our story really started before we knew it did. On December 20th, 2006, Mike fell off a ladder from the 2nd story of our warehouse and shattered his heel. He was 45 at that time. During the pre-op they did the usual chest xray and we were told that there was "something" there that needed follow up. He was sent for a CT scan where there were about 20 lung nodules. He then was referred to lung specialist that said this is definitely not lung cancer, so if it is a cancer we need to find out where its coming from. In January 07 he did a PET scan and we were told that the nodules were not active and there was no tumor anywhere and the spots were probably a benign lung infection. Recheck in 3 mos. In April 07 he did another CT, all "spots" were bigger, another PET scan and now they are active and they also remark how much the kidney tumor has grown since January. Apparently they just failed to note the kidney in January. Minor detail.
Tried a couple of biopsies, unsuccessful. Removed right kidney in 6/07 by laparoscopy surgery. Very easy recovery. Left hospital after 4 days. Pathology shows clear cell Renal cell carcinoma with small components of Papillary.
He began Sutent in 6/07 and stayed on it until 6/09. He had a really good response to Sutent and was declared in NED at one point. Then they reduced his dosage and things started to grow, so he went back up to 50 mg and it worked for another 7 - 8 months before failing. He had the usual white hair, hand foot syndrome, mouth sores at times, but really did most everything he wanted to do. As he got closer to the end of the 4 week cycle side effects got worse and then mostly subsided during the break.
After Sutent, he went to Afinitor for 2 months with no response.
He then went to Avastin/Interferon combo where he remained stable for 6 mos.
He then went to Torisel where he was stable for 6 mos. During the time on Torisel, we found a doctor that would offer him HD-IL2 and he began doing all of the testing to make sure he had clearance to start it and he did. The scan in July was a mixed bag, some growth, some shrinkage, and some necrosis. But we decided to go ahead with the HD-IL2.
He did his first 5 day round mid August. He gained an incredible 54 pounds in fluid, had some breathing issues due to the fluid accumulating in the lungs, rigors were pretty bad but passed quickly with Demerol, and had low blood pressures which they treat with fluids, but recovered pretty quickly during his week off. He was able to complete 12 doses out of the 14, but had to stay in the hospital for a total of 9 days while he waited for some of this fluid to resolve.
He went back for week 2 at the end of August. Immediately started with bad rigors and low blood pressures. They kept giving him extra fluids and after the 5th dose he went into Acute Respiratory Distress Syndrome and ended up on a ventilator for almost 4 days. And they stopped the treatment. He gained 35 pounds this time, still an incredible amount I think.
He will scan on 10/6 and we will find out if he got any benefit from it.
He is felling good now, and is pretty active. He has to take naps every now and then, but for the most part feels really well.
If you're on this journey, hang in there, it will be a bumpy ride. But everyday is different. The best thing you can do is to learn about this and take your health into your own hands. Don't settle for answers that you don't believe or don't seem right. There are a lot of people out there that have saved their own lives by being informed and proactive.
Hang in there and FIGHT!
Debbie Field ~ caregiver to Mike
Florida
Sadly, Mike passed his kidney cancer torch to those who continue to fight and earned his Warrior Wings on June 11, 2011. He will be sadly missed by his wife, Debbie, daughters, family and friends. Our condolences go out to Mike's family!
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