Richard Wheeler (ROW)
In late October 2009, I came down with a cough and went to see my physician. As my wife was suffering from the same thing, we all assumed it to be a sinus infection and I was prescribed accordingly. The next week, my cough was no better. I returned to my doctor. He examined me and decided to get an X-ray of my chest. By the time I returned to his office, he was looking at the X-ray on his computer. He showed me spots in the bottom of my lungs and said “those should not be there”. He immediately called in a pulmonary doctor. They agreed that I needed an immediate CT Scan and it was scheduled for the next morning.
I got the scan and the following day returned to the Doctor only to learn that in addition to the spots in my lungs, there was a tumor in my kidney. The following day I saw a urologist who in turn immediately sent me to an oncologist. I was scheduled two days later with the head of Oncology at Kelsey-Seybold in Houston. At that visit, I was told the results of the tests were indications of kidney cancer. He wanted to have a series of MRI’s done to check my brain and other organs. He also felt it necessary to schedule a biopsy on my lungs. The Doctor explained that the lung biopsy was less invasive then to go directly into the kidney. Also, the lung biopsy would provide us with the information he was looking for - whether or not what was in the lungs was sourced from the kidney. In the time between November 9, 2009, when we first had the X-ray, and November 30, 2009, I had been though a complete evaluation of and diagnosis of Renal Cell Carcinoma that had moved into the lungs.
At our meeting with the Oncologist on November 30th, both my wife and son went to the doctor with me. I began keeping a journal of what we were being told and what would occur over treatment. Our Oncologist, Dr. Patel, gave us a very clear explanation of my diagnosis and how he felt it would be best to treat. In addition, he gave our family all the time we needed to ask questions. More importantly, he gave us clear and understandable answers to our questions. Dr. Patel said that normally he would recommend an immediate surgery to remove the kidney, either all or in part, and then follow up with some sort of cancer medication. In this case, with the cough being what it was, and the history we had from previous X-ray’s and CT Scans, he suggested a different attack. I might add here that over the past fifteen or so years, I had an annual physical. Four of those years were done at the Cooper Clinic in Dallas where they had began a process of open MRI tests that mapped any changes in the heart and other organs. We knew that as far back as 1998, I had some small cysts on my liver which currently had shown no growth. In addition, I had a complete physical with an X-ray sixteen months prior to my diagnosis and at that time, the lungs were clear. Dr. Patel felt that as the mets in the lung were small but many, I should undergo two full rounds of chemo treatment prior to the surgery. He explained that over the past six years or so, several new drugs had been developed to help fight kidney cancer. His suggested Sutent as the treatment of choice and he wanted me on three weeks of 50mg daily, the fourth week taking 50mg every other day, and the fifth and sixth week off the medication. He recommended two full rounds of this prior to a surgery to remove the kidney. We agreed with his plan of action.
The next most important thing that my wife Sheila and I did was we got online and began to search for all we could find out about kidney cancer, Sutent, and how we could talk to people that were living the same diagnosis. The computer age is a wonderful thing, as it opens up so much information to you that can be researched in a few days of diligent searching. We first found out all we could about Sutent, the side effects, what type of results were being obtained, and how it worked. While our doctor gave us good information, we wanted to find people living with kidney cancer and taking Sutent and learn their experiences. By accident, we stumbled onto the Kidney Cancer Association Facebook Fan Page and soon were reading everything we could find posted there. Next, I found a gentleman that had posted his own blog of his experience since being diagnosed and communicated with him. He was about four weeks ahead of me in diagnosis, and had already had his right kidney removed. I was able to learn firsthand the degree of discomfort he went through during the surgery. In addition, he suggested, if at all possible, to have the surgery done by laprascopy.
Our next venture into the internet led both my wife and I to a chat room that was noted on the Kidney Cancer Association Facebook Fan Page. We went to it and began participating. As luck would have it, some issue came up and one night we went to sign on and it was gone. We kept searching for it, and a few days later we found on the KCA Facebook Fan Page direction to another chat room replacing the chat room that had been shut down. There was some issue with it we did not understand then or now. We both immediately signed on to the chat room and found Leigh and Allen running a chat for kidney cancer patients and their caregivers. Right now, I want to say of all the information that my wife and I have researched, the information that we got from these wonderful people that attend this open discussion every weeknight was and has been the most valuable we found. I cannot say enough good things about Leigh and her husband Allen (who is the patient) and the help they have given Sheila and I. Also, in this chat room is Pam, another patient. These three (Pam, Leigh and Allen) have consistently been there every week night to field questions and help through the steps you take when you are diagnosed and begin treatment. Every night these three wonderful people have been there to support us “newbies” to kidney cancer. They live it - Allen and Pam, as patients, and Leigh as Allen’s wife and caregiver. Without this chat room and a way to communicate with all the others that have signed on and shared their experiences, we would have been lost. I just want to say thanks once again to all of you for the help you provide us and others that get this dreadful diagnosis.
So back to the treatment. I began Sutent December 3, 2009. For the first week or so it was fine. As I moved into the second week, I started having some of the side effects that come with this drug. While we were warned by the doctor what the side effects could be, our communication with the online chat support group was by far the best support for coping. Several of the people in the chat room were taking Sutent, so we were able to have first hand information of what to really expect. More important, the best way to deal with each side effect as it came up. We found out that everyone is different taking Sutent (and I think any of the drugs available) and that each person had different degrees of some or all of the side effects. Each time one came up, someone was there to tell us how they dealt with it. As it turns out, through my first two rounds of Sutent (four weeks on and two off) my side effects were not that severe. I had pretty much all of them at one time or another, but the worst that I had was very high blood pressure and the loss of pretty much all my taste sense. The blood pressure was (and is) scary, and we made one trip to the emergency room with it. I was able to track each day my blood pressure rising as I progressed into my treatment; then, when I hit my two off weeks, my blood pressure would drop. As to the loss of taste, well, that is just something I lived with. I love good food. While I couldn’t taste the food, in most cases, I did eat my favorite meals often, and did my best to remember what it actually tasted like. During that time, we ate many “one dish” meals, as they were easier to deal with. I had virtually no appetite, but made my mind up I was going to eat well and keep my strength up. During my first two rounds of Sutent I lost approximately ten pounds.
After the first two rounds my Oncologist ordered a CT Scan to see how the Sutent had worked. We had to wait five days due to the doctor being out of town in the interim from the CT Scan until I could get back in to see him. The wait was not easy. When we went to see the doctor, he had just returned from a seminar on kidney cancer. We were all anxious to see how Sutent worked for me. When he pulled up my scan on the computer and read the findings, he was very excited to report to us that the kidney tumor (originally 5.3 cm) had been reduced in size to 3.2 cm. In addition, the lung tumors had shown a reduction in the largest tumor from 22 ml to 10 ml. A better then fifty per-cent reduction! Frankly, we felt that a 40% reduction in the size of the kidney tumor and a better then 50% reduction in the largest lung met were fantastic results for two rounds of Sutent. More important, our doctor agreed. At the completion of the office visit, I was scheduled back to see the urologist to schedule my surgery.
In meeting with the urologist, we had a similar experience - we were able to understand what we were being told and we were given as much time as we needed to ask questions prior to proceeding with surgery. In our discussion, Dr Chon, our Urologist, also commented on the positive results the first two rounds of Sutent had shown. He cautioned us that while he could take the tumor and part of the affected kidney, he was going to recommend that we completely remove the right kidney and adrenal gland in hopes of capturing as much of the cancer and microscopic cells as possible. We had done a great deal of research online and discussed with our new KCA Facebook friends. We decided as a family that we would take Dr. Chon’s advice and let him remove the entire kidney. Surgery was scheduled within three weeks. Both doctors wanted me off Sutent during that time to allow my body to recover from the Sutent side effects before surgery.
Now, once again I want to thank all the people at KCA, the patients and caregivers that comment daily, and most of all our Facebook and KCW chat room friends, Leigh, Allen, and Pam (and all the others) as the wait was not near as bad since we were communicating with them. My surgery was set for March 10th, 2010, and I can honestly say that due to the clear and full dialog by both my Oncologist and Urologist, and the wonderful communication we got from our nightly chats, I went into this with no fear. We, of course, knew the things that can go wrong in any surgery. However, we felt so confident in our team of physicians and the care we had been given. We were very positive and confident of good results. When I woke up after surgery my wife, my son, and the doctor were there to tell me that my surgery was “textbook smooth” and that all went very well. I was pretty drugged, but clearly remember the doctor telling me how well things went and we would soon be moved to a room. Later that evening, Dr. Chon came in to discuss the surgery, and commented that this was the first kidney removal he had done where the patient had been on Sutent prior to surgery. He went on to say that the kidney showed a great deal of scarring which indicated the Sutent had certainly done its job. He could clearly see that the tumor had reduced in size as the CT Scan report showed. We had been told to expect a five hour surgery or longer, and he was happy to say that from incision to close up was only two hours!
The hospital stay was only three days. It certainly seemed longer. Medication kept the pain in check and the goal in the hospital was to “pass gas”. Once you pass gas and your remaining kidney is functioning properly. Then you can get real food and then you get to go home! Now, I must once again compliment my doctor for the manner in which I was treated. Aside from the surgery, during my three-day stay, I saw a doctor no less then four times each day. I am now home from the March 10th surgery and have seen both the surgeon and the Oncologist. And I am back on my Sutent to attempt to clean out the lung mets and any micro kidney cancer cells that may exist. We are every bit, if not more so, optimistic that we will overcome this cancer and live a long and good life. Our doctor has told me that I will be on some form of cancer medication for life, as a preventative, and I am fine with that. I know that having an outstanding team of doctors that explained everything in a way we could understand it, the help of the wonderful people that we found at the Kidney Cancer Association, and the fantastic help we were given by the people in the KCW Chat room are the reason that we have been so optimistic. I believe that you must stay well-informed and optimistic to get well. Kidney Cancer is a battle, one that we will fight as hard as possible until a complete cure is found. My wife and I sincerely hope that we can share information and give back to newly diagnosed patients the information, support, and help that we were given by some wonderful people.
Richard Wheeler
Houston, TexasRichard (Dick) is no longer with us. He won his battle against kidney cancer. He lives on in the hearts of those who knew and loved him.
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