My husband has Stage IV RCC. He originally had a nephrectomy in 2005, no other cancer was found and he was cancer free until last year. Back in October, he started having back pain. Since we make our living as organic farmers, having a sore or aching back is nothing out of the ordinary.
Our family doctor treated him for a herniated disc for a while, he had acupuncture for the pain. It seemed better for a while but by January, he could hardly get off the sofa without my assistance. Finally our GP ordered an MRI, which of course, showed something abnormal in the L2 vertebra, so CT scans were ordered and there was a very large tumor, pushing out the disc.
He had spent hours laying on the heating pad trying to relieve the pain. Heat increases blood flow and so probably helped to feed and grow the spinal tumor faster than it would have otherwise. The vertebra itself was partially disentegrated, which created a compression fracture. It was right at the cadua quinine and bone fragments were threatening to cause some serious permanent damage, so it immediately became an emergency surgical event. 8 pins, 6 screws, a titanium rod and bone cement were required to repair the damage. 10 courses of radiation followed the surgery, to stabilize the tumor, which the neurosurgeon was unable to remove due to its location. Stomach issues from the radiation started in Feb. and continue, although they have abated considerably.
The spinal tumor was not the only one that they found during all the drama of the spinal issues. Tumors in both lungs, the liver and several lymph glands were found. One of the lymph nodes had a huge tumor and was on the side of my husband's handsome face and we were literally watching it grow larger by the day. It has since been removed and there is a scar but nothing disfiguring (he really looks like a pirate now) although not all of this one could be removed. There was also a huge brain tumor located, but miraculously it is benign. We are watching that one with an MRI every 12-14 weeks. It continues to remain unchanged after 4 months, while the RCC tumors were getting noticeably larger every 6-8 weeks.
During his stay in the hospital, my hubby was fortunate enough to be visited by an oncologist working at the Blumenthal Cancer Center, in Charlotte NC. We were referred by this Dr. to one of the most knowledgeable oncologist/immunologists around and are now under his care. I have never experienced such caring and devoted physicians and nurses. This has taken a tremendous burden off our already weighted shoulders.
Several options for treatment were discussed but because of the healing issues from the back surgery and the reactions to the radiation, it took a while to get something started. IL2 has been discussed but it has been determined that we will try Sutent first and we are getting ready to start the third course of it. We get scans next week to see if it is working and eagerly look forward to good results.
Because we are organic farmers and live a very simply and healthy life style, my husband is extremely fit and is not used to feeling bad for long periods of time. He is also an athelete and extremely active physically, in addition to doing physical,outside labor. Since he didn't feel bad other than the back pain, until he started seeing doctors regularly, it has been hard to deal with that part of all this. His vitals have always been textbook perfect and he even had one of his doctors say that he was the healthiest patient he had ever examined, except for the cancer....
Since we have acres of organically grown fruits and veggies right outside our back door, we eat a mostly vegetarian, largely raw food diet. We also have our own chickens, so fresh eggs and some meat produced organically are always available, too, but we consume those sparingly. We have a deep well, with a high mineral content that furnishes our drinking water. We use toothpaste without chemicals and soaps I make myself, so that I know exactly what is going into it. We truly believe that this overall healthy lifestyle has contributed to the good results we are having with the Sutent. It certainly hasn't hurt.
ABOUT THE SUTENT
On the subject of Sutent, we had serious trepidations about even taking it because of the horrendous side effects that could potentially manifest with it. We live our lives in a way that is about the quality of life and so we had to weigh heavily the good versus the bad before embarking on this treatment. So far, knock on wood, we have had so very little to deal with in that area. His hair is changing color slowly to a very pale blond, mostly his beard and eyebrows, which is taking some getting used to. He has blondish hair anyway, so the change is not as startling as it could be but it is still something to see! I personally think it is kind of sexy!
He has had some fatigue but that mostly comes the last 3-4 days of the 28 on Sutent and once he is off it for a couple of days, the energy levels come back up. Last time around we had some stomach issues because he has never fully recovered from the damage that the radiation did to his digestive track and we spent a day in the emergency room because of the possibility of dehydration. Our oncologist suggest he try Nexium and that seems to be working okay. He drinks a couple of shots of carrot juice and some water before meals and that has helped alot. Eating small meals often helps too, I think. We have never eaten meals on a schedule, so eating when you are hungry around here is a pretty easy thing to do.
Otherwise, he has experienced no other side effects. His heart continues to beat strong, his blood pressure is perfect. Weight loss has not been an issue; in fact he gained 10 lbs while recuperating from the back surgery and has since shed those (wish I could shed my extra baggage that easily). While he is not able to perform all the farm chores that he did a year ago, he gets a little stronger in that direction every day. We have a friend who had basically the same back surgery in 2008 and he (the friend) is still struggling with recovery and didn't have the added issue of the tumor. We feel like our recovery is way ahead of the curve. He still takes an occaisonal pain pill for the back, but those are few and far between now.
As I mentioned, we operate a small organic farm and have spent the last 10 years working to get things to a point where we could actually make a living at it and now the Farmer is out of comission. We don't make much money but our overhead is low and we manage on what we make. Another issue we have had to deal with is paying for medical treatment. When the cancer diagnosis came in this year, we had no insurance coverage. We didn't do anything wrong, didn't let our coverage lapse, etc. We were forced into a situation were there was no other choice to be made. After the original incidence of RCC, our insurance premiums had jumped to over $1200 per month, which we simply could not afford. After we later decided that an uninsured cancer survivor was just not a good thing, we applied for insurance and it was denied...not just the pre-existing condition. I could get coverage on me but none for him.
He now has coverage under Medicaid, but didn't get it without a 4 month fight. Even though he has been declared disabled by the state, we are unable to get any other assistance and only got the Medicaid because our medical bills are so many times over our yearly income/assets. And it isn't retroactive to the surgeries, etc. Just from the first of June 2009 forward. They will review it periodically to see if we still qualify. Our state opened a new insurance pool for high risk and uninsurable people with pre-existing conditions in January of this year and he was approved for coverage in April of 2009 with a 6 month waiting period for coverage of the pre-existing. Problem is that you can't have Medicaid and this coverage, so we had to drop the insurance after waiting months to get it. And people think we don't need health care reform in America....
Bottom line, though, is that we got the coverage and we are extremely thankful for it. It took some pressure off, for sure. While not a single person we have dealt with has refused treatment or even made insurance or payment an issue, I kind of always wonder if that is going to happen sometime. Our experience has been that treatment has been the same, as an uninsured patient, as it would be for anyone else. Pfizer (the maker of Sutent) has a wonderful program called First Resource and if you qualify for that, you can get Sutent at a greatly reduced cost or even for free. There are options out there is you are dilligent and willing to be tenacious about finding them. Just because one person tells you no, don't necessarily take that as the only answer.
I have high hopes for Sutent to work for us. If it doesn't, we will look at other options, but for us, the quality of our life is primary and that will be the deciding factor. Right now he is sitting in the music room writing a new song and playing it on his guitar. While we have no intention of letting this insidious disease take over our lives, it is impossible not to have it affect every aspect of everything we do now. But we have chosen to force it to lurk around the edges of our lives instead of taking center stage and thus, it remains a fringe dweller.
Of course, things can change in the blink of an eye. Life is like that. But understanding that death is part of life can make a tremendous difference in the way you approach having cancer, etc. It is the time between when we are born and when we pass that counts, so we have tried hard and will continue, to make the absolute most of it.