Why Put Off Sutent?
by Chris Battle, survivor on September 20, 2011I’ve started suffering the first of the side effects from the new drug regimen with Sutent. The prescription comes with a long list of potential side effects – indeed there are entire websites dedicated to them – but nowhere have I seen this particular adverse reaction: Severe Golf Swing Debilitation. On a beautiful Sunday afternoon I went out an
d played some very ugly golf. It couldn’t have been my fault and so I’m looking for a 1-800 number to call Pfizer or the FDA and tell them they need to update Sutent’s Black Box Warning: “Sutent can cause serious liver problems, including death – oh, and appalling golf.”
Other than Golfus Morbidus, however, I have not felt any side effects. I don’t think. I’ve been a little tired, but I’ve had a lot going on over the past week, including a Scooby Doo Wii marathon with my daughter. I thought I was special, but some friends of ours told us that they had not experienced any side effects on Sutent for about two weeks.
So, we’ll wait and see.
A note to our many friends in the kidney cancer community who have asked why Dena and I have been opposed to going on Sutent.
Well, first, because one of the warnings that came with the drug was that it can cause dizziness, which will be made worse if taken with alcohol. And, really, who wants to go on a drug that can’t be taken with alcohol?
That said, we’re not opposed to going on Sutent. Sutent remains the first line of defense for many people with kidney cancer. And the drug has produced wonderful results for many. In one sense, it is a relief to be starting a treatment regimen with a well-documented record of success in fighting this uncommon cancer.
So why didn’t we start off with Sutent? As Dr. George, our oncologist at Duke, put it: There are only so many tools in the toolbox to fight kidney cancer, and we should try to use them all. It’s a question of sequencing.
I opted to start with High-Dose Interleukin (IL-2) because – well, because I could. Not everybody can undergo IL-2. It is a brutal treatment with dangerous side effects that must be well managed in an intensive care unit at a hospital that has experience administering the drug. Many patients are denied the opportunity to undergo the treatment because of physical limitations – you can’t be beyond a certain age or fitness level, for example. You can’t have any heart problems. Others do try it but must stop because of the severity of the side effects. So why go through all of that? Because IL-2 is the only FDA-approved drug that can result in a durable complete response – our buddy NED (No Evidence of Disease). I didn’t want to “extend life” but to live it indefinitely. Morphine drips and a few hallucination-fueled sweaty nights seemed well worth the effort.
Sure, it didn’t work. But I’d do it again. And I’d advise anyone who can undergo the treatment to seriously consider it before immediately jumping to Sutent.
When the IL-2 failed, we decided to try lung surgery. Duke has a renowned thoracic surgeon who was able to remove all the mets from my lungs. While we knew that the mets would eventually return, our hope was that it would give us a couple of years before that happened. And when it did, then we could consider Sutent.
Unfortunately, the disease came back more rapidly than we expected. (Almost immediately.) At that time, we considered Sutent but decided to try the clinical trial with MDX-1106. Why? Because although the research was limited, the oncology realm was abuzz about the positive results associated with the drug. And the side effects were minimal.
So, okay, this failed too. Not the drug necessarily, but my treatment on it. I failed it, but that doesn’t mean others will. Clearly MDX-1106 works on some people. The question, to me, is whether it ends up working on a small percentage of patients, like IL-2, or whether it proves effective to a far greater number of people. The research is too early to tell what level of dosage will work best. I was assigned a low dosage – 1mg. Others have tried 10mg. I hope that they find the right dosage level and it proves to be an effective therapy. It offers hope of a durable response, like IL-2, but with few of the debilitating side effects. It could prove to be a wonder drug.
So now we turn to Sutent.
We have a lot hope with this drug, but we’ve put it off, hoping for success with the other treatments, because we know that Sutent’s progression-free survival rate is limited. A median of 11 months. Of course, that’s a median – and many have survived with Sutent’s help for years. And our hope is that we too will live with it, and live with cancer, for years to come. If, when, the drug does stop working there may be new treatment options available to us. I haven’t given up on the coffee enemas, for example.
Finally, we waited because we knew that Sutent would destroy my golf swing. My doctors have taken numerous steps to manage this particularly cruel side effect. They’ve sent me Jack Nicklaus videos. They purchased a subscription to Golf Digest. They’ve hooked me up to IVs to keep me hydrated while feeding me a diet of the Golf Channel — 12 hours on, 12 hours off. They brought in the uncle of one of the nurses who had been a golf pro at some Texas country club back in the 70s, but after numerous trips to the range he just threw his clubs down in disgust and stomped off, cursing me and Sutent both.
Now that I can blame my awful swing on drugs, I’m ready to move forward full force. I look forward to blaming a lot of things on Sutent. Come to think about it, I probably should have started a lot sooner. There are so many chores I’ll be able to get out of.
September 25, 2011 at 5:11 pm, Richard Catlett said:
After an 18 month run on Sutent I did the only prudent thing…I gave away my clubs. I did achieve NED, however the golf game was gone forever.
September 26, 2011 at 7:11 pm, jimmy stewart said:
i have kidney cancer they want me to start on suntent but i dont know what to do is it a drug that can help in some way
February 17, 2012 at 3:57 am, Phil said:
I am just finishing my first round of Sutent. I have been experiencing some hand-foot syndrome related soreness and told to limit my walking and pressure on my fingertips. I am planning on golfing starting this Spring but this has me worried. I also went through IL-2 and is just as rough as everyone says it is. But I would gladly do it again for a chance at durable remission. In my case, IL2 triggered a brutal case of psoriatic arthritis which I am still battling. It is lessening in severity but my hands are still swollen and holding a club would be tough. Since I live in New Hampshire I still a few month until golf season
February 20, 2012 at 2:26 am, Chris Battle, survivor said:
Couple of things I’ve found to help me, Phil. Apply New Skin (liquid bandage; can find in any pharmacy) and then band aids to the pressure point areas on your fingers. Also, wear two gloves — one on both hands. This has helped minimize the blistering on my hands when I play golf. You will find that you’re palms will be tender the next day, and maybe the next. Try to avoid hot water. A little tricky with shaving, but if possible use warm water. The hotter it is, the more it will burn.
For your feet: You’ll find that the literature describes hand-foot syndrome as causing blisters. In some ways yes — for example, my fingers blistered easily when I played golf until I starting doing the routine described above. However, I’ve found that what occurs on the soles of your feet aren’t really blisters. They’re more like hardened calluses. It’s as if you had a BB under your skin and had to walk on it every day. A podiatrist can help by shaving back the calluses. (Be sure to tell him you have hand-foot syndrome and also that you are on a drug (Sutent) that can lead to excessive bleeding. In other words: No cutting. I’ve also found that regularly using a callus remover from a pharmacy (Ped Egg or something like that) helps keep the callus at bay. Makes a big difference. Finally, I always get a cart, even if I’m only playing 9. Which, with Sutent, sometimes is a necessity. But at least you can still get out and play!
April 09, 2012 at 1:50 pm, Phil said:
Chris
thank you for all the advice. I had a much better experience on cycle 2 of Sutent. I really have not had horrible side effects compared to what others have posted.
I just got back my scan results (after 2 cycles) and had major reduction in all my tumors and no new ones. so it appears i am responding well to Sutent. Hopefully, it continues for a long time.
I am going to Florida next week for my son’s college graduation. And because of you, I am taking my clubs and going to play some golf. It is time for me to get more active and miss playing. I will just listen to my body and if I can only play 9 holes – that is 9 more than I am doing now.
Maybe we need to have a tournament with guys on Sutent or with cancer. Remind us all that we have a lot of living to do.
Thanks again!
Phil
January 30, 2013 at 2:10 am, Greg said:
I am a 1.5 yr. “complete response” IL2 survivor of state IV Fuhrman Grade IV clear cell renal cell carcinoma. Treated successfully at Moffitt Cancer Center in Tampa and have had 5 clear CT scans. All mets gone and no sign of any new ones.
Saw a new urologist today (not affiliated with Moffitt) and he strongly recommended that I start taking Stutent, although I am totally without any evidence of RCC.
Anybody have any similar experience/recommendations? I will consult with the uro oncologist at Moffitt before making a final decision. I’m particularly concerned about the side effects of Stutent. Thanks!
February 01, 2013 at 5:04 pm, Chris Battle said:
Greg, I am hesitant to offer medical advice; however, I would definitely consult a renal oncologist (not only an urologist). I don’t quite understand why you would want to undergo the side effects of Sutent if you have no evidence of disease.
March 26, 2013 at 8:21 pm, JK said:
I am a 3 year RCC stage3 cancer survivor. I was put in a triple-blind study and ended up with 11 months of treatment, which was determined to be Sutent. I had about 5 side-effects. The worst was a deteriation in my heart ejection rate and a destroyed thyroid gland. I cannot run, but I can workout as much as I want as long as my heart rate stays under 130. I am taking a levothyroxine treatment for my thyroid.
My scans have been clear…..
April 04, 2014 at 11:45 pm, Ira Kalet said:
I did Sutent for a year or so, after several IL-2 treatments with partial response. During the Sutent, I took skating lessons and it vastly improved my ice hockey performance (I play in a local adult amateur league). I was skating and playing better than ever in my life (I am nearly 70). The thing that really caused trouble was the brain met that turned up and I got zapped with the Gamma Knife. Even that wasn’t the problem, it was the steroids to get the swelling down, which weakened my muscles drastically. After finishing that, and some PT, I am back on the ice and almost back to where I was, skating backwards and playing defense again. I may restart the Sutent. While on it, I wore thin liner gloves inside my hockey gloves, which worked great. Hey, you golfers need to change to a real sport – get on the ice and move!
In case you are wondering, I have still lots of lung mets, some abdominal mets, one is 4 CM, but they don’t prevent me from breathing and playing. This disease sucks, but y’all hang in there, and as Spock says, “live long and prosper”.
November 11, 2016 at 9:05 am, David Barnett said:
I have just commenced year 2 on Sutent and my dosage has been decreased due to the side effects. I am a stage 4 ccrcc sufferer with my primary in my left kidney and a secondary tumour in my right femur. Both tumours were successfully removed including a nephrectomy and I now have a prosthesis from right elbow to shoulder. Since the surgery I have been clear of any mets , however my Oncologist who is a Professor here in Thailand , recommends I stay on Sutent to endeavour to keep the cancer at bay.
My side effects have been getting progressively worse, in particular sores on my feet and worst of all severe inflammation and swelling of the rectum, which makes toilet trips excruciating . My fear is if the side effects become that intolerable, is there another drug available that can continue the fight against this horrible disease. I am also aware Sutent will not work forever.