I have been on Sutent for three months now (I just started my third round). My diagnosis is different from the typical label usage of the drug for RCC, GIST, and even Neuroendocrine Pancreatic Cancer. I have a Neuroendocrine tumor originating in my Thymus, which was removed (Thymus and tumor) almost three years ago and have been through radiation treatment for my chest, chemo (Cisplatin/Etoposide), and a brief run at biologics (Avastin). Other background info: I am 41 years old, male, and the cancer has
spread to my lymph ( I've had all my left axillary lymph nodes removed)
and bone, mainly throughout my spine. So I have considerable pain from
the cancer having spread to my spine. I started Sutent once it showed promise in treating neuroendocrine tumors in the pancreas, since there really isn't much else out there for my to us given the rarity of my tumor type and location.
Regarding side effects from Sutent however, I haven't really had many. I have had a slight yellowing of skin that is exposed to sunlight (from when I take the kids to the beach and don't cover up properly) and my beard has turned gray. I've lost my appetite and generally don't feel like eating, but I manage to keep up with my nutrition and maintain my weight. The first round of treatment I had mouth sores, but they only lasted for 10 days and then went away. I used ice chips and some OTC remedies and this seemed to manage the sores really well. Overall, by the fourth week of treatment, I can't tolerate any spicy foods and brushing my teeth/tongue is uncomfortable, but bearable.
The biggest side effect for me is the fatigue. I am used to riding 100 mile bike rides and staying very active. Right now, I have decent energy for a couple of days, so I can take the kids to their soccer tournaments, etc., but then I crash for a couple days where I need almost 16 hours of sleep to catch-up. I had mono when I was in college and it feels like having a constant case of mono to me.
I did however make one HUGE mistake. While at the beach with my kids, I made the mistake of walking on hot sand/pavement only for a few seconds. This resulted in the dreaded hand/foot disease. You need to be exceedingly careful with your hands/feet while on this drug because any excess heat/friction will release the drug through the small capillaries in your hands/feet and create burn problems. These didn't heal until after I went off the drug for my 14 days off, but did heal quickly. I was lucky, but this can be a source of blisters and potentially infection, so you really need to be careful with your hands/feet. Doing things as easy as turning a screw driver a bit too hard, may result in hand burn problem, so be very careful and take care of your hands/feet. I was caught off guard by this, but never again.
Overall, however, I am very pleased as the side effects have so far been minimal (a sore stomach here and there, but nothing major "knock on wood". I am waiting for results of my scans from yesterday and am hoping that my tumors are staying in check so I can continue on the drug because my body seems to tolerate it fairly well. Compared to the Cisplatin/Etoposide that I was on over a year and a half ago, the Sutent is a piece of cake to handle as far as side effects are concerned.
Also, in the interest of full disclosure, I take a significant amount of pain killers for my back which may help mask some of the side effects. However, I have no idea of knowing how much these help to minimize the impact of the side effects, if at all.