Sutent Side Effects

Hello.  :)  I'm new to the whole idea of asking questions online, but y'all really seem like a supportive community, so here goes:

My mom is new to taking Sutent.  It is her first round.  Every day the side effects have varied.  The first week was a honeymoon, I think, and we were really excited that it was so easy.  Then, side effects started popping up.  She is having trouble sleeping at night and then getting very sleepy during the day, had a bit of nausea for a few days, and is a little wobbly when we walk.

I know it is a potent medication, and that hopefully the higher dose will really attack the lymph nodes that are cancerous.  I have been reading everyone else's stories, and let me tell you, some of you people are SO uplifting!  Thank you for that! 

My concern is that throughout reading everybody's posts, I haven't noticed anyone else reporting to be having a difficult time responding to questions, changes in short term memory, or for a lack of a better term, "seeing things" (as in having an image pop into her vision).  The fatigue has really set it, but it is more the mental side effects that have me worried.

It could be the sutent, painkiller, blood thinner, etc.  I just hoping I would find somebody elso who had the same experience and has gotten through it, because I'm worried, and my mom is the world to me.  I do have faith that healing will come our way!  Meanwhile, I want my mom to be comfortable in her own skin.  ;) 

Hi,

I'm sorry to read about your mom's troubles.  It is so difficult seeing the people we love have to struggle with this cancer and all its effects.  I wish your mom and the rest of your family all the best and will keep you in my prayers.

My husband has been on Sutent for 3 months.  His worst side effect has been high blood pressure caused by the Sutent.  He now has to take blood pressure medication while he's on Sutent.  When he has his 2-week "break" he usually doesn't have to take the blood pressure medicine.  He is also very easily fatigued and tired all the time, and his sense of taste is "off" quite a bit.  Things that used to be his favorite foods just don't taste good to him sometimes.  That recovers during his 2 weeks off Sutent, though.

I've been reluctant to say this because I really, really, REALLY don't want to scare anyone, but when my husband began experiencing the symptoms similar to your Mom's...it turned out that he had a brain metastasis of the kidney cancer.  He had become quite forgetful and had some trouble finding the right words when he would talk.  His hands were shaky, and he was a bit wobbly when he walked.  Fortunately he had a brain scan which showed a tiny new little tumor in the brain, and he underwent a procedure similar to Gamma Knife which zapped it.  That was about 5 months ago, and subsequent brain scans have shown that the procedure worked.  The little brain met is now totally inactive and not growing.  So...if this is something that happens with your Mom, don't freak out right away because there are treatments available for brain metastases. 

I think all the medicines for kidney cancer are just so powerful and they all have so many horrible side effects.  It is most likely the medications causing your mother's symptoms, but I felt I should mention the other possibility because it happened to my husband.  Also, if your mother has any heart condition and takes Digoxin or Lanoxin, the visual disturbances can be a sign of toxicity of those medications, so you might have to let your doctor know and he may need to adjust dosages of the medicines.

My hubby had a lot of trouble sleeping!  Part of the problem is that he's so fatigued during the day that he would doze off in his recliner and sleep quite a bit, then at night he couldn't sleep.  He got his days and nights mixed up.  He needs a lot more sleep now than he used to.  He usually sleeps at least 12 hours a night.  If he gets plenty of sleep (he also takes a sleeping pill to help him get to sleep) at night, then he's usually okay during the daytime.

I hope I have been some help to you.  I hope your Mom will do well and the Sutent works for her.  It's good stuff!! 

Blessings,

Nancy

I am also sorry to hear about your Mom. I am just finshed my 5th cycle of sutent at 50mg. At last CT I was responding well. However, I did stop a bit earlier this cycle. I experienced all the usual side effects : blisters,rashes, nausea, taste buds going away -- my hair (beard) has turned snow white but it is the fatigue, weakness and confusion that stopped me.  I am in the break period but still suffering from residual fatique and weakness. I am sleeping a lot and not able to function semi normally. It feels like I am in a big barrel and there is a roaring in my head. I would talk to your oncologist about your Mom's symptoms -- she may get a good reaction from Sutent on a lower dose.  Sutent is a powerful drug and probably the best currently for RCC. I am also trying to get my nutrition on track ( I am not the best at this cuz you have no appetite on Sutent) It takes a real balance. The sutent keeps us alive and the RCC at bay with a price. The rashes etc can be mitigated -- so far I have't found anything for the fatigue

I hope this helps

steve