Side effects of Sutent-Can anyone help me advise my mum

 So glad to find this website and ask for some support and advice.

My dear mum was diagnosed with advanced "clear cell" renal cancer at 67 yrs  old, after a 9 month struggle to convince GP that something was very wrong with her. The cancer has spread into small nodules in her lungs, chest and thoracic area and now suggestion of bone involvement. I am trying to find out more about a drug that has been offered. She is awaiting a bone scan +/- raditherapy as pain relief and then to start on an anti cancer treatment.

She is very pale fatigued and sometimes very nauseated with poor appetite and sleeps frequently. Mum did not want to ask her prognosis and so we work form day to day to keep her as comfortable as possible I just hope that this drug can be started ASAP but could anyone prepare me for how she will feel on this drug. We know the side effects to expect but the information sheet is so general it would be good to hear from any one who has first hand experience. We were offered a drug trail where she would receive sutent or a similar drug to see which might work better with less side effects but the follow up and interventions concerned us as she is so poorly. So our option is to move on with Sutent but I don't knw how quickly we can start. Would really aprreciate your help and will put back into the forum all I can to help others on our journey.

 

 

I am so sorry to hear about your Mum.  I hate cancer!!  Since she is already stage IV, the prognosis is not good.  Please don't "wait" to get her started on treatment, if that is what she chooses to do.  The sooner you can get started with something to fight this, the better. 

My husband, like your Mum, was stage IV when diagnosed.  His doctor started him on Torisel first, and that worked well for 8 months.  The Torisel stopped working 6 weeks ago, and now he is on Sutent.

Dave says the Sutent makes him feel very tired, and he has lots of body aches and pains.  He described it as feeling like he's "a walking bruise" or like someone had just hit him with a hammer all over his body.  He is easily fatigued, and he sleeps a lot.  His hands and feet have a tingling sensation, and his sense of touch seems a bit dull.  He says he can't "feel" things like he used to.  He has also developed very high blood pressure on Sutent and has had to start taking blood pressure medication.  Everyone has different side effects to this stuff.  But these are the ones Dave is having. 

I hope this helps you.  I will keep your Mum in my prayers.

Nancy

I too am sorry to hear about your mom. I have stage 4 Rcc and currently taking Sutent. I feel fine during my 2 week break. During my 4 week cycle I get diarhea and nausea into my 3rd and 4th week. I take immodium for the diarhea and watch what I eat for the nausea. Small meals work best. My feet are very tender and my hands itch. I wear soft insoles and that help a lot. I have aches and pains, but I am getting old and may not be side effects of the drug. All in all it is not too bad, and I continue to live a somewhat normal life. Your doctor can reduce the dose of Sutent from 50mg to 37.5mg. I have even heard of 25mg working. I started out at 25mg and increased to 37.5mg.

It is worth a try. It can give your mom a few more years of life, and new drugs are on the horizon.

Richard

I have completed 3 rounds of sutent, 50 mg., 4 weeks on & 2 weeks off.  The oncologisit did not think I would make it through the first cycle on the highest dose & I'm still there.  After 2 cycles my tumour is shrinking.  I have a secondary tumour, clear cell.  Had my kidney removed in 1997 & the secondary came last November.  It is between my lung & pulmonary artery.  So far I'm very happy with the Sutent.  First cycle I didn't really have any side effects.  Next cycle blood pressure issues so I go on a pill for 3 weeks.  Also water retention so I take a pill for a couple of weeks.  Acid reflux and I take a pill for that.  Finger tips have been a little tender.  I'm still working, doing my 8 km. walks & carrying on with life.  Some days I may be lazy but that's okay.  Stay positive!  Everyone's body reacts differently.  Best of luck with your mom.

thank you for all your kind advice. Unfortunately we had a set back today as bone scan showed more spread in my mums left hip and she has been admitted to hospital this evening for a hip replacement in next 2-3 days.I am far away from her as she lives in cambridge, UK and have been flying from Northern Ireland alternate weeks fitting in her appointments and recent diagnosis. A day ago I thought we were applying for the start of sutent treatment which I was told would take at least 2 weeks now I pray she gets over the operation, we've been told that she needs 3-4 weeks recovery before we can start sutent. Radiotherapy has been discussed, after surgery does this mean that sutent cannot be started at the same time? As all you have you have told me she needs to start sutent ASAP to have something to fight with  and  mum had just come to terms with this treatment, now she has another hurdle to jump. I don't have anything more I can say but I did want to thank you for all your replies you will be in my prayers. God bless.

I am so sorry to learn of the setback with your mother.  That is heartbreaking news.  I don't really know the answer to your question about when the Sutent can be started.  I do know that they don't want a person on it around the time of surgery.  The side effects of Sutent can be pretty bad (varies from person to person, though).  I think the body needs a little time to heal before the Sutent is started.  I'll be keeping you and your mother in my prayers.

Blessings,

Twiddles