Husband just started sutent - after advice and experiences

Hi,

I have just finished my second cycle and I'm on the two week break.  When I took the first cycle of 50mg I was only able to get to the end of the third week as I came out in very sore acne like spots all over my face and neck and I just couldn't go on.  Apparently this is rare.  My mouth was extremely sore with ulcers, I had lumps on my lips and my muscles were stiff.  (I have had my left pelvis removed due to a secondary bone met so that made it extremely difficult to walk) With the second cycle the dose was reduced to 37.5mg and I have been much more comfortable.  I still had the sore mouth and it was like eating ground up glass but no spots.  My mouth and inside of my nostrils have been very dry this time but I did manage the full 4 weeks.  If your husband has any of these side effects, reducing the dose may help although I understand that the side effects may be different for each cycle as well as the individual.  Make sure he fills in the Sutent diary as when the oncologist asks it is difficult to remember which days the side effects started on. .  

I can't think of anything else but feel free to ask anything you like and I will try to answer.  There are lots of others on this site taking Sutent who will probably be more knowledgeable than I.

Kind regards,

Maureen.

Hi,

how are you, your husband and family?

i hope the Sutent therapy is going well.

My brother has advanced kidney cancer with vena cava involvement and 2 nodes in abdominal area, he was diagnosed in April 2010, had 2x embolisation to try to stop bleeding in urine,in May 2010

He started Sutent in May and it did stabilize untill scan in November 2010 showed lymph nodes progressing! The Sutent was stopped and he was offered Temsirolimus trial, he has nothing to loose so we went for it (i say we, as he is my amazing brother, and were on this journey together)

The Sutent was started at 50mg 4 weeks on 2 weeks off, the side effects were similar to your husbands also there was exhaustion, flank pain, yellow skin, feeling cold (even in hot sun or heated room) and raised blood pressure. most improved with more drugs for bp, pain etc.

Love to you and your husband and your babies.

take care Pati

Hallo Nicnac1, I am sorry to have become your "friend" in these circumstances!  I am sorry that you find yourself in this scary place with your little ones.  Yes my hubby has been on Sutent for 2 years and we are SO grateful for the reprieve.  The side-affects were yellowing skin, whitening of hair (the mustache had to go!!!), periods of very sore mouth but not all the time, fatigue, shortness of breath.  The most significant affects for my husband is on the blood count, and neutriphils (excuse spelling).  The low count means more susceptable to skin bacteria and cold sores, so antibiotics have become a regular thing.  BUT I must say without the Sutent we would not have seen our first granddaughter born and who is now 8 months old!  I found that my life changed totally, most things revolve around my husband, making him comfy, cooking something he enjoys, keeping him warm, and spending time with him.  I don't know if it is the Sutent or what, but this has been a period for a lot of reflection.  My husband has become thoughtful, gentle and kind, he has always been a hot-head!  The Sutent was discontinued two weeks ago, and a new drug is starting tomorrow, Afinitor, so wish us all the best!