Side Effects - Nexavar

I have been on Nexavar for two years and the medicine has treated my cancer well.  I am experiencing shortness of breath and wondering if other patients have had the same problem w. Nexavar.  In the past, my shortness of breath was due to being enemic but currently my hemigloban has been as suffiencent levels.  Any info. will be greatly appreciated.

 Thanks.

Hello Longhorn,

I have no experience with nexavar however I was wondering since you have been on it for some time now if you could tell me your over all side effects from the beginning. As my father has been on the sutent for about as long and is now thinking its done all it can.

If he was to try this drug is it hard to get and what does it make you feel like? I have done some research and it seems to be a lot like the sutent. However I wanted to know from someone that has taken it. I do know everyone is different too.

Thank you for any info.

A Friend Wendy

 

On 7/21/2008 Longhorn wrote:

I have been on Nexavar for two years and the medicine has treated my cancer well.  I am experiencing shortness of breath and wondering if other patients have had the same problem w. Nexavar.  In the past, my shortness of breath was due to being enemic but currently my hemigloban has been as suffiencent levels.  Any info. will be greatly appreciated.

 Thanks.

I cannot answer your question but am very interested in your experience over the last two years on Nexavar. I am currently taking it for my Stage IV neurondocrine tumors of the pancreas. I have only been on it for 3 months but have had very good results so far. It is not FDA approved for my type of cancer but is having success in a Phase II study and that is why my doctor chose it. I had a scan at 2 months and my tumors had shrunk significantly! I have worked through some side effects and only have a slight hand and foot reaction and a sensitive mouth. If you could share your experience I would be very interested. Especially how it has affected your cancer and what side effects you have had and whether any affect you now. I am very happy with it so far. This is the first time since I was diagnosed in Feb. 2007 that my tumors have reduced in size.

 

 

On 7/23/2008 lilsislovesdad wrote:

Hello Longhorn,

I have no experience with nexavar however I was wondering since you have been on it for some time now if you could tell me your over all side effects from the beginning. As my father has been on the sutent for about as long and is now thinking its done all it can.

If he was to try this drug is it hard to get and what does it make you feel like? I have done some research and it seems to be a lot like the sutent. However I wanted to know from someone that has taken it. I do know everyone is different too.

Thank you for any info.

A Friend Wendy

I believe it depends upon your particular cancer and your insurance company. Right now Nexavar is only FDA approved for Liver and Renal Cancer. It is quite expensive $5800 a month but there is a program run by the manufacturers, Bayer Pharmaceuticals, that gives financial help with the co-pay or people who do not have prescription insurance. We were supposed to pay over $1500 a month for our co-pay that they offered to pay the majority of that. All we pay is $78 per month.

 As far as side effect, the list is fairly long of possible side effects. Since I applied to the Reach Program, the one sited above, I had a nurse call me before I even received the drug to go over all the side effects and to tell me what I could do from the first signs to keep them mild. The first month I had what they call hand and foot skin reaction where the bottoms of my feet and the palms of my hands were red and sensitive. I used lots of lotion and tried not to use them to any extremes. I had people open jars, doors, etc. and tried to stay off my feet when I could. This passed by after about a month and now I only have the sensitivity when I over-do it. I had a rash at first on my legs but it didn't itch and went away. My scalp itched for several weeks. I used Head & Shoulders shampoo even though I was bald from another chemo. The nurse from Nexavar said to let it sit on my scalp for about 10 minutes and it really helped. My lasting affect is a sore tongue but it was red and cracked before I started the Nexavar due to dry mouth and so I think it is linked with that also. My experience so far has been good. Hope this helps. 

 

Longhorn,

Are they monitoring your heart?  If not, make sure they start immediately.  My husband did develop extreme shortness of breath while on Nexavar.  He was diagnosed with congestive heart failure and had to stop the Nexavar.  I don't know for a fact that it was caused by the Nexavar (his onc says it wasn't, but she never seems willing to admit that her treatments can cause problems).  But I do know that they are seeing heart issues with Sutent which is similar to Nexavar.  He is now on heart medication that is controlling that issue quite well and moved on to Torisel.

 

 

On 7/24/2008 chrislol wrote:

Longhorn,

Are they monitoring your heart?  If not, make sure they start immediately.  My husband did develop extreme shortness of breath while on Nexavar.  He was diagnosed with congestive heart failure and had to stop the Nexavar.  I don't know for a fact that it was caused by the Nexavar (his onc says it wasn't, but she never seems willing to admit that her treatments can cause problems).  But I do know that they are seeing heart issues with Sutent which is similar to Nexavar.  He is now on heart medication that is controlling that issue quite well and moved on to Torisel.

 

Started on Nexivar for 8 months.  Very dibitating. Also had heart problem during treatment.  Have been on Torisel for 10 months with minimal side effects and good results.  Also have added 10 mg Ritilan to my my morning meds as perscribed by oncologist.  It has inhansed my energy .lelel