Dad has angiosarcoma/Now taking Sutent

My dad is 78 and has had angiosarcoma of his face, scalp, and head for three years.  He has been treated with numerous forms of chemotherapy.  The only one that really helped him so far was Abraxane.  That was the first one.  The oncologist said he "plateaued," and because it was protocol, the treatment was changed.  He recently started Sutent 25 mg q.d.  After one month, he will up the dose to 50 mg.

He refused treatment back in December.  He was so sick on the combo chemo.  He lost 15 lbs, had no appetite, and was tired all the time.  The doctor did more research and wanted to try the Sutent.

Right now, the disease is on the right and left sides of his face.  It is a purplish-red color.  His cheeks are a little puffy like chipmunks.  He has patches of the disease all through his scalp.  Now he has a few nodules on his scalp.  One blood vessel burst on the side of his head and there is a large scab.  He cleans it with peroxide and warm water.

He got this disease from radiation exposure working in the nuclear division for the government.  The oncologist said we should sue.  No thanks.  Tried that when he got colon cancer.  They destroyed his records and said he never existed! 

My father is a 12 year colon cancer survivor.  He has T2 diabetes, anemia, Parkinson's disease and Parkinson's dementia.  He never complains.

Do you know of anyone taking Sutent for angiosarcoma?

This was interesting to read. My Dad has angiosarcoma of the scalp: he's 76, & was diagnosed a year ago. It's very extensive, and moving fast now. All he's had is chemo-doxcel, and taxol, I think. No radiation-at least yet. He has diabetes, myasthenia gravis and blood clots. NOT a surgical risk. I don't think anyone really knows what to do with him! We got a 2nd opinion at the Mayo Clinic, here in MN, and they had differing opinions, too-not much help. I've never heard of sutent-I'll ask his oncologist this week.I'd like to hear more! Thanks, Gayle   PS-he's done very well with chemo so far, not much for side effects.  

 

On 7/22/2008 gayleann wrote:

This was interesting to read. My Dad has angiosarcoma of the scalp: he's 76, & was diagnosed a year ago. It's very extensive, and moving fast now. All he's had is chemo-doxcel, and taxol, I think. No radiation-at least yet. He has diabetes, myasthenia gravis and blood clots. NOT a surgical risk. I don't think anyone really knows what to do with him! We got a 2nd opinion at the Mayo Clinic, here in MN, and they had differing opinions, too-not much help. I've never heard of sutent-I'll ask his oncologist this week.I'd like to hear more! Thanks, Gayle   PS-he's done very well with chemo so far, not much for side effects.  

He did well with the first course of Sutent.  He is now on a two week break.  Had bloodwork done yesterday and received his shot for the sideroblastic anemia he has had since ?.  Only side effect from the Sutent so far is being tired.  The oncology nurse thought the shade of his disease had changed a bit since first starting Sutent.  Also, the lesion above his ear is decreasing in size too.  He will see his oncologist next week and begin the 50 mg Sutent after that.  That is the max dose pill.  They started at 25 mg.

My Dad has been on the some of same chemo regimen as your Dad with a few others including Abraxane, Avastin, Doxil, Taxotere/Gemzar.  The Taxotere/Gemzar combo is what blew him right out of the water.  The Abraxane helped the most but, like his oncologist said, he had "plateaued" and they had to move on to another chemo.

Gayle, how long has your Dad had angiosarcoma?  It has been three years for my Dad, two years since starting chemo.  The dermatologist who performed the punch biopsy two years ago said max survival rate with this cancer is 2-3 years.  It's in God's hands right, not the doctors.

Please keep me updated.  Good luck to your Dad too.

Thanks for replying-I haven't heard of Abraxane-I'll have to ask. He was diagnosed exactly 1 yr ago-by a punch biopsy. We have always known the prognosis was"dismal", as our oncologist says. However, my Dad has no metastesis to other organs, per recent CT.  Does your Dad? Mine is scheduled to start ifosamide, in-patient, tomorrow. Next on the list was sutent, altho due to his bloodclots she doesn't think is really a viable option. Last attempt to be radiation-has your Dad had any experience with that at all? It's such a rare cancer and literally no information; certainly not for longterm survival, if there is such a thing. My Mom is terminal with inflammatory breast cancer; and he is also her 100% caregiver. He just wants to outlive her. I, too, am in remission for cancer-we were all diagnosed within 7 mos. of eachother last year. 2007 was a doozy!!!!!!!!! Gayle

I'm so sorry about you and your Mom having cancer too.  How old are you?  I am 49.  I have a brother almost 44 and my sister is 50.  No cancers in us knock wood, thank goodness.  My sister was diagnosed with diabetes last year. 

My Dad was offered inpatient chemo for his angiosarcoma a while back.  He said no way. 

He sees his new oncologist this week.  He has two weeks off the Sutent and then will start the max 50 mg dose after that.  His counts have been good.  The oncology nurse actually said the color of the disease is changing to a lighter hue and the lesion on the side of his head is shrinking.  My Mom said the scab looks like it wants to fall off. 

I think I mentioned my father had the punch biopsy which revealed the angio. The shave biopsy that the first derm took didn't show anything more than inflammatory cells.  He never pursued anything else.  I asked my parents to get a second opinion.  This guy was clueless.

Please keep me up-to-date on your Dad's care.  I will light some extra candles for you and your family in our church too.  We have the real candles, no electric!

Take care,
Katie

Thanks for the reply Katie. I am 55. My Dad's head has been dark & bruised looking, but during the 9 mos of chemo's it would get lighter, and recede; then darker again and grow. Now it's very angry looking: dark, spreading, ulcerated, bleeding, tumerous. Very quickly got quite out of control.

But a change in plan-now it's straight to rad. We-I go with him to everything-see the rad oncologist tomorrow right away @ 8. He had a consult 9 mos ago but decision was at that time to start with the chemo and wait & see. Now it's critical. He'll probably be mapped tomorrow, too. I had my rad at the same place/same Dr. He's wonderful, as is his RN. I had my 35 treatments there-I know everybody!! All 3 of us actually share oncologists-we joke we get the familyplan.

Cancer sucks, for sure-and I know that so very well-as I keep dealing with it in one way or another. Take care! Gayle