On 8/10/2008 gayleann wrote:
Looking for information re: my 76 yr old father who has angiosarcoma of the scalp, 1 year from diagnosis. He starts radiation tomorrow, after 2 tries of chemo that worked for awhile. Now his head is worse than ever-purplish, constant weeping & bleeding, raw, ulcerated, & tumerous. He has spent about 16 hours in planning & mapping, and they say he'll have 25-35 rads that could last up to an hour each. He had 2 masks & a headpiece made. Anyone out there with experience? Info? Thanks, Gayle (a recent head & neck cancer survivor, who also had a mask & 35 IMRT TX's)
I am sorry to hear about your Father, My prayers are with you both. My Husband who is 61 years old was diagnosed with Angiosarcoma of his left leg in April of this year.
When our doctor called to tell us about his Cancer, My husband who was an over the road truck driver was away, I had to tell him. It was the hardest thing I ever had to do in my life. I felt like I had cancer. Angiosarcoma is a very agressive, and recurring type of cancer. I immediately went on the internet and found as much information as I could get on Angiosarcoma. I needed to be prepared with all of the questions that my husband was asking from the road.
My Husband had 4 surgeries within a week as well as 3 skin grafts. He underwent 35 rounds of radiation and completed that in July. He had 2nd degree radiation burns and the radiation completely deteriorated his skin grafts. In late September the doctors decided that they needed to do the skin grafts again because the muscles and nerves were exposed and he was in such extreme pain.
At this time, he is recuperating. His spirits are beginning to brighten. We are terrified and will be. He was re-tested in September just before we lost our insurance coverage but the tests were inconclusive because the doctors cannot tell if there is still cancer or if the mass is due to all of the radiation treatments and the inflammation.
The doctors tell us that if the cancer is still there in his leg, they may consider removing his leg but of course that will not guarantee the spreading. If the cancer is elsewhere, they tell us that they can only make him comfortable because it would be throughout his whole body because Angiosarcoma is Cancer of the Blood Vessels. My Husband cannot be retested until the end of December.
One thing we have found out, through our process of applying for Social Security and VA, My Husband was in Vietnam, at that time he was in country, he was exposed to Agent Orange herbicide. We have a claim in with the VA for this. of course this all takes so long to determine if he is eligible for SS or VA.
I have truly devoted my every minute, all of my love into caring for my Husband. We spend every waking minute with eachother, we talk about things that we never really shared with eachother before and we are married 20 years now. Please, do the same with your Father.
This disease is very frightening, and very viscious. I believe with all my heart that there will be a cure for this type of cancer. I wish it were this very minute. Keep praying, keep loving, and spend as much time with your Father as possible.
May God Bless you and your Father.
If you ever want to talk, please feel free to e-mail me at anytime or even call.