angiosarcoma

5 Posts | Page(s): 1 

angiosarcoma

by gayleann on Sun Aug 10, 2008 12:00 AM

Quote | Reply
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)  

RE: angiosarcoma

by Vickyt on Thu Oct 30, 2008 12:00 AM

Quote | Reply

 

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. 

RE: angiosarcoma

by juicetime on Sun Feb 15, 2009 12:00 AM

Quote | Reply
I am a 28 year old survivor of angiosarcoma. i lost my entire left chest wall, spleen, upper left lung, and paracardeum (sack around the heart) to that ugly cancer. I was given 5% chance to live and i fought everyday. I read into foods a great deal and ate only items that were high in antioxidants. i also went on a heavy dose of mangosteen juice to help clense my system. Green tea also was another thinbg in my diet. I also excersised everyday. I did everything I could to make my body in the bet fighting condition it could be in. I got lucky because I had the best thoracic surgeon in the country operating on me. it is an ugly ugly thing and this was my second time with cancer. if you have questions or anything feel free to email me at --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--

RE: angiosarcoma

by auntdally on Fri Apr 24, 2009 12:00 AM

Quote | Reply

Hello,

I am so glad i came across this site and read your post. Yous story gives me hope. Our friends daughter of 13 was just diagnosed with angiosarcoma. Its very scarry and information is scarce. If you have any advise it would be welcome. Or any info on treatment, alternative or otherwise. Also we live in Montreal Canada but we are willing to go anywhere in the world. I thank you in advance, and truly greatful for any input.

thank you,

Dally

RE: Radiation angiosarcoma

by Caribjoy on Tue May 15, 2018 11:39 PM

Quote | Reply

On Oct 30, 2008 12:00 AM Vickyt wrote:

 

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. 

I too have just been diagnosed with angiosarcoma and so far what I have read has me frightened.

20 years ago I had synovial cell sarcoma.  It was treated with surgery, chemo, and radiation.  Well now (20 years later) and I have this diagnosed.  I read that it is aggressive and there is a 15-20 months survival rate.  I am also a vaginal cancer survivor (3 years).

I am trying to keep upbeat and to have a positive outlook, but I am scared.

5 Posts | Page(s): 1 
Subscribe to this message board discussion

Latest Messages

View More

We care about your feedback. Let us know how we can improve your CancerCompass experience.