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Angiosarcoma Survivor Seeking info

miracleshappen's picture
miracleshappen
Posts: 2
Joined: Jul 2003

I am a 3 year survivor of angiosarcoma. I am experiencing severe fatigue, dizziness, shortness of breath and other symptoms. Does anyone out there have any information on this?

leeny7
Posts: 2
Joined: Mar 2004

Hello, My husband was just diagnosed with angiosarcoma. We just completed our first round of M.A.I.D. Chemotherapy. He is very nauseated and extremely tired. I would like to talk to you if possible. Please reply. I am the caregiver and I feel very frustrated. He will not eat and I need to talk to someone. Please reply. leeny7

joanirw's picture
joanirw
Posts: 2
Joined: May 2004

leeny7
I am an angiosarcoma survivor myself. Went through MAI myself - ending in January. If you still need to talk - please reply.

miracleshappen
Are these symptoms from treatment?

Devon
Posts: 1
Joined: Jun 2004

I am an Angiosarcoma survivor of two years. What is MAI treatment? I went through chemo with Taxol. I was just wondering if any of you have any idea how you may have gotten Angiosarcoma. If you had been exposed to anything, or if it's just a big mystery? I was diagnosed at 26 and just have so many questions about it, and am having a hard time dealing with my survivorship... Please reply. Thankyou.

leeny7
Posts: 2
Joined: Mar 2004

Hello, my husband has completed five rounds of M.A.I.D. chemotherpay. We had a stable CT scan back in June, but have repeated the CT in August. The nodules in his lungs have increased in size and number. We are facing the decision of continuing chemo or no more chemo. This is a tough decision. If he does not continue chemo, he will probably have about six months to live. If he continues chemo, it will more than likely kill him. I would really like a third choice, but I guess there isn't one. We are contemplating HOSPICE. If you can share any information at all, at this point, it would be helpful. Please reply. We are still waiting for our miracle.
leeny7

joanirw's picture
joanirw
Posts: 2
Joined: May 2004

Leeny7 -
Is M.A.I.D. the only chemo that has been offered? That was the first chemo I received, and it didn't work for me either. I subsquently was given Taxol, and now am on Gemzar & Taxotere. There are also several new drugs in trial. MAI was the hardest thing for me. These other chemos are not as toxic against the rest of your body, but may be more affective. They are also out patient treatments. If you go to www.curetoday.com - click on the magazine cover picture - and click on singling out sarcoma - it will tell you all about the latest drugs. Just make sure your doctor is covering all the basis. If not, and you want alternate treatment, find someone who will offer it. Whatever your decision - God Bless you both.

firestuss
Posts: 7
Joined: Mar 2005

If possible it be great if you can tell me more about your treatment and how many you had. i'm 33 and live in england. i have the same illness (angiosarcoma on the liver) i have 13cm tumor on right lobe and a few on the left 3cm. i'm responding to treatment i'm on Doxrubicin hydrochloride which is chemotherapy. i'm just worried that it might stop being effective. hope to hear from you.much thx stewart

AuthorUnknown
Posts: 1564
Joined: May 2006

Hello,

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I wish you well on your treatment,

Dana
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t123
Posts: 25
Joined: Feb 2013

I was diagnosed last February and completed 6 rounds if chemo The chemo did not shrink the cancer so now I'll have surgery next week. I was on taxoil. Is there anyone else who had taxoil and as their chemo drug? What other chemo medications have others been using? I a stage 3 patient and would love to hear from anyone out there. I have angiosaroma of the breast. (This is not breast cancer)

laurenstacy
Posts: 4
Joined: Apr 2010

hello..
i am an almost one yr survivor of primary angiosarcoma. i know its hard to find people in the AS family. on facebook i have a group called AngioSarcoma Cancer as well as a website that is very new at... www.angiosarcomacancer.com

Please come and join us to help build us up and help each other.

Lauren

Wishing you all the best of health always.

ryewyck
Posts: 2
Joined: Jul 2010

My oldest brother, a cancer survivor for 30 yrs, was recently diagnosed with angiosarcoma. I am not totally sure where the cancer is located, but I believe he does have a tumor on either the liver or kidney. He is currently being treated at the U. of Chicago and taking chemo. I believe he has had 3 treatments thus far. I and others in the family have been researching the web for any info we can find, and I came across this site. Maybe just helping me to find the courage to deal with this is all this site can provide, but I do believe it is important to speak with others who have battled this terrible illness. I feel so totally at a loss to help him, but maybe just remaining strong and positive is the best help I and my other brother can provide.

SparkyDMFD
Posts: 1
Joined: Dec 2009

Hi! I don't frequent the message boards often and I realize it's been awhile since you posted. I would really like to knoow how your brother doing and what treatment options he's trying. Also, if you ever found out what his actual diagnosis was? My husband was diagnosed with Kidney Angiosarcoma when his Kidney was removed 2/23/09. In the weeks to follow we discovered it was Angiosarcoma as opposed to traditional kidney cancer. His tumor was 17 cm which I've since learned is BIG. It had also metastacized to his lungs and liver. His prognosis was "less than 6 months." He tried some chemotherapy. A rotation of Gemzar one week, the next week Gemzar & Taxotere together. Week 3 was a break...then back to the same schedule repeating. He did this for about 8 weeks. He has FLOURISHED since treatment! We've been having a blast, traveling all we can and just LIVING on the fast track. We are so thrilled for the time we've had together.....God has richly blessed our lives. I would really be interested to hear more about your brother. Thanks! Pam

ryewyck
Posts: 2
Joined: Jul 2010

Pam,

My brother Nick passed away peacefully last Thursday, Oct. 14. I do know that he was being given chemo treatment every Tuesday, possibly similar to what your husband was being treated with, but exactly the name, I do not know. However, last Tuesday when he went into U. of Chicago for his chemo he was denied because he was dehydrated. Early Wed. morning he began convulsing and was taken to hospital where he passed away. We were told that he had total renal failure, liver had shut down, and the cancer attacking every other soft tissue organ. What shocked everyone who knew Nick was that he was a 30 year cancer survivor (cancer of bladder) and he looked the picture of perfect health.

When he was diagnosed over Memorial Day holiday with angiosarcoma and told to get his house in order, never did we suspect that to be totally true. Like you, God enriched our lives with my brother. Truly a one-of-a-kind spirit who loved life and his fellow man. We learned so much about him during the eulogies that it surprised everyone in the family. As an attorney he was respected nationally, but as a private man we learned that he had paid for the college education of several people we knew but never suspected he was the donor; he saved an individual's life from drowning and never spoke about it; he supported many religious faiths with pro-bono legal services and yet did not participate in those denominations; he supported the poor with financial assistance and gave guidance like a caring father gives to a child. He will be missed tremendously.

I pray that God gives your husband and you several more years of love and the enjoyment of each other. Yes, I agree live your health to the fullest; enjoy each and every moment.
God bless,
Tony

t123
Posts: 25
Joined: Feb 2013

What website do you have for angiosarcoma patients? Is there a support group? I was diagnosed in February 2013 with primary angiosarcoma of the breast (not breast cancer). Anyone with AS knows how hard it is to find others dealing with this cancer. If there is anyone out there, let me know please. I just finished 6 rounds of chemo. Cathy in FL

Sue74
Posts: 1
Joined: Jan 2014

hi cathy,

i hope you're doing well

i was diagnosed in july 2013, primary breast AS, low grade, 9 cms. I had a mastectomy and radiotherapy. My radiooncologist said that no relapses (neither local nor distant) are expected.

as for chemo, my oncologists are not sure what to do. i've asked for a 2nd opinion in MD anderson Madrid (i'm from Spain BTW so sorry for my english) and they have the same doubts

So and i am confused, am i healed? Am i going to die within a couple of years? I wish i had a regular cancer instead ...

i'd like to hear from you. Was your tumor low grade? What chemo have you had?

kind regards

susana

 

 

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