Husband diagnosed w/ Cardiac Angiosarcoma-41 yrs. old-anyone else.?

momofthreekids

Hello,
We live in Toronto, Canada. My husband just diagnosed and started chemo 2 weeks ago. He has had a hard
Time and remained in hospital. Platelets went down to zero. The primary tumor is in the heart but also spread to
His should crushing 3 bones. Having a rough time and would like to meet others with similar situation.Primary
Cardiac Angiosarcoma is extremely rare. Sarcomas are 1% cancers cardiac tumors 1% of sarcoma cancers.
Caroline husband to Rory and 3 children.

QueenOfSwords

Cardiac Angiosarcoma
Hi Caroline,

I'm so sorry to hear about your husband's diagnosis. It is extremely rare, and this cancer and location is difficult to treat, which is why it's so important for him to be seen by an expert.

Dr. Vinod Ravi at MD Anderson Sarcoma Cancer Center in Houston, TX has managed many cardiac angiosarcomas. Please arrange for an in-person consultation with him or request that your husband's oncologist contact him for a consult for guidance and recommendations.

There is also an online support group for angiosarcoma, both a website and a discussion group on Facebook. They can provide support and additional suggestions.

www.cureasc.org
Facebook group: "Angiosarcoma Cancer"

Wishing you and your family the best...

Megmendez

Caroline,
I am actually a
Caroline,

I am actually a patient of Dr. Vinod Ravi at MD Anderson in Houston. I was diagnosed with Epithelioid Hemangioendothelioma January 2011 in my right paraspinal area. The tumor was pressing on 5 of my vertebrae and the other side was against my aorta (major vessel coming from the heart). Because of the location of the tumor, surgery was not an option (it was discussed, but decided it was too dangerous). I was given radiation for 6 weeks and chemotherapy for 9 months. I am currently on surveillance, so I go in every three months for scans. My tumor is stable and no longer pressing on my spine, but I still do have pain and take Methadone daily for it. I have been told that I will have the cancer forever, that there is no definitive treatment, and surgery isn't an option. I know this is not exactly what your husband is dealing with, but it is very similar. From what I have read, what I have is considered an angiocarcoma, but just not as aggressive. It is a tough situation to be in, I know. If I can be of any assistance to you or you would like to me questions, feel free. Hang in there.

Megan
29 yrs. old
Texas

Ani B

Primary cardiac angiosarcoma, left atrium, 54 years old

Hello,

 

My sister-in-law was recently diagnosed (7/2013) with primary cardiac angiosarcoma. She had open heart surgery for a suspected myxoma. The surgeon removed an 8 cm mass on 7/5/13 and said it was invasive and cancerous, and had inflitrated the atrium wall.  We were referred to the UCLA Sarcoma program, and went to see Dr. Singh. I also made an appointment for her at MD Anderson, with Dr. Vinod Ravi, as well as Dr.Michael Reardon (I cannot say enough great things about this amazing man) at Methodist/DeBakey. They work as a team in Houston on these cases. Dr. Reardon has pioneered a technique called autotransplantation in order to fully resect the heart.

She just finished her first round of chemo (ifosfimide) which was delayed by a week because there were mets in her brain (5 small lesions). They irradiated her brain, and then started chemo on a 24 hour schedule, inpatient. After her second round of chemo is done in a few weeks, we will return to Houston to see Dr. Ravi and Dr. Reardon. Dr. Reardon has suggested surgery if her tumor has shrunk (she still has a 4 cm mass in her heart) and if there are no mets anywhere else.

Outwardly, she looks fine, although the chemo tired her somewhat. she has a good appetite and walks a little every day.

I know her prognosis is not good, but we are hoping for the best. 

I hope your husband is doing well.

Ani

Fencer72

Ani B said:

Primary cardiac angiosarcoma, left atrium, 54 years old

Hello,

 

My sister-in-law was recently diagnosed (7/2013) with primary cardiac angiosarcoma. She had open heart surgery for a suspected myxoma. The surgeon removed an 8 cm mass on 7/5/13 and said it was invasive and cancerous, and had inflitrated the atrium wall.  We were referred to the UCLA Sarcoma program, and went to see Dr. Singh. I also made an appointment for her at MD Anderson, with Dr. Vinod Ravi, as well as Dr.Michael Reardon (I cannot say enough great things about this amazing man) at Methodist/DeBakey. They work as a team in Houston on these cases. Dr. Reardon has pioneered a technique called autotransplantation in order to fully resect the heart.

She just finished her first round of chemo (ifosfimide) which was delayed by a week because there were mets in her brain (5 small lesions). They irradiated her brain, and then started chemo on a 24 hour schedule, inpatient. After her second round of chemo is done in a few weeks, we will return to Houston to see Dr. Ravi and Dr. Reardon. Dr. Reardon has suggested surgery if her tumor has shrunk (she still has a 4 cm mass in her heart) and if there are no mets anywhere else.

Outwardly, she looks fine, although the chemo tired her somewhat. she has a good appetite and walks a little every day.

I know her prognosis is not good, but we are hoping for the best. 

I hope your husband is doing well.

Ani

To know more abt the mets to brain and radiation treatment

Hi Ani , 

can you share more about the radiation treatment regime , how many sessions , duration of each session with me ? Was it done in Houston by md Anderson / doc ravi or by Methodist hospital / doc reardon ? what was the cost ?

My husband has cardiac angiosarcoma and just had mets to the brain. He just had a brain surgery and docs are advising that he needs radiation. 

Tks 

Fencer 

 

 

 

Ani B

Fencer72 said:

To know more abt the mets to brain and radiation treatment

Hi Ani , 

can you share more about the radiation treatment regime , how many sessions , duration of each session with me ? Was it done in Houston by md Anderson / doc ravi or by Methodist hospital / doc reardon ? what was the cost ?

My husband has cardiac angiosarcoma and just had mets to the brain. He just had a brain surgery and docs are advising that he needs radiation. 

Tks 

Fencer 

 

 

 

Angiosarcoma

Hello Fencer,

She started with AIM. We decided to have her do the chemo regimen in Los Angeles so that she would be close to home. She did very well on AIM. During one of her AIM chemos, she experienced an issue with moving her leg. A brain MRI confirmed the presence of lesions. She underwent gamma knife surgery (targeted radiation) for the three lesions.

In October of last year, she was Dr. Reardon's 36th autotransplant surgery, and he cleared the turmo from her heart. She did amazingly well! I don't know about the cost--her insurance has been wonderful and has covered everything so far.

Later, she started Avastin and had whole brain radiation (in I think a three week session). She began and is still on Gemzar + Abraxane. She is doing very well and feeling good!

Feel free to contact me at aboyad@gmail.com if you have any other questions or need to talk!

 

Ani

Anorth88

Angiosarcoma of heart & liver

Hello everyone,

My mother was diagnosed officially Tuesday, April 11 2017 with a primary Angiosarcoma of the heart with metastasis of two spots on the liver.

This will be the 3rd time she has had cancer. She was first diagnosed in 2007 with Colon cancer, they did surgery with no chemo/radiation, while getting all the cancer. Then in 2009 she was diagnosed with Liver cancer, again they removed it all with only surgery, no chemo/radiation.

We were admitted to Glenwood Hospital in West Monroe, LA a few weekends ago with shortness of breath and chest pains. She was diagnosed several years ago with COPD so we were thinking it was just something to do with that, but since she was having chest pains my brothers decided she needed to be seen. Upon several CT, MRI, blood work, Bone scans and Pet scans they set us up to meet with a Oncologist, Cardiologist and Thorastic Surgeon. Since we were admitted on a weekend, we didn't get much answers until that following Monday.

They told us they found some masses on her liver and a mass in her heart. They did a liver biopsy that same day, but since she wasn't in any pain at the time they decided to discharge her, and have her do follow-ups.

The next week, we heard from her Oncologist who told us the news of her having the Primary Angiosarcoma of the heart which had spread to the liver. He imformed my mom of how rare this sort of cancer was and wants to refer us to some hopsitals in New Orleans, LA. I live in Texarkana, and saw on here someone saying something about a DR in Houston who might know something about this???

They currently said mom might be looking at 6 months, but she is pretty healthy right now. Besides her not being able to walk 10 FT without being out of breath due to the tumor being in her right side of the heart and compressing on the Pulmonary Artery.

We are meeting with her Thorastic Surgeon tomorrow then again Tuesday with her oncologist to hopefully get more answers and maybe get a referal.

If anyone has news on this matter, it would be greatly appreciated as how I CAN NOT find anything about it on the web besides how severe it is, etc.

Thank you so much!

Ashley

Savannah smiles

My husband has cardiac angiosarcoma too

Hello,

I hope you are well.  My mother in law passed away in May 2019 of cardiac angiosarcoma and now my husband has been diagnosed with stage 4 cardiac angiosarcoma.  He (Michael) underwent heart surgery at Stanford and began his first round of chemotherapy on Monday.  They were able to cut out all the tumor they could see in his heart but he has several small cancerous nodules in his lungs that he is still dealing with.  There isn't a lot of info out there about this particular cancer.  The only statistic I've read is that people diagnosed with stage 4 cardiac angiosarcoma have a median lifespan of four months-not inspiring...  I suppose I'm looking for something that contradicts this information-a bit more hope.  Have you found anything?