CancerCompass message board discussion started by Punkin on 1/29/2006 http://www.cancercompass.com/message-board/message/all,4319,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband was diagnosed with Angiosarcoma in October 2005. He is taking treatments now. I would love hear from anyone that might can enlighten me on this type of cancer. What I have read is very scary. I do know that it is very rare. I also need some emotional support. This has hit us like a ton of bricks. Would love to hear from someone. Punkin Sun, 29 Jan 2006 00:00:00 GMT My Best friend was diagnosed last week with Angiosarcoma. He is in the hospital now. He is 27. Did you get any information from your post? Pleasehelpme Mon, 30 Jan 2006 00:00:00 GMT Hi. Thanks for replying. No I havent gotten any replies to my message. I am sorry about your friend. I have done research on the net, but it is very scary stuff to read. I am hoping that someone can enlighten us on this type of cancer. I do know that it is very rare and it spreads very quickly. My husband's cancer has spread to 3 different places, with 3 tumors on his scalp, and one on his L2 that are still there. They took his spleen out and that was the source of the cancer. He is currently taking chemotherapy. What are they saying about your friend? Are they planning surgery? N Punkin Mon, 30 Jan 2006 00:00:00 GMT Thanks for the reply. He is to weak for surgery. He is 27 years old and its stage 4. It spread very quickly and its very scary. Not many answers from anyone including the doctors....thank you for asking. Pleasehelpme Tue, 31 Jan 2006 00:00:00 GMT Please keep me posted on him. I know this is a very diffucult time for him and his family and his close friends. I pray that God will strenghen him so if he must have surgery they can do it. My husband is weak also. Last week, they had to give him 2 units of blood. He actually feels a little better since his "tune up" so he calls it. :) He is on chemo this week and so far, he hasnt been too sick. He throws up almost every single day. But that is a small thing that we can deal with. Please tell your friend that there are people in Mississippi praying for him. Please keep me posted!!!! Punkin Wed, 01 Feb 2006 00:00:00 GMT My husband was diagnosed with angiosarcoma Jan 04. He had surgery to remove a 17cm tumor in his abdomen. It was not attached to any organs like they thought it would be. He had treatments of taxol and gemzar.The taxol was changed to Taxotere because of a rash. Then he developed a lung fungus and was in ICU for 10days. Treatment was stopped for a few months. From March 05 to August 05 he had six treatments which were done in the hospital of Doxorubicin and Ifosfamide. He developed staff infection in his port and treatment was stopped. He was on 400mg Gleevec for two months. His ct scans were done March 2 and all the small tumors are now 6.5 that were like 1.5 in December. They were going to try Evastin but now they say he doesn't qualify for that because of his previous treatments. My husband only has fatigue and restless legs. People are amazed that he is hardly ever sick and hasn't had any pain. The doctors in the Sarcoma group at MDA met last week and notified us that there is nothing more they can do. They said he would be referred to the Phase I group and they would explain just what that is. We have an appointment for March 28. It makes it hard to understand this when I see him out mowing the yard and then I don't know what we are supposed to do now. Ccmanj Sun, 12 Mar 2006 00:00:00 GMT I understand partly were you are coming from. We have not been given that prognosis, but I am like you in the sense that we do not know what to do next. I assume you are speaking of MD Anderson in Texas. We have been referred there by several people, they say that they have a special area for Angiosarcoma. My husband has so many good days, were he feels like running a marathon, then days like today, he can not get out of the bed. He is having major problems with his intestines. We were in the ER today and they told us he has a partial obstruction in his intestine. If it doesnt pass soon, he is at a high risk of developing Septic Shock and it is very serious!!! I am a basketcase tonight. I was happy to see that I had a reply to my message. I am so sorry for your troubles. My husband has been on some of the same types of Chemo. I know that Dixorubin sounds familar. WE have an appointment Tuesday to see our oncologists about the results from his ctscan he had last week. I would some information on MD Anderson if you have any avaiable to share with me. My brother in law lives in Houston and speaks highly of them. We are thinking of seeking a second opinion and we were thinking there or Vanderbilt in Nashville, TN. I will have you and your husband in my thoughts. I know the agnony that you must be going through wondering if he will ever get better. I tell myself everyday that things are going to be okay, but days like this I wonder....I would love to hear back from you. (Where is your husband's port located?) Praying in Mississippi Punkin Sun, 12 Mar 2006 00:00:00 GMT Hi Punkin, Sorry I have been so long answering your message. We did start the experimental drug on April 10. It is called XL184 and has only been tested on animals. He did OK and we had to be at the hospital for twelve days for the first session so they could monitor his blood, urine, and vitals. We stayed a few nights in a motel and drove home others. When we went back for the second session he had been having trouble because his abdomen was so extended. He could only eat a few bites at a time and was real fatigued. The doctor decided to do the scans even though it was early but sure enough he had massive growth of all the tumors so they took him off the experimental drug. Because of the pain in his abdomen and back they have put him on a pain management plan. Oxycodone. We go back in two weeks to decide to try another plan. Ccmanj Tue, 09 May 2006 00:00:00 GMT Hi. My husband had surgery for colon cancer and angiosarcoma in Feb 05. The colon cancer has not returned; however, the angiosarcoma has returned. The last 4 treatments of his 16 chemo treatments were Doxorubicin and Ifosfamide. He is detoxing once again which is scary since I know the tumors will be growing. The doctors will determine which chemical for his next chemo session. He has not received taxol and that has been discussed as one option. Is your husband with a trial; thus, the XL184? Njoythemoment Wed, 05 Jul 2006 00:00:00 GMT I am so saddened to write that my husband has passed away. He fought so hard with this terrible illness. The cancer spread so quickly and his body just could not take anymore treatments. He passed away on Father's day June 18th. He did take 1 round of taxol therapy back in May. But after that he was too weak to withstand anymore. We didnt take any experimental treatments. I wish we could have though. I would have done anything to try to help him. I would love to talk to someone about this. This is terrible illness and there has to be something out there to get rid of it!!! I wish your husbands a full recovery. I will say a special prayer for them. N Punkin Mon, 10 Jul 2006 00:00:00 GMT I am so sorry to hear about your husband. The same thing happened to mine. He passed away on July 8. I wish I had replied to your email earlier. We were told at MDA on May 16 that there were no more treatments we could try and our Dr. arranged for hospice. They came out two days later and set up things like oxyzen, hospital bed, etc but he didn't need any of that until the end of June when his kidneys and lungs started shutting down. He did take a lot of pain medicine but mostly it was because the tumor completely filled his abdomen and it was so swelled I was afraid it would burst. Also for the last month he could only eat one or two bites of food because there was no place for it to go so he lost a lot of weight. I would also like to talk to you about this and I wish MDA would have wanted to try to learn more about the disease but it is so rare they want to spend their money on cancers that are "more popular". Ccmanj Sun, 06 Aug 2006 00:00:00 GMT I am so sorry to hear about your husband too. I read your reply and thought I had typed it cause of the similarities! We were told that MD Anderson would not take my husband because he was unable to physically walk in the facility. We did go to Missouri and saw a specialist, but the cancer was so far gone they could not do much. We had the oxygen, hospital bed and hospice too. I was amazed at how bad he got there towards the end. He was so sick. I am like you, why do they not find something to get rid of this cancer! My husband was 32 years old and was not ready to die. He had so much to live for. I would love to talk to you further about this. I do not know if we can post email addresses up here, but I will and would love to talk to you somehow. Maybe we might both be able to help each other with the pain. Punkin Sun, 06 Aug 2006 00:00:00 GMT OK Here's my email address---I will be out of town today and tomorrow. --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Ccmanj Sun, 06 Aug 2006 00:00:00 GMT Well that didnt work. Let me see if this will work. Please visit my husbands website at caringbridge.org when it asks for the site name type in robertrussell, all together. Send me your email address through that so maybe we can speak that way. Thanks Punkin Fri, 11 Aug 2006 00:00:00 GMT OK I did as you suggested. My note is dated 8-12 Ccmanj Sat, 12 Aug 2006 00:00:00 GMT my hubsand angiosarcoma cancer   they found it three and half years ago and nothing else so far as show up so far but i still worry all the time about him . it  is like a dream but the dream is true . it is hard his mother died with cancer but we don't know what kind 20 yrs ago. john doe Tue, 01 Jan 2008 00:00:00 GMT I have was diagnosed with angiosarcoma in my pelvis in October 2007. it was removed and so far I have no metastasis. I can so relate to being scared. I want to be okay, but sometimes I wake up in the middle of the night, and all I can hear is this little voice going, "cancer, cancer, cancer..." Most of the time I do pretty good though. I try to stay busy and distract myself as much as I can. I am finishing radiation this week, then Disney World and on to chemo! wanderingrose Thu, 17 Jan 2008 00:00:00 GMT