soft tissue sarcoma looking for someone to talk to

pokerguy
pokerguy Member Posts: 1
edited March 2014 in Sarcoma #1
my cancer has spread to my lungs and i have been battling this for over two years . I have lost my left arm , had multiple surgery and alot of different types of chemo im looking for someone to talk to who has went through or is going through something similar thank for reading this Chris
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Comments

  • 571er
    571er Member Posts: 5
    HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.
  • Wreyn
    Wreyn Member Posts: 1
    Dear Chris: This is my first involvement in a chat group, so apologies for not knowing protocol. Following extenxive radiation, my wife's tumor was removed and her arm totally reconstructed in Dec. 1999 by a wizard at Sloan Kettering in NY. Chemo followed (MAIDS) with all that entails. Clean until August 2002 when lung nodules appeared...surgery to both lobes followed. More lobes discovered in January and we are now waiting for a second round of Cat Scans next month. Probable outcome is clinical trials at Sloan using PS 341 and then wait to see if further surgery is necessary. Have followed something called Et347 but can't real;ly figure out what J & J is doing with that trial. Difficult times but she is feeling and looking great, with each day being pretty special.
  • amelina
    amelina Member Posts: 3
    571er said:

    HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.

    so happy to hear that there is real hope for Gleevec! I too am on a clinical trial at UofM for Gleevec for a sarcoma in my neck. 4 more weeks until my next MRI..hopefully mine will be shrinking too. Gleevec may be a gift from God!
  • flaca
    flaca Member Posts: 1
    hi,
    my brother is facing the same thing, last week he had part of his lung removed. his cancer is agressive, he is only 33yrs old. how can i help him??
  • Tallmo
    Tallmo Member Posts: 2
    571er said:

    HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.

    Not sure what I'm doing here so please have patience. I'm curious about this Gleevic. My husband was told today to get his affairs in order as there is nothing more that can be done about his spindel cell synovial sarcoma. He's been fighting it for 2-1/2 yrs. It started in his lungs and has metastized to his face. His whole right cheek is involved and it's moving into his sinus cavity. Because of it being in the sinuses the doctors refuse to do surgery for fear that it will release blood clots that will cut off the brain's blood supply. I'm now looking at clinical trials. My email is tallmofam@bright.net. I'd be grateful for any advice you can give.
  • kflindquist
    kflindquist Member Posts: 5
    flaca said:

    hi,
    my brother is facing the same thing, last week he had part of his lung removed. his cancer is agressive, he is only 33yrs old. how can i help him??

    How is your brother doing now? The best way you can help him is to be there for him, either in person or on the phone. Many friends fail to call the patient, because they don't know what to say. Many spouses leave too. The best gift you can give your brother is your love.
  • Gini
    Gini Member Posts: 3
    571er said:

    HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.

    I have just found you when I looked for persons who have been on or are on studies for Gleevec. I have just signed on to be a participant, uterine cancer metatastized to lungs. Hysterecomy in Jan 2002, abdominal radiation, met to lungs and thorocotamy in Jan 2003, chem in Apr - July 2003...no change, now palliative care 3-6 months, they say, so the Gleevec study is last chance...any problems with Gleevec, how are things going???? would love to hear...grandma-g@tds.net..
  • myleio
    myleio Member Posts: 2
    571er said:

    HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.

    Hi I am about to have my third laparotomy in 2 years. I have not been offered any alternative therapy only surgery. I live in New zealand and we seem to be far behind you in what's available for treatment. Could you tell me what type of surgery you had.
  • cheylaineb
    cheylaineb Member Posts: 4
    Keepin praying, keep faith miricals do happen
    I am a 14 year cancer survivor and I had soft tissue sarcoma in my left arm. I it start out as the size of a pea when I was 17 year and was misdiagnosed as fatty tissue it didn't start growning until I was 19 year old it got to the sized of a golf ball my sister encourage me to go to a specialist and he was not clear on what it was. I got a biopsy done and it came back cancerous. The surgeon did surgery. I assuming he never perform surgery on this type of cancer and he removed it wrong. I found 2 month later there were piece still left in my are. I then went to Cleveland Clinic they took Awesome care of me.
    I had a 25% chance. I was told my sarcoma was in stage 5 the last stage. I had get surgery again and the rest of the sarcoma removed. I choose not to get amputation of my arm and chemotherapy. I figure if it was in its last stages it had already spread. I did radiation treatment and I have been in remission for 14 years. Keep hope, keep praying, and keep your spirit up. During my fight I kept my spirit up and kept living. I went to my treatment like I was going to see my future and my faith played a huge role
  • BigPapaBear73
    BigPapaBear73 Member Posts: 10

    Keepin praying, keep faith miricals do happen
    I am a 14 year cancer survivor and I had soft tissue sarcoma in my left arm. I it start out as the size of a pea when I was 17 year and was misdiagnosed as fatty tissue it didn't start growning until I was 19 year old it got to the sized of a golf ball my sister encourage me to go to a specialist and he was not clear on what it was. I got a biopsy done and it came back cancerous. The surgeon did surgery. I assuming he never perform surgery on this type of cancer and he removed it wrong. I found 2 month later there were piece still left in my are. I then went to Cleveland Clinic they took Awesome care of me.
    I had a 25% chance. I was told my sarcoma was in stage 5 the last stage. I had get surgery again and the rest of the sarcoma removed. I choose not to get amputation of my arm and chemotherapy. I figure if it was in its last stages it had already spread. I did radiation treatment and I have been in remission for 14 years. Keep hope, keep praying, and keep your spirit up. During my fight I kept my spirit up and kept living. I went to my treatment like I was going to see my future and my faith played a huge role

    Keepin praying, keep faith miricals do happen
    Thank you, i really needed to read this, i have very recently just had surgery for liposarcoma in my neck. The surgery was a success and all was removed. Once i am healed i will be going through radiotherapy for 6 weeks. I was happy when my Oncologist gave me the pathology report, but i can't say that i am not worried about the sarcoma coming back. But reading your post gives me more hope. Thank you.
  • cszj
    cszj Member Posts: 1

    Keepin praying, keep faith miricals do happen
    Thank you, i really needed to read this, i have very recently just had surgery for liposarcoma in my neck. The surgery was a success and all was removed. Once i am healed i will be going through radiotherapy for 6 weeks. I was happy when my Oncologist gave me the pathology report, but i can't say that i am not worried about the sarcoma coming back. But reading your post gives me more hope. Thank you.

    Liposarcoma in the abdomin
    So happy to hear you have had success! My husband was "misdiagnosed" with renal cell cancer 18 months ago. The mass was found and it was engulfing his kidney. We were told to see a urologist immediately and that the kidney had to come out.
    2 weeks later, it did, but then pathology didn't know what type of cancer it was. After 2 weeks of testing and sending it to Brigham Young in Boston, it was determined to be a liposarcoma. Our oncologist in Jersey strongly recommnended we go to Sloan Kettering in NY as they had specialists there who see this cancer much more often than anyone else.
    There is residual cancer tissue remaining from his initial surgery, and the doctor at Sloan has been monitoring it for the past 18 months. Last September, they had to go into his lung to take out a small spot which they believe was a metastisis. The residual cancer tissue has not moved or grown since his initial surgery, however, dr. says it must come out sooner or later. They consider it to be non-aggressive which is good, but it can turn at any time. Chemo does nothing for this type of cancer and surgery is the only solution. Chances are very high that once removed, it will recurr again, and then surgery will be needed again. It has been a difficult road so far, and we have a limited support system. We have two children, 15 and 11. This has turned our lives upside down. If you or anyone has some information about this type of cancer, I would appreciate hearing more. My prayers are with you as we all battle this horrible disease.
  • bigdawg32
    bigdawg32 Member Posts: 3
    cszj said:

    Liposarcoma in the abdomin
    So happy to hear you have had success! My husband was "misdiagnosed" with renal cell cancer 18 months ago. The mass was found and it was engulfing his kidney. We were told to see a urologist immediately and that the kidney had to come out.
    2 weeks later, it did, but then pathology didn't know what type of cancer it was. After 2 weeks of testing and sending it to Brigham Young in Boston, it was determined to be a liposarcoma. Our oncologist in Jersey strongly recommnended we go to Sloan Kettering in NY as they had specialists there who see this cancer much more often than anyone else.
    There is residual cancer tissue remaining from his initial surgery, and the doctor at Sloan has been monitoring it for the past 18 months. Last September, they had to go into his lung to take out a small spot which they believe was a metastisis. The residual cancer tissue has not moved or grown since his initial surgery, however, dr. says it must come out sooner or later. They consider it to be non-aggressive which is good, but it can turn at any time. Chemo does nothing for this type of cancer and surgery is the only solution. Chances are very high that once removed, it will recurr again, and then surgery will be needed again. It has been a difficult road so far, and we have a limited support system. We have two children, 15 and 11. This has turned our lives upside down. If you or anyone has some information about this type of cancer, I would appreciate hearing more. My prayers are with you as we all battle this horrible disease.

    stay strong my friends!!
    I just want to say to everyone to stay strong and have faith in God, and faith in yourself. Every one of us is battling this disease and all of our stories are different,but in a way they're all the same too. The roller coaster of emotions has hit every single one of us. But the best thing we can do is keep a positive outlook and take things one day at a time. Be patient with your friends and family. They're dealing with cancer just the same as we are. In fact, sometimes I think it's harder for them. Stay strong!! I'll keep each and everyone of you in my thoughts and prayers...
  • mernp50
    mernp50 Member Posts: 2

    Keepin praying, keep faith miricals do happen
    Thank you, i really needed to read this, i have very recently just had surgery for liposarcoma in my neck. The surgery was a success and all was removed. Once i am healed i will be going through radiotherapy for 6 weeks. I was happy when my Oncologist gave me the pathology report, but i can't say that i am not worried about the sarcoma coming back. But reading your post gives me more hope. Thank you.

    faith and miracles
    I was diagnosed in May with liposarcoma of the right thigh. I had surgery to remove the tumor that weighed 4 lbs and am in radiation now. I understand the faith and I know about the worry. I have lots of friends praying for me and I am sure you do too. This is a strange disease and it sends me on a rollercoaster every day...(did I mention I HATE rollercoasters)...I will be praying for you as you journey through this too.
  • Pastor M.
    Pastor M. Member Posts: 3
    flaca said:

    hi,
    my brother is facing the same thing, last week he had part of his lung removed. his cancer is agressive, he is only 33yrs old. how can i help him??

    Son has soft tissue sarcoma
    Hello
    Just drop by to let you know that my son is 33 was told April 2009
    That he had it. It broke my family down. But we pull together to
    Be the best support that a person could have. We founded a
    Lot of products on the web, but be careful of giving false.
    My son decided to try a treatment by Dr.Budwig look it
    Up and review it. It is information only. If you need more
    Information just reply to this message.
  • shebby
    shebby Member Posts: 1
    Pastor M. said:

    Son has soft tissue sarcoma
    Hello
    Just drop by to let you know that my son is 33 was told April 2009
    That he had it. It broke my family down. But we pull together to
    Be the best support that a person could have. We founded a
    Lot of products on the web, but be careful of giving false.
    My son decided to try a treatment by Dr.Budwig look it
    Up and review it. It is information only. If you need more
    Information just reply to this message.

    question on budwig for sarcoma
    Hi

    Did you find the budwig protocol helpful? my dad was diagnosed with soft tissue sarcoma and i have got him on the budwig protocol mixed with the traditional treatments.
    Any input will be appreciated.

    Thank you and good luck on the progress.
  • ErnieB3
    ErnieB3 Member Posts: 3
    cszj said:

    Liposarcoma in the abdomin
    So happy to hear you have had success! My husband was "misdiagnosed" with renal cell cancer 18 months ago. The mass was found and it was engulfing his kidney. We were told to see a urologist immediately and that the kidney had to come out.
    2 weeks later, it did, but then pathology didn't know what type of cancer it was. After 2 weeks of testing and sending it to Brigham Young in Boston, it was determined to be a liposarcoma. Our oncologist in Jersey strongly recommnended we go to Sloan Kettering in NY as they had specialists there who see this cancer much more often than anyone else.
    There is residual cancer tissue remaining from his initial surgery, and the doctor at Sloan has been monitoring it for the past 18 months. Last September, they had to go into his lung to take out a small spot which they believe was a metastisis. The residual cancer tissue has not moved or grown since his initial surgery, however, dr. says it must come out sooner or later. They consider it to be non-aggressive which is good, but it can turn at any time. Chemo does nothing for this type of cancer and surgery is the only solution. Chances are very high that once removed, it will recurr again, and then surgery will be needed again. It has been a difficult road so far, and we have a limited support system. We have two children, 15 and 11. This has turned our lives upside down. If you or anyone has some information about this type of cancer, I would appreciate hearing more. My prayers are with you as we all battle this horrible disease.

    Liposarcoma of the abdomen
    During a routine examine Dr. Schriedel tapped my belly on the left side. I felt a twinge. Ok, he said, your spleen is enlarged. I said what the heck is that all about. Pretty light response. Well, after a MRI, I had surgery and they took out my left kidney, spleen and colon resect. The spleen and kidney were surrounded. They also removed a 7.5lb mass. They sent it to Cleveland. By the way? That is the most of me I'd like to see go to Cleveland.
    Well, I was sent to Dr. Guehaja at the Edward Cancer Center in Naperville. She put me through two rounds of Chemo. It helped but not enough. THen I went though another four rounds and that helped a bit more. She sent me to see Dr.Undevia at the Masonic Hospital Cancer center. He put me on Vitrial. That helped a bit, it killed the cells in the middle of the four little tiny tumors on my diaphram. There was a little spot on my Lung, but the Dr that did the biopsy missed. Anyway, last ct can showed nothing on my lung. I am waiting to start another Trial after New Years. The cancer is not so much a worry as just keeping up with the side effects of kidney and spleen and colon damage.
    Surgery is not an option, there are to many nodules. But the Chemicals seem to be keeping them at bay. Check with other sources of treatment of Sarcoma. So far, the greatest danger for me was the chemo. The Creticos Center at the Masonic Hospital in Chicago has the Gilda Center in it as well. Evie Sprague is the Clinical Care Coordinator, she is quite familier with Sarcomas. I would recommend talking with her. I will forward her phone number if you want. Ewb_3@comcast.net is my emial address.
  • clerkin
    clerkin Member Posts: 1

    Keepin praying, keep faith miricals do happen
    I am a 14 year cancer survivor and I had soft tissue sarcoma in my left arm. I it start out as the size of a pea when I was 17 year and was misdiagnosed as fatty tissue it didn't start growning until I was 19 year old it got to the sized of a golf ball my sister encourage me to go to a specialist and he was not clear on what it was. I got a biopsy done and it came back cancerous. The surgeon did surgery. I assuming he never perform surgery on this type of cancer and he removed it wrong. I found 2 month later there were piece still left in my are. I then went to Cleveland Clinic they took Awesome care of me.
    I had a 25% chance. I was told my sarcoma was in stage 5 the last stage. I had get surgery again and the rest of the sarcoma removed. I choose not to get amputation of my arm and chemotherapy. I figure if it was in its last stages it had already spread. I did radiation treatment and I have been in remission for 14 years. Keep hope, keep praying, and keep your spirit up. During my fight I kept my spirit up and kept living. I went to my treatment like I was going to see my future and my faith played a huge role

    synovial sarcoma
    it is so important to stay strong and to have strong faith, this is the only thing that us goind when my 12 yr old son was diagnosed with synovial sarcoma in his foot.
    like you amputation was mentioned but we went with other options as my son is a very keen footballer.our motto at home is POSITIVE MENTAL ATTITUDE.
  • lesslie
    lesslie Member Posts: 6
    clerkin said:

    synovial sarcoma
    it is so important to stay strong and to have strong faith, this is the only thing that us goind when my 12 yr old son was diagnosed with synovial sarcoma in his foot.
    like you amputation was mentioned but we went with other options as my son is a very keen footballer.our motto at home is POSITIVE MENTAL ATTITUDE.

    so? how are your son now? whas has happened since then?
    in any case, always keed this positive mental attitude, it is all what we can have for us for sure.
  • nataliet2105
    nataliet2105 Member Posts: 1
    fibromatosis and Gleevec
    I'm 23 and have a soft tissue non cancer tumor in my calf. Officially fibromatosis. Very rare tumor etc. I was on Chemo when I was 15 and it seemed to stop the growth. I'm still endure pain everyday. I recently moved to Boston where a sarcoma specialist is wanting to put me on Gleevec. Not sure whether to go for it and try or wait it out. Like I said I don't have cancer but it is a highly aggressive tumor. Can't do surgery because of size and location. It doesn't really interfere with my everyday life -- yes painful but I can live with it and have been for 7 years. Has anyone been on Gleevec for something similar and if so how did you react? Side effects etc??
  • lmcgra
    lmcgra Member Posts: 4
    571er said:

    HOw are things going for you now? I had abdominal sarcomas since 1992. Every 2 years it returned and had to have more surgery, radiation, and chemo. By 1998 my body couldn't take any more surgery so I enrolled in a study of the drug Gleevic. I am in total remission now and anxiously awaiting the two year mark.

    angiosarcoma of the soft skin tissue
    Just wanted to let you know that someone is here if you ever want to talk. I was diagnosed on June 9th with angiosarcoma of the soft skin tissue and the week before the doctors removed 10 pounds of skin where the 10+ cm tumor was on my abdomen. I am still healing from the surgery. Does anyone know what kind of treatments there may be? I have to see a radiation and chemo doctor at the end of this coming week.

    I am trying to remain positive and pray every single day that there may be an answer for ALL of us to be healed. May God Bless ALL of you and if anyone out there wants to talk, please do.