Undifferentiated Sarcoma

jwfjlf
jwfjlf Member Posts: 1
edited March 2014 in Sarcoma #1
My son (age 25) has been had surgery and is currently undergoing chemo treatment for a high grade, undifferntiated sarcoma that originated in his stomach. By the time the tumor was removed it was the size of a vollyball and had invaded his liver, pancreas, lung, and gallbladder. After surgery the tumor grew back as big as it was originally while waiting for diagnosis and treatment to start. He is now on his third round of chemo which involves a week long hospital stay each time he gets treated. He is having such a rough time with all of this. Even when he is not getting chemo he sleeps a great deal and has very little appetite. It seems the only thing he wants to do is watch tv and sleep. He has had lots of supportive friends that try to cheer him up and get him moving but nothing seems to work. I guess he just doesn't feel good enough to do anything. He is being treated at USC and has great doctors. They say he is improving but I'm just not seeing it. Anybody out there with a similar experience during treatment? Also, are there any survivors out there that were diagnosed with undifferentiated sarcomas? It is such a rare type of sarcoma and I have not been able to find much info on it. My son has been so sick for the past four months that I am just beside myself as to how to help him. I'm trying my best to stay positive and upbeat but lately it has been really hard. I would appreciate any advice anyone has to offer.

Comments

  • sarahsdh
    sarahsdh Member Posts: 1
    Undifferentiated Sarcoma Survivor
    I was diagnosed with an undifferentiated sarcoma in 2005. I was 20 years old and it was a hard ordeal, not just for me, but for my family as well. I know there isn't a lot of information about this type of sarcoma, believe me I spent a lot of time searching the net for information. My best advise is to talk to your doctors, get all the information they can give you, ask questions, drive them up the wall with your questions! As for your son, I know that this is hard, I decided not to do chemo and radiation, I did have 2 sugeries, but I went with an alternative treatment center, where we modified my diet and exercise and worked with my stress levels. I was lucky enough to not have to spend too much time in the hospital, but I know that every time I go to get a check up, just walking through the door makes me depressed. I don't know much about your son, but don't let him lose the things he loves. Let him be himself. I think I lost a lot of myself because I let the cancer define who I was, but cancer is just a diagnosis, not a death sentence! Don't let it beat you, find something you love and hang on to it! Don't let it define who you are!
  • sarcomamom
    sarcomamom Member Posts: 2
    Undifferentiated sarcoma
    Your son is in my prayers.
    My daughter was diagnosed with Stage3/4 in the right lung. She had a similar brutal chemo treatment with hospital stays every three weeks. It extended her life so that she could have a pneumonectomy, which again helped her. I fully understand your desperation while watching your son suffer. My daughter lost interest and the strength to do many things. Favorite movies were a good respite. Also, staying with her in the hospital at night was hugely appreciated by her. We all took turns to make sure that she was never alone at night.
    The best that I could do was to help my daughter to accept God's will, whatever that may be.
    It was the hardest thing I've ever had to do. Stay positive as you and he carry out God's game plan. Say a prayer for strength every day, hour or minute that you need it. Your son worries about you and needs you.
    God bless your family.
  • mlppic
    mlppic Member Posts: 1
    My husband was diagnosed
    My husband was diagnosed with a dedifferentiated liposarcoma originating in his abdomen. The original site was defined as his mesentery (which feeds the colon). He was diagnosed in late April and by the time he had surgery in May his tumor was also the size of a volleyball. The surgery was very difficult and he lost a lot blood. While waiting for recovery, the tumor grew back and in 5 short weeks he had another bigger, more extensive surgery. The only good thing about the surgeries were that this tumor had not invaded his colon or other organs in the abdomen. He is now 3 weeks after surgery and starting chemotherapy next week. He too has no appetite, no desire to eat or keep hydrated or actively participate in life. He is beginning to sleep a lot. It is very hard to watch someone you care about be so sick and I guess I have to agree that maybe he just doesn't feel good enough to engage in living. I have not been able to find a lot of information on this aggressive type of cancer and you are the first person who has had a similiar story as ours. I too am searching for any info I can find on this rare, agressive type of sarcoma. Any information that anyone has would be very helpful. God bless everyone who is fighting this disease. Stay strong and remain hopeful!
  • rhenry3
    rhenry3 Member Posts: 8

    Undifferentiated sarcoma
    Your son is in my prayers.
    My daughter was diagnosed with Stage3/4 in the right lung. She had a similar brutal chemo treatment with hospital stays every three weeks. It extended her life so that she could have a pneumonectomy, which again helped her. I fully understand your desperation while watching your son suffer. My daughter lost interest and the strength to do many things. Favorite movies were a good respite. Also, staying with her in the hospital at night was hugely appreciated by her. We all took turns to make sure that she was never alone at night.
    The best that I could do was to help my daughter to accept God's will, whatever that may be.
    It was the hardest thing I've ever had to do. Stay positive as you and he carry out God's game plan. Say a prayer for strength every day, hour or minute that you need it. Your son worries about you and needs you.
    God bless your family.

    Embryonal Undifferentiated Sarcoma
    May I ask how old your daughter was? My son was dx with Embryonal Undifferentiated Sarcoma on Feb 6, 2009, he was six years old at the time. After 6 rounds of doxorubicin and ifosfamide, he received a liver transplant on May 29, 2009. We are currently waiting for follow up chemo and I am not sure if they will keep him on the same regimen or change his chemo treatment. He has already had more than the allotted amount of Doxorubicin so I know that won't be on the table this time but I don't know what else they will use. Where was your daughter treated? What was she treated with? How long did she have to fight this disease? How are you coping? Sorry to ask so many questions but up to this point I haven't even found anyone who has had the same dx. We have only been dealing with this for a few short months but it feels like an eternity already. The doctors keep assuring me that they removed all the cancer and he should be fine, but I am still scared. Plus, he has had fluid on his knee that started about the same time he first came down with the fevers. The doctors in Oklahoma completely ignored the leg pain and the doctors in Pittsburgh are just now taking a look at it. They have recently done a bone scan and an MRI and they say it is just fluid and no cancer, but this type of cancer cells can be found in fluid around joints so I am not convinced.
  • hOLLYz
    hOLLYz Member Posts: 1
    sarahsdh said:

    Undifferentiated Sarcoma Survivor
    I was diagnosed with an undifferentiated sarcoma in 2005. I was 20 years old and it was a hard ordeal, not just for me, but for my family as well. I know there isn't a lot of information about this type of sarcoma, believe me I spent a lot of time searching the net for information. My best advise is to talk to your doctors, get all the information they can give you, ask questions, drive them up the wall with your questions! As for your son, I know that this is hard, I decided not to do chemo and radiation, I did have 2 sugeries, but I went with an alternative treatment center, where we modified my diet and exercise and worked with my stress levels. I was lucky enough to not have to spend too much time in the hospital, but I know that every time I go to get a check up, just walking through the door makes me depressed. I don't know much about your son, but don't let him lose the things he loves. Let him be himself. I think I lost a lot of myself because I let the cancer define who I was, but cancer is just a diagnosis, not a death sentence! Don't let it beat you, find something you love and hang on to it! Don't let it define who you are!

    Undifferentiated Sarcoma Survivor
    Could you talk about the alternative path you chose? Could you share where you went and what resources you found most helpful? My sister was diagnosed with this in June. We are concerned about her lack of appetite and would like to help her make the most nutritious choices for her body engaged in such a fight.
    Thanks for any new light,
    Holly
  • LindaDawn
    LindaDawn Member Posts: 27
    Undifferientated embroyanal sarcoma of the liver survivor
    I had my liver resected twice and a tumor the size of a volleyball removed.I have not experienced any regrowth. I have just finished eight cycles of chemotherapy based on a regime used for Ewings sarcoma. It required hospital stays each time, two days and then six days, alternating. I managed to keep my appetite, food didn't taste good , but I was hungry. I was given steriods at the time of treatment which may have helped with this. I often was too tired to do anything. The fatigue can be overwelming. It also can be misconstrued as depression. I had to remind myself that I didn't feel as if I could be bothered to get up because I was physically fatigued not necesarily depressed. The symptoms seem so similar to me. I was very tearfull. I couldn't focus on reading or even watching tv for long. Everything seemed like too much trouble. I was glad my family let me take it at my pace. The best news is that I got through it three weeks ago and I now feel my vitality returning.
  • makenaleila
    makenaleila Member Posts: 1
    Hi, My 8 yr old daughter was
    Hi, My 8 yr old daughter was diagnoised with undiffernitiated high grade sarcoma last year. it was in her arm, and fully excised. How is your son? have you heard anything else about these kind of tumors? There is not much out there on them? Jennifer
  • rhenry3
    rhenry3 Member Posts: 8

    Hi, My 8 yr old daughter was
    Hi, My 8 yr old daughter was diagnoised with undiffernitiated high grade sarcoma last year. it was in her arm, and fully excised. How is your son? have you heard anything else about these kind of tumors? There is not much out there on them? Jennifer

    Undifferentiated Embryonal Sarcoma
    My son has been doing well. We are anxiously waiting for his 6 month, post transplant scans in November. I am desperately seeking information about this type of cancer. Unfortunately, there is not much information available. www.caringbridge.org/visit/ethanhenry3
  • howell58
    howell58 Member Posts: 13 Member
    rhenry3 said:

    Undifferentiated Embryonal Sarcoma
    My son has been doing well. We are anxiously waiting for his 6 month, post transplant scans in November. I am desperately seeking information about this type of cancer. Unfortunately, there is not much information available. www.caringbridge.org/visit/ethanhenry3

    sarcoma uncertainties
    Hello. My husband was diagnosed with retroperitoneal liposarcoma 2 yrs ago. Originally they thought it was renal cell/kidney cancer.
    He had a metastsis to the lung last year, taken out. They never got clear margins the first time, so that fatty tissue has been watched for 2 yrs at Sloan Kettering. It has now grown 1 cm so surgery #3 will take place on Nov. 16th.
    Can turn aggressive at any time, surgery is only recourse, chemo has no effect. High recurrence rate.
    It is just a guessing game, unfortunately, day to day you never never know if you are ok.
    Right now, praying he gets thru surgery ok, and this time they can get it all.
    From everything I've read about the different types of sarcomas, many are difficult to determine unless done by specialists in that field.
    God Bless everyone.
  • milenaisms
    milenaisms Member Posts: 1
    sarahsdh said:

    Undifferentiated Sarcoma Survivor
    I was diagnosed with an undifferentiated sarcoma in 2005. I was 20 years old and it was a hard ordeal, not just for me, but for my family as well. I know there isn't a lot of information about this type of sarcoma, believe me I spent a lot of time searching the net for information. My best advise is to talk to your doctors, get all the information they can give you, ask questions, drive them up the wall with your questions! As for your son, I know that this is hard, I decided not to do chemo and radiation, I did have 2 sugeries, but I went with an alternative treatment center, where we modified my diet and exercise and worked with my stress levels. I was lucky enough to not have to spend too much time in the hospital, but I know that every time I go to get a check up, just walking through the door makes me depressed. I don't know much about your son, but don't let him lose the things he loves. Let him be himself. I think I lost a lot of myself because I let the cancer define who I was, but cancer is just a diagnosis, not a death sentence! Don't let it beat you, find something you love and hang on to it! Don't let it define who you are!

    alternative treatment
    Hello Sara,
    Please let me know about the alternative treatment center, which helped you and something about the therapies you practice to stay cancer free. I had 2 surgeries, radiation, one unsuccessful chemo, and choose to have another chemo with dubious results. It starts next week. Meanwhile, I receive the advice of integrative medicine health care providers. I have been prescribed a diet plan, life changes such as stress management techniques and supplements including IV vit C. Since our sarcoma is so rare, any suggestions might help.
    Between my first and second tumors (just a few months apart), I have changed my diet and started some supplements. Obviously, it was not good enough, since the tumor came back.
    Best Regards,
    Milena
  • rhenry3
    rhenry3 Member Posts: 8
    rhenry3 said:

    Undifferentiated Embryonal Sarcoma
    My son has been doing well. We are anxiously waiting for his 6 month, post transplant scans in November. I am desperately seeking information about this type of cancer. Unfortunately, there is not much information available. www.caringbridge.org/visit/ethanhenry3

    Undifferentiated Embryonal Sarcoma
    13 months post dx-9 1/2 months post liver transplant. Last CT 2/18/2010 revealed "No Evidence of Disease". He is doing fabulous and will be starting soccer this week. Going back to Pittsburgh, PA in May for one year post transplant check up and surgery to remove port and to repair abdominal muscle they previously removed 40% of due to tumor invasion of the abdominal wall. Fingers crossed and praying hard.


    www.caringbridge.org/visit/ethanhenry3
  • Health Study
    Health Study Member Posts: 1
    Vaccines & Undifferentiated Sarcoma
    Often times when I lay out what I know to people it's as if they go into brain lock because it does not fit in what they are told by the medical establishment which is controlled & manipulated by the drug companies who profit from long term sickness & drug sales so never getting at the cause and the inexpensive cure does not support that industry.

    Most people don't know how to properly use keywords to get to the truth. I want to show you something. Due to my studies pertaining to vaccines and Corporate lies I have learned to always use the keyword "vaccines" in my searches so my first google search was "vaccine induced Undifferentiated Sarcoma". That was very interesting to find articles on Undifferentiated Sarcoma in cats caused by vaccines and that it can occur within days or up to 10yrs from the vaccine. Keep doing research along this line. If your son had any vaccines within the past 10 years there definitely could be a link but if you ask an MD he will automatically deny any relation to the vaccine. I have seen blatant vaccine reactions and death in both humans and dogs, I have pulled video from all over the world and no matter how obvious it is the medical profession and veterinarians are trained to deny any relation to prevent lawsuits.

    There are a number of things that take place in the body with vaccines, some people or animals are not noticeably affected by vaccines but there are bad batches & Bayer was found out to have discovered entire lots of bad batches of vaccines and instead of destroying the bad batches simply intermixed the bad batches with other lots then sent them out rather than lose money on the sales. Vaccines contain a modified disease, Mercury, aluminum, formaldehyde, ether, detergents & anti-freeze to protect them during winter shipping. Vaccines in general are carcinogenic due to the deadly content.

    Vaccines are not the only culprit. Mercury from industrial waste in fish, lead exposure. Breathing in gasoline vapors or car exhaust contain heavy metals. The body gets chemical over load of non organic synthetic substances that the human body was never designed to process or filter out but there are herbs that can flush out heavy metals or chelation therapy (EDTA) but the reason people succumb to cancers is really simple actually. The reason people get cancer is the same reason people get scurvy, it's really one in the same thing. Most people have heard of scurvy, what causes it and what cures it.

    There is a chain reaction which occurs when a person is not consuming green leafy vegetables. Greens are high in PH, the human blood must remain at 7.4 alkaline exactly like with aquatics or the fish in your fish tank in order to remain healthy. When the fish tank goes acid just like acidoses in the human then horrible things occur. Fungi begins to grow on the fish and will eat away at the fish like a cancer.

    In the human blood the red blood cells clump together like a twisted stack of coins to protect themselves from the hostile environment. White blood cells become lethargic and as a result cholesterol grows large enough to clog arteries, fungi grows in the blood but as soon as this persons PH Alkaline is restored the blood cells release, white blood cells become active again gobbling up cholesterol & gobbling up the fungi.

    If you remain in an acidoses state then the fungi grows internally. The bodies defenses build a skin layer around the tumor to prevent it from spreading but as long as the person does nothing to drastically change their diet then more tumors will grow killing the body. Alkalinity will shrink the tumors as proven in laboratory mice.
    The reason for the cellular breakdown in skin cancer cases is a deficiency of vitamin C or antioxidants all of which are in green leafy vegetables which do help detoxify, this is the downfall of America but the purpose of the drug companies is to sell patented drugs and the medical Drs make a fortune pushing those drugs, neither would be in business if they went into selling leaf lettuce & Broccoli which is the preventative and the cure.

    I took photos of skin and gum lesions caused by scurvy, photos of skin cancer & photos of certain types of fungi that eat lesions in the skin and some are identical & some very similar in nature. All of my information from many different sources ties all of this to one major cause, insufficient greens but also the use of medications, street drugs, alcohol, cigarettes and over exposure to chemicals and pollution all PH acid. Some people are tougher than others, emotional trauma, over stress or depression have negative affects on the health so tie in the right formula and it spells disaster for the body.
    Take some PH test strips, test your son's PH, you may notice he reads pure acid. You need to get him to a real health practitioner not the Medical drug pushing Quacks. The real doctors that actually heal people are in certified holistic medicine and certified nutritionists.


    google or youtube search:
    cancer is a fungi
    alkaline cancer cure
    acidosis in the blood
    vaccines autism
    vaccine lies
    holistic healing
  • Emilyfimily
    Emilyfimily Member Posts: 141

    Vaccines & Undifferentiated Sarcoma
    Often times when I lay out what I know to people it's as if they go into brain lock because it does not fit in what they are told by the medical establishment which is controlled & manipulated by the drug companies who profit from long term sickness & drug sales so never getting at the cause and the inexpensive cure does not support that industry.

    Most people don't know how to properly use keywords to get to the truth. I want to show you something. Due to my studies pertaining to vaccines and Corporate lies I have learned to always use the keyword "vaccines" in my searches so my first google search was "vaccine induced Undifferentiated Sarcoma". That was very interesting to find articles on Undifferentiated Sarcoma in cats caused by vaccines and that it can occur within days or up to 10yrs from the vaccine. Keep doing research along this line. If your son had any vaccines within the past 10 years there definitely could be a link but if you ask an MD he will automatically deny any relation to the vaccine. I have seen blatant vaccine reactions and death in both humans and dogs, I have pulled video from all over the world and no matter how obvious it is the medical profession and veterinarians are trained to deny any relation to prevent lawsuits.

    There are a number of things that take place in the body with vaccines, some people or animals are not noticeably affected by vaccines but there are bad batches & Bayer was found out to have discovered entire lots of bad batches of vaccines and instead of destroying the bad batches simply intermixed the bad batches with other lots then sent them out rather than lose money on the sales. Vaccines contain a modified disease, Mercury, aluminum, formaldehyde, ether, detergents & anti-freeze to protect them during winter shipping. Vaccines in general are carcinogenic due to the deadly content.

    Vaccines are not the only culprit. Mercury from industrial waste in fish, lead exposure. Breathing in gasoline vapors or car exhaust contain heavy metals. The body gets chemical over load of non organic synthetic substances that the human body was never designed to process or filter out but there are herbs that can flush out heavy metals or chelation therapy (EDTA) but the reason people succumb to cancers is really simple actually. The reason people get cancer is the same reason people get scurvy, it's really one in the same thing. Most people have heard of scurvy, what causes it and what cures it.

    There is a chain reaction which occurs when a person is not consuming green leafy vegetables. Greens are high in PH, the human blood must remain at 7.4 alkaline exactly like with aquatics or the fish in your fish tank in order to remain healthy. When the fish tank goes acid just like acidoses in the human then horrible things occur. Fungi begins to grow on the fish and will eat away at the fish like a cancer.

    In the human blood the red blood cells clump together like a twisted stack of coins to protect themselves from the hostile environment. White blood cells become lethargic and as a result cholesterol grows large enough to clog arteries, fungi grows in the blood but as soon as this persons PH Alkaline is restored the blood cells release, white blood cells become active again gobbling up cholesterol & gobbling up the fungi.

    If you remain in an acidoses state then the fungi grows internally. The bodies defenses build a skin layer around the tumor to prevent it from spreading but as long as the person does nothing to drastically change their diet then more tumors will grow killing the body. Alkalinity will shrink the tumors as proven in laboratory mice.
    The reason for the cellular breakdown in skin cancer cases is a deficiency of vitamin C or antioxidants all of which are in green leafy vegetables which do help detoxify, this is the downfall of America but the purpose of the drug companies is to sell patented drugs and the medical Drs make a fortune pushing those drugs, neither would be in business if they went into selling leaf lettuce & Broccoli which is the preventative and the cure.

    I took photos of skin and gum lesions caused by scurvy, photos of skin cancer & photos of certain types of fungi that eat lesions in the skin and some are identical & some very similar in nature. All of my information from many different sources ties all of this to one major cause, insufficient greens but also the use of medications, street drugs, alcohol, cigarettes and over exposure to chemicals and pollution all PH acid. Some people are tougher than others, emotional trauma, over stress or depression have negative affects on the health so tie in the right formula and it spells disaster for the body.
    Take some PH test strips, test your son's PH, you may notice he reads pure acid. You need to get him to a real health practitioner not the Medical drug pushing Quacks. The real doctors that actually heal people are in certified holistic medicine and certified nutritionists.


    google or youtube search:
    cancer is a fungi
    alkaline cancer cure
    acidosis in the blood
    vaccines autism
    vaccine lies
    holistic healing

    skin acidity
    Hi Healthy Study. Please don't work to sway folks to go holistic by misrepresenting what's correct and incorrect about the healthy human body.
    If you take a pH strip and lay it on your skin, it will *always* read acidic. Your internal pH and skin surface pH are two totally different things. The outer layer of the skin of a healthy human is between 4 and 6.5 with variance according to body location. It's *supposed* to be acidic. It assists in preventing water and other polar molecules from permeating our skin. Systemic disease, such as diabetes etc, dermatitis, eczema, etc etc will actually *decrease* the acidity of your skin.
    There are great benefits to some parts of holistic medicine. But, there are also great benefits to modern medicine as well.
    Telling somebody flat out to take their son away from the care of his current medical doctor (a "quack" in your terms), all because of a pH test strip, about which you are completely incorrrect? What are you thinking?
  • cariza
    cariza Member Posts: 1
    sarahsdh said:

    Undifferentiated Sarcoma Survivor
    I was diagnosed with an undifferentiated sarcoma in 2005. I was 20 years old and it was a hard ordeal, not just for me, but for my family as well. I know there isn't a lot of information about this type of sarcoma, believe me I spent a lot of time searching the net for information. My best advise is to talk to your doctors, get all the information they can give you, ask questions, drive them up the wall with your questions! As for your son, I know that this is hard, I decided not to do chemo and radiation, I did have 2 sugeries, but I went with an alternative treatment center, where we modified my diet and exercise and worked with my stress levels. I was lucky enough to not have to spend too much time in the hospital, but I know that every time I go to get a check up, just walking through the door makes me depressed. I don't know much about your son, but don't let him lose the things he loves. Let him be himself. I think I lost a lot of myself because I let the cancer define who I was, but cancer is just a diagnosis, not a death sentence! Don't let it beat you, find something you love and hang on to it! Don't let it define who you are!

    Undifferentiated sarcoma

    Hi can you please tell me what kind of sarcoma you had and what kind of alternative treatment you had? Thank you.

  • Jademama
    Jademama Member Posts: 1
    cariza said:

    Undifferentiated sarcoma

    Hi can you please tell me what kind of sarcoma you had and what kind of alternative treatment you had? Thank you.

    Hello, I just joined and have

    Hello, I just joined and have read the board. Your post is the most recent I see. I am just reaching out to anyone. We just found out that my 15year old daughter has cancer. They are calling it undifferentiated sarcoma. They have been doing biopsy after biopsy for weeks now. We are putting In her port next week. 

  • blanca5281
    blanca5281 Member Posts: 1
    edited October 2017 #17
    sarahsdh said:

    Undifferentiated Sarcoma Survivor
    I was diagnosed with an undifferentiated sarcoma in 2005. I was 20 years old and it was a hard ordeal, not just for me, but for my family as well. I know there isn't a lot of information about this type of sarcoma, believe me I spent a lot of time searching the net for information. My best advise is to talk to your doctors, get all the information they can give you, ask questions, drive them up the wall with your questions! As for your son, I know that this is hard, I decided not to do chemo and radiation, I did have 2 sugeries, but I went with an alternative treatment center, where we modified my diet and exercise and worked with my stress levels. I was lucky enough to not have to spend too much time in the hospital, but I know that every time I go to get a check up, just walking through the door makes me depressed. I don't know much about your son, but don't let him lose the things he loves. Let him be himself. I think I lost a lot of myself because I let the cancer define who I was, but cancer is just a diagnosis, not a death sentence! Don't let it beat you, find something you love and hang on to it! Don't let it define who you are!

    Sarcoma

    Hello,

    What alternative treatment center did you attend? My nephew has undifferentiated sarcoma and they have given him months to live.

    Thank you,

    Blanca Cooper

    [email protected]