LONG TERM SARCOMA SURVIVORS WANTED
Comments
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Myxoid fibrosarcomapsek927 said:I am 2 years out from
I am 2 years out from surgery and radiation. Myxoid Liposarcoma of the left thigh (23 cm). Scans of my leg and lungs have been clean, so far. Two years probably doesn't sound like a "long term" survivor, but I am so grateful and humbled to be here!
Hi, two years sounds encouraging, because I have heard that these sarcomas can reappear within two years. I have had two operations on my left thigh for myxofibrosarcoma, and 32 radiation treatments since January 2010. In July 2010, I saw my Oncologist, and I haven't had any scans since before the operation. I'm nervous about this, and was wondering how often are scans of the original site and lungs taken. My next appointment with my Oncologist is in February.0 -
malignant fibrous histiocytoma
I have malignant fibrous histiocytoma MFH. Does anyone else have that type of Sarcoma. I was diagnosed about 7 months ago. Had 2 surgeries and 30 radiation treatments. Now I go every 3 months for an MRI and CAT scan at Seattle Cancer Care Alliance. Occurence was the upper right thigh.0 -
2 surgeries, almost 2 yearsjjb2497 said:malignant fibrous histiocytoma
I have malignant fibrous histiocytoma MFH. Does anyone else have that type of Sarcoma. I was diagnosed about 7 months ago. Had 2 surgeries and 30 radiation treatments. Now I go every 3 months for an MRI and CAT scan at Seattle Cancer Care Alliance. Occurence was the upper right thigh.
I was 1st diagnosed with a huge 12.5 cm Leiomyosarcoma in my duodenum in my abdomen which underwent a Whipple surgery to remove. I didn't need chemo as there was no metastases but then just after 1 year my cancer returned and I underwent another surgery. It was rough having another massive surgery through the same scar tissue and same point of entry. I'm awaiting the start of chemo and probably GLEEVEC now as I also have a small cholangiocarcinoma. Anyone have similar experience? The truest thing I can say is that while cancer may strip away parts of your body NEVER let it strip away your soul and spirit.0 -
liposarcoma in 1976 but I am still here
I had limb sparing (right thigh) surgury in 1976 along with radiation. Have full use of my leg with swelling and pain that does not hold me back. Just found a quarter size lump on my right arm. Was told it is just a fatty tumor after an MRI but know better than to stop with a local DR.
Jennie0 -
breast angiosarcoma survivor 1 yr.jenmessley said:liposarcoma in 1976 but I am still here
I had limb sparing (right thigh) surgury in 1976 along with radiation. Have full use of my leg with swelling and pain that does not hold me back. Just found a quarter size lump on my right arm. Was told it is just a fatty tumor after an MRI but know better than to stop with a local DR.
Jennie
secondary breast angiosarcoma. caused by radiation for breast cancer. rare. did chemo, had surgery. doing good. hope to be a long term survivor.0 -
hardware and long term survivorFunnyFace said:Hardware and Long Term Survivor
I am blessed to be able to say " 21 yrs of being cancer free...and counting" I was dx with osteosarcoma of my right femur and knee in summer of '89 I was 13 y/o. I had my main surgery in which they removed the tumor and replaced my femur and knee with implants, have had 3 surgeries besides main one(femur implant broke in half, knee slid out of place and didn't have much range in motion of knee) and 12 months of chemo. I have been healthy since then and I haven't had surgery since my Junior in high school (a very long time ago).
A year ago I fell and broke my knee cap (which I didn't even know I had one on my artificial knee)got away with wearing a cast for about a month instead of surgery (had no insurance at the time). And a year later a screw came out of the part where my femur implant meets knee. I will be having surgery in October to replace most screws of the lower femur implant and a total knee replacement.
I am feeling a bit "jumpy" about having surgery...it's been a long time since I have had one. But I faith everything will turn out well. I will be better off with a "new" knee I am sure they are a lot better now a days then when I was a kid : )
Congratulations to all you survivors!!!
21 years!! that is awesome!! It's November now so I am hoping your surgery turned out ok! I bet you with the advancement in technology your knee will feel so much better after you recover! Hope all is well!0 -
Survivor for 18 years now!
I am a long term survivor. I was diagnosed with a synovial sarcoma in 1991 - when I was 13. I found the lump in my right abdominal wall. It was very rare back then and is an unusal place for a sarcoma of this type. I had the tumour removed. It was 4cm in diameter. i had radiotherapy every day after school for about 4-6 weeks. I had regular check ups for the next 10 years.
I am now 31 and perfectly healthy and have had no further problems. Other than the large scar on my abdomin and the large square where I had radiotherapy (which after 18 years has never been the same colour as my left healthy side of skin).
I can honestly say that it hasnt effected my life that much - other than I have never been confident to wear any midriff or bikini tops becasue of the scar and discolouration of my skin from the radiotherpay. I also try to live each day - as I know things could have been so different. Am very grateful I was one of the lucky ones.
xxx0 -
10 year osteosarcoma survivorJbean3303 said:10 year osteosarcoma survivor!
My name is Jill and I have been an osteosarcoma survivor for 10 years now! I decided to try and make a different in the best way I knew how.... Im now an Oncology RN in Philadelphia. Actually, in the same office where I was treated. I now work with a group that does a ton of Sarcoma research trials! Im hoping to get rid of this disease and everything about it.
I go to the CTCA in Philadelphia. Is this where you are?0 -
Thank you!crazy98 said:hardware and long term survivor
21 years!! that is awesome!! It's November now so I am hoping your surgery turned out ok! I bet you with the advancement in technology your knee will feel so much better after you recover! Hope all is well!
Hi "crazy98" Thank you and yes my surgery went extremely well (my doc is awesome)! He ended up just replacing all the screws on prosthesis. Doc check knee and femur and everything looked great for now will need replacement maybe in 10yrs. Right now I am getting physical therapy getting my muscles stronger than before. It's not easy but it feels great..my therapist is "rocks"..he has gotten me to bend knee more than before, leg press more weight then I ever thought possible, and helping walk "normal" something I haven't done since my first surgery. Congrats to you for celebrating your 11 years (AWESOME)! Hope all is well with you and Best Wishes for 20110 -
malignant peripheral nerve sheath sarcomaMarvusman said:2 surgeries, almost 2 years
I was 1st diagnosed with a huge 12.5 cm Leiomyosarcoma in my duodenum in my abdomen which underwent a Whipple surgery to remove. I didn't need chemo as there was no metastases but then just after 1 year my cancer returned and I underwent another surgery. It was rough having another massive surgery through the same scar tissue and same point of entry. I'm awaiting the start of chemo and probably GLEEVEC now as I also have a small cholangiocarcinoma. Anyone have similar experience? The truest thing I can say is that while cancer may strip away parts of your body NEVER let it strip away your soul and spirit.
Dear All,
My name is Nela and I am 33 years old. Although I have been reading your posts since December 2009 when I was diagnosed with malignant peripheral nerve sheath sarcoma, is only now, one year later, that I dare to post something myself.
I think that my story is good even though I have been through a lot of bad, I want to tell you that things can look really bad at some point but get better and improve so don’t give up keep on the fight. Here it goes (I am sorry is a bit too long and my English not the best)
In June 2009 I discovered a hard lump in my right groin at the same time that I experienced strong pain on my right leg. The doctor said he didn’t know what I had but probably nothing serious and sent me home (this happened in Denmark, the place where I was working at that time). Next day the pain in my leg became unbearable and so my doctor arranged me an appointment at the hospital. Unluckily, I didn’t have time to get there because I got unconscious wile I was getting ready to get out of my place. Luckily, a guy that came to check the heating system in my apartment was knocking very strong at my door and I woke up in the floor next to the door with strong pain on my chest and feeling awful. The guy called the ambulance and in the hospital they diagnosed a thrombosis on my right leg that provoked a lung embolism, my heart could not take the extra pressure in my lungs and that was the reason I collapsed.
The doctors in Denmark said that I was too young to have thrombosis but after some test they concluded that it was caused by taking contraceptive pills. They ignored completely the lump in my groin and said it would disappear by itself even though I kept asking if this lump could be the cause of the thrombosis. As three moths later the lump hadn’t disappear and my leg was still swollen, I decided to go for a second opinion to a specialist a friend recommended me in Belgium (the country of my nationality). There, the doctors found immediately that the cause of thrombosis and the lung embolism was the lump on my groin (as I suspected) since it was pushing on my artery and vein.
The doctor in Belgium seemed in a hurry to removed the tumour cause it could cause a second lung embolism and scheduled a surgery in two weeks time. Unfortunately, I had a second lung embolism before the surgery came and they had to operate me in an emergency to put a filter on my cava vein to avoid more blood clothes to go into my lungs. The second lung embolism was worse than the first and let me with strong pains in my lower back. The treatment for lung embolism is a very powerful blood thinner that dissolves the clothes in the lungs but the risk of internal bleeding is very high (and I was having it for the second time). So I was in bed for two weeks wile having this treatment and during this time I was not allowed to move or get up even to the toilet. I was also bleeding thorough every single hole in my body and spiting blood from my lungs!
After these two long long weeks came the operation which meant one week more at the hospital. At this point I still didn’t know what kind of tumour I had and the doctors claimed that it could be anything from nothing serious to very serious. I finally could get back home after three weeks in the hospital in November. It was in the beginning of December when I was still recovering from the surgery that I got the diagnosis: malignant peripheral nerve sheath sarcoma. We started immediately talking about treatments: chemotherapy and radiotherapy.
The operation had gone well and the doctor had been able to remove the tumour completely and reconstruct the artery. The surgeon told me that he had decided to treat the tumour as if it was malignant from the beginning so we had nothing to regret afterwards (thank god). Even though the tumour was completely removed I had to go through chemotherapy because of the kind of cancer and because I had lung embolisms that could have increased the risk that a cells escaped from the tumour. On the 14 of December 2009 I started the first of five session of chemo each one lasting five days which I had to spend at the hospital. The whole process took around six months. Each time I had the chemo I was very sick and my white cells went very low increasing the risk of infection. Once I even had an infection which cost me five additional days to the five of the chemo in the hospital including my birthday and by New Years Eve I begged the doctors to let me go home. I had never felt as lonely as that before, even though I wasn’t lonely, my family came to support me and my husband was with me all the time. After the chemotherapy came 35 doses of radiotherapy, and I finished in the beginning of August 2010.
The recovery after the last chemo has been quite impressive, I put on the weight I had lost, my immune system is almost normal, all the pain from the embolism have disappeared although I lost a small part of my right lung (scar tissue due to the embolisms) the doctor told me that our lungs “are over equipped” and they can compensate rather good the “missing part” I fact I don’t feel any difference with before to ne honest.
My leg recovered also very well from the operation although radiotherapy has caused it to swell and get a bit stiffer than before but I can walk normally.
After the last radiotherapy I have been enjoying life and trying to accept all the changes in my life. Since then I had three scan controls which have been clear and I hope it continues like that. I have been travelling a bit with my husband and I intend to go back to work next February 2011.
I have to admit that although I am still able to enjoy life and now even bad wine tastes good I still get very nervous when I have an appointment at the oncology department or when something hurts. I cannot help thinking that the cancer could get back. However, I keep fighting: I got enrolled in Yoga and Pilates classes, I keep doing my painting hobby and reading, I love eating and drinking my glass of red wine with dinner. My hear has started to grow again and even when I had a very long and wild curly hear before my new hair looks very strong and healthy and everybody tells me short hair looks good on me.
I don’t know what the future is bringing, but again no one knows. Even healthy people don’t know it. So I try to enjoy these months of healthiness and never ever lose the hope that they will become years…please never give up keep on the fight.
PS. My next PET scan will be in January, I hope and trust that it will be clear but if not… I will fight again. And please if you have questions or want to share something feel free to contact me.0 -
Fighting the evil beastSphinx said:malignant peripheral nerve sheath sarcoma
Dear All,
My name is Nela and I am 33 years old. Although I have been reading your posts since December 2009 when I was diagnosed with malignant peripheral nerve sheath sarcoma, is only now, one year later, that I dare to post something myself.
I think that my story is good even though I have been through a lot of bad, I want to tell you that things can look really bad at some point but get better and improve so don’t give up keep on the fight. Here it goes (I am sorry is a bit too long and my English not the best)
In June 2009 I discovered a hard lump in my right groin at the same time that I experienced strong pain on my right leg. The doctor said he didn’t know what I had but probably nothing serious and sent me home (this happened in Denmark, the place where I was working at that time). Next day the pain in my leg became unbearable and so my doctor arranged me an appointment at the hospital. Unluckily, I didn’t have time to get there because I got unconscious wile I was getting ready to get out of my place. Luckily, a guy that came to check the heating system in my apartment was knocking very strong at my door and I woke up in the floor next to the door with strong pain on my chest and feeling awful. The guy called the ambulance and in the hospital they diagnosed a thrombosis on my right leg that provoked a lung embolism, my heart could not take the extra pressure in my lungs and that was the reason I collapsed.
The doctors in Denmark said that I was too young to have thrombosis but after some test they concluded that it was caused by taking contraceptive pills. They ignored completely the lump in my groin and said it would disappear by itself even though I kept asking if this lump could be the cause of the thrombosis. As three moths later the lump hadn’t disappear and my leg was still swollen, I decided to go for a second opinion to a specialist a friend recommended me in Belgium (the country of my nationality). There, the doctors found immediately that the cause of thrombosis and the lung embolism was the lump on my groin (as I suspected) since it was pushing on my artery and vein.
The doctor in Belgium seemed in a hurry to removed the tumour cause it could cause a second lung embolism and scheduled a surgery in two weeks time. Unfortunately, I had a second lung embolism before the surgery came and they had to operate me in an emergency to put a filter on my cava vein to avoid more blood clothes to go into my lungs. The second lung embolism was worse than the first and let me with strong pains in my lower back. The treatment for lung embolism is a very powerful blood thinner that dissolves the clothes in the lungs but the risk of internal bleeding is very high (and I was having it for the second time). So I was in bed for two weeks wile having this treatment and during this time I was not allowed to move or get up even to the toilet. I was also bleeding thorough every single hole in my body and spiting blood from my lungs!
After these two long long weeks came the operation which meant one week more at the hospital. At this point I still didn’t know what kind of tumour I had and the doctors claimed that it could be anything from nothing serious to very serious. I finally could get back home after three weeks in the hospital in November. It was in the beginning of December when I was still recovering from the surgery that I got the diagnosis: malignant peripheral nerve sheath sarcoma. We started immediately talking about treatments: chemotherapy and radiotherapy.
The operation had gone well and the doctor had been able to remove the tumour completely and reconstruct the artery. The surgeon told me that he had decided to treat the tumour as if it was malignant from the beginning so we had nothing to regret afterwards (thank god). Even though the tumour was completely removed I had to go through chemotherapy because of the kind of cancer and because I had lung embolisms that could have increased the risk that a cells escaped from the tumour. On the 14 of December 2009 I started the first of five session of chemo each one lasting five days which I had to spend at the hospital. The whole process took around six months. Each time I had the chemo I was very sick and my white cells went very low increasing the risk of infection. Once I even had an infection which cost me five additional days to the five of the chemo in the hospital including my birthday and by New Years Eve I begged the doctors to let me go home. I had never felt as lonely as that before, even though I wasn’t lonely, my family came to support me and my husband was with me all the time. After the chemotherapy came 35 doses of radiotherapy, and I finished in the beginning of August 2010.
The recovery after the last chemo has been quite impressive, I put on the weight I had lost, my immune system is almost normal, all the pain from the embolism have disappeared although I lost a small part of my right lung (scar tissue due to the embolisms) the doctor told me that our lungs “are over equipped” and they can compensate rather good the “missing part” I fact I don’t feel any difference with before to ne honest.
My leg recovered also very well from the operation although radiotherapy has caused it to swell and get a bit stiffer than before but I can walk normally.
After the last radiotherapy I have been enjoying life and trying to accept all the changes in my life. Since then I had three scan controls which have been clear and I hope it continues like that. I have been travelling a bit with my husband and I intend to go back to work next February 2011.
I have to admit that although I am still able to enjoy life and now even bad wine tastes good I still get very nervous when I have an appointment at the oncology department or when something hurts. I cannot help thinking that the cancer could get back. However, I keep fighting: I got enrolled in Yoga and Pilates classes, I keep doing my painting hobby and reading, I love eating and drinking my glass of red wine with dinner. My hear has started to grow again and even when I had a very long and wild curly hear before my new hair looks very strong and healthy and everybody tells me short hair looks good on me.
I don’t know what the future is bringing, but again no one knows. Even healthy people don’t know it. So I try to enjoy these months of healthiness and never ever lose the hope that they will become years…please never give up keep on the fight.
PS. My next PET scan will be in January, I hope and trust that it will be clear but if not… I will fight again. And please if you have questions or want to share something feel free to contact me.
This has been such a long and lonely road, since my hysterectomy and diagnosis of uterine carino sarcoma stage 3 in May of last year. Before that I bled all the time and had a difficult time going anywhere. Then in September it came back. So I had radiation, which was horrid, but it did stop the tumor from bleeding - now I just have a fowl smelling discharge. Laundry is an everyday affair for me. I guess it's a blessing in disquise, cuz it keeps me very busy. Now I'm a genuine kotex and rag expert, I've got my system down. Plus we had to move during my radiation, unfortunately a 2 story house. I'm up and down stairs all day . . . wears me out.
Just started chemo Monday and am feeling better now. Truly, I was petrified of what chemo would be like, especially after what I saw on you tube. I want to survive so badly so I can be here for my hubby, kids and their young ones. Doc wants me to do ct scan after my 2nd chemo, cuz there's 2 nodules on my lungs.
Wondering if any of you gals have had a bleeding tumor that went away and what it was like dealing with it.
Sphinx, I'm so glad that you are clear and pray you stay that way in January too0 -
Myxois fibrosarcoma reply to suzie Sunshinesuzie sunshine said:Myxoid fibrosarcoma
Hi, two years sounds encouraging, because I have heard that these sarcomas can reappear within two years. I have had two operations on my left thigh for myxofibrosarcoma, and 32 radiation treatments since January 2010. In July 2010, I saw my Oncologist, and I haven't had any scans since before the operation. I'm nervous about this, and was wondering how often are scans of the original site and lungs taken. My next appointment with my Oncologist is in February.
Hi Suzie
You and I are very similiar. I went to 4 doctors to get aomeone take notice and remove my lump which they thought at first was a sebacceous cyst and then a lipoma near my elbow. finally I convinced a General Practitioner to send me for tests. there was an immediate response and like you I had 2 surgeries to get a clear margin when the path results showed that it was a high grade myxofibrosarcoma. I too had 32 sessions of radiation last Christmas and January. One of the CT scans showed a granuloma in my lung which had not shown up on previous scans so I had to have another CT scan of lungs, abdo and pelvis 3 months later. this scan showed no change. I am due for another scan now but will wait until after Christmas. I too think about the 2 year period and then getting to 5 years....All the best..except for the site of the sarcoma we seem to almost match neck in neck so to speak..the cancer centre hasn't told me to return so I am back in the hands of teh General Practitioner and I find I am keeping an eye on when I have to have scans..it would be nice to have an oncologist watching over me at least annually to discuss all clear. Hope you do well.0 -
Rhabdomyosarcoma survivor since 1983
Diagnosed in second grade at age 7 with Rhabdo. Softball sized tumor originated in my prostate and 22 golf ball sized tumors spread to my lungs. I started a blog about my time with cancer this month for me and my kids to read. My mom kept a daily journal of the battle and I am using that and what I remember. If you are interested the link is below.
http://www.instinctive-affection.blogspot.com/0 -
hellobellasbell said:Sarcoma survivors
I had liposarcoma a tumor in my thigh 11cm x 11cm,got chemo/surgery/radiation. That was in summer/2007-Jan/2008. I've been cancer free since then. Although I have had pain and problems with pain still, walking,falling at times, I know Im lucky to be alive. I think I may have been over-radiated and I have alot of tissue/nerve damage. I would love to see a sarcoma group started. There are so many groups for other cancers,when I was looking for info. and help, I couldnt find anything. Im always looking for sarcoma survivors to see if they have had the same experiences as Im having and how they handle the pain,etc. Im continuing to live with on a daily basis. I hope people respond and if anyone knows of a sarcoma survivor group(I live in Tampa,FL)and even the hospital(HLee Moffitt) couldn't find sarcoma groups in Fla.It would be really nice to see how others have dealt with what Im dealing with.
My wife Robin whom I love so much has been diagnosed with Leiomyosarcoma and has been fighting the disease since 2005. I have found someone in Tampa that is going to help us through this journey and would love to tell you about it. Please email me at ksodders@jlroberts.com I will pray for you and your family. Please keep us in your prayers aswell. Stay strong and God does answer prayer.
Kendall from Mississippi0 -
Hi.I am newly diagnosed with LMS.Mine also was found after a routine Hysterectomy.I am not undergoing my treatment at a Sarcoma center,but want to because of all Ive been reading. I am scheduled to begin with radiation then follow with chemo. I would welcome any info you could share with me.I love your attitude about your hair loss. Quite frankly, I could care less about my hair.I hope you are doing well.I will keep you in my prayers.kbranoff said:uterine leiomyosarcoma ma
My cancer was found in the uterus after a routine hysterectomy to remove a large fibroid. A week later my doc called and said they had found cancer. I was shocked. Of course I was the lucky 4 in a miliion that get this type of cancer. I currently undergo treatment at Kamanos Cancer Center in Detroit. Rated #1 two years in a row. I consulted with them and a week later they had me set up for chemo. They work really fast. Sent me to a chemo class and off I go. I am receiving Gemzar and Taxotere. It's working. I have been on chemo for almost eight months with the only side effect being hairloss. That is the hardest but after a while, you get over it. Trust me. I had long beautiful hair and I almost don't even miss it. My wig looks great and I never have a bad hair day. With each scan, there has been shrinkage in my tumors. My doctor said he's never gone past 6 rounds and I am going on 11. He is quite impressed with my case. This cancer spread really quick. In dec. of 08, I had one small nodule on my lung. By June of 09 I had several. They couldn't confirm it was the LMS until I had a lung biopsy. The nodules had to be at least 1cm before doing a biopsy. By then I had several. I hope you are seeing a sarcoma specialist. This is very important. I am only 39 with 3 teenagers. I am going to kick this cancer's ****. Fight like a girl and beat this with me. Stay off of the internet except for support groups or survival stories. Alot of the info you get online is outdated and can scare the hell out of you. You are not a statistic you are an individual and everybody tolerates things differently. These docs are great but they are not God.0 -
24 year survivor
I had rhabdomyosarcoma in 1984. At that time, not much was known about curing rhabdomyosarcoma. My doctors gave me treatments found at large universities and I survied. I have been married for 30 years and have 3 children. I am so lucky.
My maintenance isn't over. I need to have surgeries to keep my face from falling off, but it is an annoyance at this point.
You can do it. Doctors don't give people much hope with these kinds of cancers. I wasn't given any hope to survive a year. But I did.
Finally about 5 years ago I had a doctor tell me I would not have a reoccurance! Well thank you. I was 19 years beyond my treatments.
Just goes to show you the most cautious news comes from the doctors.
Blessings to you all, have a strong faith and resolve and you can make it.0 -
5 year survivor of Angiosarcoma
This is cancer of the blood vessells. I am now having my second operation with end
the last three months. I thought I had this whipped but has come back with a vengence.
All of this at this time is local and has not metastasized to the lungs or liver. My next Ct scan will be sometime in Feb, 2011. I would like to hear from other people that have had this type of sarcoma.0 -
Clear Cell Sarcomaccsdad said:Clear Cell
Cyclegirl, could you give me some idea of the treatment you went through with your clear cell sarcoma. my son has had six surgeries last two in his lungs clean margins, but now they want to use chemo. Just wondering what was your case. Anyone reading this post has info on chemo and clear cell it would be appreciated.
thank you
My clear cell was on the bottom of my left foot. I am lucky that it has not spread anywhere else. The only treatment for it was partial amputation of my foot. I still have 1/2 of it. 9 months after surgery, they say I am cancer free. I have scans every 3 months. I did not have chemo or radiation because they said the margin was clean & the benefits did not outweigh the bad effects of the treatment.
"Clean margins" for your son sounds really good. That was the best news I heard also. How old is your son? How was his diagnosed? Did he have chemo? I'm sure you have the best doctors for him & we just have to have faith in them.0 -
Clear Cell Sarcomamb112660 said:Hi.I am newly diagnosed with LMS.Mine also was found after a routine Hysterectomy.I am not undergoing my treatment at a Sarcoma center,but want to because of all Ive been reading. I am scheduled to begin with radiation then follow with chemo. I would welcome any info you could share with me.I love your attitude about your hair loss. Quite frankly, I could care less about my hair.I hope you are doing well.I will keep you in my prayers.
My sarcoma is not the same as yours but you really need to see a sarcoma specialist. I don't know where you are located but I have an excellent doctor in Pittsburgh, Pa. During my diagnosis & surgery, I had 3 doctors & they consult with each other weekly about all of their patients. They work as a team & are on the same page. Even though I talked to different doctors they all knew my case & I could tell they work together for their patients. Hope this helps. If you would like more info, Dr. Tawbi works at the Hillman Cancer Center in Pittsburgh, Pa.0 -
chemo and CCSccsdad said:Clear Cell
Cyclegirl, could you give me some idea of the treatment you went through with your clear cell sarcoma. my son has had six surgeries last two in his lungs clean margins, but now they want to use chemo. Just wondering what was your case. Anyone reading this post has info on chemo and clear cell it would be appreciated.
thank you
My boyfriend had CCS and was treated at the mayo clinic, dana farber (where a few clinical trials are being offered to CCS individuals) and another hospital in the midwest; all of his docs had treated CCS patients previously and had never yielded a positive or even medial result from traditional chemotherapy :-( I'm not sure what docs or other information you have received on oral chemo trials, etc. but I would suggest looking into dana farber in boston (docs butrynski and wagner are two that I know are directly involved in these trials). Also, please private message me and I can get you into contact with several other individuals with CCS - they are all wonderful and supportive! I hope this message finds your son doing well and beating this terrible cancer!0
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