high grade spindle cell sarcoma

Hi:

My brother, 49, has just been diagnosed with spindle cell sarcoma. I can't find much on it. He has done 3 days of Adriamycin, Cytoxan and vincristine. I don't think surgery is an option. Just diagnosed 2 weeks ago....any help or info will be appreciated. Thanks!

I was diagnosed with retroperitoneal liposarcoma in April. Only sympton (only..ha!) was swollen legs, distended belly, I looked like I was 9 months pregnant. The local quackers put me through every test they 'felt' were necessary, all the expensive ones that is, this went on for some 5 yrs.+. Finally, this April, 2004, my daughter took me to the ER, the only reason I'm alive is that the doctor on call, was NOT on staff. He found a 'large mass' in my abdomen...too big for the locals to handle and sent me (I left in a gown to tell you how fast it went) to Mayo Clinic in Rochester, MN. They had a team of great guys in went through all the options/CT's, etc. On April 14, they told me it was a large tumor, which was remove don April 15th. Turned out it was a 20lbs tumor...how do ya miss that? I had my right kidney, right ovary and fallopian tube removed, mind you they were fine, just entangled in tumor, it's the spindle cell variety. So I lost 3 good organs, a long hospital stay, by today's standards (2 weeks). I went home, one week later, the same pain that originally took me to the ER, was back. Turns out the tumore was so large it ruptured 'stuff' and I had 'man-sized' hernias...all in a row. Back to Rochester, more surgery. I was off work for 3 months, went back (too soon I fear) and will have my first CT next month, 65% reoccurance, 50% survival rate...I have good days, and some bad. If I feel well, I naturally over do it, pay for it the next day...Chemo is out because there aren't too many organs left, as I have 1 lung, 1 kidney, etc. When it comes back, it's going to be radiation...they left two titanium clips at the site of origin...oh and hey, they had to severe nerves in groin most affected and entangled, leaving me with a boatload of numb where there should be happy thoughts and feelings. I'm so frustrated, my poor husband is 'liposarcomed-out'...I sometimes feel like it's the only thing I think/talk about. Most often, I'm positive, but then I realize I almost died (was within 2 weeks of dying in fact)...all because the locals couldn't find a 20lbs tumor...how is that possible? On the upside, which there aren't too many of...I did loose 55lbs and counting...hellish expensive diet....

pamela55 said:

I was diagnosed with retroperitoneal liposarcoma in April. Only sympton (only..ha!) was swollen legs, distended belly, I looked like I was 9 months pregnant. The local quackers put me through every test they 'felt' were necessary, all the expensive ones that is, this went on for some 5 yrs.+. Finally, this April, 2004, my daughter took me to the ER, the only reason I'm alive is that the doctor on call, was NOT on staff. He found a 'large mass' in my abdomen...too big for the locals to handle and sent me (I left in a gown to tell you how fast it went) to Mayo Clinic in Rochester, MN. They had a team of great guys in went through all the options/CT's, etc. On April 14, they told me it was a large tumor, which was remove don April 15th. Turned out it was a 20lbs tumor...how do ya miss that? I had my right kidney, right ovary and fallopian tube removed, mind you they were fine, just entangled in tumor, it's the spindle cell variety. So I lost 3 good organs, a long hospital stay, by today's standards (2 weeks). I went home, one week later, the same pain that originally took me to the ER, was back. Turns out the tumore was so large it ruptured 'stuff' and I had 'man-sized' hernias...all in a row. Back to Rochester, more surgery. I was off work for 3 months, went back (too soon I fear) and will have my first CT next month, 65% reoccurance, 50% survival rate...I have good days, and some bad. If I feel well, I naturally over do it, pay for it the next day...Chemo is out because there aren't too many organs left, as I have 1 lung, 1 kidney, etc. When it comes back, it's going to be radiation...they left two titanium clips at the site of origin...oh and hey, they had to severe nerves in groin most affected and entangled, leaving me with a boatload of numb where there should be happy thoughts and feelings. I'm so frustrated, my poor husband is 'liposarcomed-out'...I sometimes feel like it's the only thing I think/talk about. Most often, I'm positive, but then I realize I almost died (was within 2 weeks of dying in fact)...all because the locals couldn't find a 20lbs tumor...how is that possible? On the upside, which there aren't too many of...I did loose 55lbs and counting...hellish expensive diet....

Hi I hope you are doing well!
Hi pamela,

I hope all is well with you. I know your post is 5 years old. I hope you beat the same cancer that killed my mom last week. I am still in shock. I don't really have any family so I don't have much support accept from a good friend. Please keep in touch.



God bless Cara

kwatkins said:

keep strong
Hi Cara, I read about your mother and i am so sorry.This Cancer is sooo scary and i hope pamela is alive and well.I have a posting on sarcomas w/ subject age 40 liposarcoma if you want to read mine. But today i was told my dr. in janesviile, wi sent my slides to clevland and they came back saying i have spindle cell sarcoma unclassified. Now im so confused cause uw madison,wi. said it was liposarcoma. now i dont know where to get a second opinion and who is good w/ sarcoma cancers?this **** is crazy. it sounds like it can crop up anywhere anytime. I am 40 and scared to death with not much support at home. God bless you and watch over your mom. take care kelly

2nd opinion
Dr. Christopher Fletcher is a pathologist at Brigham and Women's hospital in Boston, and is one of the best in the world at identifying and diagnosing sarcomas. If there is a way for them to send the slides to him, I'm sure that he could tell you what you have, if anyone can. Stay strong.

survivor 2009 said:

Spindle Cell Sarcoma
I was diagnosed with a high grade Spindle cell Sarcoma in 2008. Dr. Gina D'Amato at Emory Winship Cancer Center in Atlanta treated me. The clinical aspect at Emory is excellent. Give them a call. D'Amato treats only Sarcomas.

treatment options
I have high grade metastatic undifferentiated spindle cell sarcoma. I had a lesion next to my lower left lobe of my lung (both the lesion and lung were removed in 2008). Also I had a small section of liver removed with a metastatic lesion of spindle cell sarcoma in December of 2008. In June of 2009 a new lesion appeared next to my upper left lobe of my lung and in two places in my bones. From July to November I had 6 cycles of Adriamycin and Ifosfamide chemotherapy ending in November. My December PET and CT Scans showed no metabolic activity and the lesions had shrunk somewhat in size. My next scans are near the end of this month, February. In January I started on the Ariad Succeed Clinical Trial. Where / what was the extent of your spindle cell sarcoma and what type of treatment have you and are you undergoing at Emory?

ajay1357 said:

Hi Dcohen,
I am in very similar situation. I had High grade sarcoma on my right shoulder in june 2009. By radiation my docs were able to remove those tissues. Now some 10 days back i diagnosed for High grade sarcoma in my lungs. My doctors told me that operation is not worth and they are suggesting for chemotherapy. It would be gr8 If you update me about your current scenario.

Thanks.

Treatment Option
Hi Ajay1357 and Dcohen,

I am wondering if you are able to let me know about the chemo. My Dad has just been told that no hope to operate on his lungs as it is in both. He had his arm amputated in Feb and there were 2 nodules on the lungs in the short time since the last MRI the CAT scan shows there are now 11 and so he has been told that chemo is the only option. If you could both let me know how you are going it would be so helpful, as we are in limbo at the moment and obviously devastated.

Kind regards
Louise

Mimi Rae said:

Spindle Cell Liposarcoma
Hi Kwatkins,

I am reading your story and it is eerily similar to my husbands. He was diagnosed with what they thought was a low grade well differentiated liposarcoma now they are saying spindle cell, and a large resection of the 18 cm tumor in his thigh. We are going to memorial in NYC. How are you? What treatments, etc? Please contact me. I hope you are doing well.

Spindle Cell Lipssarcoma

Mimi Rae

I read your story. I was diagnosed with Spindle Cell Sarcoma in Oct 07. Had a tumor in my right upper thigh. I was diagnosed by Dr Frank Frassica at John Hopkins and later treated at Portsmouth Naval (I am Navy). I had pre op radiation and post op inpatient chemotherapy both at Portsmouth. The radiation caused the tumor to be 90% dead when removed in Jan of 08. My doctor said there might be a reoccurance in my lung or kidneys, and it did reoccur in 09 in my right lung. I had a lower lobectomy in my right lung and have been fine ever since. Vigilance is the key, educating yourself is the key. Good luck to your husband and yourself.

dcohen said:

treatment options
I have high grade metastatic undifferentiated spindle cell sarcoma. I had a lesion next to my lower left lobe of my lung (both the lesion and lung were removed in 2008). Also I had a small section of liver removed with a metastatic lesion of spindle cell sarcoma in December of 2008. In June of 2009 a new lesion appeared next to my upper left lobe of my lung and in two places in my bones. From July to November I had 6 cycles of Adriamycin and Ifosfamide chemotherapy ending in November. My December PET and CT Scans showed no metabolic activity and the lesions had shrunk somewhat in size. My next scans are near the end of this month, February. In January I started on the Ariad Succeed Clinical Trial. Where / what was the extent of your spindle cell sarcoma and what type of treatment have you and are you undergoing at Emory?

For DCohen and Survivor 2009
Hi,
I recently posted the history of my father-in-laws unexpected outcome with spindle cell sarcoma. The doctors all sounded hopeful and felt radiation was good enough after the operation. Since I am in the medical field I was very wary of the minimally agressive treatment for this type of cancer. Since you have mentioned the Ariad Succeed Clincal Trial I was wondering where that is being given and how you are doing?

SJMAC said:

Spindle Cell Lipssarcoma

Mimi Rae

I read your story. I was diagnosed with Spindle Cell Sarcoma in Oct 07. Had a tumor in my right upper thigh. I was diagnosed by Dr Frank Frassica at John Hopkins and later treated at Portsmouth Naval (I am Navy). I had pre op radiation and post op inpatient chemotherapy both at Portsmouth. The radiation caused the tumor to be 90% dead when removed in Jan of 08. My doctor said there might be a reoccurance in my lung or kidneys, and it did reoccur in 09 in my right lung. I had a lower lobectomy in my right lung and have been fine ever since. Vigilance is the key, educating yourself is the key. Good luck to your husband and yourself.

Myxoid Spindle Cell Sarcoma
I've read everyone's story here, and it looks like I'm in the same boat. I'm lucky in that my cancer is low grade. After being hoarse for 2 years, I went to the ENT and was diagnosed with an "unusual" polyp. When he removed it, they tested it and diagnosed it as a rare myxoid spindle cell sarcoma. It was tangled in my vocal chords.

The first surgery ended up being more of a biopsy since they didn't know what they were dealing with. I have another surgery scheduled this month that will remove a vocal chord and severely alter my voice. Then 6-7 weeks of radiation after that.

I'm going to Duke Medical Center and have the utmost respect and confidence in my doctors there. Dr. Larrier, Dr. Scher, Dr. Pepek, and the rest of the gang.

If you've been diagnosed with sarcoma, I would suggest you seek a sarcoma expert. Your local doctors do not understand how to deal with this type of cancer.

Good luck to everyone here. Hopefully I'll be around long enough to post again after my surgery.

Will

mrcolorado said:

Myxoid Spindle Cell Sarcoma
I've read everyone's story here, and it looks like I'm in the same boat. I'm lucky in that my cancer is low grade. After being hoarse for 2 years, I went to the ENT and was diagnosed with an "unusual" polyp. When he removed it, they tested it and diagnosed it as a rare myxoid spindle cell sarcoma. It was tangled in my vocal chords.

The first surgery ended up being more of a biopsy since they didn't know what they were dealing with. I have another surgery scheduled this month that will remove a vocal chord and severely alter my voice. Then 6-7 weeks of radiation after that.

I'm going to Duke Medical Center and have the utmost respect and confidence in my doctors there. Dr. Larrier, Dr. Scher, Dr. Pepek, and the rest of the gang.

If you've been diagnosed with sarcoma, I would suggest you seek a sarcoma expert. Your local doctors do not understand how to deal with this type of cancer.

Good luck to everyone here. Hopefully I'll be around long enough to post again after my surgery.

Will

asking for treament options spindle cell sarcoma
Best wishes and good luck to everyone here.

My mom was diagnosed with Spindle cell Sarcoma in the upper part of her left lung on Dec 2009 and had a surgery to remove the whloe left part on feb 2010. 3 months after her surgery she had her first CT scan and the result shows that there are new lesions appeared on her right lung and pancreas. The doc suggested for the chemo treament but he is not sure if it works. I am so worry about this agreesive treament and the side effect for my mom's body. She is 50 years old and I dont know whether her body can affort that.

I am here asking for any useful information and suggestions. I will be very greatful if anyone could give me any suggestions or helps.

Thank you again.