myxofibrosarcoma (myxoid MFH)

Wow, many thanks for the NCCN webpage. It looks very informative.  I'll be spending time reading it today. Your support is greatly appreciated.

qksand 

Completed the pre-operative exams and interviews. I will go into resection plus reconstructive plastic surgery next Tuesday. A chunk of my hip (approximately 9cmX13cm oblong shape and 2-3cm deep) will be cut out. That will probably take 1-2 hrs. I will have an immediate weight loss of 1+ pound. How about that! The plastic reconstruction turns out to be complicated and interesting to learn. Basically it is a cut and paste followed by sew operations. It will take 3-4 hrs. I will stay in the hospital for 5-7 days. For the first few days, I will be given pain killer thru PCA (patient controlled analghsia). I think I will choose epidural PCA. I believe the risk will be very low at this large national cancer center with experienced anesthesiologists and good facilities.  The side effect does worry me is the urine retention because I already have that problem with my BPH. Hopefullly, it will be minimum. Assuming I heal sufficiently from the surgical wound in 4-6 weeks, I will start on a 5-6 weeks long Radiation Treatment (RT). The radiation oncologist said that for my sarcoma there is a 90% cure rate. Witchdoctor told me about the possibility of cure and now from this oncologist. This gives me a big uplift. Hope it happens. However, there are other doctors having different opinions. So, I just cross my fingers, take whatever happens and hope for the best.

Good luck...

I too had my doubts when I was diagnosed April '96 with MFH Sarcoma.  I was given radiation for 5 weeks and then after the site healed I had surgery to remove the tumor and resection the muscle in my upper thigh.  I go fo chest x-rays every 3 months and am happy to report that at this writing I am still in remission.  It is really difficult to find information on sarcoma, it's such a rare cancer that there just isn't as much info as with more common cancers.  Sometimes being unique is not all it's cracked up to be, is it?  Good luck with your surgery and I pray that your outcome will be as positive as mine. 

On 5/5/2007 Qksand wrote:

Completed the pre-operative exams and interviews. I will go into resection plus reconstructive plastic surgery next Tuesday. A chunk of my hip (approximately 9cmX13cm oblong shape and 2-3cm deep) will be cut out. That will probably take 1-2 hrs. I will have an immediate weight loss of 1+ pound. How about that! The plastic reconstruction turns out to be complicated and interesting to learn. Basically it is a cut and paste followed by sew operations. It will take 3-4 hrs. I will stay in the hospital for 5-7 days. For the first few days, I will be given pain killer thru PCA (patient controlled analghsia). I think I will choose epidural PCA. I believe the risk will be very low at this large national cancer center with experienced anesthesiologists and good facilities.  The side effect does worry me is the urine retention because I already have that problem with my BPH. Hopefullly, it will be minimum. Assuming I heal sufficiently from the surgical wound in 4-6 weeks, I will start on a 5-6 weeks long Radiation Treatment (RT). The radiation oncologist said that for my sarcoma there is a 90% cure rate. Witchdoctor told me about the possibility of cure and now from this oncologist. This gives me a big uplift. Hope it happens. However, there are other doctors having different opinions. So, I just cross my fingers, take whatever happens and hope for the best.

 

   

Hi Chris54,

My mother has been dx a myxofibrosarcoma.After the first operation it seems they do not have much clue how to cure it. I am looking for an hospital specialized in the cure of such form of cancer. Please can you advise me.

Thanks a lot

Best Regards,

Riccardo  

Dear Sir/Madam,

My mother is experiencing the same as you. Myxofibrosarcoma. after resection doctors seem not having has clue on cure. I need to find an hospital with specific competence on this form of cancer. Can you help me?

Thanks

Best Regards,

Riccardo

Dear Chris54

Thanks a lot. My best wishes to you.

Riccardo

On 6/11/2007 Chris54 wrote:

I saw Dr. Jeffrey Kneisl in Charlotte, N.C. 

Adult soft tissue sarcomas are primarily treated with Surgery and Radiation.  With gross total resection (limb sparing) and radiation a 90 percent local control can be obtained.  The cure rate is less though and depends on variables the most important being Tumor Grade.

Chemo has been a mixed bag, meaning incosistent results ,but it is usually added in Grade 3 tumors in the hope of reducing distant mets and in people who have systemic disease.  Children with sarcomas respond better to chemo for some reason.

Soft tissue sarcoma is also one of the tumors where if the tumor comes back after a couple or more years in the liver or lung with a solitary nodule then aggressive treatment (resection +- radiation) can result in prolonged survival and even cure.

On 6/11/2007 Riccardo wrote:

Dear Sir/Madam,

My mother is experiencing the same as you. Myxofibrosarcoma. after resection doctors seem not having has clue on cure. I need to find an hospital with specific competence on this form of cancer. Can you help me?

Thanks

Best Regards,

Riccardo

I am sorry to hear about your mother's situation.

I had my resection and is now ready for radiation treatment which will last for 6 weeks. After that they will monitor me with MRI, CT, blood samples, X-ray ... periodically. There is no other treatment planned.

There are several very reputable cancer centers for sarcoma, such as  Sloan-Kettering in NY, MD Anderson in TX, ...... I chose MD Anderson because I live in TX.

My understanding of sarcoma is that chemo therapy effectiveness is controversial and I don't think is accepted as standard proceducre. Of course it is still being researched by many medical teams.  

In the meantime, I am pursuing traditional Chinese medicine and acupuncture hope to find some leads there.

I hope this is of some help to you.

Best wishes,

qksand 

Chris54, thanks for your message. It felt so good to hear successes. I keep my finger crossed and hope to post similar message like yours in 10 more years.

Best wishes,

qksand