myxofibrosarcoma

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myxofibrosarcoma

by thoweb on Mon May 14, 2012 02:01 PM

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I just wanted to thank you all for your thoughts. I had a mfs removed from half way down right calf near the shin bone 3 years ago. I was misdiagnosed for over a year. I finally had a correct diagnosis followed by 5 weeks radiation and a removal operation once the radiated area healed sufficiently. the tumor was mid/high grade 9cm by 5cm by 2 cm deep. the donor site to fill in the void was taken from my left thigh.

I have felt completely alone in this struggle. I am convinced the medical community know very little about this form of cancer. The only advice i get is to get continued ct's of the lungs every 6 months, of the lungs and abdonmen every year and blood work every 3 months. in between it's just keep your fingers crossed. I have also sought traditional chinese medicine as a preventative measure and am also under the care of an oncologist at the fudan university integrated cancer unit in shanghai. here they combine traditional with western medicine practices and offer traditional meds to strengthen the immune system and get your 'balance' back. It makes sense and is better than keeping one's finger's crossed while waiting for the next check up!

So far I have remained healthy. My ct's have also shown tiny 1 - 2 mm lesions on my lungs but my oncologist suggests that they have probably been there a long time and are not related to the mfs. they have shown no change in 3 years.

sorry for the length of this note. I have not been able to share with other people in the same situation. any response would be appreciated.

RE: myxofibrosarcoma

by Pdmoney on Fri Jun 01, 2012 01:03 AM

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Hello,

I am in the exact same position now.  I just finished 5 weeks of radiation for what was called a pleomorphic sarcoma at first.  I had surgery to remove it on April 26th.  it was on my right knee basically next to my kneecap. I am still recovering at home now.  I just had a follow up with the Orthopedic Oncologist and the pathology report came back with positive margins around the surgery site and they classiffied it as a myxofibrosarcoma.  Right now it looks like I will have to do chemotherapy and take the 4% chance that it will help to prevent any metastisising.  It will be another 2 months probably before I am healed enough to do chemo.  I know exactly what you mean as far as getting the CT scans and crossing my fingers.  That is also my other option.  As the surgeon told me, you gotta swing for teh fences on this one.  What types of eastern medicine are you doing?  I was curious as to what alternative medicine was available.  Good luck with your battlle.  Would love to hear more from you.

RE: myxofibrosarcoma

by thoweb on Sat Jun 02, 2012 04:00 AM

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On Jun 01, 2012 1:03 AM Pdmoney wrote:

Hello,

I am in the exact same position now.  I just finished 5 weeks of radiation for what was called a pleomorphic sarcoma at first.  I had surgery to remove it on April 26th.  it was on my right knee basically next to my kneecap. I am still recovering at home now.  I just had a follow up with the Orthopedic Oncologist and the pathology report came back with positive margins around the surgery site and they classiffied it as a myxofibrosarcoma.  Right now it looks like I will have to do chemotherapy and take the 4% chance that it will help to prevent any metastisising.  It will be another 2 months probably before I am healed enough to do chemo.  I know exactly what you mean as far as getting the CT scans and crossing my fingers.  That is also my other option.  As the surgeon told me, you gotta swing for teh fences on this one.  What types of eastern medicine are you doing?  I was curious as to what alternative medicine was available.  Good luck with your battlle.  Would love to hear more from you.

hi,

the only type traditional chinese medicine i am taking - and the only one recomended - are the herbs. i am not even sure what they all are but i have confidence in the doctor who is a ph d as well as a doctor of traditional medicine AND a western trained oncologist. when possible i see him every 2 - 3 weeks and he monitors my body's function by taking the 3 finger pulses and looking at my tongue and eyes. he then prescribes the herbs which i soak for 45 minutes to an hour and cook for and hour before drinking like a tea. a foul tasting tea i must say! each visit there are minor alterations to the herbal mix. dietary advice has also been suggested.

no one is claiming it is a cure. it is only to enable the body to strengthen and hopefully get back to a balanced state where cancer is not welcome!! 

i did not opt in for the chemo as my oncologist did not encourage going that route. to me the benefits - the 4% chance of improvement you mentioned - seemed to be based on rather thin evidence. not many studies with real conclusive results. the side effects and strength of chemo also put me off it.

keep in touch. it feels good to communicate with someone in a similar situation. best of luck with everything and stay strong.

RE: myxofibrosarcoma

by Pdmoney on Sun Jun 03, 2012 01:00 AM

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Interesting. So it's all stuff from a doctor? Any little bit helps at this point. I dont know what to think at this point. I am just crossing my fingers that everything will be ok.

RE: myxofibrosarcoma

by kmoorerd on Thu Feb 28, 2013 05:35 PM

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My now 52 yo husband had a stage 3 Myxofibrosarcoma removed from his left thigh Sept 2010. He had 5 weeks of radiation first, which is now the most common approach, although I understand Memorial Sloan Kettering in NYC operates first. His entire VMO muscle which had the tumor in it was removed. We have an amazing surgeon in Philadelphia (came from Boston). Very aggressive f/u with a chest CT w/ contrast every 3 mths and an MRI of the leg every 3 mths for 2 years and then he will will go to 6 mth f/u if he continues to do well. He has granulomas in his lungs which they feel are unrelated and unchanging. It is REALLY important to find yourself a SARCOMA CENTER. My husband is not really an alternative therapy guy, but I did get him to take a multivit and some omega2 fish oil and we are working on improving his diet (he hates veggies!!). I am a dietitian, and have personally found accupuncture helpful for pain and more important anxiety. Eating a diet rich in fruits and veggies whole grains and lean proteins can't hurt.Beware of "nutritionists"  (the term emcompasses people with masters degrees as well as people who spend a couple of hundred bucks on a paper from the internet). who promise miracles and want to you to spend tons on supplements. the Sarcoma Alliance can be a good resource for you. They try to collect data since this form of cancer is so rare. For us, the 2 year mark is a really big deal, since if a tumor is going to recur, it often does so in the first 2 years. I will be thinking of you all. please to dont hesitate to contact me if I can be of general assistance.

RE: myxofibrosarcoma

by kmoorerd on Thu Feb 28, 2013 05:42 PM

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Oh yes, we were told chemo was a complete punt...nothing really works. IMHO, if you are considering a chemo run, maybe try to get involved in a trial at a Sarcoma center. I think that something genetic will hold the key in the future.

RE: myxofibrosarcoma

by thoweb on Fri Mar 01, 2013 10:26 AM

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interesting contribution! i'm not american and i am wondering what is the Sarcoma Alliance? any details would be appreciated.

pdmoney, sorry for not seeing your question before. yes all the "stuff" comes from a doctor. hope your chemo went well.

nutrition wise, i too was told not to eat too much meat, particularly beef and lamb, and to increase greens and fruits. this advice wasn't much of a stretch for me as i never was that big a meat eater.

i hope you are all doing well in your struggle. my visits to the doctors were reduced recently to 6 months for blood work and 1 year for follow up ct's. i am very thankful for this as i was beginning to "glow" from all the previous radiation!! i'm pushing 4 years now with no more bad news and i feel healthy, so here's hoping!

RE: myxofibrosarcoma

by bumpy on Thu May 09, 2013 05:00 AM

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I've had two myxofibrosarcomas removed from my left arm during 2010 and 2011. 1st small low grade, 2nd larger high grade. Five different surgeries including muscle removal and taking a large part of my thigh for recontruction. Followed by 6 weeks of radiation. 

Like you guys, have four lung nodules that have remained unchanged so now not worried about them being mets. They were probably more of a concern to me than the possibility of the arm being removed.

Specialist also advised against chemo but from reading different forums, many have gone down the chemo road.

Currently doing 6 monthly SMRI, CT and PET scans in Sydney. Have never had blood work tests for cancer ??

If you google Sarcoma Alliance it will bring up the web. Lots of info and the disscusion board can be interesting. 

I'm 2 years along since treatment finished and doing alright. Still get anxiety (scaniety) each time before tests but so far so good.

All the best

 

 

 

 

 

RE: myxofibrosarcoma

by kmoorerd on Thu May 09, 2013 04:15 PM

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Blessings to you all!! My husband (Stage 3 MFS) has passed 18 months "all clear". Our surgeon, whom we will follow anywhere  in the world should he relocate from PHILLY,PA is really who "drives the bus" regarding his careplan. This may be due in fact to the fact that my husband works in Radiation Therapy,(for his own doc of course!) and has for 32 years, and approved his own radiation plan along with 2 other dosimetrists, 2 physicists and 3 physicians (quite a bit more staff than it takes to get the job done!!!). It was emphasized to us that 24 months is a huge time marker for MFS...80% that are going to recur, will do so locally within the first 2 years. Of course I have chosen to ignore the other 20% as any good wife would do...you know...make those statistics work for you!!!

From an eastern standpoint: go for it! I LOVE that Someone has found an MD that practices eastern and western medicine.  No one know much about anytype of sarcoma. You can GOOGLE the Sarcoma Alliance, and if you really want to help, you can give them permission to get copies from your docs of your initial information and follow up reports as they are trying to form a registry. There are so few MFS patients that they have very little data. I found one site (but "lost it") I will find it again and make sure it is legit when we see the doc again in 3 months, as they were asking for a cheek swab to build a genetic database. Chris would participate if the doc was sure it was a legit organization. There is now 1 drug approved for chemo for MFS, but it is "Last ditch", think it begins with a P?. Chris gets no specific cancer blood work just once a year blood chemistries, prostate, blood count. every 3 months CT scan chest and MRI thigh (tumor site) After 2 more visits 21 months and 24 if all goes well, He goes to every 6 month f/u. The one thing I noticed is that it seems that everyone seems to have "lung nodules that remain unchanged" (Chris does too) does this mean most of the population does and we don't know b/c no one has a chest CT? or is there something about MFS??? Sound like the care "down under" is very much the same. Chris is in touch with dosimetrists there (radiation therapy treatment planners in peoplespeak) as he is just finshing a 3 year term as pres of the prez of their professional organization and they would like the same professional recognition in Australia as in USA, so a number have taken the test in the US. Best to you, you may always email me privately if you need more info, but sound like you are in a great place, and I encourage eastern medicine despite my husband having none of it (the man won't eat a green vegetable, the best I can do is a multivitamin and omega 3 capsules, really!!! the shame of it all). We both agreed before the first visit and still do: the lung CT is fat scarier than the leg: you can always just take the leg if the tumor would be too difficult to remove and have funtion and get a good prosthesis...but once it shows in your lung, scary stuff. But, not gonna happen today, or tomorrow!!

RE: myxofibrosarcoma

by JessieShen on Thu May 30, 2013 02:37 AM

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I'm from China. My father had a grade 2 MFS removed from the left leg near the knee in Nov.2012 at the fudan university integrated cancer unit in shanghai. He had no radiation and chemo treatment because we all consider radiation and chemo are harmful to him. He choose traditional Chinese medicine and something can enhance his immune function,just likeGrifola frandosus,Grifola Frondosa.

He get CT and MRI every two months. He also has two 7mm tubercles on his lungs. He get a PET CT and found this two tubercles are notmalignant.

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