Myxofibrosarcoma

3 Posts | Page(s): 1 

Myxofibrosarcoma

by JohnMH on Fri Sep 25, 2009 12:00 AM

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Hi all,

I was diagnosed with Myxo... in June 09, had a tumor removed from my right hip/thigh. Then went for second opinion at Sloan Kettering where they did a radical resection of rt thigh on 9/8/09. Got drainage tubes out yesterday and leg is really swollen now... hope it goes down.

The doctor said he got wide clear margins and did not recommend radiation because of the morbidity issues. He said local recurrence rate is 15%. I just hope I'm not one of the unlucky 15 out of a hundred. 

 I'm not even sure why I'm typing this... a little freaked out I guess.

I've read some hopeful posts on here though! Wishing you all the best!

John

RE: Myxofibrosarcoma

by mycancer2 on Wed Nov 18, 2009 01:57 AM

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Hi John,

My husband is also called John.  He had a myxofibrosarcoma removed from his leg, below the knee in /feb 2008.  Because of vacum left by tumour the wound went very bad so radiation therapy could not commence until June 2008.  After that all well but ;ike you his leg was very swolen and tight.

We were in Germany where they do lymphdrainage for all cancer patients who have had invasive surgery because after surgery lymph fluid collects in that area.

He had lymphdrainage therapy every day for 6 days and then we looked for a therapist when we got back to england.  This therapy is very gentle, does not hurt in any way and after a while you can do this yourself to realease the tension.

You need someone who does the full therapy starting with opening up the lymph nodes around the neck, upper torso stomach and then progressing on to other parts of the body.  I can explain why if you need this info.

there is a mld website (manual lumph drainage) where you can find a list of therapists in your area.

Its not cheap but it is very effective.  My husband is a cyclist so it was very important to heal the leg and muscle tissue - not to mention how uncomfortable the tightness is while the lymph fluid iis not flowing.  GP's don't know about this - even the cancer centre in our local area did not even consider it for surgery in extremities i.e. not breast surgery etc.

 

hope this is helpful

regards

,mycancer2

 

RE: Myxofibrosarcoma

by mycancer2 on Wed Nov 18, 2009 02:03 AM

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Hi John,

 

From the research I have done boosting the immune system after surgery is important.

Eating healthyly obviously but also supplements to help are:

Immune formula complex

Multiphytonutrients

Quercetin

Co Q 10

good health food shops will stock these

If you have to have radiation therapy

pychnogenol

quercetin and

ester c

help with the side effects, nausea, tireedness and boosting the internal system to cope with the therapy.

Myxo is apparently quite rare so stay in touch and keep us posted how it is going

 

regards

mycancer2

 

 

 

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