Since April 2000, I have “metachronous” malignant fibrous histiocytoma (MFH)(aka undifferentiated pleomorphic sarcoma - NOS) - a soft-tissue sarcoma (rare cancer). The term - metachronous means “not synchronous; multiple separate occurrences, such as multiple primary cancers developing at intervals”. Metachronous is not the same as metastatic, although some people think so.
All of my 10 MFHs were/are soft-tissue with pathology stating that the tissues varied from spindle-cell to myxoid. Since my MFH journey started in April 2000, I have had presentations in my right shoulder/arm interface, my right thigh/quad muscles, my left thigh resting on the femur bone, my left chest-wall between ribs (2x), my upper stomach wall, my right lung upper-lobe, my right buttock interior, my left paraspinal muscles (2x), my right forearm. I was a right-hander, but now I am a left-hander, but can still drive a car (tested) - the fingers can grip the steering wheel - other times, I have to hold a therapy ball to keep my fingers "extendable", including while sleeping.
Most of these were surgically removed, and one was killed by radio-frequency ablation. Most occurrences had adjuvant radiation, including IMRT, Novalis stereo-tactic radiotherapy, and brachytherapy .
My only neoadjuvant radiation - to my right forearm severely ruined sub-surface tissue, blood vessels, tendons and nerves, - that the surgery “sew-up” was extremely difficult, and reconstructive surgery had to done 3 months later. The radiotherapy only reduced the tumor size from 8.2 cm. to 7.8 cm. I will never again have neoadjuvant radiotherapy.
I had Novalis stereo-tactic radiotherapy that is reducing the existing MFHs in my left armpit area and the one in the upper lobe of my right lung.
Except for the Novalis treatment, all adjuvant radiation burned the area severely that I have had several instances for burn therapy.
I attribute my “long survival” to religious periodic CT scans (with MRIs to suspicious areas) and rapid treatment at a “somewhat” sarcoma-knowledgible facility, mostly at the Arizona Cancer Center/UMC, Tucson, AZ. We now have a Sarcoma Support Group there (started by me), which meets quarterly. And, through my “insistance” - we have a dedicated multidisciplinary sarcoma clinic operating weekly there.
My only chemo “trip” was neoadjuvant to see if it can kill the MFH in my left thigh before surgery. I had 2 ½ months of Adriamycin (doxorubicin), continually via the P.I.C.C. procedure. Upon surgical pathology, the MFH had < 20% necrosis. So, no more chemo for me - as recommended by the sarcoma ortho surgeon that did 3 surgeries on me.
I also had molecular profiling done on a tissue sample taken from my last back surgery. The “most-relevant” agent is Gemzar (gemcitabine). I looked up the side/after effects and they are very severe. So, I am not opting for this - or any agent! Not at my age - 78 .
I had a 2 cm. presumably MFH “bump” on top of my head - only in the surface skin, that was removed in a 1-hour out-patient procedure on Dec. 23, 2008, and all went well. The doc got good margins, but had to install staples, temporarily - since the surface skin had to be “re-connected”. I got the staples removed on Jan. 12, 2009.. The surgical frozen section was taken; this was done - since the earlier fnabx was inconclusive. The surgery pathology was analysed, and only 1 out of 5 sections was a malignant analysis - as DermatoFibroSarcoma Protuberans (DFSP). This is the first occurrence of DFSP since my sarcoma journey started in 2000. The staples were all removed Jan. 12, 2009 and the site is healing fine .
And, for the past 6 + months, I am experiencing daily pain from the late-effect radiation-caused severe fibrosis of my left paraspinal muscles (thoracic and upper lumbar sections) and neuropathy damages to the various nerves in those areas. I am employing pain management therapy, at the clinic - started Dec. 19, 2008. At the Dec. 19th visit to the pain-management clinic, the doc gave me nortryptoline anti-depressant med - to sleep better. On Jan. 22, 2009, he did an epidural-corticosteroid injection on my back left paraspinal thoracic muscles, T-3 to T-12. The upper lumbar section L-1 to L-3 - was injected Feb. 5, 2009. The shots just gave me minimal pain relief for 2-3 days. On Mar. 3rd, when the doc described 2 trials by Medtronic (1 - for catheter-delivered medicine, and 2 - for implanted nerve-stimulation), I declined to enter these trials. I will continue my pain medications and exercise/hydrotherapy. I am now seeking another pain-management clinic locally, and a lymphadema clinic for the “problem” in my right leg (also due to the late-effects of radiation ~ 3 years ago).
What a life……….