My name is Steve Doo and I have MFH, Malignant Fibrous Histiocytoma. What started out to be a small lump below my left hip, turned into the fight of my life. I’ve been staged at Stage 2b and the grade of my tumor is as of the highest, grade 4. My whole life would change with that one phone call from my general surgeon after he removed the tumor and got the results back. The word “Cancer” brings the strongest individual to your knees. I was in shock, I cried and wondered how would I tell my wife. I left work early that day. For the next few weeks, I contemplated death and how I would face it. All of a sudden, there wasn’t enough time in my life. Before cancer, I thought I had plenty of time.
My journey brought much realization in my life. I found out that doctors are not gods, although some like to think they are. Mistakes were made in the procedure in which I was diagnosed. A needle biopsy was done, but my general surgeon said it was a solid mass and he could not draw a sample from the tumor. He then told me I could leave it and see what develops or he could remove it. Not knowing any better, I told him to remove it before a biopsy or MRI could be done. If I just left it, it might have spread to the point of no return and I wouldn’t be typing this to any of you. What should have been done was another needle biopsy to determine the nature of my tumor. By doing so, he would have found out it was MFH, done a MRI (standard procedure) and known how much to take out on the resection. He didn’t follow that procedure and I ended up with multiple surgeries, multiple skin grafts and many days of suffering needlessly. In the end, I think he finally got it all.
I finally saw an oncologist and he redirected my treatments to try and rid me of my cancer. I got a 2nd opinion from a cancer surgeon that had multiple experiences with MFH, then a 3rd opinion from a cancer case study physician. I got on the Internet (what a wonderful source for information on a rare cancer as MFH), I spoke to other MFH patients and through all the information I gathered, I knew how I wanted to attack my cancer.
I elected to go with 6 cycles of the MAID chemo therapy (chemo being very controversial for MFH) followed by 8 weeks of radiation therapy. The original protocol was 5 weeks of radiation followed by 3 cycles of the MAID chemo treatment, but after speaking with the cancer surgeon that had experience MFH, it was decided that I go with 6 cycles of chemo followed by at least 7 weeks of radiation therapy. The reason for the change are as follows: Radiation is more effective after chemo therapy. The reason being is that the radiation would have a better killing effect if followed by chemotherapy. Chemotherapy is controversial with anybody having MFH. The reason being is that chemotherapy is not effective in killing off MFH cells. However, it is effective in preventing the spread of cancer cells to other parts of the body. Since I am fairly young, 46 yrs at the time of diagnosis, I went with the more aggressive chemo treatments. I was told 3 cycles of chemo doesn’t have a good killing effect. The more I could take, the better off I would be, so I chose 6 cycles.
I found the chemo difficult to take, especially cycles 4 & 5. I also learned that the rate of drip determines how fast you would feel nauseated. I learned the hard way that while taking chemo in the oncologist office, it took 8 hours to drip in the MAID (M for Mesna, A for Adriamicin, I for Ifosfamide, and D for DTIC) drugs and the result was nausea and tossing my cookies at and during treatments. However, I discovered when I took chemo in the hospital, it took 14 hours to drip in and I felt no nausea at all nor did I throw up. I’m certain it was due to constantly being hydrated and the slower rate of drip. As much as I hate hospitals, I would have taken all my chemo treatments in the hospital. My treatments were administered every 3 weeks, 3 consecutive days per cycle. I ended up having a mediport installed in my chest as I couldn’t take any more needle probes for veins after 3 months of chemo. The port will remain in me a full year after my chemo treatments.
I lost weight on my first cycle of chemo, up to 20 lbs, but then I found two food items that I could eat daily that maintained my weight, Pizza and KFC. Yep, as disgusting as that sounds, it worked in maintaining my weight. I never lost weight after my first cycle of chemo. Bottom line, find whatever food works for you and stick with it.
Radiation followed my chemo treatments. They said the first 3 to 4 weeks would be relatively easy. It was, I didn’t feel a thing. Weeks 5 to 8 got progressively worse as far as radiation burns. By the end of my treatments, my surgical area, the area of my resection, was thoroughly burned with blackened skin hanging off my lower hip. Three months after my radiation, I am still recovering from those burns. I was burned so badly that I have been scheduled to see a wound care specialist to try and seal up one remaining area that refuses to heal.
I’ve learned a lot from my cancer experience. In many ways, I had some very positive experiences. Friends and family came out of the woodwork to offer whatever help and comfort they could give me. I got to meet Lance Armstrong at a book signing. I’ve met other MFH patients who have given me advice and strength.
I don’t know the outcome of my cancer. I honestly believe I have a good chance for survival. My doctors feel that way too, but are cautiously optimistic as the nature of MFH is totally unpredictable. I passed my first series of MRIs, Cat scans, x-rays and blood tests. My strength is slowly returning and I am thankful for the time I am on this earth. I’m not a religious man, but there isn’t a day that doesn’t go by that I don’t thank God for another day. I lost my job during my treatments, due to the economy and am currently looking forward to getting back into the workforce and getting back my life. I’m thankful for the second chance at life I’ve been given and there isn’t a day that goes by where I live it to the fullest. My wife is glad to have her husband back and my daughter is glad to have her daddy back.
Every one of us are cancer survivors. For if we just live another day, then we are survivors. I wish the best for all of us in our fight and I thank God for Wendy and Suzanne for starting this Alliance. It has helped me tremendously.