My husband was diagnosed with a high grade lm. in his left hip area 18 months ago. He had it resected which resulted in the removal of his left gluteous maximus and several surrounding muscles. Fortunately, his sciatic nerve was not involved which would have resulted in the amputation of his left leg. He had a double margin removed and reconstructive surgery to move some remaining muscles around so he would be able to walk. About 7 days after the surgery he was isolated while he received internal radiation to the tumor bed for 48 hours.
He surprised everyone including the surgeon and physical therapist because he was able to regain his ability to walk MUCH faster than anyone had thought he possibly could. He then underwent 36 external radiation treatments. He felt fine and was getting his life back to as normal a condition as possible, although he'd been declared permanently disabled and had to go on Social Security at 57.
At his first 3 month ct-scan we were horrified to be informed that the lm. had spread to both of his lungs. The oncologist who told us this had not even seen the scans as he was covering for our vacationing doctor. He calmly told us my husband was going to die within a year to 18 months and that he was very sorry, but there was nothing to be done. We asked about chemo and were told, "Look, you're feeling good right now and the chemo would make you sick. It won't help anyway so go home and get your things in order." We were nearly on our knees at this point.
Since we live 40 minutes outside of Boston we made an appointment at Dana Farber where there is a sarcoma clinic. We had to wait a month for our appointment. Needless to say, we were in agony for the entire month.
When we finally met with Dr. Jeff Morgan, an associate of Dr. George Dimitri, his first response to our horrible prognosis was "Who told you THAT?" He went on to assure us that there were any things they could do to treat my husband. I asked if that meant my husband would not be dead in a year and he thought that would be "highly unlikely". We were on cloud nine!
We made arrangements to have his chemo administered at Commonwealth Hematology-Oncology in Worcester as it was more convenient for us. Dr. Morgan worked closely with Dr. Susan Donohue as the Chemo program began. It lasted for 11 rounds. My husband was given a combination of Gemzar and Taxotere. The team was very specific about giving the infusions more slowly than had been done in the past because that tended to be more effective at killing the cells. At the half way point my husband's ct-scan showed "substantial shrinkage " in all 6 tumors and the "poppy-seed" scatter of tiny tumors had been completely erradicated. It was time for more tears, even the nurse practitioner cried for joy with us.
At the end of the chemo treatments only two of the tumors appeared active. We went back to Boston and met with Dr. David Sugerbaker, Chief of Thoracic Surgery at Brigham and Women's Hospital. This is basically the surgigal hospital for DF patients. He was very confident that he could get all the remaining tumors out, but would have to split my husband's sternum, spread his lungs and "remove anything that even felt suspicious".
On May 13 the surgery was performed and completed in 90 minutes! Dr. S. came down to speak with my son and me. He felt my husband's prognosis was very good and that he seemed to be one of about 10% of leiomeiosarcoma patients where the mets had gone only to the lungs. He said the key was in getting it all and that he had done so. After more tears and a big hug for Dr. Sugerbaker, he went on to say that with the possibility of a repeat appearance in 2-3 years, which he would also remove, my husband had a better than 50% chance of survival.
Two weeks later the path report showed that there had only been two active lm's and the other spots had been reduced to scar tissue and granulomas. The surgeon said that bumped my husband's chances for survival up even higher.
We will go back next week for our 2 month's followup. My husband continues to feel better every day as his energy comes back and his wounds are healing nicely. He is still very tired which is no surprise considering the ordeal and emotional roller-coaster he's been on for the past 19 months.
He will have his first post-op ct-scan on July 30. Naturally we are anxious and probably will be every time he has one for the rest of his life. The main thing is that we have hope now and feel like we just may be able to grow old together and see our grandchildren.
Please make sure to go to a cancer center that specializes in sarcomas and always keep asking questions, searching, getting second opinions. If we hadn't, we'd be waiting for my husband to die in a month. What a difference a year has made!
I should mention that we were on every prayer list in every church in our little New England Community. We also had a Chinese herbal doctor who had her PHD in Cancer Biology from Harvard. She custom blended vitamins and herbs to correspond to whatever stage of treatment my husband was at throughout the fall and winter. He is now on maintenance vitamins and
antioxidants.
The other factor which was HUGE, in our opinion, was our Reiki Practitioner who served as our friend and mentor throughout the past year.She is a cancer survivor as well. She'd been given 3 month's to live and is now seven years cancer-free.
In early June on a beautiful Friday evening my son and I watched with a smile and tears in our eyes as my husband walked in the "Survivors' Lap" in his first Relay for Life. He was preceeded by Worcester's Firemen's Kiltie Band. All I could think was , "There goes our very own "Braveheart".
Never give up there IS hope you've just got to go through hell's fire to do this, but it can be done. God bless you and good luck.
Mary G.