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Another cancer story: Leiomyosarcoma Another cancer story: Leiomyosarcoma

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Unread 01-15-2009, 10:02 PM
Another cancer story: Leiomyosarcoma

Dx: Leiomyosarcoma
TAH/BSO March 2008
Chemo 6x Gemcitabine & Docetaxel
NED as of September 2008

My story began in January 2008 when I began having pelvic floor pain and difficulty urinating. During a pelvic exam my OB/GYN felt a large mass. I had an ultrasound and intra-vaginal ultrasound right then at his office. He told me that it appeared I had a large fibroid that would need to come out but he wanted an MRI first. After the MRI results he told me he was certain it was a fibroid. We set the surgical date and he told me that it had to be an abdominal surgery because it was so large but we agreed that he'd leave the ovaries unless he saw a problem with them.

Prior to surgery he told me that although only 1% of fibroids were cancerous (I didn't even know that was a possibility), he would have a frozen section tested for cancer while I was on the table.

On March 10, in the final month of my 50th year, I came out of the fog of anesthesia hearing him tell me that he found cancer.

The next day in my hospital room he was able to explain more since I was more coherent. Because of the positive cancer results he removed everything, so I ended up with total abdominal hysterectomy along with removal of both ovaries and fallopian tubes. He also stated that the tumor had encroached on one of the ovaries. Leiomyosarcoma was the word he used, one I'd never heard before. In fact I had him write it down for me so I could remember it and learn to spell it. He warned that it was just a preliminary diagnosis as the tissue was in pathology being tested and it would take several days to get the final report. I remember that he was very surprised by the cancer finding. He hadn't expected it at all.

The odd thing about hearing this was that I didn't experience the shock and disbelief that so many people describe. My theory is that it was because of the narcotics I was on for post-surgical pain. I think there was also a sense that I had the surgery already without the cancer anticipation, so the hard part was over. Or so I thought.

The pathology report came in several days later and I was diagnosed with stage III, high grade leiomyosarcoma and I was referred to a gynecological oncologist who I saw two weeks later. He explained about this rare cancer and that surgery was the primary treatment. He felt my surgery had been thorough and successful. There wasn't much in the medical research literature about the efficacy of chemotherapy post-surgery but it was his recommendation that I have adjuvant chemo. I agreed. So the following week I began chemo.

I had 6 treatments over 6 months as follows:
Day 1 – gemcitabine (also known as Gemzar)
Day 8 – gemcitabine and docetaxel (also known as Taxotere)
Day 9 – Neulasta (a time released version of Neuprogen)
Three weeks later I'd start the cycle again.

My oncologist's practice (a three doctor practice) is affiliated with an academic medical center that has a large cancer center, but this group's offices were off-site and they had so many patients that they had their own chemo suite. The oncology nurses there were wonderful; kind, funny, upbeat, knowledgeable and very efficient. They explained everything they were doing and answered every question. The suite had about 12 chairs that were sometimes filled and sometimes not. I came to treatment on my own but many others had someone with them. Every patient chair (these were the comfy ones) had another chair next to it for visitors. But even on the days when the place was filled everyone was always respectful of others. There was chattering and laughter at times but also quiet times when everyone was focusing on reading or just relaxing.

Food was a highlight at this place. There was always a variety of foods that people brought in and they always had lunch delivered for the patients at 12noon. No one ever went hungry. The suite had a small library of books and portable DVD players for patient use. Several volunteers came in and gave patients manicures if they wanted them. On other days a volunteer would come in a give a demonstration on using scarves. Sometimes the place was so active it was hard to find a little peace to read. Not that I minded. It helped pass the time. My day 1 of treatment was a short day, only a little over an hour. Day 8 was longer, about 3 ˝ hours. A good friend surprised me by stopping in unexpectedly on Day 8. She ended up coming in every Day 8 after that, although it was never planned or discussed. I told her I was fine on my own but she came anyways and it was always a delight. The time flew by.

I know that I've made it all sound like fun but it wasn't. I did have side effects, though not as bad as some people. My hair began to fall out precisely when the nurse told me it would, 2 weeks after my first treatment with Taxotere. I was left with just a few wisps of hair on my head. My eyebrows and eyelashes held fast until about the 4th cycle of chemo when they began to fall out slowly until I was without any facial hair when the chemo ended. That's not a pretty look on anyone. I wore a wig and used an eyebrow pencil but couldn't do anything about the missing eyelashes.

Apparently 25% of patients have bone pain from the Neulasta and I was one of them. That was the most acute issue I had. I ended up taking vicodin for several days every cycle. The rest of the time I took extra strength Tylenol. At one point I even talked with my doctor about stopping the Neulasta but he convinced me to keep at it. It activated the white blood cell production in the bone marrow which was important to fight infections. I stayed healthy; no colds, or infections so it was worth it.

The other effects built up with each cycle so they weren't as noticeable in the beginning. I had a few days of nausea every cycle but the meds they gave worked wonders, especially after I learned to start taking them before I felt the nausea.

About a week after each day 8 chemo my mouth would start to get funky. Fortunately I never had mouth sores and I attribute that to the mouth rinse the nurses instructed me to use regularly (a homemade solution of salt and baking soda in dissolved in water). But every cycle I had a week and then at the end a week and a half when food tasted terrible and had an awful texture feel in my mouth. Eating was very unpleasant. I was hungry but nothing was right. I experimented and each time I thought I found something I could eat, the next time it didn't work. The only thing that I could consistently easily take in was Pepsi, something that I didn't drink prior to chemo. Even water tasted awful. I would drop between 5-10 pounds during that week. I'd put most of it back on once I could eat again; I made up for not eating when the mouth issues corrected, until the next cycle.

Fatigue crept up on me, increasing with each chemo cycle. I had joint and muscle aches. I would get out of breath just walking a short distance, or climbing the stairs at home. I walked very slowly and took short steps. I felt wobbly and unbalanced. My feet swelled and I had to buy larger shoes. I also experienced what has been called chemo brain. I hate that phrase. My memory was shot. My thinking was no longer sharp. I had to write things down so I wouldn't forget. Sometimes the completely wrong word would come out when I talked, other times I just couldn't think of the word at all. Someone would tell me something and the next instant I would have it completely wrong. The mind fuzziness was probably the most frustrating side effect for me.

It was summer and I always take Fridays off during the summer. My chemo was on Thursdays so I had three days after that to recuperate before going back to work on Monday. My boss is a oncology doctor and he understood fully what I was going through. He was very accommodating and told me to take whatever time off that I needed. He called me every day that he didn't see me to check on me, even weekends. But it was important to me to be at work. I had been home for 6 weeks after surgery and I needed to get out of the house. It helped greatly to have my regular routine as much as possible and that included work. I did take some days off but mostly I was there. I wasn't functioning at my best but it worked out. Fortunately I have a desk job so I could get through the day even with the loss of physical stamina.

Throughout this I saw my doc every month. After the last chemo he ordered a set of CT scans. The next week he called to tell me that everything was clear, no sign of disease. It was what I was expecting but it was a huge relief to hear it.

I now see my oncologist and my OB/GYN on an alternating 3 month schedule. As I write this it's only been four months since I've gone into remission and I know that the 5 year survival rates on my disease at stage III are not high. But I feel good and I know that I could very well be part of those low numbers that survive beyond the five year mark. It is a relief to feel normal again and get on with life.

I want to thank Hyster Sisters for this opportunity to share my story.

My very best wishes for good health to everyone.
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Unread 06-17-2010, 02:52 PM
Update (2010) Re: Another cancer story: Leiomyosarcoma

I've had a recurrence of leiomyosarcoma, so I need to update my story.

I was NED as of September 2008 and did well until about October 2009. My symptoms were basically exhaustion and heartpounding on physical exertion. I went to my primary care doc who did a blood test first and found I was severely iron deficient. He started me on iron but I also ended up having three separate blood transfusions over the next three months. I had a blood stool test and was strongly positive so the next step was to figure out where the bleeding was happening in my GI system. I had a colonoscopy, endoscopy, barium X-ray and finally I had the "pill cam". Nothing was evident from these tests but I was getting weaker and sicker. I ended up taking myself to the ED.

At the hospital they did a CT scan and found two tumors on the outside of my colon. I had surgery the next day removing the tumors and part of my colon. The oncology surgeon felt he got everything. Recovery from this surgery was much more of an ordeal than recovery from my TAH/BSO two years prior. I was out of work for 9 weeks.

The pathology report showed that it was a recurrence of LMS. I had a full set of CT scans and nothing else was found. My gyn/onc recommended that I go through chemotherapy again, as adjuvent therapy. I agreed. So I have had one treatment so far of Cisplatin and Ifosfamide. The treatments take place as inpatient in hospital over three days. I get chemo each day in addition to a kidney rescue drug called Mesna. I'm also on IV fluids the entire time. The purpose is to flush my kidneys; so lots of trips to the bathroom.

I feel great. The surgery took care of all the symptoms I was experiencing and once I recovered I feel better than I had in years. I lost weight (from recovery issues), which I needed to do anyway. And so far the only side effect of chemo is about a week of occasional nausea, for which I take compazine. It's very effective.

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