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Patient to Patient

We hope these stories provide some insight & encouragement to patients considering their treatment options. The stories reflect the fact that no two patients or their experiences are exactly alike, and you may have a completely different outcome with the same treatments.   We offer these accounts, not as medical advice, but as personal examples of survival & options to discuss with your physician. If you would like to share your personal experiences, please email us at contact@LMSdr.org.

A TYPICAL STORY ABOUT LMS

LUNG METASTASIS TREATMENTS

 

Laser Surgery for Multiple Lung Tumors in Germany
(Not yet approved in United States)
By Kim O-C
April 2006

Lung tumors are a common occurrence in metastatic Sarcoma. Unfortunately, once more than five or six active tumors inhabit a single lung we are deemed inoperable here in the USA. I am writing today to tell you not to give up hope. We do have an option. Laser Lung Metastasectomy for multiple tumors is performed in Coswig, Germany by Prof. Axel Rolle M.D. This procedure is extending lives everyday. Dr. Rolle determines candidacy and number of tumors to be resected. I personally had 269 bilateral tumors removed in 2005. Laser resection has been standard procedure in Europe for more than 10 years with Dr. Rolle having performed more than 1000 metastasectomies himself. It is performed via open thoracotomy and is a major surgery. This 1318 laser wavelength is not yet approved in America (not FDA approved) so medical insurance will not cover expenses.

PLEASE NOTE that Dr. Drews has taken over for Rolle who retired.
Dr. Drews
Fachkrankenhaus Coswig GmbH
Neucoswigerstr. 21
01640 Coswig
Germany Phone: 0049 (0)3523 – 65 102
Fax: 0049 (0)3523 – 65 103
Email:  Drews@fachkrankenhaus-coswig.de

 


 

Thoracotomy & VATS Surgery at University of California, San Francisco
By Suzanne K.
April 2006

A thoracotomy vs. VATS (Video Assisted Thoracic Surgery); I’ve had both, as a matter of fact, I’ve even had both at the same time. My surgeons performed a thoracotomy on my left lung and a VATS on my right lung, in the same surgery (April 06). They removed a total of 9 tumors. I had previously had a VATS procedure on my left lung to remove just one lung tumor about 16 months before (Dec 04). Here are my comments on these two procedures.

First of all, I healed much faster from my VATS surgery. Both of my VATS were a piece of cake as far as recovery. With the first VATS, I had two small incisions, each about 2 inches long. When I left the hospital I was given pain medicine which I only needed for one day, then I took Ibuprophen the 2nd day and nothing by the third day. From there the episode was basically ended. The thoracotomy however, took a bit more pain medicine and a bit longer to heal. My thoracotomy involved an incision through my back which has left a scar about 6 or 7 inches long. However, the good news is that within 4 weeks after my thoracotomy/VATS double procedure, I was probably 90% back to my old self. I could raise my arms just as high as before and could move without any pain. There was some minor tightness around my chest for a while which I later determined must be part of the healing process. After 6 weeks however the tightness was almost totally gone.

One thing I did notice after both surgeries, the first time VATS and then the thoracotomy/VATS was that I would have these little episodes of what I call an occasional “gasp.” With no prior warning, I would just suddenly do a little “gasp.” The gasp slowly faded in time and went away after 6 weeks. My surgeons were Drs. David Jablons and Michael Mann. They work at UCSF Comprehensive Cancer Center and UCSF Moffitt Hospital in San Francisco, California. The care I received from all the nurses and staff at UCSF was excellent. I would not hesitate to trust either of these two brilliant surgeons with my life again.


 

Radio Frequency Ablation (RFA) of Lung Mets
By Lora B.
April 2006

The following is my experience with lung RFA’s. It is by far the easiest type of lung surgery I have ever had. I had three prior thoracotomies and I am no longer a candidate for this type of surgery again. My primary LMS tumor was retroperitoneal. Fortunately, my lung mets are growing at a very slow rate. RFA is minimally invasive and can be used as maintenance as the tumors grow. I have had two RFA treatments so far and will have a third when my next tumor reaches approximately 3 cm. My RFA is performed by Dr. Hansen in Portland, Oregon. I check in the morning of the surgery. I am given general anesthesia and put into a CT scanner to accurately find the tumor. A probe is inserted through my back and directly into the tumor. Once inside the tumor, tines are extended from the probe which grab hold of the tumor. Heat generated through the probe essentially cooks tumor, cutting off its blood supply. Over time, the tumor dies, collapses on itself, and the body discards it.

After the procedure, I am kept in the hospital overnight for observation. If the lung were to collapse, they want to be able to take care of it immediately. The doctor writes a prescription for a weeks worth of pain medication, oxycodone, but I’ve not needed more than two day’s worth. There’s been no other problems other than a slight bit of neuropathy that resolved itself within about a month.


 

Cyberknife for Lung Mets
By Suzanne K.
October 2007

In 2006 I lost a dear friend, Marlene Parker, who had cyberknife performed at the same time I was having RFA. It was later determined that it wasn’t the cyberknife that actually caused her death, but the fact that she was taking Sutent which did not allow her body to heal after the cyberknife treatment. In 2007 I decided to try cyberknife on a met that had grown quickly and was in an area where surgery would not be able to rid me of the met. However, I made sure I was not taking any antiangiogenic treatment right before, during or after the cyberknife in order to avoid the same fate as Marlene.

I live in Oklahoma and there is cyberknife in my state. The local cyberknife people looked over my latest scans and it took them two weeks to get back to me to tell me they couldn’t do the job because the tumor was too dangerously situated. I immediately contacted my doctors at UCSF and FedX’d them my scans. The next day UCSF personnel contact me and said to fly out immediately. Within a week I was in the hospital at UCSF (out patient) having gold fiducials placed into the tumor, and a week later I went for about 2 hours a day for 5 days to have cyberknife performed. It was very easy. You just lay and listen to music while the machine goes around you keeping its ‘eye’ on the gold fiducials which have been placed into the tumor. That was it! My family and I actually made a 2 week vacation out of the event and would go each day for a new adventure after my cyberknife treatment.

It has been over 10 weeks since I had cyberknife. I had a scan after the 6th week, and the tumor that was cyberknifed was shrinking as it was suppose to do. So far I have had absolutely zero problems from the cyberknife treatment. So, unless something unforseen occurs in the future…. I can recommend cyberknife if done by the right people who know what they are doing. UCSF is definitely one of those places I would recommend.


TARGETED CHEMOTHERAPY

 

ET-743 (or Yondelis/Trabectedin)
By Dawn P.
May 2006

ET-743 (or Yondelis/Trabectedin) is a novel chemotherapeutic agent currently in Phase II clinical trials. It is a marine-derived anti-tumor agent isolated from a sea squirt named Ecteinascidia turbinate. Its mechanism of action is also unique whereby it is the only chemo agent that binds to the minor groove of the DNA causing many different biochemical effects. It is being co-developed by PharmaMar and Ortho Biotech Products (a division of Johnson & Johnson). ET-743 was granted Orphan Drug Designation in the indication of Soft Tissue Sarcoma in October 2004. ET-743 is given as a 24-hour IV infusion through a port every 3 weeks. The dose currently is 1.5mg/m2.

I have been enrolled in the ET-743 clinical trial at Dana Farber Cancer Institute since January 2005 entitled “A randomized, Multi-center, Open-label Study of Yondelis, ET-743 administered by two different schedules (weekly for 3 of 4 weeks vs. q3weeks) in subjects with locally advanced or metastatic liposarcoma or leiomyosarcoma following treatment with an anthracycline and ifosfamide”. My experience with ET-743 has been a positive one. I will provide you with some information and my experiences on this agent.

Side Effects: ET-743 does not cause hair loss or mouth sores. I do experience moderate nausea, which is controlled with a combination of anti-emetics (Emend and Kytril) and a tapering dose of steroids over 5 days (dexamethasone). I do experience some fatigue the week of my infusion but by the weekend (Day 6) I am back to my normal self. ET-743, as all other chemo agents, does lower both your red and white blood cell counts causing anemia and neutropenia, increasing your risk of infection. My counts tend to drop to their lowest point rather late, at around Days 18-21. As this is a 3-week regimen, I can take Neulasta which stimulates the growth of white blood cells and it works well.

Outpatient Dosing: ET-743 is given as a continuous 24-hour IV infusion. I get hooked up to my infusion typically on a Monday and drive back to New Jersey (my home) where I get disconnected from the pump locally. The pump is rather quiet and is contained in a simple bag that you wear for the 24 hours. I have been to my son’s 1st grade classroom attached to the pump with a big sweater on and the children did not notice a thing.

Results: ET-743 is known as a stabilizer, not a shrinker of tumors. It has kept my lung and liver tumors relatively stable over the past year and a half and I have had no new lesions appear. I say “relatively” as my liver lesions did begin to grown slowly after about 9 months on treatment. My liver surgeon at MSKCC was consulted and it was decided that I undergo hepatic arterial embolization to help control the liver tumors.

Acupuncture for treating chemo-induced Nausea: As I am prone to nausea (severe morning sickness with both children, post-operative nausea and vomiting, motion sickness), I am more sensitive to the gastrointestinal effects of all chemotherapy including ET-743. Recently, it was suggested to me by my liver surgeon to try acupuncture. MSKCC has an Integrative Medicine facility (phone 212-639-4700) which is a relaxation oasis in the middle of the hustle and bustle of NYC. It has been a wonderful experience. I go weekly, even during the week of my chemo. I can honestly say that it has decreased both the intensity and duration of my nausea, as well as increased my energy the week of chemo.


 

CYTOTOXIC CHEMOTHERAPY

 

AIM (Adriamycin + Ifex + Mesna) Chemotherapy as an Outpatient
By Suzanne K.
April 2006

Before I took AIM (January ’04) I knew that almost everyone takes it in the hospital over a 4 day period. I wanted to be a pioneer and take AIM outside the hospital. I had several reasons, the first being I wanted to be home with my family because I felt that was the best atmosphere for me, and second because I worried that the nurses would probably pump me full of medicines I didn’t need while at the hospital. I hate it when a nurse comes in to give you medicine for pain, or for nausea, or something else because its written on her chart…. and you are feeling fine… but its on the precautionary schedule… just in case.

Anyhow, to make a long story short. I went to my hometown clinic and took AIM daily and went home each evening with two backpacks and two pumps going. The next morning I’d be at the clinic again. But here was the big difference for me. At home I would make myself get on my treadmill and walk (slowly for sure) every night for a while, and I would drink tons of water, and even though the doctor had given me a massive number of prescriptions for use during the week, the only things I took from all of this was my iron pill in the morning and Ambien at night to help me get to sleep. But I had pills for everything imaginable which they would have given me daily in the hospital had I been there. I had no major lethargy, no nausea, and very few problems. I truly believe it was because I didn’t fill myself with all the unnecessary medicines, and because I kept my body up and moving around as close to normal as possible. And water…. I highly recommend drinking lots and lots of purified water… such as Dasani… purified, not spring water. I did not eat fresh fruits or vegetables unless well cooked, nothing raw. I didn’t want to take any chances on bacteria since my immune system was so compromised. My taste buds died and I started losing some weight, but I forced myself to eat healthy food. Each morning when I awoke, I had a big spoonful of peanut butter for protein. Tostitos hot sauce and chips tasted good to me.

I lost my hair about the 3rd round of chemo. I hadn’t realized but you also lose you eyelashes and eyebrows. I tried to figure out where to draw on an eyebrow, but there was nothing to show me where my eyebrows had been. I have sworn the next time I have to take a chemo I will get a magic marker and draw my eyebrows on before I lose them all. AIM is a hard chemo, I won’t deny that. I was just one of the lucky ones who seemed to get through it ok. I did have a blood transfusion half way through because my counts were so low. However, AIM is do-able.


 

Gem/Tax
By Suzie S.
July 2006

Let me start with the good news: I got a year and a half of complete remission from Gemzar and Taxotere. This is considered an excellent response for someone with leiomyosarcoma.
I did eight rounds of Gemzar+Taxotere and then five infusions of Gemzar by itself. The generic names are gemcitabine and docetaxel. Some people refer to it by its initials: G/T or g/d.
I had surgery in July 2002 to remove a 12 cm, bleeding, necrotic (dying) leiomyosarcoma that appeared to be confined to my vagina. I had my ovaries, uterus and most of my vagina removed. Unfortunately, the pathology report indicated that the margins were not clear next to my bladder. That meant there was a good chance that a few stray LMS cells had been left in my body. Because of this, I had six weeks of pelvic radiation. Having had radiation can worsen a person’s side effects from chemo.

In January 2003, a CT scan found an 8 mm nodule in my right lung. I had not had any symptoms, nor did the nodule ever show up on chest X-rays. The nodule was not biopsied, but Dr. M. Andrew Burgess was sure it was leiomyosarcoma. Now retired, he had about 30 years’ experience and a clinical interest in LMS. He worked in the Sarcoma Center at M.D. Anderson Cancer Center in Houston.
He consulted with my gynecologic oncologist, Alan Munoz, back home in Dallas. They decided on a protocol developed by Dr. Martee Hensley, who researches uterine leiomyosarcoma at Memorial Sloan-Kettering Cancer Center in New York. She had published a groundbreaking study on Gem/Tax in the Journal of Clinical Oncology in 2002. In a letter to Dr. Munoz, Dr. Burgess said the “significant effectiveness” of Gem/Tax provided “a very welcome alternative to Adriamycin/Ifosfamide.” If your insurance won’t pay for the chemo, your doctor can submit published research such as Dr. Hensley’s. If you have a low income, try the Lilly Oncology Hotline at 1-888-443-6927. Make sure your doctor’s office is using the correct billing code. For example, Medicare has different codes for “soft-tissue sarcoma” than for “uterine cancer.”
I had the protocol that Dr. Hensley described: Gemzar 1g/m(squared, but I don’t know how to insert that symbol) on Day 1 and Day 8. On Day 8, I also had Taxotere at 100 mg/m(squared). On Day 9, I got a shot of Neulasta to stimulate my white blood cells. This cycle was repeated every 21 days. The protocol calls for Gemzar to be infused over 90 minutes. The slower the Gemzar is given, the harsher it is on the body – and the cancer. Dr. Munoz didn’t think I could tolerate that, and so, he prescribed a 30-minute rate. When my metastasis shrunk, Dr. Burgess said, “I can’t argue with success.”
When leiomyosarcoma spreads far from its original site, doctors assume that cancer cells could be anywhere in your body. Dr. Burgess recommended chemo, instead of surgery, in hopes of killing stray cells, in addition to the lung metastasis. I had CT scans every two to three months to see if the chemo was shrinking the met. A local radiologist compared the wrong set of scans and thought the chemo wasn’t working. I prepared for lung surgery, only to have Dr. Burgess discover the error. From then on, I had my scans done at M.D. Anderson.

After 4 rounds of Gem/Tax, a CT scan showed that my metastasis had shrunk. In June, I started another 4 rounds. After that, I had only a speck left. Dr. Burgess suggested I do Gemzar alone. I had it Day 1, Day 8 and Day 15. Then I skipped a week and started over. I started in October, and by early December, my lung was clear and I stopped the chemo. Gemzar usually causes fewer problems than Taxotere. Unfortunately, studies have since found that the combination of Gem/Tax tends to be more effective for LMS patients than Gemzar by itself. I had minor surgery to put a mediport in my chest. I had “twilight sleep,” instead of general anesthesia. The port was just under the skin. On me, it could be seen as a bump, but for some people, it’s not visible. The port never gave me trouble except at the end, when the area was inflamed. My doctor immediately ordered a test to see if I had a blood clot. I didn’t, but he recommended I get the port removed. It’s possible that the port leaked some chemo into my chest, causing the inflammation.
The port didn’t stop me from doing any activities, such as showering or tossing and turning in bed. It saved my veins from many needle sticks. Oncology nurses could always access my port, but some other nurses couldn’t get any blood out of it. So, I still ended up having a lot of blood draws directly from my veins, not the port. I had blood draws every week to check my red and white blood cells and my platelets. When people talk about “tolerating” chemo, they usually are referring to their “blood counts.” If your counts are too low, your doctor may delay your next infusion or take you off chemo entirely. My infusions were delayed several times because of this.

In general, I didn’t have too much trouble with platelets, which help the blood clot. Nevertheless, I took extra care not to cut or bruise myself.
I’m a vegetarian, but normally I have no problem with my red blood cells. During chemo, however, I had to get shots of Procrit to boost my red blood cells. This is common. Despite the Procrit, my red-blood count fell pretty low after about four rounds of chemo. I felt exhausted and short of breath, and my doctor told me to go to the emergency room. After tests to rule out other problems, I got a transfusion of two pints of blood, and I stayed in the hospital a few days. Sometimes my white-blood count tanked, but the Neulasta always brought it up. Occasionally, my count skyrocketed after a shot. Check to see if and how your insurance will pay for Neulasta and Procrit. I got mine in my doctor’s office, and ended up paying much more than if I had gotten the drugs at a pharmacy. These drugs are liquid, and they are given as a shot. I got mine in my arm at home. Luckily, my sister had experience giving shots. I had my first infusion of Gemzar on the day I got the mediport. A couple of days later, I noticed wide stripes of pinkish red, starting from my chest to my thighs, front and back. In another day or two, I was covered with an itchy rash. Aveeno anti-itch lotion helped. My doctor decided I was allergic to Gemzar. From then on, I got 50 mg. of Benadryl injected into my IV before I got the Gemzar. The Benadryl made me sleepy, and I had to have someone drive me home. Even with the Benadryl, my face got red sometimes, especially on one side. Others have reported rashes from Gemzar and/or Taxotere. I was prescribed Decadron (dexamethasone), a steroid, for the day before I received Taxotere, on the day of, and on the day after. Decadron is used to prevent serious respiratory problems. But it also can make you feel jittery. I had a hard time sleeping on the days that I took it. I would have my worst side effects a couple of days after my infusion. I preferred to get infusions on a Monday or Friday. If I got them midweek, I ran the risk of feeling my worst on the weekend, when the doctor’s office was closed. I could call the doctor’s answering service and get help, but it was still easier to call during office hours. People experience chemo differently. I had many side effects, but in general, it was not nearly as bad as I had imagined. I had an easier time because I wasn’t working, although I’ve known others who worked while on Gem/Tax. In a year of chemo, I don’t think there were more than 3 days when I vomited. Patients are encouraged to take an anti-nausea drug, such as Zofran, on a regular schedule, before they feel sick. I often didn’t take Zofran until I felt sick, and it still worked for me – most of the time.

Often, I had little appetite, or an odd taste in my mouth, but when I took Zofran, I’d get hungry. Like many people, I gained weight while on chemo. I felt spacey sometimes. At times, I felt so weak that, after taking a shower, I would fall into bed, without drying off. I had some edema, or swelling, in my ankles from fluid retention. I elevated my feet when possible. Some people joke about “the Gemzar flu.” Some days, I had headaches and body aches, especially in my hips and legs. (Three years later, I still have pain in my hips from time to time.) I was either hot or cold, but rarely felt “just right.” (My internal thermostat still doesn’t work too well.) It was common to have chills and fever a couple of nights a week. During one stretch, it seemed like I ran a fever every night for weeks. I often had fevers around 101 degrees F. If you have fever, a doctor should check for infection or other problems. I had urinalyses, chest X-rays, blood cultures, tests of my port, etc. No problem was ever discovered, other than the chemo. A wet, cold washcloth on the back of my neck helped, and I tried to drink plenty of water to reduce the fever. I didn’t take aspirin, which can thin the blood. Instead, I took Tylenol (acetaminophen) or Vicodin (hydrocodone plus acetaminophen). Beware of taking both Tylenol and Vicodin; you don’t want to overdose on acetaminophen. Sometimes I had neuropathy, a sort of numb tingling, in my feet. Once I felt as if I had stepped on slivers of glass. (I still have more feet cramps than I did before.)

My hair began to fall out after the second round of Gem/Tax. Unlike other people, I chose not to shave my head. But I had to be careful not to clog the shower drain, and my sister vacuumed the hair off my bed. Some people wear a cap at night to catch the shedding hair – or to keep their bald head warm. I had scarves, hats and a wig. But I often went bald because it was more comfortable. At the end, when I was just getting Gemzar, my hair began to grow back. In other words, it was the Taxotere that caused me to lose my hair, not the Gemzar. The chemo caused my toenails and fingernails to turn yellow or black, peel and chip.
My mouth, tongue, gums and teeth felt sore. I had to brush with baking soda; regular toothpaste was too harsh for me. Some people use Miracle Mouthwash when they have mouth sores.
Your mouth may be too tender for much dental care. If your platelets are down, your mouth may bleed. If your immune system is down, you may get an infection. You may have less saliva, making your mouth dry and more susceptible to cavities. You may get a fungal infection, such as thrush. I managed to avoid these problems, in part because I had my teeth cleaned thoroughly before I started chemo, and I returned to the dentist whenever I had a “vacation” from chemo. On Gem/Tax, I had horrible diarrhea, and my nurse allowed me to take more than the recommended dose of Imodium. The next week, I’d have painful constipation even though I took Senecot pills and milk of magnesia. Diarrhea and fever can lead to dehydration. Also, if I was lying down, I often wasn’t drinking anything (despite having bendable straws). It’s easy to get dehydrated without knowing it. Once, I felt lightheaded and dizzy. It turned out my blood pressure had dropped to 60/30. Again, I was sent to the emergency room, where I got an IV to rehydrate me, and I ended up staying in the hospital a couple of days.


 

IMMUNOTHERAPY

 

Vaccine Phase I Trial
By Sharon A.
June 2004 (update 1/1/2017)

I volunteered in a cancer vaccine trial in the spring of 2004, at Dana Faber Cancer Institute, in Boston, MA. At that point in time, I had been diagnosed with uterine leiomyosarcoma for two years, with a single lung met surgically removed a year after my diagnosis. Surgery had been my only treatment; I had declined radiation and chemotherapy. Physically I was fit and tumor free. Mentally I was a wreck. I was knew this leiomyosarcoma stalker was looming close, about to jump out at me again. I had to find something I could do, before I got more mets. But, I did not want to use up my chemo options and cause permanent damage to my bone marrow and nervous system.

Cancer vaccines offer just that. The immune system doesn’t always destroy cancer cells, because the cells are not recognized as foreign. They escape the immune system. You can have a perfectly strong immune system, and still get cancer. Vaccines are attempts to get your own immune system to “learn” to recognize the cancer cells anywhere in your body and destroy them. Vaccines work best on smaller amounts of cancer cells and in theory, should not have any side effects. There are no limits to the different variations of vaccines you can have in trials. Most vaccines are universal – meaning the can be tried with any type of cancer. And, most important, some phase I vaccine trials will accept patients who show no evidence of measurable disease, i.e., tumors.

I searched for “vaccines” on the clinical trial websites and to my surprise found several which included sarcomas. I phoned the trial sponsors directly, who were very, very helpful. I entered a “telomerase vaccine” phase I trial, which was aimed at helping my immune system attack and kill off the cells which extra long telomere. The telomere tells the cell, how many times it may duplicate itself, before dying. Having unlimited ability to duplicate itself is one of the main characteristics of stem cells and cancer cells. The researcher assured me, that my stems have “immune system privileges” and would not be harmed.

This trial administered nine vaccine shots total. I traveled to Dana Farber, every other week. For four days, I received one immune builder shot. On the third day, the vaccine shot was also given. I would spend about an hour each day at Dana Farber… Most of that, was checking in, taking occasional blood samples, and waiting 15 minutes. after each shot before heading out. I experience no pain and as expected, no side effects. After my 6th vaccine shot, it was time for my routine 3 month CT scan. Unfortunately, the CT scan revealed a fast growing met in a lymph node just outside of my lung. The lung met disqualified me from continuing in the trial. I had it surgically removed with no problems. The researcher told me that according to my blood samples, I had not been a responder to the vaccine. He later repeated this same trial again, but gave a stronger immune booster in hopes of stimulating strong responses. I am looking forward to reading the results of his trial.

I have not had another tumor since then, 13 years out from that lung met resection. In that time period, cancer vaccines for cervical, prostrate and other cancers have made great strides. Currently there are several vaccines trials in the USA, which will include leiomyosarcoma patients. Visit LMSdr’s Clinical Trials to find current listings & information.


 

Hormones and ULMS

 

The Need for ER/PR Testing of all Uterine Sarcomas
Presented by Shirley Collings, uterine leiomyosarcoma survivor, at the British Sarcoma Group Conference
January 31st, 2008

My leiomyosarcoma history is shown below: it is complicated but sadly all too common and, of course, it includes what I believe you in the trade call a ‘Whoops’ procedure.

TAH/BSO Sept 2003
Uterine leiomyosarcoma diag Oct 2003
Local recurrence & lung mets Feb 2005
Recurrence surgically removed Apr 2005
3 cycles Gem/Tax Sept-Oct 2005 (unsuccessful)
Minimal growth “watch & wait” to June 2006
ER positivity test 87% pos June 2006
Cessation of estrogen only HRT, started letrozole July 2006
Almost 10% shrinkage in 1 met, stability in others Oct 2006
No changes whatsoever Jan 2007
No changes whatsoever again April 2007
1st thoracotomy a success, 3 nodules removed Aug 07
2nd a success, 6 nodules removed Sept 07
CT scan showed 1 small nodule remaining 4 mm, seen before surgery Nov 07
CT scan showed same nodule has increased 1 mm, Jan 08
Next CT scan April 2008

By December 2005, I had been through 3 cycles of gemcitibine & docetaxel, to which I showed no response other than my oncologist giving me a very depressing prognosis. No old age pension for me!! Panic set in and I started to research my gremlin in earnest on the internet. I was drawn to the heated online discussion on leiomyosarcoma (LMS) sites in the USA over the value of testing uterine leiomyosarcoma (ULMS) tissues for hormone receptor sensitivity. Now it seemed to me that any cancer that has its origin ‘down there’, and which is surely in some way connected to, or influenced by, the hormones coursing through our bodies, should be so tested for hormone receptors. ‘No’ said my oncologist. ‘ULMS is rarely hormone dependent’.

Eventually, in May 2006, in response to my increasingly fervent requests, my tumour was tested for hormone receptor sensitivity and it came back 87% positive for oestrogen receptors. My oncologist called me in for an urgent (!) appointment, he took me off hormone replacement therapy (HRT) immediately and prescribed the aromatase inhibitor (AI), Letrozole. This new regime kept me completely stable for well over a year. More impressive, there was 10% shrinkage in the largest met after only 3 months. Further research suggested that this long period of stability meant surgical removal could be reconsidered. My new oncologist (we had by then moved) agreed and last year I had two thoracotomies at the Royal Brompton Hospital in London. There is still one lurking lung met, but I am currently ‘cautiously optimistic’ – we shall see!

So much for me, but why am I up here, in this very unfamiliar situation? The apparent unwillingness of some in the medical profession to request the hormone receptor test for uterine sarcoma patients seems to me to be illogical, and so I want to convince you that the testing of uterine sarcomas should become a routine part of the diagnostic process. I know that cessation of HRT- hormone replacement therapy and treatment with AIs is not relevant to or effective for all uterine leiomyosarcoma patients and obviously this has to be made clear to individual patients. However if patients’ tumours were to be tested routinely, as part of the diagnostic process, the results and implications could be discussed along with other treatment options, where appropriate. My research into this subject has shown that the percentage of uterine leiomyosarcoma patients with hormone positive tumour receptors ranges from 45%-85%. Why such a huge variation? Is it because the tests are not done routinely and therefore no definitive statistics are available?

Does this mean that if the tests were done routinely, there WOULD be evidence based information on which to base a valid statistical study, albeit with a small patient population? The test isn’t expensive – I am told by the trade that it costs under £20. Nor are AIs cost prohibitive. The NICE website quotes the cost to the NHS of Letrozole for example as about £90 a month. It must surely be worthwhile doing the test before spending thousands on chemotherapy, radiotherapy or other expensive and possibly unsuccessful treatments. Professor Judson assured me early last year that the Royal Marsden in London now routinely screens all uterine leiomyosarcoma for ER/PR status. I have also been told that uterine leiomyosarcoma patients in the East of England region will henceforth be tested when the consultant oncologist “believes it may be worthwhile to the patient”.

So there has been some progress. Unfortunately, through Sarcoma UK I continue to meet uterine leiomyosarcoma patients who are unaware of this test, and the potential benefits of HRT cessation and treatment with aromatase inhibitors. I strongly believe that this option should always be explained to patients by a member of their sarcoma healthcare team. Surely the cost to the patient of not doing the test is too high? “Wait and see” could mean allowing time for the uterine leiomyosarcoma to spread – as happened to me. I am convinced that if hormone tests were done routinely upon diagnosis, more women would survive longer.
Sarcoma researcher Ian Judson, informed Shirley that the new standard practice on ER/PR testing is being implemented in England due in a large part to her campaigning. Shirley’s own story about her successful treatment for hormone sensitive uterine leiomyosarcoma can also be read on the UK Sarcoma winter 2006/7 newsletter, “Uterine sarcoma and HRT”