Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I found her! Because the medication Gemzar (Gemcitabine) is an approved drug now (available to every oncologist) and there were reports years ago of a young woman with metastatic ASPS who had tumors slough off with it, I started searching for her and I found her - and spoke with her and her mother tonight.

She is 11 years after the initial Dx now and is NED for the last 4 years (no evidence of disease). Sarah's Mom Nancy kept track of all of the medical details and she is going to see if she can have her chart pulled and share the dosing with her. Hopefully this may help others with ASPS. There are several cases of ASPS patients who got worse with the combination of Gemzar + Taxotere, so be aware of this. Also Sarah's dosing of Gemzar NEVER caused immunosuppression. I saw that treatment of other solid tumors often cause immunosuppression so wbc stimulants were added, platelet transfusions etc..

Sarah presented 20 yo with a thigh primary (as large as a fist, wrapped around the femoral artery) - 10 tumors in lungs bilaterally - all about 1 cm. Traditional chemo x 6 (9 hrs/day x 3 days, lost hair 7 days after chemo) ...afterwards 40+ tumors. Heard about the clinical trial at the University of Colorado. Got admitted as an "exception" so her data never included in the clinical report.

Sarah begun Gemzar infusions (over 1 hr) once a week - took on Friday, wiped out weekend (flu-like symptoms), but able to work on Monday. Weekly x 3, 1 week off, then repeated. After the first 7 weeks, no new tumors, after the next 7 weeks fewer tumors, then after 7 weeks more...only 10 tumors remained. I think it's pretty nice that the response occurred fairly quickly.

Off medications - watched some stable metastases...after 4 years only 3 tumors remained (none larger than 1 cm) - removed with thoracotomies...found to be active alveolar soft part sarcoma. It may have been helpful too that Sarah's doctors removed metastases as soon as they got to be about 1 cm. Her primary by its description sounded larger than 5 cm though.

Now Sarah has been NED for 4 years with yearly scans.

Sarah said the experience of Gemzar was like getting a bad flu. She would just start feeling better, then it would be time to get an infusion again...still she was able to work through this. She did have trouble going to school full-time though.

Re: other side effects, Nancy also recalled it helped to give a lot of fluid (6 bags of saline every weekend).

Hello 'F',
Thank you for this up date!
It allways makes me feel better when I hear these stories. I will also be talking to my Onc when i see him about trying this and get his feelings about if it will work on me if needed.

Thank you again!
Amanda R

'F', Appreciate your effort and thanks for sharing this information with all of us.
It is very encouraging to hear such success stories.

'F' - you are rock, I told this story about someone having apparently cured by the gemcitabine alone a few times already but it took your determination to find her!
Sarah's Mom Nancy - thank you for sharing this valuable information with us and not being scared away by someone calling at night with the question about events happening almost 10 years ago, we have dozens of people here with no systemic treatment options for now and this report will be really appreciated by all the community. I have a few questions though -
1. Is is possible to get a contact information of the Sarah's oncologist so our oncologists could contact him.
2. When Sarah was Dx - what year?
3. What was the year when she started the clinical trial for gemcitabine only that was conducted at the University of Colorado (we can then find the protocol and dosage), why the treatment as off the trial and not on the official trial?
4. When was the primary resected - before or after gemcitabine treatment?
5. Did she have any other metastatic sites besides lungs - I vaguely remember something about the liver or it wasn't her?
6. Does Sarah have any long term side effects from that treatment?

Thank you both so much again and we are looking forward to get more info on this treatment.

Sarah was diagnosed in 1997. She lives in Wyoming, but travelled to the University of Colorado for the study.
I think Nancy told me she works close to the hospital and her community has only 5000 people so everyone knows each other. She was going to see if she could have Sarah's chart pulled. Amanda and others, I gave Olga, Bonni, and Yossi Nancy's email address - Everyone will want to contact her, I suspect...

As soon as we hear about the actual doses used, I'm sure we'll post them.

Olga if you want to contact Nancy by email and ask about the oncologist - do that and post anything you learn from her. I also have phone numbers if you don't get an answer by email. They are lovely people and are praying for everyone here on the forum. They do not know of any long term side effects of the medication. I didn't think to ask if Sarah has children now.

There is some summary of Sarah's experience with the gemcitabine only treatment for the stage 4 ASPS, it is written based on her mother recollection (thank you Nancy!).

Sarah was diagnosed in 1997. She lives in Wyoming, is 11 years after the initial Dx now and is NED for the last 4 years (no evidence of disease).
Sarah presented 20 yo with a thigh primary (as large as a fist, wrapped around the femoral artery) - 10 tumors in lungs bilaterally - all about 1 cm. Traditional chemo x 6 (9 hrs/day x 3 days, lost hair 7 days after chemo) ...afterwards 40+ tumors. Heard about the clinical trial at the University of Colorado. Got admitted as an "exception" so her data never included in the clinical report.

Sarah begun Gemzar infusions (over 1 hr) once a week - took on Friday, wiped out weekend (flu-like symptoms), but able to work on Monday. Weekly x 3, 1 week off, then repeated. After the first 7 weeks, no new tumors, after the next 7 weeks fewer tumors, then after 7 weeks more...only 10 tumors remained. She remained on a trial for its duration with the continued response from her lung metastases.
Off medications - watched some stable metastases...after 4 years only 3 tumors remained (none larger than 1 cm) - removed with thoracotomies...found to be active alveolar soft part sarcoma. It may have been helpful too that Sarah's doctors removed metastases as soon as they got to be about 1 cm.
Now Sarah has been NED for 4 years with yearly scans.
There is some random additional information about the case:

Sarah said the experience of Gemzar was like getting a bad flu. She would just start feeling better, then it would be time to get an infusion again...still she was able to work through this. She did have trouble going to school full-time though.
1. Sarah's doctor in Wyoming who administered the Gemzar was not an oncologist, but an internist. His name is Dr. Steven D.Reeb, and he now practices at the only hospital in Cheyenne, Wyoming, Cheyenne Regional Medical Center. He followed the orders of the oncologist at the university of Colorado.

2. The University of Colorado oncologist was Dr. Karen Kelly. She is now the Deputy Director of the University of Kansas Cancer Center in Kansas City, Kansas. Her email address is kkelly ~at~ kumc.edu . She was the doctor in charge of the clinical trial being done in 1998-1999. Sarah could not be in the trial because she had had previous chemotherapy.

3. Sarah has not had metastases outside the lungs.

4. The Gemzar protocol was 1840 mg IV each week x 3 wks, off 1 wk, then on again for three weeks. She did take Inapsine 1cc IV and Ativan 1 mg IV prior to the infusion of Gemzar to quell her anxiety and nausea. Then they continued saline infusion at home, and Inapsine, Ativan, and Benadryl at home prn. The three courses of Gemzar (18 infusions in all) were the only chemotherapy she has received since.

5. Other than Sarah noting flu symptoms (which were eased once we got up to the six bags of saline over the weekend--her infusions were always on Friday), there have been no long-term consequences of the Gemzar.

Sarah's primary tumor was in her left upper thigh. She noticed it in August of 1997. She had been working as a hotel maid in Cheyenne during Frontier Days that July, and just thought the bump on her thigh was from hitting furniture. However, within three weeks, the bump was larger and she called me from college to set up a doctor's appointment here in Torrington. The original MRI report states that the primary mass measured "approximately 4 x 4 cm in transverse dimension and approximately 8 cm in longitudinal dimension." She tumor was resected on October 15, 1997 in Denver. In December 1998 she started chemotherapy--Ifosfamide 4.25 gm with Mesna 4.25 gm IV over 4-6 hours followed by Etoposide for three days. I can't quite make out the doseage for the Etoposide. She received neupogen shots for about five days following the chemotherapy. She received this chemotherapy for five months. The number of lung tumors rose from ten to over forty during that time, so both Sarah and the doctor agreed to stop that chemotherapy.

The gemzar did not start until February of 1999. The doctors truly had very little hope of it working. But at the end of the first seven weeks, we returned to Denver and there were no new tumors. That gave them pause, so they opted for another seven weeks. After that, the tumors were counted at about thirty. So, with a little more hope, they went for another seven weeks. I think after that third course, there were probably ten tumors left. Sarah went to Denver every three months for CT scans and those tumors slowly sloughed off. I believe it was about two years later when one lung tumor grew beyond the 1 cm size, and they resected that tumor. They also took another one which was close to the first. Three or four years later, they resected another lung tumor which had started growing. Since that time, her CT scans show a few places they believe are scar tissue, but they keep watching them closely. She has CT scans once a year, and an open-sided MRI once a year to be sure there is no reoccurance in her bones or muscles.