Cure Alveolar Soft Part Sarcoma International (iCureASPS)

When they discovered the tumor and my abnormal Chest X-ray, they biopsied the R thigh and then put me in the hospital for 5 days of arterial infusion. From what I can remember they ran a cath from my L groin to my R groin (tumor was in my R inner thigh) I had 5 days of chemo where I had to lay flat. It was horrible. I believe I had Adriamycin for 4 days then Cysplatin for the last day. Shortly after that I had the tumor in my R thigh removed. I remember him telling my mom that they got it all and they had a pathologist there to tell them when all the margins were clear. It took them approx 6 hrs. More chemo after that following the next few months, Adramycin and then DTIC.

If my memory serves me well I was dx in December of 1983 and by summer of 1984 I had tumor excised and then both lung surgeries 1 month apart, July and then August. I also remember him telling me they left 1 small tumor the size of a quarter because it was in an in-operable area. I think I had one month after the lung surgery and was started on Chemo every 3 weeks for 2 1/2 years. It was brutal, they wanted to put a port in my chest and my mom couldn't stand to see me have another procedure. I had chemo all that time from peripheral IV starts. I was also 60 lbs and I was 14 years old. I guess I looked like death. I never viewed myself like that and I never lost hope.

Over that last few years I have started telling my patients my story. The other day a patient asked me if there was "anyone like me". It hit me hard and I said no, they all died. I had the most disease and as far as I knew, the only survivor. Many ask me, why do you think you did so well? I usually say aggressive treatment and probably a little Divine intervention. I just can't say for sure.

I started feeling better at age 18-19 and I decided to go to school. I was looking and feeling great. I received my BSN at Linfield College here in Portland OR and most of my career and training is in Emergency. In 1997 despite all the toxic chemo, I had a beautiful son. He is now 10 years old. I am truly lucky.

I have a PCP, my oncologist retired many years ago. My last chest x-ray was approx 6 months ago and all looked clear. I went to my primary because I read an article about ASPS and it had said there were reports of primary tumors coming back after 30 years. I was so upset and tearful, I never had anxiety before and I found myself not sleeping and basically just a mess. After all that hard work, I was not going to let this stupid cancer come back and take me from my husband and son. My husband made me call Dr. Hollemon and he ordered a chest x-ray and lab work and then we laughed at my stupidness. He gave me an order to stay off surfing the Internet.

Camilla

Camilla, do you know what was the adjuvant chemo regimen used, I am trying to guess what can be given every 3 weeks for 2 1/2 years, especially knowing that Adriamycin had already been given before of the surgery already so it couldn't be AIM or MAID, may be it was ICE? Do you know where are the medical records located now, how long are they getting kept at the hospital, you live in the same are, right?
We actually in a complete dark here with the chemotherapy in ASPS. The experience of using it in a advanced metastatic setting is that it is not only useless but also harmful, it looks that it may actually speed up the progression - but the outcome is the same in many metastatic sarcomas in its advanced state using without resection (like osteosarcomas) but these are known now to be cured by the combination of the surgery+chemo after addition in the 90-ties of the new intense chemotherapy regimen in an adjuvant setting after the surgery to remove all the visible disease incl. lung mets. The only documented cases of the really long term survival initially metastatic ASPS (and also disease related event free) are similar to yours wher the total resection was combined with the intense chemotherapy, or may be it is the only one well documented case - it is the case that Dr.Nickerson has recently published - when 10 years after he treated his patient in a sequence similar to yours has passed without any disease related event at all, he used an Ewing's protocol there. It is a pity that apparently your case can not be documented, sometimes the institution can do it to describe a rare experience, but they probably will not be interested. Thank you for sharing this info.

olga
I sent you a reply on my home email. I hope it helps. I could try and get my records from OHSU.

To cover my head from bombarding by the e-mails from everyone here reg. "what did she tell to you reg. ASPS treatment that we do not know" - there is a short summary in a random order, just things that I found important for everyone to know:
1. It all started as a big vascular tumor in the R.leg -found a lump- and multiple bilateral metastases (stage 4 at the presentation)- X-ray was abnormal.
2. Case was transferred from the local hospital to Dr Fletcher W.S., who was the guru for sarcomas and the Chief of Surgery at OHSU (Oregon Heath Science University), now he is late 70's and retired. Camilla remembered that he has published an article reg. her case back then, I couldn't find it.
3. He had is biopsied and Dx. The treatment schedule was:
chemo, resection of the primary, chemo, bilateral thoracic surgery and then more chemo. It was all within 8 months before of the pulmonary resection and then 2 1/2 years of chemo after that. Exact regimen is not known yet.
4. Pulmonary resection was NOT complete, there was a visible quarter sized centrally located nodule which represented a technical problem so it was left intact. The surgeon was obviously very gifted and daring doctor, as we all know even now it is hard to find a surgeon agree and able to resect that many lung metastases.
We had a few unfortunate cases when ASPS was found already metastatic at the presentation and the treatment was palliative from the beginning, with even primary left intact. These people had their chance as we can see now. If this case was properly documented and published it could be used as an arguments for an aggressive treatment of the people with the stage 4 ASPS.

Camilla,
Would it be possible for me to get your email address. My son Anthony is being treated at OHSU and with your permission I would like our Dr. to review your case history.
Scott

Camilla,

What a wonderful testimony! Thanks! And you are right about surfing the internet...there is a lot of doom and gloom and speculation...it takes awhile to sift through the factual, valid data.

Elaine