Cure Alveolar Soft Part Sarcoma International (iCureASPS)

My husband, Jon has been fighting ASPS since June of 2006. He currently has innumerable lung mets and multiple bone mets. His primary tumor was located in his left thigh, and was resected once (Jan. 07) but since has returned. We are currently under the care of Dr. Mark Fesen at the Promise Regional Hospital in Hutchinson, KS. He is on four different chemos currently. They are; Sutent, Taxol, Gemcitabine and Avastin. Chemo is rough, along with iv nutrition and fluids he is on multiple medications for his heart rate, pain and different vitamin deficiencies.

I was wondering if anyone out there knows of ASPS patients who have used the Taxol, Gemcitabine or Avastin and how effective they were.

Hello skinnyangel,
I am new here and to ASPS so I cant reply well to your post an help.
I am so sorry that you are both going thru this
There are great people here and I am sure when they log in and see your post they will reply

Amanda R

I am very sorry to hear that Jon is having such a hard time. In our community we have some experience in the successful treating of the ASPS bone mets with the RFA or radiation so you should bring that to the attention of his doctors as left untreated they might greatly affect his quality of life.
Regarding your question about the 3 chemotherapy drugs. I think that we had someone on the chemo combo that included Taxol with the mixed result and a toxicity from the Cremophor that is sued to dissolve it, we also had a member on an Avastin only treatment that had a short lived a few month response and we had a member who's mother told us that her daughter was on the clinical trial for gemcitabine only for 18 month and saw her lung and liver mets mostly regressed, I have asked her for an additional information at the time (it was a few years ago) but she did not respond. You have to understand the limitations of the recollection of the other people experiences - it is all unproven anecdotal information without doses, schedules etc.
I want to bring to your attention that there is a very recent publication in J.Oncologist that in a trial that was testing safety of sunitinib (Sutent) in combination with bevacizumab (Avastin) in patients with advanced RCC (renal cell carcinoma) was found that the combination of sunitinib and bevacizumab caused a high degree of hypertension and vascular and hematologic toxicities at the highest dose level and they do not plan to pursue additional study of this regimen at these doses - check with his oncologist if he is aware of this study and what doses of these drugs are used for your husband. From the result of the study it seems that these two drugs are very toxic in the combination.
The article is here:
http://www.ncbi.nlm.nih.gov/pubmed/19224847
Phase I trial of bevacizumab plus escalated doses of sunitinib in patients with metastatic renal cell carcinoma.

I forgot to ask - what scan was used when his multiple bone mets were found and where are they located.

Hi there,

With the presence of bone mets, that does put Jon at more risk. There has been limited data with Sutent and Avastin in ASPS - and it looks as if Sutent has a more sustained effect. The Avastin may be adding toxicity, but not much additional benefit - but these are all things to discuss with your oncologist.

Gemzar may have efficacy, but Olga is right - this is anecdotal, and we do not have long term follow up from this case - and it was used in isolation. I did look back in Yossi's archive and I might try emailing the mom again about the details. Olga had tried and gotten no response. It sounded promising. She said her daughter was diagnosed in 1997. Had Ifos + something else, tumors grew to 40 in the lungs, then took Gemzar only x 18 months - many tumors sloughed off. Those that remained stopped growing.

In 2001 and 2005 she had wedge resections for 2 tumors that started growing again.

There are several patients who seemed to have the Gemzar / Taxotere combination and that caused too much toxicity and cancer progress. "More" chemo is not necessarily better in ASPS or so it seems, if "more" means high doses of different drugs. Also because Jon is on anti-angiogenesis inhibitors, best to read up on Tyrosine Kinase inhibitor rebound - this is a very new information out from Sloan Kettering. They do not recommend suddenly stopping these meds (i.e. taking, then going to no meds).

Metronomic chemo is a different sort of "more" (low doses), but I do not think it would be indicated in your husband's situation if the tumor burden is moderate to high.

Thank you for all of your responses. I wish that I had posted earlier in the treatment schedule to be able to give these posts to Jon's oncologist. Unfortunately today at 9:15 am Jon succumbed to his disease. He did go peacefully and on his own terms.

Thant is a huge loss for you and a shock for us and there is nothing really that can be said to easy your pain, I am so sorry to hear that. I just need to ask one specific question - what was the cause of death, do you think it has something to do with the toxicity of the chosen regimen?

Deep condolences to you and the rest of Jon's family. -

I am so deeply sorry for the tragic loss of your beloved husband Jon. I have been closely following his courageous battle on his personal Blog, and was so very Hopeful that the Sutent would be successful in stabilizing the progression of his disease. I was not aware from the updates on his Blog that the other chemo agents had been added to his Sutent treatment regimen. I do know from what Jon and his brother wrote on the Blog that you brought great happiness to Jon's Life and that you were so very faithful in your love, devotion, care, and support of him during his increasingly challenging journey with this insidious disease. I know that words cannot ease the profound pain of your devastating loss, but please know that I am sharing your sorrow and holding you, your angel Jon, and all of his family very close in my aching heart , my most caring thoughts, and my very special prayers.
Heart to heart with deepest sympathy and caring,
Bonni Hess

Dead skinny,
I am so sorry for your loss. I am glad he went on his own terms it is important he got a chance to finaly have some controle over his situation and ASPS and pass in peace in the way he chose. There is a short poem that when i loose someone that i have loved deeply i look to. I believe that even when people we love leave this earth they are still within us. So i will share this with you.

Hold on to what is good even if it is a handful of earth.
Hold on to what you beleive even if it is a tree which stands by itself.
Hold on to what you must do even if it is a long way from from here.
Hold on to my hand even when I have gone away from you.

I hold hands with my mother now and my two best friends. Two of whom were taken away by cancer from me.
When i read your post my heart broke. I cant say that if you had come to this board sooner if this would have helped or not. So please do not even add that to your pain

My thoughts and prayers are with Jon and you and your family and friends.

*Hugest hug to you*

Amanda R