Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Keytruda infusion first, then radiation closely following likely a few weeks apart which should still allow for the synergistic effect but without doing it almost at the same time as last time which increased toxicity. However last time I also didn’t hold the TKI which according to the rad onc I spo...

I had a meeting with Dr. Ming-gui Pan who is the sarcoma specialist at Kaiser within the Northern California region. My oncologist also spoke with Dr. Schwartz (my prior oncologist in NY). The general consensus is to resume Pembro + SBRT to the 5 growing bone Mets (Manubrium, T12, L4, L5, S2). I met...

Such great news! So happy for you Ivan.

I heard back from both Dr. Wilky and Dr. Schwartz, my prior oncologist who both recommended the pembrolizumab + axitinib combo if I can obtain it. Dr. Wilky did say there was some good response with bone Mets from that trial. I wish my insurance would let me get a second opinion outside of Kaiser, b...

I will look into the trial as it sounds interesting but seems like I won’t qualify for any trials due to having only bone Mets and lung Mets that are too small. My LNR has been mostly <2, most recent labs show a ratio of 1 exactly, looks like my lymphocytes has been steadily increasing through the m...

Thank you for the response Olga. I have been reading my own scans and they have been unchanged except for those subtle changes that I stated with 1mm growth and a few new punctate spots. Then between January to now is when the growth took off mainly for the L5, T12 and S2 lesions, about 1cm growth w...

Hi everyone, It has been a while since I posted an update. Since I moved to California in October, my new oncologist and I decided after reviewing my records that it was safer for me to continue with Votrient since I had some grade 3 toxicities from the immunotherapy (Keytruda). Since my scans were ...

So happy for you Ivan!! The adrenals insufficiency sounds like a combination of both but easily treatable so that’s good. Is the salivary gland problem still giving you symptoms? 26 months is a good run on the medication. I hope it continues to give you a sustained response.

Hi Daniel, I agree with Debbie and Olga that you should try to get an ICI drug (Immune Checkpoint Inhibitors. There are many in this class, including: CTLA-4 inhibitor: ipilimumab (Yervoy) PD1 inhibitors: Pembrolizumab (Keytruda) nivolumab (Opdivo) PD-L1 inhibitors Atezolizumab (Tecentriq) avelumab ...

Hi Olga, Sorry for the delayed response. There was a lot going on since we moved to California and had to get settled in. I agree with you that the arthritis symptoms seem to be immunotherapy related. My oncologist also thinks so. Both he and I want to resume the immunotherapy, but he wants to delay...

Hi everyone, Just wanted to give an update. So finally all the radiation side effects were improving and I was able to wean off the steroids around my birthday (end of July). I started back on Pazopanib at a lower dose of 200mg because the higher dose gave me the same sort of symptoms (muscle/bone a...

I am lost for words =(
You will be missed Jussi

Hi Deb, I don’t think it’s the low calcium since I haven’t felt those muscle cramps and the spasticity since I supplemented. The calcium level is also around 8.7 which is not bad. I don’t have numbness, but actual motor dysfunction of the right side of my tongue that’s caused by one of the tumors in...

I had SBRT 3 days in a row followed by the infusion with keytruda and zometa the day after the last SBRT treatment. My calcium levels are still low and I am supplementing with calcium-vitamin D daily. That article Olga posted sure sounds like me. I probably had a high tumor load which made the respo...

It’s very strange because I definitely felt a difference starting back on Votrient especially with that fever that occurred the first day I took it. It’s hard to say because again I tapered down on the prednisone too quickly which may have caused the symptoms to resurface. My feeling though is that ...