Cure Alveolar Soft Part Sarcoma International (iCureASPS)

I havent had holter and I dont think it is neccessery as my heart met is asymptomatic. Ekg I propably should have more often at this point. I absolutely should have cardiac mri as soon as possible. Have you been referred to a cardiologist? It's important to monitor any changes, and the holter is so...

For sure if you respond to immunotherapy then surgery can be postponed. Thing is, you must explain to them that you need the MRI immediately since you don't even have a baseline scan to judge how effective the immunotherapy is. When I started taking immunotherapy, my heart related symptoms improved ...

Looks like I dont have to travel to Germany for heart mri, I found finish guidliness were cadiar mri is specifically mentioned for heart tumors. Of course I have to go to go to biggest universal hospital for scans, but as dr Tukiainen has already done so much for me I believe, that having heart mri...

Thanks for response. I just came home from radiation planning for my cubcutaneous arm met. It will be conventional radiation 8 gy four times around the same time as my second infusion. Surgery for my heartmet is most likely more reasonable than in your case, because even though mine is very big. It...

There is science sipporting use of tki with pd1-inhibitor. There is also science supporting yervoy and opdivo together. Also radiation is supported by science, but using yervoy, opdivo, cediranib, fractioned radiation combo is unknown territory, but I see no reason why they wouldnt work together. H...

Here's the second heart tumor which was much smaller to begin with, but currently is difficult to measure

I'm glad I didn't see the imaging before, to be honest.

Thanks, everyone :) Such wonderful news Ivan! So happy for you responding so well to the medication. It is good to know how well Keytruda works in case sutent ever stops working for me. Aside from the sore and dry mouth, do you have any other side effects? Are you still able to work out and function...

That's fantastic news, Amanda :) We were diagnosed at almost the same time, but our courses of treatment have been quite different LOL.

The good news is whether there's ever a recurrence, there's some great options available now that weren't available back then.

Congratulations! You certainly appear to be an outlier as far as Sutent response goes. The good news is that now every year brings us closer to a definitive cures such as this - https://www.forbes.com/sites/victoriaforster/2018/06/04/new-immunotherapy-treatment-removes-all-tumors-in-woman-with-advan...

Hello, everyone I am happy to report that my heart tumor is now 19x13 mm, down from an initial 37x34 mm which corresponds to a ~90% reduction in volume. The abdominal report is preliminary, and the only remaining visible lesion is reported as being "subcentimetre" and showing a decrease fr...

Cardiac MRI results will be available towards the last week of May.

We wrote an appeal letter to the BC Cancer agency, and they agreed to reimburse the cost of the first two pembrolizumab infusions that we paid for out-of-pocket.

Good idea regarding the surrogacy. Sadly, in some idiotic countries like Canada that's illegal. I suppose in the US it's state by state.

I had a lung CT a couple of weeks ago. To be honest, wasn't that curious about the results of this scan since I really only care about the heart at this point. Major ~60% shrinkage reported compared to pre-treatment. Most drastic note was 8 and 9mm tumors which became "no longer visible". ...

D.ap wrote:Ivan

Great to know
You will be at max dose and moving forward !
Good to know .
I’ll review and let you know of questions .
How’s the gut response ?
Thanks for the input .
Till next time my friend
L
Debbie

I don't feel anything off with my stomach, if that's what you mean.