Jen from California - Dx 2009

[arojussi]

Upset stomach is really typical symptom with medicines like anlotinib. So that is most likely explanation for stomach proplems.

[D.ap]

Jen
Hello
What about the gluteus / muscle imaging ?
What is the explanation for that ?

[Olga]

Jen - just FYI, Ivan also had a met in a glute - it was found pretty late as the abdominal MRI rarely goes that low but the radiologist just happen to take the view lower than usual. so may be your glute met is not new also? Ivan had a good use for this met - it was irradiated SBRT at the same day with the second Keytruda dose in attempt to attract the immune system attention to it and have a sniff and a bite:) We have no idea if it worked, but location wise it was convenient and low traumatic for other organs/tissues - if SBRT is used to target it precisely, with the narrow margins

[ntran727]

Hi Jen,

Glad your scans are “stable,” aside from the new Mets in the gluteus. How many are there and what sizes?

In regards to your abdominal issues, pretty sure it’s from the medication because it stops as soon as you go off it. Same thing happened to me with sutent where I kept getting chest/rib pain and at one point thought maybe it was a met, but it would always disappear after stopping the medication. Now that I’m off Sutent for good I never have that side effect anymore. It’s hard to trust all the scans, as some things can always be missed but it’s also difficult to be able to sit down and look at all of them with a radiologist yourself. Best is to keep your eyes peeled and request to read it with a radiologist once in a while so nothing gets missed.

Your echo looks great! Aside the mild tricuspid regurge (which is nothing) and them not being able to visualize the right ventricle well, your heart looks healthy and is functioning normally. Why did the do the echo in the first place? I agree Cardiac MRI would be better to detect Mets but was wondering if you had any symptoms that led to them ordering the echo?

[D.ap]

With Luke, Jen’s husband s permission , and with a heavy heart I post ..

Dear all,

With a broken heart I am writing to let you all know that after a long and trying battle, my beautiful Jennifer passed away on May 6th right as the sun was coming up. Her final hours were completely painless, calm, quiet and peaceful. She took her final breath while I was singing the lullaby she used to sing to me and holding both her hands tightly, with her family surrounding her.

She was the most tender, compassionate, and selfless person I know - my soul mate and best friend - and a true goddamn warrior inside. For the entire 10+ years I was next to her in this fight, she never once gave up.

To all of you in this wonderful community, she loves you all and gives you her strength to continue fighting. I know this support group gave her so much hope, family, and love and helped her live longer than all her doctors estimated as she truly relied on the shared info amongst the group. Thank you all for being there for Jennifer all these years. She lives in all of us now and I will love her with all my heart forever. She was the very best of us all.

Jen lived a colorful, full life and never let her condition stand in her way.

Stay strong in her memory and never stop fighting.

Love,
Jen and Luke

[Olga]

We are shocked and saddened by Jen's life taken by this cruel disease. Still processing this sad news. Very grateful to Luke for reaching out.
Olga and Ivan

[Bonni Hess]

It is with the deepest profound sadness, sorrow, grief, and shock that I read about the devastating loss of dear courageous ASPS Warrior Jen's precious young Life to this cruel and unrelenting disease. I am deeply grateful to dear Jen's loving husband Luke for somehow finding the emotional strength to so thoughtfully share this tragic news with our ASPS Community, and I SO deeply share the immensity of his sorrow and loss. We will continue to honor dear Jen and the incredible courage and perserverance with which she SO valiantly fought her increasingly challenging ASPS battle, as we continue to fight this insidious disease which has now SO cruelly taken her from this World. Jen's bright spirit and the Hope for the cure that SO tragically eluded her, will continue to lead us on this VERY difficult shared journey, and she will always be held VERY close in my broken heart and special memories of her.