Jolie's mother from California - Dx Oct 2013

ASPS patients post updates here, including tales of success :)
Olga
Admin
Posts: 2349
Joined: Mon Jun 26, 2006 11:46 pm
Location: Vancouver, Canada

Re: Jolie's mother from California - Dx Oct 2013

Post by Olga »

Jolie, centrally located metastases are a very difficult place to resect or cryoablate but unless you have consulted few leading surgeons re. resection and Dr.Littrup re. cryoablation, these options are not completely investigated I would say. Many of us here have been here having received the negative opinion from some surgeons and acceptance from the others.
Olga
JolieS
New Member
Posts: 56
Joined: Thu Oct 10, 2013 11:31 pm

Re: Jolie's mother from California - Dx Oct 2013

Post by JolieS »

She isn't on treatment, no. Her scans from the first week of September were clear save for this large mass in her upper right lobe. But it was stable. In the past 4 weeks it grew significantly.

Her pulmonologist performs cryroblations, not the same type of specialist as the Dr. in Detroit. He says her tumor is too large and in too risky of a location for it to be an effective option. Because of her HMO insurance we aren't able to just make an appointment with another specialist like Dr. Suh for his consultation. We can't afford to pay for a procedure out of pocket either.

If the bronchoscopy confirms that it is tumor growth (and not a blood clot or dead tissue, which Dr. said is unlikely due to the shape on the scan) then we will make a plan to treat it again. I don't think my mom is up for a massive surgery to remove her lobe even if we could find a surgeon who would do it. She's very tired of treatments, she has been through so much. Her oncologist said for sure the neuropathy was caused by immunotherapy and not her brain met, and that this same tumor had grown while the others all disappeared so it may be resistant to immunotherapy. I think he's considering another type of drug trial, something similar to Votrient. And possible radiation again.
D.ap
Senior Member
Posts: 4137
Joined: Fri Jan 18, 2013 11:19 am

Re: Jolie's mother from California - Dx Oct 2013

Post by D.ap »

Jolie

How’s your mom doing today ?

How long has your mom been on anti seizure med ?
Hang in there lady.

Chrisann has been off Keytruda since July 2019?

Bloodwork showing infection possiblity?
When u mentioned it growing fast , what was the before and the most recent ,report of size ?

Love to you .

We thought a lung X-ray was ASPS progression in Josh case few years ago.
That spherical shape.
Not so. It was the way pneumonia and was viewed, and consequently passed onto our team by another radiologist as progression .
When ER radiologist see ASPS as diagnosis and then views X-ray for the first time it’s quite alarming. A 5 alarm reaction .
:/

Love to you
Debbie
Post Reply

Return to “Personal Stories and Updates”