Alex from California - Dx Aug 2018 at 19

[Olga]

Hi, the best choice for the lungs cryo is Dr.Littrup, and the close second is Dr.Aoun - they used to be the same team when Dr.Aoun was starting. But seeing the stable and very small mets, they will not likely agree to ablate them at this stage, as they are easy to miss size - but I am not discouraging you to touch bases with them and start the history of the scans for the review by them.
https://healthcare.ascension.org/doctor ... chester-mi
https://www.karmanos.org/karmanos/karma ... ssein-8261
good luck, we are happy to hear that your son is doing very well.

[D.ap]

Hi Janice and Alex,

It’s truly good to hear of slow progression of the lung mets.
Also I wanted to remind you of folks in California who you can contact .
Jolie( mom Chrisann) , Nhi and Jen.

You can PM them as well .
Good to hear from you !
Love ,

[ntran727]

Great news Janice! Stability is always good. The scans were a bit confusing but I guess he has 2 stable pulmonary nodules at this point? It seemed like he had more on the left they mentioned but on the latest report was not there. It’s also great that he’s not on any systemic treatment since he will have a lot of options if he ever needed it. It is also not definitely that the lung nodules are metastasis correct?

[Janice]

Yes, the nodules are NOT confirmed mets and yes, it seems the scans are interpreted differently each time - both number of nodules as well as size. It bugs me that Kaiser lists his cancer as sarcoma vs ASPS as I wonder if the techs might look with a more discerning eye?

I ask for the CDs each year so we have them.

I thank our lucky stars that he is able to continue to live life to the fullest as a college student.

Thanks all.

[Naynay]

Hi Janice,
Just caught myself up on Alex's journey. I'm glad to hear that whatever is in the lungs has remained stable over several scans. Just wanted to echo that I know what you mean about scan measurements. I've noticed the same with my partner's reports. Especially the measurements between MRIs and CTs. There's even been inflammation that's popped up here and there, just to clear by the next scan. Since no human/radiologist is the same, there's always room for variation to some degree. You're doing the right thing though, keeping a watchful eye on the reports and asking questions. :)
All the luck to you and Alex.

[D.ap]

Hello Janice ,

So Alex is 2 years post surgery , of his primary ?
When his primary was found , was his anemia also found to be out of norm ?

With the sperocystsis and not having a spleen , how is that managed ?

[Janice]

August 2018 tumor was removed and had been there for probably 2 years.

Alex has never had trouble with iron levels - we have always been told we have more than enough.

We have to get immunizations for pneumonia and supposedly have comprised immune systems...but we have always been healthy as it my 85 year old mother who as has the mutation.

Both ASPS and spherocytosis involve the 17th chromosome. Though there may be not relationship.

Janice

[Janice]

And so it goes for 5 years - Alex continues to track and seems to remain without metastatic disease. I post to give hope to those recently diagnosed.
We scan bone and brain as well annually.

September 2018
Primary removed 3.4 x 2.9 x 2.7 cm from right thigh along with entire rectus femoris muscle
LUNGS: No metas seen but not they are use this image as a comparison

April 2019
LUNGS: 2 mm subpleural left lower lobe lung nodule on series 4, image 150, stable. 3 mm disc-shaped lung nodule within the left lower lobe on series 4, image 210, stable.

August 2019
LUNGS: 6 mm left lower lobe pulmonary nodule, series 4 image 217, unchanged dating back to September 11, 2018 by my measurement. 2 additional stable 2 mm left lower lobe nodules, one on the major fissure, image 155.

May 2020
LUNGS: Bilateral lower lobe pulmonary nodules measure 5 mm on the left side and 3 mm on the right side. These are stable dating back to 9/11/18. No new pulmonary nodule.

October 2020
LUNGS: COMPARISON: 05/13/2020, 9/11/2018 The 5 mm pulmonary nodule left lower lobe image #214 series 4 is a stable since 2018.
There is a 3 mm right lower lobe pulmonary nodule is not well visualized. There is no evidence of new pulmonary nodule.

April 2021
COMPARISON: CTs 10/22/2020, 5/13/2020, 9/11/2018
LUNGS: Left lower lobe lung nodule measuring 5 mm (series 4, image 11). Stable left lower lobe lung nodule measuring 5 mm since 9/11/2013. Indeterminate lung nodule(s) in a patient with known or suspected malignancy stable for 18+ months. Recommendation: No follow-up CT unless otherwise planned as part of this patient's care. (#PUL1f)

October 2021
LUNGS: 6 mm solid pulmonary nodule involving the left lower lobe, series 4 image 219, unchanged since the 9/11/2018 comparison by my remeasurement. 3 mm pleural-based left lower lobe nodule on the major fissure, image 156, also stable.

April 2022
LUNGS: Unchanged left lower lobe 6 mm pulmonary nodule on image #200, series 4, stable dating back to 9/2018. There are a few 2 to 3 mm nodular densities along the left major fissure that are also stable dating back to 2018. Greater than two-year stability is compatible with benign etiology. No new pulmonary nodules.

April 2023
LUNGS: Stable 6 mm subpleural left lower lobe nodule, series 4 image 215

April 2024
Stable examination with stable left lower lobe 6 mm pulmonary nodule and stable sclerotic bone islands in the left proximal femur.

We watch and feel blessed as he continues to be a 25 year with life in front of him.

Enjoy Spring!

[D.ap]

Janice ,
This is absolutely a best report , that a family can get!
Thank you for sharing this with us.
Love ,

[Janice]

Thanks Debbie - With all the scans, and subsequent contrasting agent, we need to worry and track kidney impacts. Testing for kidney function too.

Janice