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