[NStewart]

Re: Mom's situation and struggles

by NStewart on Thu Aug 21, 2014 9:56 pm

Springfield-

Call Abramson Cancer Center at Penn ASAP. Dr. Stadtmauer is the chair of the myeloma team with Dr. Vogl, Dr. Weiss and Dr. Cohen also on the team. They only see people with myeloma. If you can't get an appointment in a short period of time then either get one with a general hema­tol­o­gist / oncolo­gist to have the basic testing done to diagnose multiple myeloma or have your mother's primary do the blood and urine tests. At some point in the diagnosis she will also need a bone marrow biopsy, not just a biopsy of the lesion.

If your mother's primary or one of the oncologists who have seen your mother so far can assist you in getting a quick appointment at Penn, that would be good.

In addition to all of this, the Philadelphia Multiple Myeloma Networking Group will be having Dr. Weiss as a speaker on Sept. 13. It meets the 2nd Saturday of every month from 1:30 to 3:30 at the Ralston House, 36th and Chestnut Sts.

I hope that everything begins to fall into place for your mother. If she does have multiple myeloma the sooner she begins treatment the sooner she may have some relief from the pain. It probably isn't a bad idea to still see the orthopedic oncologist because of the fractures that she has. The one at Jefferson is likely connected to the Rothman Institute which has top notch orthopedic doctors.

I see Dr. Stadtmauer at Penn. If you want to contact me personally, please feel free to do so.

Nancy in Phila

[springfield]

Re: Mom's situation and struggles

by springfield on Fri Aug 29, 2014 11:13 pm

Shocking news!

Tuesday night - The biopsy said "Metastatic adenocarcinoma: favor lung origin"

Met with surgical oncologist at Rothman at Jefferson on Wednesday (already had this appointment) prior to call.

Met with radiation oncologist and medical oncologist at Lankaneu yesterday. They confirmed stage 4 and need for more tests to confirm source

MRI and PET today.

Jefferson on Tuesday - but only appointment with radiation oncologist, since my dad says he is overwhelmed.

My parents are overwhelmed and want to stick with Lankaneu because they are comfortable there. I still think we need a second opinion at some point. Either Penn, Fox Chase, CTCA or Jefferson.

I know I don't belong on this forum, but if anyone has a suggestion where to get treatment or second opinion in Philly or any other advice, you can personally email me.

Best wishes to all and many thanks for everyone's kind advice.

Not sure I am ready to face the road ahead.

[Boris Simkovich]

Re: Mom's situation and struggles

by Boris Simkovich on Fri Aug 29, 2014 11:33 pm

Thanks for the update, Springfield.

Sorry to hear about your mother's diagnosis, but it's good that they have a clearer sense of what the source of the problem is.

If it was my mother and I had to make a quick decision about where to have her seen in the Philadelphia area, Penn would be at the top of my list, with Jefferson and Fox Chase as second choices at about the same level. Penn is likely to have several well respected specialists in all the different fields that may have to be involved in choosing a treatment for your mother. This is less likely to be the case when you are talking about community hospitals such as Lankenau (even though it is a teaching hospital).

Also, Penn may have easier access to treatments available only through clinical trials. I'm not sure how relevant that may be in this situation, but it could be relevant.

Good luck!

[Multibilly]

Re: Mom's situation and struggles

by Multibilly on Sat Aug 30, 2014 7:10 am

Sorry to hear about this news.

To be clear, metastatic adenocarcinoma is the single disease you are dealing with here, right? It's not a combination of multiple myeloma and metastatic adenocarcinoma, right?

Boris makes some great points about Penn. From what I've read, metastatic adenocarcinoma is quite serious and you want to seek out a best-in-class oncology team that can deal with this disease. Access to a clinical trial with a staff that is familiar with the trials could also potentially be a huge bonus.

I generally suggest to others not to advise their parents too much. But in this situation, I would be making a case to them to consider the best facility possible.