Need Help, please - Page 2

Adriana Mangus · 01-30-2008, 05:05 PM

Dear Sheila:

Thank you for asking about my husband. He's still at the rehab facility, he's doing a lot better, talks a lot more, walks little more than before-with help- he's able to get in and out of the car with little help.
He goes to the bathroom with assistance also. He's alert and understands everything. He gets frustrated because he cannot communicate but doc put him on an antidepressant and it has helped him a lot.

Doc said that it will take at least a year before is able to walk again, but he will regain the use of his legs and speech.
He's seeing a neuro-biofeedback doc and also a chiropractor. Both are helping him. Husband likes both of them.

Thank you so much for responding to my email. I have not made a decision as of yet. I have a little more time......:-) Stay well.

Much love to you.

Adriana Mangus · 01-30-2008, 05:06 PM

Thank you Julie...

Lolly · 01-30-2008, 05:09 PM

Adriana, I had/have mets to the axilla nodes, supraclavicular nodes and chest wall(skin). At the time I had radiation, it was just the right axilla we were targeting as the clavicular nodes were responding to Herceptin/Xeloda and the chest lesions hadn't showed up yet.

The axilla mass was very large and uncomfortable, and my rad onc wanted to shrink it and try to prevent spread into the chest wall so he also mapped out part of my right chest area.

I had 37 tx, 7 weeks of daily tx 5 days a week. Each session took about 20 mins, but of course they were zapping the tumors from various angels, each target area being zapped for maybe 15 seconds? Wasn't really timing it.

I was on Herceptin every 2 weeks and daily Xeloda throughout this time, and continued the same after finishing rads.

I was symptom free (didn't really consider myself NED) after finishing radiation from the end of October to the end of January, when several new axilla nodes started enlarging along with the tumor we radiated(some of it is scar tissue according to the onc) and have been in constant treatment for these and other new areas since.

So, although the axilla/chest radiation didn't stop spread in these local areas, I remain NED everywhere else. That is a victory, but don't know if that can be attributed to the radiation or Herceptin/chemo. I lean towards the systemic treatment keeping me NED elsewhere, and believe the radiation didn't help me for long enough to warrant the collateral damage of scar tissue, which is now causing problems with systemic treatments not being able to penetrate tissue.

<3 Lolly

Lolly · 01-30-2008, 05:54 PM

Adriana, as you can see I keep adding to my comments

I'm trying not to "advise" you one way or the other as only you can make this decision, based on your individual circumstances.

However I did want to add that I knew, going into radiation for this "localized" metastasis, that we were thinking "outside the box" as my onc put it, and that it was an unknown as to how well it would work to clear up the tumor. I felt at the time it was worth it, and want to stress that my regrets are only in hindsight. You know the old saying, hindsight is 20/20! Nodal metastasis is a difficult type of mets.

<3 Lolly