Question for freshair

Since we are both dealing with brain mets, I was wondering how your doctor looked at your recurrence status?  My doctor doesn't know how to answer my question on whether I have recurred once or twice now.  I'm dealing with the ovarian recurrence with Topotecan and am looking into gamma knife for the newly diagnosed temperal lobe tumor this week.  So am I dealing with 2 separate recurrences or are they considered separated since they are in different areas of the body?  Not that it matters much because we have to go about treatment.  Just wondering if you had discussed this at all?

Christa

[freshair]

Hi Christa,
I was wondering which doctor are you talking about. The neurosurgeon or the oncologist?

It's so separate. The neurosurgeon is always taking care of my brain and the oncologist—my body but on top of what's going on with the brain. That's the way medicine is today--very specialized.

My neurosurgeon has told me in the past that when you have to do chemo you do it. I have always been worried that chemo will mess my immune system so as to inhibit the immune system in the brain. But what can we do? We have to do chemo to keep it down in our bodies and also so as no more new cancer goes into the brain.

My gyn/onconcologist and oncologist felt I should have done whole brain radiation and my neurosurgeon advised against it.

So it's difficult to have gamma knife while on topotecan. I think having both doctors talking to each other  would be of benefit to you. Yes, unfortunately you are dealing with two separate recurrences. I feel for you. When I was going thru my brain surgeries and gamma knife I was not on chemo at the time.

Please let me know how it goes with your neurosurgeon--Helen

[Christa54]

Helen, we'll know more this week on whether they chose to continue the Topotecan along with the gamma knife, if that is one of my options.  I was asking my gyn onco about the recurrence status of my disease and I just don't think he'd ever run into it before so he didn't know how to answer my question.

As far as the whole brain radiation, as you can see it didn't work for me since I now have new tumor growth in the temporal lobe area.  I wonder what will happen as new areas take seed and develop into more brain lesions.  I had my first gamma knife at Mayo but now they are no longer part of my insurance network so I'll be receiving tx in Omaha.  I hope to be able bring the Mayo doctor into consultation with the Omaha doctors.

In the meantime, my neuro symptoms are worsening to the point where I am having balance problems and have fallen a couple of times.  It seems so wrong to be dealing with these issues in your prime of life but it is what it is.

I'll let you know what is decided this week.  Thanks for your support, Helen.

[Christa54]