It's back


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11-08-09 07:55 AM
It's back

or maybe it never totally went away.

 I am now looking for options as doctors here dont really seem to know what would work and are not giving us much hope.

?milie was in the COG protocol ANBL 0532 (1 transplant), she had surgery to remove the tumors from the abdomen.

 They didnt remove what was in her chest (near heart/lungs).

 20 radiation sessions (I dont know the doses).

Then for ANBL 0032, the arm with Ch.14.18 and IL-2 was temporary closed. It reopened too late (about 1 month and half too late) for her. So she received only accutane.

 In July, the tumor fixed on mibg scan but not enough to be sure so we werent told anything. We had bone marrow aspiration almost 2 months later (there was vacations and a spike in the number of cases diagnosed, so it slowed down everything) where they found suspicious cells.

In September, repeat bone marrow aspiration. The catecholamines went up a little.

In October we had bone marrow aspiration results, it was clear. We also did scan, bone scan and mibg scan.

On the scan, they found 2 lymph nodes, but doctor said they were consistent with a benign virus. But they showed up on mibg.

We were told a bunch of things.  All of which were very difficult to hear as there seems to be no hope.  We refuse to accept that.

We are in Montr?al (Qu?bec, Canada).

It doesnt matter if we go south to US or move over seas to Europe. We want to find hope.

Our daughter is in the best shape she's ever been (gained 2kg since July and eats like a football team)

So far what was decided: we want a p-a-c (and not a picc-line).  We're looking if it is a good idea to have the lymph nodes removed (since they are near arteries in the neck and near bracchial plexus). Chemo should start on Nov 18th.  But if we go somewhere with "big" treatment and side-effects, we dont want to wait too long because she'll get tired etc.

 Please tell me there is somewhere someone that knows what to do.

 Thank you

11-23-09 12:51 PM
Re: It's back

so we asked our doctor to prepare ?milie's file.

 We picked Sloan-Kettering, Philadelphia and Toronto.  If we cant get any answers from them, we'll try St.Judes, Phoenix, Texas and Seattle.

 Port-a-cath was installed on Nov 17th. One lymph node was removed during this surgery.

 Cyclo+topo chemo started on Nov.18th.

It's still very hard for us to accept.  When we first saw the doctors, they said that all the treatments they could offer offered no guarantee for cure.  Then they say that treatment isnt curative...

11-23-09 01:29 PM
Re: It's back

Prayers for Emilie, and for you...for comfort, peace, and wisdom as you chose a treatment center and make your plan...