Question about prognosis after clear CTs.
 

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05-30-09 06:52 PM
Katie
Question about prognosis after clear CTs.
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My son was dx with Stage IV NB in the beginning of April. He has completed 3 rounds of chemo (ANBL0532). The biopsy sample was too crushed to determine MYCN amplification. His primary tumor was paraspinal on the left side, with mets to the marrow (50% inv), and 3 main places in the skull with various other tiny places, like the jaw.

We had CT scans done on Thurs of this week, and the result was that the tumors are gone, even the primary tumor. My question is, how common is that at this stage, and does it truly mean anything in the long run? I know this NB is a nasty beast, and that relapse is more common than not. As we have passed the news on to family members I have had difficulty celebrating with them. The marrow is also clear, it was so after the 2nd round. We harvested for stem cells and collected enough for 6 bags in one harvest.

Thank you to anyone who has anything to offer in the way of experience or research data, etc. I'm still new at this and trying to find places to read and learn from. 

-Katie

Mom to Rileigh (10) Joseph (8) and Garrett (2, Stage IV NB 4/09)

 

06-01-09 02:26 PM
dawnie
Re: Question about prognosis after clear CTs.
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Katie, I think that's great news! And while I can't speak specifically to the statistics of clear scans and marrow so soon after starting treatment, I did wish to offer my thoughts on your "difficulty celebrating" the news with family.  I had the same trouble.  It's not that you're not happy, thrilled even, it's just that clear scans don't make it "over" and family has a difficult time getting that because they aren't immersed in it as you are.  I was often accused of being pessimistic.  I wasn't, really, it's just that I had a child with a deadly disease, who even through treatment never had a HVA level within normal range, and I knew the odds.  Others didn't. People want to give you lots of advice too.  Here's what I suggest, even though it may sound cruel....sit your family and friends down.  Share with them the brutal statistics of high risk neuroblastoma. I would also take the time to explain to them that you guys will decide on treatment now and in the future, and to please refrain from forwarding you research, suggestions, and doctors phone numbers unless you specifically ask them to (this saves MUCH second guessing and frustration, I wish we had done it sooner). I hope this is helpful.  I think it's good news, but I do understand your being hesitant, it's totally understandable.  Cancer changes everything.  Adding your sweet boy and your family to our prayer list... do you have a care page or caring bridge site you'd be willing to share?

With prayers and hope,

06-01-09 04:10 PM
Katie
Re: Question about prognosis after clear CTs.
Reply

Dawn, thank you for your response.

Garrett does have a cp: carepages.com/pancakesfordinner.  I have read a little of your sons's caring pages as well. What a courageous and strong boy.

Our immediate family is aware of the statistics of this disease, we've been frank as have our doctors. We're blessed to have a strong support system. With most cancers, this would be great news. It's hard for people to understand that it's not so much with NB.

We have an appt with the oncos on Wed so I'm looking forward to hearing what they say about it. (We just recd a copy of the rad's report.)

Thank you, again, and take care.

-Katie