All clear but is it?
 

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10-10-08 10:53 AM
Eileen
All clear but is it?
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Hello anyone and everyone...

I have written a few times before about my son Wyatt...

Briefly, he was diagnosed with Stage 4 NMyc amplified NB two months ago at 4 months of age.  He had the tumor removed, but found nb in his bone marrow.  He had a ct scan done and nothing was in his soft tissue... he had a MIBG done and it came out negative, nothing showed up in it(supposedly it doesn't work on all kids).  We have gone through three rounds of chemo now and had the stem cell harvest done.  Just before the third round of chemo last week we had another CT scan and a bone marrow biopsy done.  Because of his bones getting soft with the chemo they could only get the bone marrow from one side, but they said it was good enough.  We got most of the results back and all was clear.  Yesterday they told us that there was no NMyc gene found... they are next (I think) looking for any residual amount found. 

Our question is... if there is nothing found... they still want to go through the next three rounds of chemo and the BMT, and then radiation.  Does anyone know if this is the same protocal at other institutions?  We are at the U of M minnesota.  We just wonder if the chemo and BMT are needed or could we just go to the radiation or something else?  Wyatt is as healthy as can be (besides the cancer), and has no symtoms... we can't help but second guess the doctors.  We just don't want to be putting him through all of this if not needed.

Does anyone have any suggestions of other procedures or anything at all? Any questions we chould be asking the doctors? We are elated that nothing was found, but confused at what should be the next step. 

Thanks for your suggestions ahead of time,

Eileen 

10-10-08 04:46 PM
Donna Ludwinski
Re: All clear but is it?
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Hi Eileen,

One of the most insidious things about NB is that it is hard to truly getrid of--every single cell. A small amount of NB far below detectionlimits can grow back as relapsed disease, which is exactly why it is soaggressively treated. Even the bone marrow tests done to detect microscopicamounts of NB can be like looking for a needle in a hay stack--the poke in thatone spot may be clean, but a few NB cells could be lurking elsewhere.

There are subsets of high-risk disease as well. The fact that Wyatt has MYCNamplified NB at diagnosis means that his disease is aggressive, and somestudies have shown that MYCN-amp kids have even more benefit from stem celltransplant. (This studyrefers to MYCN amp kids over 12 months).

A few hospitals do things differently. Memorial Sloan Kettering in NYC isthe only hospital that does not do transplant anymore for high-risk NB kids(since 2004) and gives the children mouse antibodies called 3F8 instead afterhigh-dose chemo. In Texasafter transplant some kids are given multiple vaccine shots against NB.

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10-10-08 11:29 PM
Jennifer Click
Re: All clear but is it?
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Eileen,

It seems that there is some confusion among as to whether or not Wyatt is NMYC amplified.

You have asked if other institutions would offer the same protocol.  COG institutions are all running trials that use at least one BMT.  Donna mentioned that Memorial Sloan-Kettering in New York does not use transplant for any high-risk NB. This is true and they are especially concerned with limiting toxic treatments for young babies because the long-term effects of chemo can be quite devastating.  So you may wish to contact MSK.  Especially if Wyatt has not had surgery, Dr. LaQuaglia could probably remove the tumor at this point (after 3 rounds of chemo, which is when they generally prefer to do surgery).  You can learn more about Sloan-Kettering's NB team and their approach to treatment on the MSKCC website http://www.mskcc.org/mskcc/html/2868.cfm

The NB team at MSK treats more than 80 NB patients per year and families travel there from all over the country (and world) for NB treatment.  They have a very good set-up, the Ronald McDonald House is only 5 blocks from the hospital, and both are located in a very safe area in New York City.  There are many great organizations that work together to help families through treatment and I would be happy to talk with you about them if you want to get a second opinion there.

Jennifer Click (Mom of Carolyn: dx 1/03, NED since 7/03, treated on N8 at MSKCC)

10-11-08 09:38 AM
Donna Ludwinski
Re: All clear but is it?
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 Hi Eileen,

Jennifer added more important points--I also forgot to mention that MSK (Sloan Kettering in NYC) has reduced the number of induction chemo cycles to 5 (the protocol Wyatt is on, as well as most other protocols use 6 cycles of chemo or more). You mentioned Wyatt's tumor was removed, so hopefully he will not need more surgery.

I think MYCN amplification can only be determined when there is tumor samples available--if Wyatt was clear of disease (bone marrow biopsy) they have no tumor cells to test for MYCN amplification. Very rarely this can change--the literature reported one case that changed from NON-amplified to amplified at relapse. I never heard of amplified changing to NON-amplified.

There is a family in Minneapolis with a 15 year old who weathered high-risk treatment as an infant, and she is doing very well with minimal late effect issues. I will try to put you in touch with this wonderful family!

Prayers for Wyatt's health and strength!