Progression after radiation


(Mark) #1

Our 9 month old son was diagnosed Stage 4 in May 2018. He had primary tumor in the adrenal gland and secondary tumors in jaw, vertibrae, liver and probably other places I don’t recall. It’s mycn amplified and mibg non-avid.

We’re at Seattle Children’s on COG. The chemo went super well. Shrunk the main tumors effectively for surgery which removed all of the primary tumor and after the next round (5?) there was no signs of cancer on the PET scans/bone marrow biopsies. Onto the BM transplants. He cruised through those in record time with very minor side effects and (I think) had scans again that showed no sign of cancer prior to radiation.

Radiation at UW went fine. He just had it at the primary site rather than whole body. That finished approx a week ago and he’s just been rescanned at Children’s.

The PET scan showed a 7mm tumor in his femur and apparently his liver is showing brighter than before. We’re waiting to hear the results of the BM biopsy.

It honestly felt like we were going to get away with this. I think we’re were up to about 75% survival chances after the success of the previous treatments and yet to have this confirmed but I’m worried we just got dumped into the 1% survival chances bucket. I’m just shell-shocked.

Apparently the preliminary plan is to give him different chemo drugs with his immunotherapy that was planned to start next week.

I hadn’t previously looked at alternative treatment because they seemed to have a handle on it and I still trust them with it but I guess I just want to go into the next meetings informed and knowing my options better. I don’t think Sloane is financially viable at all but I’m a UK (and EU for now) citizen so in theory (I think) we could move to Europe and get treatment there if that would help.

Any thoughts or advice appreciated, thanks
Mark and family

edit> Just heard back on the BM biopsy. One side is clear, one side is clear of NB but includes precursor cells (gangliosides?). They’re going to postpone immunotherapy and get biopsy results from the 7mm lesion in his femur and then decide what to do after that.


(jindrich daniel) #2

Dear Mark, so sorry to hear that…
There are still chances to beat it!
Check out topics here called DFMO, there are studies provided in USA under direction of Helen Devos Children hospital in Grand Rapids (MI), Dr. Giselle Sholler is the person to speak with. I think that COG is also involved in this studies but not sure about.
Our daughter starts tomorrow antibody here in Austria and underwent european protocoll SIOPEN which seems to be a bit better in outcomes, but maintance and second-line-therapy seems to be advanced in US.
All the best!
Jindrich


(Sam Saffron) #3

This must feel terrible, however I would not rush here and guess prognosis, these days even refractory has a real chance of being beaten.

It is also important to remember that immunotherapy often can shrink tumors.

I would recommend asking if MIBG therapy makes sense, asking if LUDO trial on SIOPEN makes sense and so on. Also given how complex this is maybe contact Spain they have access to hu3f8 which is a more potent immunotherapy drug than CH14:18


(Mark) #4

Thanks. He’s MIBG non-avid so that’s not an option for us unfortunately. I spoke to our fellow on Friday but I haven’t spoken to our attending (Park) yet. Our fellow mentioned that they might mix in some chemo with the immunotherapy or do a round of “rescue” (?) chemotherapy before going to immunotherapy. I’m guessing their will be a committee decision on that.

I will ask Dr Park about hu3f8 on Wednesday and see if she thinks it worth us travelling to get. What’s the reason that COG don’t offer it? Insurance reasons or they don’t believe in it? MSK won’t make it available?

I’ll be sure to ask about LUDO too. It seems from the info I found on LUDO that the UK/EU has more phase 1/2 trials going on at the moment?

Thanks too to Jindrich, I’ll ask about DFMO but from reading the main link on this forum it appears COG are not currently a believer in it. I feel like I have to trust my doctors. They have 30+ years of NB research behind them and I don’t. I can’t confidently second guess them. If they say it can’t do harm then it might be worth just spending the money to cover the extra bases though.


(Sam Saffron) #5

COG in particular CHOP have a high dose DFMO + chemo trial

Hu3F8 is now in trial in quite a few hospitals, most likely you will hear it is just in phase 2 and not a proven treatment yet which is true, but there is plenty of evidence it is more potent


(Mark) #6

The original DFMO trial was for patients in full remission right? This trial is for patients still requiring chemo?


(Sam Saffron) #7

It’s a very different trial I was thinking about

but it appears they are no longer recruiting


(Mark) #8

So. The femur biopsy came back negative. Some kind of miracle. We’re pretty floored. As are the doc’s who’ve never seen this happen apparently. There are neuropil cells but no cancer.

They’re giving us the option to mix in chemo with immunotherapy or not. We think we’re going to do it since he’s been super resilient with the chemo so far and this last 7-10 days has been so utterly terrifying we feel like we have to chase down any possibility of it still being in there hiding somewhere.

Thanks for all the support everyone. Will update when we know more.