Has anyone got any feed back on the effectiveness and side effects of the European protocol vs the American protocol for infant neuroblastoma
My 23 month daughter Eliza has just been diagnosed and we can either stick with the European model of front line chemo or go into the 50/50 pot and maybe the American n7 version . Any feedback gratefully appreciated . We have to decide tomorrow (Friday )morning to decide. Thank you for your help
OK just to clarify stuff cause this is probably quite new to you.
I think you are treated under SIOPEN under the SIOPEN study. The study posits all sorts of questions and comes up with answers about what is most effective.
Some examples would be:
- They recently found that adding IL2 to immunotherapy does not improve survival.
- They found that BuMel transplant regimen was more effective than CEM.
- They found that GCSF heavily reduced complications during induction chemo and added it to the protocol.
Historically, as soon as they find out that one arm is proven better than the other, they terminate experiment giving everyone the superior treatment.
Initially, I was very confused by your question cause I though you are being asked to choose between 2 protocols (COG vs SIOPEN). That would be a terrible nightmare of a choice not many could help you with.
However, in this case, you are just being asked to participate in an experiment that will hopefully improve treatment for all children.
The modified N7 protocol for induction is a 21 day cycle. The standard SIOPEN one (Rapid COJEC) is a 10 day cycle and is quite intense, your counts bottom out just as you enter you next cycle.
Recently, some papers have raised the question of the real need for such an aggressive induction chemo.
An example is:
SIOPEN are trying to answer the questions:
- Is it necessary to put patients under the stress of a rapid chemo regimen?
- Does rapid COJEC lead to better overall survival than the COG modified N7 induction (COGs protocol is heavily based off Memorial Sloan Kettering’s protocol)
Nobody really has the answer here yet. With the huge complexity of high risk NB treatment there is a lot of “interplay” between drugs. This is why it is critical to keep every parameter the same in the treatment when answering these questions. (same transplant, radiation, immunotherapy)
So back to your original question. Nobody really has an answer. If you are in the test arm that gets the N7 based induction you are going to be in treatment for longer, but it will be less intense. You will have more of a chance to recover between cycles.
Long term, we don’t know what this all means, but some initial research is pointing out that Rapid COJEC is not causing a measurable improvement in survival.
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One thing I did just think about that you must ask your oncology team, what impact will this decision have on the rest of your treatment?
For example, if you refuse to participate in this trial?
- Will it make it more complicated for you to get access to immunotherapy?
- Will it preclude you in taking part in the long term infusion trial for immunotherapy antibody?
This would make an enormous amount of difference to whatever you decide.
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Hi sam thanks for your help. We can fir some reason join the trail on paper but still chose the European model and get the free immunotherapy later on. With regards to the side effects being sslightky worose on average using one over the other is this common knowledge or proven by any research. It does seem a bit more intense and it would certainly be a reason to join the trail (as a well as helping the scientific world and future patients )
Hi Robin,
Curious as to what you decided. Yeah it is pretty common knowledge that a more rapid chemo schedule is more harsh than a less rapid one. The drugs are very harsh.
Had to have emergency chemo in the end as vital organs being compromised by growth. So will be on European rapid cojec but have starred with slightly different combinations as first does so we’ll have to call this on 'eliza protocol".
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Hello
We were given trial option and took it and got assigned to modified N7. Doctors in our hospital werent sure what to expect as we were first patients to be randomised to it. I remember saying to oncologist if chemo clears tumours can we skip surgery and radiation parts but he assured me its a hard tumour and there is always some tumour left to remove. after 5 cycles the tumours were gone and she was showing not evidence of disease. The did surgery keyhole to take the adrenal gland tumour was attached to and parts of this were sent for research. we will still go ahead with radiation and then be randomised for IL2 or not.
My daughter was stage 4 high risk but she did not have in bones and bone marrow at start just on adrenal and lymph node in neck. She did start of differently that most other stage 4 HR. We are at stem cell transplant now and she is in isolation. I was prepared for the worst but it has not been like the stories I have read so far, she is only one week post transplant and beginning to go down now but has been really well up until now. However we are so lucky in the fact she came into SCT clear of disease and as healthy as could be. I hope that Eliza’s protocol works and that she is much improved now.
Kindest Regards
Jolene and Una
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Hi my daughter started n7 trial about a month ago now we’re at home now till 3rd lot of induction chemo on day 42 x