What have you done for relapse?
 

Posts


Write a Post
10-06-08 11:46 AM
dawnie
What have you done for relapse?
Reply

I could use some pointers before we have to make more decisions, so if some of you can point me in some different directions, I would appreciate it.

Where we are now:  Braeden relapsed in August.  We have done two cycles of irinitecan/temodar and just got CT scan results back.  There are two tumors, not one, and one of them is still growing rather than shrinking.  This week he will have surgery to remove them.  Since chemo doesn't appear to be working, our oncologist wants pathology right away to see what's going on.  MIBG treatment has always been on the table.  Because Braeden had OMS, an autoimmune disease caused by the NB, antibodies may be out (still trying to get a real answer on that).  So any other ideas I could research from those who have done some different things would be helpful.  Thanks!

10-09-08 06:56 AM
mdungan
Re: What have you done for relapse?
Reply

Dawn,

Well I don't know if I have any answers but I can help you with some pointers.  As I am sure you already know this is a pretty unique situation.  I can tell you that the resection is the first order of business and, yes, the pathology will hopefully shed light on the situation.  I would also guess that this should be potentially followed with radiation, if possible.  Where are the tumors?

The pointers that I have are more about process than specific recommendations.  I am a little unclear on how his OMS will effect his eligibility for various trials.  I just am not knowledgeable enough in that area.  I don't know what it will preclude Braeden from participating in and, secondly, given the fact that he has neuroblastoma associated with OMS, whether he would be considered high risk enough for trials such as MIBG or other phase 1 trials.  I am guessing that the pathology will help in that area.  Regardless, there are two things that you need to be aware of in making your decisions.

First, eleigibility for many trials is dependent upon the presence of measureable disease.  Once he has been resected (assuming he has no other disease) he will no longer qualify for many trials.  This is obviously good and bad.  He no longer has disease but he is also no longer eligible for many therapies that could potentially help to keep him in remission.  If this is the case you will be limited to drugs that are available off trial.  Many of these are chemotherapeutic in nature but there are some that may be appropriate.  Furthermore, it does come at an out of the pocket cost but there are labs that will test Braednes tumor to see what agents it is susceptible to. Finally, trials that he might be eligible for without measurable disease he may not be elibigible for given the OMS.  Antibodies and vaccine therapies come to mind although I would definitely ask the questions.

The second thing that should be considered by nearly everyone who has a child with relapsed disease is in regards to the management of toxicities.  There is a risk reward tradeoff with every therapy.  It is my opinion that, when choosing a particular relapse therapy, you should not only consider the toxicities of the therapy itself but also what happens next.  What happens if the therapy fails?  What happens if it succeeds?  What will happen next?  What will they be able to tolerate after this therapy if it fails?  How long will it be before they can start another therapy?  These questions are important to ask considering the response rates of many of these therapies.  With many response rates in the neighborhood of 30% (at best) I believe we have to strongly consider the cost.  You may also keep in mind that sometimes you can change the order in which you try many therapies to help reduce the risks associated with failed therapies.  For example, drugs X and Y may both work.  However, drug X may keep you from doing drug Y (either due to toxicities, timing, eligibility criteria, etc.)  However, if you do drug Y first you may be able to follow it with drug X.  Always keep this in mind and make sure to ask lots and lots of questions.

I hope this helps and doesn't just make your path more confusing.  Please feel free to write or cal anytime.

With hope,

Mark

10-09-08 08:52 PM
dawnie
Re: What have you done for relapse?
Reply

Mark, thank you for sharing your thoughts and information.  There is so much to consider and I'm sure it's always going to be hard not to second guess ourselves.  Braeden's tumors reappeared in the same spot as his original tumor, the left adrenal gland.  He actually had surgery yesterday, and while he lost his left kidney, they were able to acheive a total resection.  That was really more than we hoped, since chemo did not shrink the tumors away from his spine, aorta, kidney and spleen as it did the last time.  We have already been in contact with U of M and are planning to proceed with MIBG after he recovers from surgery.  Fortunately we had a plan and a plan b at the onset, but I still think it's a good idea to investigate other possibilities.  As for the OMS, we are getting used to being the oddball case by now, as it's rarely seen in stage III NB, let alone the high risk kids.  In terms of it precluding him from trials, it is more a case of us fearing any treatment that triggers an immune response (like antibodies or vaccines) will cause a relapse of the OMS.  That is the main concern as I have understood it.  We tried to get some answers about this at the conference but didn't get very far.  In any case, I thank you for taking the time to give me some things we need to consider.  As scary as this is, it would be so much scarier without so many like you who are willing to help!