Scan Results: Relapse Part II

Hi all-

Well, we got some more bad news today. Hans's MIBG scan (Meta-iodobenzylguanidine scintiscan) showed two new spots indicating neuroblastoma tumor. One is on his left femur (upper leg bone) and one is on top of his liver just underneath the diaphram. Last week he only received the CT scan and the MIBG scan (No bone scan or bone marrow tests). The CT scan was clean. This scan mainly images soft tissue and unfortunately doesn't image the top of the liver where he had the spot. The good news is that whatever is on top of the liver has not spread elsewhere in the abdomen or it most likely would have been picked up on the CT. They didn't do the bone scan because the MIBG is more sensitive and would pick up anything present on the bone scan. They didn't do the bone marrow because if it shows up on the MIBG, its probably in the marrow.

The real bummer about the results is that right now we can't do the 3F8 study up in New York at Memorial Sloan-Kettering. This is the study that uses antibodies that specifically attack reappearing neuroblastoma cells and seem to hold some promise in preventing relapse. The issue is that one has to be 'clean' in order to start the treatment. If you have tumor present like Hans, its really not an option (Dr. Russell, Lara, and I will confirm this with New York). This is something we really want to do, but once again we have to get rid of the tumor that has reappeared. It's still a future option, but not until we take care of what's on our plate.

So now we're kind of back to square-one. There is no cure per se for relapse, only a boatload of options to choose off the 'menu' of 'hopefully this works' treatments. That's not to say that neuroblastoma kids don't pull through after relapsing, just that there isn't a standard treatment protocal like at initial diagnosis. When Hans initially relapsed with severe tumor in his right arm, we went a pretty aggressive route: Put in another permanent catheter to receive aggressive IV chemotherapy and 12days of radiation to the arm. This worked great for the arm (the arm was completely separated from the shoulder, and now he throws rocks and plays the Wii like nothing ever happened), but it obviously didn't work systemically. Dr. Russell thinks maybe the radiation did most of the healing, but maybe the chemotherapy wasn't the complete answer. The chemo probably did some good, because he doesn't have tumor all over, but it didn't completely keep the neuroblastoma at bay.

Dr. Russell gave us her approximate 'top-five' list of next, viable treatment options. Two of the options are open clinical trials and three of the options are treatments out of the trial phase. One of the clinical trial options, Lara and I both crossed off the list because both we and Dr. Russell haven't seen great results after 3 years of data. The other clinal trial option has only been ongoing for 6 months and there really isn't any data to suggest successful/unsuccessful outcomes either way. We probably aren't doing this one either, but it's certainly a tough call...just because there isn't data, it doesn't mean it won't work. Wouldn't it be a shame to find out this was the cure?! At this point, though, Hans has future options so we will try things right now which have data to back up success.

The treatment option we are currently leaning towards is MIGB Therapy (yes, this is related to the MIGB scan that you are all familiar with). Basically, when one receives an MIGB scan (Meta-iodobenzylguanidine scintiscan), he/she is injected with a radioactive iodine isotope which neuroblastoma cells preferentially uptake. Normal healthy cells do not uptake this isotope. After injection of a small amount of this iodine isotope, the MIGB scan can detect neuroblastoma tumor areas in the full-body. The idea behind MIGB Therapy is that if you inject a large dose of this radioactive iodine isotope, and it is subsequently absorbed by the neuroblastoma tumor cells, it has a therapeutic effect (think targeted radiation). Topotecan/Cytoxin+radiation therapy (we just tried this) and MIBG Therapy are two of the most documented, effective treatments for relapse neuroblastoma. We tried one of them and it didn't work, so let's go for the next one.

There are only two institutions/hospitals in the US that currently offer MIGB treatment: The University of California-San Francisco Childrens Hospital, and Childrens Hospital of Philadelphia. Texas Children's and Seattle are about a year away. Our plan is to go to UCSF for Hans's treatment. 1) We are closer to family and friends, and 2) Katherine Matthay, MD (UCSF) is the expert on this treatment. Dr. Matthay was also the principle investigator on the study that led to the standard treatment protocal that all hospitals throughout the United States now use for treating initial neuroblastoma diagnoses. Dr. Russell knows Dr. Matthay very well and is helping us collaborate with UCSF staff. Lara and I have also previously spoken with Dr. Matthay via email and she is very receptive to our situation.

MIBG Therapy is very, very lame. There are more-harsh treatments, but this is up there. The reason why there are only two hospitals that offer this treatment is that it takes special 'radioactive-safe' facilities. Basically, this means that when the child is injected with the high-dose radioactive iodine isotope, he/she poses a risk to others and the environment around them. The hospital treatment facility essentially has lead walls used as protection, and the staff has to be trained specifically for these risks. Generally, a typical stay for Hans would be 10-14 days. Three of those days would be in a sort of isolation. While he is 'radioactive' (sorry...don't know how else to put it), family can see him, but not touch him. When I say 'see' him, I mean kind of like how in the old days, after you had a baby, you looked through the window in the nursery and said..."Oh isn't he cute?!!". That kind of seeing your child. Sucks!! Usually they also like to collect more stem cells (like he did for bone marrow transplant) because occasionally they need this for bone marrow recovery. Dr. Russell thinks this shouldn't be a problem for Hans.

Please know we aren't taking this course of action lightly. Hans still sleeps with us because of his adrenal issues. Every hospital stay Hans has ever had (now over 150 nights), either Lara or I has slept with him in his hospital bed. I can't imagine how to explain to him 'radiation safety' and that we can't be with him, and touch him, and hold him for a few days if this is what we decide to do.

Lara and I are very receptive to Hans. If we think he can't handle a certain treatment, we'll stop. So far Hans is cool. Right now he is so excited about waking up and going to kindergarden. When he gets home from school he wants to watch cartoons and eat and play video games with us 'all together'. He's a normal little kid (except for the baldness and 3-year old body) and he feels great!

Dr. Russell will be calling us tomorrow with info from Dr. Matthay. We'll let you know what's up.

Keep the prayers and good vibes coming.

Tons of love

Weberlings