As noted in last week’s blog, I had been told from the start that there were only 2 tumors. So when I had an MRI, I had expected that all would be well, after further chemo for 4 months, one week each month. On Thursday, when I met Dr. Silverman and Dr. Chi, I was shocked to learn that there is a third tumor that appeared on the MRI. They don’t know 100% if what they see is actually a tumor or some kind of reaction from the radiation, but Dr. Chi said that after conferring with the 2 of them and a brain surgeon (Dr. Golfinos is on vacation) they said.But from what they have interpreted from the MRI there is a 90+% chance that the image is indeed a tumor, not an effect from radiation. So NYU offered 2 options:
- Having a biopsy to confirm if the image is a tumor or just swelling. The plus to the biopsy is that they will know what is being treated and it may open more options to get it right. The downside is that this will entail going back to the hospital for surgery to open my skull again to access the tumor.
- Assuming no biopsy, they propose high-level radiation targeting the “tumor” and complementing it with immunotherapy or enrollment in another trial program.I read in the NY Times about immunotherapy and the association of Sloan Kettering with such research. They said that this could mean going in for treatment every 2-3 weeks for up to a year, but there are few if any side effects from this treatment.
I was able thanks to some wonderful people with connections (Bruce Culliney via Tim Williams, Beth Malitz, MesruhTurkeku via Tony Frankenberg, Eli Diamone via Disco) to get an appointment in less than 24 hours with Dr. Lisa De Angelis, the Chair of Neurology at Memorial Sloan-Kettering Cancer Center (MSKCC) to give me a second opinion about the best way forward. I had other referrals for other doctors and institutions, but in the end MSKCC has a world-class reputation and Dr. DeAngelis is hugely respected. So Tuesday morning at 8 AM, I was at MSKCC, first being examined by Dr. YoshieUmamura and then Dr. DeAngelis herself – I felt like I had won the lottery to see VP Biden and President Obama for an hour each! They were both amazing in the time they spent with me, their knowledge and their compassion. One thing that they both said is that no one knows why or how these tumors occur and very unlikely related to anything I did or did not do, nor to my genetics.
The problem was that the day before I had to fight with NYU to get my records to them on time. Antonio went personally to pick up the images, but in the end they only gave him the pathology slides, not the MRIs, so the MSKCC team was working with less than full knowledge, but at least they had the reports from the doctors, if not the images themselves. After the appointment I again had to fight to get the images over and once again, they only sent 2 sets of the 3 that were needed. The 3rd set will be sent tomorrow to give the full picture.
If you want more detail, read the next paras, but if too much skip ahead to the paragraph that starts “Back to Dr. DeAngelis.”
This was the exchange from the start to get my records:
Hi Regina (in Dr. Chi’s office),
Thanks for talking with me. I can get an appointment with Dr. Lisa DeAngelis tomorrow at 8AM, but need to have my records in her office today. Here is what is needed:
If they are not there today, I will need to wait until at least August 16 since she will be away on vacation. Can you URGENTLY arrange to fax the records to 212-717-3296. If there are any questions, you can call Dr. DeAngelis’s office at 212-639-7123. I do need to pick up the various slides to carry with me. Can I come either myself or send someone to do that later today? Where should I come? If not me, I will let you know who will do this. Many thanks for your urgent help!
Antonio went to pick up the images, though as I noted, these turned out to be incomplete. When I called about the lack of the images after my appointment, first of all it took me nearly an hour before Regina returned my call, then she told me that she didn’t even bother to look at the link I sent so she didn’t know what I wanted. Then she told me that it was MY responsibility to run around to pick all I needed up and gave me the phone of the person I should call. I called, but got a message that that person was out of the office. So I called Regina again and reluctantly, she agreed to call to find out what I needed to do.
Here is her email:
I made a few phone calls and was able to arrange for you to pick up your Imaging CD from: 310 E. 22nd Street, between 1st and 2nd Ave. Please call 212-263-7108 before picking up the CDs to make sure they are ready. I hope this is of help to you.
I picked up the CD and took it personally to MSKCC – this took well over an hour. When I returned home, there was a call for me from Sloan saying the images were incomplete – there were only 2 image sets: one pre-surgery, and one from last week, but not the post-surgery images from April 12. I again called Regina who told me she sent a follow-up email, which I found as follows:
I am told for the MRI done 4/12 (only) @ Tisch Hospital, you will need to pick that CD up from David Garcia…560 1st Avenue, Tisch Elevators to the 2nd floor.
I wrote back to her:
Frankly, I am exhausted and have been running around since 7:15 this morning. My blood pressure is low and I feel like I have been fighting the NYU bureaucracy since yesterday. I just called David who is not there. His colleague said that I would need to fax the info over to them, but I don’t have a fax. I need your help! The images need to be sent to Dr. Lisa DeAngelis, MSKCC Department of Neurology. If these can be either overnighted or sent by messenger, I would be very appreciative, but I cannot go pick them up and deliver them myself after so much running around today and I have more doctor’s appointments tomorrow. Please let me know when these are being sent.
So far, no response!
I will be at NYU tomorrow and will see Dr. Chi’s office to see what has been done! It is unacceptable and the first time I have had such an encounter with NYU staff. I have no more patience!
Back to Dr. DeAngelis: I was accompanied by Antonio and Susan Locke, both of whom have been there for my appointments from the start and both of whom are amazing in helping me through this process. Dr. DeAngelistold me that she feels that no biopsy is needed, though she won’t say so fully until she examines the MRIs that are still not in her office. And she suggested that radiation may not be the way to go, but just immunotherapy or perhaps immunotherapy or chemo with Avastin, a cancer medicine that interferes with the growth and spread of cancer cells in the body. Avastin is used to treat a certain type of brain tumor and other types of cancers. It must be given along with chemotherapy.
So now my big decisions are the following moving forward:
- Do I stay with my current NYU team or move to MSKCC? I really liked the approach of Drs. DeAngelis and Umemura, but my entire history is with NYU Langone, so wonder if it is worth the move. I meet with Dr. Silverman tomorrow and will discuss more before deciding and may even take a few more days to weigh pros and cons. One of the big pros to move to Dr. DeAngelis is that she and Dr. Umemura are amazingly compassionate and when I cried, for example, both offered big hugs and tissues – sounds small, but is actually huge in terms of comfort with this crazy situation I find myself in!
- With either hospital, do I do immunotherapy only? Chemo with Avastin? Add radiation or not?
I will continue with acupuncture, but after asking about other complementary therapies, I think I will skip these – too much to do too much!
I also asked about likelihood of recurrence and truth is nobody can say for sure, so “it is what it is” and I move forward!