Sue Charen

Update: Friday Appointment

Update. Well, now we are back in the time of more news and updates. Sue and I went in to Hopkins on Friday for a followup appointment. First, there did not appear to be any leukemic cells floating in Sue’s cerebrospinal fluid which is a good sign. Second, the drug that is a monoclonal antibody immunotherapy which was given when she was in the hospital will continue to be given to her periodically going forward including sometimes through an LP (lumbar puncture), so it gets into her cerebrospinal fluid directly.

We are still waiting to hear back as to whether the insurance OKs the proton beam therapy at UPenn. Meanwhile Sue is recovering from the chemo at home and is generally feeling better with some fatigue and back pain. We go in on Thursday for the next immunotherapy treatment which is usually long and tedious and will likely take the whole day there. Thanks again for all the well wishes.

Resting Up from the Chemo

We are back home after a week at the hospital. Except for the first day when Sue received 4 types of chemo (including her daily pill), she felt pretty good generally for being in the hospital. And it was wonderful getting a dozen visitors over the weekend. At one point we commandeered a conference room for a card game with friends.

Finally, on Tuesday afternoon, they assessed her as having cleared enough of the chemo to be discharged. We hopped in the car for a ride home.

Yesterday and today have mainly been easy with lots of rest and napping. Friday we go back for an appointment and to figure out further plans. At this point, it looks like consolidation treatment with radiation therapy in January.

We will hear about some of the new treatments that were presented at the ASH conference earlier this week and whether they might be helpful for Sue.

Where We Are

Sue and I were happy to hear about how the leukemic tumor had shrunk so quickly (for last post click here). And we started looking into getting Sue targeted radiation therapy in the place where the tumor showed up again. We went to UPenn Hospital for a second opinion where there is a proton therapy program. We were impressed that the with the same efficacy, there was significantly better safety in that the radiation could be be kept to the areas intended. Either way, proton or photon (X-Ray), we had been told that radiation was a needed treatment.

Unfortunately, getting the proton therapy takes longer to set up, quite often because of insurance plan delays. So, just in case, Sue went in to get an MRI to see what was going on and if she had the time to delay.

Bad news.

The MRI brain scan this Wednesday showed that the tumor had come back again. Immediately, Sue was admitted for inpatient chemotherapy similar to three and a half years ago here at Johns Hopkins. Right now, Sue is resting in her bed after a rough day of chemo on Thursday. It started with a lumbar puncture (LP) to both get a spinal fluid sample and to put in chemo. Then Sue received a new treatment that is targeted using immunotherapy that is supposed to help her immune system fight the tumor, Rituxan (rituximab). Then she got high dose methotrexate overnight. Sue will stay in the hospital until the methotrexate is out of her system, sometime in the next few days.

So... where are we?

Obviously, this is a very serious development. However, we are hopeful based on a few things including brand new treatments. For example, a brand new drug was just approved by the FDA this last same Wednesday that may revolutionize the treatment of all ALL (acute lymphocytic leukemia) patients. Plus the new treatment that Sue is getting on top of the chemo, radiation treatment, ongoing Iclusig (ponatinib) treatment and top quality care gives us hope.

We are planning on letting Sue recover from the chemo before the radiation treatment that should be in January. It will take about three weeks of one hour a day outpatient treatments. And then Sue’s doctor and we will work on how to maintain Sue’s ongoing health care. It’s been a tough and scary two months. But the love and support from family and friends has made it much easier. Thanks. More to follow soon.