A Better Day...

Yesterday was a relief, to say the least. Mom started taking the Decadron (steroid) three times per day instead of two and this has made all the difference. Of course, reading about this through message boards, etc... you learn a lot AFTER the fact and apparently this is a fairly common issue among GBM patients. Steroid dependence is tricky with cancer treatment and premature withdrawal can be excruciatingly difficult.
So, Mama Marian was in rare form last night, as I have not seen her in months. Of course, I left this morning to come back to Virginia! However, Jeff came in late last night from South Carolina and is spending the weekend. McLean Home Health came today to assess mom and have referred her back to physical therapy. It looks like she won't need someone around the clock as it appeared just yesterday morning! And such is the roller coaster that everyone tells us about...
Hopefully, there will be no more seizures since the Keppra was increased and the swelling in her brain from the surgery and treatments is under control. Of course, the side effects are less than desirable. Exhaustion, hair loss, facial and midline swelling, and water retention are all suddenly very relative, however. Having Mama Marian back, shouting demands for white wine and "brakes" on her walker are an absolute delight!

CT Scan/Neurosurgeon Consult

Yesterday was perhaps the busiest day that did not involve leaving the house (thank you, thank you to friends who brought food and themselves to visit!) We had three hundred phone calls to make and three hundred more that came in regarding meds, bills, appointments, etc... and in the midst of it all, mom had another focal seizure after not having one in several days. We contacted the doctors, had some of her meds changed, a CT scan ordered for this morning, and an appointment scheduled with her neurosurgeon/neurologist to follow up. Mama Marian has been taking some treacherous dives for the remote, the shampoo, etc... that have landed her on the floor and bruised up and down her right side. She's been experiencing a lot of difficulty with fine motor skills and coordination on her right side, which has led us to find a home health nurse during the days when dad isn't at home.

So, at 7:30 this morning we went with mom to UCONN for her CT scan. After battling with rush hour traffic and wheelchairs, we finished the scan, had breakfast in our beloved UCONN cafeteria we know so well) and went to see Dr. Senatus, her neurosurgeon, at 10am.

Dr. Senatus showed us Mama Marian's CT scan and pointed out the part of the brain that controls her movement on the right side. It had been assaulted by this mass of cloudy stuff that is apparently edema, fluid surrounding the tumor. And, yes, we asked the same question again... is it the tumor growing or is it radiation necrosis, a lovely oozing side effect of the Tomotherapy she underwent for six weeks this past December-January? By the way, that is so aptly named the "eloquent cortex". Dr. Senatus said that, as the radiation and chemo oncologists have said AND the Swedish doc and Waglie Fellow at Dana Farber, we don't know... and it's impossible for us to know with these scans. So, he consulted with the head of his department and they have recommended a CT/PET scan that will take it a step further to help guide her treatment. This involves injecting her with a radionuclide that cancerous cells uptake and can be monitored on the imaging.

If we find out that the "area of enhancement" has increased we may look at going back in for surgery to biopsy and resection the tumor. It would not have to be another awake craniotomy like before, but may involve implanting some kind of wafer or directly applying chemotherapy or radiation to the area. We also asked about Avastin, the drug mentioned at Dana-Farber, and Dr. Senatus promised to talk with some of his connections there, at Harvard, and at Columbia for more information on what might be the best route. Again, we won't know what we're doing or where we're going until we have MORE information.

Dr. Senatus informed us of his work with a doctor onsite who is developing a transgenerated tumor vaccine. He is banking tumor tissue so, of course, mom asked about making a deposit into the bank once we knew she might have to go through surgery again! We shall see...

The CT/PET scan is scheduled for next Thursday at 1pm and then a follow-up appointment with Dr. Senatus that Friday to talk about options for treatment.

Oh, before I go, mom wanted me to let everyone know that she is having a difficult time typing and so has been slow to get back to people via email, etc... She and ALL of us are so, so, so appreciative of all the amazing generosity and genuine kindness of everyone around us over these past few months. Thank you, thank you! :)

Dana-Farber Consult

Dad and I took Mama Marian all the way to Bean Town yesterday for a 1pm consult with Dr. Jan Drappatz, M.D., with the Center for Neuro-Oncology at the Dana-Farber Cancer Institute.  We met with him and Dr. Wagle, a Clinical Fellow, and they reviewed mom's MRI from February 9th. They came to a similar conclusion as Dr. Hegde and Dr. Dowsett at UCONN had after reading the scan.  The tumor is the same size as it was in the most recent MRI (December before mom's d/c after surgery) but it has "thickened".  This could mean that the tumor is leaking "contrast fluid" into the tissues next to it or the tumor is growing.  It is unclear right now whether or not the Temador (the oral chemo pill) is working. 

However, Dr. Drappatz would like to do either an MGMT test to determine the tissue's sensitivity to the Temador or a very new Gene Expression Profile that looks at a variety of genes expressed in the tumor to determine whether or not mom has the enzyme that responds to the Temador.  The test takes 10 days and they will need to first acquire a "block" of the original tissue biopsied during mom's surgery in November from UCONN. 

So, we go back to Dana-Farber on the 12th of March to get another MRI in the morning and then meet with Dr. Drappatz and Dr. Wagle to go over the results of the gene expression profile and/or MGMT and the MRI.  

It's nice having options and mom is excited about being involved in any kind of clinical study or gene testing.  We continue to cross fingers, toes, legs, and sometimes eyes...

Purpose

It's been three months since Mama Marian was diagnosed with a brain tumor and there have been so many changes; so many updates, pieces of information here and there, etc... that it seems to make sense to take advantage of 21st century technology to keep everyone updated.  

Well, it ALSO serves to keep us a little more sane!  

Through everything, the people around us have been unbelievably supportive and, quite honestly, needed more than I think most of us would like to admit.  And, as awesome as it is to have so many friends and family calling, writing, sending well-wishes and emails, it's also sometimes overwhelming to have to share the same information again and again.  

As you can imagine, there are also a million and one things that my mom wants to do to give back, but it's getting harder and harder to do this in a way that's personal each time.  So, please excuse the formality of the blog venue, know that everything you've done and continue to do is so "utterly fabulous" (in the words of Mama Marian), and that I will do my best to keep this site up to date with information on my mom's recovery.