Back to Dana-Farber and Forward with New Treatment

As promised we are confronted again with change and decision… at least there are consistencies in somethings along the way.

Dr. Drappatz, the neuro-oncologist at Dana-Farber we met two weeks ago, has offered us more information and another direction. Dad spoke with him on Monday night regarding plans for today’s follow-up appointment. The tissue block was received from UCONN for the genetic testing, but the results will not be in until sometime next week. Regardless, it seems our waiting and hopes lie elsewhere now, as it has become increasingly apparent that mom is perhaps not one of the 50-55% of people who respond to Temodar and radiation treatment. Another test is just that… another confirmation that we need to look elsewhere; and thank God we have that option.

A second resection, Dr. Drappatz explained, is most likely going to create more edema and swelling, may very well cause more and permanent loss of motor functioning for mom, and the gliadel wafers do much of the same with other unpleasant side effects. Ultimately, the vaccine takes time to create. Time, at this moment, is not on our side. Because of the recurrence of the tumor, we need to move faster and sooner to look for what may work to inhibit its growth.

So, instead of sending Mama Marian for the SPECT recommended last Friday, we have landed here at Dana Farber and are going a different route instead. The last time we came for a consult, the MRI showed that the tumor looked larger; however no one could be sure whether this was an effect of the radiation or the tumor actually growing in size.

At 8:00 this morning, mom had another MRI with profusion done and then at 11am we met with the clinical fellow, Dr. Wagle, and the neuro-oncologist, Dr. Drappatz, to follow up. As suspected since receiving the PET scan results, Dr. Drappatz informed us that the tumor has grown significantly within the last few months and has not responded to the radiation or the chemotherapy drug, Temodar. Upon initial imaging, the tumor measured 19 cm. x 19 cm. The results of this morning's MRI indicate that the tumor has grown 30 to 40% and is now measuring 32 cm. x 28 cm.

The front of the tumor is what is apparently causing most of mom's neurological problems, as it is infiltrating the motor strip on the left side of her brain. If she was to undergo a surgical resection again, this part would be left behind. However, the other options may actually improve her motor functioning and tackle this area as well as the rest of the tumor.

So, we were presented with two options this morning. First, mom would be eligible to start a phase II clinical trial with Avastin and LBH. However, she would have to wait to start treatment until 60 days post radiation. As she had her last radiotherapy treatment at UCONN on the 25th of January, she would not be able to begin the trial until the 24th of this month at the earliest.

Because the tumor is so aggressive, Dr. Drappatz recommended that we do not wait for the clinical trial and encouraged us to start Avastin as soon as possible. Fortunately, we did not have to wait long and mom's nurse here, Abbey Slate-Ciampa, was able to squeeze mom into the schedule for infusion today. So, after some more blood work, paperwork, and a run to the food court for lunch, we returned for the first of her Avastin treatments... and a much needed nap for the momster.

Avastin is not yet FDA approved for the treatment of GBMs; however it is in stage II of clinical trials and has reportedly been very effective in 50-60% of brain cancer patients. The risks and side effects are different from chemotherapy and mom only needs to go for treatment every two weeks for 20 to 30 minutes. There will most likely not be an nausea or additional exhaustion like there has been with the Temodar, but there is some vascular and bleeding risk. However, Dr. Drappatz informed us that the tumor currently has no internal bleeding according to the MRI and PET scans, and this makes these risks somewhat lower for her.

So, we begin another cycle and hope that this one stands apart. Like mom said today and we lamented so many times before in the hospital, it's been Groundhog Day in the worst sort of way... we could use a break in the clouds.

Grandma Ruth's Memory of Mama Marian's First Week

CT/PET Scan Follow-Up with Neurosurgeon... a hard day.

Dad took Mama Marian today to see Dr. Senatus, her neurosurgeon. She had a PET/CT scan yesterday afternoon at UCONN that looks at the tissue's metabolic activity in the tumor and provides images of its shape and size.

After an hour and a half of anxious waiting for the images to load on the computer, Dr. Senatus explained that it appears the tumor has recurred. Perhaps it is not responding to the infiltration of radiation and poison we've been sending its way for three months, as we had hoped.

In order to be absolutely positive that the tumor is growing, Dr. Senatus has ordered a Thallium SPECT to provide 3-D images of her brain and to look at cross-sections of the tumor itself to determine localized function (where the growth is most aggressive).

There are a few options to consider at this point in time, including surgical resection of the tumor, similar to the awake craniotomy Mom had in November, but this time she would not have to be awake. Dr. Senatus could go back in and extract more tissue from the tumor if it is possible to do so safely without resulting in severe loss of mobility. Mom would have to decide beforehand how much she would be willing to risk losing.

The resection might involve placing gliadel wafers into the vacant spots from which the tumor tissue is removed. These wafers are cut to fit inside these areas and bathe the tumor in chemicals that provide direct chemotherapy. They dissolve on their own and, as they do so, they release high doses of BCNU to destroy tumor cells. However, they can cause seizures, infections in the brain, and swelling.

Dr. Senatus is also considering a very new treatment, just entering phase II of clinical trials. He has been working with a colleague from Harvard, who is now at UCSF, on developing a GBM tumor vaccine. If he was able to obtain enough tissue from the tumor, he could use it to develop a vaccine specifically for her. It would be injected after development and could cause her immune system to attack the tumor cells. This treatment works on certain GBM patients whose tumors have a certain type of mutant protein that gets stuck in the "on" position, resulting in freakishly unrelenting cell division.

Above the cellular level, this journey remains unpredictable and, quite honestly, along the lines of torture on some days. Thankfully, spring is coming and mom's tulips and lillies will be coming up before she knows it. We could use some reminders of all that is beautiful in this world... some good regeneration and natural growth after a cold, harsh winter.

One day, a car fell out of the sky...

And hit her on the head...

That would be ONE of Mama Marian's most profound declarations for how and why this thing came about. Quite honestly, it all happened just about that suddenly.

Every time we meet with a new doctor, have to explain it to a friend who calls out of the blue, or try to remember it again for ourselves the absurdity and senselessness of it all just reemerge. There were no signs, we have no "oh yeah" moments where it begins to come together, and there is nothing we can point to or blame. In some strange way, that makes things worse but, considering the alternative, I can't quite say that it does.

When Jeff came home from Iraq this September we went down to see him, Dou, and Lorien at their house in South Carolina. Around the 24th of October mom and dad flew in to Columbia and Jody and I drove down from Virginia. We had a great weekend, minus Mama Marian taking flight off the front porch with Jeff's dog Bete in the lead one morning.

When mom went back to work that next week she began to fall and started having difficulty moving her right leg and foot. She was dizzy and off-balance, so she called the doctor, wondering if it was the Levothyroxine she had just started taking for her thyroid. Dr. Rosenberg, whom we all joke about being convinced every spot, cough, and misaligned hair is cancer, sent her for an MRI and discontinued the thyroid med.

Mom's MRI came back showing a 1.2-cm "focus of abnormal signal in the medial posterior frontal lobe in the precentral gyrus". Basically, we understood it was some sort of lesion and the MRI report stated that this was "most consistent with a metastasis given the patient's age".

We got scared a bit initially, but all of the tests afterward came back negative... CT scans, chest x-rays, a colonoscopy, blood work, mammogram, etc... Everything was negative for cancer. I went up to visit the last week of all of the testing, as mom started to get increasingly nervous the more she saw the doctors and medical people around her getting nervous. The Friday I came up to CT, mom had one final test that came out negative so we celebrated that weekend and mom informed everyone that no one was more "cancer free" than she.

However, her walking continued to get worse and the drop foot was becoming increasingly debilitating. She could no longer drive at all and had been given some medical leave by her The Hartford. We considered things like neurological symptoms from Lyme's Disease or the dog dragging her off the porch three weeks ago... who knew? It wasn't cancer because it hadn't metastasized from anywhere else. We had the proof!

That Monday, I took her to the doctor for a follow-up appointment with Dr. Rosenberg. Prior to this, he had ordered the MRI, received the results, and then went on vacation for two weeks. Dr. Levine, a physician in his office had been doing the follow-up consults and referrals with mom. However, Dr. Rosenberg was back for her appointment on Monday and informed us flat-out that she had a tumor and needed a neurosurgical consult ASAP.

The next day we met Dr. Patrick Senatus at his office next to UCONN Hospital. He confirmed that mom had a lesion affecting the motor cortex and all of the consistent symptoms; clonus (beat-like movements) in the right leg, increased reflex around the medial ductors, and a Babinski sign (upgoing toe) on the right foot.

Dr. Senatus informed us that the general standard of care involves a biopsy to core the lesion out and get a sample of it to determine the next course of events. Depending on how the biopsy came back, stereotactic radio surgery and/or radiation therapy would be considered for treatment. Part of the purpose of mom's craniotomy would be to resect the lesion and part would be to biopsy it to determine what type of tumor it was. He told us that the protein markers and such inside of the tumor would signal where the likely original site of the tumor was. Since mom's scans had come back clear, perhaps it was a metastasis from somewhere in her body that was too small or too new to show. Dr. Senatus was able to secure the OR for the very next day and she went for her next MRI that evening to more accurately guide the surgery. That MRI showed that the lesion had grown already, from 1.2-cm to 1.4 x 1.5-cm.

So, on November 26th, the day before Thanksgiving, we drove mom to UCONN for brain surgery. Mama Marian was convinced that if she blew her nose hard enough the tumor would eject itself so we tried that. We also tried talking to it, yelling at it, rubbing it, etc... no such luck.

The surgery started at 4pm that Wednesday afternoon. It was about a five hour procedure in which Mama Marian was put under general anesthesia by Dr. Yasuda, her anesthesiologist and was then put on a ventilator just in case. She was awakened twice during the procedure by Dr. Yasuda reducing the anesthesia to make sure that the resection of the tumor was on target.

May, Caitlin, and Esther all came to see Mama Marian off that afternoon. It was an awesome send-off and mom went into surgery with a smile! Jeff, Dou, and Lorien had begun the ridiculously long journey from Alabama (where Jeff was doing a month of training) to Connecticut by car!

At 9:15, Dr. Senatus came out of the OR and informed us that the procedure went well and that mom was recovering nicely. The biopsy was only preliminary as they were only able to determine the grade of the tumor, not the type. Dr. Senatus explained that it was a very high grade tumor. He hoped that the tissue sample sent to the lab for further testing would indicate that it was a metastatic lesion, as opposed to an intrinsic lesion.

The primary goal of the surgery was to get tissue to make a diagnosis. The sample indicated that mom's tumor was, in fact, malignant and hypercellular. The frozen section sent to the lab for further testing would be stained for dividing nuclei to see if the cells growth was arrested or growing. Dr. Senatus explained that if the tumor was intrinsic, the tissue cells would have "glial markers", whereas if the tumor was a metastasis, the markers would show where the original site was (i.e. "lung markers" from lung cells). We were now hoping for the tumor to be metastic because that was associated with lovely words like "cure". However, we would not know for a few days when the pathology report was expected to come back.

Mom did amazingly well recovering from her surgery. In fact the day after she was asking for Tylenol and rejecting the Morphine. She had a follow-up CT scan the night of her surgery and then an MRI the next day. The scans showed Dr. Senatus' incredible accuracy and "remarkable resction" (everyone is amazed by this man!) They also indicated swelling that had extended to the premotor cortex and some minimal edema (fluid around the tumor). He showed us the necrotic tissue on the CT scan, which was actually very small and emphasized how fortunate we had been to catch this thing so early on.

After two days, she was moved to the surgical floor of the hospital where she started more intensive physical therapy. That Saturday morning, Dr. Senatus met with us in mom's room and told us that the pathology report had come back early and did we want to know? We didn't but said we did...

Mom had a Glioblastoma Multiforme (GBM); a.k.a.- astrocytoma WHO grade IV/IV (I do not like the explanation of this and will therefore NOT provide a link to it)... basically a big ugly tumor in her brain that had just started growing there... not originating from anywhere else in her body, just sat right down there on her frontal lobe and decided to take up residence. It was described as parasitic and vascular, multicellular and just plain evil. The tumor is selfish and feels the need to take over everything around it, causing all of mom's problems on the right side of her body.

So, after several days in the hospital, mom was discharged home with a walker, a ton of steroids, and a black cloud trailing behind. She started walking so quickly after returning home and was doing incredibly well with in-home PT. Even though she is my mom, I have to say that she is the world's strongest woman and an awesome patient.

Two weeks from the date of her surgery Mama Marian began radiation therapy at UCONN five days per week. She started taking Temodar, a chemotherapy pill, on the evenings she had radiation as well. May hooked us up with "Marian's Miracle" and my parents were infiltrated with visitors, large feasts, bouquets of flowers, and every kind of good-smelling lotion available. On top of that came rides from friends all over the place to help out with getting her to and from radiation and doctor appointments. It has been so hard for Jeff, Dou, and I not to be there with her for those couple of weeks between visits but this made things bearable. In fact, I think Mama Marian cried more happy tears about how wonderful people were than she did sad ones about her diagnosis...

Christmas Eve was turned over to Dad, Jeff, Doughty, and me. As per usual Strange family tradition, we had family in for dinner that night. Although I must say it was more work than I ever could have imagined, it was the best holiday ever in so many ways. We didn't do presents (well, minus Lorien gifts) and had the most beautiful snowstorm on our trip up to Connecticut and all through the next day for our annual Christmas Tree event. Mom calls this the "cursing of the Christmas Tree" but it was milder than it has been in other years! We got to spend Christmas Day at home watching Lorien delight in her new train set and Elmo Live. Jody drove up from Virginia that night and instantly became Lorien's man-sized Mr. Potato Head boyfriend.

The weeks after Christmas were harder as mom finished her six weeks of radiation and chemo. She began to lose all the hair on the top of her head (she referred to herself as "Benjamin Franklin" for some time) and the swelling from the steroids became worse. Exhaustion set in and our mom, the lover of naps, became not so fond of the fact that she was sleeping through most of her days.

When I came to visit at the end of January, mom was doing well though. She was using her cane more to knock icicles off restaurant awnings and for enunciation than she was for walking and likened her newfound look to Winston Churchill.

As the doctors began reducing her steroid dose, however, she had the first of several seizures. This was scary and we didn't know what was going on but she was put on Keppra to reduce the seizure activity and her steroid dose went back up shortly after.

During the first three weeks of February Mama Marian began to lose some of her motor functioning again. By the time I returned for a visit on the 22nd she was having extreme difficulty walking and had begun falling and losing her balance quite a bit. This was just recently alleviated by another increase in steroid dose. Her MRI on the 9th showed that the tumor had not grown visibly in size but had thickened, possibly from the radiation or perhaps from cell growth. We were told that we would not know until the next MRI, scheduled for March 27th. February was not a great month and so we are glad to have March come along, hoping for spring to arrive on the heels of this next snowstorm.

Mom goes for her CT/PET scan on Thursday and we'll know more on Friday when we meet with Dr. Senatus about where we go from here... Possibly another surgery, possibly the new drug Avastin, probably more chemo, and definitely more not knowing and sometimes not wanting to know.

Regardless, it's nice to have to time at home with my family and friends and it's wonderful to have an "excuse" to be with my mom on a regular basis. In all of this, we continue to find little pieces of promise and unforeseen gifts along the way.

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.