Promising clinical trial results

Every so often I type “Primary Central Nervous System Lymphoma” into a search on Google. This week I came up with some very promising information. Two abstracts from the same group based at University of California San Francisco are shown here. While the second is rather vague, the first looks most encouraging. The regimen is a slight variant on the one I received, and although our decision to forego radiation therapy was based on concerns about potential complications given my pulmonary issues, this would seem to suggest that my prognosis may be about the same even if I had decided to move forward with it.

Intensive chemotherapy and immunotherapy in patients with newly diagnosed primary CNS lymphoma: CALGB 50202 (Alliance 50202).

Rubenstein JL, Hsi ED, Johnson JL, Jung SH, Nakashima MO, Grant B, Cheson BD, Kaplan LD.

Source

Helen Diller Comprehensive Cancer Center, University of California, San Francisco, CA 94143, USA. 

Abstract

PURPOSE:

Concerns regarding neurocognitive toxicity of whole-brain radiotherapy (WBRT) have motivated development of alternative, dose-intensive chemotherapeutic strategies as consolidation in primary CNS lymphoma (PCNSL). We performed a multicenter study of high-dose consolidation, without WBRT, in PCNSL. Objectives were to determine: one, rate of complete response (CR) after remission induction therapy with methotrexate, temozolomide, and rituximab (MT-R); two, feasibility of a two-step approach using high-dose consolidation with etoposide plus cytarabine (EA); three, progression-free survival (PFS); and four, correlation between clinical and molecular prognostic factors and outcome.

PATIENTS AND METHODS:

Forty-four patients with newly diagnosed PCNSL were treated with induction MT-R, and patients who achieved CR received EA consolidation. We performed a prospective analysis of molecular prognostic biomarkers in PCNSL in the setting of a clinical trial.

RESULTS:

The rate of CR to MT-R was 66%. The overall 2-year PFS was 0.57, with median follow-up of 4.9 years. The 2-year time to progression was 0.59, and for patients who completed consolidation, it was 0.77. Patients age > 60 years did as well as younger patients, and the most significant clinical prognostic variable was treatment delay. High BCL6 expression correlated with shorter survival.

CONCLUSION:

CALGB 50202 demonstrates for the first time to our knowledge that dose-intensive consolidation for PCNSL is feasible in the multicenter setting and yields rates of PFS and OS at least comparable to those of regimens involving WBRT. On the basis of these encouraging results, an intergroup study has been activated comparing EA consolidation with myeloablative chemotherapy in this randomized trial in PCNSL, in which neither arm involves WBRT.

J Clin Oncol. 2013 Sep 1;31(25):3061-8. Doi: 10.1200/JCO.2012.46.9957. Epub 2013 Apr 8.

How I treat CNS lymphomas

James L. Rubenstein1,*, Neel K. Gupta1, Gabriel N. Mannis1, 2, and 

Patrick Treseler3

Abstract

The pathogenesis of primary and secondary CNS lymphoma poses a unique set of diagnostic, prognostic and therapeutic challenges. During the past ten years there has been significant progress in the elucidation of the molecular properties of CNS lymphomas and their microenvironment as well as evolution in the development of novel treatment strategies. Once assumed to be uniformly associated with a dismal prognosis, it is now reasonable to anticipate long-term survival and possibly cure for a significant fraction of CNS lymphoma patients. The pathogenesis of CNS lymphomas impacts multiple compartments within the neuroaxis and proper management of the CNS lymphoma patient requires a multidisciplinary team with expertise not only in Hematology/Oncology but also in Neurology, Neuroradiology, Neurosurgery, Clinical Neuropsychology, Ophthalmology, Pathology and Radiation Oncology. Given the evolving principles of management and the evidence for improvements in survival, our goal is to provide an overview of current knowledge regarding the pathogenesis of CNS lymphomas, and to highlight promising strategies that we believe to be most effective in establishing diagnosis, staging, as well as therapeutic management.

Blood August 20, 2013 blood-2013-06-453084

When Barry was completing his Ph.D. at the University of Rochester back in 1978, he had two opportunities for postdoctoral fellowships: one at Brookhaven National Laboratory on Long Island, and the other at University of California San Francisco. Simmie was less than a year old at the time, and the idea of moving so far away seemed rather overwhelming. It was difficult enough just leaving the wonderful medical team at Strong Memorial Hospital who had cared for Simmie (born 12 weeks premature) and me (severe preeclampsia). Yet I have sometimes wondered how different our lives would have been had we jumped at the chance to spend time in that beautiful city. Of course now it turns out that the crime rate in San Francisco has increased while New York has become the much kinder and gentler of the two cities.

The weather reports predict a beautiful weekend here in the Northeast. Barry will not be returning from the UK until Sunday evening, but our daughters and their families are taking good care of me.

Have a wonderful weekend!

Love,

Rebecca

So young yet so insightful

This one simply speaks for itself.

Thanks to Hedy for passing it along!

Love,

Rebecca

Checking out a new place

Our son-in-law Aaron worked from home today, and he took a break to take me to lunch. I can hear all the sighs out there – how nice!

There are a few vegetarian restaurants (that have kosher supervision) in Rhode Island. Dina and Aaron have been to Veggie Fun veggiefunri.com, 

in Providence, which they like very much, but we decided to check out a restaurant called The Grange  providencegrange.com. 

The Pawtucket (just north of Providence) location used to be a vegetarian restaurant called Garden Grill Café, but has now been taken over by The Grange, a restaurant whose main location is in Providence.

Of course this restaurant brought to mind the old ZZ Top song.

What a pleasant surprise! The first surprise was how crowded the restaurant was; we were seated at the opposite end of a large table with another party. The second surprise was that the food was very good. As with many vegetarian restaurants, there was a nice variety of cuisines, and the dishes were quite colorful. We both had the Mexican quinoa soup that was today’s special. Then Aaron had a pizza while I had a veggie burrito. It was a tasty, filling and enjoyable meal.

Two doors down is a vegan bakery called Wildflour wildflourveganbakerycafe.com.

We bought a bunch of things to bring home, and we sampled the pumpkin chocolate chip cookie in the car. Vegan baking is a bit tricky. There really is no great substitute for eggs, and vegans do not use milk or butter, as well as bleached flour and refined sugar. As I write this I cannot help but think: we really do eat a lot of unhealthy stuff! But that vegan pumpkin cookie may well have been the best vegan baked good I have ever eaten. We plan to try more of the bounty after dinner this evening.

What a nice addition to my day this outing was! Thanks, Aaron!

Dina served dinner last night (Zippy Cheese Sauce, from The Moosewood Cookbook, with mashed potatoes and broccoli) and is doing so this evening as well. Tomorrow I’ll be with Simmie and family. This week is killing my diet!

Love,

Rebecca

Amazing film

This is a fascinating documentary. It is long - about an hour - but truly worth the time.

Violin returned

Is patience a virtue?

One of the many good things to come out of this odyssey is that I have become a far more patient person. In years past, I always kept myself on a strict schedule. My daughters can testify that I have a long history of becoming agitated when things take longer than expected.

Yet over the past year and a half I have spent hours and hours waiting for appointments and it does not bother me. Given that reading is such a challenge, I am often left with nothing to do in those waiting rooms, but somehow I don’t mind. This is not a bad thing. I like the calmer, more patient, me.

But the old Rebecca may be hiding in there, waiting to come to the surface. I was in the rental office of our Sharon apartment to speak with them about why I am having difficulty logging in to my account on the web portal, which is used for service requests among other things. The young woman at the desk was very nice, but she was the sole person in the office and, each time the phone rang, she had to answer it. At one point she received three calls back to back, each requiring some amount of her time. I sat there watching her chat with the third caller and started to think “I have so much to do and I do not have time to sit here waiting for this person!”  

I had to chuckle. Within a week or two after each MRI, I begin to wonder how I know that I am still alright, that the tumor has not returned. With good reason, oncologists talk about remission rather than cure. Every time I forget something I wonder whether this is a sign of the beginning of that process. Is my impatience a sign?

Either way, impatience is not a virtue. Forgive me for kvetching, but is it too much to ask for a different sign that I am doing alright?

Have a calm day!

Love,

Rebecca

Choosing our words

I just sent an e-mail message to a dear friend who had written to me wondering if I have been receiving her messages, because I had not responded. I closed the note saying “My sincere apologies and much love are attached here." Then I pushed the "send"button, a message popped up asking me if I had forgotten the attachment!

That is both reassuring and a bit frightening. While I appreciate being reminded, there is something a bit unsettling about the feeling that someone out there really is reading our e-mail messages. But given my routine memory lapses, I can use all the help I can get.

Have a good day!

Love,

Rebecca

Seeing the glass as well over half full

We had a most enjoyable Sabbath. Friday evening, Dina and Aaron and the children joined us for dinner. We actually made something without a specific recipe, something we do not do very often. But I had an idea and we think it worked out pretty well. We stuffed bell peppers with rice, chopped tomatoes, cheeses and herbs and baked them. We also had company for Sabbath day lunch, two couples, one of whom we knew when we both lived in Dallas in the early 1980s. Their daughter is right between Simmie and Dina so they were all very good friends. We left Dallas and moved to Sharon and we like to joke that they followed us there. We waited for them to follow us to New York (which is where they both started) but they never did. Since we renewed our Sharon life we have been able to pick up where we left off and enjoy each other’s grandchildren.

The other guests were our friends Hedy and Mark, about whom I had written recently. Mark also continues to struggle with some of the side effects of his tumor and treatment. But he is amazingly upbeat, and when we commented on that he explained that if he looks at his life, he has had a multitude of blessings: a wonderful wife, a fulfilling career as a physician, four talented children and now two grandchildren, and a myriad of friends. He tries to look at this cancer against that background, and he figures that the balance is definitely on the plus side. That thinking may not work for everyone, but I am grateful to say that it really works for Barry me, and we appreciate his doing such a wonderful job articulating it.

Our children and grandchildren planned a trip to go apple picking today. We would have really enjoyed this but I called the orchard to ask about just what was involved to determine how difficult it might be for me to navigate. The man was very nice but it was clear that it was simply not an appropriate outing for me. The children went on their own, and we had a sneak preview of the pictures and I could see we made the right choice. They did bring us back a lot of different apples with names we had never heard. We tried one and it was delicious!

Meanwhile, we made dinner for everyone, Baked Pasta with Cauliflower and Cheese from one of the old Moosewood cookbooks, a long-time family favorite. This is basically how to take a very simple dish and turn it into a gourmet feast that pretty much dirties every pot in the kitchen to make! The recipe makes a huge amount and all I can say is that there are only a few cups left, so it’s fair to say that everyone enjoyed it.

I just realized that I have written about this dish before, back in late February! Ah, the wonders of word processing. You go to “find” and type in “baked pasta” and it finds it!

We put together the casserole in the morning, and then went to see the new Tom Hanks movie, Captain Phillips. I was a bit leery about this one because I knew there was a good deal of violence in it. Of course since it is based on actual events, you know going in that Tom Hanks survives this ordeal. It is gut-wrenching to watch, a testimony to the outstanding cast and script. Still, I could not help but wonder why I was willingly watching something so painful. At one point I leaned over to Barry and said that this film made chemotherapy look like a walk in the park. The final few minutes of the film were especially gripping, with no effort to sugar-coat the impact of the events. Tom Hanks has proven himself a superb actor again and again, and this is surely a worthy addition to his resume.  

We came home to put the casserole in the oven and cook the carrots and were stunned to see an e-mail that someone we know in Sharon has just been diagnosed with a rare and difficult-to-treat cancer. All that I might think I have learned over this past year and a half has not prepared me for what to do and what to say. It is simply too painful for words.

I will be staying here in Sharon all week because Barry is travelling to a meeting in Cambridge – not the one in Massachusetts but the original Cambridge in the United Kingdom. How could our daughters say “no” when he asked them to look after their old mother while he is away? So they are stuck with me, while I have the pleasure of spending time with them and our grandchildren. It surely seems to me that I am the real winner in all of this.

Have a good week and stay well!

Love,

Rebecca