Haircut

Today Mimi and Suzie are in the hospital with Barbara, Ed will be with her in the evening.
Shane reports: "Ed sounded in good form on the phone. He is going to the office today for the first time in 4-5 months. He's also thinking about getting a haircut at his barber uptown."
Predrag:  One of Ed's persistent life mysteries why Barbara allows him to go to only one barber in all of the New York City, but when they are in Italy, she is pleased with the work of no matter which barber. He has been told that is because Italian men are so vain that the worst barber in Italy is as good as the best one in New York.

On vaccine made from patients' tumors

[posted by Predrag, notes on a treatment that Ed expressed interest in. Probably Barbara cannot join the trial, as it requires craniotomy, but otherwise the timing is right, and she is eligible. Would be good to contact Dr. Jeffrey Bruce, a surgeon at Columbia University Medical Center]

Research premise: Vaccines made from a person's tumor cells may help the body build an effective immune response to kill tumor cells.

Dr. Andrew Parsa

UCSF Helen Diller Family Comprehensive Cancer Center
San Francisco, CA
Contact: Valerie A Kivett, BS 415-353-2076 kivettv@neurosurg.ucsf.edu

heads the trial. He writes:

Immunotherapy is an attractive alternative to conventional adjuvant therapy because it can specifically target malignant glial cells while preserving function of surrounding cells, including neurons. Several clinical trials of active immunotherapy for malignant glioma patients have been initiated. [...] My laboratory has focused on the phenomenon of immunoresistance in cancer, and how immunoresistance relates to fundamental oncogenic events. [...] I have collaborated with a biotechnology company, Antigenics Incorporated, to develop an investigator initiated clinical trial to treat recurrent glioma patients with an autologous tumor derived heat shock protein vaccine. The phase I portion of this trial has finished accrual, and we have generated some favorable initial survival data as well as compelling immunomonitoring data. A multi-center Phase II study is currently underway for recurrent glioblastoma patients as well as a single center Phase II study evaluating the vaccine in primary glioblastoma patients treated with chemotherapy after radiation.

Parsa heads two clinical trials. The Phase 1 trial, running since 2006 and closed to accrual as of 7/25/2007, is the National Cancer Institute (NCI) funded "GP96 Heat Shock Protein-Peptide Complex Vaccine in Treating Patients With Recurrent or Progressive Glioma"

One of the Co-PIs (Phase 1 only) is Jeffrey Bruce, MD

Herbert Irving Comprehensive Cancer Center (recruiting patients)
Columbia University Medical Center, New York
Contact: Candy Yanes cy2162@columbia.edu

The Phase 2 trial "HSPPC-96 Vaccine With Temozolomide in Patients With Newly Diagnosed GBM (HeatShock)" started June 2009, runs through 2011, is conducted ONLY in San Francisco.

Phase 2 trial eligibility:

• Able to read and understand the informed consent document; must sign the informed consent
• Histologically proven, non-progressive glioblastoma multiforme (GBM)
• Must have suspected diagnosis of Glioblastoma Multiforme with a surgical intent to resect at least 90% of enhancing disease
• Surgically accessible tumor for which surgical resection is indicated and has not been previously irradiated
• Prior radiotherapy required

Intervention:

• Conventional surgery craniotomy
• Patients undergo surgical resection. Viable tumor tissue is used to generate the gp96 heat shock protein-peptide complex (HSPPC-96) vaccine. Patients with primary disease receive standard adjuvant therapy after surgery. Patients whose disease progresses during or after standard adjuvant therapy receive the HSPPC-96 vaccine. Patients with recurrent disease receive the HSPPC-96 vaccine between 2-8 weeks after surgery. The HSPPC-96 vaccine is administered intradermally every 1-3 weeks for 4 doses and then every 2-3 weeks thereafter in the absence of disease progression, unacceptable toxicity, or vaccine depletion.
• Patients are treated with the autologous tumor-derived heat shock protein peptide-complex (HSPPC-96) administered at 25 μg per dose injected intradermally once weekly for 4 consecutive weeks and monthly following standard treatment with radiation and temozolomide.

From a CNN article: "More than a year into the ongoing clinical trial, none of the eight patients who have received vaccines made from their tumors has seen cancer return."

A blog by Mino Freund, NASA Ames Research Center astrophysicist and a patient in Parsa's clinical trial, is worth a read. Stops July 2010.

Sara notes: also investigate treatment with Ativan.

B in the hospital

Just heard that B fell and is at the hospital. I quote E:

"She fell this morning and she is now having a CAT scan. They want to keep her for safety in any case. I don't know how long she'll be in here."

Ed seem to have his laptop if people want to get in touch.

Joe asks Andreas: do you have any more details about the fall and whether Barbara was seriously injured?

Andreas September 23, 2010 9AM : I think B is back home. More a checkup that everything is OK.

A contact at Columbia?

Andrea Califano, Columbia Professor of Biomedical Informatics, models Glioblastoma multiforme (GBM) brain tumors and should know a lot about them. Might be of interest to talk to.

PS from Predrag: I have had a few longer conversations with Ed about Barbara over last two weeks, sorry I have not reported on them yet. The news are not good. The treatment is very exhausting, and no signs of improvement.

Ed's brush with technology

With B in the hands of her sister, I made a dash to PC Richards. This was in accord with Charles' strongly advocated rule that I should see the set before I bought it. They all looked alike to me, except for size. The salesman (called Fidel) said that was because the parameters were adjusted to make them aggressive. At home they would not look like that. So I could not follow the spirit of Charles' prescription.

I then followed Jean-Luc's advice, backed up by Jeff, and asked for the Samsung plasma. The salesman approved. However, I applied Alan's correction and got a 50" screen. Though it did look a bit large, the salesman said it was the good choice. I assume he was working on commission but, still, he did not push me to LCDs.

I got the DVD player suggested by Jeff and bought the whole schmear on the spot including delivery and assembly, thus giving Andreas more time to work on his thesis instead of fooling with gadgetry. I was amazed to get same-day delivery. Charles had said it was best to get the cable installed before the TV came but the salesman assured me that having the TV in first was the right way to go. I believe Charles but I wanted to have the business done with.

Thursday, Sept 16: It is as I expected. These things are never simple.

Two nice Barbadians (one was the salesman) showed up at 9:00 last night and put together the stand (not a trivial task) and set the TV on the table in the living room. It is very large. One of them told me that they always look twice as large as they did on the wall of the show room. It is huge. He said that we would adjust after a week and would love it. Well Alan loves his so, unless he's moved into a huge apartment since I last saw him, I ought to be able to adjust. But Barbara had a shock on entering the living room this morning.

The set on its pedestal is rather unstable but for $200+ I can get a solid stand that will hold the thing up. I guess I have to go for this. The DVD came with the wrong cables so could not be attached. I need those. I need a surge protector. One of the delivery guys will call me about all that at 1:30. So we are not in business as yet. It is pretty big though.

They charged $80 (cash) for the work and I suspect that there is a fiddle in there somewhere but I have not got the strength to argue about all this any more.

So continues my brush with technology.

Friday, Sept 17: I know you are all anxiously awaiting the news of our technical progress here.

With a TV and DVD player installed we can play DCVs. Tonight, we screened (if that is the word I want) "Top Hat" thanks to the combined NetFlix gift of Predrag and Milena Cuellar and Predrag's administrative actions. It is a brilliant display by Astaire and Rogers in their kind of dancing against the backdrop of the standard formulaic romance of that era. Barbara watched half before dinner and could not stay up for the other half after dinner. But she does love that stuff and will see how it comes out tomorrow.

When the set is on, it is a marvel. When it is off, it is the elephant in the room. I must get a decorative painting to put in front of it when it is not being used.

I promise not to send you a report whenever a movie is played.

Broadband and streaming for Ed & Barbara

[Alan is coordinating this: if you have a suggestion, enter it as a comment at the bottom of this post.]

HEd now has a TV and a WiFi DVD. Please feel free to send DVDs to Barbara & Ed. Ed says, nothing too serious for now. Barbara might like lots of Fred Astaire, Gene Kelley, good musicals, Cary Grant, Casablanca, Big Deal on Madonna Street, uzw. Still to be figured out:

Time Warner broadband activated September 25. Channel 27 MSG should be included in "Standard Service": "The MSG Network, now shortened to simply MSG, is a regional cable television and radio network serving the Mid-Atlantic United States. It is focused on New York City sports teams. The network takes the name of Madison Square Garden, and has long been the producer of radio and television broadcasts of the NBA's New York Knicks, NHL's New York Rangers, and WNBA's New York Liberty, which play their home games at the Garden."

Predrag, Thursday Sept. 16 started a 2-EVDs at a time netflixs subscription

User: edwardaspiegel@gmail.com
Passwd: Pr....g?
Teh apartment wireless: COWS blablah

Milena Cuellar had already given Ed an account with two free weeks, but has now canceled it.

Alan Wolf, 917-710-0080: I have a roku, which is terrific. The roku box is inexpensive and has no monthly attached fees (unless you want things like Amazon movies streamed through the box). Roku delivers much of netflix's content at no additional cost beyond the minimal membership cost ($9 / month) and no mailing/waiting for DVDs. It allows you to pick content either from a PC or from the TV/roku interface.

Barbara update

10/3 9/25 TW guy did something - internet - but no wireless, need a router (Alan wants Roku) Boxed set of 5 movie, Alec Guinness (2 locked up) B cannot walk to the bathroom Initial heart problem: Stress related formation of the left ventricle, supposed to go into therapy in Falmouth for that (but things got worse) 9/12 went to walk to Union Square - got caught in the rain 4 min exercise - first time ever no time to do anything - either washing dishes, or sorting pills Ed going crazy with TV, everybody has decided to help him. Tresser says NO plasma, buy it at Richards Childress came by, his son in solid state physics says buy a Wi-Fi DVD player, for 10$/month you can stream stuff. 9/11
saw radiation guy go bak to more steriuds Chemo:

• an hour after dinner: 1 anti-nausea pill
• an hour later: 3 pills of Temodar, to be washed down with a 8 oz. glass of water. Barbara refuses to drink water, fruit juice. Ed will try Gatorade next.

Radiation:

• Saw the radiation oncologist, Dr. Yamada.
right leg is dragging walk is unsteady unstable Mimi will kill me 30 emails a day Barbara summer shoes inappropriate Contact Proofs have arrived Ed's minds is 1/2 movie must watch "Top Hot" she is not talking not doing exercises (physical speech) waited too long 3 weeks of radiation, 2 more weeks 8 mill techadrom steroid squizeeng blood vessels - upping them helped with speech, but walking is worse - knees radition oncologist leaving for a week she is exhausted she is hallucinating, but she cannot express herself maybe needs antidepressents? Psychiatric nurse has not showed up Morginbesser dying of cancer one walk a day Judy comes at 1, will take to pay Help: some one to come organize and pay the bills Little talking is there, she will "I think the apple" "You want to go home" "Yes" Hard to talk needs slipper

she does not want be home when cleanless Lea made chicken soup mostly sleeps legs are atrophied physiotheorapist not doing exercises 1 walk to the park does not tressers 3 hours there on the weekend mimi and help cannot explain anything write cannot srilankan delivers food every day 8/31 Barbara just sleeps if you do not exercise, muscles athropy, legs are 1/2 girth, very unstable Got her to walk on Sunday morning in the radiation I gave her shots of any clotting, can stop if 2 walks a day, but it is very difficult to get her In chemoterapy no crowds, very infectious, no movie theaters purchased car in 1958

Update from Andreas

I spoke to Ed on the phone today and I will also meet him tomorrow afternoon.

Tonight there will be a person at the Spiegel residence. The idea is to see if he can help with the cooking. I think it is B's sister that has arranged this. I will let you know how it went.

There is also progress on the entertainment system. Jean-Luke is ready to order a TV and DVD [click here], as soon as we get a go-ahead from Ed, and than have it delivered and installed. This has been some time in the making and I think Ed really would like to have some entertainment at the house. At some stage we might want to ask you all for nice movies to lend to E and B but let's wait until things are up and running.

Shane Keating and I are thinking of setting up some kind of email list for people that would like to volunteer to help out in different capacities. We think it might be better to have one contact point. Predrag suggests that you click on the [can I help?] tab at the top of this page if you have an idea how you could help, and we will try to coordinate this without putting extra pressure on Ed.

I am in contact with Ed every day. It is usually a very short call. It has proved very difficult for me to conduct business over the phone. Email is even harder. The best way to reach them is on the land-line. Ill try to keep you all posted with what I learn.

Andreas Svedin
stand in secretary
andreas@astro.columbia.edu

August

[Ed: I have never written what people call a Christmas letter but this account of our life in August and written on the Labor Day weekend begins to sound like one. So, without any experience in the game and for those of you who don't care about details, let me first give the bottom line and say that we are at the end of our first week of chemo- and radiotherapy. As I very recently wrote to a friend, I am having trouble to get B to eat much or even to drink anything. Getting her to drink a glass of water to wash down the chemo pills is a nightly struggle. (Water tastes bad to her. Clear juice or some other flavoring for the water is allowed but that does not work much better.) Her leg muscles are atrophied (that condition has been named sarcopenia in recent years) and she is unstable when walking. And she is feeling the dread nausea. Her medical treatment seems to focus on the tumor while not much attention is paid to the patient. I suppose that all that the patients suffer is well known and not much can be done about it.]

We left Memorial Sloan-Kettering Cancer Center [MSKCC] for home on the afternoon of August 3 with a new load of medicines, a cane and a walker. Barbara was visibly in a very delicate condition after her seizure a week earlier. She was still hardly able to speak, was extremely fatigued and her walking was very unstable. It seemed to me that she should spend a bit longer in the protective environment of the hospital but I was given various reasons why she should go home.

Worse than all of these problems, was that she was apparently did not appreciate the nature of the state she was in. This meant that she did not take appropriate precautions in all her actions and that I had to watch her carefully.

Another problem was that Barbara has for some time gotten up often during the night to go to the bathroom. The frequency of these excursions had gone up, or so it seemed to me, to more than twenty trips a night. Though she preferred sleeping in the bed in an alcove of our small room to facilitate these trips, I got her to return to the large bed in the bedroom. I also wrapped my exercise bike in a large comforter and put it on her side of the bed so that she was protected from falling out and could not leave the bed on her side. That way, she pretty much had to awaken me when she left the bed. (She tried to avoid this but I tried to sleep lightly.) Another one of her preferences is to wake up at night to read. She did not like waking me with the reading light but I persuaded her (nearly) to not worry about this.

These problems were exacerbated by her sleeping most of the time during the day so that she did not sleep well at night. Her lack of physical activity prompted Dr. Omuro to prescribe daily injections of an anti-clotting agent (fragmin) since lying around all day does promote clotting. At first, visiting nurses administered the injections but they insisted that the insurance would stop paying for this service and that I had to take it over. I did this for a time but finally Dr. O. agreed that if she took two short walks per day, we could stop the injections. This meant I could replace the onerous job of injecting by the more difficult one (sic!) of having to persuade B to take walks. There were other tasks that kept me busy most of the time, even with B sleeping a lot. Surprisingly, getting food (even with help from several kind people) and organizing the ingestion of the right pills at the right times took much time. But even more surprising was the time devoted to phone calls and emails. The result of all that is that the first three weeks of August are pretty much a blur of sleeplessness and nervous strain that I won't even try to reconstruct here.

It turns out that Barbara is now in no condition to deal with our admin and I never was. Lea Tresser did a good piece of it in mid-August including dealing with the insurance claim for a mild auto accident back in June. The insurance was with AmEx who wanted to know who our regular insurer is. That is a piece of information that Barbara did not remember and I did not know. But it got sorted out in the end (though we have not been reimbursed as yet). This is just a sample of the things that surfaced when Lea went through the papers.

At last, toward the end of the month, we began to get ready for the treatment. Getting the first round of pills for the chemotherapy took quite a while, but they finally came. There were only enough for 21 days and, when the treatment plan was unexpectedly modified to a six-week uninterrupted run, I was afraid I would not get the remaining pills that were needed in time. Fortunately Lea Tresser stepped in again and, after spending a couple of hours on the phone dealing with the various people involved, managed to expedite the shipment. So we are set for the long haul.

We also got going on preparations for the radiation. This involved sitting (lying, actually) for the making of a mask to ensure that Barbara's head is in the same place for every session. There were the usual confusions about appointment times but we finally made it through all that.

For those who do not know how radiotherapy works, let me just say that several beams of energetic x-rays are fired through the head from different directions. All these beams intersect in the tumor which then gets a heavy dose of total radiation. The other parts of the brain, being in the path of only one beam, get much less. This works well when the tumor is well concentrated as it was in early May but, by now, there has been noticeable growth and spreading. It looks fractal. (Perhaps all the intermediate steps were not needed, as I had mildly suggested back when. In fact, on seeing the first MRI from very late April, Dr. Gutin had already said it was a glioma.)

Finally, on the evening of Sunday, August 29, we started the chemotherapy. This involves taking an anti-nausea pill an hour after dinner and then the three pills of Temodar (trade name) an hour later, right at bed time and with a reliably empty stomach. (The separation times are the ones I settled on among some slightly different suggestions from different experts. These differences, I suppose, mean that the best time intervals may not be known exactly.) The pills are to be washed down with a full glass of water but Barbara has been resisting drinking water. I have found that she does not mind drinking fruit juice as much so I consulted the pharmacists to learn if juices are an acceptable substitute for the chemo. A suitable mixture of clear juice and water seems alright, though she is resisting this quite strongly as well. The only effect I noticed on the first night of chemo was that Barbara's trips to the bathroom became quite infrequent, almost worryingly so. But she is getting back to her normal state in that regard after five days of irradiation. However, weakness accompanied by dizziness and nausea have now set in.

On the first morning of radiotherapy, we took a cab home after a brief detour. As we got to the cab, the driver rolled down his window to ask our destination. In the instant it took to respond, Barbara gained a step on me and entered the taxi. In doing that, she hit her head. It hurt but, as she is not speaking well, I couldn't tell how much. When we got home, she slept for three and one half hours (not unusual) and, when she got up at my urging, she had a headache. I called the oncologist's office and was told to get her to the urgent care unit of Sloan-Kettering. After a great effort to get a cab (it was 5:00 pm and just about every cabdriver was off duty) we got to MSKCC. There we found a mob scene, quite unlike what we encountered there when the seizure struck. (I was told this difference between evening and early morning in the urgent care unit (= ER) is normal, so schedule your crises accordingly.)

We spent the next five hours in the UCU where a check for internal bleeding was made with a CAT scan. After four of those hours, the doctor came by and said there was no bleeding and things looked good except for a bit of swelling that is expected from the treatments. The doctor said we could then leave. But there was still an IV and when, after an hour, no one had come to deal with this, B started to pull at it. I did my best to dissuade her and rushed around to find the nurse. The nurse had not heard that they were done with us -- another missed communication of the kind that seems fairly normal.

As we were waiting for the nurse to unplug the IV and let us out we were provided with a wheel chair. I had brought the chemo pills (brand name Temodar) since I had not known when or whether we would be leaving that night. I asked Barbara to sit on the side of the bed while I was preparing the meds for ingestion. I thought she was well installed when, suddenly, she was falling head first from right behind me. Luckily I managed to grab her in time. It turned out that she had decided to get into the wheel chair and tripped on it. That was the closest call yet. As I have said already, Barbara seems not entirely aware of her present condition and takes unnecessary chances. For example, as I saw her into bed at home on that night, I found her IV on her night table.

The week continued with various other minor events and highlighted by our daily visit to MSKCC for radiation treatment and the painful experience of getting B to wash down her chemo with a full glass of water. Most of the rest of the time, Barbara slept, even in the taxi to MSKCC. This left me to do various household chores answer the phone and try to read some of the literature on complementary treatments such as cannabinoids. B's doctors do not seem very interested in these. I can imagine that they see no reason to listen to an astronomer about such matters. And, after all, how many physicists know much about string theory? Of course, ignorance about string theory is not so harmful even if Engelbert and Predrag are not so keen on it. On the other hand, there is by now a reasonable literature about cannabinoids that, to this layman, looks very serious.

On Thursday, we got to see Dr. Yamada about how things are going. The radiation treatment is progressing smoothly and we learned that there will be only five weeks of radiation treatment. I inquired about the value of cannabinoids for supplementary treatment. Dr. Y. said that I should take this up with Dr. Omuro whom we are not scheduled to see for about three weeks. This is a very discouraging situation and I am not sure how to proceed in the matter. For those who are interested, there is a review by Manuel Guzman  (the reference was provided by a friend of Barbara).  [Predrag: for an overview of the literature and clinical trials, see this and this.]

For some time now, Barbara has been coughing at night with a very occasional sneeze. On the Friday before Labor Day, her nose was running, so I called the office of the oncologist. I got the voice mail and left the number of my newly acquired cell phone since we were heading off for radiation treatment. Indeed, they called back rather quickly but this was one of the times that the phone decided not to ring, as it does now and then, so we did not make contact till afternoon. After a couple of calls back and forth it was suggested that we take the problem to Barbara's primary care doctor. (On the Friday afternoon of the Labor Day weekend!) B was not too keen about this suggestion since the guy never turned up when she was in the NYU Hospital (his hospital, I believe). So now we are into the long weekend and watching carefully. (At least, I am.) We even have Monday off from radiation.

[All I would add is a remark that Pascal (and perhaps others) made to a correspondent: If I had had more time, I would have written less]

Medical schedule

[posted by Predrag and Andreas, notes from phone conversations with Ed, sorry if garbled]

Monday September 6

Andreas: Spoke to Ed.
• He is very busy taking care of all the little things, arrange pills, paying bills etc.
• Barbara's family is looking into getting some kind of helper. I do not know details.
• I think it would be good to figure out some kind of coordination for the people want to help. If there is ideas please let me know (andreas@astro.columbia.edu).

Sunday September 5

Andreas: Spoke to Ed and it all seem to move along. We are looking into getting them a TV with netflix or a DVD for them to be able to watch movies. I try to speak to him once per day.

Tuesday August 31

• The chemo since Sunday night, for 42 nights. The radiation is every morning on weekdays, for six weeks (until October 8?).
• Barbara sleeps large fraction of the time, and it is hard to keep up the two walks per day that doctors want her to do. Ed is worrying about her muscles getting weaker (there is a N.Y. Times article about this baby boomer problem).
• Ed sounds like very tired. He has started composing the next missive, will post it when I get it.

[Ed prefers not to have to deal with comments, but please feel free to comment to posts by Predrag]