For those of you who may be interested, the first results are emerging for the experimental trial Keith participated in last fall. It appears that almost no one was helped by the regime - progression free survival of 6 or more months was less than 3%. A recap of the MD Anderson report can be found at http://virtualtrials.com/news3.cfm?item=4619



Certainly in Keith's case there was no benefit at all from the drugs - and it points out the sad truth about experiments - they are just that. For all the medical advancements mankind has achieved, the simple reality is that we are mostly searching for solutions by trial and error - and in the case of brain cancer, it is mostly error. We understand very little.



The day Keith and I made the decision to go for this trial, we made a vow that no matter what happened, we (I) should never regret the decision or pursue the what-if's. It is hard to stay away from that territory, but I try.

Funeral Services for Keith

Services will be held Monday, December 15 at 2 pm at Mt Sinai in Hollywood Hills. In keeping with the Jewish tradition, in lieu of flowers we ask that a contribution be made in Keith's memory to the UCLA Foundation for the Art of the Brain - UCLA Neuro-Oncology Program

https://giving.ucla.edu/Standard/NetDonate.aspx?SiteNum=135

Art of the Brain - UCLA Neuro-Oncology Program
710 Westwood Plaza, RNRC #1-230
Los Angeles, CA 90095

Keith Sidley - April 6 1953 - Dec 11, 2008: A Eulogy

Keith,

So death has finally come to claim you, and I am wrecked.

You surely would not have minded that I have sent this to a whole bunch of people, some of whom didn’t know you well (or at all), but all of whom knew how large you loomed in my life, geographic separation notwithstanding.

When I arrived at your house last week, even after great emotional preparation, I recoiled at the sight of death going about its grim business – rendering you largely paralyzed, skeletal, facially disfigured, near-mute and occasionally bewildered and panicked. You will perhaps remember the description of you by some besotted admirer from your youth - ‘the body of a God, the face of a devil’. To see you robbed of that, and the attendant sad and sodden ministrations on your failing body, carried out with efficiency and calmness by your heroic family and friends, ah, that just broke my heart.

I remarked with some amazement to Kerry (one of the many Florence Nightingale friends who could be found at your bedside at any given time) on the great river of people flowing through the household all day – old friends, new friends, people who cooked meals daily for your family, well wishers, Tzara and Samantha’s friends, neighbours. I remarked to her about the stunning volume and frequency and dedication of this flood. Literally scores of people. Every day, all day.

She said, simply, ‘It’s the mark of the man’.

Indeed.

Thoreau said, famously, the mass of men lead lives of quiet desperation. Not you, my beloved cousin. You brayed and roared your way across life, all abristle with passionate and sometimes angry opinions about matters of the day – politics, Jews, Israel, art, sport, architecture, bosses - whatever subject tickled or irritated your fancy – we heard about it. It was fun to be around you. It was fun to sit in on a Keith-fuelled argument. It defined you. No matter the merits – everyone wanted to be around you, to listen, or to take you on. Sometimes your roar pissed people off. Sometimes it made them laugh. But, damn, they all loved the engagement.

So then – you were heard, loudly and clearly. A rare achievement in an increasingly noisy world, and the mark of a man in full.

Your wife and children, the heroic Kathy, Sam and Tzara will hear the echoes of your loud passions in the house for a long time – I hope it will comfort them.

As you knew, I am utterly without any belief in any god or spiritual force. So I cannot be trite with ‘going to a better place’ or similar nonsense. But I will say this – if there is any point to this, your suffering, your early end, your life, the mourning that we will all go through, it is this – we are marked permanently by what is left when we go. The memories that are carried by those that loved you, or liked you, or even those who didn’t. In your case, the roar that was your life will resonate amongst all of us, until we too, depart.

And on that score, my beloved cousin, you aced it.

Boykey

Hope and Human Kindness

The past two weeks have continued to be very difficult for Keith. He has had a few very good days - Thanksgiving was lovely - but he has also had some very difficult days and nights. The most disheartening development is that Keith is now experiencing stretches of pain and times of considerable anxiety. With the guidance of the palliative care team, we have added pain medications to the mix, including morphine as needed.

There has been no improvement in physical capability. Keith has lost virtually all ability to move on his left side. Even on the best days, it is not really possible for him to stand even with support. Still a fighter, in his wakeful moments, Keith is anxious to do physical rehabilitation work. His good friend Garth helped devise some simple exercises which allow his limbs to get some movement and to help prevent cramping.

In spite of the physical challenges, we were able to make our second chemo appointment this Tuesday. Aaron and Enzo carried him fireman style to the car and were invaluable in lifting him in and out of the wheelchair. Fortunately there are no side effects associated with the chemo so he is not in any discomfort as a result of the treatment. Many thanks to Aaron and Enzo - we could not have managed any other way.

I am thankful that there have been a few good days - a steady stream of friends have continued to drop in and call; when Keith is wakeful he still cracks a joke now and then. With the addition of the morphine, wakeful moments are growing unfortunately fewer.

Our dear friend Kerry has been a rock - she has been here every day with her healing massage and reike - it has brought Keith much comfort. The meal mitzvah crew have defined the word mitzvah with a capital M - we have been so nourished by your generosity and your loving attendance - thanks to all and especially to Trish for being the organizational maven.

Our family has felt very blessed by the love of our friends and the warmth from this amazing community. Keith has said to me often with tears in his eyes that he does not understand why so many people have cared and given so much. We don't know how to thank you. You have been our heroes and you have shown us the wonder of humanity and the meaning of hope. Any cynicism we might have had about the power of the human spirit melts in the face of this demonstration of the capacity of humans to care for each other. The experience for me has been profound and I can only hope to be able to measure up to your example and pay it forward.

Difficult 2 Weeks - New Direction

As many of you know this has been a very challenging 2 weeks. On Monday, November 3rd, as we were preparing to go to UCLA for chemo, Keith suffered a grand mal seizure. We called 911 and within minutes a bevy of firefighters arrived to transport Keith to the ER at Kaiser. At Kaiser we did a CT scan and huddled with our oncologist. It was a long day - but there were no blood clots or new swelling indicated on the CT scan - the conclusion was that we needed to increase the anti-seizure meds. We headed home - unsettled by the experience but grateful that it didn't seem to stem from any unwanted complications. Unfortunately, we missed our chemo drip for the week.

As is typical post seizure, Keith was very sleepy for the next few days - those who visited found that he was only up to a few words (if any). Thursday, just as he seemed to be regathering strength, he met up with another round of diarrhea. This onslaught was relentless - we didn't sleep at all Thursday night going back and forth to the bathroom - both of us were completely drained. Again, he spent the next few days regathering his strength.

Monday (the 10th) we headed off for UCLA, mindful of the prior week's trauma. All went off smoothly, but it was another long and exhausting day. Keith fell asleep minutes after we arrived home (4 pm) and woke only to eat some dinner and take his meds for the next day or so.

The trend for the balance of the past week has been a gradual decline in Keith's ability to control the left side of his body. His sensation is diminished and he is very weak. He is unable to support himself or rise to a seated position and he is not able to walk without considerable assistance. Transfer to the wheelchair requires considerable effort.

Looking back over the 2 weeks, it is clear that we have been losing ground. Saturday we did our 1 month progress MRI and we had the readout yesterday. We were not surprised that the MRI showed that there has been no progress with the study regime - and as suspected there is renewed activity on the motor strip which is the likely cause of the loss in motor abilities on Keith's left side. Yesterday, we consulted first with the Kaiser team and then traveled to UCLA to meet with that team. The consensus from both sides was that we withdraw from the experimental study and begin treatment with Avastin in combination with Carboplatin. This morning (Tues, the 18th) we are at Kaiser awaiting the first 3 hour infusion. Future infusions will occur every 2 weeks. These drugs have fewer side effects so Keith's quality of life should be a bit better - less tired, no diarrhea, no more skin rash.

We have been greatly helped by friends near and far over the last few weeks - there are no words to express our gratitude - but thank you to all our heroes.

Day 11 of Chemo

We have now finished the 11th day of the UCLA trial. There have been a few relatively modest side effects so far - Keith developed the expected rash about 7 days in and yesterday suffered his first bout of diarrhea. We had been advised to anticipate both so neither was much of a surprise. His blood work seems to be holding steady - and we will go for our 3rd round of Temsirolimus next Monday.


Physical therapy paid us a visit last Saturday and gave Keith a number of exercises which can be done either sitting on the edge of the bed or with support in a standing position. We were also able to find a nice used walker at our local thrift store. He is not able to walk on his own at present and we rely on a wheelchair for our outings. The walker is useful for doing "laps" around the bedroom as well a providing a stable platform for exercises.

Keith continues to feel very weak -- he still naps on and off most of each day and is not up to much prolonged conversation. For now, he simply has very little energy. The Monday outing to UCLA exhausts him - but he is steadfast in his resolve to do small bits of exercise throughout each day as he can.

Ellen, the amazing acupuncturist who has worked with us over the last 2 years, was kind enough to visit us at home on Wednesday afternoon and did some very helpful work with Keith. She had wonderful advice on ways to help Keith's brain reconnect with his left arm and leg - the key is to keep using what he has so that his brain begins to rewire and remember its signals even as it is recovering from the trauma of surgery and fighting the new tumor.


Keith had been a bit reticent to be "needled" - he has played the pin cushion role for a steady stream of white coats over the last month. He succumbed to Ellen's gentle persuasion and her touch was magic. Wednesday evening he got a needed burst of energy and was able to venture out to catch Samantha's set at Tangier.


We continue to have a steady stream of visitors - all wonderful and all much appreciated. There are times when Keith is hardly able to speak - sometimes he is barely able to wake up - but he whispers to me often how touched he feels and that he has amazing friends - and he
does!

Day 3 of Chemo

Monday we spent most of the day at UCLA and Keith has been officially restarted on the trial (http://clinicaltrials.gov/ct2/show?term=tarceva+and+Temsirolimus&rank=2). For those of you who are technically inclined, there is a theoretical discussion of the action and synergy between the 2 study agents at this link: http://www.nature.com/bjc/journal/v96/n6/full/6603656a.html.

The logistics are fairly simple. Keith receives an infusion once a week - in our case it will be Monday's. We go to the research center at UCLA where Keith is examined by a member of the neuro oncology team and the study drugs are called up from the pharmacy. (The drugs arrive in a brown paper packet - in cases where there is a blind trial the brown paper bag is meant to make the study agent "unidentifiable" - ours isn't a blind study so it just seems funny.) Keith is situated in a hospital room/bed and first receives an IV dose of benadryl (antihistamine in case of any allergy) - then we have a 30 minute wait - and then a 15 minute infusion of the Temsirolimus. The process could take as little as an hour - but our experience is that start to finish it is more than 2 hours. Everyone is very very nice and very professional - it is clearly a research environment and they are grateful for our participation. The second drug is a pill - he takes that each morning. They gave us a 28 day supply (in a brown paper packet) and I have a diary to fill in - time of day of administration, any side effects, etc. (No side effects so far.)

We do not have much in the way of published results of the study. Kaiser told us they have several patients who have done quite well. When pressed, "quite well" meant one went six months without a recurrence and one went nine months. In the context of brain cancer six and nine months is considered "quite well". I did hear that some preliminary numbers may be released next month. Generally these studies are abandoned if they find that no part of the population is helped - because the study is ongoing, the indication is that at least some of the population is having some success.

There is no specified timeframe to the study. Essentially you continue with the trial until you have a recurrence (a new tumor) or you "progress" (expansion of existing tumor) and you choose to drop out and pursue other options. There were other studies offered that I briefly looked at - but at the moment there is not too much out there. Many of the current studies involve avastin or avastin-like agents. Because the latest information suggests that avastin has the potential to create other insurmountable problems in the long run, the experts are a bit stumped - and there are not so many options for experimental treatment.

Because we are in the study, we are not able to do radiation. In the ideal, we might want to do both - but that is simply the drawback of being part of a research protocol. Since the radiation is only able to target a very specific area (the visible tumor) and we know that this cancer typically hides unseen elsewhere in the brain - targeted radiation is a limited solution. We have opted for the chemo approach because it is systemic and will attack both the visible and invisible cancer cells. Not an easy decision - and frankly timing was part of mix. Radiation would not be ready for us until next Wednesday - the chemo was ready last Monday. Speed to treatment was a real consideration in our situation so by some measure of default, the study won out.

I can't express how relieved we are to be on the attack. Cancer teaches us that we cannot control everything - but that humbling lesson doesn't mean that we shouldn't/can't muster all that we can to try to beat this thing into submission!