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Catching One’s Breath?

29 Nov

Is catching one’s breath an issue?  No, if it was only a matter of simple breathing.  But in my case breathing has become complicated.  My lung capacity has become seriously impaired.  The difficult, if not impossible, question in this blog is really “What IS the catch?”  The answer is clinically unclear.  It lies within the until now unknown realms of the pneumo-thorax.  I’ve chosen not to share any further details of this one with you at this stage.

The reality is that this is the first blog that I’ve asked Pam to post, based on what I jotted down on paper, sitting in my chair.  Going to the computer is too much of a burden tonight, after a long day in Tel Hashomer Hospital.  But tomorrow is another day.  I wait to see what it holds.

Breaking News – The PARPS Have Arrived

11 Oct

The long awaited Parps[1], otherwise known as the “wonder” drug, are safely in my trembling hands. “Wonder” that is, as in “I wonder if they’ll do the trick?”

The complete story is too long to share with you in this particular blog. In any event I’m too emotionally drained at the moment. There are so many people I feel I have to thank first – yet cannot begin to mention everyone.

First and foremost, thanks to my oncologist, Dr Talia Golan, who took on the seemingly impossible to give me this life-saving chance. Thanks to Abbott Laboratories[2] for granting me their experimental drug. It was only today that I found out that I’m the only person in Israel that has been granted the drug on compassionate grounds – and I may well be the only person in the world given the opportunity outside of the Abbott trial.

Pam’s tenacity has no words that can be written to thank her.

Driving back from Tel Hashomer Hospital, my head was in a total spin. Bizarre things came to mind. Neil Armstrong, the man lucky enough to be first on the moon. His namesake, Lance Armstrong, a man who successfully battled cancer only to become embroiled in an on-going drug-abuse scandal. And as Pam, so correctly suggested, the drive home was reminiscent of bringing our daughters home from birth – a surreal drive with a cargo too precious for words.

For the record, I’ll be popping the PARP pills at 12 hourly intervals – starting at 19:00 local time tonight.

Let’s hope this breaking story will have a happy ending… in a long time to come.

 

 

 

 

 

 


[1] Veliparib, or ABT-888, is an orally active poly (ADP-ribose) polymerase potent inhibitor of both PARP-1 and PARP-2 that potentiates DNA-damaging agents in preclinical tumors.

Preparing for the Parps

10 Aug

I’ve used the term “roller coaster” several times to describe my bumpy  pancreatic cancer fight. A couple of days ago, two of my daughters danced into my room while I was resting , delighted with news they couldn’t wait to share: “Positive progress on the Parps. Abbott Laboratories[1] are starting Phase 2 trials – and it seems that you’ll be getting their drug”. Good news indeed.

Bad news is absolute – but this news left me stunned. For so long Pam has talked about the Parps as being the “game changer” while I’ve tried to temper her enthusiasm with what she saw as cynicism. I found the good news hard to digest. The concept of stopping chemotherapy for something better – that has “no side effects” – is too much to process. The belief that a cure will come keeps me going – yet just as it seems that we’re one step closer, I still can find no reason to celebrate. Inexplicable.

To think that Abbott is a corporation that grossed nearly US$ 40 billion last year – about a sixth of Israel’s total gross domestic product. That Abbott spent more than US$ 4 billion on research in 2011 – almost as much as Israel’s entire Ministry of Health budget. But it has brought them to Phase 2 trials of their drug Veliparib[2].

Veliparib, or ABT-888, is an orally active poly (ADP-ribose) polymerase potent inhibitor of both PARP-1 and PARP-2 that potentiates DNA-damaging agents in preclinical tumors. In the MX-1 breast model (BRCA1 deletion and BRCA2 mutation), it causes regression of established tumors, whereas with comparable doses of cytotoxic agents alone, only modest tumor inhibition was exhibited. Veliparib has been around since 2008 when trials first started for metastatic or unresectable solid tumors or non-Hodgkin lymphoma. Abbott’s trial version is specifically directed at pancreatic cancer suffers with the BRCA2 mutation.

I’m certainly no scientist, nor do I profess to have a working knowledge of these drugs. But I can recommend any and everyone that has pancreatic cancer to test whether they are a BRCA2 carrier. If so, contact Memorial Sloane Kettering, who are running the trials, (or Tel Hashomer Hospital, if you’re in Israel or your national oncology facility).

I was sitting outside my oncologist’s waiting room on Wednesday, waiting to hear more details of her breaking news the day before. Inevitably I flipped through my phone’s inbox to find an e-mail blinking. To be a messanger of bad news is not easy. A pancreatic cancer sufferer I tried to help had passed away. I couldn’t hold back the tears.

I’ve looked back to see if I mentioned him in a previous blog. On 20th May, 2012, I made a reference to him. He was my source of the trial I referred to in that blog. And here I was waiting for news of another trial.

I looked myself in the mirror this morning and seemed to perceive that my hair has slightly grown back. Is it just longer or is it the result of stopping Abraxane? I can’t wait to find out. 

 


 

[1]   Abbott’s website is worth a visit. Click on  www.abbott.com

[2]  I haven’t found any information through Abbott Laboratories but can direct you to  www.inhibitor2.com for more information.

 

The Wheel of Fortune Keeps Turning

18 Jul

I don’t know whether I should even be writing this particular posting – so obviously it’s a challenge to know how. Just when I ask myself whether there’s anything else to add to my blog, the big Wheel of Fortune starts moving. The only problem is to know in which direction it’s going.

I was circumspect enough in May, when I posted a “Thank You” to Tel Hashomer, to question whether I’d be back there.  The Parp Inhibitor, under the auspices of Memorial Sloan Kettering, was supposedly coming to Israel, but we didn’t know who would administer it. The oncologist responsible at Tel Hashomer was leaving for a fellowship in the States and I chose to follow my oncologist, who was Head of Department, on his move to Ichilov. Yesterday we were invited to Tel Hashomer to get an update on the Parps.

As fate would have it, administrative details stymied the fellowship and the  oncologist didn’t leave. She’s now progressing on the Parps. Her enthusiasm is palpable. She has that great quality of letting me truly believe that importing the Parps is personally for me. But nothing is certain. Not the timetable, not the ability to receive them and certainly not their guarantee of success. But their trial results have been outstanding – and no-one can take hope away. It’s just keeping everything in some proportion. Will they arrive in time?

In reviewing my case, she comes to the conclusion to move on to Mitomycin C. This protocol has been suggested both by Dr Wolf and by my brother-in-law. Dr Bill Isacoff has always supported the idea. Mitomycin C[1], manufactured by Sigma-Aldrich in the USA, contains three anticancer moieties; quinone, urethane, and aziridine groups.  It inhibits DNA synthesis. It is the most widely used of the Mitomycin antibiotics because it is the least toxic – yet shows a potent anti-tumor activity. It reacts covalently with DNA, in vivo and in vitro, inhibiting DNA replication.

Mitomycin is administered once a month. Either with a hospital-administered weekly push from a 5-FU infusion or a simple swallowing of a capsule called Xeloda – taken five-days on, two-days off .  Xeloda[2] is manufactured by Genentech, of the Roche Group, and is used to treat metastatic colorectal cancer (mCRC).  It is supposedly no worse than the side-effects of 5-FU. So with the Parps “on the way”, I see this as the sign to move back to Tel Hashomer.

How life goes round. I’m agonizing about whether to move back/on again. Then there’s the terrible timetable of waiting for the Parps – knowing all to well that life has a habit of coming up with nasty surprises. Anything can happen. Minutes before we left for Tel Hashomer yesterday, I learned that a former work colleague, all of 70-years young, had been knocked off his bicycle and killed on the spot.

Who am I to complain?

 _____________________________

Triumph or Trivia

28 May

You may remember that when I was in Canada I trivialized over writing a best selling book “Guide to Inter-continental Cancer Centres” – based on personal experience (see my posting “The Impossible Dream” dated 15th February 2012).

Today, I had my first treatment at Ichilov Hospital. I now feel suitably “experienced” – based on that unacceptable statistical sample of one – to share my findings. Today was, of course, the first working day after a long holiday weekend, so the results maybe even less representative. Hopefully the table of comparisons will help. I realize that it is more relevant for those in the Tel Aviv area but I’d be interested to know the experience of cancer patients wherever you are:

 

 

Subject

Tel Hashomer

Ichilov

1

Arrival Time

Never less than 45 minutes

Half an hour

2

Parking

Free parking right next to oncology dept

Free parking, 4 escalators, 5 mins walk & lift to department

3

Registration

Maximum 7 minutes

Over 1 hour wait

4

Blood Tests

Results within 45 minutes

Results took an hour an half

5

Vital Signs

Not taken

Blood pressure, temperature & weight

6

Pharmacy

Drugs arrive within an hour

Drugs arrive after an hour and half

7

Chemo Management

 1. Sterilisation kit                       2. Mechanical drip counter

 1. Manual hand scrub            2. Electronic speed control

8

Nursing Care

Excellent

Excellent

9

Catering

Free tea, coffee & soup

Free tea and lunch

10

Physical Conditions

 1. In need of restoration (British   under-tement)                           2. No view                                3. Possibility of private bed

  1. Brand new tower block         2. Sea view                             3. Comfy-chair in cubicle 

11

Treatment Time in Total

About 6 hours

About 9 hours

12

Getting Home

About 40 minutes

About 40 minutes

 

At the end of the day you look up to see whether the Sword of Damocles is still hovering in the same place or inching slowly downwards.

If it’s the latter, the travail turns from triumph to trivia. Time will tell.

In the meantime I’m more than aware of both options.

 

A Real Dilemma

20 May

This time last week I wrote about my so-called dilemma of following my oncologist from Tel Hashomer to Ichilov (from a spralling hosiptal in a Tel Aviv suburb to a tower-block hospital in the city centre). Well, my week went past without much to report. A “break” week which, unfortunately, was interrupted by the need to have our first meeting with Dr Wolf in his new rooms. The meeting itself was pleasant enough, but we did encounter the all too-foreseeable administrative hiccoughs. I perceive that today’s lack of working norms is responsible; something that would “never” have happened in the good-old days/old country. But that’s not the story of the week.

I mentioned to Dr Wolf that I’d heard of a new treatment being administered by a Dr Sela at Assaf Harofeh Medical Centre in Tzrifin, near Rishon Lezion. The treatment is a new a Phase 2 clinical trial of an anti-angiogenic product called TL-118.

TL-118 was previously tested in a mouse model of pancreatic cancer. In pre-clinical trials, TL-118 monotherapy has been shown to inhibit tumour growth significantly, compared to the standard-of-care chemotherapy.

TL-118 inhibits new blood vessel formations in tumours and thus inhibits their blood supply and growth. TL-118 is an oral solution administered once daily and comprises a combination of agents that target different, non-overlapping aspects of the angiogenic process.

Here’s a link to a recent press release:

http://tiltanpharma.com/apress%20releases/310804.php

Sounds simple. But how does one know whether one trial is better than any other? I’ve been waiting for the Parp Inhibitors – and up pops Tiltan. Is this another option? Dr Wolf tells me that there is no conclusive evidence yet that allows him to form an opinion – other than the trial is moving the new product forward.

Joining any trial is a real dilemma – I’m not there yet.

Thank You, Tel Hashomer

12 May

Last Monday may have been my last treatment at Tel Hashomer. We’ve decided to follow my oncologist, Dr Ido Wolf, to his new post at Ichilov Hospital in Tel Aviv. One learns to be wary of using absolutes. The concept of “never going back to Tel hashomer” may prove so wrong. Especially as word has it that Stage II trials of the Parp Inhibitor, under the auspices of Memorial Sloan Kettering, are supposedly coming toIsrael; specifically to Sha’arei Zedek, Belinson and Tel Hashomer Hospitals. Criteria have yet to be disclosed but the hope is that the next alternative is not too far away.  In keeping with how we’ve managed my illness upto now, we’re examining every possibility to ensure that I can get into the trial somewhere – as and when necessary.

Meanwhile, Monday came and went with an unfair amount of emotion.  The treatment starts with blood tests.  Two nurses have been taking my blood at least 2 or 3 times a month for the last year and a half.  How fortunate that they never had to struggle to find my veins – a problem so common for so many.  I thought of telling the nurses that this would be my “last time”.  The words stuck in my throat.  They never see the results but they must be so familiar with patients who really do have their last blood test – and not for the delicate dilemma of hospital preference. 

Then came the “farewell” from our tireless head nurse, Margalit – polite, practical and pleasant as ever.

It was only when I got home that the folly of agonising over the change of hospital issue fell into place.  An email from Agi Hirshberg was waiting.  It announced, in words that have only one meaning, that the Hirshberg Foundation would not be honouring a mother-daughter relationship for Mother’s Day next week.  The beautiful mother had succumbed to her pancreatic cancer. 

Can one ever forget the real writing on the wall – or can hope cloud the writing into timelessness?  Today, and more than ever as a Jew, in whatever field, we have to believe that hope cannot be taken away.

Is Change As Good As A Rest?

27 Apr

Monday was probably my last monthly meeting at Tel Hashomer with my oncologist, Dr Ido Wolf. The month before he informed us he was leaving for the largest hospital in Tel Aviv, Ichilov. A bombshell for us, possibly not less of a surprise for Tel Hashomer. Either way – a problem.

So when most other Israelis were touring the length and breadth of the country for their Passover holiday outing, our sight-seeing was the oncology department in Tel Aviv. The tenth floor of the new Ted Arison tower block. New building, beautiful interior design and staggering views of the Mediterranean– especially from the “recreation” room.  A well-appointed lounge with library, computer terminals and comfortable couches. They need it. The wait could be worrying. And so to the problems. Is the devil you know better than the devil you don’t? We “grew up” at Tel Hashomer, know the ropes and the nurturing nursing staff. Eighteen months later we’re still hanging in together. Their new Head of Department hasn’t even been named. My natural choice, a wonderful young doctor in the department, announced that she too is departing soon – for a Sabbatical in The States. 

But do we need change at this time of my roller-coaster life? Administrative adjustments, parking permits to purloin, new nursing staff and the tortuous traffic in and out of the never-sleeping city? All to stay with our oncologist. When our local hospital, with a reasonable reputation, is walking distance away. While Dr Bill Isacoff in UCLA and my brother-in-law, Keith are still helping us call the shots. Will we find someone else as accommodating and willing as Wolf? His interest for us to join him was certainly inviting.

Our insight of Ichilov is improved by a chance meeting with the Head Nurse, Bruria. So professional and patient. But she does warn us about waiting. “We work under pressure. Place is at a premium”. Not always a bed available. In fact, unlike Tel Hashomer, they don’t have beds in private cubicles, but comfy couches. Is this difference defining?

Our difficult decisions used to be whether to go to Denmark or Dubrovnik. We’re certainly in a different ball-game now.

 

 

Hancock’s Half Hour

14 Apr

Every time I think of blood – obviously donations but transfusions as well – I think of Tony Hancock’s unforgettable sketch, “The Blood Donor”[1]. And Hancock was exactly the person I thought of the moment I was told I needed a blood transfusion during my latest Abraxane treatment last Monday.

Funny thing, the brain – and thought transference. Which again reminds me of one of my favourite quotes – this time from Woody Allen: “Amazing thing the brain. For most people, it works from the moment you wake up – till you get to work”. Back to my blog. They tell me I need a blood transfusion. My hemoglobin count was too low. What I didn’t realize was that not all transfusions have the same affect. A healthy person, for example, in some sort of incident requiring blood, would have little problem in receiving multiple portions. In my case, my body is at high risk – apparently at a much greater risk of rejecting the blood.

But my thoughts didn’t immediately rush to the whys and wherefores of the need. I thought of Hancock and his inimitable lines. For those not around in those days back in the Sixties – and who were not lucky enough to have heard the still hysterical show, I have to share a few of his lines, such as “God gave me eight pints – I need eight pints” or “I don’t mind giving a reasonable amount, but a pint! That’s very nearly an armful!” or “Can I have my tea and biscuits” (after his finger was pricked for a blood test). How the world has changed. I wonder if people find that sort of humour funny nowadays – or could even listen to comedy shows on the radio, or watch that sort of entertainment on TV today?

My life has changed as well – as has Pam’s. I didn’t actually imagine that Pam would be charged with the task of running around Tel Hashomer to bring the blood. But that’s what happened – and she didn’t even faint! The learning process goes on. I’m “A” Rhesus positive (“Rhesus? They’re monkeys aren’t they?”). Having donated blood regularly for years, it was only this week that I found out what blood group I am. Does having the Rhesus factor improve my chances of survival?

So I had the transfusion – nice and slowly. Drip by drip just to make sure there was no adverse reaction – or maybe to ensure that it was another interminable day at Tel Hashomer.

But hey, they told me a blood transfusion would put my energy levels up – and it did. ‘Bloody marvellous!   


[1] “The Blood Donor” was an episode from the BBC comedy series featuring British comedian Tony Hancock. First transmitted on 23 June 1961, the show was written by Ray Galton and Alan Simpson.

If it was only as easy as ABC – Abraxane, Ben, Children…

27 Mar

The abdominal pains I’ve been suffering told me to go to hospital sooner rather than later. On Monday I was scheduled to start my new treatment – but Pam prevailed upon me to go on Sunday. This is how it panned out.

Tel Hashomer has an oncology doctor on call – saving sufferers the added discomfort of unnecessary queuing and quibbling. Call me “Ben” says the young man. You know you’re getting old not when the body lets you down but when the doctors don’t seem old enough to have finished school. I briefly tell him my case history – and smile to myself as he raises his eyebrows when I date my diagnosis as October 2010. He seems extremely competent and caring – but couldn’t confirm whether my pain was a direct cause of the illness or side effects of Tarceva. “At least you’ve done with Tarceva”, he says encouragingly, but can’t allay my concern. His best effort is to prescribe better pain killers – and give me the all-clear to start Abraxane.

Good that new beginnings fill me with optimism. But on what is it based? Do I have any idea of the side effects in the offing? When and where they’ll kick in? And I have to get the naïveté that everything will be better into some prospective. Not easy. Is it such a wonder drug or is it only so much wishful  thinking? What I am learning is that the my oncology department doesn’t seem to have too much first hand experience with pancreatic cancer patients on Abraxane – it’s certainly not in our Ministry of Health’s basket of medicines – so I might be on the cutting edge again. But we manage the administrative hurdles and I had the first treatment on Sunday. So far so good…

But now comes the crunch – the children. It seems that whatever age your children – the accuracy of their perception can surprise you. No hiding my pain and no hiding yet another change of treatment. Their concern moves me to tears and emphasizes yet again what a strain this illness is on the whole family. But this gives us all strength as well … so maybe things will be easier.

As usual, the family have rallied round. Sheila came up with the idea that the recent addition to my diet of “bread” may have been too much too soon. So I’ve cut back for the moment – and happily, the first couple of days have me almost back to my old self.