Tag Archives: clinical study

Breastcancertrials.org

My dad found this clinical trials website for me when my doctor and I talked about looking at clinical trials that might have long application processes (the idea being that I don’t want to get caught with a treatment that isn’t working and face a long wait time for a clinical trial.)  Our deal is that I will look up any trials that I might be interested in and my oncologist will vet them to see if they are appropriate for me, and help me with applications as needed.  Shortlisting trials for my specific disease is made easy by the website which has you fill out a comprehensive medical history first, and then filters the posible clinical trials you might be eligible for accordingly. Thirty-eight came up on my list — everything from trials for new drugs and targeted therapies to stem cell transplants to power-of-prayer studies — and there is an e-mail notification option to alert you to any new studies that come up.  

Of course, the hope is that my current treatment will work for me & I won’t be needing these trials, but I’ve been treatment-hopping for a while now and am beginning to see the wisdom in adopting the Boy Scouts’ credo.

While this site lists U.S. clinical trials only, it does have a link to other non-U.S. sites. I found it very user-friendly and thorough. Check it out or pass it on… www.breastcancertrials.org

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Hunting Dragons Again

Yesterday was one of those great days: In the afternoon I met my niece, who is perfect and amazing – just a miracle of life wrapped up like the world’s most beautiful burrito in my arms – and in the evening I ate lobster with a friend who always makes me laugh and inspires me, having herself recently kicked cancer’s a**.  Needless to say I slept soundly.  Smugly, even.

Alas, this morning I came screeching back into cold hard reality at full-speed – right back into the routine that somehow never becomes routine:

  • 9 a.m. needle to the port in my chest – check
  • Extraction of 6 colour-coded vials of blood – check
  • ECG – check
  • IV fluids & drugs for about 2 hours – check
  • Review bloodwork results with my nurse: all counts low, especially platelets. Am instructed to rest as much as possible, and to avoid getting any deep cuts or gashes. Cancel my sword-fighting plans this weekend – uh, check

This evening I’m scheduled for my first CT scan since beginning the clinical trial. They’ll scan everything from head to pelvis, looking for any sign of further metastasis (please, no more) and of course, measuring the growth of the ol’ neck lumps (please, no more than 20%). 

I’ve already choked back half the gigantic bucket of nasty chalk-juice, which, by the way, some jerk had the audacity to brand “E-Z CAT” – probably a relative of the jerk who came up with branding Fox News “fair and balanced.”  Now I shall proceed to eat everything in sight before fasting begins.  Then I’ll nap, if I can possibly quiet my mind, and later my husband will take me back to the hospital for the freaky sci-fi space capsule scan.

And then? 

Well, then we just wait. Probably until Monday. We wait and try to enjoy our weekend as much as possible, hopefully avoiding “deep cuts and gashes” or any manner of flesh-wound, and also trying not to think too much about the results.  This of course is like trying not to breathe too much.  

I really want to stay positive and only think of good things (my family, my new niece, lobster dinners) but the truth is I’m terrified.  Still, if there is something to know, I’d rather know it.  Can’t fight it if you don’t know it’s there, right?  And maybe there just won’t be any surprises.  Maybe the test drug is working, in spite of seemingly enlarged neck lumps, which yes I have stopped touching all the time.  Mostly. 

Anyway, on with the dragon hunt.  Again.

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Trotsky & TMI

 

This clinical trial drug has knocked me right out.  Differently to chemo I find I’m hit with side effects pretty much the day after treatment, rather than four or five days later, but if last week is anything to go by I should be feeling better by the end of the weekend. Unfortunately, for now, its all fatigue, raw mouth, nausea, and what is often referred to in my family as “the Trotskys” – not because you keep tilting to the left but because of the manner in which you rather frequently make your way to the toilet.  Trit, trot, trit, trot…. You get the idea. 

 

(Dear god I cannot believe I’m divulging that on the World Wide Web. Several generations of my incredibly WASP forebears just rolled over in their graves at my lack of discretion.  Because you can get wireless internet access in your grave.  Fact.)  

 

Anyway, my dad is here from California for the weekend and has become chef de cuisine, nanny, personal shopper, and maid (in a word: me) which is helping enormously.  I am being pampered, a little of the stress is alleviated from my husband, and my daughter is out of her mind with delight that her Grandpa is here.  Tomorrow he has promised to make me potato & fish pie, exactly like the grandmother who just finished rolling over in her grave used to make.   

 

And that’s enough typing from bed with one hand and one open eye for tonight.  Tomorrow is a new day and one to which I shall no doubt awaken in horror when I recall the graphic personal content of this post.

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Friday Night in Emerg

At about 5pm on Friday, my clinical trial nurse called to say that I needed to go to emergency to get my heart checked out immediately. Apparently a MUGA heart scan and 10,000 ECGs are not enough “checking out” for one week.  I’m not complaining – as I’ve said before, if they want to scrutinize every blip and squiggle on my test results, I am happy for them to do so.  Grateful, even.

 

It turns out my medical oncologist had reviewed all my ECGs, but since this new study drug can be hard on the heart (and given all the chemo, radiation and Herceptin I’ve had) she wanted me to be seen by a cardiologist before the weekend just to be sure there was no damage to my heart. 

 

I was told not to be alarmed, that this was just a precaution and they didn’t think anything was wrong – but these kinds of assurances are always a little suspect when you are at the same time being urged to proceed immediately to the emergency department where the triage nurse and ER doctor have been notified and are expecting you.

 

I thought about riding my bike but then reconsidered, given that the storm clouds were about to burst again, and because this was, you know, a possible cardiac situation.  My husband was still in a conference call and then had to pick up our daughter, so I called my friend Angelique. Not just because both her parents are doctors and she knows her way around a hospital, but because she is fantastic company in any situation, and I knew her tennis game had been rained out.

 

Anyway, it turned out that they processed me remarkably quickly, and “they” were without exception kind and friendly and professional.  Plus the doctor who was responsible for me was young, personable, funny and, ummm, extremely attractive with a gentle, deep voice like Forest Whitaker’s.  I blame that combo of qualities for any little flutters on the ECG.  It was like being on a hidden-camera show, and Angelique kept making fun of me when we were alone in the room: “Oooh, Dr. Hot Doctor, listen to my heart!!”  We were having far too much fun for a Friday night in Emerg.

 

After many tests and Q&A’s and a visit from a senior cardiologist who told me that the test of the liver enzyme that would indicate heart damage had come back negative – hooray! – we were free to go.  Dr. Hot Doctor ran through a litany of possible symptoms that would indicate a need for me to run back immediately into his waiting arms (or maybe he just said to the emergency room) and then the nurse unhooked my IV and ECG leads, literally emancipating me at last.  We thanked everyone for their excellent care and efficiency & Angelique was on the phone ordering sushi before I’d even changed out of my hospital gown.

 

Georgia was in bed by the time we got home but my husband was anxiously waiting, so we unpacked our take-out and ate dinner in my kitchen while telling him all about our Friday night at Emerg, including several embellishments about the charms of Dr. Hot Doctor.

 

Then, exhausted and happy to be home with my Mr. Hot Husband, my dear friend, and my at least passably healthy heart, we hit the couch to watch a movie and I fell asleep before the end.

 

Turned out to be a great night after all.

 

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Want to Go Home

I want to go home. Yesterday was a good day, and my spirits were high, but it was exhausting.  After dinner when my husband had to leave I felt suddenly bereft. I put on a brave face but he could see through it; he was halfway out the door when he came back in to kiss me again.

 

Nighttime in hospital is different; after the last test is over (blood pressure, 12:15 am) and you can finally go to sleep, you start to think about why you actually have to be there; how it came to be that you’re alone in a hospital at night; why your life led to this place, this moment, this situation…  Or at least that was where I cleverly allowed my mind to meander in the dead of night.  I don’t recommend it – it’s not a train of thought likely to encourage sleep.  Anxiety, yes. Sleep, not a chance.  (For sleep, I recommend a combination of breathing mediation and healthy dose of Ativan.  That worked nicely.) And if you do manage to sleep, you’ll notice that 6 am is universal hospital Disturbing the Peace Hour — doors are opened, voices are upped to full volume and anything that makes loud crashing noises or has squeaking wheels is enthusiastically pushed up and down the hallways.  No rest for the …ill?

 

I do not admit defeat — I’m not even close to defeat.  In fact, I strike that word from my vocabulary.  But I do confess that I’m tired and depressed and I miss my home, my bed, my little girl, and most of all my old life.  The one with no cancer in it.

 

My mother is here with tea.  Thank god for mothers and cups of tea.

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A Lab Rat’s Life – Day One

Since my first day on the clinical study was a long one, so shall be this post: 

 

·         Arrive at hospital 10 am (very civilized)

·         Go to blood lab and have seven vials of blood extracted.  Lab technician sings He Ain’t Heavy He’s my Brother (“The road is looooong….”) I think this is perfect.  Have been humming it all day.

·         Go up to top floor of hospital and am welcomed, weighed & moved into my room: window view East, wireless connection from my bed, very nice accommodations, service excellent.  (Americans have no idea what they’re missing.)

·         Clinical trial nurse (her name is Naz) goes over some questions with me, I answer hers, she answers mine.  She is not rushing me, she explains everything.

·         Oncologist (her name is Dr. Elser) comes to give me a physical exam & ask/answer more questions.  Again, everything is explained, nothing is rushed.  I like these women.

·         I go for a chest x-ray because I have a little cough (this clinical study stuff is a hypochondriac’s dream!)

·         Naz hooks up my ECG leads and proceeds to do 4 or 5 ECGs, about 10 minutes apart. All are normal.  This is our baseline.

·         I eat some hospital food (the low point of my day)

·         Naz sets up an IV in my arm for the administration of flushes & drugs (Panobinostat, followed by Herceptin.)

·         We are GO for drugs.

·         Naz accesses my port to take blood samples. There are seven (or eight?) vials to be filled with my blood today. This is after the seven vials taken this morning.  (No wonder I dreamt of vampires last night. Specifically, of a really glamourous, wealthy vampire couple in their fifties, kind of like that couple in the old TV show Hart to Hart, except slightly less goofy and with much darker pastimes.)

·         Friends Michelle and Angelique arrive bearing my favourite chips, trashy magazines, candy, novels by my favourite writer, little French cakes, Thai food, tidbits of gossip and lots of really good energy (the high point of my day)

·         Friend Carol (who recently completed participation in a clinical study herself) drops by to visit, bringing yet more gloriously trashy magazines!

·         Naz pops in periodically throughout this little salon of visitors to switch IV bags and make sure I’m feeling ok.  (I am laughing my head off and eating treats, clearly feeling ok.  Maybe she wants to make sure I’m not overdoing it.  Or that I don’t secretly want these people to leave. I feel that Naz would make it happen if I gave her the signal: people would be briskly and professionally ushered out the door and into the elevator before they knew what was happening. I am growing very attached to Naz.)

·         My IV is finished.

·         As my friends take their leave I start to feel dizzy.  Crashing from candy-and-cake-induced sugar high? Abject sorrow at their departure?  No: side effect of study drug. 

·         Naz is all over my blood pressure, repeatedly checking it, notifying my oncologist, and hooking me back up to the IV with a bag of saline.

·         Dizziness abates, blood pressure normalizes.

·         Blood tests & ECGs resume, and will continue hourly until 10:20 pm. 

·         I blog.

·         Uh oh blood pressure down again. More IV fluids.  I am SO HYDRATED!

·         I blog.

·         Blood pressure levels out.

·         My husband is coming soon, bringing a supper prepared by our dear friends who have a fantastic gourmet food shop and catering business.  These are good people to know at any time, but given that powdered mash potatoes and suspicious-looking meatloaf just landed on my table, I’m especially grateful to them right now. 

 

After supper I want my husband to climb into this bed beside me and read for a while. Even though we frequently battle over the far more expansive real estate of our bed at home, there’s something nice about someone being squished up beside you in a hospital bed.  As long as it’s someone you love. Not just a random orderly. Or, god forbid, another patient.

 

Dashing husband has arrived, bearing outrageously delicous-smelling food!  Double hooray!!

 

 

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Panobinostat Rat

First of all, THANK-YOU!!! Thank-you for all the comments, cheers, high-fives, happy tears, and general whooping-up of it right alongside me as I celebrated some good news for a change.  Would you believe I have some more good news to share?

 

I got into the clinical study! I’m officially a Panobinostat Rat!

 

The health of my platelets, white blood cells, heartbeats and whatever else they measured has been deemed study-worthy, and my new life as a lab rat begins tomorrow!  My bag is packed and I check in to hospital at 10 a.m. for three days of fairly intensive treatment and repeated testing of heart and blood. They’ll be testing hourly — absurd, crazy amounts of incessant testing, testing, testing — and they’ll keep at it for something like 8 straight hours before they let up a little.  Then, after a bit of sleep we start all over again with the treatment (Panobinostat & Herceptin) and, yes, you guessed it: a little bit more testing.

 

But I don’t mind. Recent history has taught me that it might be better to have my body watched over obsessively than left to its own devices anyway.  Plus if this stuff works, who cares? I say bring it.

 

(OK, I say “Bring it” now, but I do reserve the right to whine and complain about the constant poking/injecting/scanning etc. as soon as it becomes unbearable.  Which could be as early as, like, 2pm Eastern Standard Time, Thursday.)

 

I don’t know if I’ll have internet access so blogging may not be possible, but if it is, stand by for all the gory details.  And wish me luck!!

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