Operation Smile

I thought this was a wonderful video of a charity that does a great deal of good in the world. 



P.S.  Had a great time in Eugene.  Saw two superior concerts.  I had to work for an hour and a half to get a ticket to the Saturday night show because it was sold out.  Some very nice woman from Portland sold me one of her tickets.  Thank you Ms. Satterly!  I am sure that had my children seen me, they would have been embarrassed beyond belief to see me in the parking lot with my hand in the air.  But it was way worth it.  We think we saw Bill Walton there.

The young man who played lead guitar for Furthur (John K, formerly of the Dark Star Orchestra) can really play, and his voice is better than Jerry's.  (sorry Jerry, I still love you though).  It lets Phil and Bob relax and do their jobs, although Bob's vocal range is lower these days.    But Phil has become a much better singer than he was, and the backup singers and drummer and organist were first rate.

Sunday we visited a boutique distillery, 4 Spirits, in Corvallis, OR.  Right now, it's just getting off the ground, but the young owner is producing vodka with two labels:  WebFoot Vodka and Slap Tail Vodka.  Of course, they are tongue in cheek labels for the Univ. of Oregon and Oregon State crowd, but I am looking forward to trying them.

Off to Eugene for the weekend

I'm feeling like the last episode of "Freaks and Geeks" today because I am going with friends to Eugene to see two Furthur* concerts:

But it's a return to my misspent youth and a chance to get out of town.  Have a great weekend!

*Furthur was the name of Ken Kesey's bus.

New Word Wednesday

Our new word for today is hemoptysis.    Hemo, of course, is the Greek root for blood.  Ptysis also comes  from the Greek-- ptyalon, meaning  sputum, saliva.  So, that's what I was doing at 2:30 am this morning when I woke up to a coughing jag.  Fortunately the amount was small, so not to worry.  However, if the trend continues, then we start to get concerned.

Dr. West had a good comment about hemoptysis on a thread in  Cancer Grace:

Hemoptysis is most typically caused by a tumor invading a nearby blood vessel that is also near a branch of the bronchial tree. It may also be from a blood vessel that is part of the cancer eroding. If it's a large volume, it can be life-threatening or even fatal, though that is fortunately quite unusual, especially compared with just a minor tinging of blood in sputum of someone with cancer, which is pretty common. Still it's always worth being in good communication with a person's medical team about this symptom, how mild or severe it is, and whether it's getting worse, better, or just stable. And "anti-angiogenic" targeted therapies like Avastin (bevacizumab) and some others in that class can be associated with worsening of hemoptysis that more often becomes quite worrisome in its severity, so these agents are highly recommended to be avoided in people who have a history of anything more than slight hemoptysis.

Gemzar has a slight incidence of hemoptysis in patients--about 2% from what I could read on the internet.  So, will continue to monitor for now.

Progress Report

Mondays are the new chemo days.  At the meeting with Dr. Martins there was some bad news and some good news.  And some weird, unresolved news. 

Let's start with the bad news since it has to do with the YouTube video posted.  It was a big hit my last year of law school.  You should play it while reading this post.  Anyway, Dr. Martins could hear, for the first time, with his stethoscope, the burbling in my lungs that I have been hearing at night when I lie down.  It's in my lower left lung and probably due to secretions as a result of the tumors.  Pleural effusions can only be seen radiographically so that will wait until the next CT scans in October.  So I am certified as having my own "squeezebox."  I also have several small, painful hard growths on my scalp that Dr. Martins thinks may be skin cancer.  We will watch them to see if they grow larger.  Just think, I too, can be like a mistranslated Moses! 

The good news is that the small swelling on my back between my 6th and 7th (or was that 7th and 8th) mid line vertebrae does not appear to be malignant.  At least it is softer to touch than most lung cancer tumors.  And the swelling in my lymph node on my neck has decreased somewhat.

Now for the weird news.  I've been in contact through http://www.cancergrace.org/ with a fellow who lives outside of Atlanta.  He wrote me this summer asking about the MDX 1105 trial and I was enthusiastic in my response.  He enrolled in it at Emory in Atlanta the end of July, and last week sent me an email asking how it was going for me.  I replied, telling him I was off the trial, and he sent a sympathetic response.  In it he told me that when he signed the consent form there was a provision for randomly receiving either 1mg per kg of body weight, 3 mg per kg of body weight, or 10mg per kg of body weight. You were not told what dosage you would be given when you signed the form.  But when he went to received his first infusion, he was told that the clinical trial protocol had changed and all patients were being given 3 mg per kg of body weight.  This was this past summer while I was still on the trial.  And I was never informed that the protocol had changed.  I was receiving 1mg per kg of body weight.  I received this email this morning, right before my appointment with Dr. Martins, so you can believe it was the first topic I raised with him.  Both he and the clinical trial manager had never heard of such a thing.  They thought that perhaps the fellow at Emory was in the MDX 1106 trial but I've received 6 emails from him all with MDX 1105 in the title. 

So, I took the little guys to Greenlake for a swim and a walk to deal with it.

Roger Ebert reviews 50/50

http://blogs.suntimes.com/ebert/2011/09/films_that_are_not_for_the_dyi.html

My review is contained in the comments to his review.

I hope many folks see it.

Wiener Parade September 18, 2011

 

Going Home

Thanks to Alex who posted the second video first!  But this is the whole story:







A wonderful story for a Saturday.

Elephants never forget.  And bless those in Tennessee who have created such a fabulous sanctuary.

P.S.:  The epilogue

Gemzar wins the toss

Monday I went into Seattle Cancer Care at 7 am for blood work and 8 am to meet with Dr. Martins.  He recommended going ahead with the Gemzar and I agreed.  So, I was back at SCCA at 3:30 for the infusion, which lasted about an hour and a half.  I was given steroids to help my body accept the Gemzar (as had been done with earlier chemotherapy drugs) and it powered me along nicely for two days, but today things crashed big time.  I'm not sure if it's the reaction to tapering from the steroids or catching a cold (which is again a possibility since this type of treatment causes the blood cells to diminish), but I spent the day at home, mainly sleeping.

I have a new growth near the lymph node on my left neck where a prior metastatic node was taken out back in 2010--it's probably a malignant regrowth.  If the chemo doesn't decrease the size, we'll look at radiation.  It's painful and makes it difficult to wear a seat belt in the car because of its position.  I also have several other growths on my head and on my back. The ones on my head are small, hard and painful to the touch.  The one on my back doesn't have any sensation to it.  This is a strange place to be, patrolling my body for unexplained bumps.  I'd much prefer to be utterly clueless about it all. 

A friend from work put me in touch with a cousin of hers who is in pharmaceutical research back east and she explained that the clinical trial that I participated in was a phase I trial, where they are still trying to establish the dosage to be used in treatment, so a petition for compassionate use would not be in order at this point. 

Still, I have beaten the odds.  Sunday marks the date I was informed I had cancer back in 2009.  I plan to celebrate by participating in another dachshund walk at Greenlake.  You are welcome to join me!

Putting it back into perspective

Thank you, Shelley, for this.  You were right.  I was in tears by the end.

Anniversaries Ass Backwards

Today is the tenth anniversary of the 9/11 attacks.  I've been reading about the reminiscences and memorial events for at least the past two weeks, and have even posted elsewhere about what I was doing at the time and my reactions.  But what I haven't said was crystallized for me by another participant in a http://www.cancergrace.org/ fora earlier this week.  She noted that living  with advanced cancer she sometimes wonders if a given anniversary will not be the tenth or the twentieth, but perhaps the last.  That's a feeling that I can deeply identify with.   

I've been lucky in so far as I've outlived the median life expectancy for someone diagnosed with Stage IIIB non small cell carcinoma.  It will be two years since the diagnosis on September 18, 2009.  Median life expectancy is somewhere between 13 to 18 or 21 months depending on which expert you consult.  I've been able to witness certain milestones such as my daughter graduating from medical school,  but with the ending of the 4th line treatment and moving to yet another chemotherapy that simply kills fast growing cells generally rather than specifically target my particular type of cancer, I'm uncertain how much longer the luck will hold out.  It's not that there is such a treatment at this point, but my cancer seems to overcome  the killing fast growing cells types of therapy rather handily.

Perhaps my children will never marry or have kids of their own, but I expect that to be the exception rather than the rule.  I'd like to be around to be a part of it.  Life isn't fair, as I used to tell them ten years ago when they were younger and I thought I knew better.  But I no longer can employe selective amnesia concerning the fact of my own mortality, as I used to with such facility.  It doesn't have the stark immediacy of what those in the towers faced on 9/11 but it grinds on inexorably.  The trick is not to count the moments, whether backwards or forward, but to experience them for what they offer in and of themselves.

So I don't think I will be going to any anniversary commemorations later today.  I'm just not in the mood.

That was a Quick Ride

Dr. Martins called about a half hour ago.  The chinical trial radiologist reconsidered and agreed that there was too much progression.  So I am off the clinical trial.

The current options so far are:

1) whether the clinical trial  would permit me to continue using MDX1105 outside the trial for humanitarian reasons (any lawyers out there know about these sorts of appeals?).

2) using  Gemcitabine (Gemzar).  Not shown to be very efficacious in late chemo settings.

3) using Sunitinib.  This would be an off label use and there is a question whether the insurance company would pay for this as a result.

So.

The options are not so good.  We shall see.

Strap on your Seatbelts

We are in for another ride on the rollercoaster.


Dr. Martins was very chipper this morning. It turns out that the clinical trial back east has their own radiologist who does an independent read of the ct scans, rather than automatically accept the read of the Seattle Cancer Care radiologist. This time around, the clinical trial radiologist opined that he thought my scans showed stable results (Dr. Martins has no idea if he read the part about the kidney lesion).

So Dr. Martins has a call into the radiologist to make sure that he is certain about this, but fingers crossed, it looks like I still may be in the clinical trial. Will find out Thurs. Dr. Martins thinks as I do, that the clinical trial, at the very least, has slowed the progression of the disease. I'm past the median life expectancy (13-18 months) and I'm still in pretty great shape--no pleural effusions, no spikes in the blood tests, no physical evidence of brain metasteses.  All except for the hypothyroidism which could  be due to age.

So we have at least this little window of hope.

Thanks for all your notes and emails.  They were and are appreciated.

CT scan results not good

I had my ct scan this morning.  Dr. Martins emailed me the results this afternoon with the comment that they 'don't look good.'  I am assuming that I am off the clinical trial.

* Preliminary Report *
~Examination:

CT chest, abdomen and pelvis with IV contrast.
Indication:
Non-small cell lung cancer. Restaging.
Technique:
CTB A15 Chest Abdomen Pelvis
Type of scan: Single phase spiral
Superior Extent: Lung apex
Inferior Extent: Ischial tuberosities
IV Contrast: Positive
Reformats: Coronal
Automated exposure control and statistical iterative reconstruction techniques substantially lowered patient radiation dose.
Comments: None


Comparison:
July 25, 2011

Findings:

Chest:  Supraclavicular region: The necrotic left supraclavicular lymph node is essentially stable in size. It measures 2.4 x 2.5 cm (4/6)
previously measured 2.3 x 2.6 cm
Mediastinum: The necrotic conglomerate of lymph nodes in the AP window is not significantly changed in size. It measures 3.7 x 3.9 cm (4/28). Previously it measured 3.7 x 3.9 cm. Again the necrotic mass is encasing the left pulmonary artery.
New since the prior exam is significant left hilar adenopathy. The largest conglomerate of lymph nodes measures 1.8 x 2.3 cm (3/62)
Lungs: Multiple pulmonary nodules are again noted. All of the nodules are either stable or increased in size. New nodule is seen in the left lower lobe adjacent to the fissure and measures 4 mm in size (3/63).

Representative measurements are listed below.
The soft tissue density in the left lower lobe measures 2. 8 x 2.9 cm (3/85) is not significantly changed since prior.
Left upper lobe nodule measures 1 cm. (3/69) this previously measured 0.9 cm.
Right upper lobe nodule today measures 3 mm (3/24) previously measured 2 mm.
Right middle lobe nodule today measures 3 mm, (3/36) which is stable from prior.

Pleura: Normal
Heart: Normal
Abdomen:
Liver: Rounded hypodensity seen in segment 4B is stable from the prior exam. (4/72) This is too small to be characterized. 2nd
hyperdensity in segment 8 of the liver is also unchanged from prior exam this is too small to be characterized (4/51)
Gallbladder: Cholelithiasis without evidence of cholecystitis.
Bile ducts: Normal
Spleen: Normal
Pancreas: Normal
Adrenal: Normal
Kidney: Round hypodensity in the right kidney measures 9 mm in diameter (4/78), previously measuring 8 mm. Impression there is the
lesion has grown from 6 mm to 8 mm. The lesion measured 2 mm on March of 2011. This rapid interval growth is concerning for a metastatic lesion.
Bowel: Diverticulosis without evidence of diverticulitis
Pelvis:
Bladder: Normal
Uterus/Ovaries the wires cystic mass in the pelvis measures 11 x 13 cm (4/134) this is not significantly changed since prior
Lymph nodes: No retroperitoneal, pelvic or inguinal lymph nodes meet
CT criteria for enlargement.
Ascites: None
Bones: No suspicious focal lytic or blastic lesions
Vasculature: Normal

Impression:

1. Overall appearance of increase disease burden within the chest and mediastinum since the prior study
2. New left hilar adenopathy.
3. Necrotic lymph node conglomerate is stable from prior
4. Multiple pulmonary nodules are either stable or increased, and at least 1 new nodule since the prior exam seen in the left upper lobe
measuring 4 mm in size.
5. Small interval increase in size of the lesion in the right kidney since the most recent study, with a rapid increase in size when
compared to CT scan 6 months prior. This interval growth is concerning for metastatic disease.
6. Two hypodensities within the liver are stable. These lesions are too small to characterize.
7. The left supraclavicular necrotic lymph node is stable in size.
8. The cystic mass in the pelvis is also stable in size