Update pre-Denver

Yesterday got up to see Seth and his girlfriend Angie off.  They are driving back to the Twin Cities.  Had a wonderful, but hectic time with them.  I hope I didn't wear them out .

But after they left I took myself to the emergency room at UW.  The lump on my back had developed an abscess and was bleeding and expelling pus, so I called my Dr. daughter and she told me to be seen.  So I did.  The ER doctor lanced the abscess and irrigated it then packed the wound in gauze and sent me home. No idea if it is a tumor or a cyst now.  Maybe a biopsy can eventually be done on the remnant.  I do have a meeting with an oncological surgeon for Nov. 1 to do just that.  But sometimes things get away from you.

Then today was my ct scans.  While drinking the ct contrast agent (which takes an hour), I did a deposition by telephone.  A great way to pass the time.  Far better than sitting around focusing on how bad the drink tastes.  Afterwards, went up to Dr. Martins' office and two nurses, Karen and Heather repacked my wound.  This time without lidocaine.  Ouch.

But just to balance things out, the ct scan results indicate that the tumors are stable or shrinking a bit.  So there's a bit of celebration before heading off to Denver this evening.

More later.

No chemo this week

I showed up at the appointed time yesterday but the blood tests showed that my white cell count was below the required level, so chemo was terminated.   Frankly, I was relieved because the side effects of the Gemzar are not much fun.

This is the fifth type of  treatment I've undergone for my lung cancer.  The hope is not for a cure, but for either stopping progression or tumor shrinkage.  However, with each type of treatment, the odds for improvement diminish as the cancer becomes resistant to treatment.  Several weeks ago, my daughter expressed concern for continuing treatment if there were no good results.  Essentially I would be enduring the side effects of chemo for no payoff. 

We won't know if the treatment has any effect until I have ct scans on the 17th of October.  I am already steeling myself for the probable bad news, given the odds.  I emailed some friends to let them know that this might be the end of the road as far as treatment goes.  But, I am blessed with friends who will not take no for an answer. 

My friend, Mary Pat--we were roommates back in 1978 before she went to graduate school in Chicago--is the Administrator of Clinical Research at the University of Colorado Hospital in Denver.  Denver was a center for TB patients back in the last century when it was thought that breathing cold dry air in the mountains was one way to treat tuberculosis.    And over the years this part of the country has become one of the leading centers in the treatment of  lung diseases.  One of the doctors that Mary Pat works with is Dr. Ross Camidge, a noted authority on crizotinib and the ALK rearrangement in NSCLC tumors.  She made an appointment to see him for a second opinion on October 18th.  Perhaps there are some clinical trials that he is overseeing that may be applicable to my situation.  So, I will be flying to Denver the evening of  October 17th to see if there isn't a trick or two left in the grab bag.   My oncologist knows Dr. Camidge and is very supportive of this plan. 

Many, many thanks to Mary Pat for her help and friendship.  Fingers crossed.

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

Learning to Live with Limits

I went for my 3-month check back with the ENT who had done my laryngoplasty at the end of May.  I've held back from talking about this because I wanted to wait until the appropriate time had passed and I'd had  a follow-up laryngoscopy to confirm it.  So I did those this morning.  And it's clear now. I am not getting my voice back in any major way.  In other words, I am part of the 3% for whom this surgery really didn't work.  Oh, there's a bit more fullness of tone, but no real increase in volume and by the end of the day my vocal cords are exhausted from speaking. 

Speaking is what I do as an attorney.  There's really no way out of it.  I'm in a courtroom or in depositions, or on the phone in conferences.  All of which require a decent voice to be heard by the judge, the court reporter, the other attorney, and the witnesses.   The news was hard to take.  Oh, I could have another injection of Radiesse to see if that would temporarily help things, but it would only last at most 6 months.  Or, I could try for a second surgical implant.  Dr. Merati told me that of those whose surgery does not work out, about half of them choose to do nothing and half decide to go through with a second surgical intervention.  There's only one study out there in the medical journals about second surgeries and its findings were that 10% of those who go through the process again, end up worse than they started while about 70-80% do better.  Given that I'm already in the 3% category for 'not so good results,'  I am thinking that this is it.  End of the road on trying to regain my voice.

Despite my daughter's best efforts to cheer me up and try to tell me that it's not that bad, I'm having a hard time dealing with the reality and finality of the situation.  I'm sure that I will eventually pick myself up and get on with things, but tonight I'm feeling  sorry for myself.  Hopefully,  this will not last long.   

My apologies to all.

Saturday video to enjoy.

A commercial from Thailand.

Greenlake Wiener Dog Parade

Boy, did we have some fun this past Saturday at the Greenlake Wiener Dog Parade.  You can catch all the photos here.  Scooter and Truffle are No. 1 in the lineup, modelling their very chic Macalester College leashes.    We had over 30 dachshunds and their doting owners.  I have to say I was especially taken with the puppies and also a full sized dachshund named Nicholas, who has the finest confirmation I've ever seen on a dachshund of any size.

The next Greenlake parade is September 18 at 10am.  If the weather permits, I would love to have you come with me.  You just do not know how fun and chaotic it is to be surrounded by dachshunds of every color and size and temperament!

I am thinking I want to see this movie

http://www.imdb.com/video/imdb/vi727620889/

I am also thinking I'd like to see what Roger Ebert has to say about it when it comes out.  He is one of my heroes.

Quick Update--Still in Clinical Trial

I spoke with my daughter, the med/peds resident in Minneapolis, last night.  She was much more sanguine about the renal lesion and said that they are quite common as non cancerous growths.  And, during our conversation,  I remembered that the traditional metastatic growth path for lung cancer is lungs, liver, brain bones.  Not kidneys. 

I met with my oncologist this morning.  At first Dr. Martins recommended terminating the clinical trial because there continued to be progression in my tumors' growth.  In response I noted what Sarah had told me about renal cysts and that I had an ovarian cyst that seemed to be non cancerous as well.    I mentioned the pathway that lung cancer normally takes, and he conceded that kidneys were not part of that.  Then, I asked him if it were possible that the progression of my lung cancer could be slowed down by the clinical trial, and  might rev up if I go off.  He said that that was a possibility.  Finally, he said to think about it this way--if in 6 months I felt the same overall as a I do now--would that be a good thing for me?  I said yes, I thought it would.  So the clinical trial folks were contacted back in New Jersey, and they said it would be a discretionary decision on Dr. Martins' part. Given my discussion with him and my feelings on the matter, he agreed to continue with the clinical trial.

We have nothing really to go on at this point other than my intuition that this is the path to take.  But I am willing to take the risk.  In addition, the clinical trial manager noted that according to my blood tests from two weeks ago,  my thryroid gland has  been working in overdrive but not producing the hormone needed.  This has been a side effect from the monoclonal antibody in other participants. Today's results confirmed the thyroid imbalance,  so I am being prescribed synthroid.  One symptom of low hormone production, I was told, is hoarseness.  So there is something to consider as a possibile cause of my continuing hoarseness while speaking that might have nothing to do with my surgery two months ago. 

So, while I don't know where this is ultimately going, I am feeling much encouraged.  And thanks for all your good wishes yesterday both on the blog and privately.  They really helped.