Final Plans

We have now heard from the tumor boards at Wake Forest and John’s Hopkins.  Both are recommending a 3 drug chemo cocktail very similar to the one used to treat Ernie initially.   This combo is supposedly well tolerated with less toxicity than most other combinations. 

We will start Wednesday, December 24,  at Wake Forest's new chemo center in Clemmons.  Ernie will continue to receive chemo weekly for 6 weeks then Wake Forest will repeat the scans to see if the drugs have been effective.  If not, the cocktail will be changed to something stronger for another 6 weeks, etc.  This is a standard-type protocol and is estimated to provide 10 more months of life--a definite improvement over the estimate of "weeks or months" that we were given if we do nothing.  The chemo should also eliminate Ernie's very sore throat and some of the swelling in his face and throat, which could enable him to talk and even swallow food again! 

The new potential wonder treatment is immunotherapy drugs.  These drugs are thought to add significantly to the expected life span and even to be potentially curative.  Hopkins is doing several clinical trials with these drugs.  However, because of Ernie's scleroderma, he is not eligible for these trials.  We asked if they would allow him to follow the protocol but not be in the clinical trial—a practice we observed when we were treated the first time.  The Medical Oncologist who is now in charge of Ernie's cancer care at Hopkins, said that these drugs are "contraindicated in cases of scleroderma because they rev up the immune system" so she could not recommend this approach for him.  

 

Of course, Ernie is not one to take "no" for an answer.  He has already contacted his Scleroderma Doctor for a second opinion.  She is a very practical doctor who understands that having scleroderma only matters if you are alive.  She promised to speak to the Medical Oncologist directly to see if there were any of these drugs she would feel comfortable with.  So we will continue to pray that Hopkins will eventually give Ernie the immunotherapy.  But everyone has been clear that there is no proven cure for Ernie's condition.   It is just a matter of time. 

 

So with this blog, we are signing off to devote our energies to the big fight.  Ten months is an average--our doctor has patients that are alive after 1 and 2 years--and Ernie is determined to beat the odds as well.

 

If you would like to "talk" to him, you can text him (336-407-3800) or email him at fackelmn@ix.netcom.com. 

 

Thanks again for all of your help and support.  You have given us the energy to carry on.   

 

Or Not

I'm sure by now everyone is wondering why it has been so long since the last blog post.  Truth be known, we got the results of Ernie's scans on Wednesday evening.  It has taken us this long to digest the results.

 

 Ernie’s scans show that the tumor at the base of his tongue is quite large (1 ½ to 2 inches).  Nothing showed on the scan he had in May so our local ENT doctor is assuming the cancer is now quite aggressive.  Also, the scans showed activity in both the left lymph nodes (it had been there before but surgery supposedly removed it all) and right lymph nodes—a brand new occurrence.  Finally, there were small lesions in his lungs that might be cancer—but could also be aspiration pneumonia. 

 

Because of the extent of the cancer, surgery is not an option as far as Wake Forest Baptist Medical Center is concerned.  Also, since Ernie has already had his life time allotment of radiation, that is out too.  That leaves chemo—which is palliative not curative. 

We will meet with the local oncologist on Wednesday but, if he tells us this chemo will be like the first round, we will probably decline as Ernie felt so bad during treatment.  The scans have also been sent to Johns Hopkins for their opinion.  There is still a possibility that they can identify  a clinical trial that Ernie will qualify for.    So now we wait for final recommendations and then decision time.  All that will happen hopefully by Friday.  It will be a long week. 

 

 

Plugged

We have been taking it easy, just trying to get to Wednesday and complete the scans.  Most of our time has been spent on symptom management.

A trach is essentially a second nose.  If your nose is running all the time, it is very uncomfortable.  If things get too dry, that can cause problems too.

After stretching Ernies esophagus, the ENT doctor felt Ernie had way too many secretions.  So he started Ernie on a medicine to dry him out.  This seemed like a blessing at first.  Far less "nose" blowing means far more sleep.  However, things took a turn for the worse this morning.

Not long after breakfast, Ernie felt he could not get his breath.  Since the ER is closer than Urgent Care, off we went.  Long story (4 hours) short, Ernie had dried "crud" in his airway (aka plugs).

The solution to plugs is "saline bullets."  We had recently gotten a supply but they came without instructions.  So, the nurse demonstrated.  Basically, you pour sterile salt water down the trach tube into your lungs!  Imagine jumping in the ocean and swallowing at the wrong time.  The idea is to induce coughing.  Works like a charm but not the most pleasant experience. (WHO THINKS OF THESE THINGS?)  It did make Ern feel a whole lot better after he got over it.

Now we can refocus on tomorrow.

Not Time Yet

After three doctors suggested that we speak with The Hospice and Palliative Care Center, we set an appointment for yesterday.  Ernie was in his workshop when the nurse arrived to sign us up.  Not too far into the conversation, she suggested that perhaps calling in Hospice at this point was premature. 

The focus of Hospice is symptom management--something that Ernie could use--in the comfort of your own home.  However, as with most things related to health care, the government calls the shots and the rules are complicated. 

To get Hospice care, you must sign over your treatment to them.  The Hospice doctors then determine your meds and care.  They only provide palliative care--no curative or life-saving measures. 

You can revoke your Hospice treatment at any time, but you must do so before seeking life-saving measures. This means, in the case of emergency, you have to call Hospice and revoke that treatment before you can call 911 or go to the emergency room.  If you don't intend to call 911, this is not an issue but we are definitely not there yet. 

The nurse told Ernie he did not look like her typical patient.  Generally her patients are not well enough to be in their workshops.  Also, since Ernie has his PET/CT scans next Wednesday, if we signed up we would just have to revoke for the test (since it is for curative purposes) and then sign up again after the test.  The nurse thought that the lymphedema massages would also qualify as seeking treatment, so we would have to revoke before each of his twice weekly massages as well. 

While it would be nice to have nurses and medicine come to us instead of running out every day, we are still very capable of doing these things.   So, we elected to continue without Hospice.  Ernie's Internist will have to provide symptom management for now. 

Again

It was difficult to come up with a name for this post.  Friends that have already heard the news suggested that expletives are most appropriate to describe the situation--Ernie's base of tongue cancer has returned. 

The local ENT doctor was concerned about how fast Ernie's swallowing and breathing were deteriorating.  When he first saw Ernie in early October, the doctor was not convinced that a trach was inevitable.  Two weeks later, it was critical. 

The rapid change in Ernie's condition made the doctor suspicious.  So, when he did the trans-nasal endoscopy, he did a biopsy as well.  He was very casual about it--one of these "while I'm in here I might as well go ahead and take some samples" kind of thing.  I think he did not want to alarm us.  Unfortunately, the biopsy confirmed his instincts. 

After several days of discussion with our wonderful medical teams here and in Baltimore, we've decided to pursue two paths simultaneously:

1.  Palliative Care:  this is a dedicated group within Wake Forest Baptist that focuses on symptom and stress relief.   They will make sure Ernie is not in pain, work on helping him get some good sleep, help us get appointments and supplies more quickly, etc.  This will be especially important if Ernie's symptoms continue to progress at a rapid rate. 

2.  Aggressive Treatment:  Ernie will have a PET/CT next Wednesday to determine if the cancer has spread beyond the base of tongue.  Once the doctor's know what areas they need to treat, they will come up with treatment options.  We have asked both the Multi-disciplinary Tumor Boards at Wake Forest and Johns Hopkins for recommendations.  We should have these about a week after the scans.  While the options are more limited and more drastic, the good news is that there are options.

Ernie took the cure once, now he will have to take the "re-cure." 

From Bad To Worse

Despite daily massages, Ernie woke up in the wee hours Monday to find his throat and airway (above the trach) swollen shut.  Because he has the trach, he could still breath just fine but he could not swallow his salvia. 

After more calls to the doctor, Ernie ended up in the OR at Wake Forest Baptist Medical Center again today for an esophageal dilation.  Basically, they sedate you and then stretch your esophagus open again.  Some people require this procedure every few weeks to months; for others, once does the trick.  Given all Ernie's edema, we are unsure how long this will last but Ernie is happy to have some relief. 

There seemed to be a LOT of surgeries happening today so Ernie's doc had to use the Brenner Children's Hospital Operating Room.  Ernie was in rare form.  After talking the nurse out of a whole vile of pain killers post surgery, he told her "I haven't felt this good since Woodstock."  I thought the nurse would split a gut.  As he was leaving, she rewarded Ernie with a stuffed bear named "Lucky."  We are hoping that is a good omen.