WE HAVE A PLAN

We met with our Savannah oncologist today.  I'm going to call him Dr. S (for Savannah) from now on. The only reason I hesitate to give his real name is because if I don't accurately describe what he tells us or if I don't precisely describe his treatment plan, I do not want you to question his ability.  I may get things wrong or simplify too much, and that is my error.

Back to the visit.  We told him what our MD Anderson doctors recommended - the 'standard of care' adjuvant therapy - which was what he also recommended.  Dr. S also told us radiation was an option, and MD Anderson told us surgery was an option, but Dave has decided to go with the interferon therapy.  He is ready to get started and hoped he could be in the chair on Monday, but Dr. S said there were a few things that had to be done first.

One, we have to be sure all the insurance plans are notified and are in place.  This should be no problem with Medicare and Dave's very good supplemental BC/BS plan he was required to purchase when he decided to stay on TVA's plan so I could be covered.  Whew.  (He has quit complaining about the expense of the supplemental after seeing the first round of EOBs.)

Two, he has to speak with a Nurse Educator about the process, the medications, the administration, etc. His appointment with the nurse is next Friday. He will also get a vein pick in his left arm (his tumor was in his right arm) so the nurses don't have to find veins to inject the IV every day.

Third, they had to draw blood for baseline data, so they can watch, in particular, his liver function and blood cell counts.  Dave asked if that could be done today, so after talking to Dr. S, he had his blood drawn.

Assuming the other two items get done next week, Dave will start his therapy on Monday 10/7.  He will have infusions 5 days a week for 4 weeks at a high dosage level.

I asked Dr. S if Dave can take benedryl (minimizes his snoring), have a cocktail, and get a flu shot.  He said, Yes, yes and yes.  From what I read on the internet, I was surprised he is allowed to have alcohol.  Dr. S said 1/day is okay, although Dave may lose his taste for it.

I asked about anti-depressants, and as I said to Dr. S, Dave has never exhibited depression, but I've read it is a very common side effect.  Dr. S said anti-depressants are a routine part of the treatment, as is anti-nausea medication.

It was an educational and motivational meeting, and now we'll have to cool our jets for another week.  It gives Dave time to get in more kayaking, swimming, loading up his iPod with books to listen to, etc. etc.  It will be a busy week!

Testing, Testing

This is actually Molly writing, and this is a test post to see if I can make it work.  Mom and I figured there are going to be times over the next few weeks and months where she'd like to keep people updated but won't have the time.  This way I can do it.  Here's hoping this actually goes up when I push the 'publish' button!  Best, Molly

UPCOMING APPOINTMENT

Dave has an appointment with his Savannah oncologist this coming Friday, 9/27.  We will be discussing the what, when and how's of his adjuvant (additional) treatment.  It's been recommended both by this doctor, as well as the melanoma specialists at MD Anderson, that Dave have the "standard of care" interferon treatment.  We've been referring to it as chemotherapy, but technically it is not, it is immunotherapy.  However, it is toxic, with many potential side effects, and is given intravenously for 20 days (Monday-Friday for four weeks) so people tend to call it chemo.

After the first month, Dave will inject himself 3 times a week with a lower dosage for the next 48 weeks or more.  If he gets through the first month (the 20 treatments) without many side effects, he may instead get a higher dosage injection just once a week instead of the 3x/wk. To be determined...

Dave is eager to get started.  He says, "The sooner I get started, the sooner I'll finish."  He has a great attitude and is certain he will not be an invalid.  He is out kayaking today, and has been swimming almost daily to get his strength up.  I like his attitude!

NO SURGERY!

Dr. Ross (MD Anderson surgeon) called this morning to further discuss surgery with Dave.  We had put together a list of questions to prepare for the discussion, which mainly centered around the risks and benefits of removing more lymph nodes in addition to having chemotherapy.  Although Dr. Ross fully and carefully addressed our concerns, he said it sounds as though Dave would prefer to forgo surgery.  He (Dr. Ross) said because there were so few melanoma cells found last time, he did not feel strongly about the benefits of surgery, so let's just go with the chemotherapy.  That's what we'll do!

Dave has a call into our local oncologist's office to get the chemo set up.  It feels good to have a plan!

SURGEON'S PHONE CALL 9/18/13

We FINALLY heard from the surgeon who performed Dave's Aug. 8th lympadenectomy.  As you may recall, Dave's case was to presented to the conference of MD Anderson multidisciplinary melanoma specialists on Sept. 9th and we've been waiting to hear the results of the discussion.  In a nutshell, the recommendation is for chemo (interferon) with the same schedule as our local oncologist described.  The uncertainty was whether or not to do additional surgery to remove more lymph nodes.  Dave is weighing the pros and cons today, and we will talk to the surgeon again tonight to either schedule surgery or just a follow-up visit to Houston.  Dave will have the chemo in Savannah.  We don't have a timetable for that.

I would like to provide more detail, but I have a clay class to get to this morning.  I'll write more after our discussion with Dr. Ross this evening.

ONCOLOGIST APPOINTMENT IN SAVANNAH

Today we met with Dave's local oncologist.  The doctor had reviewed the results of Dave's lymphadenectomy at MD Anderson, and had talked to Chad, therefore was aware of the finding of melanoma in one of the lymph nodes.  He spent quite a bit of time talking about options, but was quite clear he was supportive of Dave's relationship with the doctors at MD Anderson.  In fact, he was very interested in what recommendations they were going to give Dave.  We are grateful he is supportive and not at all put off by the fact we are consulting doctors in another cancer facility.

He said it was possible but not probable that with the removal of the cancerous lymph node, all the melanoma was removed.  A PET scan may not pick up on a tumor until it is about the size of a pea, so although Dave had a negative PET scan, there is no way of knowing if there are more melanoma cells floating around that have not yet developed into a pea-sized lesion.

Bottom line:  his recommendation for treatment would be radiation and chemo (interferon) which would last 12-18 months.  He was careful to give us several caveats, including the fact that metastatic melanoma is not curable, radiation will not be able to kill any cells that aren't in the target area, and interferon is generally recognized to lower the risk of recurrence by only 5 "to maybe" 10%.

There is a question of whether the discovery of melanoma in Dave's lymph node, and only his lymph node, technically qualifies him as having metastatic melanoma.  Whether or not he has metastatic melanoma can make a difference in qualifying for clinical trials.  Dave has not been eager to participate in the one clinical trial for patients with non-metastatic cancer, but he may be interested in one for patients with metastatic melanoma that has been getting good results. That trial is not being conducted in Savannah, however.

Now we have our local oncologist's recommendations, and we will know what MD Anderson has to say early next week.

WAITING FOR INFO

Dave's case was presented to MD Anderson's Melanoma Multidisciplinary Conference on Monday 9/9/13. At this conference, there were melanoma surgeons, oncologists, pathologists, radiation oncologists and radiologists. The purpose was to discuss the best treatment plan whether it be surgery, adjuvant systemic treatment, or observation.  To date, we have not heard the results, but we've been told Dr. Ross, Dave's surgeon, will be in contact with him 'early next week' hopefully the evening of Monday 9/16 or Tuesday 9/17.

As I mentioned in the previous post, Dave was tentatively scheduled for another lymphadenectomy on 9/20, but that date has been removed from the online schedule.
Dave is not now scheduled to see Dr. Ross until February for a 6-month follow up of his lymphadenectomy.  We are assuming there will be no further surgery, at least for awhile, but we don't know for sure.

In the meantime, Dave has an appointment with his Savannah oncologist tomorrow, to discuss the results of his last surgery, and learn what this doctor recommends for treatment.
Hopefully, we will get the phone call from Dr. Ross on Monday or Tuesday.  We're waiting...

PLANNING TIME

On the beach at Wild Dunes 9/7/13

We left for the beach Wednesday with Dave's sister Sandy, returning a few hours ago.  We stayed at Molly and Chad's "Seascape" in Wild Dunes.  We had perfect weather, daily long walks on the beach, time at the pool in the afternoons, a trip into Mount Pleasant to have breakfast with Mom and today we ate lunch at Red's Ice House on Shem Creek so we could watch the boats and kayaks.  It was a great four days in a fabulous place; thank you Molly and Chad!

Our spirits were lifted by an email Dave received minutes before we left on Wednesday.  We learned Dave's case will be presented to a council of multidisciplinary melanoma specialists at MD Anderson this coming Monday.  They will let us know what their recommendations for future treatment or monitoring will be.  Dave is tentatively scheduled for more surgery on 9/20/13, to remove additional lymph nodes in the more difficult spot, under his clavicle.  The number of lymph nodes known to have melanoma tumors is a way to stage the progression of the disease. Dave had melanoma in one of the two removed in that area, but it sounds as though they want to see if that means 50% or if it means one out of maybe five or so.  We are learning.  The meeting on Monday may change the schedule for surgery.  I will post what we learn as soon as we get the news.