A SHIFT IN THE WIND

We were eagerly looking forward to getting the final pathology report, certain it would confirm all the other scans and path reports that Dave was cancer-free.  That was not the case.  In one of the two lymph nodes taken from Dave's clavicle area, a melanoma tumor was found. That changes things.

I could speculate about what options we'll have, but I think it's better to wait until we have a chance to talk to the doctors again, now that we know his melanoma is in-transit.

Jimmy & Diane McCallum and Dave

We found out Wednesday, Aug. 28th, just before we were having friends over for dinner.  Thursday Dave started making phone calls to get new appointments, and we both had things we were doing with friends in the afternoon.  Friday there were more calls, and our fabulous son-in-law went to the hospital on his day off (!) to (among other things) get in touch with Dave's oncologist.  Friday afternoon our friends Jimmy and Diane McCallum arrived from Macon to spend a few days with us.  Their timing could not have been better.  Dave and the McCallums have been friends since long before I knew him. It was great for Dave to be able to relax with people who know him so well.

I keep reminding myself Dave has a very unusual history with melanoma, with 2 small tumors in 7 years.  We'll keep hoping and praying this latest revelation is fairly inconsequential.  We're not in denial, we're hopeful!

GREAT RESULTS!

Finally, Dave heard from his surgeon's office with the good news that no cancer cells have been found in the lymph nodes that were removed on Aug. 7th!  It is just what we expected, yet we were still on pins and needles waiting for the confirmation.  As it turns out, the pathologist is doing two types of testing; the first type is finished but the second is not.  That means we still have more results to come, but we still expect a 'clean' report.

I don't know why a second set of tests are being done.  Dave talked to Dr. Ross's PA and I didn't; I usually have a lot more questions.

This diagram shows exactly how the sentinel lymph node biopsy was performed on Dave.  Even the location of the tumor is where Dave's tumor was.  I had seen these pictures earlier, but didn't focus in on them, so this should have been posted earlier.  Oh well, live and learn.  The only difference was that Dave had a second injection of the radioactive substance, since the first amount didn't drain to lymph nodes (having gotten 'rerouted' by his scar tissue) and he had a second incision once Dr. Ross saw that the substance flowed to a second set of lymph nodes deep under his clavicle.

The dye that is referenced in the first picture is a blue dye.  Dave has an allergy to an ingredient in it, so only the radioactive substance was used, though they initially planned to do both.  Now a blue dye is involved in the second set of testing on the node (the results we haven't yet heard).  I don't know if it is the same blue dye or not.

Dave has been recuperating extremely well.  After several days of feeling sluggish in the afternoons, he's back feeling like himself.  Not only that, he decided to start swimming for some regular and hopefully ongoing exercise.  Naturally I was concerned about the arm movements pulling at his incisions, but he said he doesn't feel any pulling, and he feels the pull in his back rather than the front.

His SteriStrips are coming off at the edges but have not fallen off.

And here he is, back from his morning swimming!

HOME RECUPERATING

Dave had his biopsies done on Wednesday, August 7th, and today, Monday the 12th, is the first day he's felt like he's had a 'normal' day, energy-wise.  Until now he's been very tired in the afternoons, quite understandable after being under anesthesia.

We spent all day Saturday and about 5 hours Sunday in the car for our drive home.  Thank goodness for books-on-CDs.  We listened to Dan Brown's The Lost Symbol and Vince Flynn's Extreme Measures.  They sure help the time go by!  Dave wore compression hose (which were given to him in the hospital) since he would be sitting for so long, to help avoid blood clots.

He has two almost three-inch incisions, although they look much bigger and scarier to me. He has dissolvable sutures, and SteriStrips, which is the bandage (just a tape).  You can see the blood underneath - yuck - why did I ever start out majoring in Nursing at UConn?  He is not supposed to pull the SteriStrips off, as they are holding his skin together.  They should fall off eventually.  He had to wait 48 hours before taking a shower, and he could not wait to get into the shower when the time was up.

Dave has taken only one pain pill, and that was because I made him, on Wednesday night. He insisted he didn't need it, and I insisted it would be good for him to be able to sleep.  My argument fell on deaf ears after that.  He's feeling quite well, though of course his incision areas are tender.  He said his chest feels somewhat 'heavy' this evening, and I'm thinking it should be another early-to-bed night for him.

Dave was out today, back to his care-giving for Sandy.  He picked up her meds, made phone calls about her medical bills, stopped by to see her, and did a few other errands.  I think he really deserves an early evening!

We are now awaiting results of the biopsies, though we will be extremely shocked if they do not come back negative.  I will update this blog as soon as we hear anything.

BIOPSY DONE

Dave was taken to the OR at 2:10 and I was told it would be about an hour until he would be in Recovery, then another hour until he's ready to go.  Well, 3 hours later I asked for an update and was told he was still in surgery!  Finally at 5:40 I was told he was in Recovery and I could see him.  A little concerning!

There were two delays.  First, the radioactive injection done at the new surgery site would not drain, so Dr. Ross had to order more of the radioactive substance.  They give you only enough for the surgery so it won't be sitting around unused, which meant more paperwork and waiting for delivery of the second batch.  It arrived, and Dr. Ross injected it in Dave's old surgery site, just above the new site.  It went merrily on its way, but surprisingly, it did not all end up in the axillary lymph nodes (armpit), some of it went to a set of nodes under his collarbone!  Dr. Ross said this was unusual, but since that was the path of drainage, he felt he had to biopsy those lymph nodes, too.  Hence, the second delay; a second incision that was not expected.  It was a very deep cut, and he had to go through muscle.  He said this incision will cause Dave more problem than the one in his armpit.

One lymph node was removed from Dave's armpit and two from his collarbone area.  It will be 5-7 days before we get the results, though of course we are expecting him to be as clean as a whistle.

At 5:40 Dave was in Recovery, and it was 8:00 before Dave was awake enough, dressed and transported to the front door.  In the meantime I went to the pharmacy for his pain medication and got all kinds of care instructions from the nurse.

When we got back to Jon and David's, there was a Mexican take-out dinner waiting for us! Dave ate yogurt and a plain chicken fajita, but I gobbled up all the fixings.  What a treat after a very long day.

ILP DECISION

I'll cut to the chase; Dave is not having the Isolated Limb Perfusion.  After a long discussion with Dr. Ross' PA about the pros and cons of ILP, Dave felt the scale tipping toward yes. Then Dr. Ross came in, asked Dave questions about the sequence of events that brought him here (going back to his first tumor), gave him a skin exam, and said he didn't think any further treatment was necessary at this point.  He said it's rare for a patient to go 7 years without a recurrence as Dave did, and considering it was so close to the original spot, and the PET, CT and MRI scans show no evidence of the disease, he believed it would be better to wait and see rather than over- treat.

Some thoughts were repeating themselves in our minds: if Dave did not have the ILP, and he gets another recurrence, would he regret his decision, would he regret not being more aggressive, and would he be constantly worrying?  Would he be a happier person if he had the ILP just because it seems to be the best possible treatment available?  Dr. Ross said he would do the ILP if Dave really really wanted him to, but the fact of the matter is, if Dave gets a recurrence in his arm, he would still have the surgery and ILP options.  If he gets a recurrence anywhere other than his arm, the ILP would not have prevented that anyway.  Dave is a very healthy 65-year old, he is in the 1% of the melanoma population that went over 5 years without a recurrence, and the ILP does carry risks.  Why not carry on, live a healthy life and be vigilant about monitoring?

Dr. Ross performs more ILPs than anyone else in the USA, sees thousands of patients, and since he felt ILP was probably too aggressive, Dave was happy to comply with his recommendation.

Dr. Ross did recommend having a sentinel lymph node biopsy done, which is scheduled for tomorrow instead of the ILP.  This is really more of a double check - the scans showed nothing, but a biopsy will be even more accurate.

If you want more detail, here is a good explanation of a sentinel node biopsy:
http://www.cancer.gov/cancertopics/factsheet/detection/sentinel-node-biopsy

Dr. Ross noted the dermatologist and the surgeon in Chattanooga (from Dave's first tumor) both thought Dave's tumor looked like a secondary site, but could not find a primary site.  That leads to two possible conclusions: 1) The primary site 'regressed' yet a distal site was formed, or 2) The first tumor actually was the primary site although it didn't look or act like one.  Both scenarios are very unusual, and that coupled with the fact Dave went 7 years without a recurrence leads Dr. Ross to believe there is a chance Dave could go another very long time without another recurrence.  So again, he recommends the sentinel node biopsy and after that, structured monitoring.

Oh what a relief it is.

LAB, CT SCAN, CONSULTATION

Today Dave had lab work done - results were "perfect," CT scan - results were no change to the spots on his lung and liver, which is just what we wanted, and finally, a second consultation with the melanoma specialist Dr. Bedikian.  We were trying to ascertain whether Dave should or should not have the ILP.  Dr. Bedikian's attitude is, "Why wouldn't you?" He emphasized that if Dave's melanoma is 'in transit' the ILP will have no effect on his longevity. If it was a local recurrence and not in transit, the ILP reduces the risk of recurrence by 80%. What is the risk of recurrence without ILP?  That seems to be the biggest unknown, as today he said 30% although that is a general number, and Dave is at higher risk because 1) he has already had one recurrence and 2) it was under his skin which make it more likely to be in transit.  Confused?  So are we; as we have heard and read many different probabilities of recurrence.  We have to keep telling ourselves that no one knows the answers, and we have to do what feels right after ingesting/digesting all the information we can.

Dave's wrist after injection of contrast for CT scan

The problem with trying to treat melanoma is that since it is such an aggressive disease, and yet every person (body) is different, it is extremely hard to tell if treatments are effective, or if the disease would have acted the same regardless of treatment.

We asked how well ILP patients recover and if most regain full usage of their arms.  Dr. Bedikian said the most prominent problem he sees is skin damage, though over time it heals.  He also said he may be seeing only the patients that are the healthiest after the procedure.  He doesn't do the procedure, and many of the patients (like Dave) would be returning home rather than to him for follow-up, and if they require different and/or additional treatment, they may go to different specialists for on-going care.

We meet with Dr. Ross tomorrow; he's the surgeon who performs the ILP.  I'm sure he can provide more specific and hopefully more useful information.  Dave's ILP is scheduled for Wednesday, though he can cancel tomorrow if he feels it is not the right thing for him.