I really didn't want this website to focus on the final months.  This will be the only place I put anything related to the big "C".  I wrote out the details in a somewhat clinical fashion just because I thought it important to get all the facts right.  You or someone you love may, god forbid, have some association with melanoma in the future and if just one person is better prepared  - it is worth it.

Kerris’s journey through cancer

 Kerri had a small lump on her back.  She barely noticed it but knew it was there.  Both her primary care MD and her long-term dermatologist believed it was a benign cyst.  She has never been a fan of being cut by doctors so it seemed fine to forego a biopsy.  This situation lasted over a year.  It was easier to just assume it was nothing.

In mid-2012 she noticed a lump forming in her right axilla (armpit).  After a short time of debating she went to her doctor who then asked her to see a surgeon at the Toledo Clinic.  Dr. Palmer examined her 7/26/2012 and also noted the lump on the back, and its proximity to the 23 year old original site of her first melanoma.  He convinced her to get both locations biopsied right away. 

On 8/1/2012 we received the bad news from Dr. Palmer.  Preliminary biopsy results were positive for melanoma.  He ordered a body (thorax) CT that day.  Two days later we were called for an appointment with an oncologist at Toledo Clinic.  We met Dr. Phinney, who discussed the biopsy and CT results with us in more detail.  There were 5 specific spots of concern on the CT – the primary tumor on the back, the larger one in the right axilla, 2 small ones in the right lung and one very small one in the right thorax outside / above the lung.  He stated that this constituted a diagnosis of Stage 4 melanoma.  He recommended against any type of surgery or radiation and encouraged us to seek specialized care and possibly a clinical trial.  He mentioned that he had heard of some trials which might be a good choice in the San Antonio, Tx area.

I had retired from my job at Fermi in late June and we had just sold our house.  We were preparing to move to Jacksonville, Fl.  We started researching cancer treatment locations and it seemed that San Antonio, Houston, Dallas dominated in the specific area of melanoma.  Given the large number of ongoing and planned trials at MD Anderson in Houston we decided to move there.

We arranged for a rental house near Sugar Land, Tx, a suburb just SW of Houston.  Krista flew up to help us and we packed our stuff.  Many thanks to my sister Cathy and brother Ron for all their help at that time also.  We drove to Houston and moved in August 27.  Krista’s help in all this was invaluable, she drove one of the vehicles and was a tremendous help in the moving in and unpacking.  Kerri’s first appointment at MD Anderson was scheduled for Sept. 10th.

Meanwhile the tumor in her right axilla was growing at an alarming rate and actually developed an ulceration.  We called MD Anderson several times trying to pull the appointment ahead but they simply did not have an opening.  The pain from this got worse every day and on Sept. 8th we went to the ER at nearby Memorial Hermann hospital.  The ER docs there did not have strong knowledge of her disease but did attempt to “lance” the ulceration.  They were quite shocked when almost no fluid drained, it was simply a void.  They did prescribe some pain medication and an antibiotic. The pain meds helped enough to get her through the next few days.

Our appointment on the 10th was downtown at the MD Anderson main building (9th floor Melanoma and Skin Center) with Dr. Kevin Kim.  Dr. Kim had already reviewed her Toledo Clinic reports and tests, as well as blood work from that morning.  He examined Kerri and then discussed treatment options.  He strongly recommended she begin immediately on a drug called Zelboraf.  Kerri was lucky enough to have the specific BRAF genetic marker that made her eligible for Zelboraf.  He said that with use of traditional chemo (interleukin 2 or 4) that the odds of these tumors reducing were around 10% but with Zelboraf it might be as high as 75-80%.  Our insurance approved the Zelboraf (app. $12,000/month) and she began taking the max tolerable dose within a day.

After a few weeks there was noticeable reduction in the visible tumors (back and right axilla).  Kerri had a spinal and brain MRI on 11/14/2012, done as a precautionary measure to rule out (hopefully) any existing brain involvement with the disease.  At the appointment with Dr. Kim on 11/15/12 we were told that the MRI had shown some questionable spots.  They could not tell if the spots were scan “artifacts” or actual lesions, but they appeared to be only in the leptomeningeal region (skin tissue surrounding the brain cavity).  It was decided that she would have a lumbar puncture for a spinal fluid sample. 

The lumbar puncture was done on 12/10 and was very painful.  In fact, Kerri complained about residual pain from that for several weeks.  She also decided that she would never again have that procedure done, under any circumstances.  The spinal fluid test results were available within a few days and showed clear, no evidence of melanoma cells.  Based on the doctors statements and the clear spinal fluid sample it was assumed that the spots on the 11/14 brain MRI were artifacts and not active tumors.

Kerri had her first infusion of ipilimumab (Yervoy) on 12/13/2012.  Other than some minor discomfort with the IV it was a pretty uneventful experience.  Made weekly trips to Sugar Land MD Anderson for blood work after the Yervoy treatment began.  The simultaneous use of Zelboraf and Yervoy is still not well known and frequent blood tests were necessary to watch for any liver or kidney problems.

We began making plans for Christmas, although it was just going to be the two of us.  On Christmas Eve Krista let us know that she had been released from Waterford a little early and was on her way.  Louie also made it over and we had a pleasant Christmas day dinner and evening.

Had the 2nd Yervoy infusion on 1/3/2013 and it again went pretty well.  Met with the doctors on Thursday 1/24/2013 and she complained of a mild headache and some vision problems .  Dr. Kim agreed to a plan to reduce the Zelboraf dosage if the pains got any worse to see if there was any improvement.  The exam found nothing else important so we proceeded to get the 3rd (of 4) Yervoy infusion that evening.

On Friday the 25th the headache started to get worse so she began taking Tramadol for the pain. By the next day the pain was not getting any better so we began boosting with advil and it seemed to help.  We also dropped the Zelboraf dose from 4 pills to 3 to see if that might help.  She struggled through Sunday and Monday but the headache pain was severe and nothing we were doing seemed to help.  On Monday night at around 6:00 I decided to take her in to the MD Anderson ER.  We waited in chairs for several hours and finally got into an exam room around 1130 PM.  The ER doc (Carmen Gonzalez) examined her around 1230 and ordered a CT scan.  At around 3AM (1/29/2013) she came back to the exam room and gave us terrible news.  Kerri had several (she said maybe 8-12) significant tumors throughout her brain and they were causing edema, swelling which was the source of the headache pain.  She had already ordered a steroid IV to reduce the swelling.  We had to stay in the ER exam room all night because they had no rooms available but the important thing is that be around 7AM her headache had all but disappeared.  We were both in shock all that morning and no one got any sleep.

She was admitted and moved to a 10th floor room at around 1130AM.  Just prior to moving she was examined by 4 doctors from the Melanoma center, including Dr. Goodman and Advanced Practice Nurse (APN) Nydia Gonzalez.  He ordered a higher resolution MRI to confirm the CT results and provide a better view of what was going on. 

Kerri had the MRI done at 7:30PM that evening and slept throughout the night, pretty much pain free.

At around noon on Wednesday the 30th the same 4 doctors visited and told us that the MRI showed at least 20 tumors distributed throughout the brain, with the largest measuring around 3 cm.  They told us that targeted radiation (gamma knife) was not an option and that chemo was also not recommended.  They suggested whole brain radiation (WBR) treatment but wanted us to speak with the RadOncology specialists about it.  The general tone of the discussion was that her condition was very grave and fairly untreatable.  That afternoon we met with several teams of doctors in various specialties.  The two RadOncology doctors were far less optimistic than Dr. Goodman had been.  They were very professional but also very blunt.  The WBR was not going to extend her life but possibly ease the symptoms, i.e., improve quality but not quantity.  They stressed this several times.  They described in detail the WBR regimen – 2 long days of fitting and creating a wire-mesh and plastic skull cap followed by 12 days of actual radiation treatment (about 2-3 hours each).  They described the likely immediate side effects as well as longer term effects.  A little later Nydia came to visit and, with a little prompting, helped us to understand what to expect with no further treatment.  An optimistic estimate was 2-4 months and she described the progression and likely scenarios.  Melanoma brain tumors are notorious for causing brain bleeds, any of which could cause a multitude of symptoms up to and including a final coma. 

We discussed our options over several hours and with lots of tears.  In the end Kerri expressed that she had no desire for any more painful and difficult medical procedures and was willing to transition to a purely palliative (pain management) treatment.  The WBR process scared her and she couldn’t imagine having to go in like that every day for 2 full weeks.  We met with an MD Anderson Case Manager (Sharon Moreland) who agreed to help us shift to home hospice care. 

Kerri was discharged at 7PM on the 30th.  We had pill form steroid (Dex) to take home and continue using.    Krista came later that day to stay and help out and Eric made it to town the next morning.  We selected Aseracare for the hospice service and met with them on Feb 4th.  Kerri was experiencing pretty intense pain in her upper back and the hospice nurse (Dee) set up a more aggressive pain med schedule for us.  Dee returned on Tuesday the 5th for a follow-up visit and Kerri noted that her pain was much more under control.  By Wednesday night she was no longer able to get to the bathroom and having difficulty having any sustained coherent conversation.  On Thursday the 7th we began using Fentanyl Patch and her joint / back pain was completely gone.  She did start complaining of a feeling of pressure in her head, not really pain.  Friday was a pretty good day, she seemed much more alert and engaged.  She sat up and ate a healthy serving of Beef Broccoli and rice (her request) with us for dinner.  Friday night to Saturday morning was not good.  Some nausea and much
diminished faculties.  Saturday daytime was slightly better and her family (sister Kathy, brother Tony and his clan and her mom) arrived to visit.  She had some interesting moments of clarity but overall she was sinking.  Saturday night was horrible, more nausea and now headache pain.  Her breathing seemed to become more labored although it was steady and she was definitely sleeping.  Krista and I cleaned up her last nausea episode at 4AM and we went off to our beds.  When I got up at 7:45 she was gone.