Another Relapse

It’s been entirely too long since I last posted.  There are many reasons for that – not the least of which is my general state of fatigue and burn out on posting about cancer and the roller coaster we ride all the time.  I have felt the need to keep you up to date on what’s been going on but haven’t had the time, energy or usual calling to sit down and put it into words.  Until now, that is.

A few days ago I had prepared a beautiful post about bone marrow transplant (BMT) and was very close to publishing it.  It was full of details about what we’ve been doing over the last month and what our journey ahead looked like as we anticipated finding a donor etc.  Thankfully I didn’t post it and don’t have to back track.  Everything has changed for us so now I’ll recap and bring you up to date on where we find ourselves and what’s going on with Phil.

A little over a week ago Phil and I met with young Dr. Kossman and Phil won approval to fly to Atlanta to see his friends for a long weekend.  At that visit he told the doctor that he found some new lymph nodes above his left clavicle.  At the time they were like small peas in size and none of us were certain of their significance – they could have been reactive to the pleural effusion he just had or to the mild infection he’d been treated for.  Of course, they could mean recurrence of the lymphoma but they were small and we all hoped that wasn’t the reason.  The doctor told him to go to Atlanta, have a great time, don’t mess with the lymph nodes and he'd see how they looked when he got home.

Phil did have a great time and returned home thankful to have seen his lifelong friends.  But he returned home tired with a sore chest and difficulty sleeping at night from pain.  The day after he came home he had another thorocentesis (#4) and almost 2 liters were removed from around his left lung.  He immediately became nauseated, had severe pain and was dizzy and lightheaded.  We spent the day in the radiology department where he received I.V. fluids, morphine and anti-emetics.  A rough, tough, homecoming.

The next day when he followed up with our Dr. Kossman he looked like crap and felt even worse.  The Percocet he took for pain at home was not holding him through the night and he was exhausted.  Dr. Kossman measured the lymph nodes in his neck and they were now 1.8 and 2 cm respectively and he had developed another one down below his clavicle measuring 2 cm as well.  There was also a new one in his axilla (underarm).  With these new nodes, the nodes we knew of on his last scan and another malignant effusion, Phil was clearly in relapse.   As Dr. Kossman said, “your disease is coming back forcefully and in a lot of places at once.”

So.  No bone marrow transplant.  They are not done on patients who are not in remission. On that note, neither brother is a match.  If Phil achieves remission again he will have what is called a MUD transplant (Matched Unrelated Donor transplant) with a donor from the National Registry.  This also means he will stop the nelarabine chemotherapy.  It is no longer working.  He will move on to the next option called alemtuzumab or Campath-1H.  It is a monoclonal antibody which targets CD-52 protein and knocks out T lymphocytes (all of them).  Unfortunately, by knocking out all T cells and not just cancerous ones it is very immunosuppressive and will put Phil at risk of opportunistic infections – like Mucor.  He will have to resume ambisone, his favorite!  

He will be having a CT/Pet scan to check the status and extent of disease again before restarting treatment.  That is scheduled for the middle of next week.  Until then he will basically be untreated and in an unopposed disease state.  That means more suffering and discomfort for him.  Our kids clearly know he is ill but we have yet to explain the full extent of what is going on.  Once again we call on you to hold us up in your prayers as we negotiate these numbing, stressful and bittersweet times as a family.   

The Results Are In

Our Wednesday morning came and went with little fanfare.  It was a very quiet day around the oncology office.  Sort of strange for midweek but peaceful and restful none the less.  Phil had his second dose of chemotherapy and spent the morning dozing with the other patients in the "chemo-lounge", chilling in a wanna-be Lazy Boy with a crocheted blanket draped over his legs for comfort.  The hours pass slowly so he usually reads or dinks around on my iPad, checking emails or looking at "bike porn" as I refer to his habit of looking at either motorcycles or bicycles on the web.  Wednesday he mostly sat around awaiting for the results of his thorocentesis cytology to come back.


When Dr. Steven Kossman shared the results with him it was in hushed tones.  There were lymphoma cells in the flow cytometry.  Not a lot maybe, but they were there.  This isn't the news we were hoping for but certainly what we knew was probable.  It was disheartening to say the least.  And confusing.  We still don't entirely understand why Phil continues to get these effusions or know if they are an impediment to his BMT future.  When I picked him up from his session, Phil was tired, slightly nauseated and bummed, but being Phil, he was trying to put his game face on.  As soon as he got home he was on the phone to his contact at UCSD, calling to get answers about what this means for his situation with the BMT.


What he learned for now is that BMTs are best when patients are in full remission but they are performed for patients who are not in remission.  We are still moving ahead with our process and have been asked to come in on Tuesday to meet with their social workers to discuss the whole process and learn more extensively about the demands on me, the care giver, the family, Phil himself, etc.  The results from his brother's David and Jamie's HLA match testing should come in at the end and middle of this and next week, respectively.  In the meantime, Dr. S. Kossman will confer with Dr. Ball on the next appropriate course of action regarding chemotherapy (if any changes need to be made) and Phil will follow up on Friday to continue with the last treatment.  


Our seemingly forever process moves forward and the roller coaster keeps rolling.  Stay on your knees.

Again with the effusion?

We're back in the office again, seeing Dr. Steven Kossman this time around since his old man Charles is on photo safari in Botswana. (I just gotta say I totally dig Chuck's choice of vacation spot, by the way.) Anyway, Phil is due to start another round of chemotherapy today but he's been feeling really crappy this week. His energy has been poor and he continues to have left sided chest discomfort and a weak cough.

A chest xray was done last week which showed a small infiltrate (a haziness) in his left lung but NOT an effusion so he was started on an antibiotic to treat a possible infection. So here we are and he still feels fairly rough around the edges though he's had no fever or sweats, no chills or other signs of worsening infection. According to Phil, this deal in his chest feels just like the other two effusions he's had prior to this, one on his right side and one on his left side. As of about a month ago, his PET/CT scans and bone marrow biopsy were really good so we are a bit confused as to what might be causing this again, if indeed it is another effusion.

His blood counts and lung field exams today were mostly normal. There was some dullness on the left but not enough to stop him from receiving his treatment. The plan was to get the chemotherapy this morning then go over to the hospital for an ultrasound of the lung and tap it if it is an effusion. Otherwise, it's full steam ahead. Keep on beating on this sucker with chemo until it's fully gone.

Phil's ultrasound showed he definitely had a large left-sided pleural effusion. The radiology techs drained off more than 1 liter of fluid and Phil is much more comfortable. The fluid will be sent off again for all the usual studies, including ruling out further lymphoma involvement/advancement. It is a "paranoid" time per Phil. To be on the brink of the BMT and to have this spring up again is very frustrating and disheartening. Especially because it was the tap of his left lung that came back positive for recurrence before. Phil said today that he realizes this is a bit like a "wrestling match" and that no sooner does he get one thing pinned down then he's got another situation popping up somewhere else. There is always a new opponent it seems.

He is scheduled to fly to Atlanta late next week to spend time with his best friends and his hopeful prayer is that he is well enough to do that. Of course, wisdom and discernment about the best choice for his ultimate health is our ultimate prayer request. With the BMT option on the horizon, each decision from here on out bears very thoughtful scrutiny.

Phil is very physically tired from the successive and cumulative toll of 3 (and now a 4th round) of chemotherapy. He is run down emotionally and psychologically after more than a year of chemo/surgery and complications and now, from confronting the daunting list of things that will be required of him for the BMT. Your faithfulness, your cards, wall posts, emails and prayers are keeping us all afloat as we walk through this most difficult of journeys. We continue to rely on you more than you will adequately know. You, the unseen team we look to for strength and determination when we feel depleted. I personally have felt revitalized this week and covet the prayers said in my stead. Thanks Team~

Be the Match Registry

Anyone interested in learning more about becoming a bone marrow donor can find everything in one place at Be the Match Marrow Registry at https://www.marrow.org

Thousands of patients with leukemia and other life-threatening diseases depend on the Be The Match Registry® to find a match to save their life.

Patients need donors who are a genetic match. Even with a registry of millions, many patients cannot find a match. For a successful transplant, a patient needs a matching donor. Special testing determines whether a patient and a bone marrow donor or umbilical cord blood are a good match. The closer the match, the better for the patient.

Race and ethnicity matter!
Because the markers used in matching are inherited, patients are more likely to match someone from their own race or ethnicity. Adding more donors and cord blood from diverse racial and ethnic backgrounds to the Be The Match Registry increases the likelihood that all patients will find the match they need.

Your heritage can make all the difference. If you are from one of the following communities, you are especially encouraged to join the Be The Match Registry or donate umbilical cord blood:

Black and African American
American Indian and Alaska Native
Asian, including South Asian 
Native Hawaiian and other Pacific Islander
Hispanic and Latino
Multiple race

Game Changer

The results are in and things couldn't look much better. Phil's bone marrow biopsy appeared normal morphologically (regarding the form and structure of the bones) and the flow cytometry studies (the microscopic function) were also normal. His marrow is back to an absolutely normal healthy state!


His PET/CT scan showed a residual 1.3 x 2 cm chest nodule which is barely hyper-metabolic (active), some mild residual scar tissue around the heart with no metabolic activity, scarring in the thoracic vertebra and pelvis with no metabolic activity and no remaining pleural effusions. This is an excellent report! So excellent in fact, that Dr. Kossman referred Phil to Dr. Edward Ball, Bone Marrow Transplant Specialist at UCSD's Moores Cancer Center for a consultation. We saw him and his staff yesterday for an educational and inspiring overview of bone marrow transplantation (BMT) and left with a binder full of information and directions about what our next steps are.


Phil is heading into the very down days of post chemo exhaustion so BMT is not on his front burner at the moment. However, knowing that it is now within the realm of possibility after so many setbacks and complications and so much suffering, I can say on his behalf that we feel a measure of relief and the beginnings of real optimism for a cure. These are VERY difficult words for either of us to say, needless to point out, ideas to think about or entertain. I would appreciate your continued prayers as we negotiate the next steps in this journey.


More details about BMT will be coming in future posts but here are the high points from yesterday's consultation:


1) Phil is definitely a candidate for BMT.


2) Due to continued concern for possible mucor infection, he will remain on his oral antifungal agent throughout the entire process of BMT.


3) The first step involves insurance (of course) and getting all the ducks in a row in order to do the HLA (human leukocyte antigen) testing of his brother's to see if they are a good match. They represent the best chance for an optimal match. From there we will go to the National Bone Marrow Registry.


4) In the meantime, Phil will continue his chemotherapy and is scheduled to begin his next round on September 12th. We have a follow up visit with Dr. Ball in about three weeks and will be doing a lot of reading in the meantime. It feels good if not daunting to be changing gears again.