Day 10 post-Cells: A Visit from The Guy

On my 21st day in the hospital, I had a surprise visitor.

It was a Saturday. Morning rounds happened a couple of hours later on weekends than they did during the week. I expected to see the on-call fellow ("my" fellow was off that weekend), and the attending physician. At around 11:00 AM, the knock. "White coats", I could tell that much immediately. There were two of them, but instead of the attending doc, who I was expecting, it was the principle investigator of the trial. The Guy.

What?

The Guy and the on-call immunotherapy fellow strolled in and stopped at the foot of my bed.

The Guy was often among the big crowd of doctors I would see on Mondays during "grand rounds"; due to the rash, and the Rh drama, I'd seen the flock many more times than maybe what is typical.  TG usually was just one of the pack, and the attending doc would do all of the talking.  TG wrote the book, literally, on immunotherapy.  He's been working on this for decades. 

So, there he was, The Guy, standing at the foot of my bed on a quiet Saturday morning, grinning.

Me:  Wow, you look happy.  Good Morning.

TG:  Good Morning Mrs. Ryan.  I wanted to tell you again how excited we are about your cells.

Me:  Yeah...me too. <still not grasping what these people are talking about>  So.  Someone told me that I'm the first to have cells that reacted against KRAS ("crass")?

TG:  K-RAS ("KAY-rass"), he corrected.  You are not the first to react, but you are the first who had many cells returned to you that reacted against K-RAS.

Me:  <pondering that comment...> Tell me about K-RAS...if you have time.

TG:  It is a gene mutation.  It is a mutation from your normal DNA.  We know that it is involved in colon cancer and many other cancers.

Me:  So what have you learned about my case in particular?  Anything, yet?

TG:  No, no.  It's far too early for that.  Far too early.  We don't expect to see results for months.

Me:  Ah.  People keep saying that.

TG:  You should visualize those wonderful TILs attacking all of the tumors.

Me:  Oh, I do!  I have been doing that for a long time.

TG:  Good!  Good.  Mrs. Ryan, you are a pioneer. <pats the foot of the bed, then heads for the door>

Me [in my head]:  ...ima what?!  What did he say?...pioneer?!

Me:  HURRAY for pioneers!  The only problem with being a pioneer is all of these arrows in my back.

TG:  <stops, turns toward me> Mrs. Ryan, we are going to pull those arrows out of you, one by one.

Me:  That would be awesome.

Then he and the fellow left, and I had a moment of wondering whether or not I had just hallucinated the entire story. Hmmm...nope. Don't think so! Holy beans. 

The Pioneer himself called me a "pioneer". What in the world?...

Day 9 post-Cells and Mephistopheles

Day 9 was a Friday.  What happened Friday is a blur, but I do remember vividly the early morning routine.  I was not needing I.V. meds much anymore, but did still need a 15-min. infusion of an antibiotic on Friday evening.  My night nurse, C., chatted w/me about her family, and we commiserated about what it is like to have children who are learning to drive (For The Record:  Terrifying on Every Level).

When 5:00 AM rolled around, C. came back to draw labs, and the twenty-billion other things that were now so routine that I gave none of them any thought (lift your arm for the blood pressure cuff, hold out the opposite hand for the O2 gizmo...next the stethoscope...blood draws via the H.catheter...).  When it came time to provide a daily urine sample (one of the mortifications of life in the hospital), I dutifully donned my slippers, grabbed the ever-present I.V. pole, and shuffled my way to the bathroom, which was about ten steps from my bed.

It was only as I stood at the sink washing up that I realized:  I wasn't connected to the I.V. pole!  Sometime during the night, C. must've disconnected me without my knowledge.  I was so used to dragging that pole around with me, it was now my habit.

I laughed like a lunatic as I threw open the bathroom door, and shoved the pole out ahead of me, letting it roll into the room on its own.


Me:  < laughing > Do you know what I just did?!?

Nurse C:  Oh my gosh!  < doubled over, laughing >  I thought I forgot to disconnect you!

Me:  That is really pathetic.

Nurse C:  < howling >  Oh,  I can't stand it!  Don't worry, I won't tell anyone.  <nabs first nurse to walk past in the hallway, then tells her the whole story.>

Me:  That's right, kick a patient when she's down.  I see how it is...it's O.K.  I can take it...

I was happy for the laughter, because the neupogen shots I'd been getting each night (to wake up my bone marrow) had started to hurt quite a lot.  Laughter made me forget the pain for a while.

I texted one of my friends a shortened version of the story.

Me:  Just brought the I.V. pole to the restroom, even though I wasn't connected.

Friend:  Maybe you should give that thing a name, if it's going to be hanging around so much.

Me:  Yeah...something onerous.  Like...Mephistopheles.  Ha!  That's it.

So, from that day forward, my I.V. pole was known as Mephistopheles, or "Meph" for short.

I had been listening to "Beethoven's Last Night," a rock-opera by Trans-Siberian Orchestra (TSO).  Here's a written version of the story.  Mephistopheles is the devil, who tries to trick Beethoven into surrendering all of his music.

On Friday, my ANC reached 330, up from 90 the previous day, and 10 the day prior to that.  Things were moving in the right direction.

The Worst Day Ever, Part 2

As happened many, many times during my stay at NIH, a friend would text at just the moment when I needed him or her the most.  When the flock of doctors had left the room after delivering the news about the Rh-positive platelets, I received a text from a friend:  "How are you doing today?"  I replied something like, "Not good.  Please pray." but gave no details.  There was too much to explain.

Someone knocked on the door, calling, "Nutrition!", and entered with a lunch tray.  I was in no mood for lunch.  Just then, a visitor entered the room.  I recognized her as the (Roman Catholic) Eucharistic Minister.  She was filling in for the Wandering Priest, she said, because he wouldn't be at the hospital that day.

When the woman looked at me, it was not with pity, or concern, but profound compassion.  She apologized for interrupting my lunch, and asked if she could sit down.

She sat across from me, in a chair facing mine next to the window.  The tray-table separated us.  I did not touch the food, but instead spent the next hour or so telling her the story--at her request--of how I came to be at the NIH.  I started with stories of my kids, and about the sorts of things we did as a family--our walks to Mass, and how the boys loved rainy days the most because on those days we all got to carry umbrellas.  I showed her a picture on my phone of my three little boys and their umbrellas, the middle boy's head completely hidden by his blue umbrella. I shared how my diagnosis came about, and what I experienced the night before my initial surgery:

When meditating on what a diagnosis of cancer might mean, I had the overwhelming sense that I would be protected from fear, no matter where the path ahead took me.

I went on to explain that I saw myself talking to Mary, the Mother of Jesus. In a way that I can't explain, I became acutely aware that I would suffer. I felt like I was being told (but I did not hear an audible voice) that what I would endure was absolutely necessary, and it could not be avoided. In some way, I knew that no one could stand in my place--for some reason, it had to be me. I was the one who had to undergo whatever was to come. I was not promised healing, but I mentally accepted whatever lay ahead. I had the overwhelming sense that good was going to come from my disease. I did not know if the "good" would lead to a cure for me, but I trusted that some plan was underway and that my job was to cooperate. I was at peace with it. All worry drained away.

The Eucharistic Minister sat and listened intently.  I asked her if she knew who St. Louis de Montfort was.  She did.  I explained that after the birth of my fifth child, in 2009, I had followed St. Louis' formula for Total Consecration.  She was familiar with the devotion.  I explained how I had had to reconcile myself to the fact that God's plan might include someone else raising my children instead of me. I told her that the only way I was able to accept this idea was because I believe with everything that I am, that God loves my children even more than I do. I knew that cancer might take my life. Thinking of my kids missing me was almost too much to bear. I had to surrender to God's Will. I had to trust like never before. Whatever the outcome, God could and would use it for His glory. He would not abandon my children..."my children" have in truth been His all along. In fact, even with all of the turmoil, set-backs, and pain that led to me getting to NIH (posts re: failed needle biopsy, here and here which is my new standard for how much something can possibly hurt),  I could honestly say, I was protected from fear. Fear gets in the way of faith. I learned this lesson well. I knew, too, that my time at NIH might not lead to a cure for me, but I firmly believed (and do believe) that participating in the TIL clinical trial was what I was meant to do.

We were both in quiet tears.

Talking with this visitor was just what I needed, but now it was my turn to listen.  She shared with me the story of her husband's cancer diagnosis.  He had had a glioblastoma, cancer in the brain.  She told me of his willingness to undergo a clinical trial some fifteen years prior, at the very hospital where we both now sat.  The group of patients that underwent that trial, she said, were among the first to receive IL-2.  Her husband's side-effects from the substance--the same one I wrote about here and here, and which caused me no side-effects--had cost her husband his life.  His brain had swelled uncontrollably from the treatment, and he died.

I don't know how long we talked. When we finished, we assured each other of our prayers, and gave each other permission to re-tell our stories. She shared the Eucharist with me, and we prayed together.

I felt some relief then, but was still restless and annoyed about the Rh-positive platelets.  I was to receive another transfusion of platelets that day, and though better, my mood was still one of agitation and loneliness.


My fellow strode in then, as he always did, to check on me before the rest of the doctors came door-to-door on their afternoon rounds.  He knew that it was a Very Bad Day for me, and he attempted to lift my spirits in what I considered at the time a most uninspired way.

him:  I'm gonna see if Recreational Therapy can come up here to you.

me:  You're sentencing me to weave pot-holders?!  < scoff >

fellow:  I am going to speak to the infusion specialist about what happened.  I will let you know what he says.

He left then, and returned later on rounds with the attending physician and several others.  The attending physician asked where my husband was, and "Couldn't we get a visit from your kids arranged?"

I explained that my husband's current view of the children was that they are, "walking petri dishes of germs," and that he had forbidden any visitors, including himself, while I was neutropenic.

The doctors filtered out as they always did. The infectious disease specialist hung back a bit, offering a comment, sort of over his shoulder as he walked out, "I can't disagree with your husband."

I was left alone again, to stare out my window-without-a-view. Depression began to settle like an angry fog.


Sometime that afternoon, the fellow returned, swooping in triumphantly with a six-page document, freshly printed and stapled. "Here," he encouraged, "read this. We'll talk about it later. I have my own copy." He explained that he had mentioned to the infusion specialist that he "had this patient who wants to know everything..." The specialist then found an article that had been published in the British Journal of Haematology titled, "Low frequency of anti-D alloimmunization following D+ platelet transfusion:  the Anti-D Alloimmunization after D-incompatible Platelet Transfusions (ADAPT) study." He made the fellow a copy, and one for me, too. "She may find this of interest..."

Well then. This was a far cry from weaving pot-holders! I was immediately shaken from my loneliness and gloom. I had been given a project to tackle! Who knew if I would be able to understand a word of it; the fact that these two gentlemen had taken the time to find that study to ease my mind was almost incredible to me. Any doubts that I may have had about the care I was receiving had vanished in that moment.

My doctor returned at the end of his work-day and went over the study step-by-step with me. Though I was at diminished capacity, due to lack of sleep, I was able to keep up, contribute, and agree that the odds of me becoming sensitized from the transfusions I received were very slight indeed, if the medical journal article was accurate.

The Worst Day Ever was over. When I awoke the next morning, the dark cloud was gone. Confidence in my medical team, and in the institution of NIH itself was restored by that one act of perception and kindness on the part of my immunotherapy fellow. I will never forget it.

The Worst Day Ever, Part 1

On Day 7, despite a transfusion of platelets on both Day 3 and Day 6, my counts were still not recovering.  I developed an itchy, bright red rash that covered way more of my body than I care to remember.  Some docs thought it might be petechiae-gone-crazy, others thought perhaps "heat rash".  All seemed content to blame the platelet infusions.  I was given a cooling sort of lotion, which relieved the itch somewhat.  Later, they prescribed nystatin powder.  This seemed to help even more than the lotion had.  (Petechiae looks like pin-prick-sized red dots all over the skin, but what I had was a solid, deep coloring that appeared in wide swaths over various parts of my body.)

More fun, I developed an incredibly dark, purple-y bruise on my right upper arm.  This hid just below the sleeve of my gown, and happened to be located on the arm most-chosen for blood-pressure measurements and neupogen shots.  Nurses routinely gasped when they lifted the sleeve of the gown and found themselves staring at such a battered hunk of flesh.

Nurse duJour:  Where'd that come from?

Me:  Do you know < insert name of favorite nurse >?

N dJ:  Yes...why?

Me:  She hit me!

hahaha...

I still don't know how I got that bruise (and it remains on my arm to this day, though it is fading).  Of course, no NIH nurse would ever punch a patient!  They all went "above and beyond" in their care for me.  As did the doctors.  Despite what I'm about to tell you next.

Up until Day 8 post-cells, I would wake from my two or maybe three hours of nightly sleep with either a song in my head, or what seemed like someone happily shouting (why shouting, I don't know) a prayer from the rosary (most often this one: "Hail Holy Queen...").  On Day 8 though, I woke to utter silence.  Something seemed "off".  I felt incredibly lonely.  It was Day 8 post-cells, but Day 19 in the hospital with no sign of when my bone-marrow might bounce back.  Though the previous day's ANC (absolute neutrophil count) came in at a (not!) whopping "10", I was told not to get my hopes up; it could mean nothing.

It was 6:00 AM.  I slogged out of bed, over to the chair that waited by the window.  I faced toward the only sliver of sky that I could see from my room, up above the glass walkways that connected the upper floors of two wings of the building.  As I prayed a rosary, I noticed my fellow walking through the glass-encased walkway towards the 3NW wing.  I knew that in a matter of minutes he would stride into the room without knocking, as he did every morning.  I would have plenty of time to finish the rosary before he arrived.  I offered prayers for him, and for the rest of the staff, too.

He came in without greeting me, and sat on the edge of the bed.  He leaned forward slightly, his hands folded in front of him, his expression serious.  He looked past me, out the window.

him:  I have something to tell you

me:  m'kay

him:  We have been giving you Rh-positive platelets.

me, horrified:  WHAT?!?  What are you trying to do kill me?

him:  < silence ...then > ...we're discussing it.  We are going to talk about it at rounds.  I think it may only impact you if you are intending to have more children.  We will talk about it at rounds.  I will be back soon.

me, calmer:  OK.  < long pause > I woke up so homesick. <fighting tears>  Do you have anything that can take homesickness away?  (Of course, I knew that he didn't.)

him:  < long pause > I wish I did.  I will be back for rounds soon.

He left.  Silent tears streamed down my face.  I stared out the window, at the tiny sliver of sky that wasn't blocked by the brick walls of the building.  I prayed that I would regain my composure as I faced what the flock of doctors would tell me.

My Rh-negative status was linked to some powerful, tragic memories which came flooding into my mind as I waited for the doctors' return.

What did it mean to be Rh-negative, and receive Rh-positive platelets?  How could platelets be Rh-positive?  I had no idea.  Could it be the cause of the horrible rash?... A more horrifying thought: Would it impact my immune system? Would it affect the TIL treatment?

I was ignorant, and so terribly tired.

A few minutes later a flock of white-coated doctors entered my room.  The attending physician took the floor, explaining what the fellow had just covered.  He then referred to his peer, who he said, was more experienced with this question.  That doctor encouraged me to get a rhoGAM shot.

I had questions.  How would rhoGAM affect me, given the fact that I had no immune system to speak of?  What were the ramifications if I did not get the rhoGAM?  Was it too late already?--the first platelet infusion was five days earlier.  With all of the pharmaceuticals coursing through my system already, would it be wise to add one more?...  How dangerous is this situation, and did you know this happened before today?  Why wasn't I informed ahead of time that this was a possibility...

What I could not verbalize at the time, my chief concern, was this: What other mistakes might happen?

I found it impossible to form the words to express all of the ideas swirling in my mind.  I began to doubt everything the doctors said.  Prior to this, I had been more than content, I had been eager to trust these brilliant minds.  Yet at that moment, I wanted to banish all of them from the room.  I wanted to throw things at the door behind them as they left.  I was angry about...what?  I was sick of feeling sick.  I felt out-numbered, ignorant, and utterly helpless. I was alone in a room crowded with strangers, all staring at me. Nobody knew what to say, least of all me.

Someone commented that my platelets were so low, that it would've been more dangerous to not give platelets.  "You needed platelets," he stated as a matter-of-fact.  Maybe I did need the platelets, but did you know you were giving me Rh-negative platelets?  Is something wrong with the process?!  Shouldn't I have been informed before it happened?  It was too much.  I had no strength to argue, or to even, I think, articulate my concerns effectively.  I was too weak, and too sleep-deprived.  I submitted to the rhoGAM shot.  The shot itself was no big deal--my issue was with the lack of information about the platelets.  I'm not sure I got my point across. The doctors filtered out of my room--all except one.

The pharmacy specialist held back.  He explained that NIH has a world-class blood bank, and even they run low on Rh-negative platelets.  He went on to inform me that Rh-positive platelets are often given to Rh-negative patients, to no ill-effect.  "Red cells are found in platelets, but in such low numbers that they most-often do no harm."  I mentioned that I had already had two infusions, and they spoke of a third one...  "Not to worry," he assured me. 

I wanted to believe him.  I needed more advice.  He told me his name, and said he'd be happy to discuss any concerns or questions "any time".  He was friendly, and confident.  He seemed to believe what he was telling me, but I was not so sure.

As soon as he left, I texted my friend-doctor back at home.  His comments confirmed what the pharmacy tech had said.  It wasn't enough.  I next contacted an online friend who trains nurses about all things Blood.  She, like my other friend, assured me that I need not be overly concerned.

I was still terribly homesick.  A friend texted, "How are you?" and I texted back something like, "Very rough day, please pray."  A few minutes later, something happened that would change everything.

Understanding the TIL Clinical Trial in 19 Easy Steps

See the "Key Posts" link on the side bar to navigate to posts about particular steps as I experienced them. This trial is not just for colon cancer patients--they are recruiting patients with other G.I. cancers, as well as patients with other solid cancers. See the trial link below.

Trial ID: NCT01174121 One patient's perspective:
Step 0 (hello, fellow IT people!):  Click the link above, if you're considering this trial.  Read the eligibility criteria carefully. One requirement is that either oxaliplatin or irinotecan has failed to cure you. Note well that word "or." You do not need to try every chemo out there, if you don't want to. When FOLFOX failed me, I applied for this trial. I did not receive irinotecan. (This refers to metastatic colorectal cancer. Other cancer types have different criteria.)
My first contact with NIH was on December 19, 2014. I picked up the phone and dialed (866) 820-4505. I spoke to a friendly, helpful research nurse who got the ball rolling almost immediately.

1:  Tumor harvest.  For the purpose of this trial, at least one tumor must be in an "easily resectable location", and it must be "of sufficient size". The tumor is in a sense a "TIL Factory." The researchers set a size guideline to help ensure they'll have enough material to work with.
My tumor harvest surgery happened on April 1, 2015.

2:  Extract tumor-infiltrating lymphocytes from the tumor.  Note: TIL are the body's natural defense against tumors.  It is because of this step that the protocol requires that a patient commit to a one-month "wash-out" period from chemo before surgery.  If you are unable/unwilling to be chemo-free for one month prior to the tumor-harvesting procedure, this trial is not for you.  The researchers need to harvest a "living" tumor.  They hope to find active TIL in the patient's tumor. Requiring a chemo wash-out prior to harvest surgery gives them a reasonable hope of success at this.
I hadn't had chemo since March 3, 2014, so this was not an issue for me.

3:  Expand the TIL in the lab, using an agent called IL-2. (It is also known as Aldesleukin, or Interleukin-2.) This will be used in development of the final cell product. It will also be given via I.V. after the cell infusion, to promote the optimal environment for the TIL.

4:  Mapping of tumor DNA. (Note the dual purpose for harvesting a tumor:  to collect TIL, and to map the tumor's DNA.) NIH will perform whole exome sequencing on the patient's DNA. This is a far more extensive analysis than you might already have received from companies such as Foundation One.

5:  Mapping of healthy DNA.

6:  Identify the mutations. Mutations are identified by comparing the patient's normal DNA to their tumor DNA.

7:  Choose which mutated genes are significant. Some mutations are innocuous, while others may be oncogenes.

8:  Find out which mutation the patient's TIL most-strongly recognizes. NIH does this by first building a genetic model of the patient's tumor. The model is constructed from pieces of abnormal DNA--the mutations from the previous step. This construct is called a tandem mini-gene. Next, the patient's own dendritic cells (a type of white blood cell) are used to test the TIL for reactivity (see this post for more information on how a T-cell works). Apheresis is the process by which dendritic cells are obtained. My post on my first apheresis is here. I am not a fan of apheresis, but I am a big chicken. I'm sure you'll do fine.
In my case, 61 mutations were incorporated into tandem mini-genes. One of those mutations was the G12D mutation of KRAS.

9:  Identify and expand the active TIL. If some TIL show reactivity against the tumor mutation(s), then those TIL are expanded (multiplied) to large numbers. This becomes the patient's treatment product. It is a highly concentrated collection of immune cells that are targeted to one of a patient's particular tumor mutations.
My cell treatment consisted of 148 billion cells, of which 70% were targeted to mutation G12D of KRAS.

10:  Patient receives "conditioning" chemo.  Chemo (cyclophosphamide, aka cytoxan, and fludarabine) is infused for seven days. (The duration of chemo has been shortened to five days, per J.D.'s experience in Sept. 2018.) This shuts down the patient's immune system.  The patient is monitored around the clock for side-effects, signs of infection, and receives hydration via continuous I.V infusion. Many difficult things are associated with this stage of the protocol. The breakdown is: two days receiving cytoxan, followed by five days of fludarabine.  This part is difficult.  I may be under-reporting.  If you've read the blog, you have an idea of what this stage was like for me.  In a word:  awful, and I've been told that my side effects were minimal. Keep in mind that everyone responds in their own unique way to chemotherapy, and every patient has their coping mechanisms.  No-one is allowed into this trial unless at least one full regiment of chemotherapy has failed them, so if you're considering this trial, you already have an idea of what you'll be facing with the chemo here.  Bonus: these drugs do not cause neuropathy, however, you will lose your hair.

11:  Cell Treatment. Patient is infused with the TIL. Surgery to harvest my tumor happened on April 1, 2015.  My return to NIH was Father's Day, 6/21/2015, which was ten days prior to "cell day". I received my cancer-killing TIL treatment on July 1, 2015.

12:  IL-2 Infusion. The same agent that was used in the lab to support the proliferation and health of the TIL is now infused into the patient. IL-2 in the doses used by this trial can be a dangerous thing. Normally it comes with a wide range of side effects that could include:  spasms, swelling, fever, chills, and hallucinations. Maybe other stuff. Ask your doctor. This part of the protocol is the one place in the various steps where the number of doses the patient should receive is unknown. The patient is left to decide, for the most part, based on how well (or poorly) they are tolerating the side-effects of IL-2. I had no side-effects from IL-2. One doctor said he had "never seen anything like it," but who knows. I recommend prayer! Lots of it.

13:  More IL-2. IL-2 infusions happen every 8 hours, until the patient or one of the doctors says "stop".  I received 5 doses of IL-2. I was told that this is "about average".

14:  Waiting. The patient is given support meds while neutropenic (neutropenic = bone marrow not producing any white blood cells), hydration as needed, meds for nausea, and any other side-effects of either the chemo and/or the IL-2.  All that is left is to wait for the patient's bone marrow to "wake up" again after the harsh effects of the seven days of chemo. The time it takes for this to happens varies by individual. I was very weak, tired, and nauseated. There were days when even eating seemed like "too much work". I don't mean 'preparing food to eat', I mean the act of eating food that was delivered right to my bedside table. I have a distinct memory of bringing a ravioli-laden fork to my lips exactly one time before deciding that I was too tired for such strenuous activity. Due to the low platelet counts, and neutropenia, the patient is forbidden from any activity that would cause infection or blood loss. This includes tweezing, shaving, and flossing. Getting a tattoo at this point is right out.

15:  Release from hospital. When the patient's platelets reach 50, and absolute neutrophil count (ANC) is at 1,000 for 3 days, or 5,000 for one day, the patient is released from the hospital.  These metrics are the signal that the patient's immune system  is restored enough to allow him to return to society.  Until the bone marrow is fully restored, the patient will take an anti-viral medicine daily, and an antibiotic at 3x/week for many weeks.  I was released on Bastille Day, July 14.  My hospital stay was 24 days. They expect patients on this trial to spend 3 to 4 weeks in the hospital.

16:  First follow-up. This is scheduled for 6 weeks post "cell day." You'll go to the phlebotomy department where many vials of blood will be taken. Later, you'll get scanned (CT and/or MRI). The following day, you will meet with your immunotherapy fellow and an attending physician in the outpatient clinic (aka "OP3") to discuss their findings.

17:  Second follow-up. You will return to NIH a second time--this visit is the teller--around 12-weeks post-cells for scans and labs.

18:  More and more follow-ups. Scans continue periodically, if tumors are not growing, to determine whether tumors are stable or shrinking. If growth is shown two months in a row, the patient is released from the trial to pursue some other course of treatment.  If no tumor growth is shown on the scans, you may be called back for many more follow-ups (let us hope for this!)


If you are considering participating in this trial, understand that it will involve a lot of waiting. It takes several weeks to sequence the DNA, compare it, and to build the tandem mini-genes. You'll be assigned a "fellow" (immunotherapy fellow) who will hopefully be able to answer your questions and keep you informed about how your cells are doing while you wait.

If you do get accepted into the trial, and make it through to "cell day", may I suggest the following for your consideration:

Give up coffee, if possible.  I am a "social drinker" of coffee, so this was not an issue for me, however, I have heard from another trial participant that dealing with caffeine withdrawal was not a pleasant experience.

Say Good-bye to Sleeping at least for the cyclophosphamide phase. During the two days of this infusion, you are guaranteed to sleep very little. Your bladder will be treated to some protective agent whose name escapes me...  At any rate, they'll be keeping you ultra-hydrated in an effort to protect your bladder, and so you'll be awakened every two hours for a full 48-hours once the Cytoxan infusion begins. Additionally, after the chemo phase is over, nurses will continue checking on you day and night for weeks, sometimes waking you to take vital signs. The beeping and whirring infusion pumps can also be a sleep-stealer until you adapt to the noise. Consider bringing earplugs if noises bother you.

Load up your devices.  If you are traveling to NIH from far away like I was, you may spend a lot of time alone in your room. Entertainment could save your sanity. Bring all of the cords for any electronics you plan to use. Plan to keep in touch with family and friends via germ-free video chats instead of in-person visits.

Prepare to become bald:  bring a hat, scarf, wig, or other head covering if you aren't comfortable being seen without hair. Also: newly bald heads are chilly, I've found. One thing I wish I had brought with me was an electric shaver. The clippers left a lot of stubble, and it was painful to sleep on that stubbly scalp for the first couple of nights.

Expect to be taking a lot of pills.  If pill-swallowing is a difficult experience for you, you might want to get some practice with it before your hospital stay.  While you're neutropenic, you'll be receiving multiple oral meds every day.  Nothing says, "Good Morning!" like a handful of pills.

Most Important:
Remember that you're in a fight for your life.  It won't be easy, but it is worth fighting for, and you've got some incredibly dedicated, caring, and skilled professionals right by your side every step of the way.

Day 6 and Becoming Bald

My platelets were bouncing around in the 7 to 10 range, and so a second infusion of platelets was ordered for this day.

Though I was weak and tired, I knew a shower would make me feel a little better.  When I toweled off my hair, I was in for a big surprise.  So much hair was loose that it got tangled into the hair that was still connected.  It was like I had little mats of hair all over my head.  Not attractive!  I tried combing out some of the mats, but fistfuls of hair came out instead.  It was bad.  My hair is dark-ish, and the contrast between the dark hair and my pale, shiny scalp was...striking.  I was told to expect this, but it was still rather jarring to know that this was the day I'd go bald.

When I exited the bathroom, my eyes fell on a new item in the room.  It was a package--a large one--from a long-time friend.  What a wonderful distraction this was!  I opened the box and took note of only the items readily visible.  I decided that I wanted to save the excitement for after I went bald.  It would give me something else to think about, and to eagerly anticipate.

The logistics of getting my head shaved turned out to be an all-day affair.  I was given conflicting information about whether there were electric clippers on the ward, and about whether a nurse could or should do the shaving.  Each new person I asked about it seemed to have a different answer.  What they all were hoping for, was that the NIH barber would be able to visit me in my room to get rid of my hair.  Before that could happen though, I would need a visit from a social worker (why?...still don't know) and a voucher, which would cover the cost.  My nurse set the wheels in motion.

At 3:45 PM or so, the social worker appeared.  He introduced himself and apologized for not being able to arrive any earlier.  He was covering someone else's shift.  He carefully broached the topic of the voucher.  "These are only given to patients in financial need.  Are you able to cover $20 to $30 for the service?"  "Whatever.  Just get him up here.  I don't want to wake up next to a pile of hair, and I'm too nauseous to pull it all out myself."  I may have used gentler words.  He then told me that, unfortunately, I would need to make an appointment with the salon for the next day, as they would be closing any minute.  (I was not allowed to go to the salon myself due to neutropenia.)  Aside from certain members of the medical staff, the hospital pretty much shuts down promptly at 5:00 PM.

When afternoon rounds happened, I asked the attending if it would be possible for me to get my head shaved.  "I can do it myself, if you let me." 

Me:  I have three little boys at home.  I've used electric clippers dozens of times.
Fellow:  Do they still have their ears?
Me:  I'm sure they'll grow back.  Eventually.

The risk of nicking my scalp was one that the nurses were hesitant to assume.  The attending gave his OK.  I asked that it happen "before bed", and he said that he would take care of it.

Soon after, my nurse showed up with electric clippers.  She disinfected them, then asked me warily if I knew how to use them (because she did not).  I explained that I have used this type of thing many, many times on my husband and boys.  She was hesitant.  "Be careful," she cautioned.  She brought in a sheet and asked that I stand on it while shaving my head.  She mentioned more than once that she did not want me to clean up; she would do it.

Deep breath.

I was very eager to get this finished.  My hair was in such a state that it was a tremendous relief to be rid of it.  I wasn't sad about it at all; to my mind, I was fixing a problem.  I ran into some difficulty due to my near-sightedness.  I couldn't not wear my glasses...also, my arms were weak.  It was a challenge to do the back adequately.  I tried.  Thankfully, the nurse came in then and witnessed how easy it is to use clippers.  She asked if she could help, and I gladly turned over the device to her.  I departed the bathroom with short, stubbly hair, and no nicks or scrapes.  Success!

I found out quickly how chilly a bald head can be.  Sleeping on the stubble was uncomfortable.  It felt exactly like I was sleeping on a hairbrush.  I used a super-soft blanket that was in the "box of awesome" that my friend had sent.  It helped.  Bits of stubble fell out everywhere, my scalp itched like crazy, but I was content.  Self-conscious?  Yes.  I figured these caregivers in particular were no stranger to the bald-headed woman.  It would be fine.  I went a day or two w/o any head-covering, but since then have always had a scarf or "chemo beanie" on, even during the night (warmth!).  Being bald is not nearly as difficult as I thought it would be!

I began plotting ways that I could fake a biker-tattoo on my neck.  Of all the services they have here at NIH, tattoo parlor is not one of them.  Ah, well.  It would've been a terrific joke to play on my husband, who would not be back to the hospital until I was released.

Days 4 and 5

On Day four of the trial, at 2 AM, I spiked a fever.  Neutropenia and fevers are not a good combination.

I had visited with the out-going immunotherapy fellow (fellow) sort of casually just a few hours prior, a sort of "see you later"--our version of a farewell--but had not yet officially met "the new guy".  At 2 AM on Sunday morning, I did. What a way to break in a new fellow...

My room was dark, and I was uncomfortable.  My head was throbbing.  I tried to ignore it, thinking that a headache under the conditions I endured was probably no big deal, and maybe even to be expected. I was so, so tired, and it seemed easier to just lay there, hoping for sleep rather than to bother about asking for meds. The night nurse came in to do...something.  I recall muffled voices, but couldn't make out what was being said.  I was in a haze, and wanted only to sleep.

The next thing I remember is light streaming in from the doorway. A tall somebody in a white lab coat crouched by the side of the bed, resting both arms on the bed rail. He introduced himself and explained what a fever could mean in a case like mine.  I wasn't aware that I had a fever, but my head was killing me.  "Only a small percentage of patients on the protocol develop an infection," he said, "but any sign of one means that we'll treat you as though you do."  An I.V. antibiotic was started immediately.  I remember feeling sorry that "the new guy" had to start off his rotation on the service with such an early call.

Extra labs were taken then for the next many days. Initially, they drew cultures from two different spots: one directly from a vein, and the other from the Hickman catheter. These two samples would be analyzed day after day to determine what, if anything, would "grow out". They used samples from two different locations each time in order to set up two different cultures. This allows the researchers to be able to rule out the possibility of contamination confounding the results.

They gave me Tylenol for my headache, and that helped tremendously. I slept fitfully. In the daytime morning that same Sunday, I was given a transfusion of hemoglobin (red cells only--we didn't want to interfere with the TILs in any way).

During morning rounds, the attending physician went over the same information that the fellow had the night before (actually, it was only about five hours before).  I was receiving I.V. hydration at this point, and for the next five or six days thereafter.  Each morning, I had to take a lot of pills. On one of the nurse's advice, I developed the habit of eating an apple or an orange just prior to the early-morning nurses' visit so that my stomach would better-handle the anti-inflammatory, indocin. Peeling an orange released a burst of freshness that seemed to jolt my senses to life each morning.

During afternoon rounds, I was informed that--so far--nothing had grown from the cultures.  The attending physician said that at least we now knew that if it was an infection, it was not a scary, fast-growing one. [Later I learned that one culture--only--grew Staphylococcus saccharolyticus, but it was thought to be a contaminant, since it only grew from one culture, and it is not known to cause fevers.]

Day 5 was Monday.  I received daily visits from a minister who I affectionately nicknamed, "The Wandering Priest".  He offered me the Eucharist daily, but I wasn't always able to participate.  Nausea was bad, despite I.V. meds to control it.  I shudder to think what it would've been like w/o the meds.  More often than not, he'd point to the triangular, orange, medical trapeze suspended from the ceiling above my bed by a chain and remind me to, "Hang in there."  I admit I grew tired of this phrase!

I was tired. So tired. The fellow visited four times each day, twice alone, and twice on rounds with one or more other doctors. Sleep was not happening. If by some miracle I was able to rest, it was not long before it was time for vitals, medications, bandage change (for the Hickman), or some other necessary disturbance. Every day, news about my labs would be the same:  neutropenic. My bone-marrow was still on its chemo-induced vacation.

Showers had been a bright spot in the day, but now my hair started falling out a bit more noticeably. ...not in clumps, but in groups of say, ten strands at a time. The shower drain would collect more and more hair. I always scooped it up and threw it away. I didn't want to see it, or to gross out anyone who might peek into the shower.

I met a fabulous nurse about this time (truly, they all are very skilled and compassionate).  We had many good conversations, many about parenting.  She has a wonderful sense of humor, and I was always happy to see her. She would be my day nurse for the next three days.

When she found out that I was using dental floss while neutropenic (she spied it in my bathroom), she hit the roof. "You cannot do that! You have to stop." My fellow happened to be in the room as the nurse was scolding me. He looked at her, then at me.

Doc:  You're still doing that?

Me:  Only, like, every day. Once. Just one time, each day.

Doc:  No.  No, no, no.

They did not physically remove the floss from my bathroom, but they made it clear that under no circumstance was I to be using floss until my neutrophils returned. Giving up flossing was harder than I expected. "You know, periodontal disease is a serious thing..." was my lame defense.


They weren't buying it.

Next came a graphic description (thanks to the fellow) of germs acting like cock roaches in the blood stream and something about flossing exposing the cock roaches. I don't remember. I only remember: GAHHH!  My imagination is too good, sometimes, and the idea of cock roaches made my stomach churn.  "Enough!  I'll stop flossing!" And I did. Ugh.

Next up:  Sleen loses her hair.