And so our young hero journeys to Bethesda…

Yesterday some deer walked right up the street. Monday, we went sailing on Chesapeake Bay. Last week I saw the White House. I’ve eaten 5 crab cakes in 2 weeks. I’m in Bethesda, Maryland.

As the Talking Heads say: “How did I get here?”

In March, the 2 rounds of Bendamustine didn’t work. And my lower right lung partially collapsed due to my lymphoma growing around the bronchial tubes and squeezing a couple of them closed. When my PET scan on April 17 showed increased disease, I wasn’t surprised. My doctors at City of Hope took it as a signal to get even more aggressive.

My docs decided on a round of IGEV – which I actually had in 2010 in preparation for my auto transplant. I had a pretty good response to it then – so, we were hoping that I’d have a good response to it now. Even though it was going to kick my ass.

And kick my ass it did.

IGEV is given inpatient over 5 days – which turned into 8 days due to some high liver counts. In addition, the chemo itself was pretty tough to take and requires a lot of antibiotics and a close watch on my counts.

Because City of Hope was my planned transplant hospital, I had my IGEV there (instead of UCLA). Without going into detail, my in-patient experience was really difficult and miserable. The doctors did not communicate well, there was  confusion with my medications, and the room was a tiny, dark hole tucked in the corner of the old hospital with a bathroom so small I couldn’t fit myself and my IV pole in it.

After 8 days of in-patient and some serious ups-and-downs, Jen and I convinced the weekend doctor that I could take better care of myself at home. And she agreed. You know your treatment is sub-par when the attending doctor agrees that you would get better treatment at home then the hospital. The #1 thing I had to do was rest and recover and that was the absolute last thing that was happening at COH. So, we packed up and went home.

The next 3 weeks are kind of a blur to me. I was laid up pretty bad from the IGEV. I had to give myself IV antibiotics at home. My liver counts went down, my blood counts went up. I was exhausted, couldn’t focus on anything, and basically spent a couple of weeks going from bed to couch and back again. Also, my dry cough returned with a fierce vengeance. Not only is my cough an alarming sign of Hodgkin’s on the rise or other complications, but it drives Jen absolutely insane and I find it very disheartening. Unless I was laying prone, I was coughing constantly – to the point where I would throw up. Basically, I was useless.

Some time during my delirious recovery from the IGEV, Jen kicked into action on researching a clinical trial that she had come across back in February. Put your thinking caps on, it’s time for a little science lesson:

In a traditional allogeneic transplant, the patient is given enough chemotherapy to basically wipe out their bone marrow completely and destroy their immune system (similar to what I went through in my autologous stem cell transplant). Then, the patient is infused with stem cells from a donor. Ideally, the donor is a sibling with a 10/10 human leukocyte antigen (HLA) match. These new stem cells imbue the patient with an all new immune system, which is supposed to fight the lymphoma.

However, along with the (hopefully) cancer fighting properties, the new immune system may also attack the patient’s body resulting in graft vs. host disease (GVHD). A little GVHD in the patient is a good sign. Too much GVHD can be disastrous as the new immune system can really screw up the patient. The better an HLA match, the lower risk of chronic GVHD. But these things can’t be predicted. Although doctors have gotten a lot better at controlling GVHD.

Allo transplant becomes a balancing act between immuno-suppressing the patient so that they don’t get too much GVHD while waiting for the new immune system to take hold and start fighting the cancer. During this time (which could last for many months), the cancer has an opportunity to grow since the patient is basically off of active treatments.

There are a few different variations on the allogeneic protocol and different hospitals take different approaches. Some hospitals give a lot of chemo and really wipe out the patient, which is the traditional allo protocol. Recently, research shows that less chemo is actually better for an allo patient and most hospitals pursue a reduced intensity level of chemo (RIC). A few hospitals promote ‘haplo’ transplants, which is a half-match, usually a parent. There are many arguments for the many different protocols and the truth is that the research is ongoing but information and data about allo transplants have come a long way in the past 10 years.

The question for the patient is: What protocol is the best for them?

When I was told the results of my April 17 PET scan at City of Hope, the oncologist told me that “it was bad.” Translation: I was headed in the wrong direction for a successful allo transplant and, more specifically, to beat Hodgkin’s at all. It was pretty frustrating and sad. And COH could only offer me more IGEV and a traditional approach to an allo transplant.

Which brings us back to Jen’s discovery of a clinical trial at the National Institutes for Health (NIH) in Bethesda, Maryland: “Donor Stem Cell Transplant With No or Low-Intensity Chemotherapy Using Sirolimus and Treated Immune Cells to Treat Blood and Lymph Cancers”

For about the past 10 years, NIH has been using very, very low dose chemotherapy on their patients accompanied by the support of a M-Tor inhibitor drug called Sirolimus. The theory goes something like:

1. Don’t weaken the patient with excessive chemotherapy
2. Use Th2 cells (immunity cells) grown in the lab with Sirolimus to better control GVHD
3. Get the new immune system working quicker so the cancer doesn’t have time to grow

When Dr. Pinter-Brown at UCLA read the details of the NIH study, she strongly encouraged us to pursue it. Although I don’t have a lot of cancer compared to many, it is in a bad place and the window of opportunity between the transplant and the new immune system activating is worrisome for me. My right lung is already compromised and I don’t have a lot of room left in my chest for more tumor growth.

Looooong story short – Here we are.

We arrived in Bethesda on May 13. I was still in pretty bad shape post-IGEV and when I arrived I immediately needed 2 pints of red blood. But NIH is amazing and they are taking excellent care of us. No bullshit insurance companies to deal with – it is all government funded. No waiting for tests or appointments – everything is located in one building and their computer system keeps every doctor, nurse and technician up-to-date on my status. No bureaucracy of doctors, assistants, secretaries, administrators and all the other people that I had to go through to get my care – I have a direct line to my doctors and I see them regularly.

Most importantly of all, the doctors are confident that this is the best treatment option for me. They have an entirely different (and refreshing) approach to allogeneic transplants and patient care in general. The key is getting the new immune system in my body and active. When chemotherapy stops working for me, they want to get me off of it and stop the poisoning and weakening of my body. There’s no guarantee that the allo transplant will put me into permanent remission. I believe the statistics are the same for this protocol as any other for achieving remission. And Hodgkin’s Disease is particularly tricky to treat.  But, with my weakened bone marrow and increasing disease, an allo transplant is the best option for me no matter what. And this protocol isn’t going to make me as weak, sick and as vulnerable as traditional allo protocol.

NIH also believes in “whole patient care” – meaning I get to see whatever doctors I need to in a timely fashion as well as an entire team of pain and palliative care docs. Mental health, pain control, relaxation methods, additional therapies – it is all part of my protocol. No more doctors looking at me like I’m crazy if I mention nutrition or acupuncture as part of my recovery.

Today I had my 4th and final day of chemotherapy. I get the cyclophosphamide and fludarabine (as well as a Rapamune kicker on day -2) as an outpatient. The chemo regimen is so light that I’ll have very little side effects (some nausea and fatigue seems to be the norm). Due to all the chemo I’ve already been exposed to, the doctors told me that my immune system is already as weak as an HIV patient. My bone marrow is shot – time for a new immune system.

I go in the hospital this weekend expecting to have my transplant on Monday. After that, it is an estimated 9-14 day inpatient stay, depending on any complications that might arise. Then, I have to stay close to NIH for about the first 100 days as they continue to conduct tests, blood draws, scans and any other treatments that I might need to fight infections, viruses or complications.

Although the protocol keeps me in good shape, I will be severely immuno compromised for a long time. I’ll have the immune system of a baby (a very handsome and hairy baby) and I have to take the same precautions as when I had my auto transplant. It is expected that I’ll have infections and complications. As well as some GVHD to deal with. But my energy levels should be pretty good and hopefully I won’t be a ‘boy in a bubble’ all summer.

Ok…time to sum up this very long update.

The past 3 years have been difficult. The past 2 months have been extremely difficult. The past 2 weeks have been full of hope again. I’m looking forward to seeing what the next 100 days brings.

Bendamustine

After seeing how much traffic I got from my post yesterday, I realized that it was kind of unfair for me not to write at least a quick update on my treatment.

I just completed my 2nd round of Bendamustine chemotherapy at City of Hope. According to my last PET scan in January, I still have some active lymph nodes in my chest that need to be knocked down or eliminated before I can get into transplant. We are hoping the Bendy does the trick. If it isn’t working or not working enough, I still have a few other chemo options to try to get my disease as close to remission as possible. The other chemo regimens are harsher and more toxic than the Bendy, which is why we have been avoiding them. But they are readily available.

About a month ago the lower 2/3 of my right lung collapsed. Previous scans and x-rays showed that the lymph nodes were putting pressure on my lower bronchial tubes, but the doctors didn’t seem too concerned about it. I was having breathing problems for awhile (coughing, wheezing, shortness of breath), and the hope was that my chemo treatments would reduce the lymph nodes, which would relieve the pressure on my bronchial tubes, which would solve the breathing problems.

Ask me again why the doctors didn’t seem too worried about it? Well, there was really nothing that could be done and we had to see how the I dealt with the Bendamustine treatment.

Unfortunately, after my first round of Bendy in the beginning of March, there was some kind of inflammation/interaction/mucus build-up/complication and my lower lung got blocked and collapsed. I spent a few days in the hospital getting worked over and they took a look. But, at this stage, there is nothing the pulmonary doctors can do to get my lung re-opened.

The blockage is being caused by enlarged lymph nodes -> the chemo is supposed to reduce the size of the lymph nodes -> which will hopefully open up my airway.

That’s the plan. I’ve got another PET scan scheduled in a couple of weeks to see how things are progressing. And probably another bronchoscopy after that to take a look in my airways and see how things are holding up.

I mentioned yesterday that I’ve been pretty angry and frustrated… Without going into details, spending a week in the hospital and having my mobility limited due to my collapsed lung has taken a toll on me. And then add a shitty weekend of chemo on top of it all and that makes Stephen a frustrated boy. The past couple of days, I’ve been coming out of my chemo sickness but my shortness of breath and fatigue keep me pretty limited. I also have a constant and ridiculously annoying cough at all times.

So, I’m laying low. Conserving my energy. And holding out for the next round of scans and decisions.

 

Post Adcetris/Post Everolimus/Pre-SomethingElse

One step forward. Two steps back. Waiting. Waiting. A giant leap. A stumble here. Collapsing there. Getting back up. Moving forward.

Every new scan and every new treatment brings with it a mix of excitement, expectation, exasperation and frustration. And this week is no different.

My latest PET scan shows stable disease. My hot spots are about the same size and show about the same activity. I think. See, because of a dispute between Blue Shield and UCLA, I had to get my PET done at a different hospital. So, I had to get my doctor at City of Hope to take a look at my scan. And my doctor at UCLA doesn’t completely agree with my City of Hope doctor about his opinion of what to do next. With all of this in mind, we are meeting with Dr. Chen at City of Hope this Friday.

My current situation shapes up like this: Stable disease isn’t enough to get me into transplant. They want to see reduced disease. So I need more treatment.

I’ve been off any kind of treatment for about 3 weeks – I stopped the Everolimus because it was taking a toll on my platelet counts. And in the past two weeks, my platelets have been rising on their own. Last week they were as high as 55! (Normal platelet counts are around 140) My bone marrow biopsy doesn’t indicate any specific causes of the thrombocytopenia. It could just be bone marrow fatigue or side effects from the chemo. Hopefully, my platelets will continue to rise. The thrombocytopenia complicates matters because a low platelet count limits the amount of toxicity and treatment I can take.

Also, my bone marrow biopsy doesn’t show any signs of cancer – which is a very good sign.

However, my most troublesome symptom right now is my nagging cough. It could be a lymph node pressing against my airway. My x-rays, PET scan and check-ups don’t show any signs of pneumonia or infection. I’m taking some prednisone which seems to be keeping things in control – but I’m worried that the cough is a sign of some deeper problems lurking in the background.

The current plan is to get reduction in my disease while avoiding high levels of toxicity. The better shape I’m in heading into my allo transplant, the better my overall condition will be in the end.

My treatment choices seem to be:

• Bendamustine – a chemo that can be pretty harsh but shows promise in treating Hodgkin’s Disease
• Revlimid/Lenalidomide – I’m not sure how this drug works, but it is used to treat multiple myeloma and has shown promise for Hodgkins.
• Rituximab – Is used along with other therapies to target the B-cells that have CD-20 proteins
• ICE chemo – This is my “Kamikaze Treatment” that I’m keeping in my back pocket. ICE is a standard chemo for Hodgkins that I haven’t tried yet. All signs point to it working to put me in remission. But it has very, very high toxicity levels. If my disease goes into mega-drive, then I will consider ICE. But I’m avoiding it for now.

UCLA is leaning towards Revlimid/Rituximab. COH is leaning towards Bendamustine.

Most evenings, I lean towards a cold beer and a movie.

Are you starting to understand the whole “two steps forward/one step back” situation?

I am a work in progress. It is an extremely frustrating process punctuated by periods of fear. However, life goes on. I’m embracing my good days, resting on my bad days, and continuing to work towards the future.

For this post, I’ll let someone else take over the funny stuff.

Introducing: Woody Roseland and “Shit Cancer Patients Say”

Don’t let the highs get too high. Don’t let the lows get too low.

This is the advice I keep giving my friends and family.

If every piece of good news caused me to cry with joy…and if every piece of bad news caused me to cry with grief – I wouldn’t be able to cope as well as I do.

Exhibit A: This week, I was scheduled to get a Groshon catheter placed in my chest on Monday and then be admitted to the hospital on Tuesday. However, looming over all of this was my PET scan results from a week ago.

The scan showed some kind of small, vague PET activity in my chest. My oncologist ordered a CT scan the next day so the UCLA oncology team could take a closer look and see if this was something to be concerned about. They held their weekly meeting Monday morning and decided to review all of my PET/CT scans from this past summer in order to make a determination of whether to a) proceed with stem cell treatment or b) order a biopsy to try to figure out what these hotspots might be.

All of this adds up to no catheter and no treatment for me today.

Yes, this process is full of frustration and worry and anxiety and “two steps forward/one step back”. City of Hope believes that I should go into transplant immediately, regardless of the small activity. But UCLA wants to make sure I am in as complete remission as possible before beginning the process.

So what are my options?

Do I obstruct UCLA’s attempt to be thorough? Do I cry and worry and shut down? Do I continue to put one foot in front of the other, take a deep breath and practice patience? Do I turn to City of Hope and undergo my treatment there?

I was once told I have cancer. But, it was the “good kind” of cancer. Then I was told that the 80% effective treatment didn’t work for me. Then I was in remission. Then not. I suffered through 3 weeks trapped in a hospital room. I’ve had the chills so bad I thought my teeth would shatter. I’ve been poked and prodded, injected, poisoned, irradiated, hugged, cried over, prayed for, supported and insulted, knocked out, knocked down and picked up. I was present when two of my dearest friends got married to each other. And I was in the hospital when another two of my dearest friends got married. I’ve looked in the mirror and not recognized myself. I’ve apologized to my wife many times for being sick. I had a nervous breakdown. I’m pulling a 4.0 in grad school. I’ve laid my best friend to rest. I’ve held my friends’ newborn babies. I experienced loving kindness from a group of strangers like I never believed existed. Yesterday, a nurse gave me a hug and I cried.

What is the appropriate reaction when you are told that the life threatening procedure that might be your last chance at survival has been postponed?

For me – I went out to a lovely steak dinner with my wife and brother.

In all this, my brother donated his stem cells on Monday morning and filled up the bag in one session. Whenever I’m approved for the treatment, his stem cells are tagged, bagged and ready to go. One step forward.

He deserves a special shout-out. He handled the tests, physical, shots and pheresis procedure like a champion and I’m extremely grateful for his dedication, patience and perseverance. For a guy who is a bit scared of needles (and who isn’t?), he sure didn’t act like it. He never complained once. He took time away from his family and work to travel half-way around the world, eat hamburgers, watch some American TV and – oh yeah – give me the cells I need to stay alive. If anyone finds a Hallmark card for that, please let me know, because I don’t have the words.

My lifesaver

And a great dad

 

 

 

 

 

 

 

Any medical procedure – even a voluntary stem cell donation – causes a person to reflect upon their own mortality in some way. I hope he goes away from this experience appreciating the fragility of life a little more. And I hope he feels proud of what he’s done for me. It has been a joy to have him visit, to see his family every morning on Skype and to get to know my brother a little bit better.

For now, I’m off the SGN-35 and I’ll let you know as soon as I know what’s going on with me. This should just be a minor hiccup in the process of getting through an allogeneic stem cell treatment. But we shall see.

Round 3

Ding!

I guess it is best to start back at the beginning of the middle.

About 3 months ago I got sick. Doctors thought it was a virus. I felt better after a few days but I was left with a lingering cough. After a couple of weeks of that, I started to get nervous. I followed up with a respiratory doctor who said my lungs were in good shape and it was probably an irritation in my trachea or somewhere so he gave me some asthma medicine. The theory was to treat the simple, obvious stuff first before worrying about the more complicated stuff.

The asthma medication didn’t help. As it didn’t 2 years ago and 1 year ago.

I started to feel pressure building in my head, puffiness behind my eyes and chest pain. I went to see my interventional radiologist (my homeboy, Dr. Loh) and he booked me a CT scan. This was about 5 weeks ago.

The CT scan showed that the tumor had grown a little since February and was pinching my vena cava between my stent and my heart. This didn’t come as much of a surprise to me as I was feeling the SVC symptoms, but I still held out hope that somehow it was scar tissue or some such. A PET scan soon after confirmed the hot spot. And here we are.

Apparently, the BEAM chemo and autologous stem cell treatment didn’t stick. The problem seems to be that the size of my mass (referred to as a ‘bulky mass’) can hide all sorts of rogue cells. Difficult to get them all. And not uncommon for a case like mine to not get taken care of with the ABVD and even with the more intense BEAM chemo and stem cell transplant.

After consulting various doctors – both in person and online – we followed up with Dr. Robert Chen at the City of Hope. COH has access to a drug called SGN-35 (or Brentuximab Vedotin). This drug is on the verge of FDA approval so I can get access to the drug through an expanded access trial.

Dr. Chen and his team jumped into action and I was approved for the drug within a week. I had my first infusion on May 5th. The drug is a type of chemo that targets CD30 cells, a defining marker of Hodgkin’s Lymphoma. This means that the drug is much more targeted than traditional chemo. This helps its effectiveness and also reduces the side effects.

I felt pretty crappy for a few days after getting the infusion – fatigue, slight nausea, lack of appetite. Typical chemo stuff but pretty mild considering what I’ve been through. And I was mostly back on my feet 4 days later. In addition to lighter side effects, I only get an infusion every 3 weeks which means I have lots of ‘normal time’ in between infusions. And I won’t have any long stays in the hospital for each infusion – I’m in-and-out in a few hours.

And, I can tell you with confidence, that it is working. The swelling in my head has gone down completely. My cough has completely disappeared. I don’t get dizzy when I bend over (as much). At the very least, the tumor around my SVC has receded allowing me some relief. My hope is that SGN-35 destroys the tumor – really beats the shit out of it – and it gets as small as possible. COH will give me a PET scan after my 2nd or 3rd infusion.

Now, SGN-35 isn’t a cure. I will need an allogeneic stem cell transplant when I hit full remission. This is similar to the stem cell transplant I had in November, except this time I will be getting someone else’s stem cells (hopefully, my brother if he is a match). The theory is that my immune system can’t fight off the Hodgkin’s Disease so hopefully someone else’s immune system can keep it at bay. I’m not looking forward to another month in the hospital and all of the additional complications that come along with an allogeneic stem cell transplant…but let’s worry about one thing at a time.

On a more personal note, I can’t tell you how difficult it has been for me to open up WordPress and have to continue writing about my experiences with cancer. It fucking sucks. And I’ve been putting it off for quite awhile.

Some people asked me about a month ago if I was going to ‘wrap up’ my blog in some way (this was before I knew for sure that I still had cancer). Other people have asked me to keep blogging because I’m a good writer (which is flattering).

I’ve said this before – this blog is a weight around my neck. It represents everything that has gone wrong with my life in the past couple of years. I look back on the early posts – so carefree and witty, so confident that Hodgkin’s Disease was going to be a footnote in my life – not the condition which would define my 30’s. And I can see myself slowly, over time, growing up and growing into being a long term cancer patient.

So, why write an update today?

I got a message last night from Ben and a comment today from Lisa.

I have no idea who these people are (although I’ll get to know them soon enough). Lisa is on prednisone – I assume she also has Hodgkin’s Disease. Ben is on his way to a stem cell transplant of his own in England. They both thanked me for writing the blog. As have others in the past few months.

To both of you – and to Karin and to Jess and all the others – I say: You’re not alone.

It took me months to figure that out. I’m still figuring it out. If these few words about my experiences can offer some insight, some education, some helpful links…then it is worth it.

If stories about constipation, being called “Stephanie” 3 times in one day at your new hospital, fighting with pharmacies, finding inspiration and strength and some kernals of wisdom about how to keep fighting are of interest to you – then feel free to continue to lurk around this blog.

Someone pointed out to me that I used to write on the blog as an emotional outlet. I don’t really need to do that anymore. Somehow, sometimes, I’ve come to accept cancer into my life. I still struggle, but my struggles have evolved. Call it one part resignation, one part humor, and a big dash of “getting on with it”.

I’ll write soon about changes we are making in my nutrition to help support my immune system and my weakness for blueberry muffins.