Tag Archives: allogeneic stem cell

Register for the bone marrow registry

You could save the life of a little boy, a mother who wants to spend more time with her kids, a father who supports his family, a teenager with their whole lives ahead of them, or a senior with extraordinary tenacity.

It’s painless for the donor. And it is important.

National Marrow Donor Program

Day +60

I’ve been busy.

The past 60+ days have been a roller coaster ride, for sure. So much was changing every day, so much time spent back and forth to NIH, so much time spent in the hospital, so much time resting. I’m not sure how to sum it all up (and still be profound and funny).

The benchmarks for my treatment are day 30/60/100. On these days, I get PET/CT and we evaluate my progress. I had my day 60 scans this past week and my tumor is stable – no new growth. Which is great news. We can’t evaluate whether the tumor itself is much ‘colder’ or less active than it has been in the past – although the scan seems to indicate that it should be. At this stage, still so close to my transplant, the important thing is that I’ve been off chemo for months now and the tumor isn’t growing.

These scans serve as benchmarks and data points for my treatment. Days 30/60/100 are arbitrary days where they collect information about how I’m doing. The actual time frame for showing results and achieving remission could take months or years. However, my new immune system is definitely fired up and I feel extremely confident that its doing what it is supposed to be doing.

A big indicator is that I developed a moderate level of Graft vs. Host Disease on my skin and in my guts (GI tract). The GVHD put me in the hospital for 2 weeks as I had to stop eating completely, go on bunch of support drugs, and go under the careful watch of my NIH team. Currently, I’m on a treatment plan of very high dose steroids (140mg/day of Prednisone) and Tacrolimus as an immuno-suppressant. It is working well and things are improving. But I can’t stay on this regimen for too long as these drugs inhibit the ability of my new immune system to battle my cancer.

Basically, it is a balancing act between not letting the new immune system run wild and overrun me with GVHD but also letting it do its work. The process takes as long as it takes to get my meds at the best level for this to work.

In the meantime, I’ve spent 35 days as inpatient through the last 60 days, including transplant days and 2 stints as inpatient. I can’t even begin to describe all of the daily ups-and-downs that I went through during these times. Complications with my PICC line/catheter kept me going back and forth to Interventional Radiology. Blood pressure spikes and drops. Lots of scans when there was any sign of possible infections or complications (none so far!). IV drugs. Oral drugs. Anti-fungals. Anti-virals. Steroids. Stomach medicine. The list goes on.

But this isn’t a complaint – more like a big thank you.

The care at NIH is far superior to anything I could have imagined. Part of it is being under a clinical trial – the rules are strict and they keep a very close eye on you. But NIH is so much more than that. The doctors really care about my progress because they care about their research and making people better. They earn less than private doctors, but give more attention to the patient. I can text my oncologist with questions. He’s got my back when I have personal run-ins with other doctors or staff. He’s protective and caring. And this attitude spreads through the entire team – from the nurse practitioners through the administration to the floor nurses. I’m surrounded by amazing people – people who know my case, know me personally, and do everything they can to accommodate me while pushing for the best results possible.

There is no insurance. There is no waiting. I’ve seen the dentist, ophthalmologist, interventional radiology, nutritionist, bronchial specialists, infectious disease doctor  and more. My drug regimen keeps changing but we never have to pay for drugs. There is also a huge support system in place that provides acupuncture, massage and various therapies.

We are just blown away. I feel safe. We feel well taken care of. If I have to go inpatient, I know it is for the best reasons. And even if I’m bored or uncomfortable, if they tell me to stay inpatient then I listen. I’m not in any hurry to put myself at risk because I don’t want to be in the hospital – I let them make their evaluations and take their time.

This is a one way road. As it was explained to me – after an allo transplant, my baseline is changed forever. I may have to deal with chronic GVHD – sensitivity to the sun, dry eyes and mouth, skin rashes, or other things. It could pop up soon or it could be months away. I’m different inside. Forever.

But NIH will always follow me. I’m going to have to do some shuttling back and forth for awhile, but Bethesda is a nice town and I have a pretty good support system close by.

For now, I’m riding out the GVHD and getting my diet back on track. Treating the skin. Resting but I have enough freedom to make small trips out. The fatigue is impressive, to say the least. But I pace myself and I’m working to get my strength back.

This has been quite a journey. I was very sick when I arrived here while recovering from my IGEV chemo. Jen and I have crossed many bridges and there”s many more to come.

But I’ve got confidence and patience.

And I’ll be in touch.

Day +9*

*I can’t believe it has been 3 years and 2 months and I’m still writing this blog. Let alone that the days of my life have been restarted not once, but twice. So here I am again at +9 days after my transplant. Sigh.

The chemo was mild, the transplant was uneventful and both mine and Jen’s birthdays whipped past us as we were largely cooped up in my hospital room.

After all the different (and difficult) protocols that I’ve been through, it was hard to believe the doctors when they told me how mild this treatment would be. But they were right. Except for some stomach issues and testing for viruses and bacteria (all negative), I’ve been a perfect patient. I never broke a fever. My ANC count never dropped below 1, so I never truly got neutropenic. I spent a lot of time out of bed and wandering around NIH.

The care here has been second to none. They don’t burden the patient with a lot of unnecessary restrictions and try to give them as much independence as possible. I’ve been able to eat what I want (within the common sense guidelines of  being post-transplant). I’ve been able to leave my room and even go outside for walks and some fresh air. Yes, I spent a lot of the time snoozing in my room or just resting. But staying in good shape enough to get up and go out has been extremely beneficial.

The doctors and nurses listen to every complaint and follow up very quickly. Pain in the back – walk yourself down to x-ray. Runny nose – let’s take a nasal wash and check for viruses. Everything happens extremely quickly and everyone is in the loop. I very rarely had to explain my story.

NIH also provides “whole body care” which includes a variety of supportive therapies. Therapy dogs, acupuncture, massage. A library. Musicians play every day in the main atrium. As a patient, you really expect to leave here better than when you came in.

As my brother succinctly put it: “When you put aside the insurance companies and lawyers, you can get on with the business of healing people.” And that’s exactly how it feels here.

My next steps are baby steps. Once I’m released, I have to return to the hospital every day for blood tests. I’m getting blood and platelet infusions as needed. Although I’m not a ‘boy in a bubble’, I have to take many precautions against catching a cold or getting sick. Masks and gloves when in crowded public places. Hand washing like I’ve never hand washed before. If I spike a fever above 100, I’m back in the hospital. And there’s always risks of Picc line infections or CMV or other nasty bugs that lurk inside me.

Then there is the GVHD (graft v. host disease). The sun is my enemy – it can really aggravate GVHD. I have to wear long pants, long sleeves, hat and sunscreen in the sun. I’m closely watched for any signs of GVHD so they can get a grip on it before it gets too bad.

It’s all do-able. And I’m in good shape. The goal is to stay this way.

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”

Heroes

Long time overdue update. My excuse is that I’ve been trying to live my life as a person who doesn’t maintain a blog about cancer. And so, sitting down to reflect on my trials and tribulations has become quite an effort for me. But I digress…

When last we left off, I was getting a couple of extra doses of SGN-35 (Adcetris) and waiting to see the results of an updated PET scan. How are the Duke Boys gonna get out of this one? (cue banjo music)

Will the General Lee land in the hospital? The infusion room? Or safely at home playing Playstation?

I had a clean PET in August. My PET in the beginning of October showed a couple of faint hotspots in my chest. My PET at the end of October showed the same couple of faint hotspots. The presence of any activity was enough for my doctors to postpone my allogeneic stem cell transplant and try to get me into complete remission.

My main tumor is inert. The activity looks like it is based in two lymph nodes in my chest. These lymph nodes are located near my right lung and somewhere near my spine. Hodgkin’s is already notoriously difficult to biopsy because of the mix of cells. And I’m definitely not going to let a surgeon crack me open to conduct a cancer easter-egg hunt in my chest. So we are moving ahead with the information we have.

For now, I’m on a drug called Everolimus (Affinitor or RAD001). It has been FDA approved for kidney and liver cancers as well as for those who have had transplants. It has shown promise in treating Hodgkin’s Lymphoma, but it is still in the trial phase. I’ve been taking it for over a month. The on/off pains I had in my chest went away. I don’t have any Hodgkin’s symptoms (itching, night sweats, cramps). And generally I feel really good. You wouldn’t even be able to tell that I had the big C by looking at me (unless I bitch you out for parking in a handicapped parking space without a permit…but that’s another story).

I do get fatigued in the middle of the day. So I nap a lot. And I developed some mouth sores last week which slowed me down for a couple of days. I use a rinse made up of water, baking soda, salt and hydrogen peroxide which seems to keep mouth problems in check. I highly recommend it for any cancer patient – but don’t tell the nurses that you are rinsing with hydrogen peroxide as they will freak out.

Also, Everolimus can cause serious problems with the lungs so the doctors keep a close eye on any cough or shortness of breath that might develop.

Everolimus also affects my platelet counts, which are already critically low after my auto transplant last year. A normal platelet count is between 150,000 – 400,000…I hover around 45,000. And while on Everolimus, it has dropped as low as 19,000 (which led me to get a transfusion). The doctors are keeping a close eye on it and I get blood tests every week.

Here’s where things get complicated. Or, to beat a bad analogy into the ground – here’s the part where Boss Hog has the banker locked in jail while Uncle Jessie needs his money to make a payment on the farm before Roscoe and Enos evict him. Or something like that.

Everyone agrees that an allogeneic stem cell transplant is the only procedure that has been proven to show consistent results in getting 10-30% of patients with relapsed Hodgkin’s into long term remission. And, with my brother being a 10/10 match, this is the procedure for me.

However, there are different schools of thought regarding when to have the transplant. For some, I should have the transplant as soon as possible, since we don’t want to give the cancer a chance to grow and I’ve already been through a lot of toxic treatments, chemo regimens, radiation and SGN-35. If the cancer spreads or grows, it could put me in a bad situation for my allo transplant. I’ll call this the “Act Now” plan.

On the flip side, there are definite drawbacks to having an allo transplant too soon. The patient should enter an allo transplant under the best possible circumstances – no active disease, some history of remission/disease control and not too soon after a failed auto. There are quite a few examples of failed allo transplants taking place after failed auto transplants. And it makes sense to be sure that the disease is under control before putting myself through all the difficulties of an allo transplant.

I have to consider that an allo transplant is rife with complications. The graft vs. host disease can get bad. The procedure itself is debilitating. The recovery period is difficult. The chance of getting pneumonia, virus or infection is quite high and can be catastrophic. The hospital food is going to suck.

For some, the allogeneic transplant is basically a last resort. Putting all my cards on the table. Going all-in. Playing my hand. Pis aller (as the French say).

And, to be honest, the vagueness of the hotspots in my chest followed by a clean PET scan in August makes me suspicious that the activity shown on the scans is active disease and not my lymph nodes reacting to the SGN. For one, I don’t have any Hodgkin’s symptoms. Also, the chest pain has gone away. And my main tumor is inert. Could I already be in remission? Possibly. But without a biopsy we have to move ahead with the information we have available – and that shows hotspots.

Jen Berry (aka Encyclopedia Berry, Girl Detective) has been doing a ton of research about my situation. She has been talking to other Hodgkin’s patients, researching clinical trials and considering 2nd opinions. Some new information has come to light.

1. I want to go in for my transplant under the best possible circumstances.

2. There is a lot of hope for treating Hodgkin’s Disease like a virus through the development of T-cells which attack the EBV virus present in some Hodgkin’s tumors. I’m not sure of the numbers and my grasp of the science is fuzzy – but Dr. Bollard and Dr. Heslop have made huge gains in early clinical trials at Baylor University. Unfortunately, my tumor is EBV negative so I do not qualify for Dr. Bollard’s current study. But they are also pursuing studies for EBV negative patients or patients who merely show EBV in the blood (not just the tumor). Consult ClinicalTrials.gov for more information. One day it may be possible that my body treats the Hodgkin’s like a virus and keeps the cancer under control on its own.

3. Among Hodgkin’s patients, there is a man…his name is whispered in the forums…he has attained almost mythical stature. They call him “Dr. O”. And, apparently, he is the guy to see if you’re a relapsed Hodgkin’s patient. We contacted Dr. O (also known as Dr. Owen O’Connor at Columbia) and he got back to us right away – a good sign. We are planning on traveling to NYC to see him in the next couple of months.

We are trying to make sure we are pursuing the best course of action for me to either beat this disease or find a path towards long-term disease control.

Most people are part of the 80% that get go into long-term remission after front-line ABVD treatment.

Some people have the perspective that Hodgkin’s Disease is something they can live with and maintain, like diabetes or HIV. They live their lives to the fullest extent they are able.

Every day, doctors and researchers are developing new plans of action, new drugs, new treatments to fight lymphomas and cancers. For many, it is a matter of hanging on until the magic bullet is found or a treatment works for them.

Which brings me back to the title of this blog: Heroes.

Some people still comment to me about my bravery, sense of humor or chutzpah through all of this. Which is kind and appreciated. I try to set a good example. I’m humble about it because I don’t feel special. I know I’ve been changed and affected by my experience, but I’d like to think that I’m still just me. Kind of a know-it-all. Kind of lazy. Kind of a nerd. Just a little more toxic inside than the usual person.

So who do I look up to? Who are my heroes?

First and foremost: my wife. If you’ve met her, if you’ve talked to her, if you’ve ever eaten her cooking, if you have only read her Facebook –  then you know she is a special woman and I’m lucky to have her by my side.

Friends and family. Thanks for keeping me sane. For checking in. For the distractions and support. For making me feel normal when life is abnormal. For football Sundays.

My doctors and those that get paid to care for me. Dr. Pinter-Brown. Dr. Chen. Dr. Eredat. Dr. Loh. Grace Cherry. Suzanne Levanas. Donna Pall. The nurses (so many nurses). Even my medical insurance and disability insurance representatives have supported me over the past two years – shout out to Lynn Goodenough and Sheryl Quarnstrom! My team. I honestly believe that they do it because they care, and that makes a huge difference.

And here’s where the line comes full circle – All the other Hodgkin’s patients.

It sounds ridiculous for me to acknowledge the strength I get from other patients when I am so flippant about my own role as someone who sometimes inspires others. I think this is part of what they mean by the Cancer Community. All of us poor, pathetic, nauseous, gassy, sometimes-bald patients looking for a cure, looking for answers, looking for comfort. We have nothing in common except for drugs, disease, radiation, stem cell transplants and cancer. Yet…

Jen is more in touch the larger world of Hodgkin’s patients than I am. I just don’t have it in me to read the Facebook posts or follow all the blogs. To try to avoid the sad stories while looking for the positive ones. Who is getting treated where and by whom? What’s the next big thing? Who qualifies and who doesn’t? I find it difficult enough to keep track of my own disease, let alone everyone else’s.

But recently it seems that Jen has tapped into a new community – people who are living their lives with Mr. Hodgkin’s. He’s more of an inconvenient roommate than an unwanted visitor. These are people who keep on keeping on. Not as the head of some kind of foundation or as a spokesperson. Just…people. Who happen to be statistical anomalies. Who feel compelled – like I do sometimes – to share their experiences and information with the greater community in the hopes that what they’ve been through can help someone else down the road.

Karin and Becca and Chris and Ethan and Ben and the rest.

I just went back and read some Facebook posts and looked at some other Lymphoma blogs. It only reinforces my feelings that I’m not special. That none of us are special. We are just people. Living lives with hopes, fears, dreams, compromises, gripes, laughter and tears.

Maybe we live life a little more raw then healthy people. I don’t know.

Let’s just say, this episode is “To be continued…”

Patient’s patience

I had another dose of SGN-35 (Adcetris) last week and I’m going to have another PET scan end of next week (or thereabouts).

I decided to not go through with an immediate biopsy because the chance of getting a useable sample was very low and I felt the risk and discomfort was too high. The biopsy would have resulted in:

  • Positive sample = more treatment
  • Negative sample = we still couldn’t be sure that the sample is truly negative because of the small sample size so it would still be inconclusive
  • Inconclusive sample = Inconclusive

With this in mind, my current course of action is to get another PET scan and see if the hotspots go away, stay the same or grow.

If my PET is clear, then it is onto my allo transplant.

Anything else and I’ll either definitely need to get a biopsy or I’ll have to get more chemo treatment to put me into complete remission.

The goal is still the same – allogeneic stem cell transplant.

But we now understand that going into the transplant as close to complete remission as possible is the best course of action. Even if it means more treatment. Even if it stresses us out.

The good news is that there still seem to be a number of chemotherapy treatment options to get me into remission.

One of the most promising options is a study being done at Baylor by Dr. Bollard. If my tumor shows signs of EBV (which is related to the T-cells and found in 50% of Hodgkin’s) then I might qualify for this treatment. We are getting blood and tumor samples tested now.

http://www.texaschildrens.org/carecenters/Cancer/perspectives/archives/spring06/Bollard.html

On a side note: I spent a few minutes this morning reading Hodgkin’s support group forums. I haven’t spent any time in the past looking at these websites as I know they are mostly filled with sad stories and people looking for comfort. Too many questions, not enough answers and too emotionally taxing for me. Jen takes on most/all of the research on herself – which means she also takes on the emotional burden of being aware of other people’s experiences.

However, after reading a few posts, I became even more inspired to keep fighting and develop a new plan – if I need one. Eat healthy. Stay active. Push for the most demanding treatments possible to knock this thing down so I can get into my allo transplant.

“History is written by the victors.” – attributed to Winston Churchill

Or, to put it another way:

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.