Tag Archives: autologous 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

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…”

Recovery

What happens after an autologous stem cell transplant? You get really tired and you have to be really, really careful about germs.

My recovery has been going pretty well the past few weeks. I decided to give myself a long break to recover – one of the reasons I haven’t updated my blog in awhile. I’ve spent a lot of time at home or close to home and we largely avoided the holidays. It would have been difficult to participate in the holiday spirit when I couldn’t go to shopping malls or be around large groups of strangers, Jen was working and I have to take a nap in the middle of every day. So we gave ourselves a much needed break. No presents. No cards. No running around.

A couple of weeks ago I had to be admitted to the hospital with fevers and chills. I’ve never experienced anything like it before – I was shaking so bad I thought my teeth were going to break. It was pretty scary while it was happening but the doctors and nurses were comforting when they told us that they see this type of thing a lot with stem cell patients. It wasn’t unusual for a patient to get fevers and have to spend a few days in the hospital under observation. They really did spring into action. And, although it sucked miserably to have to spend another week in the hospital, we did figure out that I had a blood infection and I got IV antibiotics and it all turned out okay.

I also had to get my PICC line removed for a couple of days. When my old friend Dr. Loh (my interventional radiologist) put a new PICC line in, the 10 minute procedure ended up taking an hour and a half. My tumor, stent and the wear and tear on my blood vessels makes dealing with the veins in my chest anything but simple. The whole experience was a solid reminder that I’m still pretty fragile and I have to continue to play it safe for the next couple of months.

My blood counts are still low, but stable. My hair is starting to come back in and I even have a 14 year old style moustache that I have to shave every couple of days. And I’m impressed with the rapid growth of my eyebrows.

During all of this, Jen and I have managed to get a few things done. I finished my graduate course and get an A on my final paper. Jen and I did some redecorating around the apartment. I’m in the finals in my fantasy football league. We sneaked away for a couple of nights to the Santa Barbara area for some quiet time. And Jen has embraced home cooking much to the benefit of my tummy and my taste buds.

All in all, its been going well.

Before I sign off, there are some other links that are important to share.

For women with cancer, there is a service that provides housecleaning and maid services. Definitely a good resource to take some of the load off and give yourself a break while going through treatment. Along with meals, this is exactly the kind of thing that really helps out cancer patients:  http://www.cleaningforareason.org/

Also, progress is constantly being made to improve the chances of lymphoma patients. This article describes how a new vaccine can extend disease-free survival for non-Hodgkins patients (http://www.sciencedaily.com/releases/2010/12/101206161742.htm).

And this article is about the development of a new drug that has shown 34 percent remission rates for Hodgkin’s patients (http://www.reuters.com/article/idUSTRE6B40WG20101205). This is the new SGN35 drug that seems to be doing wonders for my dear Hodgkin’s buddy Karin.

That’s all for now. Thanks for the platelets, holiday cards, love and support. And here’s to a healthy and happy 2011.

 

Day 22/+13 = Freedom

I go home today.

My counts have been steadily rising for the past few days. I haven’t had any fevers the entire time I’ve been here. I’m off the antibiotics. I go home today. Whew.

My little stem cells are fusing with my bone marrow and pumping out fresh white blood cells. My red blood count is still low. My platelets are very low. I’ll be getting fresh infusions over the next few weeks until things stabilize.

How to sum up the past 3 weeks? The food is not great. I had to really mellow out in order to deal with a lot of time spent in my room. Call Of Duty: Black Ops was a blessing to get me through the past week. I didn’t spend as much time on schoolwork as I should’ve. I’m tired of people coming into my room every hour. I’m tired of being woken up at 4am to have my blood drawn. I’m tired of doctors and nurses waking me up at 7am to ask me how I’m feeling (the answer is always the same: sleepy). I’m quite relieved that I didn’t have mouth sores like I expected.

Now I’m severely immuno-compromised. My  body doesn’t have the antibodies it once had and I’m very susceptible to infection, viruses and other nasty things. I have to avoid crowds. Avoid sick people. Avoid little kids. Avoid pets. Wash my food thoroughly. Go to matinees. Use lots of hand sanitizer. Wear a mask if I’m worried about being around a lot of people. Basically, I need to use a lot of common sense.

In addition to all that, I’m pretty anxious. They said it might happen. I’m a little scared. I’ve been cooped up here for 3 weeks, but I’ve also been under 24 hour care. I haven’t had to worry about anything else but my health. I’ve avoided lots of phone calls and responsibility. I feel like getting out of here will be a little overwhelming for a few days until I readjust. But I know everything will calm down, especially if I stay healthy and fever free.

That’s the scoop. I’m waiting for the doctor to come in and give me my marching orders. Jen has been taking bags of stuff home the past couple of days so I should be able to walk out of here with my computer, blanket, pillow and Playstation.

As always, thanks for all the love and support over the past few days, weeks, months and years. I look forward to seeing you soon.

Day 13/+4

Happy Birthday to me.

4 days ago I had my stem cell transplant. It went without a hitch. 15 minutes, the taste of garlic, then a nap. The doctors and nurses were very pleased. That night, the nurses brought me a birthday cake and sang me a birthday song.

I’ve been doing extremely well. I had a few days of dry heaves and nausea. Headaches. My mouth sores haven’t come in yet, but my mouth feels a bit raw. My stomach does flips pretty regularly. I definitely feel tired. More tired with each passing day.

Two nights ago I convinced the nurse to let me off the IV pole since I was only getting a slow drip of hydration. Ah, sweet, sweet freedom. It means a lot to not be tethered to that pole. Soon, they will start me on an antibiotic drip so this won’t last long. But I am very much enjoying the freedom of not having tubes attached to my arm.

My counts are low and still dropping. My WBC is .37, HGB 10.1 and platelets down to 17. Today is the first day where I am officially neutropenic. Which is a good thing – my counts need to bottom out and then they will start going up again. Hopefully, by the end of this week.

My goal is to get out on Friday – that would be +9. The earliest we’ve ever heard someone recovering is +8. The average is +12. The nurses and doctors chuckle to themselves when I tell them my goal. Because it isn’t really up to me – it’s up to my counts. The best I can do is stay on my feet, keep eating and drinking and stay infection free. The doc’s tell me that I should still expect a few bad days. I haven’t gotten any fevers yet. I haven’t gotten my mouth sores yet.

So, what’s a guy to do to keep himself occupied while cooped up in here?

I’ve been slowly picking away at a paper I have due for my class. This place isn’t the best for concentration and heavy thoughts on communications theory, but I’m doing the best I can.

For the first few days, I didn’t want to get in a pattern of sitting around and watching movies and a lot of TV. But I’ve mellowed a bit and now I have no problem watching a film in the afternoon. I’ve started watching The Wire – which is as awesome as everyone says it is.

A bit of Skyping. Some fantasy football. A couple books. I’m pretty chill right now. I know these days will pass. And I am extremely grateful that I’m feeling pretty good. This isn’t going nearly as difficult as I thought it would be, from a physical standpoint. I walk a lot each day. I stay out of bed. The doctors are proud.

But more importantly, Jen is proud. She is working her tail off to keep me in clean clothes and good spirits. And I’m not going to let her down by moping and complaining and feeling sorry for myself.

Actually, I’m not going to let any of you down. Thanks for all the cards and well wishes. Big thanks to those of you who have taken up the challenge and donated your platelets. That’s a big effort on my behalf and I owe each and every one of you a beer and a burger (which, I hear, is good for platelet production).

For now, here’s some pics of me from the past few days…

Day 4/-5

Hello all, from my perch on 6E, UCLA Ronald Reagan Medical Center.

Day 4 of my visit. 5 days until I get my stem cells put back in.

So far, so good. I’ve been handling the chemo pretty good, or so the doctors tell me. A little nausea. A little headachy. A little worn out at night. Apparently, the first and last days of chemo are the worst. The middle days are pretty benign. I get about half way through the day in good health until a bit of queasiness sets in. Right about…10 minutes ago. So, I’ll be friends with the porcelain god for the next few days.

They tell me that next week is the roughest. Once my counts drop I’m going to get visited by all sorts of side effects, most of which I’ve had before. So it is kind of like expecting old friends. Or old enemies, I guess. Mouth sores will be the biggest problem. Nausea. Lots and lots of fatigue.

I do my laps around the floor. I’m not allowed to leave the wing, so they are pretty quick trips. I’m sure they will get longer as I slow down. They also gave me an exercise bike, which tells me that they think I’m young and active or they think I’m fat. I’m so full of saline right now, I’m leaning towards the latter.

I’m also pushing to get my room switched to the other side of the floor. I have a pretty terrible view of the other wing of the hospital. And people can see in my room at night as they wait for the elevators. I’m not doing anything exciting for them to see…but still, the other side of the hospital has a view of Westwood and the ocean in the distance. The sun makes a big difference and since I’m here for an extended stay, I might as well push for the best comfort possible.

So, between the computer, the DVDs, books, exercise bike, PS3, magazines and other assorted oddities…sounds like paradise? Except for the constant stream of doctors and nurses, beeping IV poles and essentially being held prisoner in this room. At night I get some anxiety when I try to fall asleep. As long as I focus on the short-term, things stay together. I can’t think about tomorrow or next week or two weeks. I can only keep my eye on pieces of sunshine and know that I’ll be out there soon.

And we’ve been decorating – Ezekial and Eliana brought me a framed picture of a frog and a rainbow. I’ve got photos of all the dogs and cats and kids in my life (which I have to keep explaining to the nurses that none of them belong to me). I’ve got inspirational phrases and a calendar to count the days. And one photo of Golda Maier (which needs no explanation…right?)

Like home. Only with more poison.

I’ll try to check in again before things head too far south next week.

Be well. And thanks for thinking of me. I’ll see you soon.

Ok..for real…let the stem cell begin

Hello again.

I realized that I probably left most of you thinking that I was already in the hospital in the middle of my stem cell treatment. Alas. This is not the case. I had a detour on my way there, but I’m back on track.

Two weeks ago I had one final PET scan to make sure everything was hunkey-dorey in my chest. But things are not hunkey-dorey. I have a small hotspot where my trachea divides, near my bronchial tubes, just to the left of the Isles of Langerhans (okay, that last one is a deep inside joke). I think this little spot is attached to, but not part of, the large mass in my chest. That large mass, by the way, is completely PET negative, which is a good thing. But what is this little, vague spot?

I consulted with a surgeon and a pulmonary doctor to see if they could reach the spot and get biopsy. For a number of reasons – involving the risk of cutting my chest open to get at this little spot, the risk of catastrophic failure if they accidentally puncture any of my major vessels, the difficult location of the little spot and the lack of tissue that a needle biopsy would provide – they can’t get it. At least not in way that would provide satisfactory results or not possibly kill me.

During this time I also got my stem cells harvested – in 1 day! For some people it can take up to a week or more, but I guess my bone marrow was highly motivated. I got a catheter put in my chest, went to harvesting and got the catheter taken out after the weekend. I’m left with my trusty PICC line in my arm…and I’m grateful that I don’t have any other tubes coming out of me.

So, after that little hiatus, the ‘committee’ decided that I should continue into my stem cell treatment after all. I’m not sure who exactly is on my ‘committee’ – my oncologist, the stem cell transplant coordinator, Jack Bauer, C. Everett Coop, the ghost of Jonas Salk and possibly my grandmom (affectionately known as Doc Julie). Whoever they are, they are unanimous in their decision. So away I go.

I’m admitted into the hospital on Tuesday, Nov. 2.

I get chemo for 6 days, followed by a day of rest.

On Nov. 10, I get my stem cells infused back into me. This is referred to as Day 0.

I spend another 1 1/2 to 2 weeks in the hospital, feeling like crap and under observation in semi-isolation. When my white counts creep above 50, I can go home.

My food will all be processed and sterilized. I can’t take a shower as any germs or chemicals in the pipes might get aerated and I might breathe them in (I can take gentle baths). I will brush my teeth with a sponge on a stick. I will work on my grad school assignments as best I can. I will play PS3 and watch movies. I will be patient. I will meditate. I will read. I will walk around the hospital floor to keep my blood flowing (I can’t leave the floor at all). I can have visitors, although they have to be not-at-all sick and not-at-all have been around anyone sick. No physical contact (except maybe feet rubs). No outside food unless approved by doctors. No plants.

Sounds like a vacation, eh?

I’ve been through some pretty bad chemo in the past few months so I think I’m pretty prepared for what’s to come. The worst part will be being trapped in the hospital for 3 weeks. I think I go crazy without fresh air, too many fluorescent lights and not being able to see farther than the opposite wall.

But breathing will help. Lots of deep breathing.

I’ll keep in touch and let you know how it goes.

Let the countdown begin.