Tag Archives: SGN-35

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:

SGN-35 just approved by FDA

A benefit to all Hodgkin’s patients.

SGN-25 approved by FDA.

http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm268781.htm

Time to share some good news

Progress progress progress.

I’m getting my 5th infusion of SGN-35 this Friday. It gets a little harder each time, but the side effects are not nearly as harsh as my previous chemo regimens. Some nausea. Some sleepless nights. A lot of fatigue. My arms and legs sometimes shake and tremble (which isn’t uncommon on this drug). I’ve been having some pain and neuropathy down my right arm and right side – which is the most expected side effect of the drug. On some days I’m wiped out. But most of the time I’m pretty functional. Re-reading this sounds like the words of a true cancer veteran…

What is particularly interesting is that I can feel the drug working. I can feel activity in my chest. Actually, my SVC symptoms cleared up after my first infusion, so I knew something was going on in there.

My latest PET scan showed very, very little activity. This means the SGN is doing its job. The doc won’t say the word ‘remission’ but the results are good enough that we can move on to the next step – allogenic stem cell transplant. I have another PET scan in mid-August and if that is clear, we can go full steam ahead.

Thank you, SGN. I look forward to the day when you are available for all the Hodgkin’s patients out there.

Stem cell transplant. As you may remember, this is where things get interesting again.

Firstly, the great news is that my brother is a match for my transplant. There was a lot of worry about having to find an unrelated donor. And the process for getting him tested and finding out the results have dragged on a little longer than expected. But in the end, it is the best result possible – 100% related donor.

In my brother’s own words: He’s finally useful for something other than raising people’s auto insurance.

Also, it looks like I’m going to be able to have my transplant at UCLA. Their policy is usually not to allow someone to have multiple stem cell transplants in the same year. But they talked through my situation and agreed that it will be fine. I think this proves that a person should always fight for their health care – even when one doctor says no, someone else could say yes. And a caring doctor will listen to your concerns and consider your needs. There is no ‘one way’ of doing things when it comes to cancer treatment. Even when it is Hodgkin’s and the plan is mostly predetermined.

We can’t make definite plans until after my next PET scan. My brother has to fly here from Berlin. We have to time everything just so. I’m confident things will fall into place in its own time.

I was also told that the chemo before my transplant won’t be as debilitating as last year. With an autologous transplant, they gave me enough chemo to completely destroy my immune system. This time, they only need to give me enough chemo to weaken my immune system enough so as to allow my brother’s stem cells to take hold. Also, I’m told that giving me that level of chemo could be devastating – it could make my immune system so weak that I might not recover. And that’s not what we’re going for.

However, the potential complications of an allogenic transplant are greater than autologous transplant. Although I may not be as knocked down from the chemo, I’ll still have to deal with the host v. graft disease. I’ll get more into that at a later date.

So, I’m headed in the right direction with this 3rd round of treatment. It has been mostly good news since I started the SGN-35 treatments. I’m happy. But not too happy – there is still a lot of difficult work ahead.

Allow me to briefly acknowledge that I don’t give out updates on my blog as much as I used to.

Since SGN hasn’t been as rough as my past chemotherapy, I’ve been able to focus more on being productive with the rest of my life. I took a 4 week summer class at Pepperdine. Jen and I are making some changes in our lives. I traveled to a seminar in Monterey Bay. And, as I write this, I’m on a health retreat north of Vancouver Canada.

As I mentioned before, writing this blog can be very difficult at times. I know it provides valuable information and insight to other Hodgkin’s patients. But at the same time, it can be quite an emotional drain for me to review my procedures and share my thoughts.

As I move forward, I can’t promise I’ll write more or less. But know that I’m in a good place.

Progress progress progress.

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.

New developments for cancer patients

A lot of interesting new research and support for cancer patients has come across my computer recently. It is a good reminder that there is always something new around the corner – some new development, new drug, new reason for hope. I posted some of the links the other day. Here’s some more:

  • New cancer app to link patients to doctors, doctors to doctors, doctors to research and so on. This could be a big help when trying to find your way through all the treatments, research, clinical trials and information that gets thrown around. Right now it is only for melanoma patients…but, if it is effective, I see no reason why this won’t be expanded for all types of cancer. Melanoma app
  • Interview with Doctor Anas Younes about 2 new drugs that are in clinical trials for Hodgkin’s patients. Exciting news about SGN-35 and LBH-589. Interview with Dr. Anas Younes
  • If you are a Lymphoma patient, you should be following Dr. Anas Younes anyway. He is a valuable resource and a great doctor. We contacted him directly with some questions and he got back to us right away – pretty amazing for such a busy man. https://twitter.com/#!/dranasyounes

As for me, I’m grooving along. Started grad school last week. Already lots of reading and assignments to do. I’m looking forward to being more involved this semester and squeezing as much out of the experience as I can.

My counts are still low, but not critical. I still get tired in the middle of the day. There’s still a lot for Jen and I to celebrate and I’m enjoying going out more and spending more time with friends. As always, life is a series of ups-and-downs and a lot of people I know are going through some pretty difficult times. I’m glad I have the energy to walk along beside them instead of being cooped up with my cancer.

Be well.