If you’re reading this, you’re interested in learning more about Hodgkin’s Disease (Hodgkin lymphoma). This blog exists to provide information on what you can expect to EXPERIENCE with Hodgkin’s Disease, especially with ABVD chemotherapy. It is not a substitute for medical advice.

Your webmaster was diagnosed with bulky, advanced stage HD (stage III/IV-A) in February 2007 at the age of 26.   After finishing 8 cycles worth of ABVD, she has currently been in remission for two years.

This blog provides you with mainly an introduction to what you can expect from ABVD chemotherapy. You can learn lots about what chemotherapy actually is and how it is supposed to work from your oncologist and nurses, but the only place you can learn what it’s REALLY like to experience things like cancer, chemo, etc. is from someone who has actually been through it themselves.  That’s why I’ve decided to leave these pages here — as a reference that may help someone in the future.

With that here are the articles on this site:

• A Brief History of Dr. Hodgkin and His Disease
• ABVD for Newbies
• Mediports

Please feel free to leave comments (comments are held for moderation just to avoid spam).  The webmaster checks in from time to time to update the info and to approve comments.

These are some links to information about Hodgkin’s Disease that I think you will find useful.

Hodgkin’s Lymphoma:  Cancer.gov - Everything you need to know about Hodgkin’s.  Stats, treatment info, clinical trials, research, etc.

E-Medicine.com: Hodgkin’s Disease – Great information on Hodgkin’s, though written more for medical professionals.

Hodgkin’s Lymphoma: Biology and Treatment Strategies for Primary, Refractory, and Relapsed Disease – Article for doctors published in the 2003 journal Hematology.

Hodgkin’s Lymphoma: Basing the Treatment on the Evidence - Article for doctors published in the 2001 journal Hematology.

Cancer and Exercise – “Exercise is now being recognized as an important component of the fight against cancer. There is evidence that exercise can be of benefit in three ways to manage cancer and its symptoms.”

Anatomy of the Human Body – Useful for when you’re trying to understand your radiology reports.  You may also like:

• Mediastinal Lymph Node Stations
• CT Depictions of Regional Nodes (lung cancer specific, but the anatomy is the same)

Physical and psychosocial responses to exercise in cancer patients: A two year follow-up survey with prostrate, leukemia, and general carinoma – Excellent small study on exercise in cancer patients.

Hodgkin’s Disease Facts and Figures – Just what it says.  Also explains the difference between HD and N-HL.

Getting ABVD is a non-event for many people.  My problems came later in treatment when I started associating the cancer center with feeling sick and developed anticipatory nausea.

But I know you’re wondering … how do you feel after ABVD?

One thing you MUST keep in mind is that EVERYONE reacts a little bit differently to even the exact same chemo. So my experience is not going to be your exact experience and visa versa.

It’s very difficult to describe exactly how you feel on chemo.  I’m a lawyer, so I write descriptions and explanations of things for a living, and even I have trouble articulating what chemo was like.  It was sort of like a cross between having a stomach flu and just being completely out of it, like you didn’t even really care you were alive.

My experience was this:  I was treated on a Friday morning.  I would start feeling uneasy Thursday night.  I started to dread chemo more and more by the end.

Friday morning I would start feeling sick AT the treatment center before anything even happened.  I think this was all in my head.  I would get treated and feel almost immediately terrible.  Nausea mainly.  All I wanted to do was lay down.  It made no sense to sit up and try and distract myself.  The best thing to do was go straight to bed and lay there and try to sleep.  I usually wasn’t nauseated so long as I was laying down.

I never actually threw up, but I often felt nauseated for a few days and I didn’t want to eat.  I would eat nothing at all on Fridays, then pick at my dinner Saturday and Sunday. By Monday, I would feel well enough to eat a normal amount and maybe go for a run.  By Wednesday I would be at 95% and would be pretty normal … until the cycle would begin again.

One big tip that I really wished someone had told me before my first ABVD:  Anti-nausea drugs work best before you are nauseated.  Once you feel sick, your fighting an uphill battle.  Take your drugs around the clock for the first few days even if you feel fine.

Honestly, most of the time during ABVD, I felt good.  Really, I had about twelve good days, and three really bad days.  It seems from talking to other Hodge patients that most people don’t feel immediately sick like I did, but rather the side effects hit later.  I will say that my first treatment basically established the pattern, and the rest were very similar.  I didn’t find I felt “worse” as treatment went on, but I think that may be because I was sick to begin with.

Anyway, I hope that gives you an overview of what to expect from ABVD and hopefully allays some of your fears.

ABVD is almost always given as an out-patient regimen.  (Speaking from experience, it could also be done in a hospital if your oncologist is worried about your basketball sized spleen breaking up too quickly and overwhelming your kidneys, though … We’ll just assume you’re not nearly as bad off as I was at diagnosis!)  So you probably will be treated at an out patient cancer center.  If you can go check out the treatment room ahead of time, go for it.  My cancer center’s treatment room had chairs with TVs attached.  You can also bring your ipod, laptop, whatever entertains you.  You probably will be in a room with other people, so of course you do want to be polite (i.e. bring headphones if you want to listen to music).

Should you bring someone with you?  Up to you.  I think it’s helpful to have someone pick you up and drop you off since the drugs may hit you quickly, but other than that, it’s up to you.  If it makes you feel better, bring a friend or family member.

So what happens on chemo day?  In a nutshell this was a typical “chemo day” for me.

Go see my oncologist.

I didn’t always see him before treatment for an office visit, but every other treatment or so I had a short office visit with my doc.  Usually this was a feel-the-nodes session and a chance to whine incessantly about the side effect of the week to the architect of my misery.   If I recall, this was also my chance to beg the boss for no more Dacarbazine.  If your oncologist is anything like mine, good luck with that last one, by the way.  =)

Time for some blood.  Accessing the port or starting an IV.

Throughly disappointed that I would indeed be getting Dacarbazine, again, I would then go get my port accessed and hooked up.  Access is a nice word for “stab” — if you want to know more about ports check out my port post over in the side bar.    If you decided to go without a port, they will start a peripheral line in your arm, hand, wherever they can located a good vein. They will also draw some blood (through the IV or port) and check your counts. This is the threshold that determines whether you can get chemo; too low of counts, and they can’t treat you.  Low counts aren’t real likely during your very first chemo, but they could be later on.  They will look at:

• Your RBCs, to check for anemia, including your hemoglobin. If you are low, your doctor MAY withhold treatment, mine never did and I was extremely anemic in the beginning.
• Your platelets.  These make your blood clot. I had some trouble with low platelets from time to time if I recall, but my oncologist always went forward with treatment anyway.
• Your WBCs. They will especially focus most not on the total but on something called your ANC. What is an ANC?  You don’t really need to know, but if you’re curious ANC refers to the percentage of neutrophils (white blood cells that fight infection) and cells that will become neutrophils multiplied by the white blood count (WBC). It breaks down as follows:
  • ANC below 2000 is considered to be neutropenia
  • ANC between 1000-1500 fairly low risk of infection. Chemotherapy will usually be given in this range, but not below it.
  • ANC between 500-1000 – moderate risk of infection
  • ANC below 500 – severe neutropenia – high risk of infection
• They will also do a basic check of your electrolytes and kidney and liver functions before they decide to go forward with treatment.  You know, just to make sure there’s nothing wrong.

Getting your counts depends on the speed of the lab; in general, I would have mine in fifteen or twenty minutes.

(If your counts are too low, you’ll likely just go home and your oncologist will either wait for your counts to come up or he/she will start treating you with WBC boosters such as Neulasta. I never had a chemo delayed.  My oncologist gave Neulasta whether I needed it or not because he wanted to stay on the plan.)

They get your weight, bp, etc. and the oncologist writes the order, and the pharmacy makes it up.

They will do a basic vital check — blood pressure, pulse, and weight. There is a formula based on weight and height used to calculate your chemo dosage exactly — my oncologist weighed me each time and calculated the dose from there. The pharmacy then custom mixes your chemotherapy drugs. It used to take about 30 to 45 minutes to fill the order.

The Pre-Meds and Fluids.

Once your “premeds” are ready, you can go get hooked up to an IV pole.  IV poles exist to annoy you.  I know; I dragged one around for three days for my first ABVD session because I was treated in the hospital and my oncologist was worried about tumor lysis so I had to get round the clock fluids.  Luckily you’ll only be hooked up for about three hours.

Because ABVD commonly causes nausea and vomiting, most doctors will pretreat you for nausea and vomiting.  I got Zofran, Aloxi, and Decadron as my pre-chemo anti-nausea drugs.  Other drugs can include Antzamet, Kytril, and Emend.  I used to take Emend (a pill), then get IV Zofran and Aloxi, then start taking Ativan, Compazine, Kytril …. I had a huge arsenal of literally thousands of dollars worth of anti-nausea drugs at my disposal.

Just as an aside, I want to point out that because I suffer from GERD (acid reflux) that I had a lot more nausea than most people.  Chances are you will do way better than me as far as nausea goes.

It usually takes about thirty minutes to get these pre-meds.  They shouldn’t make you feel anything.  Mine never had any taste or anything.

Time for the actual chemo.  Leading off the Red Devil – Adriamycin

As I mentioned before, ABVD stands for the name of four drugs — Adriamycin, Bleomycin, Vinblastine, and Dacarbazine.  They are almost always given in that order.

The red drug, Adriamycin, is usually given first. It comes out in a large syringe (I used to call it a turkey baster). To prevent mouth sores, you can suck on ice or Popsicles while getting Adriamycin, or at least you could at my chemo center. The nurse will “push” Adriamycin — that means slowly inject it into your IV line. Warning that it is REALLY RED and it will usually turn your urine RED too, so don’t freak out when / if it happens.

Of the drugs, this one supposedly hits the Hodge the hardest. A lot of cancers get treated with Adriamycin, and it’s sometimes called “The Red Devil.”  Since so many cancers used Adriamycin, a lot is known about it.  Adriamycin will probably cause your hair loss and may affect your heart muscle, so your doc will monitor for those things.  These aren’t immediate effects, though.

Adriamycin has a taste, and if you happen to be one of the people who can taste it, you’ll quickly note that it’s a bad taste, so you may want to suck on hard candy in addition to the popsicle.  I used to gag over Adriamycin; I found sour flavored candies were the most helpful.  Of course, now I also hate sour-flavored candies because I associate them with chemo.  Oh well.

That’s another good point I want to bring up — do NOT eat your favorite foods on or around chemo day because you can start associating them with chemo.  Stick to bland stuff or stuff you won’t care if you never eat again.

Next up … Bleomycin

Bleomycin — which I always shorten to just “Bleo” — also comes out in a turkey baster (or syringe if you prefer to call it that), but the baster is much smaller than the Adriamycin. Bleo is pushed in slowly the same way as the Adriamycin.

Bleo is a clear, utterly harmless looking drug that’s known for causing pulmonary effects — again not immediately but down the line.  There really isn’t anything worth noting about it, other than the first time you get chemo, they will give you a test dose and wait to see if you have an allergic reaction.  I didn’t have any reaction.  In fact, reactions are EXTREMELY rare, so this is a better safe than sorry safeguard.  I wouldn’t freak out about it. That test dose does add some time to your first chemo that you won’t have at the later sessions, however.

Some people get fevers from Bleo; if this is you, you can try tylenol.  I didn’t have that problem.  Bleo just messed up my lungs … but that’s another story for another day.

Vinblastine

Vinblastine is basically identical in appearance and in method of administration to Bleo, except they don’t do a test dose and I think I recall the syringe was a touch smaller for the Vinblastine dose. Sometimes my chemo nurses did not push Vinblastine slowly, but instead gave it rapidly through the IV. It didn’t seem to matter either way.

Vinblastine doesn’t appear to have any taste and is clear.  Vinblastine’s main side effect is nerve damage.  This would show up somewhere down the line and wouldn’t be immediately apparent.

The Dastardly Dacarbazine

I absolutely hated Dacarbazine.  I decided it was the drug that made me the most miserable.  This is the last drug of the four and it’s given differently than the others.  The first three are “pushes” — Dacarbazine is a drip.

Dacarbazine is given at a specific rate of speed, over approximately an hour or so (assuming you have a port; if you don’t Dacarbazine may take a long time to get). The Dastardly D drug comes out in a brown bag usually to protect it from sunlight. This is the one that apparently is most likely to make you sick to your stomach.  Dacarbazine causes nausea and vomiting in about 90%+ of people treated with it who don’t recieve anti-emetics.  The use of anti-emetic drugs like I listed above makes Dacarbazine very tolerable and many Hodge patients don’t have ANY problems with nausea and vomiting.  Me, not so much.

That’s it.  You’re done!

Once you’ve gotten all your drugs, they will flush your port (if you have one), unhook you, and you’re usually good to go.

And that is pretty much all there is to it to ABVD chemo. It takes about 3 hours from start to finish.

Now let’s look at how you might feel after chemo.

ABVD for Newbies Chapter One: Scared witless?  We all are.

OK.  So you have Hodgkin’s Disease and you have to get chemotherapy.  I’m very sorry and I say that with the deepest sincerity.  I have been through what you are about to go through and frankly I wouldn’t wish it on my very worst enemy in the entire world.

That said, what you’re about to go through is something literally thousands of people have been through.  We made it through ABVD and so will you!  THIS IS DOABLE.  THIS IS NOT THE END OF THE WORLD.  YOU CAN, AND WILL, BE OK! There is absolutely no reason to think otherwise.

First, let’s go over a little bit about what ABVD is.  You can get much more information from your oncologist, but a little knowledge can help you discuss things a little more intelligently with your doctors and nurses and ask better questions.

ABVD is a four drug regimen.  The drugs are Adriamycin, Bleomycin, Vinblastine, and Dacarbazine.  The drugs are usually given in that order.  An ABVD cycle last 28 days and consists of two treatments given two weeks apart.  Then the cycle starts anew.  Therefore, if you are slated for six cycles of ABVD, you will be treated twelve times over about six months, with treatment say every other Friday.

Each of the four drugs work against the Hodge a little bit differently, and each has it’s own side effects.  They are given in very precise doses and at precise intervals.  They are designed to work in combination with each other.  ABVD is an old regimen — around since the 70s — and your medical team know exactly how much of each drug you need to get to hopefully cure you.  This isn’t an experimental treatment.

OK, now you know a little bit about ABVD, let’s now address fear.  Every single one of us who has been through this has felt the same dread as you.  We all may try and cope differently — for example I joked more than usual — but no one wants to go through chemotherapy.  It’s a big unknown and it’s something depicted in popular media, film, and literature as terrifying.  When someone said chemo to me, I would picture in my mind this image of a completely hairless, lifeless, wasted away person with their head in a toilet throwing up non-stop.

Here is the good news.  That’s not what ABVD is like!  CHOP-R (Non-Hodgkin’s lymphoma’s chemotherapy regimen) also isn’t like that.  (I know because my dad had N-HL two years before I was diagnosed with Hodgkin’s Disease.)  ABVD is basically a moderate chemotherapy course.  The worst thing about ABVD is how long a therapy course it is.

What can you expect from ABVD?

Hair loss. You probably will lose your hair. (Probably around the second or third cycle.) Sorry. =( This is one side effect they haven’t made much progress on. HOWEVER, not everyone loses their hair, so you may want to wait and see before you make any drastic decisions. My hair thinned considerably, but I still had enough at the end to tie back into a ponytail and I did the maximum amount of ABVD at eight cycles.

Some nausea. You will probably be nauseated, at least sometimes and at least a little.  People have differing amounts, however. I seemed to get more than my fair share of nausea, but I never actually threw up. There are MANY excellent anti-nausea medications out there — they may not prevent every twinge, but if used properly you should DEFINITELY not be spending your days throwing up.

Fatigue. You will be tired. However, although ABVD causes fatigue, MANY people are able to work at least part-time through it, some even full-time. That should give you an idea about the fatigue. I ran and worked part-time and traveled through my 8-month course.

Feeling bleh. For want of a better term, you are going to feel bleh sometimes.

All right, so that’s a little introduction to ABVD.  I hope you aren’t quite so scared now.  Part two of this article explains what to expect on chemo day.

This post is mainly written for people newly diagnosed with Hodgkin’s Disease who will be undergoing chemotherapy, specifically ABVD chemotherapy.  If you want to know more about what ABVD is, you can ask your oncologist or nurses.  If you want to know more about what actually happens when you get chemo and how you might feel with ABVD from the perspective of the patient, then keep reading.

If you’re like me, you probably don’t know much at all about how chemotherapy is given or what to expect.  I did have an advantage in my dad had a very similar chemo regimen for Non-Hodgkin lymphoma called CHOP-R.  But for most people, this is going to be your first encounter with chemo.  And you may have a nightmare view of what chemo is going to be.  I hope this post helps alleviate some of your fears by providing you information. I’ve divided this post into three “chapters.”

Chapter One: Scared witless?  So are we all.

Chapter Two: How ABVD is actually given.

Chapter Three:  How am I going to feel after ABVD.

One thing to always remember — I’m just a patient.  If you have medical questions, you need to ask your medical team.

Everything you need to know about ……….. Ports.  From the patient’s perspective.  If you keep reading here, you’re going to be subjected to my own unique brand of gallows humor.  Just a warning.

So you have cancer and your doc starts talking about this thing called a port.  No, unfortunately I’m not talking about ship ports.   I’m talking about a mediport for chemotherapy.

People keep asking me questions about my port — mainly people starting or going through chemotherapy. People seem to be more curious about the port than anything else (I even find lots of people searching about them arrive here through random searches of Google or Yahoo). So … in the interest of hopefully cutting down on how many emails I get about ports … Here’s what I can tell you. As always, your mileage may vary.

What is a port?

A port is short for “mediport.” A port is a small device that is implanted under your skin so that medicine may be delivered directly into your blood system. Blood can also be drawn out of the port to be sampled. The port is sometimes also called a venous access catheter.

Why would I want or need a port?

There are a few reasons you might want or need a port.

1) Certain chemotherapy drugs (including those used to treat Hodgkin’s Disease) can cause serious irritation to the veins when they are infused. When the drug is injected through the port rather than into another vein (such as one in your arm), the drug doesn’t directly enter the skin and the likelihood to cause irritation is drastically reduced.

2) Frequent use of the peripheral veins (i.e. those in your arms and hands) can cause scarring and make the veins difficult or impossible to access. The port “saves” a lot of wear and tear on these veins. Most blood draws and treatments can be given through the port.

3) If you are getting frequent treatment or need frequent blood draws, a port (as opposed to another device) allows you to swim, shower, and basically maintain regular activities.

How does it work?

The port is placed completely under the skin, usually on the chest below the collarbones, but other locations can be used as well if desired or necessary. The port forms a small bump under the skin. This raised part is called the port’s reservoir. The reservoir has a plastic membrane or bubble of self-sealing rubber in it called a septum. The septum leads directly into a large vein or artery.

A nurse uses a special needle called a Huber (or “butterfly”) needle to “access” the port. The nurse places the Huber needle through the reservoir and into the septum. This allows access to the large vein. The nurse can then either draw blood, inject medication, or simply leave the needle in place for future use.

What does it look like?

I took some pictures of my port to show people what it looks like.  I’ve found most people are really curious and have never seen a port before.  I had no clue what one looked like and had trouble finding any pictures — so hopefully this helps “explain” what a port looks like and gives you more of an idea of what to expect.  (If you’re like me, you like to know EXACTLY what you’re in for.)

First, this is what a port looks like when it’s actually hooked up and accessed.  The dressing is placed over the top of it to keep it clean and dry.  The clear tube coming out of the port is what gets hooked up to the IV machine or to the syringe for chemo.  I took this picture on one of the few days I actually had my port left accessed at home.

This is what the port looks like all hooked up for chemo or any other infusion. A port can be used not only to deliver chemo, but for routine blood draws and even to just give you nice drugs like fluids. When it is not hooked up, it looks like a little bump underneath the skin about the size of a nickel with a scar above it. That’s it.  (When the port is accessed, you can’t get it wet.  But sometimes I would have to see my oncologist the day before chemo and he’d draw labs … to avoid the second stick the next morning when I got chemo, I’d sometimes leave the port accessed over night.)

What does a port itself actually look like?

A port looks something like the image to the left.  This is the reservoir part.  Ports come in different sizes.  The standard adult size port is about the size of a quarter.  I have a pediatric port because my mediastinal lymphadenopathy was so large that a standard size port wouldn’t fit.  My port is about the size of a dime.

There is a catheter (the long tube like extension attached to the reservoir) attached to the port that leads from the port itself into a large vein or artery.

How long can you keep a port?

A port can be kept indefinitely.  Reasons to remove a port include problems with it (such as infection) or simply because it isn’t needed anymore.

When not used regularly, a port needs to be occasionally flushed with heparin to keep it functioning properly.

How did they put it in?

My port was placed using just local anesthetic.  It was done in a surgery room in the radiology department.  The surgeon made two incisions — one on the right side of my chest below the collar bone and a second incision in my neck on the same side.  The chest incision was the “pocket” where the port itself was placed.  The second smaller incision was for tunneling the catheter.

I think the standard procedure is to actually put the port on the left.  Mine went on the right side because I had so many masses in my chest.

Did it hurt to put it in?

Not really.  It was more unpleasant than painful.  I had the option for more anesthesia than just local, but to be honest for me the risk of anesthesia would outweigh the mild unpleasantness factor.

The painful part was injecting the lidocaine.  That felt like getting stung over and over by a bee.  Pleasant?  No.  Painful?  A little, but totally doable.

When the surgeon was actually working on the port, it felt like he was tugging at me.  Not painful, just strange.

Does accessing the port hurt?

Accessing the port still requires a needle stick.  It hurts probably just as much as getting an IV in the arm, but the advantage of the port for me is there was only one time that required two sticks.  I have lost count of how many times I’ve needed to be stuck more than once for an IV or blood draw.

What does the scar look like?

See above.  Although there was also an incision on my neck, I don’t seem to have any scar there.  That incision was quite small.

Does having a port effect your daily life?

I run with my port, I shower … I usually forget it’s there except for when a seat belt occasionally rubs up against it or something.  I like the port because my veins aren’t very good and the port saves a lot of needle sticks.

Anyway, I hope this helps demystify the port!

There seems to be something a bit ironic about a student of history being diagnosed with a type of cancer with as long and as interesting a history as Hodgkin’s Disease. Being a history buff afflicted with this particular malignancy, I thought it might be interesting to give … drum roll … a brief history of both Dr. Hodgkin and his horrible disease.

Dr. Thomas Hodgkin

Hodgkin’s Disease is one of the best known medical eponyms. The fellow who’s name got attached to this relatively rare ((The incidence of Hodgkin’s Disease is about 3 cases per 100,000 people per year, and it accounts for less than 1 percent of all cases of cancer in the United States. The American Cancer Society states: “The American Cancer Society estimates that in 2007 there will be about 8,190 new cases of Hodgkin disease in this country. And about 1,070 people will die of the disease. Because of better treatment, death rates have fallen by more than 60% since the early 1970s.”)) cancer especially known for attacking younger people ((Hodgkin’s has a biomodal distribution; it is most often seen in people aged 15 to 34 or over the age of 60. In young adults, it is the most common kind of cancer.)) was named Thomas Hodgkin. Hodgkin was born in to a Quaker family in Middlesex, England on August 17, 1798. In 1819, he entered medical school at St. Thomas’s and Guy’s Medical School (affiliated today with King’s College in London). In 1823, he earned his M.D. Two years later, Dr. Hodgkin was appointed lecturer in morbid anatomy and curator of the Pathology Museum at Guy’s Hospital Medical School.

Physically, Hodgkin was dark haired, with a slight and wiry build. He had a hot temper, but was greatly appreciated as a lecturer. Hodgkin’s passion seems to have been pathology. In 1829, Hodgkin published a work that became a classic in pathology, The Morbid Anatomy of Serous and Mucous Membranes. This work focused on unexpected intra-thoracic and intra-abdominal tumors and how cancer spread.

In 1832, Dr. Hodgkin described the disease that now bears his name in a paper entitled On Some Morbid Appearances of the Absorbent Glands and Spleen. The paper was published in the journal of the Medical and Chirurgical Society in London. The disease would be rediscovered in 1865 — right as the Civil War ended — by Dr. Samuel Wilks who recognized Hodgkin’s work and named the disease after him in a paper entitled Cases of enlargement of the lymphatic glands and spleen, (or, Hodgkin’s disease) with remarks.

Hodgkin was one of the early advocates of preventive medicine, publishing On the Means of Promoting and Preserving Health in 1841.

Although the most brilliant pathologist of his day, Hodgkin was an abject failure in business. After staying up all night caring for a very rich patient, Hodgkin received a blank check for his work. He filled in the blank with 10 pounds, then added insult to injury by saying that the patient didn’t seem to be able to afford more. Many of his friends were reluctant to ask him to consult on their cases because he would refuse to charge them.

Hodgkin was a social progressive. He opposed slavery, advocated for reforms in medical education, and founded the the British and Foreign Aborigines Protection Society. His liberal views along with his hot temper made him enemies in the medical profession.

Dr. Hodgkin died of a terrible illness sadly familiar to many Civil War soldiers — dysentery — on April 5, 1866 in Jaffa, Palestine. His grave reads: “Here rests the body of Thomas Hodgkin M.D. of Bedford Square, London. A man distinguished alike for scientific attainments, medical skills and self-sacrificing philanthropy.”

Hodgkin’s Disease – The Early Years

Dr. Hodgkin was the first to note that Hodgkin’s Disease seemed to form in the intra-thoracic region and would spread through contiguous lymph node chains. He also noted that involvement of the spleen seemed a symptom of advanced disease.

Dr. Hodgkin also recognized that the “father of microscopical anatomy,” Marcelle Malpighi published the first actual recorded description of Hodgkin’s disease in his paper De viscerum structuru exercitatio anatomica in the year 1666. Hodgkin’s Disease was not the first cancer discovered, ((Cancer is an ancient disease. Bone remains of mummies have revealed growths suggestive of bone cancer. The Edwin Smith Papyrus found in Egypt that dates back to 1600 BC actually describes 8 cases of tumors or ulcers of the breast that were treated by cauterization, with a tool called “the fire drill.” The writing explains that there was, “no treatment.”)) but it was among the first and one of the first to be accurately described.

Hodgkin only examined his disease grossly; he did not undertake to use the primitive microscopes of the day to explore the tissue further. As previously mentioned, a year before his death, Dr. Wilks assigned Hodgkin’s name to the disease. Hodgkin’s Disease proved to be interesting because it was difficult to classify — was it an infection? a cancer? an inflammatory process? The disease additionally attracted much attention and infamy due to it’s frequency in young adults.

Several pathologists who followed Hodgkin and Wilks did examine biopsies of Hodgkin’s Disease under the microscope, but it was Dorthy Reed (1874-1964), a fellow at Johns Hopkins, who first classified the unusual giant cells unique to Hodgkin’s Disease. Dr. Reed failed to recognize that they represented a neoplasm, however, thinking they were inflammatory. The unique giant cells that make up Hodgkin’s Disease are today known as Reed-Sternberg cells (Dr. Carl Sternberg (1872-1935) had also done work describing them independently in Germany in 1898).

Pathologists were eventually able to tie the giant Reed-Sternberg cells ((R-S cells are the major thing that differentiate Hodgkin’s Disease from non-Hodgkin’s Lymphoma. The R-S cell is very large and often has more than one large nuclei.)) to the malignant process. Hodgkin’s Disease is a cancer, ((Hippocrates used the terms carcinos and carcinoma to describe non-ulcer forming and ulcer-forming tumors. He used the word that referred to a crab because crab the disease often presented with finger-like spreading projections from a cancer called to mind the shape of a crab.)) sometimes called Hodgkin’s Lymphoma. ((A lymphoma is a cancer of the lymphatic system, a set of interconnected organs and tissues that helps the body fight diseases and infections. There are two major types, the much more common Non-Hodgkin’s Lymphomas and Hodgkin’s Disease. Connected along the thin network of vessels of the lymph system are groups of small, bean shaped and sized organs called lymph nodes. Lymph nodes are found in the neck, chest, armpits, abdomen, and groin. The lymphatic system also includes the tonsils, thymus, spleen, and bone marrow.))

Reed-Sternberg cells are interesting because they only make up 1 to 2% of a Hodgkin’s Disease tumor. Hodgkin’s Disease is the only malignancy where the size of the masses aren’t a result of the number of cancerous cells. ((Most of the Hodgkin’s Disease mass consists of benign inflammatory cells including small T lymphocytes, histiocytes, plasma cells, eosinophils, and neutrophils. The inflammation is produced by cytokines which are in turn produced by the tumor cells.)) (This is one reason why there is so much inflammation with Hodgkin’s Disease and often scar tissue).

In 1925, Hodgkin’s Disease, Non-Hodgkin’s Lymphoma, and the leukemias were finally differentiated officially as different diseases.

Hodgkin’s Disease: The First Curable Cancer

Although early pathologists did not recognize that Hodgkin’s Disease was a malignancy, it’s ability to kill was well known. Ninety percent of people with Hodgkin’s Disease would die within three years time; almost all would die within five years.

Through the early 20th century, doctors experimented with using radiation to try and control Hodgkin’s Disease. They had limited success. They began to then experiment with nitrogen mustard. Now my military readers are probably asking mustard? Isn’t that the stuff that was so terrible and killed so many in WWI? Yes. Ironically, the development of the nitrogen mustard drug used in Hodgkin’s disease stemmed from the use of mustard compounds during World War I and from a terrible explosion during World War II in Bari, Italy that exposed servicemen to toxic effects. The Bari incident showed that nitrogen mustard could cause suppression of the bone marrow and of the lymphatic system. By the mid-1940s, doctors were beginning to control Hodgkin’s Disease and shrink the tumors.

The big breakthrough came in the middle 1960s. By 1964, doctors had come up with a combination chemotherapy regimen that utilized the mustard known as MOPP. MOPP consists of cyclophosphamide, vincristine, methotrexate, and prednisone.

The current staging system was also set up by the mid-1960s. The Ann Arbor Staging for Lymphomas also applies to Hodgkin’s Disease. Stage is closely associated with prognosis. The stages for lymphoma are:

• Stage I indicates that the cancer is located in a single region, usually one lymph node and the surrounding area. Stage I often will not have outward symptoms.
• Stage II indicates that the cancer is located in two separate regions, an affected lymph node or organ within the lymphatic system and a second affected area, and that both affected areas are confined to one side of the diaphragm – that is, both are above the diaphragm, or both are below the diaphragm.
• Stage III indicates that the cancer has spread to both sides of the diaphragm, including one organ or area near the lymph nodes or the spleen.
• Stage IV indicates diffuse or disseminated involvement of one or more extralymphatic organs, including any involvement of the liver, bone marrow, or nodular involvement of the lungs.

To this letters are often appended:

• A or B: the absence of constitutional (B-type) symptoms is denoted by adding an “A” to the stage; the presence is denoted by adding a “B” to the stage. The B symptoms include night sweats, fevers, and weight loss of 10% of more. Many symptoms associated with Hodgkin’s Disease (itching, pain on drinking alcohol) are not official B-symptoms.
• E: is used if the disease is “extranodal” or has spread from lymph nodes to adjacent tissue.
• X: is used if the largest deposit is >10 cm large (“bulky disease”), or whether the mediastinum is wider than 1/3 of the chest on x-ray.
• S: is used if the disease has spread to the spleen.

(So if you assigned your author all the different letters that applied to her case, she would have Stage III-AEXS Hodgkin’s Disease.)

By the way there are also four known sub-types of Classical Hodgkin’s Disease:

• lymphocyte predominance (approximately 5% of cases)
• nodular sclerosis (approximately 70%)
• mixed cellularity (approximately 20%)
• lymphocyte depletion (5%)

(Your author had the NS sub-type.)

By 1967, the results from MOPP were coming in and they were astounding: an 81% complete remission rate. In 1968, Adriamycin ((Adriamycin is the red drug. It is used for many different kinds of cancers. It’s generic name is doxorubicin. Adriamycin is in the class of chemo drugs known as Anthracyclines.)) became available for the first-time and in 1972 Dacarbazine ((Dacarbazine is also known by it’s brand name, DTIC. Dacarbazine is an alkylating antineoplastic agent. It is used mainly now for Hodgkin’s Disease and for certain kinds of melanoma.)) was approved for use. Because MOPP caused severe side effects (including sterility and severe suppression of the bone marrow leading to secondary leukemias), in 1972-73 a group from Italy led by Bonadonna came up with the current “gold standard” for Hodgkin’s Disease: ABVD Chemotherapy. ABVD combined a vinca-alkaloid known as Vinblastine ((Vinblastine is a mitotic inhibitor. It derives from the perwinkle plant.)) (similar to Vincristine in MOPP), an anti-tumor antibiotic called Bleomycin, and Adriamycin, and Dacarbazine. In head to head trials, ABVD proved not only less toxic, but also provided superior rates of cure.

The last major step in treating Hodgkin’s Disease came in 1992 when a German group came up with a new regimen for highest risk patients known as BEACOPP. Along with the Stanford V regimen (a combination chemotherapy and radiation regimen), these two treatments are now sometimes used in place of ABVD in advanced disease.

With modern chemotherapy, sometimes combined with radiation to areas of disease, about 80% of patients with Hodgkin’s Disease can today be cured.

As you would expect, Hodgkin’s Disease is still an evolving field, especially in terms of treating patients who have relapsed disease. Much of the work currently involves effective treatments for Hodgkin’s Disease that reoccurs despite first-line therapies. Also, there has been focus on trying to predict which patients are most likely to relapse. The use of radiation remains an issue as does attempting to lessen the toxicities from chemotherapy.

A Few Famous Hodgkin’s Disease Survivors You’ve Probably heard of

• Paul Allen
• Mario Lemieux
• Arlen Specter
• and a host of wonderful people you’ve never heard of, but are just as important, and just as valuable

So there you have it — a brief history of Dr. Hodgkin and his disease. ((The World Health Organization in 2001 tried to officially name Hodgkin’s Disease, Hodgkin’s Lymphoma. Personally, I think Hodgkin’s Disease sounds better and my doc uses the term “Disease”, so I am going to keep referring to it as Hodgkin’s Disease.))