What it’s ACTUALLY like to GET Chemotherapy

I occasionally hear from someone newly diagnosed with Hodgkin’s Disease who is about to start ABVD chemotherapy. ¹ Unfortunately, I heard from THREE people yesterday who are getting ready to start — apparently my port post was popular and apparently Dr. Hodgkin’s horrible disease is still alive and well. Grrrrrr.

If you’re like me, you probably don’t know much at all about how chemotherapy is given or what to expect.  Or, perhaps you have this nightmarish view of what chemotherapy is going to be like.  So let’s start there.  Remember, I’m just like you are — a normal person faced with Hodgkin’s Disease.  I’ve got no reason to lie to you or sugar coat things and I’m promising you — I’m being honest about MY experience.  One thing you MUST keep in mind, however, is that EVERYONE reacts a little bit differently to even the exact same chemo.  So my experience is not going to be your experience and visa versa.

Also, I can’t guarantee of course this is exactly what will happen to you.  Each treatment center or hospital² is a little bit different, so your mileage may vary.

OK, that said, what can I expect when I go get ABVD chemotherapy?

Let’s start with a few preliminary considerations.

1.  It’s not going to be as bad as you think it is going to be.

You’ve seen those scenes in movies or TV shows where someone gets chemo and all sorts of terrible things happen — they waste away like a prisoner at Andersonville during the Civil War, they spend all their time with their head in a toilet throwing up non-stop, their hair all falls out, they are so tired they can’t get out of bed to even care for themselves.

Here’s the good news: That’s almost definitely NOT going to be what happens with ABVD!  ABVD is a moderate course of chemotherapy — what’s actually bad about ABVD is how LONG a course it is.

What you can expect from ABVD:

• 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.  (For example, here’s me at Gettysburg between cycles six and seven.)
• You will probably be nauseated, at least sometimes and at least a little.  The “D” drug in ABVD is highly emetogenic, so most people do experience SOME nausea.  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.
• 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.

ABVD can cause some other side effects, too.  The notable ones I experienced included:

• Occasional mouth sores.  Using the mouthwash Biotene helped greatly in this regard.
• Hiccups.
• Lung problems from the Bleomycin.  Lung problems are not uncommon, but mine were more severe than the majority of people’s.  Please not that not everyone will even have even a mild problem.  Also, when lung problems do happen, they are usually a) caught quickly by your oncologist and b) reversible.
• Raynaud’s Phenomenon, a fairly uncommon side effect (my oncologist appeared to immediately know what it was, but seemed surprised I had it).

2.  Don’t be afraid to ask for help.

If you’re suffering a lot with a side effect, don’t be shy about speaking up to your oncologist or nurse about it.  Especially in the case of side effects like nausea, there are MULTIPLE drugs that can be tried.  So don’t give up.

3.  How did I feel after ABVD?

My experience was this.  I’d get treated on Friday (say Friday the 1st).  I would be sickest that Friday with a headache, nausea, and a generally ill feeling — think a bad case of the stomach flu.  I felt best if I was laying down.  Seriously — when you feel that terrible, your best bet is to try and sleep through it.  Saturday morning was bad, but by Saturday night I often could at least pick at dinner.  Sunday was an off and on again bad day, but I could usually eat an ok amount at dinner.  By Monday morning, I would feel well enough to run lightly and if forced, could work a half day.  By Wednesday I was back out running more fully and could put in a full day of work if needed.  I was normal again until the next treatment, which would be on Friday the 15th.

4.  Frustration?

Most people seem to go through a period — often midway through treatment — where they get really frustrated and depressed.   This is entirely normal, and it does pass, even though it is horrible to go through.  Just focus on today.  If you think about how long you have to go, you’ll just drive yourself crazy.

OK, now … how do they actually give ABVD?

I got ABVD sixteen times.  The first time was at the hospital because I had SVC syndrome, but the experience was almost identical to the other fifteen times as an outpatient.  Here’s what to expect on chemo day:

1.  Seeing your oncologist.

Every other treatment (so every four weeks), I had a short office visit with my oncologist where he would feel lymph nodes, go over how he thought treatment was progressing, ask about side effects and try to address them, or discuss any test results.  It was usually about a 10-15 minute appointment.

2.  Accessing the port or starting an IV.

If you have a mediport, they will access it and hook it up.  (If you want to know more about ports, check out my post about ports.) Otherwise, they will start a peripheral line in your arm, hand, wherever they can located a good vein. They will draw some blood 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.³ 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. I had some trouble with low platelets from time to time, but Dr. S always decided to go forth anyway. How low you are determines whether you go forward or not, plus this is part art and depends on your oncologist.
• Your WBCs. They will especially focus most not on the total but on your ANC. What is ANC? 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.

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

(If you’re 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.)

Tip: If you’re nervous about them accessing the port, try not to be.  It really does hurt less than a IV and it will save your veins in the long run.

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

There’s a formula based on weight and height used to calculate your chemo dosage — 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.

4.  Pre-Meds and Fluids.

Because ABVD causes nausea and vomiting, your doctor SHOULD pre-treat you for nausea.  If he isn’t, then I’d want to know exactly why.  The “D” drug causes nausea and vomiting in over 90% of those who get it.  Thus pre-treatment should be mandatory in my opinion.

It usually takes about thirty minutes to give your anti-nausea drugs.  These are given via an IV drip.  Some common ones include:

• Zofran
• Anzamet
• Aloxi
• Decadron (a steroid — usually combined with one of the other drugs listed.)
• Kytril

I used to get Emend (a pill), then Aloxi and Decadron via IV.  When I developed anticipatory nausea, I also would get Ativan added to the mixture.

A tip! Emend costs like $360.00 for three pills.  Make sure your blood counts are ok and you’re getting treated that day before you take it.

Along with the pre-treatment drugs you’ll likely be getting some fluids. The pre-treatment drugs shouldn’t hurt, burn, or cause any symptoms.  They also don’t taste bad or anything like that.

Tip Two: Make sure your oncologist has given you a prescription for nausea.  Anti-nausea drugs work best when used BEFORE you feel sick.  The pre-treatment drugs should last about 12 hours, but after that you will take pills.  I recommend taking it around the clock, rather than waiting for nausea to develop.

Tip Three: It’s helpful to have two anti-nausea drugs.  Take one around the clock, and keep the other as a reserve for “breakthrough nausea” — nausea that occurs despite the other drug.  And again, treat at the first twinge!  Nausea is easier to control than it is to treat.

I had a lot of nausea, so that’s why so many tips on this part.  it’s quite likely you won’t have as much as I had, but I think better safe than sorry.

5. The Real Deal Begins: Adriamycin

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 it. The nurse will “push it” — 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.  (Since I developed anticipatory nausea, I’d have them cover up the syringe, but even now writing this I feel a little sick.)

Of the drugs, this one hits the Hodge the hardest.  A lot of cancers get treated with Adriamycin, and it’s sometimes called “The Red Devil.”

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.

6. Bleomycin

“Bleo” comes out in a smaller turkey baster and it is pushed the same way as Adriamycin. It is a clear drug. Nothing 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 a reaction. Reactions are EXTREMELY rare, so this is a better safe than sorry safeguard.  That test dose does add some time to your first chemo that you won’t have at the later sessions, however.

7. Vinblasine

Vinblasine is basically identical to Bleo, except they don’t do a test dose and I think I recall the syringe was a touch smaller. 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.

8. Dacarbazine

Dacarbazine is given as an IV drip, over approximately an hour or so. It comes out in a brown bag usually to protect it from sunlight. By the way, if you end up sick to your stomach, you can blame this drug. It’s highly emetogenic. (Most people do great with the anti-nausea drugs, and that’s why they pre-treat you.)

9.  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.

Some other stuff of note:

• I never felt anything when I got the drugs, other than nausea, but that’s REALLY rare, and caused by an anticipatory reaction I developed. They never hurt or burned, though if you get an IV, I understand the spot can get sore.
• You can usually get up and walk around with your IV, just not while they are pushing your drugs.
• You can eat, drink, etc as you feel like you want to … Staying well-hydrated is very helpful.
• You can usually bring a friend, chat on the phone, play on a laptop, watch TV, etc.
• Chemo is usually given in recliner chairs — mine had a TV attached.

If you have any questions, leave me a comment and I’ll try to get back to you ASAP.  Also, if you think there’s something else that would be helpful to add to this post for future patients, please let me know that too!

1. ABVD is the “gold standard” for Hodgkin’s, but there are other regimens employed too, included BEACOPP and Stanford V, especially in advanced disease. [↩]
2. ABVD is almost always given as an outpatient, but I had my first treatment in the hospital due to SVC syndrome. [↩]
3. Low counts aren’t real likely during your very first chemo. [↩]

Tags: ABVD, cancer, chemotherapy, Hodgkin's Disease