So What's Chemo Like?

Chemo is a strange beast and different for each type of cancer – different regimens, different side effects. For my non-Hodgkin’s lymphoma, I am taking a cocktail called R-CHOP for short.

Rituximab
Cyclophosphamide (Cytoxan)
Hydoxydaunorubicin (doxorubicin or Adriamycin)
Oncovin (vincristine)
Prednisolone

When I had chemo for breast cancer, I also had to take Cytoxan along with another drug called Taxol. Notably, several documents I have seen on Cytoxan mention that there is a risk, although rare, of later developing blood cancers, like leukemia or lymphoma. Although my doctors are hesitant to say there is a link between my previous treatment and my current cancer, I do believe it is a distinct possibility. When I told my oncology nurse that I had been treated for breast cancer three years ago, she said, “Oh, secondary cancer.”

My first round of chemo took about 5 ½ hours, primarily because the Rituximab can cause an allergic reaction and has to be infused over 3 hours or so. To combat the possible allergic response, I have several additional drugs to take. For the first round only, I had to take dexamethosone, a steroid, the night before and the morning of chemo. Then, at chemo I started off with Benadryl before the Rituximab was infused. As it turned out, in the middle of my infusion, my mouth started to itch. As mentioned in my previous post, Benadryl by infusion makes you completely loopy, and I ended up getting a double dose. Wow!

The rest of the drugs don’t take that long. The Cytoxan is also infused but the other two, the vincristine and the Adriamycin, are injected straight from a large syringe (into my PICC line also, so no poke with that). The Adriamycin is bright red and turns your urine a lovely pink shade for the rest of the day.

My friend Renee was with me as she was when I had breast cancer. She’s a real trooper, especially since I know she doesn’t really like medical stuff. Then, I stayed with my friend Marci and family for five days while I was recovering. Thank goodness for caring friends.

Recovery from chemo is also different for everyone even given the same type of chemo, mostly because there are some rare side effects that some people get that others don’t. My weird side effect is that a couple days after chemo my jaw started to hurt every time I took my first few bites of a meal. Since it is always just when I begin to eat, I believe it is really my salivary glands that are the issue. Strangely, it stops after about three bites, but the first few bites are in the pain category of 8 on a scale of 1-10. Luckily, there’s the internet, so I was able to research my chemo drugs and found out that the culprit was the vincristine. Painkillers are the only thing that the doctors can prescribe, although cold packs helped a little when my jaw felt swollen for a couple of days. I also got “Magic Mouthwash” from the doctor. I don’t know exactly what’s in it, but that helps a bit. I have gotten some good advice from friends on complementary medicine and I’m going to look into that, too.

Luckily, for the most part, I do not have any nausea, which most people consider the hallmark of chemo. They have great anti-emetic drugs these days. I get Zofran (ondansetron) in pill form right before my treatment and then I take Reglan (metoclopramide). I only felt a little nausea when it turned out that the three days suggested to take the anti-emetics wasn’t long enough. I have to take it through the following Tuesday (about 7 days). Every day I bless all those people who participated in clinical trials to help develop anti-emetic drugs.

One of the unpleasant things I deal with is giving myself a shot of Neupogen, which helps keep up my white cell count, every day for seven days following chemo. It’s not the worst thing, but the first time it took a while to work up the nerve. I guess I can count it as a new skill in my repertoire.

Strangest of all for me is just having to deal with the medical process as a whole when I have otherwise been so healthy. In the past 20 years, other than for general check-ups, I have only gone to the doctor three times – once for a severe sore throat about 12 years ago and the two times that ultimately led to a cancer diagnosis. I am definitely not a hypochondriac. I have felt unnerved by all the tests, hospitalizations, medications, and regimens. Sometimes I just feel fed up and think – I want to be my old self! But you can’t really be your old self ever again when you go through something like this. Hopefully, you just use what you learn about yourself constructively and appreciate all the care and kindness you receive from others.

Gearing Up for Chemo

The first part of chemo involves gearing up – mainly getting all the other pharmaceuticals that they prescribe you in addition to the chemo drugs and preparing yourself for the big day.

In addition to my chemo drugs, I was prescribed twelve (!) other drugs to take – three of which have to be started prior to chemo and one of which I have to inject. I knew about the injections, but I hadn’t been told about all the drugs I would be taking. I only realized at the pharmacy what I would be dealing with when the pharm tech said, “You want ALL of these,” and I saw the pill bottles pile up.

There are various drugs to deal with the side effects of the chemo or to help you from having an allergic reaction to the chemo drugs when they are administered. It’s such a large number of pills, each with different regimens, I had to sit down a couple days before chemo and carefully fill out my little pill box (another thing I had hoped would gather dust on my shelf). I still had to speak to a nurse by phone just to confirm everything. As someone who works in public health, I can’t help but think about the elderly or those with low literacy or language issues trying to deal with this. It doesn’t help that the doctor’s office and the pharmacy often interchange their use of the commercial and generic names for drugs.

The other part of gearing up is being prepared for the day. This is my list of things to bring:

· Snacks
My chemo treatments were scheduled for Wednesdays at 9:00 A.M. and they told me the first one would last until about 2:00 or so. Unfortunately, my infusion center is not one of the swanky ones that actually provide sandwiches and such. Juice, if you’re lucky. So, if you are ever preparing to have chemo or accompanying someone going through chemo, be sure to pack some snacks. In case you are wondering, unlike on TV, most people getting chemo don’t immediately start vomiting. You should get drugs for that.

· iPod
You may have TV to watch, but you may also want to just close your eyes and relax…I’ve made my own Chemo Mix

· Books or puzzles
However, these may go unused if you have any drugs that end up making you loopy…Benadryl by IV, given with some chemo drugs that may cause allergic reaction, is like three martinis! If you are accompanying someone, consider bringing something to entertain yourself in case your friend or family member ends up being a little incoherent.

· Pen and paper
For writing down instructions you are given for follow up care. Especially helpful if you are given these instructions under the influence of the Benadryl martini.

· Camera, if you want to commemorate the event

Poked and Prodded - Part Deux

One thing that has been so difficult this second time around is that my poor right arm is getting maxed out on jabs and pokes. When I had breast cancer surgery three years ago, I also had a sentinel node biopsy, which involved removing a couple of my lymph nodes under my left arm. A person who has had this procedure is at risk of developing lymphadema in the arm on the side where the procedure was done. It causes swelling that usually can’t be reversed and can be somewhat painful from what I’ve heard. Because of this I am not supposed to have any injections or blood drawn, or my blood pressure taken, from my left arm. So, my poor right arm has taken a beating with all the blood draws, IV’s, etc. And, one of my chemo medications may cause some damage to my veins, so I need a better solution.

There are options to getting a semi-permanent access to your veins while you go through chemo – either a port, which is installed under your skin near your clavicle and requires a brief surgery for placement. It does require some stitches that will leave a minor scar. Then you just have to be poked slightly to get it going and all blood draws, infusions, etc., can be done from that one site without multiple jabs. The other is a PICC line. This was not the favored choice by my oncologist, but it won’t leave a scar. I feel I have accumulated enough scars already and I would prefer to deal with the PICC line just to avoid the scar, even though it’s a bit more work to maintain it than a port. I guess I feel like it is one little thing I have control over when I don’t have much control over anything else.

Monday, I was supposed to have the PICC line installed at a general surgery site of my health insurance company. However, it didn’t take. They got the procedure started, but a clot developed in the vein they were using and they couldn’t go further. The little wire they use actually got bent slightly…yikes!

So I had an appointment at a local hospital to get the PICC line installed on Tuesday. The procedure took about 45 minutes and, I have to say, was not so fun. They start by numbing your upper arm in the spot where they will insert the wire to thread through your vein to the right atrium of your heart. I did not find the threading procedure too comfortable…I could feel it all the way up to my armpit but not after that. Once that was completed, I guess they must have threaded in the catheter. However, I wasn’t looking.

I recommend bringing an iPod for all such procedures. Much more soothing and you get to hear what you want instead of silence, or the technicians discussing what they’re going to do to you, or their not so spectacular choice of music.

So now that it’s in, it is actually a bit of a pain in the butt to take care of. I have to flush it each day with saline solution and heparin and I’m not doing such a spectacular job of keeping it dry. But I'll persevere.

I had my first chemo Wednesday and so far so good…more on that in my next post.