What is chemo? Mel's Treatment Diary

It's funny when I tell people now that I'm back on the "real" chemo.  I'm pretty sure only 30% of people I talk with have a real understanding about chemotherapy.  It's not just one drug.  Chemo consists of over 100 drugs, and every drug has it's own name.  I have been around the block enough to have received about a dozen of them.  I am currently on just one chemo drug.  I am back with the majority of patients receiving chemo through an IV.  Some chemos are simply administered through a shot or pill, which I was lucky enough to try out for 9 months.  Some chemos need to administered more specifically into the body including a spinal tap (ouch!).  I've included the last 8 years of my chemo history to give you a bit of understanding about how chemo works, and how it affected me directly.  This is insanely long, so also simply check out the links I provided throughout and at the end of this for more info!

Here's a bit of my chemo hisotry:

When a patient is first diagnosed with Hodgkin's Lymphoma, the protocol is the chemo cocktail ABVD.  Chemo cocktail?  Right up my alley!  Most (if not all) chemos are abbreviated because their names are close to impossible to pronounce let alone try to remember!  ABVD stands for adriamycin, bleomycin, vinblastine, dacarbazine.  (And if you are at all familiar with adriamycin, all I can say is UG!)  BVD was infused from their individual bags over several hours.  The adriamycin was administered as a push in a giant syringe which took only minutes.  The iv machine could do it, but I had the nurses push it so I could receive breaks from losing my cookies!  (just thinking about that giant red tube makes me feel nauseous!)  I was on ABVD for 8 months receiving treatment every other week.  That was back in 2004.  Total treatment time for all 4 drugs was an afternoon.  Not amazing, but not bad at all.  As for side effects, I lost my hair and was completely nauseous.  Although I found a quick treatment for my nausea (I did not care for the nausea meds provided by my doc) - I indulged in food.  Food was my best friend helping me to feel better physically and mentally.  I gained about 30 pounds by the end of the ABVD treatment.  The other big side effect was fatigue.  I slept for about 48 hours straight after every treatment; I called it my chemo hangover.  Think about your worst case of the stomach flu on top of your worst hangover... that's a chemo hangover.  It only lasted days, and by the end of the week I was energized enough just to do it all over again.  I was permitted a handicap sign for my car so I could park as close to every one of my classes on campus - the fatigue was pretty bad.  I look back at how strong I was not letting cancer take over my life as a college student - damn I impress myself! 

My tumors did shrink during the treatment as expected, but unfortunately they were stronger and started to grow again towards the end of the 8 month protocol.  Hodgkin's Lymphoma patients have over a 90% success rate with the ABVD so this was surprising and disapointing considering my age (21).  The amount of treatments that every patient receives is different depending upon the stage of the cancer.  I was only in stage 2 at the time.  Since the ABVD failed at putting me into remission I had to move back to St. Louis for more in-depth treatment.

Next on the chemo list: ICE.  Sounds pretty cool, but totally deceiving!  Ifosfamide, carboplatin, and etoposide had to be administered in the hospital for a 3 day span.  The chemo itself wasn't so bad, but the bags took FOREVER!  I was on chemo for about 60 hours straight - that's a long time to be attached to an iv pole.  This was administered 3 times over a 9 week span (Fall 2004).  

Now this is where I learned that chemos are used differently.  The point of ABVD was to rid of my cancer, although it did not work.  The ICE treatment is not used to rid of tumors, but to prep the cancer cells for a total clean out that will soon occur with high dose chemo (yes, it is much more scientific than that, but even if I wanted to, my chemo brain couldn't even begin to get into the technicalities of B-cells!).  I lived the cushy life as a cancer patient in the hospital for 3 days at a time.  I wasn't ever in pain or sick, just nauseous, so I stayed strong and let the whole world spoil me :)

I took a few weeks off after ICE and rested (and took many trips to Mizzou and SMS to visit friends when I was feeling better).  This allowed my body (and mental health!) to become stronger for what was about to occur: my trasnplant.

Now, the misconceptions about my stem cell transplant...  It is not a bone marrow transplant.  My cancer has not spread to my bone marrow (which was most recently tested last spring and is still clean!).  Although it is similar...  Stem cells are in your blood and are the creator for everything else in your body.  The reason for the transplant was to allow my body to recover from the high dose chemo.  High dose chemo is the queen bee of all chemos. Unfortunately, I do not have the memory or research of the exact drugs I was on at the time.  There were a handful of them and their doses were rather lethal.  But they were strong enough to kill my tumors so it was a risk we had to take.  I was admitted to the hospital for about a month for this all to take place.  It took about a week duration for the different drugs to be administered.  Every day I became weaker and weaker.  I then spent time being lifeless just laying in bed letting the chemo work it's job on the tumors.  The issue with chemo is that it cannot be controlled to only kill my cancer cells; it all kills all of the good cells as well.  While my tumors were dying, the rest of my body was slowly shutting down.  I do not remember much about the time in between the chemo and transplant, I believe I slept through most of the week.  It was painful and miserable, talk about a chemo hangover!  When enough time passed for the chemo to destroy the cancer but not my organs, it was time for the stem cell transplant. 

Weeks prior to this I harvested my own stem cells.  My blood was pulled from my body through one catheter (my port), sent through a giant machine that I referred to as Snuffelleupagus, and then returned to my body through a different catheter.  While my blood stopped through Snuffelleupagus, my stem cells were extracted and saved for my transplant.  And now it's time to brag... this process is referred to as pheresis.  Pheresis can take a couple days up to a couple weeks to get enough stem cells collected from your blood.  There is no rhyme or reason to it, but extracting stem cells from blood takes different amounts of time for every patient.  Determining my health factors, they figured about 3-5 days for me.  And yes, you are stuck hooked up to this machine ALL DAY.  Well, I made my way into the Barnes book of records - I completed pheresis in ONE DAY!  While the rest of the people my age were trying to ace their mid-terms, I was dominating pheresis :)  I do believe when I received the amazing news in my hospital room that night I jumped on my iv pole and began riding around shouting, "Pheresis ain't got nothing on me!"

Back to the transplant - After about a week of observation, it was time to replace my stem cells and let my body heal from the high dose chemo.  Stem cells are administered like a blood transfusion, but it doesn't take as long.  It made me sick and created yet another awful hangover, but within days my body began to regain strength and come back to life.  By the end of the month span I was out of the hospital and back in my own bed.  I had a home health nurse take care of me daily until I was ready to reenter the world about a month later!

Lastly on my trip down treatment lane, I followed up with radiation treatment.  I received it for about 30 minutes everyday for 30 days.  This occurred about 2 months after my transplant.  The radiation was aimed on my affected lymph nodes, preventing the from occurring once again.  Going into radiation, I was overweight.  Not horrible, but for being 5'4" 160lbs. is definitely over weight.  The radiation was directed to my chest where my lymph nodes/tumors had once been.  Radiation is like getting a bad sunburn, so my back and chest turned brown.  Also, my esophagus was affected from receiving a sun burn as well.  I was unable to swallow food by the halfway point of treatment because it was too painful.  My overweight body quickly became an unhealthy 115 lbs. due to starvation.

It took my body about a year to fully recover from all of the treatment.  It needed to regain nutrients and weight.  I was in remission and back in the real world.  Although follow-up scans never showed promising news.  My tumors grew primarily in my chest.  After all of the treatment was said and done, there was a tiny bit of "activity" in my chest.  It was not enough to be concerned about, but it grew about a hair's width every year so my oncologist kept a close eye on me.  I was in remission for over 6 years when I relapsed - the activity she had been watching finally grew significant amounts.   

Since I have already tried the ADVB treatment once ending with failure, it is not expected to work a second time.  Although a second transplant is still an option if my tumors do not respond to the chemos they are trying now.  When I was being treated in 2004 it was believed that the cancer was simply in my lymph nodes.  The doctors have learned from my relapse that the cancer is also in my blood.  The question I am asked most often, "Why don't they just remove the tumors?"  First, one of the tumors is in my lung - not easy to remove!  It's possible, but requires a lot of inpatient care.  It's dangerous and unnecessary since I am functioning so well with it in there.  The other one (possibly two) are just outside my lungs.  The actual tumors are not what is killing me.  The cancer cells in my blood can be carried anywhere to create tumors.  By watching my tumors shrink we know that the chemo is strong enough to kill the cancer cells in my blood as well.  IF the treatment they are trying right now does not work and we end up with another transplant, I will not be able to use my own stem cells - they are tainted with cancer.  Krissy will be the first one tested as a match.  And if she's not (cause really, what do we actually have in commom?! haha), then we'll hit up the donor list.  Then it'll be back to the hospital for the high dose chemo and transplant.  That is hopefully not going to be necessary!

Now that we know the lenalidomide pill did not work for the past 9 months since I have relapsed, I am on Brentuximab Vedotin.  It is an infusion, but luckily only a 30 minute drip.  The only big reactions I am having thus far is intolerance to some foods and bits of feeling lethargic.  I gained 15 pounds on Lenalidomide, mainly because I stopped any physical activity - I'm just too pooped!  I should have a bit more energy and am being forced to eat very healthy with BV so I'm hoping to get my body back into shape.  I have noticed a tiny bit of hair thinning, but luckily I'm not expected to lose my hair!

Since I have relapsed I have been very fortunate to have simple side effects.  The statistics are not looking so hot for where I am in the Hodgkin's process, but this new drug, BV, is providing some promising results.  

For more info, check out the American Cancer Society.  They are after all the Official Sponsor of More Birthdays.  Pretty damn cool if you ask me :)

I love this sight too .  Learn more about my specific cancer from MacMillan Cancer Support.