Before I begin this post I want to apologise for not blogging up until now. I have only recently been discharged from the hospital following my stem cell transplant and I needed to take the time out to recover.
I started ICE, my second round of chemotherapy at the end of December 2016. As opposed to ABVD (the chemotherapy I was given the first time before I relapsed) this cocktail required me to stay at the hospital for a few days for each cycle I had so I found out I’d have to spend New Years Eve at the hospital – something I wasn’t too thrilled about at first. However, that night I learned a very important lesson; despite being stuck in a hospital room hooked up to machines I had the people I loved with me and that was all I needed.
I’ve mentioned this previously and I’ll say it again: When starting chemotherapy it is good to have an idea of what to expect but never assume any two people will have the same reaction. The reason I stress on this is that when I was first diagnosed I was told that ABVD was one of the easiest chemo regimens out there to have and although it won’t exactly be a breeze, it probably wouldn’t affect my life too much. My experience with ABVD was far from a breeze. I will never forget the days that followed the first session I had; I was told to only expect some nausea and loss of appetite for a few days after. Well, I had none of that but what I did face was excruciating bone and muscle pain a few days after the session for five consecutive days. Every bone and muscle in my body ached. Breathing was incredibly difficult because the muscles in my chest and even my ribs hurt. I tried every painkiller short of morphine and I was still kept up every single night by the pain. If you have ever taken Neupogen/GSF (growth hormone factor) shots and experienced some bone pain then you might understand, except the pain is a hundred times worse. The pain was so bad I considered giving up treatment but then I thought of all the plans and dreams I had for my life that I’d be giving up as well and I knew that that wasn’t an option. Fortunately, I was put on strong painkillers for the remainder of my treatment to keep the pain at a tolerable level. At the time it was incredibly discouraging to find out that this was so rare; I had never read on online forums of anyone who’d experienced this. That being said, my doctor told me ICE would be much worse than ABVD so I expected the worst but my experience with ABVD taught me that my body will react in its own unique way with the chemotherapy.
ICE is tough and the dose given is much higher than that of ABVD. I had a total of 3 ICE cycles; which were 17 days apart. The first two cycles I had were five days long each and the third was three days long with continuous chemotherapy infusion.
NAUSEA: For starters, I definitely had a lot more nausea with ICE; I even threw up the morning after my first cycle; which, if you know me, is something I absolutely hate! I later discovered the reason that happened was because I’d forgotten to take my Zofran pill the night before – big mistake! If you are going through any kind of chemotherapy, never ever forget to take your medications, trust me you will regret it later. Food was disgusting the first 2 days after the end of each cycle; boiled potatoes and rice became my new best friends.
ACID REFLUX: This has definitely been the absolute worse side effect I’ve experienced so far. I think it started towards the end of ABVD, which went away as soon as the sessions were over. However, with ICE it came back with a vengeance. I have been on Nexium since I started treatment last year but its effectiveness seems to be wearing off. Unfortunately, acid reflux comes with a whole set of hurdles. Aside from the horrible metallic taste in my mouth and the constant foamy saliva, it also adds to the nausea and loss of appetite. I discovered a few tricks to make it more manageable: 1. Steering clear of spicy foods and chocolates 2. Chewing mint-flavoured gum has been a lifesaver on more than one occasion 3. Adding pillows to increase the elevation when sleeping 4. Black pepper! This is supposed to make acid reflux worse but I found it to be very helpful.
FATIGUE: The fatigue I had with ABVD was just as unimaginable as the pain I experienced. There were days I spent in bed and only got up to go to the bathroom. Some days I was too exhausted to lift a fork and feed myself. This is the kind of fatigue that not even sleep could fix. I was told the fatigue from ICE would be worse and once again, the surprise came after discharge. Though I did have some fatigue over the next few days, it was nothing a few short naps couldn’t fix. Minimal fatigue and no pain! By the third day, I was feeling fantastic! So fantastic it didn’t even feel like I’d just had chemo. I desperately wanted to live as normally as I possibly could; so only 4 days after my second ICE cycle, I travelled to the UAE for a short vacation. It was the most exhausting flight of my life; I arrived half dead but it was totally worth it and I’d do it all over again if I went back in time. I realised then that the side effects took longer to dissipate this time, which was something I also experienced with ABVD. This is known as the cumulative effect, which basically means the fatigue adds up throughout treatment. During ABVD, the fatigue first lasted five days and towards the end of the cycles, the fatigue would almost last the entire two weeks before my next session leaving me only three good days before chemo. ICE brought on something similar, the third cycle was definitely the worst in terms of fatigue and lack of energy.
PERIPHERAL NEUROPATHY: This is basically the sensation of numbness or tingling in the extremities (hands and feet) though I only had some in my toes, which would go numb for a few days after each session. It didn’t bother me too much though because it was usually mild. The Vinblastin in ABVD and the Cisplatin in ICE both were the culprits behind this wonderful sensation. I love massages and this was the perfect excuse to get foot massages all the time.
TINNITUS: Since I’ve started ICE, my ears have been constantly ringing, a rare treat that apparently comes with Cisplatin (the C in ICE). After assessment and a hearing test I was told I have ototoxicity; which basically means my ears are slowly getting destroyed by the Cisplatin and I’ll have to get my ears checked every 6 months and hopefully there won’t be any permanent damage by the time I’m done. Fun times. It doesn’t come without it’s perks though. I definitely abused this by convincing everyone around me that they’d have to almost whisper around the house to not bother me. Since I come from a loud family, it was hilarious seeing them struggle with trying to keep their voices down.
NOISE SENSITIVITY (?): I’m not sure what this is about and I’ve never heard anyone go through this before but noise was always problematic for me during the week following each chemo session during both ABVD and ICE. Needless to say, when I developed tinnitus it made loud noises much more intolerable.
CONSTIPATION: I am sorry for the information I’m about to divulge but I did promise complete transparency no matter how embarrassing or disgusting it is. You wouldn’t understand how terrible constipation could be unless you haven’t been able to pass stool in over a week. Let’s just say, with both chemo regimens a normal bowel movement was definitely something to be celebrated. If I really had to pick, I’d say the constipation was worse with ICE. However, that could be due to my newly acquired acid reflux, which is always worse when I’m constipated.
CHEMO BRAIN: This is real! Brain fog wasn’t a thing with ABVD but with ICE it was quite the struggle. I’d have conversations with friends that I’d forget I had only a day later. Concentrating was near impossible. I tried to update this blog several times but I was unable to put sentences together. I even forgot to take my medications a few times!
HAIR LOSS: Before I started ABVD, I cut my hair short to prepare myself for the eventual hair loss but honestly nothing could have prepared me for that moment when I ran my hands through my hair and noticed many strands. My hair didn’t start falling out right away; it began after the 3rd or 4th session and it was only a few strands at first. I remember taking a shower and while I was washing my hair, so much was falling out at once I cried and I was so sure that I was going to be bald by the time I got out of the shower. That didn’t happen though; in fact, I never went bald with ABVD. My hair only thinned out a lot gradually as did my eyebrows. Towards the end I started wearing bandanas to cover up my bald spots because I never had the guts to shave my head. The upside is that my hair was starting to grow back right before my last chemo session and a month after I was done I had no bald spots left. My hair grew back thicker, healthier and softer than it had been before.
ABVD hair timeline:
When I relapsed and was starting ICE, I honestly thought that losing my hair again wouldn’t bother me because I’d been through it before, but I was wrong. When my hair started falling out again, it was a physical reminder of everything I was losing to cancer again. This time with aggressive chemo the hair loss was not subtle or gradual. A little over a week after I had my first cycle, my hair was falling out in thick chunks and I started developing bald spots right away. It only took a few days after it had started falling out for me to decide I wanted to shave it all off. It was one of the toughest things my mom ever had to do but we both managed to get through it with no tears. I thought shaving my head would be so difficult but it was actually very liberating. Watching my hair fall out every single day was so painful and emotionally exhausting, my only regret is not shaving it off during ABVD.
ICE hair timeline:
Piece of advice for my ICE peeps out there. You are most likely taking ICE in preparation for the stem cell transplant which will be a month long stay at the hospital at best. So take advantage of any good days you have in between the ICE cycles; go out, have fun, travel (if your doctor allows it), eat good food and just enjoy life. Trust me, you’ll need the energy recharge before you head into the transplant phase.