DISCLAIMER: In this post I talk about specific medications that I take and how I take them. All of my medications are monitored by my care team. This is my experience and should not be used as medical advice.
I am currently on day 15 of cycle 3. This cycle has been the easiest so far. Not that it has been easy. Don’t get me wrong. Chemo sucks. Hard. But this cycle has been easier that the second cycle and the second cycle was easier than the first. I think most of this is because I learned from the previous cycles and have been aggressive and proactive with the medications that help manage symptoms.
I thought it might be helpful to break down what each cycle is like day by day.
Each cycle is 21 days long.
Day 0 – The day before the cycle starts I start taking Dexamethasone. This is a steroid meant to help prevent nausea, bloating, and allergic reactions to the chemo drugs. It also makes me cranky and it makes my mouth taste like I have been chewing aluminum foil. This means everything I eat and drink tastes terrible, including water. Yeah. I manage this by drinking sparkling water with lemon to stay hydrated. I also drink one glass of Mio Hydrate each day for the electrolytes because the steroids deplete my electrolytes.
Day 1 is the infusion day. It starts with blood work to make sure I am healthy enough for the infusion. That is followed by a visit with the nurse practitioner who goes over my blood work, discusses any and all symptoms I have had, answers any questions I have, offers advice and so on.
Finally I head to the infusion clinic. There is always waiting. Sometimes a little, sometimes a lot. Remember that each of these chemotherapy drugs is individually prepared and very expensive. They won’t start preparing the drugs until you are physically in the clinic and checked in.
Where I am receiving treatment they have really nice private infusion suites. There is a comfy recliner for the patient, a sofa for anyone hanging out with the patient, and all the necessary medical equipment. They escort you to the suite, bring you warmed blankets, bottled water if you want and start the IV and the premeds. In my case I get Benadryl, Pepcid, Aloxi (an antinausea), and Solu-Cortef (hydrocortisone sodium succinate – another steroid), all in the IV. Then I wait for 30 minutes or so to let all of those medications take effect.
Then they start the chemotherapy. One nurse – specially trained to administer chemotherapy, wearing a special apron/gown and double gloved sets it up.
I start with Taxotere. It take about 60-90 minutes for this infusion. During the Taxotere infusion I wear the cryo mittens and booties to help prevent peripheral neuropathy. These are very, very cold. I put them on and once it is so cold it starts to hurt I take them off to let my fingers and toes warm up them put them back on. This is not comfortable or fun, but it is working as I have not had any peripheral neuropathy.
Once this is finished they set up the Cytoxan. This takes 30-60 minutes. I typically have what feels a little like an ice cream headache during the infusion. The headache goes away as soon as the infusion is finished.
When the infusions are complete they remove the IV, I pack up and go home. I don’t feel great, but I don’t feel terrible. Mostly I am tired.
Day 2 is Fulphila day. This is an injection of pegfilgrastim, a growth factor that spurs your bone marrow to kick out more white blood cells. This is meant to help prevent neutropenia and prevent infections.
I start day 2 by taking Dexamethasone, 50 mg of Benadryl, 1000 mg of Tylenol, and 1 Imodium (to prevent diarrhea). I also take Compazine (anti nausea). If that seems like a lot of pills, it is. This is all about aggressively managing the symptoms.
Then I go back to the infusion clinic. Again there is a wait because again, the injection is very expensive and has to be prepared and they won’t even start until you are physically there and checked in. They also want you to receive this injection between 23-24 hours after the completion of your chemotherapy infusion.
This is an into the fat of your stomach injection. It sounds terrible, but honestly it isn’t that bad. The side effects – those are bad.
I take 50 mg of Benadryl and 1000 mg of Tylenol every 4 hours throughout day 2. This is to help tamp down the bone and joint pain caused by the Fulphila injection. And I am aggressive about this because the bone pain can be debilitating. The care team has most people use 1 Claritin a day for this but since I take Claritin everyday for allergies it was ineffective during cycle 1. The Benadryl control the histamine response which is at least in theory what causes the pain.
Back home again. Still not feeling great but also not terrible. Just tired.
I take Compazine along with the Benadryl and Tylenol before bed.
Day 3. This might be the hardest day. I am exhausted. I spend most of the day sleeping.
I take Dexamethasone, 50 mg of Benadryl, 1000 mg of Tylenol, and Compazine (anti nausea). The Benadryl and Tylenol will be every 4 hours until at least day 7 and then I will back off to twice a day.
Day 3 is when I remember how important the Krebs Cycle is for energy production and how chemotherapy disrupts this. The purpose of the Krebs Cycle is to produce tiny packages of energy for every function of the body. It requires billions of these reactions constantly just to maintain the basic functions of life. Your body is doing this while under assault from poisons. When it can’t keep up with the energy needed for vital body functions it cut off energy to the non-essential activities like movement of arms and legs and facial muscles. Even some brain activity. And that is why you are fatigued!
Chemotherapy can disrupt the Krebs cycle potentially leading to mitochondrial dysfunction and impacting cancer cell metabolism and survival. In other words, the chemotherapy drugs are doing their job to kill cancer cells (Pew! Pew! Pew!) but that comes at the expense of the rest of your body and disrupting the Krebs Cycle for the healthy cells.
Did I mention I sleep most of day 3?
Day 4 is slightly better than day 3 but I am still exhausted. I am still being aggressive managing all the symptoms.
The Taxotere tears up my entire GI tract so I have excessive gas, nausea (managed with meds), diarrhea (managed with meds), constipation (caused by antinausea and antidiarrhea meds and the chemo), that nasty taste in my mouth, and possible mouth sores (managed with the special chemo mouthwash).
The Fulphila makes all my long bones just ache. The Benadryl and Tylenol help but I still ache.
Are we having fun yet?
Days 5-7 are much like day 4. I am battling fatigue, sleeping more than usual, aggressively managing the worst of the symptoms. Each day is a little better than the previous one.
And that is week 1 of the cycle.
The second week (days 8-14) is better. I have more energy and the bone pain has mostly gone. The bad taste in my mouth very gradually lessens so food tastes a little better. I feel good enough to go for walks and to do a little bit of yoga.
The third week (days 15-21) is when I feel the best. The bad taste in my mouth is almost gone. I have more energy. I am no longer taking the Benadryl and Tylenol. I am still taking antinausea meds twice day alternating between Zofran and Compazine. I will probably decrease this to once day toward the end of the week. I almost feel normal.
This is when I refill the Dexamethasone for the start of the next cycle, and the antinausea meds.
It is at this point when I start dreading the next cycle. I know I am going to go from feeling almost normal to exhausted and sick again. I remind myself that this is the process to kill the cancer (Pew! Pew! Pew!) and that it is temporary.
This is what the cycles are like for me.
And I am almost done. One more cycle. I can see the finish line.
