BEP chemotherapy for Ovarian Dysgerminoma

Nobody tells you what chemotherapy is going to be like. Will it hurt? Will you instantly feel sick? Just how tired will you get? The list goes on and on. One thing I can tell you from experience is that my first day of chemotherapy I had my first, and last, panic attack of my life – pulling into the parking lot of the chemo-center.  I didn’t know what to expect and in retrospect I wish I had talked to someone who had been through chemotherapy to know it wouldn’t be so bad.

I am a naturalist. My whole life I have been dedicated to taking care of myself, eating organic, exercising, drinking plenty of water, doing everything as all-natural, as possible. I was pulling into a place feeling better than ever, after having that pesky 5 pound tumor removed, signing up to completely blast myself with toxins! What in the world am I doing?

Oh my god! Oh my god! Oh my god!

Much to my surprise that day I didn’t even know when my chemo started!! Haha! Totally, not what I expected. They always give you fluids first so I started with that and a couple hours later I asked the nurse, when will we switch to the chemo and she said, “Oh honey, we did that a while ago.” Phew! What a relief!

Chemotherapy, like many things in life, is what you make of it. Make the best of it. Don’t sit alone. Find a buddy to go with you. If you don’t have one, find a good book or movie to pass the time. I always found on days where my chemo buddies were more occupied with Grace that Ellen always made me laugh and feel good. She is so kind to others and funny. She is a great breath of fresh air. Find your person or thing. Don’t sit and dwell on your cancer and treatment. If you have Ovarian Dysgerminoma your prognosis is amazing and this is a little bump in your life long journey.

The following is a summary of how my treatment of Ovarian Dysgerminoma with BEP chemotherapy went. I hope this helps anyone out there about to embark on this journey.

Start and end date:

Start date: March 12, 2012

End date:  May 29, 2012

Schedule:

4 rounds, each round consisting of one full week of BEP chemotherapy 8-5, Monday- Friday, with a dose of Bleomycin the following Monday and a Neulasta (white blood cell booster) shot on Tuesday.

My “Cocktail”:

BEP (Bleomycin, Etoposide, Cisplatin)

Possible Side Effects:
*Reading all of the possible side effects quite honestly can drive you crazy and make you wonder if your treatment is worth it. It is worth it! Every second of every treatment is worth any possible side effect. I have compiled a list of side effects I feel were most pertinent to my treatment to save you some reading anxiety. Also please note that any time you are experiencing difficulty, let your nurse know. You would be surprised at how they can counteract almost anything these days.

Risk of Infection
I believe this is the single most important side effect to watch for. Anytime you get a fever while you are being treated for cancer it is SO important to immediately be seen. I was lucky enough to have not gotten a fever during chemotherapy. Two acquaintances of our family have not been so lucky this year. Both of them died of an infection while receiving treatment for cancer. Chemotherapy often drops your white blood cell count making it very difficult for your body to fight infection. One sign you may have an infection is a fever. Fever=Hospital! GO, GO, GO!!!

Bruising and Bleeding
Be sure to be aware of bruising and bleeding during chemotherapy and alert your doctor if you are experiencing bruising and bleeding especially if you are on blood thinners.

Anemia
It is very easy for your blood counts to get out of whack during chemotherapy. It is important to talk to your doctor about the proper foods to eat and vitamins to take. In my case my counts never really dropped out of the normal range. I was very lucky in this way. One big contributor was the advice of my favorite nurse, to take Bifera to keep my iron levels in the normal range. As with anything during treatment be sure to consult with your physician before taking any supplements.

Nausea and Vomiting
There have been wonderful advances in this area over the past few years. If you are experiencing nausea and vomiting let your nurses know. They will give you all kinds of wonderful goodie drugs to keep your belly feeling nice and settled. Ativan, aka Lorazepam and Zofran were my saviors and made nausea almost non-existant. Don’t be alarmed that Ativan is an anti-anxiety medication as I initially was. It is also used to help nausea. I was SO against using it because it was an anti-anxiety. So much so that I spent a lot of time next to the porcelain god at the end of my first week. SO SILLY!!! I quickly gave in. After all my first nausea incident was at the end of my first week of chemo and my birthday. Who wants to be sick on their birthday? Not this girl!

Fatigue
Yes, you will get tired. You will get very tired, but you don’t have to let it consume you. You can work through it and the more you work through it, the less tired you will be. The things I used to combat fatigue were exercise, FRS (Please don’t get the low calorie crap. It contains artificial sweeteners and is bad for you!), an awesome attitude, good vitamins, and healthy eating.

Hair Loss
Yep! You are going to lose your hair. Have fun with it and don’t despair! It’s your temporary badge of fighting honor. I lost mine at the beginning of round two. For more on loosing your hair read my post Goodbye Hair! See you Next Year!.

Mouth Sores
Cisplatin and Etoposide are two of the seven most common chemotherapy agents to cause mouth sores. If you are getting BEP chemo you are lucky! You get a double whammy. I’ve heard mouth sores are pretty common and painful. Like losing your hair it’s another one of the areas of your body with rapidly dividing cells which chemo loves and is meant to attack. I was one of the lucky ones that did not get mouth sores. I am convinced I did not get them because I stayed very well hydrated, took great care of my teeth and ate a ton of fruits and veggies. This may or may not be the cause for my streak of luck with this side effect but one can hope that it was as simple as that. If you do experience mouth sores I have heard rinsing your mouth several times a day with warm water and baking soda really helps alleviate some of the pain.

Taste Changes
Again, I was very lucky in this area and like other side effects I escaped I believe it is because I stayed very well hydrated and didn’t let the toxin levels overtake my body.

Skin Changes
Bleomycin can cause dark streaks on your skin. I did not know this going into my treatment. The thing is, you are hit with pages and pages of possible side effects that honestly when you have a newborn, and cancer you just don’t have time to read. If I would have known about this particular side effect I would have made a conscious effort to not scratch my skin. Everywhere I scratched I have dark streaks. These may eventually fade but so far I have not seen any fading. I have read that scratching while receiving Bleomycin creates the streaks.

Kidney Issues
Etoposide can negatively impact your kidneys. It is very important to drink plenty of water while going through chemotherapy and life in general. Who wants to get out of beating cancer only to battle kidney issues?! DRINK WATER, DRINK WATER, DRINK WATER! Another important protector is to receive Mannitol to coat your kidneys. Mannitol seems to be in high demand. If at all possible be sure to always receive it. Be your own cancer advocate and beg to not skip a dose.

Changes in Hearing
I have definitely noticed a change in my hearing as of late. The change hasn’t been drastic but I notice it in large social settings. Over the next few weeks I will investigate ways to possibly avoid this and report back to hopefully help anyone about to embark on this journey. I don’t have an answer for helping it at this time.

Nail Changes
If chemotherapy did anything to improve my physical appearance, it gave me the most awesome fingernails I have ever had. They were like wood! Nothing would break them. I miss my chemo nails :).

Numbness and Tingling in Hands and Feet (Neuropathy)
Be sure to tell your doctor if you begin to experience this side effect. This is a sign that the toxin levels are getting a little too high in your body. You don’t want neuropathy. It is painful and annoying. Vitamin E and the B vitamins are very helpful for preventing neuropathy. If you do experience neuropathy there are some ways to treat it post-completion of chemotherapy. See my post on Neuropathy.

Pain at Injection Site
My chemotherapy never hurt going in. It was like getting normal fluids. However, the area around my PICC line always felt slightly bruised but not in the least bit painful.

Secondary Cancer
Etoposide can lead to a secondary cancer later in life. How ironic is that?! This was and still is a big worry of mine but that worry is subsiding. The thing is, there will always be worry once you’ve experienced cancer. The triumph is learning to worry about the controllable. For more on the triumph of learning to worry about the controllable please read my post, Controlling the Controllable. This is uncontrollable! Just be sure to be on top of your health. Always make your follow up appointments, always be aware of your body, and always live a healthy lifestyle. That is the best you can do.

Risk of Developing a Blood Clot
In my case I developed a blood clot before beginning chemotherapy. I was immediately put on blood thinners and continued them until well after the completion of chemotherapy. I did not know cancer caused blood clots and when I had my first clot spray into my lungs before actually getting my cancer diagnosis I had no idea that this could indeed be a sign my mass was cancer. For more on blood clots, including symptoms, please read my post on Pulmonary Embolisms. Your chemotherapy regimen can also cause blood clots so please once again be aware of your body. I’m not trying to be an alarmist, it is just extremely important to watch for key things when you have cancer or are waiting on a possible cancer diagnosis.

Fertility Issues
Oh fertility issues how I loath thee and wish I knew more before going into this process! This particular chemotherapy schedule can cause infertility and send you into premature menopause. Often times this premature menopause is temporary, as was the case for me. Don’t be alarmed if it is several months before your cycle starts up again. At a follow up appointment I was sent into a state of panic when my nurse practitioner was surprised I still hadn’t had my cycle. I spent the next week so unbelievably upset that I was in menopause feeling like I was suddenly in my 50′s. In retrospect, this is a small, small price to pay for having my life. Later that week I got a call from my doctor asking me to come in to discuss. For more on that discussion please read my post, Fertility Post BEP Chemotherapy.

4 comments on “BEP chemotherapy for Ovarian Dysgerminoma
  1. alwaysrcorliss says:

    This is an excellent explanation of the “cocktail” you had, a great advisement of the possible side effects along with how to help them, and a very honest take of your experience with it all.

  2. Diana S says:

    I have definitely done my best to stay hydrated. 3-5 liters per day. I just finished my first round on Friiday. Sadly, my taste has been affected and while I haven’t gotten mouth sores, I have noticed irritation spots on my tongue and in my mouth. Also, I have been having trouble breathing. Not necessarily shortness of breath, but it almost hurts to inhale. It is taking effort to breathe. Did you experience anything like that while you were going through chemo?

    • Trish says:

      Hi Diana- Sorry to hear you are having some nasty side effects. My lung function remained really good and was checked every day of treatment. I was convinced each day that it wouldn’t be good because I had pain when breathing in just below my left collar bone and above my breast. It was a sharp, watery feeling (that’s the best way I can think to describe the pain). I believe looking back it was at least for me from having so much fluid in me. It was always worse when I got fluids. Even now, I have that same feeling if I have too much water which is weird because it was a non-issue pre chemo. Have you had lung function tests to see if your lungs are okay? Please keep me posted. I hope you are on the mend very soon. ps: I have read a lot about rinsing your mouth with baking soda and water.

      • Diana says:

        Hi Trish,
        I have actually had to cut bleo out of my routine, my pulmonary function tests showed that my diffusion levels dropped by 46% (they usually expect 20-25% decrease). So, I only got two rounds of bleo. I just finished round three last week. I have noticed that if I am careful and stay away from too much sugar and processed foods, my taste buds & mouth are more comfortable. Unfortunately, sometimes not eating processed food is impossible, since I have been neutropenic for the majority of my time going through treatment. My blood pressure has been staying really low, so I need to make sure that I eat enough to keep my blood sugar up to prevent light-headedness and dizzy spells. Nearly all the way through, I have round four at the end of the month, then they will be doing a PET/CT to determine if radiation is necessary. Thank you so much for sharing your experience with your cancer and chemo. It has really helped me to get through my struggles… and explain some of the weird things that have happened (like the brown scratch stripes from the bleo).

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