These FAQs have been answered by women who have had chemotherapy for a gynecologic cancer. For more information, please visit our Web Resources section "Treatments and Tests" and Our Stories by survivors treated with chemotherapy.
Cathy B., Ontario, Canada: There is such an expectation of horror surrounding the idea of chemotherapy. It isn't always so bad. Granted, this is not an easy experience, but your reaction is entirely dependent on the drug and your general health going into treatment. I was on cisplatin treatment, given every three or four weeks for several months. I sat in a chair, an IV (intravenous) was inserted, and it took about four hours total to administer the drug, the anti-nausea agents and a saline solution. I did not lose my hair. Despite medication, I did get sick to my stomach for a few days after each treatment. It took about a week or so to start to feel myself again. Expect fatigue. After a few days, I found popsicles and soup were a comfort.
Lola, Utah, USA: The chemotherapy I was given when I was initially diagnosed was not too bad. It was really not until the third treatment that I began to experience hair loss, nausea, vomiting (which was managed well with medication), and fatigue. Still, it didn't keep me from doing almost everything that I did before.
The chemotherapy prescribed when I recurred was essentially the same drugs, with one additional added, cisplatin. The dosage was increased so I was being given much more chemo drug with each treatment. The side effects I had were likely due to the increased dosage. The methotrexate was about five to seven times the dose with EMA-CE as with EMA-CO, the initial protocol I was on. I had a lot of problems with toxicity and suffered from many side-effects this time. Severe headaches, sores in my mouth and throat, baldness, bleeding from my bladder, and episodes of severe vomiting, even with medication, to name a few. I had to be hospitalized for these things to be managed, so I could be "ready" for another treatment. It was grueling and the chemotherapy effects on my body at times were ruthless.
Linda O., Texas, USA: I was diagnosed with squamous cell carcinoma of the vagina, stage II, with no lymph node involvement. I had both chemo and radiation at the same time: daily treatment with external radiation Monday through Friday, with chemo once a week. This went on for five weeks. Then I rested for two weeks before having radiation implants done in the hospital for three days. My pelvic lymph nodes were also given radiation.
For chemo, I had cisplatin. I did the treatment on Friday; Saturday and Sunday was lousy, and then I worked the following Monday through Friday. By Wednesday, I felt like "brand new", and then I started over on Friday.
Each time I had chemo, it started at 8:30 a.m., with intravenous fluids, and didn't finish until 5:30 to 6:00 p.m. They really made sure my kidneys were flushed out, with fluids before the 1 1/2 hour cisplatin infusion, and two more bags of fluid after.
For nausea, I took Zofran by mouth and it was also given to me intravenously while I was given cisplatin. For the next couple of days, I only felt like eating things that were cold. I made sure that I drank at least eight glasses of water everyday until the treatments were finished.
My white blood cell counts dropped too low after the fifth chemo and I was given shots for five days to help build them up. Then my red blood cells went too low and I was given two pints of blood. I finished my radiation that week but I just couldn't take my last week of chemo, which would have been treatment number six. I guess I was lucky to get through five!
The main problem I had with cisplatin was a metallic taste in my mouth which made all food taste bad. I couldn't stand the smell of any food that was being cooked. I lived on frozen yogurt, milk shakes, and popcicles. I also had ringing in my ears.
My treatments were completed March 10, 2001. My experience was not pleasant but I used visualization to get me through it and tried to keep a positive attitude. I suffered more from the radiation burns and radiation side effects than from chemo.
After all the treatments, it took two years to feel normal again but today I am doing fine. All my cat scans, lung x-rays, and vault smears have been normal. My life was changed forever by having cancer, but it has made me love life and enjoy each day more.
Michele T., Pennsylvania, USA: As treatment for stage 4b vulvar cancer that had metastasized to vagina, cervix and lungs, I had six treatments of cisplatin and Taxol, each done three weeks apart. Because of the long infusion time (about 36+ hours), it meant I had to stay overnight in the hospital.
I had a port-a-catheter inserted in my chest and all my chemo drugs and pre-medications were run intravenously through the port. I did the Taxol first and that ran over a period of twenty-four hours. My doctors told me that running it slowly would help to lessen the side effects. Each time I had Taxol, there was an hour or two of close blood pressure and temperature monitoring to check for signs of an allergic reaction. The cisplatin was done the next day and took about six hours. Before each of the chemo drugs were run, I received various pre-meds like Benadryl, steroids and anti-nausea meds. Nothing ever happened to me during chemo and I hated staying overnight in the hospital.
When I got home from the hospital, I usually had a day before I began feeling really sick. I was very sick for at least a few days from the cisplatin, with nausea, vomiting and severe heartburn. Cisplatin can be tough on the kidneys, which is why they run clear IV fluids before and after to flush out your kidneys. You have to drink a lot of water afterwards also. I usually had a day I felt able to drink before the sickness set in; then I was lucky to get some Italian ice and a little bit of ginger ale down, but couldn't handle water until my tummy felt better a few days later. I did have problems with heartburn throughout the entire treatment, and for a couple of months beyond it, and took daily medication for it. It helped somewhat, but never took the burning completely away.
Despite all the tummy problems I still managed to gain weight during chemo, approximately three pounds each cycle. Some people lose weight with chemo, some gain weight. Unfortunately I really did not need the extra pounds as I was overweight to begin with, but my nurses and doctors always preferred weight gain to weight loss during my treatment.
I lost my hair and had some problems with neuropathy (numbness and pain in the hands and feet) from Taxol. The neuropathy peaked a few months after my treatments ended and then slowly began to get better over the next few months. I also had some problems sleeping for a few days, probably from the steroids, and was exhausted and generally felt like major crap for about a week after each treatment
The second week after treatment, I was tired but my appetite was back. The second week is also when blood counts tend to dip to their lowest so I had to be careful to avoid crowds, children, and anyone who was sick. By the third week I was usually feeling pretty good just in time to start the treatments all over again.
The Taxol/cisplatin three week combo (which is considered high dose) is one of the more difficult chemo treatments. It's considered one of the "big gun" treatments in the chemo world. I won't kid anyone, it was not easy. Each treatment was hard and they got progressively harder as they went on - the effects of chemotherapy are cumulative. As difficult as it was, I actually handled it pretty well. My blood counts never dipped too low so I did not have to postpone treatment at any point. And I was able to care for my then one year old daughter by myself every day for the second and third weeks of each treatment cycle (my husband and my mother-in-law helped me during the first week each cycle). My last treatment was about a week and a half before Christmas and it was a great present to be done with treatment and to begin to recover my strength. It took a few more months before I felt more energetic, and probably about a year before I felt "normal" energy levels. And in the end it was worth it because it worked! I've been "no evidence of disease" (or "in remission") for five years now.
I want to point out that doing Taxol by itself (or with another drug like carboplatin) is a different experience than what I went through. And the same goes for cisplatin - it can be hard (for instance, at high doses or in combination with other drugs like adriamycin) or much more tolerable when administered in lower, weekly doses. And everyone responds differently to the drugs. So it's important not to jump to conclusions when reading about responses to various chemos.
Cyndee D, Pennsylvania, USA: My chemotherapy treatments for ovarian cancer were a combination of two drugs, Taxol and carboplatin. We started off with one treatment every three weeks, for a total of six treatments. Once these were completed, we decided to do three more, for a total of nine. The decision was made because it appeared that women who did nine treatments instead of six had a longer remission. I figured I had come this far, so why not do three more?
Each time I would see my doctor for a pelvic and rectal examination and then I'd go to the chemo room. As a precaution, because of a history of allergic reactions to many drugs, they pre-medicated me with steroids. I would take steroids by mouth before the scheduled treatment, and I would also receive more steroids by IV before they would begin the chemo drugs. I was also given medication in the IV to control nausea, as well as a prescription for medication at home. It took about five hours to complete both chemo drugs. A lot of the time I slept, read, or watched TV.
During the months of treatment, my biggest complaint was being tired.
Every month I had blood work done, and there were a few CT scans during the months of treatment to monitor the effectiveness of the treatments.
For me, chemo was a way to get cancer out of my life and to have some control back in my life. I saw it as a way to be *normal* again. Each time, I would try to mentally prepare myself saying, "I'm only going to feel bad for a few days," and I would remind myself that I would feel better each and every day. Was it horrible? Not always, but sometimes one treatment would be rougher on me than others. But I was always glad when I was done with another treatment and I counted down, looking forward to the end. What really made it worthwhile was when we would see a drastic reduction in my CA125 or get results from a CT scan that showed the chemo was really working. But the best was when I was told I was in remission!
When my first recurrence was diagnosed, I had read a lot about clinical trials and decided that was what I wanted to do. The one we chose was a Phase II trial, which means that it already had been tested and had some success. There were two drugs - cisplatin, which is a fairly standard drug used for ovarian and other cancers, and tirapazamine, which was the drug that I was very interested in; it prevents the cancer cell from dividing into new cancer cells and the theory behind this study was that the combination would hit the cancer hard and stop it from growing.
This was a terribly rough chemo for me. Like my first treatment it was administered every three three weeks. I was pre-medicated with steroids, and given anti-nausea and anti-diarrhea drugs. I developed mouth ulcers and I was terribly sick each and every treatment. In fact this got so bad for me, I was not truly recovered from one treatment when it was time for the next. After four treatments, I backed out of the clinical trial. For me, it just ruined my quality of life - I really felt like I didn't have any life, and everything centered around my cancer, so I decided to take a break from treatment, and enjoy my summer.
Piret T., Estonia: I was diagnosed with squamous cell cervical cancer, stage 1B, at 33 years old, and during surgery, one positive lymph node was found (surgical stage 3B). I had four cycles of high dose cisplatin every 21 days, concurrent with daily radiation
Chemo concurrent with radiation was a very new protocol then. As a matter of fact, I asked for it myself - I showed my medical team articles I'd found in the New England Journal of Medicine that had just come out, recommending the dual treatment for better survival statistics and overall results compared to cisplatin alone. I decided I wanted to give the beast as big a hit as I could.
My treatments made me VERY tired and weak and sleepy - I slept until nine o'clock each morning, had a two to three hour nap midday, and went to bed each night by 9 p.m. Normally very active, I could barely walk for five minutes without stopping and resting. The third and fourth days after each chemo treatment were the worst; after going for my radiation treatment, I just laid at home for the whole day.
I had nausea from the chemo, sometimes throwing up on the third or fourth day after treatment even though I was taking anti-nausea drugs. I had no appetite, and all odours and the smell of cooking food made me feel so sick! So I lost a lot of weight - thirty pounds - and looked like one of those concentration camp survivors you see in old photos. I could not tolerate heat or warm places. My white blood count got very low, requiring Neupogen shots to help it improve. Cisplatin does not cause hair loss, so at least I didn't have to deal with that, but I did have a little bit of neuropathy (tingling and cramps) in my legs.
I was on medical leave from work, although I visited them sometimes, on days when I was feeling better. Chemotherapy gave me "chemo brain" - I lost my professional memory (I am a scientist) - I knew the words but they just would not come out when speaking, and I absolutely could not concentrate on anything serious.
As I mentioned, doing radiation during the same period of time as chemo was a new treatment protocol then. My doctor told me later that now they have found out that much smaller doses of cisplatin are as effective as the high dose I got - so one would not feel so sick from it. He said it would be much, much easier now.
Despite all this, looking back, I still think it was not really horrible - it could have been worse. Although it did seem pretty miserable when doing it, at the end I think it was worth it. I would not want to do it again, but if I have to, I will. But hopefully I will never have to .... it has been four and a half years (yippee!!!!) since my treatment, and I am healthy.
Michele T., Pennsylvania, USA:
Which drugs will I be getting, and on what schedule?
What side effects are associated with each?
How will these side effects be treated?
When do I need to call your office about a reaction or side effect?
Is there anything special I should not do during chemotherapy treatment? Are there any drugs I should avoid?
When will blood work be scheduled, and how often? What blood tests will be done? What are normal levels? If my chemo treatments affect my blood counts, at what levels would the treatments have to be postponed, and for how long?
Would you recommend a port-a-catheter to receive my chemotherapy infusions? If so, what type, and what are the pros and cons of each?
Cyndee D., Pennsylvania, USA: I carried a notebook with me, with my questions. Here are some that I asked at my first visit:
How is chemo done?
What will I feel during chemo? Will it hurt?
Will I have to be admitted to the hospital to get chemo treatments?
How long will it take?
What if I am allergic to it?
Will I get nauseous?
Will I lose my hair?
Can I eat before or during chemo?
Are there any special instructions to follow at home, before or after my treatments?
Marion C., New Jersey, USA: What is the intent of the chemotherapy treatments? Is this chemo meant to be curative? Or is it meant to "buy time"? If the latter, how much additional time would I be "buying"? Sometimes, the additional time added to the expected life span is short, and the quality of life, both during the chemo and during the "bought" time, may be questionable.
Did you have any unusual side-effects, besides the typical ones we hear about (nausea, hair loss, fatigue etc.)?
Lola, Utah, USA: I remember I used an eye lubricant called Lacri-lube® because my eyes were so dry during chemo. That was another side-effect - all my "moist" mucosa was affected, including my eyes and nose. Getting up in the morning was the worst! My eyes would barely open; they were so dry they had adhered to my lids. I put the lubricant in them at night - lower eyelids, one dollop - then I couldn't see, everything was all blurry. I remember baldly and blindly getting into bed. I felt like my dog who was partly blind and had thinning hair, bumping into everything.
This was a side affect that no one told me about. I kept thinking my eyes would feel better if I closed them, but actually they felt worse. When I finally went to the eye doctor, he told me it was from the chemo.
I found too, that my nose ran all the time. This was a significant annoyance to me - I had to be careful not to "drip" on anyone. It was like drainage incontinence! It became uncontrollable when I did round two of chemo, drip, drip, drip! I met another women with choriocarcinoma who had the same problem during chemo. She asked me about it, almost embarrassed, like "nose dripping should be one of the big concerns??" But I told her that I still remember the day that the dripping stopped. It was one of the happiest days of my life - really, I am not kidding!