Follow the links to read personal accounts of:
Personal Experiences: Chemotherapy
Chemotherapy: Cisplatin
Greg's Experience
Greg, a YCS board member, submitted the following experience about his wife
Stephanie:
Drug: Cisplatin
Stephanie had cisplatin combined with an experimental drug called S1. Though
many people can have bad side effects with cisplatin, Stephanie's were manageable.
After the fourth treatment of the five they had planned, the doctors decided to stop the cisplatin. One month later, she started to experience some tingling in her hands and feet. The tingling was not bad enough to handicap her, but the feeling of them being asleep annoyed her. Overall, Stephanie's experience with cisplatin has been tolerable and has not interfered much with her daily life.
Karen's Experience
Karen, a YCS board member, submitted the following experience about her
husband Mark:
Drug: cisplatin Cisplatin caused nasty side effects. It appeared to intensify the effects of the radiation which Mark had had previously. That would have been great had it killed the cancer, but it did little to reduce the tumor. It made his chemo brain worse. Later, the surgical wounds and the surrounding skin opened up into open sores, which was probably related to the cisplatin from what the doctors said, requiring treatment similar to that a burn victim would need.
Cisplatin/Etoposide
Matt's Experience
Matt, a YCS board member, submitted the following experience about his wife
Kara:
Drugs: Cisplatin (100mg/m2) and Etoposide (100mg/m2)
The side effects of cisplatin are directly related to the dose received and are cumulative over time. Kara received an extremely high dose of cisplatin, and thus this personal experience is probably not typical for this treatment combination. The first cycle of chemotherapy was pretty bad while Kara was in the hospital. Vomiting began about eight hours after the cisplatin and continued for 2-3 days. Kara recovered very quickly and was up and around by the weekend.
For the second cycle, we tried a new drug called Emends from Merck to help with the nausea and vomiting. It was an effective drug for Kara because she had almost no vomiting and minimal nausea for the second cycle.
Kara had four more cycles of Cisplatin and Etoposide, and each cycle would get progressively worse. We tried several different cocktails of antinausea medications, including combinations of Emends, Zofran, decadron, Marinol (the marijuana-based drug), the triple cocktail of ativan, haldol, and Benadryl as needed (this cocktail is effective but puts you to sleep - probably why it is so effective). We also added IV fluids to help with the dehydration, although we started out with too much fluid which caused her electrolytes to be off. She passed out and we had a two-night stay in the hospital.
Effects:
We are now dealing with the cumulative effects of the drugs. Kara's appetite
would be gone for the week of chemo, and she gradually worked up to eating
almost nothing for 2 - 2ý weeks. The Marinol (also used as an appetite stimulant)
helped with the appetite, but any volume of food or liquids would come back
up. I finally realized that she needed to sip on food shakes and water throughout
the day rather than try to eat a full meal - one swallow every 30-60 minutes.
Boost Plus has 360 calories in 8 ounces and 10 mEq (milliequivalents) of
potassium, the most I was able to find. She manages to drink about one bottle
a day. I can tell that getting some calories has helped because her weight
stabilized and is no longer dropping. Solid foods are slow to come back,
and then they must be in small amounts and nothing greasy or spicy.
The IV fluids have kept Kara from getting dehydrated, which can make the nausea worse. She had blood transfusions after the last two cycles, and her hemoglobin dropped to 7.4. She would have to take potassium supplements - horse pills that are hard on the stomach - after every dose of cisplatin. Start eating foods with lots of potassium.
Other effects include neuropathy (tingling in the hands and feet), tinnitus (ringing in the ears), and hearing loss. Kara's neuropathy started with some minor tingling in the hands and feet after five cycles. It got much worse to the point where she could hardly walk or use her hands. Only time can repair neuropathy, but Neurontin helped with the pain and allowed Kara to walk without pain. After 6 months, her neuropathy has improved but is still very noticeable. The hearing loss and tinnitus is noticeable but mostly annoying. Closed captioning is always on, and conversations with a lot of background noise are difficult but manageable.
Carboplatin/Irinotecan
Matt's Experience
Matt, a YCS board member, submitted the following experience about his wife
Kara:
Drugs: carboplatin and irinotecan
This drug combination was much easier on the stomach than the cisplatin and etoposide. The nausea is easily controllable with Aloxi, but the diarrhea always starts up about 2-3 days after the irinotecan but is usually controllable with Imodium A-D. About 3-4 days after the carboplatin and irinotecan, Kara was wiped out for a couple of days and needed to rest a lot. After only two cycles of this combination (and eight of the cisplatin and etoposide), her white-blood-cell counts got too low, and chemo was stopped for almost two months to give her bone marrow time to recover.
Methotrexate
Michelle's Experience
Michelle, a fellow Young Cancer Spouse, submitted the following experience
about her husband Chris:
Drug:Methotrexate
Once a week for three weeks.
This drug required inpatient hospitalization for 24 hours so doctors could monitor the levels in Chris' blood prior to release. He was also was given fluids concurrently as there can be effects on the kidneys from this drug.
For three days after release, there is a 'recapture' drug that is taken called leucovorin [link to http://www.atdn.org/access/drugs/leuc.html] which is on a six-hour schedule. IT IS IMPORTANT TO TAKE THIS DRUG AS DIRECTED AND ON TIME. Once, Chris took his dosage a few hours late, and he ended up with a HORRIFIC acne break out. I had never seen acne that horrible before as his entire face and back had broken out.
Nausea was tolerable and treated with Zofran. The biggest side effect was mouth sores. Sometimes these can be severe and might appear down the throat or other mucus membranes. We did not really find much to combat these.
Ifosfamide
Michelle's Experience
Michelle, a fellow Young Cancer Spouse, submitted the following experience
about her husband Chris:
Drug: ifosfamide
Many people use Ifosomide and are very successful with it. While we only used this drug once, I have to stress that Chris experienced a severe ATYPICAL reaction: Ifosfamide-induced encephalopathy. It was very scary. His cognitive ability diminished over a 24-hour period to where he was hallucinating and, in the end, totally out of touch with reality. He became aggressive and needed to be put into four-point restraints after having bit a nurse. We nearly lost him with dropping blood pressure at one point. When doctors finally made the diagnosis of the encephalopathy, they administered methylene blue as an antidote, and we saw improvement over the next 48 hours.
Unfortunately, we were not completely out of the clear. Chris ended up with the most horrible mouth sores he had ever experienced. The sores were in his nose and down his throat, and he could not even swallow his own spit - he had a suction tube next to him at all times. Doctors kept him sedated most of the time with morphine. Also during this time, Chris experienced unexplained tachycardia. His heart-rate levels were up over 150 for a week or more. Doctors had a very difficult time getting this under control. With all of this, Chris was hospitalized and in and out of ICU for about 6 weeks.
5-FU with leucovorin
Greg's Experience
Greg, a YCS board member, submitted the following experience about his wife
Stephanie:
5-FU is an old cancer drug used to treat many different cancers. In most patients, the side effects are generally mild with limited hair loss, and maybe some nausea or intestinal distress. For Stephanie, it was much worse than that. She would get the combination of 5-FU and leucovorin (a vitamin that makes the 5-FU more effective). After the first round of chemotherapy, she began to experience extreme nausea and vomiting. That would last for about two weeks, and then she would recover for two weeks until she started the next round. Her doctors tried many different drug combinations, including steroids, to counteract the nausea, but nothing seemed to manage it completely.
During that time, Emend was introduced onto the market. After finding out about it, we suggested to her doctor that Stephanie try the new drug. By now, it was Stephanie's last round of chemo, but they did try it, and it was a miracle drug. For that round, she had minimal nausea and no vomiting! This experience shows that you are your spouse's best advocate, and it's impossible for the doctors to know about everything.
Herceptin
Matt's Experience
Matt, a YCS board member, submitted the following experience about his wife
Kara:
Drugs: Herceptin - weekly
So far we have not encountered any adverse effects from this biological
therapy. Kara gets her heart tested every 3-4 months since this drug can
cause some reduced heart function for a small portion of patients.
Chemotherapy: Rituximab
Karen's Experience
Karen, a YCS board member, submitted the following experience about her
husband Mark:
Drugs: Rituximab (Rituxin) - varying frequencies
Mark tolerated rituximab very well. We found that he was very sensitive
to the full dose of Benadryl, however, which is given to prevent reactions.
The nurses started giving him the half dose of Benadryl (either for rituximab
or for blood transfusions) because he was sometimes kind of hard to wake
up at the end of the infusion, which was at least a couple of hours long.
That worried the nurses as well as me. Thankfully, the half dose of Benadryl
seemed to reduce the likelihood of reactions while allowing him to wake
up more by the end of the infusion.
Chemotherapy: CODOX-M-IVAC
Karen's Experience
Karen, a YCS board member, submitted the following experience about her
husband Mark:
Drugs:
CODOX-M-IVAC, a sequence of: cyclophosphamide, cytarabine, doxorubicin,
etoposide, ifosfamide, leucovorin, methotrexate, vincristine
In general terms, this is a very strong, tough chemo regimen. However, it is highly effective for many cases of Burkitt's lymphoma - considered a death sentence 10 or so years ago. Sometimes the entire sequence must be given in the hospital, including staying in the hospital between components.
Mark almost immediately became "loopy," cold, tired, etc. when he started the first doses. Getting chemo directly into the spine (and thus, brain) greatly contributes to chemo brain. The time in-between the first CODOX and M (methotrexate), we stayed with my in-laws. Mark slept with piles of blankets on him since he was absolutely freezing, and he could barely get up at all between the extreme fatigue and the headaches from the lumbar punctures. In the first weeks, he didn't eat much at all, and he lost a lot of weight. Mark was extremely nauseous at times, but he didn't throw up (which makes no sense). The methotrexate was particularly difficult to deal with - he was very nauseous, got mouth sores, and even hallucinated a bit at times.
The amounts of steroids he was on during the treatment made him break out (increasing the risk of a route of infection) and start swelling in his face. Some of the chemos caused mouth sores, making eating extremely difficult, particularly because Mark was not a fan of "squishy" foods like oatmeal, pudding, or soups. "Magical Mouthwash" (which contained lidocaine and other topical numbing drugs) applied shortly before eating greatly helped Mark's ability to get down at least some food and drink with less pain.
Chemotherapy: Neulasta/Neupogen
Matt's Experience
Matt, a YCS board member, submitted the following experience about his wife
Kara:
Drugs: Neulasta
No problems at all, not even bone pain.
Karen's Experience
Karen, a YCS board member, submitted the following experience about her
husband Mark:
Drugs: Neulasta/Neupogen
Neulasta can cause bone pain over and above Neupogen. Mark only got Neulasta
once, from what I remember, and the pain was bad. My mother (who had breast
cancer) got Neulasta once or twice, and it caused her terrible pain, too,
mainly in her hips and spine. Neupogen alone caused significant bone pain
for Mark. The amount of bone pain probably varies depending both on the
individual and on the dose of the drug. I gave him many of the shots. Pre-filled
shots are easier to deal with, but even drawing up the drug from a vial
isn't so hard when you're shown how to do it and get the hang of it. Sometimes
the shots hurt Mark but not always and not usually too bad. Make sure to
clean the area thoroughly and rotate the injection site so you don't accidentally
cause complications.
If the pain is really bad, make sure your spouse gets strong narcotic painkillers - Tylenol won't do squat to help bone pain, usually. Always insist on pain management!
Chemotherapy: Procrit
Karen's Experience
Karen, a YCS board member, submitted the following experience about her
husband Mark:
Drugs: Procrit
Procrit seemed to help with raising Mark's red-blood-cell counts, though
it takes a few weeks, longer than Neupogen for the white cells. Procrit
caused some bone pain, though less pain than Neupogen. Injection-site discomfort
was similar to Neupogen.
Matt's Experience
Matt,a YCS board member, submitted the following experience about his wife
Kara:
Drugs: Procrit
Kara received weekly injections of Procrit. So far they have not resulted
in a quick rebound of her red blood cells. Her bone marrow may be too "wiped
out." We have not experienced any adverse side effects.