A question I can finally help with. First a little history. My 15 yr. old daughter was dx 12/07/06 with stage 3, grade 3 immature teratoma. A very rare childhood ovca. The tumor was the size of a watermelon, and acities had her looking as if she was 8 months pregnant. Docs removed the tumor, her rt. ovary, peritoneal linings, and lymph nodes. She started on BEP 01/02/07, scheduled for 4 rounds. The rounds consisted of 3 1/2 hrs. per day for 3 straight days as an inpatient followed by 2 wks. rest in between the chemo rounds. Side effects: She had some degree of nausea during chemo treatment and a couple of days after treatment. Controlling the nausea took a while to figure out. The final combination of anti-nausea drugs that worked very well for her was amen, zofran, ativan, and I believe there was some steroid mixed with the zofran. At home only zofran was used. For Ashley, this was the worst physical side effect. Hair loss is inevidable. It happened to Ashley resulting in her shaving her head during her second round of chemo. Some dry and cracking skin on feet and hands also occured. This was mild though. That's it. No other side effects that can be visually seen. Ashley still has to go for scans to see what if any damage was done on the inside due to BEP. There are other side effects that were discussed, but did not materialize for Ashley. I hope this helped out. Any other questions, please ask. I am here to help anyone I can defeat this monster in any way that I can.
BEP is the chemo cocktail prescribed to Ashley during her battle with ovca. The B stands for Bleyomyacin, the E stands for Etoposide, and the P stands for Cisplatin (platinum based). This chemo is most often used to treat testicular germ cell cancer. Because it works so well for testicular germ cell cancer and because ovarian germ cell cancer is soo rare, they use it as first line treatment for ovarian germ cell cancers. Bleyomyacin tends to be tough on the cardiovascular system, Etoposide tends to be tough on the pulmonary (lungs) system, and Cisplatin is real tough on the renal (kindey) system. BEP carries a very slight risk of causing lukemia, which is considered a side effect if it happens. This occurance is truely rare in the abstracts that I have read. The BEP treatment is very harsh on blood cell counts. From the first treatment on, Ashley always ended up nuetrapenic and often developed a fever after treatment causing her to go back into the hospital for 4 days. There is some risk of some kind of pnuemonia accociated with this chemo treatment. After Ashley's second treatment she became anemic, forcing her to have blood transfusions. Platlets also dive, and there is some concern for bleeding, especially around the gums and mouth. Blood counts do not always recover quickly resulting in posponement of treatment in young children to blood cell stimulation injections for older patients. Patients on BEP cannot have anything (like dental work) done that may cause bleeding without taking a high dose of antibiotics just prior due to the risk of bleeding and blood infections. Any temperature over 100.4 required hospitalization, antibiotics, and chest x-rays. The prognosis for ovarian germ cell cancer was not very good until platinum based chemo was introduced. The cancer responds extremely well to BEP and prognosis tends to be good in low grade and low stage germ cell cancers. Please feel free to ask any questions you may have, I will try my best to answer them.
Take care and God Bless,
I am a member of the National Ovarian Cancer Coalition (NOCC) here on Long Island. Our main mission to raise awareness thru education. There is talk of starting a program for teens. I would love to be able to talk to you further about this. I doubt if it is something that Ashley will embrace (I can't say that I would at 15 either) but, maybe something we can pick your brain on.
Please email me at ***@**** (I don't want to post an email address that has my full name in it, that I will do when I can email you privately).
How truly unselfish of you to put all this out there for us to read and understand. I had no idea her treatments were so harsh...I have a whole new level of respect for her now!
I think it's great that your willing to answer any questions that may be out there about this rareity...
"Sometimes winning isn't what it seems. Sometimes the knowledge gained from the battle is most precious of all. And sometimes the victory is simply a deeper love of those who shared the fight"
Thank you so much bob. Even though side affects are different for everyone it gives me comfort to hear it first hand from some one else. When I had my surgery on March 1, 2007, I was only supposed to be in the hospital for 3 days but I was very nauseated from the meds and ended up staying for 7 days. I tried all the nausea meds and nothing was working. I fear that when I start chemo next week the same thing will happen but hearing that Ashley took a combination of nausea meds helped her it might work out well for me too. Oh and you made a comment about not going to the dentist, well thank goodness because I had a dental appt. next week during my first week of chemo, I'll be sure to cancel that! Tomorrow I go to get my port put in and Thursday I go for my chemo teaching. I imagine that I will start chemo on Monday. Did Ashley have a lot of fatigue or lack of energy? Also did she have side affects right away or during her first treatments? I
Glad I could help. Feel free to ask anytime. You are right in that side affects are different in everyone, for sure. First the port. Should be pretty simple in comparison to the first surgery. Ashley's port surgery lasted about 2 hours with no complications. She was awfully sore afterwards though. In fact, she said the incision was more painful that the major abdominal incision/surgery she had to remove the tumor. The abdominal incision was 12" long, where the port incision was only about 4" long. I think maybe the port surgery was more painful due to the fact the the after the tumor surgery she was on an epideral for 4 days, which allowed some time for healing before she felt the pain. The port incision was outpatient and when the initial anethesia wore off, the wound was pretty fresh. Not to mention, they insert it in an area were there is alot of arm movement. Good luck with the port, should be a piece of cake (comparatively speaking of couse). The dental work, I mean if you need to have it done, It can be done. Ashley had to have her braces removed for chemo. This happened after her first round. She had to take 2000mg of antibiotic (I believe it was amoxicylin) one hour before having it done. So if you need to see the dentist, talk with your doc., should be no problem though. Nausea is the tough one. For Ashley nausea happened immediately, on day one of the first treatment. Although all of the chemo meds contibute to the nausea, it's the cisplatin that I believe was most responsible. Expect a metallic taste in your mouth. We were also advised not to feed Ashley any of her favorite foods as they might cease to be her favorites if she is sick or gets sick while eating them. Something to keep in mind. The various smells in the hospital would trigger nausea. Ashley had a problem with the plastic plates/trays that hospital food was served on (and probably the hospital food itself), therefore no hospital food or trays were allowed in the room and we actually posted a note on her door. Of course this led to ordering out from local restaurants. Remember to eat! Eat whatever you can. Ashley did not eat much during treatment, but had a pretty good appetite afterwards. Again, it may take a little while to dial in the exact anti-nausea meds. that control the nausea for you. Be patient. For Ashley, the combo wasn't discoved unitl the end of round 2 of chemo. Remember, there are alot of anti-nausea med. combos out there, so if what they are giving you isn't working well, tell the nurses and have them give you something else. They were also giving Ashley some sort of amnesia meds. This was so that when she was having a tough time of it, she would not remember in full detail how tough it really was. This was done so that she did not associate being sick with going to chemo treatments, which may have psycologically made her sick before treatments even started. Benedryl (spelling??) was also used to counter act any alergic reaction from the Bleyomyacin. Watch for sleepiness (probably will be welcomed though) and for Ashley Bengdryl gave her muscle spasms like restless leg syndrome. Nausea was the only side affect that occured immediately. Hair loss during treatment 2. Dry skin after treatment 2. Ashley did have some fatigue especially late into the treatments. As they go on the more fatigue is felt. Probably due to anemia. The fatigue was not bad enough to totally knock her out. In fact she was still running a mile or two on the treadmill, going to school, and socializing with her friends. More like just early to bed, late to rise. Watch for fever without symptoms. After round 2, one morning Ashley said her throat was alittle scratchy, 1 hour later the fever. After round 3, Ashley said a little bit of a sore stomach, 1 hour later the fever. In the hospital with the fever, she felt fine, just had a fever. Bactrum (spelling??) was the antibiotic used to combat the possible pnuemonia that is associated with this treatment. Also, not sure if related to treatment, but after treatment 1, Ashley developed her first urinary tract infection. BEP is a very aggressive treatment. With Ashely, they planned the treatments with just enough time in between each treatment for the blood counts to recover, and just when they did (and she started to feel pretty ok) they hit her with another treatment. This will wear on you. The good is that it is so fast, it's almost a blur and over with before you know it. Ashley had 4 rounds, started in early Jan. ended in early March. Fast, fast. Be mindful when approaching your last treatment of what your body has been through. I made the mistake of thinking the last one would be the best, because it was the last. Wrong, set myself up for big disappointment. Ashley's last treatment was the worst on her. Some doctor errors with anti-nausea meds. didn't help, but she was pretty wiped out by the last. Couldn't even make the cyber party these fine ladies threw in her honor. One more thing, watch out for constipation. If you can, take stool softeners as preventive maintenance for this problem. Ashley had a case of it once, and almost resulted in emergency room visit. Anything else please just ask. Praying for your success and keep us informed.
You know what, you say the nicest things and have been soo nice and supportive it almost seems like I have known you forever. I truely thank you. And the things you sometimes say have such deep meaning and make so much sense that it forces me to suck in a deep breath, shake my head and just say wow! You are a truely amazing woman, a true fighter, and a champion among the women on this post. I was sorry to hear you are having a tough time of it lately. Hopefully, pay now be rewarded later, huh?? Enjoy your son's birthday party, I'll bet it will be a smashing success!!! Oh by the way, I've known a few taurus folks, you do have your hands full..lol. It's a good full though, and a blessing.
No problem, if there is anything I can answer for you, please feel free to ask. Ashley is doing well, in fact came in first a few times already this year running cross country 5K. December she will be 2 years out from diagnosis and in March she will be 2 years out from treatment with no recurrance. So far she has been dancing with NED. Her last scan in Sept. showed a liver lesion that was not previously there. Her tumor markers are stable so hopefully this is nothing but a cyst. Her next scan is in Dec. to scan her liver. All in all, she is doing well and we are blessed for that. Some of the other fine people on this forum are not quite so lucky unfortunately. I thank God every day she is NED. Good luck with your treatment and fight the beast hard. You will be sucessful! Any other questions, just ask.
Hi - I just came across these postings when I was looking for something else, but I wanted to share in case it helps anyone.
I was treated with BEP almost 20 years ago for an ovarian germ cell tumor (dysgerminoma). I was 15 at the time. I have been mostly healthy since my treatment concluded - the only problems I have had are from adhesions, so since the initial surgery to remove my tumor (football sized), right ovary & tube, and nodes, I have had 4 other surgeries. I am also married and have a daughter who will be 3 in May. I will celebrate 20 years of being cancer free next year (2010). Best of luck to you!
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