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178783 tn?1197300099

Questions about BEP Treatment

High all, First how about some good news, sounds like you all need some. Ashley's party on St. Pat's day was nice. Several of her friends came over to enjoy the day with her. Unfortunately My wife and I got kicked out of the house(it seems that parents hanging around in their own house during a teen aged get together is a terrible thing for a teen to endure, lol). That's okay though, we have a nice heated out building. More good news, so far no fever, hoohray!! The past two times it showed up 9 days after treatment, on Sunday when her blood counts supposedly were at their lowest. It is my understanding that her body should begin to make blood cells again starting on day 10 after treatment. Now my question, how come I do not hear of anyone on this site receiving BEP (Bleyomyacin, Etoposide, Cisplatin), which was Ashley's chemo cocktail. So just wondering why, has anyone heard of this cocktail, and could it be an option for those who are not having success with their current regiment.

Take care to all,
Bob
17 Responses
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178783 tn?1197300099
Hi Chantelle,

My 15 yr. old daughter went through 4 rounds of BEP chemotherapy.  She ended her treatments March 8, 2007.  So far she is NED!  If you have any questions regarding BEP, I would be more than happy to help you out in any way that I can.  

Take Care and God Bless,
Bob
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Avatar universal
Hi, i would just like to say i am due to start BEP next week. I was diagnosed with having a rare type of ovarian cancer,  germ cell cancer, I have just turned 21 and it is apparently more common in younger women. I have had my right ovary removed and i am now having the chemo as a preventve measure to 'clear my system out'. Dont really have any advice as i have no idea of what to expect, except what i have read on the net.
chantelle
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Avatar universal
Hi, my name is Susanna I am 21 years old and I have recently been diagnosed with dysgerminoma, which is a rare type of ovarian cancer. A few weeks ago, I had a surgery to remove a 5 lb tumor along with an ovary, luckily I am only a stage 1a. I am going to start chemo in about a week and it will be BEP or another combination of those drugs. I was just wondering what kind of side affects that others have had who have been treated with this kind of chemo and how they felt during it. Did anyone have full hair loss? I just want to know what to expect before I start. Any info to prepare me before chemo will be greatly appreciated! Thank!!
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Avatar universal
I'm sorry it's taken me so long to respond. I've had to make some trips to the pediatrician lately for my son and have had my post-op appointments, etc. My son is also at the age where I can't turn my back on him for one second and I haven't had a chance to be on here as much as I normally am because I have to wait until he is asleep or my house may be destroyed.
I was told that cancer spread to the abdominal wall. The two doctors who did my initial surgery said that they thought that they got everything they could see, but I could possibly have cancer seeding in my peritoneal lining that was too small for them to see. They didn't give me the option of foregoing the chemo (well, as you said,"strongly encouraged" me to do chemo). It wasn't until my dad found a gyn/onc in OH, that the possibility of me not doing chemo was mentioned. That doctor has had more experience with immature teratoma than all the other ones that I saw combined so I went with his opinion. My pathology report at OSU also came back as the grade only being grade 1. I was told that the grade was also very important in addition to the staging because the higher the grade, the more aggressive they consider the cancer. If the grade of my tumor had only been grade 1, there are many doctors out there that would agree that I didn't need chemo unless I had a recurrance. They finally sent my pathology slides to John Hopkins, where they graded them a 2, just like all the other pathologists. The gyn/onc in OH told me that in reality the grade was probably in between a 1 and a 2 and that he did think that I could just be monitored, if that was what I wanted. He also told me, though, that if I ever decided that I wanted to do chemo, that it wouldn't be entirely inappropriate. Obviously, if they find cancer when I go in for my laparoscopy on Wed., then I will have to do chemo then, but my tumor markers look good and according to the MRI and the last ultrasound I had, the cyst hasn't grown in two months so that is a really good sign that it probably isn't cancer. Since I live in NC, I had the gyn/onc in OH review all of my information and recommend a gyn/onc here (the closest being an hour and a half away from where I live). The gyn/onc here that I'm having do my surgery hasn't cast his opinion on whether or not he thinks that I should have had chemo, but he and the doctor in OH agree that if he finds cancer this time, I will definitely have to do chemo.
If you have any other questions for me, please feel free to post. I probably won't be on here for a little while because of my surgery on Wed., but will probably be on before and after, depending on how I feel. (Plus I will have help with my child)
God bless you,
Glenda
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178783 tn?1197300099
Hi Glenda,

Thank you so much for the info. And thanks to everyone else, of course. We never were given the option of foregoing chemo(well, you always have an option)but it was STRONGLY suggested that chemo was the way to treat. I think that it was not so much the grade, although that was bad enough, but the staging and where it had spread. See with the watermelon sized tumor on the rt. ovary that they removed, the cancer had also spread to the peritoneal linings. These were also removed. There was a "suspicious" white spot on her liver about the size of a grain of rice. This concerns me. The surgeon did not want to remove it because he would have had to cut her breast bone open and open her chest cavity to do so. I'm not sure if he was no "suspicious" enough to cause that drama, being they already cut her from her hair line to her diaphram or if he kinda knew that this was going to be cancer and chemo would be prescribed and maybe the chemo would take care of it. Anyway, very concerned about the "suspicious" white spot. If that was in fact cancer, her stage would then be stage 4. From what I understand staging has alot to do with survival. Stage 3 not much better but better than stage 4. I also have the mind game of cysts on the remaining ovary with Ashley. She had a scan done at the time they put her medi-port in and it showed several cysts that CT scan folks did not like. The surgeon said he belived these to be "normal" cysts. She was also menstrating at the time. But I am very scared for the future of her remaining ovary. You have to be, there's only one left and if something happens to it...well you know. You were stagged 3, may I ask where the disease had spread? Anyhow thanks for the info. and fingers on both hands crossed for you. I have other questions and there will be many more so I hope all of you can stay tuned and provide me all the wonderful feedback that I have come to rely on through this website.
God Bless to all,
Bob
Helpful - 0
Avatar universal
Hi Bob! As I think I have told you before, I had immature teratoma grade 2 stage 3A in Oct. 2005 at age 26.Immature teratoma IS extremely rare and when it occurs, it's usually in women younger than my age. One gyn/onc told me that this is the type of cancer that the pathologist goes and consults a textbook before he renders his opinion. I had 4 pathology consults and saw 3 different gyn/oncs after my surgery. 2 of them recommended BEP chemo to me. It is an aggressive treatment, but supposedly the kind of cancer that Ashley and I had is fast-growing so it warrants that type of treatment. I did see another doctor in OH that wrote a textbook chapter on immature teratoma. He said that I could do BEP chemo or that I could just be monitored because of the imaging that we have available today and because chemo is so effective for that type of cancer, even in recurrance, that it would completely wipe it out. I chose not to do the chemo and have been monitored ever since. I have developed cysts on my remaining ovary. One cyst, after growing to 6 cm, shrunk and eventually dissolved. The one I currently have grew to 6 cm and has stayed the same size for over two months now. My tumor markers look good and I'm having surgery to remove the cyst a week from today. Please keep your fingers crossed! Anyway, there were studies that were done at Detroit Children's Hospital and at St. Jude Children's Hospital that support children and adolescents with immature teratoma foregoing the chemo and saving it for a recurrance only. Deciding to do or not do chemo was probably the hardest decision I have ever had to make. I still second guess it sometimes. I think, though, that if my tumor had been grade 3 (as Ashley's was, if I remember correctly), that I would have done the chemo. Especially because I am older, and all the studies that support not doing chemo were done on adolescents and children. Also, it has been an awful mind game with the cysts that I have had, even though I am told that an immature teratoma recurrance on the remaining ovary is also very rare (like 5%, I think). I am actually more concerned with losing my ovary than I am having a cancer recurrance. If I had a cancer recurrance in my abdominal cavity, but not on my ovary, I could keep the ovary and do chemo, thus still sparing my fertility. According to the most skilled gyn/onc that I worked with, immature teratoma is very responsive to chemo and if I had had chemo, he told me that I would have had a 99% chance that I would never deal with a recurrance. I know Ashley's was grade 3 so I don't know how that would change the percentage, but I'm pretty sure of from what I know, the chance of recurrance would be very low. I hope and pray that Ashley never ever has to deal with this again! Best wishes to you! :)
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155056 tn?1333638688
Bob,

With this cancer you will find lots and lots of stats that do not mean much.  It is important to know that there are numerous different types of OvCa and each has a different outlook.  Ashley is considered to have a cancer that does recurr as often.

The important thing is, when she is done with treatment, it is time to live life and think about the what ifs.  Move forward and try not to worry.  

It seems that most of the people that post on this board have other forms of OvCa and are much older then Ashley.  While I have often heard of Taxol and Carbo being first line, Ashley is younger then the others, this could be the reason and/or I believe that they are using this chemo as "insurance".  Maybe they do not feel that Taxol is necessary.  

You will remain in my thoughts!!!!!

Pam
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Avatar universal
Don't have any advice about treatment........I'm still trying to figure out my own.  I just wanted to say I'm glad Ashley was able to enjoy herself.  Too funny that they kicked you out.  I remember those days.  Ashley is in my thoughts and prayers.  
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178783 tn?1197300099
Thanks stephers!  And thanks to everyone else for the information.  I still do not understand why nobody on this forum is on BEP.  Is Ashley's cancer that rare that nobody else on this forum has this type.  I would have figured that somebody would be having BEP as treatment considering all the fine folks on this forum, which is global.  Strange to me.  Some of you have stated that you have never heard of some of the components of BEP treatment.  I thought is sounded like others had the same cancer (stage 3, grade 3 immature terratoma) as Ashley.  I know there are several different treatment options that onc. can use, but nobody else doing BEP, strange.  Any other info on the recurrance question or BEP story shares would be appreciated.

Thanks again for everything,
Bob
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Avatar universal
Hi Bob, it sounds like Ashley is receiving excellent care and I think you have good reasons to be optimistic. It also sounds like the BEP treatment is the standard firstline for her. Carbo/Taxol is one of the standard firstline treatments for epithelial ovca which is probably why it is mentioned so often in this forum. Also remember that the CA125 is not accurate or reliable as a tumor marker in premenapausal women at all. (It is not totally accurate as a tumor marker in postmenapausal women either, just more reliable (and all they have as far as blood tests are concerned). Keep in mind that the success of the surgery of leaving nothing greater than 1cm is the greatest predictor of survival. It sounds like Ashley's surgeon achieved this. All things considered, it sounds like she has an excellent prognosis. All the best.
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135691 tn?1271097123
Hi Bob...when I googled BEP treatment, i came to a site that explained that this type of chemo combination was used to treat testicular cancer and a very rare type of ovarian cancer. So, I'm guessing that what Ashley has is very rare indeed - I don't believe anyone else here has this type of cancer...well, not that I've heard of. I also read that it tends to show up in young women under 18...
Obviously her doctors put her on the best treatment known for her specific type of cancer...good thing..hopefully it did the trick the first time!
I know how scary it is to wonder if she'll ever have to deal with this again...as the others have said, take it a day at a time. I guess it will always occupy a space in your mind, but hopefully over time, that space becomes smaller and smaller and it's not something you'll think about everyday.
Good job with the party...yes, I remember kicking my parents out of most of my get togethers...don't take it personally! I think every kid does that!
Take care,
Becky
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Avatar universal
Hi I just wanted to say congrats on whats happening with Ashleys it sounds very promising. Also regarding your questions on when to celebrate, my answer to you is everyday. Don't wait to find out anything, what you know right now is that your little girl is here today so celebrate today cause you never know what will happen tommorow. I am 27 and that is some advise that I wish my dad would take.
Anyhow the real topic here is Ashley's Ca125. I was not told what mine was either until I insisted on reading my chart. The reason they did not tell me about it was because it was a poor marker for my cancer. for example I think when I was diagnosed stage 4 carcinosarcoma it was in the 50's. now it is about 7. However at 9 and 8 I still had a tumor in my aortic lymphnode. Therefore it is a poor indicator of whether or not cancer is still present. I am guessing this is the case with your daughter as well. Well good luck with everything. I will pray for your family.
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113538 tn?1207621432
Once again, not an expert but as I understand it, germ cell cancers are the rarest of the ovarian cancers (epithelial cell being the most common, at 85% of all ovarian cancers, followed by stromal cell) and tend to occur in teenagers and young women. Supposedly, the prognosis for germ cell cancers is much, much better than for epithelial cell cancers.

God knows...How does one know how to feel from day to day once cancer enters your life? How does one prepare oneself for the possibility of reccurance while trying to live and enjoy life? Where is that line between optimism, realism and uncertainty? My experience in dealing with loved ones with cancer is that you just try to take it one day at a time, enjoying the good days and finding ways to cope with the bad ones.

I know that with ANY cancer the possibility of reccurance always looms (and that "possibility/uncertainty" is probably the biggest demon of all), but as long as your daughter is in remission I would take comfort from the fact that her prognosis, at least statistically, is very good. As far as "being prepared" for the worst, I don't know if that's even possible. I think as long as you know there's the possibility, you are as prepared as you possibly could be.

Hugs to you.
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178783 tn?1197300099
Thanks purrkat.  A question for all, I know there are several different forms of ovca.  Is Ashley's dx different from other germ cell cancers?? From the way it sounds on the forum there seems to be a high rate of recurrance in ovca.  Is it practical for me to prepare myself (and the family) for recurrance and then celebrate if it does not happen or I'm I in a doomsday mode. I'm not sure, but I'm awfully afraid that she will have recurrance.  We find out more on April 10.  This is when she will go and be evaluated for damage sustained from chemo as well as cancer screenings and scans.  Through this whole jouney, I have never been told of Ashley's CA 125 levels nor has any doctor even mentioned this. I have come to know CA 125 through this forum only (I think it is a blood protein cancer marker test, isn't it?).  Based on alot information posted by all the fighters on this forum, It would seem that I should in fact prepare for recurrance. Maybe I'm just prematurely freaking out a little, but something in head is telling me that I don't know the true nature of the dx and that there is every likelyhood of recurrance and worse.  

Thank you in advance for any thoughts and take care all,
Bob
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113538 tn?1207621432
Hi Bob,

I'm not an expert, but I did a little bit of research on this. It seems that BEP is the standard first-line treatment for the kind (and stage) of cancer your daughter had:

http://www.nci.nih.gov/cancertopics/pdq/treatment/ovarian-germ-cell/healthprofessional/allpages/print#Section_54

From everything I've read, the prognosis for her cancer (with treatment) is excellent.

Best wishes to you!
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178783 tn?1197300099
She actually finished it March 8.  She had four rounds of this treatment, lasting 3 1/2 hours per day for three straight days.  Two weeks off between each round.  I also thought it seemed like a very aggressive treatment.  She was dx with stage 3, grade 3 immature terratoma of the rt. ovary. The ovary was removed.  The cancer had spread to abdominal linings which were also removed. Her lymph nodes in her pelvis and back were also taken and were cancer free.  The doctors told me that they believed that she was cancer free after surgery and that the chemo was just a preventive measure just to insure that there were no rogue cancer cells floating around.  Based on the aggressiveness of the treatment I'm wondering if in fact they are telling me the whole story here or whether they are holding back so that all of us remain on a positive mindset.  I am concerned that her situation is more serious than they are letting on.  Her side effects were not too bad, some nausea, fatigue, and hair loss.  Some dry skin areas, but the strange one is that it tinted her teeth yellow.  Not quite sure why.  Any other opinions on BEP would be greatly appreciated.  I'm not sure if I'm being overly suspicious being that chemo is over so now time to worry about recurrance or if I'm thinking correctly that the treatment seems very aggressive for "preventive measure".
Take care and thanks,
Bob
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Avatar universal
Hi Bob...Glad to hear that Ashley is enjoying life... good news. Re the combination she is on. I've heard of this one, and from what I've gathered, it's quite harsh. Has Ashley actually started it yet? I hope it works well for her, without too many side affects. I hope your wife is feeling fine again too.
Wishing you all the best....Helmar...
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