Aa
daughter diagnosed
my 24 year daughter had an ovarian tumour for which she underwent surgery in which they successfully removed the tumour as well as her right ovary. her lymph nodes were also removed as a precautionary measure although they were not affected. her biopsy reports show that the tumour as well as the areas surrounding it were non-malignant. her left ovary and uterus too were non-malignant.
however, our doctors tell us that because the tumour was a grade 3, immature teritoma measuring 13x10x6, she will have to undergo chemotherapy. They suggest a PEB regimen consisting of 3 cycles each of 8 days-with each cycle following the other after a 21 day gap.
could you please help me to better understand the implications of following such a regimen? what are the side-effects and what are the alternatives?
please help
however, our doctors tell us that because the tumour was a grade 3, immature teritoma measuring 13x10x6, she will have to undergo chemotherapy. They suggest a PEB regimen consisting of 3 cycles each of 8 days-with each cycle following the other after a 21 day gap.
could you please help me to better understand the implications of following such a regimen? what are the side-effects and what are the alternatives?
please help
Sorry it's taken me so long to respond. I try to check the forum a couple of times a week. I had immature teratoma grades 1-2 stage 3A in Oct. 2005, when I was 26 years old. My doctor wanted to believe it was a dermoid (mature teratoma-benign form of immature teratoma) before surgery, but they found it to be malignant. I had right salpingo oopherectomy only. I got several opinions from different GYNONCs and from different pathologists. I made the hardest decision that I ever have had to make in my life and decided not to do chemo. Most of the doctors that I saw recommended chemo, but one doctor who wrote a textbook chapter on immature teratoma told me I could get by without chemo and just be monitored. If I had a recurrance, I could have chemo then. So far so good. I have had several cysts on my remaining ovary, but none have been cancerous. I had to have another surgery at the end of March last year to remove a benign serous cyst, and was scared because the only way they could confirm it wasn't cancer was to have surgery. It has been very emotionally draining for me and my husband to deal with all the cysts that could be cancerous, but I am happy to say that my last ultrasound in August showed no cysts. I also had a pap test in November and my GYN did a pelvic exam and didn't feel any abnormalities. I don't have to go back to the OBGYN until May. I only see the GYNONC if I have a cyst that looks like it could be cancerous. If my tumor had been a grade 3, I think I would have done chemo, though, because they supposedly grow faster than a lower grade. My advice would be to definitely get at least a second opinion on the pathology and by a GYNONC for the treatment plan. They may come to the same conclusion, but at least your daughter will have the peace of mind that she has gotten more than one person's take on the pathology and more than one person's plan for treatment. Immature teratoma is pretty rare so pathologists don't see it a lot. This can either mean that it's easy to identify because it's not seen that much, or that it could be hard to judge the grade because that pathologist may not have ever seen it before. I wish you and your daughter all the best in dealing with this. You will be in my thoughts and prayers. If you have any questions that I can answer, please feel free to contact me.
Take care,
Glenda
Take care,
Glenda
Hi T,
I'm not sure what mynah means by immature terratoma not being malignant. Immature terratoma is malignant, it is ovca. Mature terratoma is the benign version. Stage refers to the spread of the disease and ranges from 1-4. Grade refers to how differentiated the cells are from normal and ranges from 1-3. Usually the higher the grade the faster the cancer grows but the more responsive to treatment.
Take Care and God Bless,
Bob
I'm not sure what mynah means by immature terratoma not being malignant. Immature terratoma is malignant, it is ovca. Mature terratoma is the benign version. Stage refers to the spread of the disease and ranges from 1-4. Grade refers to how differentiated the cells are from normal and ranges from 1-3. Usually the higher the grade the faster the cancer grows but the more responsive to treatment.
Take Care and God Bless,
Bob
I am so very to hear of your daughters illness, I hope that the chemo treatment does well for her, so she will be well soon.
I have a question for you, I hope you don't mind me asking. What exactly does it mean when you say "grade 3" but not malignant? Does that refer to the size of the tumor?
Wishing you and your daughter the best,
Thank- you.
T
I have a question for you, I hope you don't mind me asking. What exactly does it mean when you say "grade 3" but not malignant? Does that refer to the size of the tumor?
Wishing you and your daughter the best,
Thank- you.
T
I am sorry to hear about your daughter, as a Mother myself with a daughter going through chemo right now, I know somewhat of what you are feeling. It hurts like he-- doesn't it? Be her friend and confident, let her talk out her fears and frustrations with you. Bob has given you a big head start on understanding about what has hit your family. I am the researcher for Leslee and anything I can find that will help her I let her know and then she passes that on to her onocologist. As trained as they are, it seems with so many new things coming along for OVCA that we have found that they don't know everything. Good Luck on your journey and I understand that with this new chemo that your daughters chances are very good. Marty
Hi,
My 15 yr. old daughter was dx with stage 3, grade 3 immature teratoma and 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 so 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 (kidney) system. BEP carries a very slight risk of causing leukemia, which is considered a side effect if it happens. This occurrence is truly 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 pneumonia associated with this chemo treatment. After Ashley's second treatment she became anemic, forcing her to have blood transfusions. Platelets also dive, and there is some concern for bleeding, especially around the gums and mouth. Blood counts do not always recover quickly resulting in postponement 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. Keep in mind the side effects are different in everyone, for sure. I would advise you to have a port installed which 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 that after the tumor surgery she was on an epidural for 4 days, which allowed some time for healing before she felt the pain. The port incision was outpatient and when the initial anesthesia wore off, the wound was pretty fresh. Not to mention, they insert it in an area were there is a lot of arm movement. Should be a piece of cake though(comparatively speaking of course). Nausea is the tough one. For Ashley nausea happened immediately, on day one of the first treatment. Although all of the chemo meds contribute to the nausea, it's the cisplatin that I believe was most responsible. Expect a metallic taste in your mouth from the cisplatin. 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 discovered until 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 psychologically made her sick before treatments even started. Benedryl (spelling??) was also used to counter act any allergic 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 occurred 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. 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.
Take care and God Bless,
Bob
My 15 yr. old daughter was dx with stage 3, grade 3 immature teratoma and 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 so 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 (kidney) system. BEP carries a very slight risk of causing leukemia, which is considered a side effect if it happens. This occurrence is truly 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 pneumonia associated with this chemo treatment. After Ashley's second treatment she became anemic, forcing her to have blood transfusions. Platelets also dive, and there is some concern for bleeding, especially around the gums and mouth. Blood counts do not always recover quickly resulting in postponement 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. Keep in mind the side effects are different in everyone, for sure. I would advise you to have a port installed which 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 that after the tumor surgery she was on an epidural for 4 days, which allowed some time for healing before she felt the pain. The port incision was outpatient and when the initial anesthesia wore off, the wound was pretty fresh. Not to mention, they insert it in an area were there is a lot of arm movement. Should be a piece of cake though(comparatively speaking of course). Nausea is the tough one. For Ashley nausea happened immediately, on day one of the first treatment. Although all of the chemo meds contribute to the nausea, it's the cisplatin that I believe was most responsible. Expect a metallic taste in your mouth from the cisplatin. 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 discovered until 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 psychologically made her sick before treatments even started. Benedryl (spelling??) was also used to counter act any allergic 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 occurred 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. 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.
Take care and God Bless,
Bob
I am so sorry. I know this is a scary time for you and your daughter. You have a lot of tough decisions to make and the best thing to do is stay as calm as possible and do your research. Below is a link to a post concerning a young girl with the same thing. There are responses that talk about the advantages and disadvantages of treatment by those who had to make that same choice, so I think it would be very helpful to you.
http://www.medhelp.org/forums/OvarianCancer/messages/7618.html
I am going to send an email to someone whose daughter is going through this. I will ask him to come on and reply to your email. He is a great guy and helps us out tremendously with his encouragement and research. Normally, we would see his reply by now, as he is very helpful that way, but I have not seen him post for awhile so I am hoping he will be checking in soon.
Good luck to you and your daughter. Your family will be in my prayers.
Jan
http://www.medhelp.org/forums/OvarianCancer/messages/7618.html
I am going to send an email to someone whose daughter is going through this. I will ask him to come on and reply to your email. He is a great guy and helps us out tremendously with his encouragement and research. Normally, we would see his reply by now, as he is very helpful that way, but I have not seen him post for awhile so I am hoping he will be checking in soon.
Good luck to you and your daughter. Your family will be in my prayers.
Jan
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