Dysgerminoma

rachel5 said:

hi joanna i also at the age of 28 was diagnosed with dysgerminoma. I had a complete hysterectomy with apendix and lymph nodes and omentum removed also. other stuff too i think. I was staged at a 1a. My onc claims I do not need chemo or radiation. We are playing the wait and see game. My tumor was 13.8cm! I also was told that my cancer was extremely rare, but with very high cure rate. write me if you would like..rachel5@epix.net

joeyb said:

my wife is 33 and just finished 4 cycles of BEP for dysgerminoma that went to the bone. It was hell but se made it through. Now she is doing radiation. Love to talk more let me know if you have questions.

joe

candyk said:

Hi, Jill-

I share your frustration! I was diagnosed with dysgerminoma 14 years ago when I was 15. Being so young at the time it never occurred to me to try to get more specific information about dysgerminoma. My doctors inundated my family and I with general cancer info and chemo info, but nothing specific to my type of cancer. At the time it was more helpful than nothing, but as I have gotten older, I have continued to try to find dysgerminoma info, but have not been successful. A couple of weeks ago I visited with a gyn/onc after a few years of only seeing a general practioner, and he was not much help with dysgerminoma info either. At least he had heard of it (I always have to inform new doctors about the type of cancer I had - I move a lot...).

One thing you might find interesting is that though my chemo treatments happened 14 years ago (I had 6 rounds; I was stage III), I had the same drugs you did. I guess I am living proof that they are a good combo!

Good luck with your follow-ups.

Candy Mickels Mejia

joanna said:

Hello Jesper,
I was diagnosed with pure Dysgerminoma. I was told that this type of cancer is rare. Is your wife young? Dygerminoma usually hits teenangers and young 20 year olds. I was diagnosed with this in 2000 at the age of 29. I was told that I probably was one of the oldest to get this cancer. The stage they found the Dysgerminoma was stage IIIc. I had surgery-they removed 1 1/2 of my ovaries and some lymph nodes (mines also mestasized). After surgery I went through chemo. The chemo I had was called BEP regime(Bleomycin,Etoposine(VP-16), Cisplatin. Dygerminoma cancer cells is extremely sensitive to BEP chemo. Tell your wife that is very good news. From my personal study of this regime I found that the rate is 95-99% that the chemo will work against Dysgerminoma. Take It Easy *PEACE*

sera0406 said:

Dysgerminoma Stage 3 C
My sister, 36 yrs old, has been diagnosed with Dysgerminoma Stage 3 C
[Lymph node & Peritoneal fluid & gutter washing: positive for malignant cells]. Her left ovarian tumor [20*20*10cms] was surgically extracted last week. We have been advised to undergo the BEP chemotherapy after a month.
Pls. advise us on information that you all may find useful at this stage.

andreat6777 said:

I realize this is kind of an old post but if someone new sees it
Dysgerminoma became a part of my life on 10/7/1986 at 9 years 4 months old. I had an exploratory lap and they had no idea cancer was going on. I was rapidly sent to St. Jude Hospital where a lot of tests were done--no signs of disease but because cells were on the edge of samples they wanted to repeat some biopsies. Biopsies were done and all looked clear. They opted for observation. No chemo.

Fast forward to Fall 1992. I was 6 years out and they believed it gone for good. Unfortunately I had been feeling awful and my mom was a bear in regard to my health. She insisted I return to the hospital before my first scheduled yearly appointment. In assessment triage they noted my BP to be insanely high. Systolic was up in the 200's and the diastolic (?) was in the 140's. There was an immediate suspicion a kidney was related and subsequent scans proved it.

Even then they believed I had a swollen lymph node but after a surgery with a urethroscope showed injection of dye coming out in a squiggly manner the urologist suspected tumor. I remember lying on the ct scan table having to drink the contrast straight and it being injected too. I overheard the doctor's anger at my having been told it wasn't dysgerminoma.

That was Nov 1992 and the Internet wasn't available so I didn't know my odds, knew no one else with it, and just assumed I wouldn't make my 16th birthday. I began Bleo, Cisplatin, and Etiposide about one week after the surgery to remove my affected kidney. My relapse was called stage IV yet after tumor board they elected not to do radiation and to leave my left ovary. I finished 2/15/93 and my 16th birthday came that Summer, then 17th, then 18th. Before I knew it I was 30 years old and had missed a lot out of fear of cancer coming back.

During treatment my menstrual cycle stopped and we were afraid cisplatin would cause infertility--actually I returned to St. Jude last week for their St. Jude for Life study and was told this was a possible sife effect. The side effects specific to these therapies seem to not have affected me too badly. My husband and I married in Aug 2002, our son was born in Dec 2003, and our daughter came along in July 2005. My poor husband had a vasectomy when our daughter was six weeks old because he said I would continue popping them out every 18 months lol. I do have very slightly elevated cholesterol that could be genetic or because cisplatin remains in the system apparently forever.

I have a complicated medical history in regard to also having something called Cowden Syndrome but for the problems known to be associated with BEP therapy my lung function is normal, heart seems ok--beats fast but regular. I do have SOME hearing loss in my left ear but it's higher tones and I have a little problem in conversations BUT it's not so extreme I need an aid. They said my brain has probably learned to compensate for the sounds I miss. The biggest thing is I don't hear birds any more lol. I'll take it.

So I had a metastasis to my kidney, took BEP from Nov-Feb, and am now approaching my 34th birthday (I just passed EIGHTEEN years off chemo--not bad for a girl who believed she wouldn't make 16). The biggest thing is my hearing and who knows--that could have been caused by the rock concerts my husband used to drag me to! Well, and my cholesterol is a little bit of an issue but not too bad yet.

mzchichi719 said:

Just finished BEP chemo for Dysgerminoma
Hi all, old original post but glad to see recent posts.
I am 24 years old and was diagnosed w/ ovarian cancer this January (2011). I had surgery to remove the tumor along w/ my left ovary and fallopian tube. I had chemo from Mar 2011 to May 2011, BEP 3 rounds (3 weeks each, a total of 9 weeks). I tolerated the chemo very well, and also they have very good anti-nausea meds now. They gave me Emend, Zofran, and Aloxi during my chemo infusions. Then they gave me Compazine and Ativan to take at home as needed for nausea.

My side effects included:

Ringing in the ears (started after first week). I don't think it has affected my hearing. I take vitamin E everyday because I hear it helps w/ neuropathy and ringing in the ear is damage to hearing nerves in the ear. It's from the cisplatin and it's been 2 weeks since my last dose of cisplatin and the ringing has gotten better and hopefully will disappear.

Skin changes (started in the first week). Randomly I would get itchy spots on my skin that starts of red (but not raised). After a couple of days it becomes just some dark streaks and not itchy anymore. This is most likely from the bleomycin.Nothing you can really do about it, I hear that the darkening will go away. I got it in a few places on my neck and on my upper arm and back. There's also random darkening of the skin on my fingers and palms. Be very gentle on your skin because any scratches or marks became dark and have not yet gone away for me. Also skin on the knuckles of my toes darkened.

Sores. I got some sores on my heels from a pair of shoes that I've always warn without a problem, although they're not the MOST comfortable shoes. I started wearing flip flops and now they dont hurt much anymore but the sores are still there (not open sores, but dark like a bump). Then I noticed another one on my elbow and know that's not from any kind of clothing. Myabe they pop up where there's extra skin? Again be gentle to your skin.


Hair loss (started in the 3rd week). It was noticeably thin a few days after it started (it goes fast). Shave it as soon as it is noticeable to others and you don't feel comfortable without a wig. It is much more devastating watching all your hear fall out and spending 15 min after each shower cleaning up the bathroom. It's scary to shave it at first but after I did it i felt soooo much better. Get a wig, wraps, etc. My eyebrows thinned the tiniest bit I think- so little i'm not sure. And my eyelashes thinned. I'm Asian so not like I ever had long thick lashes anyway Hair fell out for the rest of my body.

Nail changes. My nail beds became dark and streaky. So I started painting my nails

Taste change. Everything was bland, especially salty things, around the 6th week. I would literally eat salt and not taste it. Only lasted for about a week, which is great bc I love food.

Thrush. I had Thrush around the 6th or 7th week (like a yeast infection in your mouth) It's a white coating on your tongue due to low immune system from chemo. Had to use a mouthwash 4x a day to get rid of it - may have been the cause of my taste change.

Fatigue. I got really tired on the long weeks where I got treatment 5 days in a row. On weeks 2 and 3, I only got bleo on Mondays so I would feel a little tired monday and tues.

Nausea. I never threw up at all. I felt nauseated the weekend after the long weeks, I took the take home anti-nausea meds which helps. They have really good anti-nausea meds now.

Hard stool - take stool softener when you notice it. i never had constipation though but I heard alot of ppl experience it.

Low white blood cell count. They were always low on the 3 week so that week I would have to get neupagen shots. Counts raised again by the following week. However, neupagen shot side effect include bone pains, my lower backbones and my sternum were throbbing so badly.

Today was my last treatment woohoo! Now im just waiting for my hair to grow back, which I hear takes a while. I hear it could grow back wavy which would be cool. I'm paranoid that it won't grow back or will be thin but I think it usually grows back pretty much as thick as it used to be I am keeping my fingers crossed. This was the most devastating part of the entire thing for me, being a woman and all. I used to love my hair. At least it's temporary.

That's all I can think of now sorry for the long post. I will update if I think of anything else. You can also send me a msg if you have any questions and I can share my email address.

Hope this helps - It's such a rare cancer it's hard to find much forums about it.

joeyb said:

my wife is 33 and just finished 4 cycles of BEP for dysgerminoma that went to the bone. It was hell but se made it through. Now she is doing radiation. Love to talk more let me know if you have questions.

joe