Other dysgerminoma survivors?

[candyk]

I was treated for dysgerminoma with surgery and BEP (chemo) and have never met another person who's had dysgerminoma. I was just wondering if there is anyone else out there who has had this rare, highly curable cancer.

Thanks!

Candy

[kellygirl2783]

I also had dysgerminoma in 95 @ the age of 13 my tumor weighed 8 lbs it was as though I were pregnant but I hadnt even started my menstrual cycles it was a huge rollercoaster ride my dr. said I was pregnant but I never had sex or a period plus without a urine test after she worked my mom nd me up she sent me 4 the test nd it came back negative then she told my mom it was a mass I had chemo from aug-dec of 95 im still here thank god but has been just recently told I do nd dont have cancer now I must wait 4 the specialst to see whts he has to say :( and welll as to the late affects I am always complaining of stomach issue s nd fatique welll I hope ur get this nd hope ur well

[srm4041]

Candy,

Thank you for the advice......I have been thinking about herbal stuff and even homeopathic.  It has been good "talking" to you.  :)

Kelly,

Wow!  That is the BEST news!   You are truly blessed not have to go through that!  That is just so wonderful!

Well, gotta go....soccer games and track meets!

Have a great weekend to both of you,

Susan

[KellyK725]

No Chemo!!!

I do have to do a laprascopy in 3 months so he can biopsy everything again, but after this last hellish surgery, I'm not even worried about it!

As for now, everything looks good and he said there's no need for chemo!

Thanks for everyone's support!

-Kelly

[candyk]

Hi, Kelly-

Best of luck to you on your diagnosis! Please keep us posted.

Candy

[candyk]

Hi, Susan!

I only have a minute, but I wanted to quickly let you know that the type of cleanses I have done and have looked at doing are basically herb based. There are certain plants and herbs that are believed to flush toxins out of the liver and kidneys. I have a tea that I drink regularly - I think the brand is Yogi Tea - and I always feel a bit better after. The "flavor" is Peach Detox, but I think they have one or two other detox versions. Any of the over the counter cleanses I have seen (like from a health food store) involve taking capsules of herbs, drinking lots of water, and sometimes a fiber product to help "sweep" the colon (as they say...). If I can find a specific brand or web link, I will let you know!

Candy

[srm4041]

Kelly,

I'm sorry you are having to go through this.  That will be so wonderful if you do not have to go through chemo!  If you do, however, you can do it!  If you need any support through this, you can always come here and/or you can always ask your doctor if he can get you in contact with another similar patient of his, if there is one.

It does really, really help to talk to someone who has been through the same thing.  

Take care!  :)

Susan

[srm4041]

After your post and talking to my friend, I do think the fatigue we are experiencing does have something to do with our illnesses/treatments.  Knowing the kind of person I was before and how I feel now, I don't think it's just an age thing.  Not that I want my kids to grow up fast at all, but it's been that much more of a struggle to take care of myself....or either my priorities are just fine-tuned on them.   In short, I have such a hard time taking care of our family and me.  So I am just doing the best I can and think there will come a time I can focus more on me (I have four teenagers and two in their twenties!).

Now this is just my opinion, but I was told it was really unusual for a 35 year old to get this cancer......but, I started my family young and, after having a Cesarean with my first, they just happened to find a golf-ball sized cyst in the ovary (not cancerous...yet anyway).  This is the same ovary that later became cancerous.  My theory now is that, since I had all my children so close together and nursed them in between after that.....my children may have saved my life....or at least postponed the full development of the disease (after all, I had always read that having children/nursing was supposed to be a protection...so having children may have delayed what was starting).  

It was not long after I was done nursing my last baby that I started having vague symptoms that got stronger with time.  Anyway, since the disease has something to do with the germ cell....perhaps my lack of ovulating those years was the factor.  It's just my theory as I looked back at my experience.  My doctor said that if I had gotten this 15-20 years before (this was seven years ago he said this), my chances would not be good (I was stage 3c).

You and I are extremely blessed.  It is a weird thing because I do feel pretty healthy except for fatigue/migraines.

How do you go about getting "cleansed".  I have heard good things about it, but don't know that much and wouldn't know what to do.  Is that where they take you blood out and clean it?  I have never smoked/drank and I eat pretty well.  Also, I drank water like it was going out of style when I was taking chemo and my organs looked great afterward.  I just need to exercise more (I used to be extremely healthy/work out, etc).

Well, now I'M sorry this is so long.  :)

It's been good "talking" to you though.

Susan

[KellyK725]

I have germ cancer too! I got my immature teratoma removed about 4 weeks ago. They thought it was a dermoid cyst so I was shocked to find out it was cancerous, but yes, it is an extremely curable cancer, so I'm very lucky.

My surgeon tested all the organs around me and they all came back benign. He's double checking my abdominal fluid and taking my pathology reports to a conference to doublecheck everything. While the cyst was growing, part of it burst and it got smaller so he's a little worried about that. If they all agree that it hasn't spread, I don't have to do chemo but if there's even a little blip that they catch, I have to do four rounds of BEP chemo.

I find out on Friday morning and the waiting is the worst part!!!

[candyk]

Hi, Susan-

PCOS is polycystic ovarian syndrome. Reading about it, it doesn't seem like it is a very concrete diagnosis and could be a temporary condition. One aspect of it is hormonal imbalance, which can contribute to fatigue, but who really knows, right?

I have had issues with fatigue here and there since my cancer treatment. Sometimes it presents as just not having an abundance of energy, and other times I am just totally wiped out! Maybe it's getting worse as I'm getting older, or maybe I'm just getting older! But for now I am following my doctor's recommendation for the PCOS and taking Metfornin to help my hormones balance to see if it affects my energy levels. I am really not into taking drugs if I don't have to (considering how many drugs in large amounts have been pumped into my body!) so after a month or so and another visit to my dr. I think I am going to try a more natural approach. We'll just see, I guess!

I really have been very healthy all these years, but seem to have always struggled with having enough energy. Because of this, I tend to live very healthfully (I think). I don't eat much meat (no beef or pork - was completely vegetarian for a few years), rarely eat fast food/junk food, practice yoga, see a chiropractor, stay close to my target weight, choose more whole grains than not, limit sugar - you get the picture! Who knows if any of that actually helps, but it can't hurt! I still get very frustrated by my lack of energy, but it is what it is and I have so many other blessings in my life, I try not to dwell on that issue.

I hope there are many more resources available to the 15 year old you were in touch with than there were when I was sick! It was a very isolating experience. BUT it has helped make me the person I am today, so I don't resent the experience.

Have you tried any cleanse or detox programs? My chiropractor recommended one to me after I told him about my medical history. His thought was that the liver and kidneys retain a lot of the toxins from chemo (for years even) and that cleansing can help with fatigue. I felt great after the two times I've done the program, but it's super expensive, so now I am just looking at what's available at places like Whole Foods and see how those work.

Sorry for the long post! Take care,

Candy

[srm4041]

I'm so glad you have a little girl and are doing so well!  Even though I am so grateful to be cured, and I am doing really well....the hard thing for me is knowing what normal is as far as my energy level goes.  I can be chugging right a long and then, boom! I can't do much of anything for a day or two and I never know when that is going to happen.  I'm working on it though.

I'm just trying really hard to take care of myself and hope that I will improve.  Well, you know how it is to be a mom and you put yourself on the back burner.  That may be all it is.  I'm so glad you have lived such a full life.  That must have been so traumatic for a 15 year old.  I'm glad my doctor put me in touch with the 15 year old who was going through the same thing.  It helped us both.

Well, take care,

Susan

PS  What is PCOS?  Also, I am 41 now.

[candyk]

I didn't know that about the scratching! I have marks on my left upper arm that look like scars from scratching, but I could never figure out what caused it! I think when I was treated with BEP it was a pretty new regimen because my first treatment was with carboplatin, not cisplatin. Dysgerminoma is a germ cell tumor, so, yeah! I was 15 when I was diagnosed and had surgery to remove the tumor, my right ovary, tube, and some lymph nodes. I had 6 rounds of chemo following the surgery and have had 4 surgeries due to adhesions since. I am 34 now and have a little girl who is almost 3. I needed a dose of clomid to conceive, and recently discovered I may have PCOS, but there is no reason to believe that is connected to my medical history.

I have had relatively few health problems since my cancer treatment - graduated from high school and college with honors and have had physically demanding jobs since. Chemo ***** but I am here to tell about it, so I can't complain too much!

By the way, I also have migraines, though I had my first migraine when I was around 13 - a good year and a half at least before my cancer diagnosis. I do have fatigue, and that may be a side effect of chemo, but it also may be linked to PCOS. I'm not really sure about the PCOS diagnosis - I am not a typical candidate for that diagnosis (never had any weight problems).

I really could add more about my experience, but as I said, I am a mom to a 2 and a half year old, and duty calls!

I will check in again soon. Be well, and good luck!

Candy

[srm4041]

....oh, also, if you start to itch really bad....whatever you do, do not scratch hard, where you are putting a lot of pressure on your skin because you will get these scratch marks that may never go away.....I still have them seven years later, although they have faded some.  I started scratching and then, during my second round of chemo, my doctor saw them on my upper back and he said, "By the way, don't scratch"....too late.  :(  I found a way to just gently rub my hand over the itchy area like I'm trying to warm myself.  My friend said her legs itched so bad that she scratched them raw, but she didn't get the marks for some reason.

Read Lance Armstrong's book if you can.  Even though he's a guy, it's pretty much the same thing.   That really helped me.  Also, read the related posts that are listed below to get more info.

[srm4041]

The friend I was referring to in my post also had the teratoma type of germ cell cancer and that was about ten years ago and she is doing great!  Our treatments were pretty much the same.  Her cancer had spread to her colon and mine had gone to my surrounding lymph nodes.  Now I remember that mine was a yoke sack (endodermal sinus tumor).

Are you taking a week of chemo (cisplatin & Etoposide (VP-16) with a couple days off followed by a day (or two) of bleomycin?  (It has been awhile so my memory is shaky)....with four of these treatments spanning over about four months?

My six children were elementary to high school ages so I chose to spend that week in in the hospital, then I would come home for the weekend and take the bleomycin as an outpatient.

That worked really well for me.....if I had different living arrangements, I may have chosen to do everything at home, but my mother and husband worked and this was much less disruptive to my children.  They would just come see me rather than have to take care of me and I could kind of pull myself together while I was gone and really get some rest.  There is something about having kids....you want to be so strong for them. The first chemo was okay, but it was really nice to be able to be taken care of at the hospital, especially as time went on.

Everyone is different in how they respond to chemo.  I wish you the best.....take good care of yourself and do not turn down any help.  :)

Sincerely,
srm4041

[gina76]

Hi!
I'm gina, i'm 32 and was just diagnosed with immature teratoma 3 weeks ago and started BEP treatment last week. I don't know anyone who has ever even heard of this type of cancer. It would be great to hear from others who have been through this same thing. I hope all is well.

[srm4041]

Candy,

Hi!  If dysgerminoma means germ cell ovarian cancer, I had it too.....about seven years ago.  At any rate, I had the same treatment as you.  At the time I was also told it was rare, but I was lucky to meet a family friend who had gone through the same treatment for a teratoma germ cell cancer (I do not know what I would have done without her)!  Then, just after my treatment, my doctor put me in touch with a 15 year old who was going through chemo for the same thing!

Then I live about an hour away from Lance Armstrong....I was starting to think there was some kind of Texas cluster.

Anyway, I was 35 and the mother of six children (still am!) when I was diagnosed.  I found your post on a google search while looking up late effects of chemo.  For someone who rarely had a headache, I have had terrible migraines for the past few years as well as fatigue.  I don't know if that has anything to do with chemo or maybe I'm just getting older.  My kidneys, hearing and lungs are fine though.  

Anyway, I'm just wondering if anyone else has had problems years later or not.

I'm glad you are doing well!

srm4041