Welcome to the forum RP.

We're really glad to have you with us and I'm sure our members will really appreciate any information or advice you have to share about your diagnosis or the cancer journey in general so do continue chatting to others when you think they might benefit from your input as I'm sure they would love to hear from you :)

Kind regards, 

Steph, Cancer Chat Moderator

Hi RP

I too was diagnosed with an immature teratoma on my ovary .. 3 days before Christmas last year. 

I am just about finished my third third cycle of BEP (I have my last bleo in 3 days!) after having my tumour and right ovary removed. 

How did you find the chemo treatment? 

Ive really struggled the last 2 months with my diagnosis and treatment .. thank heavens for family. 

Yea my nurses and oncologist said it was a hard regime too. I had nothing to compare it too but tended to agree! Chatting to people in the clinic on treatment days they were always surprised when I'd say to the nurses "see you tomorrow"  and then for days after that. I found I was always the youngest person there, by a good few decades  I found that a bit upsetting some days  

I've had the same side effects mostly. Couldn't believe how early my hair started coming out, in such huge amounts. I got it clippered short day 18 of cycle 1 because it was just so so thin. My nausea hangs around the whole cycle but does lessen a bit towards the end so I spend a few days eating as much good food as I can just to get some calories in. How have you found the neuropathy? Has it eased since? I have some skin toxicity (like callouses on the palms of my hands) that are a bit painful at times but thankfully don't cause any real issues. 

Did you have a picc line put in for treatment? 

How long ago were you going through this? 

Im from Australia btw :) 

I had chemo between may - July last year. I had surgery in August. Do you need to have sugery?

I had the choice of a PICC or port, but I went for the PICC. I was so glad to have it out when treatment was over :) 

I found the neuropathy bad mid cycle. I couldn't do my childrens shirt buttons :( not very good in getting them ready in the mornings! My knuckles and elbows went black fro the bleo. Also I have strange stripes on my skin!

I suffered from a lot of bladder issues. I was an in patient for days 1-5 as my fluid was measured in & out. 

Now I don't suffer too much. I think I have raynaud syndrome linked to neuropathy (not brilliant over Winter!) and have my appetite back. My heart rate is fairly high though.

I have tried to add you as a friend here. If you are on FB I will PM you my details. There s a closed group of fellow patients who can share experiences. We can get you added there if you want? 

Whereabouts are you in Oz? 

I've just sent you a pm :) 

Hello

I also have been diagnosed with immature teratoma (right ovary).

I had it removed in july last year but tought it was a mature teratoma, only found out it was the immature kind after the biopsy results almost a month later. So around october I started the journey of understanding what had happened and what still needed to happen, but because it is so rare I found it very hard to find a doctor that gave me the sense of security that they actually knew what to do. In november I had an MRI and it showed that I probably had 2 secondary tumors (one behind my uterus and another next to my liver).

I started chemo in march of 2018 and had 3 cycles of BEP. I found treatment pretty rough. The first 2 weeks of every cycle were the hardest: nausea, sensitivity to smells, dangerously low blood pressure, bloating and gas, constipation or diarrea, overall discomfort. My hair fell after 2 weeks of the first cycle. Also had neuropathy and some dark nails which didn't bother me that much, but then last week some nails started getting loose, I think they're gonna fall :( . Had some calluses in my hands but they're gone now. And I have some dark marks in my skin as well.

After chemo was finished I had a new MRI but the results weren't positive for the tumor near the liver. So now I'll have another surgery (in 4 days) to remove those and have a full histerectomy. After the biopsy results from this surgery will see if more chemo will be needed.

Sorry for the long post, I made it as short as I could (and still left some details out haha).

As you girls said, a good support system is great. For me it's friends and family <3. Still I missed talking to people that actually know what it is to go trough this, thank god I finally found you (would love to be added to the FB group if that's okay).

How are you girls now? Are you all done with chemo and everything?

Hi Gabbi,

There is a closed FB page where you can join and share experiences with people who are like you - going through it, as well as those who have gone through it. Just search for Germ Cell Ovarian Cancer Support Group. I have tried to PM you the details but it wouldn't work! 

I'd recommend it as you don't feel like you are on your own xxx

Hi,

Realised I never actually responded to your questions!

I am 11 months post chemo, and 10 months post surgery. I am back to work, although am lucky enough to be able to work two days (of 4) from home.

I feel much more like my old self, although I never will be the same. I did feel I was able to recover quicker after the hysterectomy physically than from chemo. Weird! I felt very emotional about the loss of my fertility though (& still do)

How are you feeling about it all? Where in the country are you being treated? 

If you accept my friend request on here, I can PM you the details (not permitted to do it on the forum)