Dysgerminoma

szilvia

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.

Delaying chemo

Hi,

I had a surgery on October 16 to remove a mass. It was only supposed to be 1 hour long. I was in there for 6 hours because they found cancer and started to remove everything. My ovaries, uterus, 10cm of my rectum, appendix and 4 lymph nods. We waited for the pathology results for 2 weeks. I am 36 years old and it is rare to have this kind of cancer at this age. 

They wanted to start chemo 1 month after the surgery. My wound opened up and I couln't start chemo. First I had to pack it with gauze strip but it drained a lot and did not want to heal.

Than the doctor ordered a CT scan and found out that I have a large cavity under the hole. He cut my wound up more and odered negative pressure treatment (wound VAC) I had a nurse coming to change the dressing every other day. They put a sponge in the wound than connected a suctioning device to stimulate tissues and promote healing. I had a 3.5 cm deep tunnel which did not heal. The nurses did not use the sponge correctly...I called the VAC company and after their instruction I started to heal. After 1.5 months my wound was closing. I got off the wound VAC. The next week a hole started to form and it was getting bigger. I got some bacterial infection. They put me on antibiotics and cut out all infected tissues. I had a 3 cm hole again. My chemo got pusshed back every week because of the open wound. Now I am 3 months after my surgery. I went to a wound care specialist today. The doctor gave me a collagen patch. He said I should heal in 4-6 weeks without chemo. If I start chemo healing time will be 20 weeks... I don't know what to do. Should I delay chemo an other month or would it be to late? I was stage 3. I am so weak and in pain already. Worried that it would just get a lot worse with chemo...

Alexandra

szilvia said:

Delaying chemo

Hi,

I had a surgery on October 16 to remove a mass. It was only supposed to be 1 hour long. I was in there for 6 hours because they found cancer and started to remove everything. My ovaries, uterus, 10cm of my rectum, appendix and 4 lymph nods. We waited for the pathology results for 2 weeks. I am 36 years old and it is rare to have this kind of cancer at this age. 

They wanted to start chemo 1 month after the surgery. My wound opened up and I couln't start chemo. First I had to pack it with gauze strip but it drained a lot and did not want to heal.

Than the doctor ordered a CT scan and found out that I have a large cavity under the hole. He cut my wound up more and odered negative pressure treatment (wound VAC) I had a nurse coming to change the dressing every other day. They put a sponge in the wound than connected a suctioning device to stimulate tissues and promote healing. I had a 3.5 cm deep tunnel which did not heal. The nurses did not use the sponge correctly...I called the VAC company and after their instruction I started to heal. After 1.5 months my wound was closing. I got off the wound VAC. The next week a hole started to form and it was getting bigger. I got some bacterial infection. They put me on antibiotics and cut out all infected tissues. I had a 3 cm hole again. My chemo got pusshed back every week because of the open wound. Now I am 3 months after my surgery. I went to a wound care specialist today. The doctor gave me a collagen patch. He said I should heal in 4-6 weeks without chemo. If I start chemo healing time will be 20 weeks... I don't know what to do. Should I delay chemo an other month or would it be to late? I was stage 3. I am so weak and in pain already. Worried that it would just get a lot worse with chemo...

Do not delay chemo

I had 3 rounds of chemo with 2 open wounds (one from hysterectomy, one from IP port) and had them packed every day by a nurse for almost 3 months. Nothing horrible happened. They started healing once chemo was finished.

nataliestone

long term effects after BEP chemo?

Hi,

I was diagnosed with Dysgermonima when i was 23. ,y tumor was 1.5 kgs and 12 cm wide. They removed my right ovary along with it. i had no idea it was there until i went for a gyni check up...my first...after pressure from my mother! 

i was told i had a rare cancer but that cure rate was high, any way went through the chemo though time...but now its all gone i still get paranoid and feel i need a Chest pelvic and abdomen CT scan every year, which i do do.

What i would like to know if anyone knows... is what are the long term effects of the Chemo BEP on the body? i was told that hearing could be affect at about the age of 60, something to do with hipdisplasure? (not sure of the spelling) , also scaring on the lungs, dizziness…does anyone know?

and by the way had a slim chance a falling pregnant after the chemo...and i beat the odds and fell pregnant with a healthy baby girl! so for you young girls out there, there is always hope just have Faith!

thnks

Natalie

Kezhal926

Dysgerminoma Blog

Hi all!

 

My name is Kezhal Shah-hosseini. I'm 21 years old and was diagnosed with Dysgerminoma this past weekend after my surgery to remove the mass that was growing on my right ovary. Originally, I had gone into surgery thinking I had uterine fibroids (benign, non-cancerous tumors), so you could imagine the shock I was in when they told me I had this rare cancer. The mass was bigger than a volleyball, so my stomach was huge! 

 

I decided to start a blog to document what life is like everyday with Dysgerminoma, how I feel, docotor's visits, and what I learn about the cancer. I'll even talk about the chemo once that begins next month. I thought this is a great way to reach out to others and hopefully meet or talk to others who have this and to show that there is nothing to be afraid of We're lucky it is curable! 

Here is the link to it:

http://ahiccupinlife.wordpress.com

 

Hope this is/becomes helpful!

 

Best Regards,
Kezhal