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Small Cell Neuroendocrine cancer of the vagina

Good afternoon-

I am new to the site, somehow wandered here from google while trying to figure out when I might lose my hair from chemo. I am an American living and working in Germany when I was diagnosed with small cell neuroendocrine cancer of the vagina (T2N0M0) in February. I underwent open resection of the tumor along with lymph node biopsy (none positive at the time of surgery but a new one lit up on MRI on the 5th of April) and have completed one round of chemotherapy with cisplatin and etoposide. Found myself in the hospital 5 days after chemo with a fever and infection and just got released yesterday after eight days. Due to start my second round of chemo in about 10 days and petrified this will happen again! Have noticed some hair loss and scalp sensitivity but no large clumps. Just trying to see if there is anyone out there who is going through something similar. I could use some support.


  • LouiseJLouiseJ Posts: 720 mod

    Hi @Christina_C ,

    A very warm welcome to you, it’s great that you found us, there are a growing number of people joining and everyone is very friendly. You will receive a lot of support here and understanding of what it is like living with cancer and the treatments that go with it.

    I am sorry that you have been through so much already with one chemo. Will your oncologist be giving the same dose of chemo next time, will that make a difference to avoiding infection?

    I am sure there is someone else here who has been diagnosed with a similar cancer. @Rosegarden , I hope you don’t mind me tagging you, I know you have had treatment for similar cancer, I thought perhaps you may have shared similar experiences.

    When I had chemo, my hair began to fall out on day 14 of first round. I would find it on the pillow, or if I brushed it lots would come away. It was distressing at first and my head hurt a lot! I was amazed at how accurate the chemo nurse was in predicting when it would happen. A couple of weeks later I had it shaved off, which was much better for me.

    Hopefully you have excellent medical care, keep in touch, let us know how you are doing. There are many here who are regularly around if ever you want to chat. Doesn’t need to be about cancer either, we have an off topic category where you can chat about anything else.

    Chat soon,

    Lou x

  • RosegardenRosegarden Posts: 4

    I had vulva cancer Louise, luckily it was outside my body instead of an inner cancer, I had the first one thirteen years ago, then the second one appeared three years ago...and then the third eighteen months ago, I have had radiotherapy and reconstructive surgery. In the area that I have had the cancer, it has made sitting and standing very painful..the only relief I have had has been when I have been lying down. The pain has been tremendous and has gone on for a long time, plus I have had radiotherapy burns and rashes etc, so have had a long time trying to get over it. I was worried about the length of time it was taking to heal and for the pain and swelling to go down. But up to now, I am beginning to feel better and I am not so incontinent now as I was...so, I am hoping that now I can start to live nearly normal again. Thankyou for your kind words, I am very grateful for them. You can feel very lonely at times when you are going through cancer...once again Thankyou.

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