Vulvar Cancer: Anyone else?

I am having some late radiation side effects with lesions that won’t heal. My treatment ended in August 2022. I recently started pentoxifylline 400 mg twice a day. I have read several articles that state the medication shows good results but it takes several months to see change. It somehow helps in the production of blood cells and it is suggested to take with vitamin E. My radiology oncologist has also suggested HBOT which increases oxygen levels which help with healing. I won’t begin to explain HBOT but it can easily be researched. I have requested a new prescription of StrataXRT but have not received it yet so cannot say if it works for later side effects. Hopefully it will help since I had such good luck with it protecting my skin during treatment. What is happening to you and what are you trying?

Can strata xrt help with the late side effects of vulvar radiation? I finished radiation treatment I. August 2023.

Thank you for the info Helen. I believe you also sent this to Melinda. I will let her reach out to me if she wants to communicate. I wanted her to know that I was here for her.

@tilli @melindab2 If you would like to have a private discussion in which you exchange personal ways to connect with one another you can use the personal message (PM) on this page.

There are two ways to PM.

1) Click on the @name at the top of the post you are reading for that member. This will take you to the member’s profile. Under the member’s photo (or where the photo would appear) you will see an envelope icon and “Send Private Message”. When you click on the envelope icon you will be taken to the PM page where you can type your message.

2). You can also go to the right hand top of this page where you will find the envelope icon. Click on this envelope icon and again you will be taken to the PM page. If you take this route you will need to type the @name member yourself in the To: section of the message.

I’m pleased that you have found support with one another and are interested in connecting more in the future.

Hi Melinda,
I have such a fear of the unknown and once I started treatment it became easier. What you read is not necessarily what will happen to you. I was all prepared for neuropathy and purchased items that would keep my hands and feet cold. I think I used them once during chemo and gave up on them. Turns out I didn’t get neuropathy anyway but, not saying that you may get it. I just saw my radiologist oncologist today for some issues I am having. She is a wonderful doctor and very caring. I know she is looking out for me and doing everything she can to help me recover. Having a doctor that relates to you is very important and being able to find someone to talk to about your anxieties is a huge help. I can relate to your anxiety and since vulvar cancer is considered rare there is not a lot of information available.

I had breast cancer 25 years ago and began volunteering as peer support. It then lead to volunteering in a cancer center talking to current cancer patients up until COVID. I stopped when I got vulvar cancer focusing on myself. I would be very happy to speak with you. Not sure how we can connect but i think it easier to talk via phone but not sure how we can accomplish that. If that interests you, we can try to work something out. We can also still communicate via this website. You are not alone.

Thank you Tilli!! i ordered a chair on ebay free shipping and it was 50 dollars new. There were a lot to choose from. Wood, classic design. I can McGyver the angle if i think it will help and even hollow out a hole if i need to. My friend's husband had prostate surgery five years ago and really liked the cushion from cushionyourassets.com
It's unique. Two long pads that you an adjust the width of the space between.
I would like to reach out to you. I'm in Redding but will receive treatment in Sacramento in a couple weeks. Supposed to have a good outcome but brutal treatment. That's what i've focused on but now with this sharing platform i'm reading about lingering pain, neuropathy, etc. That's very scary. And the more i read is more scary. Mine went undiagnosed for a year.

I have a new normalcy. I am 77 years old so am experiencing some changes that typically come when getting older. I do have radiation dermatitis that causes discomfort and also causes me to worry about a reoccurrence. I am trying to say to myself “today I don’t have cancer”. Shortly, after I was recovering from the treatment, I was diagnosed with a brain aneurysm. And, prior to all that I had a complete hysterectomy that caused some nerve damage to my leg. So, considering everything, I guess I am doing pretty well. I am very fortunate to have a very supportive husband and family.

I don’t know what your circumstances are but treatment was extremely difficult. I found radiation caused a fatigue that I didn’t think I could make it through. I almost stopped early but my husband and doctors encouraged me and I did it and more importantly, you did it as well. I am no longer able to do the things that I used too and tire easily so I take a nap. I also don’t push myself. You are not alone in your feelings and I grieve the loss of my old self. I am adjusting but things will not be the same for me. We had a passion for travel but are putting all that on hold. And, now it would be ok if our trips were fewer and closer to home.

I could ramble on. Please feel free to connect.

Thank you so much for your input. My journey with vulvar cancer started with lichen sclerosis also. I had 7 weeks of every day radiation and could only withstand 2 rounds of chemo. They wanted me to have 5 but I ended up in the hospital. My oncologist & radiologist explained what to expect during treatment but no one tells you what to expect after except that this is the new you & normal you!
I have good days & bad days but never days where I don’t feel normal. Do you agree?

Hi Melinda,

I don’t know if a kneeling ergonomic chair could be helpful. If you are spending up to $200, you may want to consider buying a bidet type toilet seat that replaces your toilet seat and you can run water to the area while urinating. This helps relieve any burning sensation. I know there are many options to choose from that run reasonably priced to high end. We bought a washlet made by TOTO at Costco that works really well. The heated seats require an electric outlet close by and are easy to tap into the water line. There are less expensive types that do not need electricity however the water is cold which can also be soothing.

No one wants cancer and to have it on your vulva is pretty frightening for so many reasons. Please feel free to contact me if you have questions. I live in San Francisco and was a cancer volunteer at UCSF (University of California, San Francisco) for many years.

Just starting treatment in a couple weeks and thought a kneeling ergonomic chair might help take pressure off. I can find various kinds new on ebay from 50 to 200 dollars with free shipping. I think the angle might help. Its worth a try. Also a friend is getting me a link to a different kind of cushion that is supposed to be better than a donut. I'll pass this info along when i get it.