Vulvar Cancer: Anyone else?

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.

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

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?

Thanks for your response.
I’ve tried aquaphor, hydrocortisone, vulvar balm, barrier cream, vagisil, silvadene & lidocaine. Some work short term. I have lots of flare ups of itchiness, soreness, inflammation. Don’t know what else to try!

I am investigating the Press Pulse therapy now - shrink tumors via control of glucose and glutamie. Dr Thomas Seyfried on You Tube. He refers to chemo as "brutal." He also uses it in low dosages to help the body clean up after tumor shrinkage with the press pulse therapy. I'm not a disciple yet - just curious and investigating.

Never heard of this but will look into it. What type of cancer do you have. Mine was vulvar.

Thank you for responding!
You have been thru a lot but you give me hope! Thank you.
Can you tell me if you use anything to help soothe your skin or any suggestions ? I’ve tried a lot but nothing makes me feel like I did prior to vulvar cancer. I’m thinking I never will!
Just want to feel some sort of normalcy!

I understand your frustration. I have good days and bad. I can have burning and itching with pain throughout however, I have found something that works. We have a Toto washlette that sprays water over the area but that doesn’t always help. Urine can be pretty painful. I purchased through Amazon cleansing wipes called Theraworx that have a low ph factor and are very soothing. They are not cheap but I notice a big difference when I use them. I showed my radiologist and she has seen them used in the hospital. Toilet paper has chemicals that can burn the vulva. My doctor prescribed both Estradiol Vaginal cream and Premarin which I use daily after showering. In the morning and evening I slather on Triamcinolone Acetinide which is a cortisone cream base of light mineral oil and white petrolatum. This acts as a barrier of sorts. The above requires a prescription so I recommend discussing with your doctor. I have lichen schloros which lead to the vulvar cancer and I have used cortisone for years however, the estrogen creams are new to me. I have read that most women would benefit from using them. I have also used lidocaine which also helps but find I don’t need it as much.

I hope that you can find some relief. Vulvar cancer is rarity and I believe doctor’s don’t have a lot of information on how to treat it. It is important for us to share with others things that help improve our life. I wasn’t prepared to have these late effects from chemo/radiation. I am adjusting to it being my new norm but thankful that I am alive to do so. I hope that my suggestions can be a help to you.

Clobetasol propionate 0.05%?

I have lichen sclerosus & have had laser ablation, then excision of a smaller area, now trying to address current lesions with Imiquimod ("Aldara") cream per my gynecologic Oncologist...which, if it doesn't reduce/ remove them means further excision.

There is a lichen sclerosus support group online that has Zoom calls every Saturday.

As I've researched it on my own, (& having been diagnosed with LS ~45 years ago), LS & VIN II/III (Vaginal Intraepithelial Neoplasia) - the precancerous condition I've been diagnosed with - are more common than we as patients know or are educated to watch for.

Fortunately I've had good (well-informed) gynecologists along the way.

It's still strange to me that the cause remains unknown.

Let me know if I might be of any further assistance.

Best wishes.

Thank you for sharing. You’ve been thru a lot for a lot of years!! Is LS something that comes & goes? Flare ups?
Can I get clobetasol with out a script?