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Stage 4 Vulvar Cancer

Stage 4 Vulvar Cancer

Posted by FunnyBunny on Sep 8, 2019 4:58 am

My Mom was diagnosed in 2014. At diagnosis she had Mets to her left groin.  She had 35 radiation treatments followed by 6 rounds of chemo. She was deemed all clear without any post-treatment scans/imaging. In 2018 after suddenly developing lymphedema we learned the cancer in her groin had never gone away and had been growing. She was started on chemo, 3 different kinds, for 7 treatments. She had a bunch of complications including hospital admission for sepsis 3x. After everything we thought we were in the clear for awhile but 6 months later she had to go back into treatment (chemo). She is not a surgical candidate due to depth & location (femoral artery) and can’t have more radiation so chemo is all we’ve got; now she’s chemo resistant. She just finished her latest round of chemo and a CT scan shows changes in the lymph nodes in her right groin and abdomen; she had a PET scan yesterday. Our options are limited & we are all scared! She just turned 54. 
Anyone have experience or stories about their stage 4 vulvar cancer? 

Re: Stage 4 Vulvar Cancer

Posted by Lacey_adminCCS on Sep 8, 2019 10:25 am

FunnyBunny‍ 

I'm sorry to hear about everything your Mom has been through.

You said her options are limited. Can you share what the options are?

Here: https://cancerconnection.ca/search?query=vulvar+cancer is a link to search results of discussion regarding vulvar cancer.

Your Mom is lucky to have you researching and looking for info!

Take Care,
Lacey

Re: Stage 4 Vulvar Cancer

Posted by FunnyBunny on Sep 8, 2019 4:09 pm

At this point her options are:
if the PET scan on Friday shows new growth/changes like her CT scan suspected, she will start gemcitabine right away. If the PET scan is good we pray she makes it more than 6 months without needing chemo. 
In the meantime we are sending her initial pathology sample to the US for testing and if there’s no match on it (we understand it’s 25% chance at most for a match) then all we have for options are different chemo and clinical trials. If we are lucky enough to get a match she might be a candidate for immunotherapy and/or targeted gene therapy. 
Shes not a surgical candidate & she’s already had the max radiation to the area. 

Re: Stage 4 Vulvar Cancer

Posted by Lacey_adminCCS on Sep 9, 2019 12:57 pm

FunnyBunny‍ 

Thanks for responding. 

I hope she is a candidate.

Wishing you well,

Lacey

Re: Stage 4 Vulvar Cancer

Posted by FunnyBunny on Nov 23, 2019 6:26 pm

It has taken me awhile to get back onto here and update but sadly Mum did not get a match for anything.  We did have a glimmer of hope with a FGF3 amplification showing up and there are 2 clinical trials going on near her for this exact thing but after waiting a month we found out last week that she has been excluded and is not a candidate for the trial.  It seems we keep hitting road blocks and closed doors.  Mum's lymphedema is the worst it has ever been making the simplest tasks very difficult for her (like lifting her leg to get into the shower or getting herself into the car to go to work or putting on winter boots). After a devastating mix up in her appointments (by the facility) Mum's appointment has been pushed back from Monday to Wednesday so more waiting around to hear what is next for her.  Mum's oncologist had mentioned two options previously: start gemcitaine or turn up her usual "cocktail" of chemo from 80% to 90%.  Her normal protocol is taxol and carboplantin.  Plus Mum still has a clot in her leg for which she has been on blood thinners for 6 months....
So we are back to the drawing board with new mets to her opposite side's groin, a leg that has a reduced mobility of 45% compared to her other leg, a DVT that is not resolving...and she is 54yrs old.  Heart wrenching.  I'm not sure what's next or what the future holds. 

Is there anyone on here who is fighting stage 4 vulvar cancer? What are your treatments like? Have you been told of prognosis? Has gemcitabine helped you where your other protocol of drugs has not?

Re: Stage 4 Vulvar Cancer

Posted by Elsie13 on Nov 23, 2019 8:51 pm

FunnyBunny‍ , so sorry that your mom didn't get into a trial. She is just 54 and has so much going on!  I will tag 3 people who I think had vulvar cancer, but I don't think it was stage 4. Maybe they will tell you what treatments they had.  antsy‍ , Redrocket‍ , Jennyk‍ .
....................  Lacey_adminCCS‍  do you know anyone we could tag? 
In 2016: diagnosed with stage 2 ovarian cancer. Treatment: hysterectomy, chemo, radiation. Afterwards: No Evidence of Disease!

Re: Stage 4 Vulvar Cancer

Posted by Cynthia Mac on Nov 24, 2019 8:22 am

FunnyBunny‍ , I’m also sorry to hear that treatment option for your mom have been reduced. 

Please remember to find a few moments or hours to care for yourself. It will help you to continue supporting her through this.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Stage 4 Vulvar Cancer

Posted by Redrocket on Dec 14, 2019 9:09 am

Hi there, 

I'm so sorry that your mom is going through this and you and your family as well.  My vulvar cancer was stage 1 so I was very lucky to have caught it early. Sadly there is such little research on this cancer it's hard to find anyone to talk to. For me the oncologist was able to surgically remove all of the tumor and no spread but I haven't experienced lymphedema yet but its still possible as it's only been 2.5 months since surgery.  I do believe in medications but I also believe in alternative treatments to add to the process if safe. You can also find topical creams to help with cbd oil in them for pain or discomfort if needed. I'm 49....your mom is young still I hope with the grace of God she can fight this with your support by her side.

Xo