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Thread: Vaginal Mucosal Melanoma

  1. #51
    Regular User
    Join Date
    Jun 2015
    Posts
    27
    Hi Cheri,

    Last few months have been a whirlwind of health problems. Many emergency room visits and hospital stays. Mom has been in a rehab facility for the last 2 weeks trying to regain enough strength to make it back home. I really believe that these issues have been more side effects to morphine and fenyanyl patches.

    On the great amazing and excellent side of things OPDIVO has had amazing results at the primary tumor. The first treatment was 10/14. Within a few days there was substantial and very concerning and painful increase in swelling at the primary site. 6 days after the first treatment mmo ended up hospitalized with vertigo for 1 night. The following week the swelling had gotten so bad we went to the gynonc office so she could check the urinary catheter. Ended up having to have the ambulance come to the doctor's office and take her to the hospital. Her oncologist felt so strongly about continuing the immunotherapy she made arrangements to have it done in the hospital room. Within 24 hours of the second treatment the vaginal swelling had decreased rapidly. She just had her 3rd treatment last friday. Side effects have been minimal and the vaginal swelling is pretty much gone. It has been amazing. I really feel that my mom's other health problems and reaction to medications have been causing the problems rather than the immunotherapy. If you want more info or are interested in seeing the pics of the changes let me know and I will pm you.

    BTW do you belong to the mucosal melanoma warrior facebook group. They have been a great source of info for me on immunotherapy.

    Thank you thank you thank you Cheri - love and prayers are always coming your way.

  2. #52
    Senior User
    Join Date
    Jan 2014
    Posts
    326
    Wow, I am so sorry your mom has had to undergo all the swelling and pain and the other health issues that have had her in and out of the hospital and in the rehab facility the last 2 weeks. I agree, morphine and fentanyl are strong medications and who knows what side effects they might be having. She has been through so much!! - and you too, as her daughter! Are you doing OK?

    But the news about the Opdivo is just awesome!! That was so inspiring for me to read. I am thrilled to hear about her response to that, and it gives me hope, too, in case my situation ever progresses. So far I remain melanoma free, except for a small area on my lower back removed a few weeks ago that came back pre-melanoma, but I am not even sure the two types of melanoma are related, and otherwise my last PET-CT was clear. I am so excited for your mom that she has responded so well to Opdivo with this last treatment!

    I would love to see pictures of the changes. How many treatments total will she be receiving?

    Will be praying for your mom's quick recovery and ability to come home soon and hopefully with little to no need for pain medications!

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

  3. #53
    Senior User
    Join Date
    Jan 2014
    Posts
    326
    Hi Deena,

    Just a shout out to see how you and your mom are doing. Is she still on Opdivo? Has she been able to come home?

    Thinking of you over the holidays and hoping they have been happy and pain free with things continuing to progress in the right direction!

    You and your mom are two of my favorite melanoma warriors. You are always in my prayers.

    Cheri
    Vulvar mucosal melanoma, superficial spreading type, stage I-II, depth 1 mm with regression
    Radical right-sided hemivulvectomy, clitorectomy and bilateral sentinel lymph node biopsies, May 2013, lymph nodes clear
    PET CT, NED, July 2013
    Partial left hemivulvectomy/reconstructive surgery Oct 2013, found melanoma in situ on pathology, out to margins
    November/January - Underwent 9 vulvar biopsies to try to locate the MIS for surgical excision, unsuccessful
    May 2014 - Third vulvectomy/second left hemivulvectomy for wide local excision of MIS, MIS not identified on pathology
    PET CT, still NED, June 2015
    PET CT, NED, June 2016
    No sign of recurrence, January 2019

 

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