A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 2 of 6 FirstFirst 1234 ... LastLast
Results 11 to 20 of 53

Thread: Vaginal Mucosal Melanoma

  1. #11
    Senior User
    Join Date
    Jan 2014
    Posts
    326
    dmr, that is excellent news! I am so happy to hear that her scan is clear. It sounds like she will also be in great hands for surgery and followup.

    Here's hoping for an uneventful surgery and clear lymph nodes!

    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

  2. #12
    Administrator Top User Kermica's Avatar
    Join Date
    Jul 2009
    Posts
    6,594
    dmr, that really is about the best news your mom could get at this point. I am really happy to hear this, good luck with the surgery.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 67
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxan, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.
    February 2015 - Doc and I agreed to stop R maintenance as it is depressing my immune system too much.
    June 2015 - Confirm that the beast is back by physical exam, will scan in August after esophageal issues settle down so we can get a clear view.
    August 2015 - physical exam in error, PET/CT shows no evidence of disease. Remission continues well into second year!
    December 2015 - Cardiologist tells me I have plaque buildup growing at an alarming rate. Stent or bypass down the road but not yet...
    March 2016 - new tumor below the jaw so remission is over. Back to active surveillance until treatment is needed.
    June 2016 - C/T scan indicates presence of multiple lesions in iliac chain.
    August 2016 - PET/CT shows multiple areas of lymphoma as expected plus new areas of concern in bowel.
    January 2017 - C/T scan shows significant progression in cervical and inguinal lymph chains, largest tumor is impacting hearing, measures 2.1x4.6 cm. 4 to 8 cycles of R-CVP, 1x3weeks to commence 2/6/17.
    April 2017 - Mid treatment scan shows about 1/3 reduction in multiple tumors. Also shows abdominal aortic aneurysm with peripheral thrombus. Cardiologist changed meds, spoke of need for surgical repair down the road.
    September 2017 - finished 10 rounds of R-CP, V was stopped due to neuropathy in feet. No further treatment planned at this time, at least 10 tumors can be felt which seem to be growing again.
    December 2017 - Biopsy of external iliac node with SUV of 13.1 shows no transformation! However, the FL grade is now 3A instead of Gr 1-2. Will start indefinite protocol using Copanlisib, one of the new targeted therapies. I remain hopeful.
    March 2018 - Copanlisib failed, treatment stopped 3/28. New plan is to go to Dana Farber on 4/16 for case review and treatment recommendation.

    May 2018 - did not qualify for clinical trials at Dana Farber. Tumors need to get larger to be considered. On consultation w/Dr. Armand at DF and my onc, have decided to take a break from cancer treatments. Will have a biopsy of the mass in my sinus discovered in scan at DF and to get the aneurysm repaired as it has developed a potentially catastrophic penetrating ulcer. Surgery scheduled for 7/12.

    September 2018 - biopsy of mass in nose shows transformed DLBCL throughout. Assessing options for this negative development.

    October 2018 - started 6 to 8 cycles of R-CHOP. Goal is to get to full remission to open up other options.

    February/March 2019 - PET shows four hot spots following R-CHOP. referred to Dana Farber for stem cell transplant. Pre testing all good, accepted for Auto Transplant. Will begin inpatient process about April 1.

  3. #13
    Regular User
    Join Date
    Jun 2015
    Posts
    27
    OHSU Tuesday at 9am. Can't wait to start getting something done. They originally scheduled my mom for a consult on July 22nd. I am so greatful her oncologist called them and got them to move us up on the calendar.

  4. #14
    Regular User
    Join Date
    Jun 2015
    Posts
    27
    My mom is scheduled for surgery 7/20 at ohsu in portland or.

  5. #15
    Senior User
    Join Date
    Jan 2014
    Posts
    326
    So glad, will keep you and your mom in my thoughts! So happy you are moving forward!

    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

  6. #16
    Regular User
    Join Date
    Jun 2015
    Posts
    27
    I am getting so nervous as surgery date approaches. My mom is getting freaked out and scared. She has opted to not know anything about this cancer. I have opted to know too much about this kind of cancer. I must have printed off and read 500 pages of info, studies, survival rates, treatments, and personal stories. In general it has just been heartbreaking for me. Every doctors office has been full of people telling her how sorry they are. Not a single story of I knew someone who had that and beat it. Plus the tumor has been growing. It was originally so small the first Dr. couldn't find it. It took a sedative, speculum and stirrups to see it. It has now grown out of the vagina and is now visible protruding out of the vagina. First thing Mon am they are going to inject radio-opaque dye into the tumor to trace which lymph nodes are affected. Then off to surgery to remove the tumor and the necessary lymph nodes. I'm hoping, praying and begging that this rapid growth hasn't made this an impossible surgery to do. Also hoping it hasn't metastasized during this growth period.

  7. #17
    Senior User
    Join Date
    Jan 2014
    Posts
    326
    Oh dmr, there is no question this is a scary cancer to have. I know, it has been scary for me too, though mine is vulvar. BUT....I am 2 years and 2 months out from my diagnosis with no evidence of disease on my most recent scan. More significantly, there is a poster here who had vaginal melanoma diagnosed around the same time I did, her lymph nodes were in fact positive, which put her at stage III, and she is also 2+ years out from surgery and still free of disease.

    So there is reason to hope!!

    We know your mom's scan was clear, and that is still wonderful news. If her lymph nodes return positive, she may be offered immunotherapy with one of the newer drugs, some of which have had very impressive results. Often those drugs are not indicated until the cancer has spread, which your mom's has not, according to her scan. In which case, her specialists may take a watch and wait approach, following her closely with scans and skin checks. We do require very close followup. But again, the poster here with vaginal melanoma had positive lymph nodes and is still doing well 2 years later.

    Also, be very careful with anything on the internet that was published before about 2013. Things are changing so rapidly! Much of the material goes rapidly out of date.

    There is no question that ours is a form of melanoma to take seriously, but I truly believe you have good reason to be hopeful!

    I will be thinking of you and your mom on Monday. Hoping the surgery goes smoothly and your mom recovers quickly!

    Cheri

    P.S. I have a thread on vulvectomy around here somewhere. There is a woman who posted on that thread saying she had a great deal of pain for a long time afterward, but that has not been my experience and so far she is the only one I know of with that experience and I'm not actually sure what the difference is. I just mention it in case some of it might be helpful. After 3 vulvectomies, I finally started to figure out some ways to make it a little easier on myself.
    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

  8. #18
    Regular User
    Join Date
    Jun 2015
    Posts
    27
    Thank you Cheri - you are truly the only person who has made me feel better about this. There is hope. - Deena

  9. #19
    Regular User
    Join Date
    Jun 2015
    Posts
    27
    We got home from the hospital today. Surgery day was really rough but mom is doing pretty well now. The good news is surgery is done. They took the left groin lymph nodes. Dr. Vetto who is a melanoma specialist at OHSU did that portion of the surgery. He dissected a couple of lymph nodes at the time and told me they were normal in appearance. He feels good about it but said we will have to wait for the pathology report - 5 to 7 days. The urologist was able to save the urethra so hopefully that will also be good news. My concern there is that the gyn/onc surgeon is concerned that they did not get clean margins on the tumor. It was impossible to get a clear margin near the urethra. They just peeled the tumor away from the urethra. We are of course waiting on that pathology report also to confirm her suspicion. She mentioned radiation follow up or possibly immunotherapy with Dr. Vetto. I am just sick about not having clean margins but thankful it went as well as it did. I will update when I learn more.

  10. #20
    Senior User
    Join Date
    Jan 2014
    Posts
    326
    So glad you mom is through the surgery and home doing ok. Will be hoping for clear lymph nodes on pathology! My understanding is that in cases where they can't get clear margins, which can be difficult in that particular part of the anatomy, radiation and/or immunotherapy can be very effective. If I had not had the third vulvectomy, they were going to do radiation on me. The melanoma they found on my second surgery had gone out to the margin on one side, but as it was, we never did find additional melanoma in that area, even when they went back in and did a third vulvectomy in that region.

    Anyway, just happy that it all went well!

    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

 

Similar Threads

  1. Does anyone have mucosal melanoma? Eye, tongue, vulvar, vaginal?
    By CheriD in forum Melanoma and Skin Cancer Forum
    Replies: 43
    Last Post: 12-27-2016, 04:56 PM
  2. Vaginal brachytherapy
    By Callianna in forum Uterine and Endometrial Cancer Forum
    Replies: 14
    Last Post: 04-26-2014, 02:21 AM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •