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Thread: Matasistized Melanoma

  1. #1

    Matasistized Melanoma

    Hi All
    My sister in law was diagnosed a few months ago with Matasistized Melanoma (started in her rectum, it's rare they say). At that point that had given her a cat scan and it was determined that the melanoma had spread to her liver (both lobes) and one of her breast. She was then sent for a PET scan and it showed that there were spots/noduels in her mammary glands, multiple intra abdominal masses, and suspicion of the bone in one of her humerus (possible marrow) and well as small nodes on one side of her lung.
    She has received her second treatment of opdivo and yervoy and seems to be handling the treatment o.k (no reactions)
    Does anyone have any experience with melanoma spreading throughout the body like this? The doctors are not really telling them much, other then they want to get as many treatments in as possible (every 3 weeks) incase she starts to have a reaction.
    I see the diagnosis and pet scan results as not being very promising. Any success stories and or advice on dealing with a situation like this? I don't think my SIL understands the true impact of having cancer in so many places...so I felt the need to reach out to a community where others may be experiencing the same thing
    Thanks in advance

  2. #2
    Administrator Top User Kermica's Avatar
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    Hi there, SiL, and welcome though I am sorry you have reason to be here. Your sister in law is in a tough fight, there is no doubt about that. However, the regimen she is on has produced some very good results for people who had it during its clinical trials. here is a short article about those outcomes that, I hope, will bring some comfort to you. As an aside, my brother in law passed away from metastatic melanoma four years ago. He did not have access to this therapy and I fervently wished he had as the numbers say that he could well still be with us if that was the case.

    Good luck to your sister in law with every step of her journey. Feel free to post back and we will do our best to respond, to support or to listen, as you need. Here is the study:

    https://www.dddmag.com/article/2017/...nted-aacr-2017

    Good health,

    kermica
    Last edited by Kermica; 05-26-2018 at 12:41 PM.
    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.

  3. #3
    Super Moderator Top User po18guy's Avatar
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    I would be less than honest if I did not say that she is in a fight for her life. Localized (early) cancer of almost any type is a danger, but more of a nuisance in that it must be chemically treated, irradiated or surgically removed. Once its tumor cells have developed the ability to travel, the difficulty increases exponentially. Still, much progress has been made and someone survives every form of cancer. It might as well be her.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TREC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measureable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial of drug KD025, a ROCK2 inhibitor that is believed to help with chronic GvHD.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    To date: 18 chemotherapeutic drugs in 9 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 4 post-transplant immuno-suppressant drugs, the equivalent of 1,000 years of background radiation from scanning from 45+ CT series scans and about 24 PET scans. Having had both lymphoid and myeloid malignancies lend a certain symmetry to the journey.

    Believing in the redemptive value of suffering makes all the difference.

  4. #4
    Senior User
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    I am so sorry to hear about your sister-in-law. This forum is a wonderful place for support. The type of melanoma your sister-in-law has is considered mucosal. It affects mucosal surfaces, including rectal, and is very different from cutaneous melanoma, which is by far the most common. Mucosal melanoma is aggressive and it is important your sister receive the best possible care, so I would strongly recommend she seek treatment, or at least consultation, at one of the major treatment centers where there are melanoma specialists. There are quite a few in the United States, including MD Anderson, Sloane Kettering, Moffitt in New York, and quite a few others.

    I also wanted to add there is a very nice Facebook forum for people with mucosal melanoma, called Mucosal Melanoma Warriors. The people there are all at varying stages and there is a great deal of combined experience and many personal stories to share.

    Wishing you all the best!

    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

  5. #5
    Quote Originally Posted by CheriD View Post
    I am so sorry to hear about your sister-in-law. This forum is a wonderful place for support. The type of melanoma your sister-in-law has is considered mucosal. It affects mucosal surfaces, including rectal, and is very different from cutaneous melanoma, which is by far the most common. Mucosal melanoma is aggressive and it is important your sister receive the best possible care, so I would strongly recommend she seek treatment, or at least consultation, at one of the major treatment centers where there are melanoma specialists. There are quite a few in the United States, including MD Anderson, Sloane Kettering, Moffitt in New York, and quite a few others.

    I also wanted to add there is a very nice Facebook forum for people with mucosal melanoma, called Mucosal Melanoma Warriors. The people there are all at varying stages and there is a great deal of combined experience and many personal stories to share.

    Wishing you all the best!

    Cheri
    Thanks Cheri,
    We are in Canada, and they would be unable to afford to pay to go to the US and for the treatment there. She is currently receiving the treatment I listed in my first post and medication for pain management. The doctors at first told her that if she did not respond to the treatment she only had weeks to live. She has received her 2nd treatment so that is a good thing. She has been eating what she can and sleeping more often. She is currently at home with nurses coming to check on her daily. I don't feel as if the doctors are giving them much information and I think they are to overwhelmed to ask the questions. Being in Canada in the Atlantic provinces there are not many options for finding different doctors, having said that she is dealing with a cancer center and hopefully they can do what they can.

  6. #6
    Thank you for your response. Your right, not a group you want to join, but thankfully there is one.
    I know she has a serious fight in front of her, and praying all goes well.

 

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