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Thread: Father Diagnosed with MELANOMA - November 2016 (Stage 3C) ......

  1. #1

    Father Diagnosed with MELANOMA - November 2016 (Stage 3C) ......

    Hello, I am new to the forums and also have posted under the Leukemia forum about my father. He is 70 years old and has multiple health issues and in November 2016 he was diagnosed with Melanoma via a mole that was on his left side mid-flank / back area. (Current medical issues 2015 diagnosed with CML (chronic myeloid leukemia), diabetes for several years (adult onset), IgA nephropathy (auto-immune kidney disease - currently ok), he was diagnosed with A-Fib (Atrial Fibrillation) that is currently under control after 2 Heart Ablations and meds).

    Regarding the Melanoma. The oncologist surgeon removed the Mole Area after it was biopsied and confirmed Melanoma in November 2016 and the margins were all clear - and the Sentinel Lymph Node biopsy revealed that there was malignant Sentinel Lymph Nodes. This then was followed up in January 2017 with a complete lymph node dissection under his armpit and all the rest of those lymph nodes all tested *NEGATIVE* - which I feel was extremely GOOD / GREAT news ...... However, the cancer doctor explained that although that was good - he is still classified as Stage 3C Melanoma with a change of distant organ metastasis of about 75% - 80% which was devastating news ....

    The cancer doctor did NOT want to do chemo or radiation as he feels this would NOT improve the chances of whether or not the melanoma will spread and would NOT justify any quality of life difference. So the cancer doctor opted for a 'watch and wait' scenario. PET SCANS and BRAIN MRI's every 3 months .. then possibly every 6 months - with regular follow ups with him as well as a dermatologist.

    I'm scared to death - as is my father - that this will progress. Is there any hope that it will NOT progress and after the complete lymph node dissection we will be ok ? My father has gotten very VERY depressed - and I'm trying to keep him upbeat and positive - but it's very very hard. Please let me know your thoughts / experiences ... thank you !

  2. #2
    Newbie New User
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    Did you ever get a reply? I can't see one. I have a melamoma and would like to say something reassuring.

  3. #3
    I never did get a reply - I'm hoping to get some replies. My father is due for a PETSCAN within the next two weeks, lately (the past 3 weeks) he's been very fatigued and very weak. He has been "off" the Sprycel (which is for his CML (chronic mylogenous leukemia) for almost a month (since his Admittance in Hospital on May 20 for Pneumonia due to the Sprycel side affect) - so to be this 'weak and fatigued' for 3 weeks WITHOUT being on Sprycel - I'm very VERY worried ....... I'll post after we get his PETSCAN results. His most recent Brain MRI that was last week was fine - but I'm so nervous about the PETSCAN.

  4. #4
    Dear CruiseMermaid: Unfortunately leukemia is a rare disease, and as such there aren't many people (if any) to respond. I have AML instead of CML, and since it's refractory about all the doctors say is "You're a Dead Man Walking!!!" No stages, no PSA, no Gleason, no nuthin.... About all I can suggest is to post your message in the "Worried about Cancer" forum and you might get some response. Good luck!!
    05/6/16 pre-op physical for surgery show low WBC & RBC
    5/22/16 [Birthday] Results of BM biopsy: AML 25% blasts with inv t(3:3) mutation, HIGH risk
    5/30/16 Undergo 3+7 chemo, but it doesn't touch AML, infections nearly kill me. Blasts 65%
    7/04/16 Diagnosis now Refractory AML. [:tombstone:]Six cycles of azacitidine, 21 shots over 7 days w/ 1.5" needle into gut + below navel.
    11/05/16 Move to NOLA - Infusion center 4 minutes away. 15 shots for 5 days with 5/8" 25 ga. needle Huge increase in quality of life.
    12/28/16 BMB shows blasts 12%
    4/16/17 BMB shows CD34 16%, cycles dropped to 4 weeks
    7/20/17 Diagnosis changed to "indolent leukemia", aka MDS
    7/27/17 BMB shows CD34 17%
    8/15/17 Venclexta chemo in PILL form added Onc estimates survival time now 2 - 4 YEARS.
    10/26/17 BMB results show 17/20 metaphases with inv(3:3) mutation-low blood cell counts - transfusions ineffective
    12/4/17 Diagnosis: Uncontrolled refractory AML

  5. #5
    Hello Cruise, I'm very sorry to hear about what your dad's been through and the melanoma. I could understand your doc's thinking given there are no actually mets seen. The treatment can be worse than the cure sometimes. However, there are other treatments available now like Immunotherapy. I'm not sure he would be a candidate for these things but you may want to check the web a bit. Remember Jimmy Carter: they found it in his liver and brain and as of last time I heard, he's cured!
    PSA 1.3 8/2014
    PSA 5.9 12/2016 63 yo
    Local Uro DRE 7 mm nodule
    Biopsy 2/2017 +6/12 cores Gleason 3 + 3 (5) Gleason 3 + 4 (1)
    Bulk of tumor is in Left Lobe at the base with extension to R lobe
    Bone scan negative
    MRI T3 scanner Tumor size 8x17x14mm lesion L lobe No capsule penetration, seminal vesicle invasion, pelvic adenopthy
    Prostate volume 27ml
    DaVinci Prostatectomy: 5/31/2017 Dr David Samadi ,Lennox Hill Hospital, NYC
    Pathology Initial pathology: upgraded to G7
    All margins clear, no capsular penetration

    Best of all: No incontinence

  6. #6
    Senior User
    Join Date
    Jan 2014
    Posts
    326
    Quote Originally Posted by TheCruiseMermaid View Post
    Hello, I am new to the forums and also have posted under the Leukemia forum about my father. He is 70 years old and has multiple health issues and in November 2016 he was diagnosed with Melanoma via a mole that was on his left side mid-flank / back area. (Current medical issues 2015 diagnosed with CML (chronic myeloid leukemia), diabetes for several years (adult onset), IgA nephropathy (auto-immune kidney disease - currently ok), he was diagnosed with A-Fib (Atrial Fibrillation) that is currently under control after 2 Heart Ablations and meds).

    Regarding the Melanoma. The oncologist surgeon removed the Mole Area after it was biopsied and confirmed Melanoma in November 2016 and the margins were all clear - and the Sentinel Lymph Node biopsy revealed that there was malignant Sentinel Lymph Nodes. This then was followed up in January 2017 with a complete lymph node dissection under his armpit and all the rest of those lymph nodes all tested *NEGATIVE* - which I feel was extremely GOOD / GREAT news ...... However, the cancer doctor explained that although that was good - he is still classified as Stage 3C Melanoma with a change of distant organ metastasis of about 75% - 80% which was devastating news ....

    The cancer doctor did NOT want to do chemo or radiation as he feels this would NOT improve the chances of whether or not the melanoma will spread and would NOT justify any quality of life difference. So the cancer doctor opted for a 'watch and wait' scenario. PET SCANS and BRAIN MRI's every 3 months .. then possibly every 6 months - with regular follow ups with him as well as a dermatologist.

    I'm scared to death - as is my father - that this will progress. Is there any hope that it will NOT progress and after the complete lymph node dissection we will be ok ? My father has gotten very VERY depressed - and I'm trying to keep him upbeat and positive - but it's very very hard. Please let me know your thoughts / experiences ... thank you !
    Hi -

    I am sorry to hear about all your dad is going through. As far as the melanoma, what I can tell you is that there is ALWAYS a chance it won't spread. Melanoma is unpredictable. I know of people with stage IA disease who become stage IV 10 years later, and I know of people with stage IIIC who are still going strong after 10 years.

    That said, if your dad did progress to stage IV, meaning metastasis to other parts of the body, there ARE many immunotherapy treatments available at that point.

    Up to that point (stage IV), melanoma is treated with surgical excision with wide margins, lymph node dissection when necessary, and close monitoring, how close depending on the stage of the melanoma, its depth, etc., the monitoring meaning regular visits and at more advanced stages, PET-CTs, x-rays, scans, and so on.

    Again, melanoma is unpredictable and you will find people with such a wide variety of stories. Truly I would not waste valuable time and energy worrying about whether or not it will ever recur. My own statistical chances of recurrence are not all that great, but the way I see it, I could just as easily be in the percentage that doesn't recur, and the same is true of your dad. I hope that helps just a little. I know how stressful it can be. And remember, even with the spread of melanoma, there are a lot of new treatments which tend to render the current statistics obsolete as they haven't been around long enough for anyone to try to prognosticate off of them - as the above poster mentioned, Jimmy Carter is a case in point.

    Best wishes to you and your dad!

    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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