MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Hello, My name is Mike and I'm reaching out through this forum in an effort to find those individuals with similar diagnosis and test results.   Here is my story, diagnosed with Malignant Melanoma on October 30th 2014 by my dermatologist.   She explained that the mole on my back was malignant and that due to the depth of the cancer cells (5.5mm) and that it was not ulcerous, that I was Stage IIb.   She referred me to a Plastic Surgeon and an Oncolagist with the Cleveland Clinic.  In meeting with the plastic surgeon I was told that the treatment approach was aggressive.  On December 2nd, 2014, I had the radioactive dye and scan, along with the excision of the original mole/tumor site on my back.   They removed the one and only lymph node that showed the dye in it, from my right armpit.   Biopsy report of this lymph node showed that I had cancer cells in the node up to 50%.  The biopsy report on all the meat they took out of my back was also negative. The oncalogist ordered up an MRI (without and with contrast) and a PET/ CT scan. Both came back negative.  Last Thursday (January 15th, 2015) I had all the lymph nodes removed from my right armpit (23 of them).  Yesterday in my surgery follow up appointment, I was informed that all 23 lymph nodes had no cancer traces in them.   I meet with the oncologist on the 26th to discuss treatment options.  

I am a 52 year old male in very good shape.  I am a single parent of a 16 year old and a 19 year old.   I am weighing the scales of decision making as it regards the Interferon Alpha immuno therapy treatment drug.  I have concerns about the side effects during treatment, and the potential side effects that could last the remainder of my life.   My daughter is at home with me and my son is away at college for 8-9 months of the year.  If I were to choose the Interferon, I have a fear that I would put my daughter in a position as care taker for me for the first month - 2 months of treatment.   I have a fear of losing my job if the side effects were so severe that I couldn't work.

I guess what I am looking for is individual(s) who have had very similar diagnosis and test results and what path they took.  I'm not looking for someone to make my decision for me.   I would just love to hear from people that have been through it.   Thanks.   Mike

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Hello, 

I am here to help my dear friend of 40+ years... I work in the brain cancer field and she reached out to me for help with her dad who was dx with Spindle Cell Melanoma in December.  Her dad is 79 and otherwise healthy.  He presented with a bump on the top of his head... No lesion, no mole... a bump from the inside of his skull (very tip top of his head).  He noticed it back in May and had his dermatologist check it again in September... Nada... No biopsy until December.  

Breslow Depth of 4.4mm, Clark Level IV, mitotic rate of 3. 

The confusion is that the oncologist suggests Wide excision with Sentinel lymph node biopsy, but the head/neck surgeon says no to the SLNB... 

I have been reading up on Desmoplastic  Melanoma vs Spindle Cell Melanoma. Not sure I fully grasp the differences yet... trying to play catch up here prior to his Surgery on Monday for a very wide excision and difficult fix job... Either will need a skin graft or a Free Flap (live tissue transfer from his left arm). 

I would love to talk to anyone with experience here... Reading up on this is confusing. 

 

Thank you!

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triggerfish's picture
Replies 6
Last reply 1/27/2015 - 5:15pm
Replies by: warrior4dad, triggerfish, Anonymous, Becky, washoegal

Hello all!

Here again with another question.  My Dad's Melanoma is of the spindle-cell nodular variety, which in my understanding is a bit on the unusual side.  Here's my hangup though.  It seems when trying to research this type of tumor specifically, the spindle-cell and desmoplastic terms seem to be used synonymously.  Does anyone out there know if the two are different, or one in the same?  I've been frustrated in my research, as I can't find anything that points me to a way to differentiate the two (if they are indeed even different!).   

When reading the characteristics of desmoplastic melanoma, my Dad's tumor pretty much fits to a T.  Larger in size (4mm), deeper (Breslow IV), spindle-cell makeup, more frequent in older males, usually found on head and neck, lower incidence of lymphatic involvement despite their size (Dad's SLNB was negative, which of course could be a cooincidence). 

Still trying to make treatment decision, and from what relatively little information I can find, it appears that WLE with larger margins (done) and possibly radiation to the site to prevent local reoccurences are the go-to adjuvant therapies.  (Not Interferon, as recommended by his Oncologist) 

Thanks in advance to anyone who has some input! 

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 1/27/2015 - 2:20pm
Replies by: Anonymous, Janner

I am scheduled for a re-excision of dysplastic nevus.  However, I received my path report and would like your input.  Diagnosis:  Compound melanocytic nevus with architechtural and moderate cytologic atypia.  Conservative re-excision is advised.  There is a broad proliferation of enlarged melanocytes arranged as solitary units and as nests within the epidermis, predominantly at the dermo-epidermal junction and within the papillary dermis where there is fibroplasia, telangiectases and a a patchy inflammatory cell infiltrate with melanophages.  There is moderate cytological atypia of melanocytes within the intraepidermal component.

Can you tell me what this means and if re-excision is necessary?

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About 2008 my dad was diagnosed with Melanoma on his head and forehead. The doctor removed it and on both samples it showed clear margins. fast forward to December 4th 2014 my dad was playing poker which is a pretty routine thing since he retired. A lot of the people know him there and noticed that he was acting strange so they called for an ambulance. Thinking he may of had a stroke they did a CT and later an MRI, they found a total of 18 tumors in his brain. The largest ones are not operable because they are so close to the brain stem. They scanned his chest and abdomen and found a large tumor there 4cm x 5cm. It is likely that he has lymph node involvement also. They did a biopsy of the tumor in the lung and that came back BRAF Negative. Not sure really what that means. He has been on steroids for brain swelling, anti seizure meds, and ativan so he can sleep because those steroids were only allowing him to sleep for 3-4 hours. He has had about 10 whole brain radiations done, now we are going to start on immunology and I beleive Yervoy. Metting with the MD on Wednesday. What questions should I ask? I am a regisitered nurse, but my specialty has never been oncology, so I am lost. I am devestated and not ready to lose my dad, I love him so much. Any help is greatly appreciated!!! 

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Jacqueh27's picture
Replies 3
Last reply 1/26/2015 - 6:21pm
Replies by: tschmith

Still waiting on my daughter to get scans after liver embolization and four rounds of YERVOY. Anybody have embolization and if so, how much did your tumor shrink if all?

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Wader's picture
Replies 2
Last reply 1/26/2015 - 4:18pm
Replies by: joelcairo, Momrn5

I ran across this article that really surprised me. It says one glass of OJ a day is fine but two can be deleterious. But the source was published in 2003. I hope there is later research. Does anyone know about the risk?

 

http://www.healthbulletin.org/vitamins/vitamins16.htm

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Something I just read about that may help those with bone cancer:

http://www.scientificamerican.com/article/designed-molecules-trap-cancer...

Sugar-like molecules self-assemble into a nano fiber web around bone cancer cells but spare healthy ones

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MindyD's picture
Replies 10
Last reply 1/25/2015 - 7:17pm

Hi all,

New to the forum, as I was diagnosed earlier this month.  It's been a crazy couple of weeks, and I have learned a lot from stalking this forum.  ;-)

I am one week out from having the WLE and SLN biopsy, which removed 5 axillary nodes - all negative.  Yay!

This puts me at at Stage IIa.  My surgical oncologist decided to submit the tumor for a new test that they've only been doing for about 6 months.  It is called DecisionDx - Melanoma, performed by Castle Biosciences, Inc.  It is a gene expression profile test...  Quote from the site:   "...a molecular test which has been shown to identify tumors at high-risk for metastasis more accurately than the factors currently used by doctors, including the depth of the melanoma (Breslow's thickness)".

My doc says that if it comes back in the Class 2 (high risk) category, then there is a better argument to have further tests/scans to check for spreading, which insurance is more likely to cover.  He also said risk for recurrence would be higher, so we might go ahead with adjuvent treatment.

I am thrilled that something like this now exists, as I did not like the idea of the "wait and see" approach for the next 5 years.  Especially since it had been 6 years since I had seen a dermatologist prior to having this mole removed.  Who knows how long it's been there...  and I've heard several examples of Stage 2 skipping 3 altogether and goind directly to 4. 

From the studies I've read, the accuracy of past patients has been highly accurate.  I should get results in a couple weeks.  In the meantime, I tried to find some threads about this topic, to no avail.  Has anyone had this test done that would like to share their experience? 

Thanks!

- Mindy

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lizp's picture
Replies 9
Last reply 1/25/2015 - 7:11pm

Hi all, I'm newly diagnosed with metastatic melanoma in my left axillary lymph nodes with no previously diagnosed melanoma.  My Onc is recommending a clinical trial of high-dose Interferon Alpha 2B after my surgery, which is this Friday.  I'm afraid of the side effects of the Interferon, just based on what I've heard, but I'm also afraid NOT to do it because I don't want a recurrence.  If anyone has gone through this and can just maybe talk to me about it, or encourage me, I would really appreciate it.  I have lived with the knowledge that some type of cancer was back since around Thanksgiving of 2014 and I just want to get this ball rolling and get it out of me.  Thanks for listening and I hope to hear from someone soon.

Liz

Liz P Metastatic melanoma Stage 2 12/2014 Breast cancer IDC Stage 2 11/2011 Hope springs eternal!

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aquamak's picture
Replies 3
Last reply 1/25/2015 - 2:57pm
Replies by: Anonymous, ecc26, KMick
JoshF's picture
Replies 17
Last reply 1/25/2015 - 1:00pm

What a long day but a good one. Pet/CT came back negative. This is obviously best case scenario. My onc didn't want to say for sure but feels that this could be residual due to immune system possibly not recognizing remaining cells form surgery. I had surgery in mid Spet 2013 and treatment started fairly quick after met was found in lung. I never had the surgery to get clear margins...I do remember the surgical onc saying that it may be necessary to go back in after treatment but it never seemed like a concern after I finished IL-2 last January.

Seeing that I'm NED again, the doc said watch & wait. Ipi was discussed but advised against because of no measurable disease. Again, they feel it's only a local recurrence.  Do they ever really know? I know there is not a lot out there for adjuvant treatment that is either available or effective. Anyone do ipi as "maintenance"?

I feel very blessed and fortunate as PET was clear...still gives me hope that I was repsonder to ipi & HD-IL2 combo trial I'm in. Things can always be worse but just having the beast involved in your world at all is stressful; which is why I appreciate each and everyone of you for your support, advice, inspiration and encouragment. Wishing everyone the best!

Josh

Let's work for better treatments....for a cure!!!!

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melfighter's picture
Replies 8
Last reply 1/25/2015 - 5:12am

My husband started Xvega last Monday, he seemed fine the 1st 2 days, but around Wednesday, he started feeling very tired and weak. The last 2 days he has not been able to get out of bed, just very tired and very weak. Prior to Xgeva, he was actually feeling much better and with the radiation to his back & sacrum,  he felt the pain was much more manageable.

I read that tiredness and weakness are side effects of Xvega, has anyone experienced the same thing? Is this temporary? 

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Shelby - MRF's picture
Replies 4
Last reply 1/25/2015 - 12:42am

Dear MPIP Community Members,

Last week, Dr. Keith Flaherty recorded a webinar with us to provide an update on the research and key findings presented at the November 2014 SMR (Society for Melanoma Research) meeting held in Zurich, Switzerland. To access the webinar, please click here. Your name and email address are requested to track the number of visits only.

If you have any questions, comments or topics for future webinars, please contact me directly at education@melanoma.org. Have a great evening!

Sincerely,

Shelby - MRF

About Dr. Keith Flaherty

Dr. Flaherty is director of the Henri and Belinda Termeer Center for Targeted Therapies at the Massachusetts General Cancer Center and Associate Professor of Medicine at Harvard Medical School. Dr. Flaherty’s research and clinical focus is therapies for melanoma, with a particular expertise in targeted therapies.

About the Society for Melanoma Research

  • The SMR is an organization of scientific and medical investigators devoted to alleviating the suffering of people with melanoma
  • It was founded to unify the field by increasing communication among researchers and building bridges of collaboration between basic, translational and clinical investigators
  • The SMR holds annual meetings to provide researchers an opportunity to collaborate, meet and share ideas about all forms of melanoma research

 

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RGal's picture
Replies 3
Last reply 1/23/2015 - 3:33pm
Replies by: RGal, Anonymous, MattF

My father's melanoma is now metastasized to his lungs.  Awaiting PD-1 trial which starts in week.  He has been complaining of major aches and pains in his bones.  I am fearful it could have spread to his bones.  Is that even possible?  This waiting for treatment to begin is so hard.  Thanks.

 

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