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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ecc26's picture
Replies 8
Last reply 1/28/2015 - 7:33am

Hello everyone, 

It has been a very long time since I've had a presence on this board. I was hired by our local university in July last year and have been so busy between my treatment schedule and work obligations that I have completely lost touch with this board and the people who are on it.

I am happy to say that I am doing very well. I started PD-1 last June in Boston, which only lasted for 4 doses before the discovery of a 3.5 cm mass in my brain put things on hold. The mass was surgically removed in September and I did well enough pre and post surgery to only delay my next PD-1 by a week. By then FDA approval had come through and I've been able to get my infusions here at my local hospital, which has been very nice. My scans continue to improve, with my last CT in December and my last MRI on Jan 14 (they are not grouped together due to the craniotomy). The hope is that perhaps by this time next year things will have shrunk down enough or been stable long enough to consider a trial period without infusions. I haven't had the best of luck in the past with things lasting (or even working), but I hope that this is the one that does it for me. I had forgotton what it felt like to not live in such constant fear, though I don't trust things quite yet.

I'm really enjoying my job and feeling well enough to do that and get back into a regular exercise routine, etc. I'm aware that some of you are not getting the results you were hoping for and all I can really say is that I'm pulling for you. 

Wishing everyone out there the very best and hoping that you find the thing that really works for you!

-Eva

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BrianP's picture
Replies 7
Last reply 1/28/2015 - 7:20am
Replies by: Maureen038, Jubes, Anonymous, Julie in SoCal, Bubbles, Mat

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Replies by: Maureen038, arthurjedi007, JustMeInCA, JoshF, Bubbles, Anonymous

Among everything else I'm dealing with they found out the reason my right hip was hurting a lot is because the hip ct yesterday showed a lesion there. He said that was not there on my November petct scan. Since I've been on keytruda since May with a few tumors showing minor growth but no new tumors and other tumors shrinking does this now mean keytruda is failing me so if I get through my current issues I gotta get on a different systemic treatment fast? radiation to hip starts soon to end at same time as rest of radiation.

Artie

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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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kluft's picture
Replies 4
Last reply 1/26/2015 - 9:21pm
Replies by: Anonymous, sharebear

On Friday I wen to my new oncologis for results of my latest PE scan and the results were not at all what we expected. After 4 doses of Anti PD1 drug Keytruda my cancer has spread.. So frustrated. Now recommending I take Arbrane (chemo) to stablize the cancer till a clinical trial opens at SCCA . I felt so blindsided that I forgot to ask about the trial. Has any used Abraxane ?? What were the side effects. 

 

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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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FayFighter's picture
Replies 4
Last reply 1/26/2015 - 4:47pm
Replies by: FayFighter, JoshF

Hi Warriors

Last time I posted it was good news; 30% reduction in liver lesions.  However, it seems the inhibitors are petering out now.  Next best step?  We love team at MSKCC but you guys always get me thinking.  All advice and suggestions welcomed.

 

Recap;

Husband is 45 y.o. Irish, blue eyes...raised on the jersey shore (lots of sun exposure).

July 2010 Melanocytic Nevi removed from left calf. 

F/U with Derm exams x1/6 mos

June 2013 Nodules appear under skin on left calf. We thought they were vericose veins.

July 2013 Swollen left lymph node in groin area. Biopsy.  Melanoma. BRAF WT.

Slide from 2010 reread by MSKCC as melanoma in situ

August 2013 Lymphadenectomy of left groin.  Just uppers Cloquet node negative.  5/19 nodes positive.

October 2013 Start Yervoy

November 2013 Radiation to Lymph node basin of groin

January 2014 Prednisone needed to control colitis from yervoy. Genomic Studies show NRAS positive.

March 2014 End Prednisone

April 2014  PET/CT Scan shows 3.5 cm lesion in fundus of stomach. Confirmed through biopsy.

May 2014 start PD1/KIR trial

July 2014  too much bleeding from stomach tumor.  Surgery to remove. 

July 2014 Scan shows mets to liver.  numerous.

August 2014 Start MEK/CDK4

October 2014 30% Reduction in liver lesions

November 2014 20% more reduction

December 2014 Stable Lesions.  Heart EF low...need to lower doses

Today Scans...new Liver lesions.  Subcutaneous lesion on back.  Maybe on ribs.

 

Options: checking HLA-A2, if positive candidate for IMCgp100 (Monoclonal T Cell Receptor anti-CD3 scFv Fusion Protein) IMMUNOCORE trial at MSKCC.

Options: Speaking with NIH nurse tomorrow about IL2 trial eligibility.

 

We did a big tumor genetic profile test of in September at MSKCC.  Still waiting for results.

 

What would you do?????

 

Thanks in advance,

 

Angela (wife of Mike)

 

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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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