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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Anonymous's picture
Anonymous
Replies 8
Last reply 1/20/2012 - 8:16pm

I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they "backed into" the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!

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SABKLYN's picture
Replies 3
Last reply 1/18/2012 - 6:54am

I was recently diagnosed through a sentinel node biopsy with Stage 3a melanoma. My pathology was very unusual and most physicians I have dealt within this short time, have told me they "backed into" the diagnosis. As such, they are treating it as though it is melanoma. I had PET and CAT scans which were clean. My doctors at Sloan Kettering believe that I may be as well off with ultra sound observation every three months as with total lymph node removal. They are offering both options. Any thoughts? Thanks in advance!

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Lilylove414's picture
Replies 2
Last reply 1/14/2012 - 10:49am
Replies by: Lilylove414, washoegal

So this morning I had an appointment at Blue Ridge Cancer Care with Dr. Mertin. She is so great! I told her all about how my cancer was diagnosed and she was shocked I've had to wait so long to start treatment. So she has me scheduled for a PET scan since it's been 3 months. Then next Thursday I have an appointment with her PA to talk about treatment side effects. The week after I have a surgery consult to get the rest of my left arm lymph nodes out. This is the progress I should have gotten months ago and I'm not planning on returning to UVA. Praise God for good doctors!

If God is for us, who can be against us?

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rjcravens's picture
Replies 1
Last reply 1/13/2012 - 7:21pm
Replies by: FormerCaregiver

I have been doing my interferon since May. Besides the typical side effects i haven't had any problems in the past couple months. Today, my oncology office called to say my triglycerides were over 500 and they scheduled me an appt with the endocri doc. What does this mean? Is it just due to the interferon or could something else be going on? I am satge 2b.

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lizzykittycat's picture
Replies 1
Last reply 1/13/2012 - 5:37pm
Replies by: washoegal

hello again,

well... i wanted to follow-up to my post from a few weeks back.  i had a total dissection of my left groin last thursday.  thank you to everyone who responded to my questions and gave me advice about my lymphedema, etc.  i didn't expect the most painful recovery based on what some of you said you experienced.  i guess it's not THAT BAD compared to my excision on my calf when i was really supposed to stay off my feet 100%.  i'm finding this more painful at the groin area, but at least i can walk around the house when necessary.

so i saw my surgeon today for my biopsy results.  just to catch you up, my 2 sentinel nodes were positive for micro mets.  i've been counting the days down for results on the rest of them.  especially since i really struggled with the decision to even have the surgery.  i have a very large fear of lymphedema since my foot and ankle were swelling badly after the excision.  the good news is that with my drain, the foot swelling is reduced A LOT.  so even if temporarily, i'm having some relief from the pain.

my surgeon tells me... things look ok BUT... sit down.  so, he proceeds to explain that there were 5 nodes tested and they were all cancer free.  GREAT NEWS except that he doesn't want me to breathe freely just yet.  he felt that finding only 5 nodes was a lower number than average.  so he has requested that the pathologist further dissect (melt fat tissue or something) to be sure that they didn't miss any nodes that could be pos or neg.

so my waiting begins again.  he said he will call in 5 days or so.  i'm feeling good about what they did find. although that means the dissection may have been for nothing, at least i have some peace of mind that i didn't leave cancer filled nodes sitting in my body undetected and untreated.

my dr tells me that a normal # of nodes in a cluster is 10-15.  he did say that it wouldn't be impossible that i only had 7, but he just wants to be sure.  does this seem like craziness?  has anyone ever heard of anything like this before?

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Merrill Goozner's picture
Replies 1
Last reply 1/14/2012 - 8:16am
Replies by: RMcLegal

Hi,

I am the senior correspondent for The Fiscal Times, a relatively new publication available here (http://www.thefiscaltimes.com). I am writing a story about the high cost of new cancer drugs coming to market in recent years. Two approved by the FDA for melanoma last year were Yervoy and Zelboraf. I was wondering if there were any melanoma patients on this message board who have struggled with affordability issues in obtaining these new drugs. You don't have to have forgone using them because of cost, but that may have happened in some cases. If you are willing to share your story, please contact me offline at mgoozner@thefiscaltimes.com.

If I have offended anyone by this request, please forgive me. I have already interviewed the executive director of the MRF on the general issue, and was hoping to gather some individual stories to humanize my article.

Sincerely,

Merrill Goozner, Senior Correspondent

The Fiscal Times 

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JoshF's picture
Replies 10
Last reply 9/18/2013 - 12:15pm

HI All-

Some of you may have read my posts in the past. Please bear with me on this...I am very confused and appreciate all the support. I have finally been told that I am Stage 4. Confusing part....here we go....in April 2011 I had a bump removed from my right cheek that my derm thought was cyst. Well it mas melanoma and pathology said it was meatstatic melanoma. My derm was shocked to say the least as he has never noticed anything on my skin. He was concerned obviously but felt this was odd case.

I found a specialist and he did protocol of getting pathology slides and ordered WLE of cheek and SLNB. Surgey path came back with clear margins (diameter was 5.7mm) and SLNB was negative. He had felt intially that this wasn't metastatic but rare presentation with no epidermal component. I since have had numerous moles removed...a few dysplastic but mostly benign. I have had a chest/neck, abdomen/pelvis and brain MRI in Nov/Dec 2011....all negative, though there was a spot on liver where I had an MRI and it was determined to be a hemangioma. There was also a cyst in sinus area that was of no concern. I went to another specialist as I am not comfortable...and was told today that I am stage 4 since there was no epidermal component. Doc feels I'm low risk for recurrence but I will follow stage 4 treatment protocol without any immunotherapy/chemotherapy as I am about 8 months out for surgery and there is no benefit. The pathologist is ordering up unstained slides to do own testing. He also wants me to do annual eye exams and have a mucosal exam. I'm not sure about my prognosis and wonder if anyone out there has had a similar experience. Thanks.

 

Josh

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

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I just had a lung tumor taken out which turned out to be melanoma (after 3 years NED after initial diagnosis on back, with progression to one sentinal node and removal of all the associated lymph nodes).

Options presented today were watch and wait, yervoy, and wait to see if I have the BRAF mutation and try the pill.

My surgical oncologist recommended Yervoy.  Anyone take Yervoy even though they didn't have any detectable tumors?

Thanks,

Chris

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NYKaren's picture
Replies 2
Last reply 1/19/2012 - 10:44am
Replies by: MariaH, NYKaren

Hello everyone,

I saw Dr. Wolchok yesterday.  Now it seems there is more hope for me to get into an Anti PD-1 trial, so we're putting chemo on hold.

BMS trial of MDX 1106 is supposed to be allowing the removal of ipi for those previously on ipi --was supposed to happen before end of 2011, so waiting for that.   

The Merk trial only allows for 2 previous systemic treatments, and chemo would be #3 for me, so...  

In the  meantime, Dr. Halpern will try to manage the satellites w/laser so, here's hoping and praying.

Wishing everyone a good weekend,

karen

 

Don't Stop Believing

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Lina's picture
Replies 4
Last reply 1/12/2012 - 10:30pm
Replies by: Lina, Janner, lhaley

Hello, everybody. It really great to find so positive forum. I am 37, from Holland,mum of 17 years old daughter.à week ago, noticed very small mole on my leg ,that wasn t so dark before. Dermatologist 99 % sure that it is melanoma, but I still waiting for results of biopsy.this 2 weeks is really hard time for me, just terrible nightmare... But this forum made me think a bit positive.. That melanoma is not a dead sentence .. Through this mole was growing leg hair, so dermatologist says that it is a good sign. May be someone can explaine me,what she meant with that ? Thanks a lot, for organizing so supportive forum. Feel really crashed... Have no idea how I can bring this news to my family. Regards. L

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Lauri England's picture
Replies 5
Last reply 1/13/2012 - 4:13pm

I had my PET-CT scan today.  It took 2 hours.  Wow.  What a scan.  Anyway I pray all is well.  My doctors office will have the results back by Monday the Radiologist office said.  My appointment to get the results is not until next Thrursday but I of course will be on the phone with Onc Office Monday.  I am impatient I guess.  I got a copy of the 2 scans I had in 2010 and the one from Oct 2011 to compair and radiology office said they only wanted my last most recent one.  Crazy thing is the last one was the scan that showed something in my lung and liver and none of the other scans had anything noted that was not normal.  I do have an appointment with the New Melanoma Clinic in Grand Rapids next Friday and will be taking all scan copies and pathology reports with me for them to review and the people reviewing now are not melanoma specialists.  Until I get results back and everyones opinions I will not know what the immediate future holds yet and it drives me crazy.  I also have an appointment next Wednesday at Dermatoligist office to have that bump on my neck looked at and possibly biopsied.  I will keep updating as I found out more. Praying for NED!!

Don't sweat the small stuff. There are bigger fish to fry!

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jimw's picture
Replies 9
Last reply 1/15/2012 - 8:12pm
Replies by: Gene_S, fdess056, scots, atcchris, jimw, DonnaK, Anonymous

Hi on November 23rd I had a tumor removed from my upper arm and a sentenal lymph node. THe cancer had just barely spread to the node, 1 only and none other detected. THe post op showed all the tumor removed and clear margins. On December 21 they removed the 23 surrounding lymph nodes, and they were all clear. I also had a petscan that was normal. I am graded at a stage IIIb because it touched my lymph node. Had my first visit with the cancer dr two days ago. He has ordered some up dated tests but for now I have two choices,, just go through Observation,,or go onto interferion. The Dr. will just give the facts and with interferon, facts are scatered everywhere. I did a lot of reading on it and there are as many pros as cons, and the side effects are pretty bad it seems.

I'm 63 and in good health, but live alone exept for my dog. I work and don't want to retire yet but the idea of having the flu for a year and then after the treatments being back to square one is perplexing. For now I am leaning to not take the treatment, but my kids, in their young 30's aren't happy about it. I know I have to make my own ecision however any reliable facts out there on interferion? It seems as elusive as is melonoma.

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Gene_S's picture
Replies 3
Last reply 1/13/2012 - 8:30pm

Tomorrow, Gene goes for another maintenance dose of IPI/Yervoy (10mg/kg) with the GM-CSF injections that he does daily for two weeks on and 1 week off and then the 3rd of February will be more scans.

We are hoping that this will put him at NED (no evidence of disease) and he can finally stop the infustions.  The first of March will be one year since he started on this clinical trial.

Judy (loving wife and caregiver of Gene Stage IV)

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

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SStamps's picture
Replies 1
Last reply 1/13/2012 - 8:25pm
Replies by: Theresa123

The tumor on Mickey's spine showed leptomeningeal. Mickey had 7 rounds of radiation on tumor finished on 12-08-11 and ommaya was place on the same day. On 12-14-11 treatment started with IL2 administered thru ommaya 5 days in a row one day off then another dose after this dose he became very confused so they didn't do anymore treatment that week.  He got better and they let us check out for Christmas then back the following Tuesday.  He was able to handle 2 treatments that week and again he was able to check out for New Years.  Checked back in and finished with 3 treatments that week.  Back to hotel and scans this week. Dr Papa said the radiologist e-mailed him about the brain MRI and spine MRI.  Tumor in brain is larger and tumor on spine is smaller from radiation but looks like leptomeningeal  has spread up the spine.  Dr Papa said that this could be inflammation from treatment also every time they tapped him the spinal fluid has been clear of cancer cells but will know more in 4 weeks.  So we made it home last night and next week starts the once a week for 4 weeks then scans and maybe 2 more once a weeks then goes to 2 weeks and so on up every 6 weeks possibly every 8 weeks.  Mickey is doing well other then tired and and not much of an appetite. I have read that AmyB had this same treatment? But I am unable to find any of her post.  I have read her sisters

Hoping you all have a blessed new year

Samantha

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Replies by: Lucassi, Lynn1962, eaca, Tim--MRF

Hello,

I'm newly-diagnosed and new to this site, and would like to ask a few questions of the group! I was diagnosed with acral melanoma stage IIb on my right foot in November. Since then, have had two surgeries - one for the initial excision, and one for the margins that resulted in the amputation of my 4th and 5th toes and part of foot below them. They did a sentinel lobe biopsy at the same time, and one lobe came back positive at the microscopic level - the doc said there were very few cells there, but this bumps up the stage to a IIIa....

So now the plan is to remove the linguinal lymph nodes, and I can follow up with Interferon either the high-level one or the 5-year plan.. My medical doc said he would like me to consider the 5-year treatment, as the latest info shows that my particular type of melanoma had promising results of remission with the 5-year pegylated interferon (Sylatron) treatment.

I'm still trying to decide what to do, and Im confused. All the info out there says Interferon does NOT impact survival rates, but DOES have an impact on remission rates. So what does that mean??? I would assume if it can delay remission, it would improve survival. But mainly, I'm trying to decide if having the reduction in quality of life is really worth it....survival rates after five years for my type/stage of cancer are not in my favor, lol! So do I want to  live my life to the fullest for a shorter time, or feel like crap every day for the next five years and then possible die anyhow? UGH! What a choice!

I am a healthy 49-years-young woman who has no other medical issues and leads an active lifestyle. My daughter and her husband live with me, and I have two wonderful grandchildren and another on the way...I have a lot to live for and have a high pain threshold, so I'm up for the battle. However, I just want to be able to actually enjoy my possibly-limited time with them, and I'm worried that the Interferon treatment would not let me do that.

I would love to get comments from the folks on the board about how they made their treatment decisions! I am very torn at this point! Thanks so much!

Lynn

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