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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JennyBaums's picture
Replies 5
Last reply 2/9/2017 - 11:58am

My Mom initally had malignant melanoma removed by dermatologist (2.86 deep) in September 2016, then had wide resection without sentinel node biopsy. The path report showed no evidence of melanoma in the surrounding tissue. The oncologist suggested a certain type of radiation (IMRT) as treatment however the insurance would not approve it and we have been fighting them for 4 months. it was suggested by her primary physican to get another Oncologist to help fight with the insurance, the 2nd Dr. says radiation should have never been an option and we need to get scans, blood work, and possible lymph node re-section and immunotherapy treatment given the results. I feel like my mom has fallen thru the cracks and has been waiting 4 months with no treatment or testing. At this point we are really not sure which Dr. to believe and need some advice. Also we are in Las Vegas, NV so if anyone has any refrences for good dr.'s or support groups for her I would be forever grateful! 

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Hi, 

Jennybaum has posted below asking for advice AND a specialist recommendation for her mum as treatment so far has not been as would be expected. Has anybody got personal recommendations please ?

Many Thanks

Deb

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 9:49am
Replies by: Fen

I had surgery on Tuesday to remove the melanoma and 2 lymph nodes. The lymph nodes came back benign. 

Thank you for all the support here. I have been reading along, and I am just amazed at how smart and brave you all are. 

I hope this beast never returns to me, but it is so comforting to know this group exists. My step father passed away from melanoma in 2004. I pray for all of you that they find a cure for this type and all cancers, soon.

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Anonymous's picture
Anonymous
Replies 1
Last reply 2/9/2017 - 1:07am
Replies by: Treadlightly

 Long story made short in the early spring of 2015 I noticed a tiny pink/brown, perfectly round mole on my thigh.  several dermatologists told me it was normal. I was 34 when I noticed this mole.   In January of 2016 I asked one of them to remove the mole and they did a shave biopsy.   At this time it was about 3mm-4mm.   I had constantly been poking and prodding at it because it was bothering me since it did not look like any other moles.  It did not grow at all or change colors. 

I had to return and have margins removed.  I forget how much skin they took but I have a nice scar from the removal.  The dermatopathologist told me this was an atypical spitz nevus.  He said that the margins were clear and that the shave biopsy got it all.

I had not thought about the mole until I saw an article about a lady who had much larger mole removed, I believe 9-10 mm,  that was changing.  Her initial diagnosis was an atypical spitz nevus but then a short time later she had a swollen lymph node and it was diagnosed as a spitzoid melanoma by a specialist.  The article explained how sometimes they screw up the diagnosis of an atypical spitz and melanoma. 

I am trying to put my mind at ease somewhat.  I noticed this in the spring of 2015 and it is almost two years later.  If mine was a melanoma would something else have popped up ?  Like a swollen lymph node etc ?  Nothing has changes on my scar and I am perfectly healthy.  

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Marydel's picture
Replies 2
Last reply 2/8/2017 - 11:54pm
Replies by: Marydel, KMick

Has anyone out there had a free flap to cover the skin removed on the top of the foot?

1. Did you have to stay in hospital after?

2. What type of protection did they give your foot?

3. When could you get up and walk?

any other info you could add would be great!

Marydel

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Jenine's picture
Replies 1
Last reply 2/8/2017 - 11:34pm
Replies by: _Paul_

Hello friends,

My husband has been receiving Keytruda every three weeks for 21 weeks with a shot of Peg once a week.  His PET scan last week showed no new tumors and his existing tumors did not grow in size.  Has anyone had an experience with a like treatment?    We were told to give the trial more time.   Any thoughts on response time or effectiveness?

God bless,

Jenine

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laulamb's picture
Replies 10
Last reply 2/8/2017 - 11:13pm

Ok fellow Melanoma Warriors ... I have my 3 month follow up scan tomorrow.  Had CT scan in November when an indeterminate 4 mm left lower lung pulmonary nodule was seen.  Diagnosed Stage 3a April 2016 ~ completed 4 doses of ipi at 3 mg and did 1 maintenance dose (will continue maintenance doses for a year).  Please keep me in your thoughts, send good vibes, prayers, do a dance ~ whatever it takes to make sure this hasn't grown or multiplied!! 

Peace and Good!
Laura

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Nicklindner's picture
Replies 10
Last reply 2/8/2017 - 7:50pm

There have been a quite a few questions related to this combo lately and will probably only continue to be more. I thought it might be helpful for everyone to see what the response rates look like from members on this board. Who has taken this combo?  How many treatments of the 4 did you manage?  12 week scans show stable or tumor shrinkage? Did you need to move onto anything else after just opdivo?  Were you considered a full responder?  

For me personally it is one thing to read clinical studies but another thing entirely to hear personally from the Warriors who have gone through this journey before some of us newbies.   Being 33 diagnosed 2 months ago with stage 4 I can't get enough positive news and hope from this site unfortunately I am sure there will be many others like me, new to this site, that could use that hope too  

Thank you!

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Replies by: Anonymous, JustJaren

Hi All!

RIght now, after the WLE and SLN removal, the SLN came back with '3 to 4' cancer cells in the subcapsular region. Of course, the surgeon now recommends an inguinal lymph node removal. 

1.- I am having a hrd time committing to this surgery, knowing the original lesion was 0.86 with a mitotic rate of 1- I have an 80% chance of no other nodes being involved- should I torture my body and risk major complications for an extended life? (statistics say recurrence within 24 months as opposed to 36 months with the surgery)

2.- If I DO take the surgery- what were your experiences for recovery- specifically returning to a desk jobn, how long before you can drive, etc. 

 

I am overweight and know this increases my chances of complications significantly- BUT I am MOTIVATED during recovery- I had a partial knee replacement last year that I was off th emeds in days and back to work. I relaize this is very different, just lookng for some experiences/article references regarding NOT getting the surgery, patient experiences, etc. 

Much love to everyone!

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Hi all - Came on here last night to post but ended up in a river of tears - for Rita (Charles), for Judy (Vince) and all the newcomers ... so many new cases - it's pretty distressing. I feel for all of you!

For what it's worth, I'm going to update on my sister Leisa.

Brain MRIs and thoracic CTs are running about 6 weeks apart and latest CT report is in. Previous showed major shrinkage everywhere and several organs were already clear. Latest scan reveals more clear organs, now including pancreas and lungs. The lungs are a big one - at height of progression, there were about 8 tumours showing - all that's left now is an area of partial lung collapse.

Liver and spleen are still showing multiples but all have shrunk. Bones are also still showing multiple "sclerotic lesions" but predominantly in the spine (no surprise, it invaded just about all of the vertebrae) - T12 is totally collapsed and T5 is partially collapsed (she lost two inches in height when they went). Report now is not even noting other bones that were compromised (several ribs, right arm just below shoulder and right femur had large masses), so, we're taking no mention of those as good news.

At one point, a tumour in the spleen was so large, they couldn't tell if it was growing from the spleen or the kidney and both kidneys were "lighting up" but they're now referring to these areas as "bilateral renal cysts" ... there has been no change in their size. Considering everything else has shrunk or resolved, I have no problem believing these are cysts :)

And last - no new mets - no progression, only regression.

She's now halfway through a clinical trial of 24 infusions of nivo only and left yesterday for a winter getaway in Puerta Plata - yayy!! That's the first time she's been well enough to travel in two years.

So, we're "quietly" hopeful but always aware of how tenuous a great response can be. I'd love to know that NED is in her future ... but all I do know is that - for all of us, mel patients or not - all we have is today, tomorrow is unknown.

Best wishes and thoughts going out to everyone on here - please, be as well and happy as can be!!

Barb

 

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dori's picture
Replies 5
Last reply 2/8/2017 - 6:25pm

Hi everyone,

My best friend was just diagnosed with melanona. I don't know all the details but she is devasted. She is having an assessment and consultaiton tomorrow with a doctor.

I have offered to help and do research on options for the best treatment, best doctors that specialize in melanoma.

We are from Toronto Canada but want to know about any special clinics in the US as well. I heard the Mayo clinic is great?

I would appreciate any feedback as this would truly help my friend.

 

Thank-you

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Bmine102793's picture
Replies 9
Last reply 2/8/2017 - 6:10pm

Mri on fiance came back clear besides a small calcification on front lobe which could be do to many years of sports but sense he is currently diagnosed 3A till we get petscan results tomorrow they will continue to monitor it. Now the doc said he wants us to go to clevland clinic for better melanoma care and suggested that Yervoy(ipilimumab) while more toxic than other treatments can improve of all survival but 53% of patients who did the treatment dropped out due to toxticity. I would just like some insite on it please

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Shelby - MRF's picture
Replies 6
Last reply 2/8/2017 - 5:46pm
Replies by: Anonymous, Shelby - MRF, jsnew, Ed Williams

Dear MPIP Community:

Cardinal Health is conducting a study in melanoma and they'd like to reach out to you for help. Please see the message below to see if you qualify and learn more about the research study:

 

Do you have Stage II or III melanoma? Was your melanoma surgically removed? Are you currently employed? We want to hear from you!

Cardinal Health is currently conducting a Melanoma Study.  The purpose of the study is to better understand the impact of melanoma on a patient’s work-life balance. They will collect information on how melanoma may affect your ability to work, your use of health care services such as doctor’s offices or the emergency room, and how you may feel on a day-to-day basis.

If you agree to participate, you will complete an online survey about the topics listed above. You will be asked to complete the same survey 5 times (once every 3 months). You will be notified by email 3 months following the prior survey and will have up to 7 days to complete each survey.  Each survey will take approximately 30 minutes to complete. You will receive $50 for each of the surveys you complete and then an additional $50 bonus once you complete the 5th and final survey.  In total, if you complete all 5 surveys you will be compensated $300 for your participation over the course of the project. 

Please click HERE see if you qualify.

 

Thank you for your consideration and Happy Holidays to you and your families,

Shelby - MRF

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Jubes's picture
Replies 11
Last reply 2/8/2017 - 5:19pm

Does anybody else on keytruda have terrible mech back and shoulder muscle pain? Thanks

anne-Louise 

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Daughter of Patient's picture
Replies 4
Last reply 2/8/2017 - 4:28pm
Replies by: jahendry12, KAF, MikeW, Tim--MRF

My mother was just diagnosed with malignant mucosal melanoma of the sinuses last week. She lives in the north suburbs of Chicago. She has an initial appointment with Dr. Jon Richards on Monday. Any recommendations for a doctor to obtain a second opinion in the area? Many thanks in advance.

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