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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Nemesis's picture
Replies 6
Last reply 12/23/2016 - 5:46pm
Replies by: Sophietx, Nemesis, Dreaf01, Anonymous, Kenkussions

Hello everybody,

 

After reading this forum, I thought I'd introduce myself. I was diagnosed with melanoma last week. It is 0.94 mm deep (and not 0.94 cm as I was told over the phone). So stage 1, but barely. According to my doctor, no ulceration and not aggresive (I take that to mean that the mitotic division was low). Going in for SNB next week.

 

I am 34 and got a 6 month old baby at home. Was going to have one more, but it seems that pregnancy may make melanoma come back. Don't know. All is new and scary.

 

Wish me god luck! I am sorry we have connected under such circumstances.

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Everymoment's picture
Replies 2
Last reply 12/23/2016 - 4:30pm

I had vulvar melanoma about seven years ago. I had my labia removed and SNB was clear. The past couple of months I noticed a sore on my labia. I went in today and the doctor said I had a swollen node right next to where my mole was. She biopsied it and called my oncologist. I can't believe this. I'm devastated. The results are coming back next week.

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Nemesis's picture
Replies 2
Last reply 12/23/2016 - 1:17pm
Replies by: Nemesis, Janner

Tumor Site: Back
Primary Tumor:
Histologic Type: Superficial spreading
Tumor Thickness (pT): 0.94 mm
Ulceration: Absent
Macroscopic Tumor: Present
Tumo
r Size: 0.5 cm in largest dimension
Microscopic satellite nodule(s): Not observed
Macroscopic satellite nodule(s): Not applicable
Margins:
Lateral: Uninvolved, nevus extends to a
peripheral margin
Deep: Uninvolved
Regression: Not observed
Associated Melanocytic Nevus: Present
Angiolymphatic Invasion: Not observed
Perineural Invasion: Not observed
Mitotic Index: >/=1 mitoses/mm2
Pathologic Stage (pTNM): pT1b Nx

 

Histologic sections of skin on six H&E slides from two blocks
are reviewed. The specimen shows a compound proliferation of atypical
melanocytes. Junctional melanocytes are epithelioid in appearance
with enlarged nuclei and prominent nucleoli. There is transepidermal
migration of melanocytes. Similar appearing atypical melanocytes are
noted in the dermis at a depth of 0.94mm. Smaller, more bland
appearing melanocytes are present in the dermis and extend more deeply
around dermal vessels and adnexal struc
tures. Mitotic figures are
present in dermal tumor cells at a rate of 1/mm2.

 

I think I undestand most of it. but hat is your opinion?

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rabbits68's picture
Replies 3
Last reply 12/23/2016 - 12:08pm

In September I had to stop MEK due to progression. After severe hip and leg pain, a scan showed a fracture in the top of my femur and I now have a titanium rod to stabilize that leg. I started Keytruda and have had 5 doses. My back and legs hurt so bad most of the time and I'm getting anxious and concerned. Should I be I insisting on a scan or is it too early? I do have spine and pelvic mets that had stabilized on MEK. It was amazing how fast things progressed for me after MEK stopped working. Trying to stay positive and keep my eyes on Jesus.

LisaG

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Aloha14's picture
Replies 2
Last reply 12/23/2016 - 12:12am
Replies by: Aloha14, jennunicorn

I'm back from the surgeon and although she said she would drain the fluid built up after lymph node removal, she changed her mind because she is too worried about infection. 

I don't understand how this works. Is the lymph system a closed system? After removing one isn't the place it was removed from stitched back up so there's no hole left? Is the extra fluid causing the lump supposed to reabsorb or what? Having this lump putting pressure on my muscle/nerves in the area down my lef is more uncomfortable than the large incision on my lower leg. 

 

 

 

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scots's picture
Replies 4
Last reply 12/22/2016 - 9:46pm

I live 2 hrs from University of Virginia Medical Center so I'm going to a local oncologists for treatment but I would like to find a melanoma specialist at UVA Cancer Center.  Doe anyone see a Melanoma specialist at UVA?

 

Thanks,

Scot

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Michelem's picture
Replies 15
Last reply 12/22/2016 - 9:41pm
Replies by: tag4128, POW, Lil0909, Michelem, kylez, Anonymous, BrianP, JerryfromFauq

My husband has just had his second surgery to remove more lymph nodes from the groin area. He had surgery on a melanoma of his foot and cancerous lymph glands removed in October. He was being screened for a randomized interferon/ipi clinical trial, but the PET scan lit up, leading to this new surgery. Surgeon found that the cancer was more extensive in additional nodes and groin area than anticipated.

At this point, I am uncertain if we are still Stage III, or if this is now considered Stage IV.

We are in Sacramento. Our surgical ocologist has now said it's time for us to see a doc in San Francisco. I see that there are several "melanoma clinics" in SF, but are these considered to be "centers of excellence" for melanoma?  We are likely to be referred to a melanoma specialist at California Pacific Medical Center. It is hard for me to tell if this is truly considered a "center of excellence" for melanoma - can anyone please advise?

A complication for us is that these operations have left my husband with severe lymphedema of the leg, so getting on an airplane to get to a more distant clinic would be problematic.

Thanks for your thoughts! 

MicheleM

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Anonymous's picture
Replies 6
Last reply 12/22/2016 - 9:30pm
Replies by: Anonymous, keepthefaith11, Janner

After my appointment last week where I was told that melanoma was highly likely in a mole that I had punch biopsied, the pathology report came back with "junctional melanocytic nevus, dysplastic type with severe atypia". My doctor said this was the best report I could have gotten since clinically, what her and the other doctor were seeing was melanoma. I am having it removed next week where she is going to take wider margins than usual (5-6mm) and then that will be sent to pathology. 

can anyone help me understand what exactly the path report means. Could I still have melanoma? The doctor basically said, it is an atypical mole and cells that are changing and we're lucky to have caught it now. 

Im feeling so relieved but still need some clarity. This has been the worst week of my life thus far waiting for the report since I have a 8 week and 18 month old. Any input would be greatly appreciated.

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Already have systemic disease and am on immunotherapy with Ipi Nivo due to spread to visceral organs- am10 weeks in to therapy and have two new pea size lumps on scar line of previous lymph node dissection in groin. Any one with similar experience ? CT scan due in 4 weeks. Oncologist has examined them. They seem to have got slightly bigger this week.

Could this be a reaction triggered by immunotherapy drugs...or is it more realistic to suspect that they are either new malignant lymph nodes or new sub cutaneous spread . They are not tender or painful. 

Any relevant feedback welcome- good or bad news ...am wondering if they would be likely to do ultrasound aspiration or more surgery if it is  melanoma or  just leave as is and see if ipi nivo does the trick as the melanoma cat is already out of the sack and beyond my lymph system ? 

Thank you for reading.

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Bubbles's picture
Replies 2
Last reply 12/22/2016 - 5:05pm
Replies by: MaPerny, jennunicorn

...so sayeth many melanoma reserachers.  Here is a copy of an interview Weber gave this month that breaks it down.  (Great thanks to Eric and B for their melanoma snooping today.  Lots of slides from a PrimeOnc presentation that presents data on many of the combo's Weber addresses...when I get the chance!!!)

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/12/the-future-for-melanoma-treatment.html

Blessings to you all this holiday season.  We have all borne the scars of melanoma.  However, we will move forward...TOGETHER!!!  love, c

PS...if you're sick of melanoma and just want to eat cake!!!  ~  the post below this one is perfect!!!  :>)

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Aloha14's picture
Replies 2
Last reply 12/22/2016 - 3:14pm
Replies by: cavsnut, Michelle820

My surgeon seems anxious to have me do the ultrasound of my lower leg right away and I don't mind. I guess she just wants to see what it looks like right after surgery to remove the tumor. The lab indicated that all of the melanoma was removed. Anybody else getting ultrasounds after surgery and periodically for a year after? I'm also getting the Pet Scan next week. 

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Bradley75's picture
Replies 10
Last reply 12/22/2016 - 2:35pm

I haven't posted much recently because thisis all moving so fast.  In August, I moved to stage 4 with a small tumor in the fat near my right kidney.  Surgury went better than expected and the tumor was removed.  In late October, I had back pain that I attributed to a pulled muscle.  I went to my primary clinic and they agreed an put me on pills to treat the symptoms.  Well, the pain didn't go away.  It was progressively getting worse and it was time for my next round of PET/CT.

Thursday the 14th, I had my scan at 9am.  By 2pm, we were discussing the tumor pushing on my spine around T-5.  It is about a 3 cm tumor growing in and around my 5th rib on my right side.  The scan also showed another small spot on t-1, minimum of 6 lung mets, and two soft tissue spots near my thyroid.  That whole thing sent into motion a whirlwhind of activivty.  Spine MRI, radiation evaluation, and radiation simulation all done Friday the 15th.  They hit me with my only scheduled radiation treatment on Monday to knock the tumor back off my spine.  I went from what I thought was NED to a whole different world. 

I met with my onc yesterday to discuss immune therapy.  I have read so much about all the various things posted here, but it takes on a whole different meaning when faced with it.  The recommendation I received yesterday was IPI and NIVO combo.  I think he called it Yervoy and Opdivo combined treatment.  It seems like my best option based on all the research he showed me, but I am scared.  This is kind of a big decision and I need to make sure I am comfortable with what I decide.

I wish I could post positivity on here today based on what Josh and others have posted.  The best news I can give is that I pray for everyone on this board and those dealing with this disease every day.  I appreciate any insight or thoughts anyone would be willing to share.

Brad 

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Marina_fonseca's picture
Replies 1
Last reply 12/22/2016 - 2:30pm
Replies by: Tim--MRF

Hey everyone! I am new to the forum and have just gotten the results of a biopsy I had 2 weeks ago. 

It says my mole is 1.2cm X 0.9cm X 0.7cm and has an irregular epidermal surface.

It also says in the microscopic analysis that:

- histological cuts show fragments of skin with proliferation of fusiform or dendritic cells, intensely pigmented. Distributed in dense collagen.

- and that the borders are clean.

 

the final diagnosis presented (in the biopsy) is a blue neavus.

I sent my dermatologist the results and she said that they're normal and I shouldn't worry. I'm scared because the results seem so scientific and weird and I don't know how to interpret them.

Has anyone else had any results similar to this?

Also, the pathology report was really short. It had 3 lines written and it didn't have any of the markers tested and any other information. I thought that was a bit odd.

Anyways, 

Should I get a second opinion on the results? I have a family history of skin cancer (mostly melanoma) and I know it's not something to play with.

thanks for your time :). 

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_Paul_'s picture
Replies 35
Last reply 12/22/2016 - 2:22pm

I just got another set of scan results today. In a period of 37 days it really picked up the pace. So much so that the radiologist's first comment was "dramatic interval progression in metastatic disease burden". I could list all the organs, lymph nodes, etc., but you get the idea.

The MRI revealed my first brain met, a small 4 x 3 mm lesion in the right caudate head.

The TIL protocol allows for me to continue since the met is under 1cm. The oncologist thinks the risk of zapping it and waiting for a few weeks to see if it bleeds is greater than the risk of prolonging the TIL. However, even though it is now widespread, and even though I have a golf ball size tumor in my right lower lobe, my heart is still strong and my lung function remains at 100%. So I am healthy enough for the TIL. Porobably not the case in a couple of weeks.

Unchecked I have about a month or two left. So if the TIL doesn't work I don't think there will be time for another trial. I have new respect for the term "do or die"!

On the good side, my youngest daughter has volunteered to be a 24x7 caregiver which is required during the week of chemo. And my sisters are flying in from afar (Toronto and San Fran) to help after I am discharged from the ICU. And a lot of friends are volunteering to help with whatever I need, including giving my daughter a break from the caregiving. All that love really helps.

Even though I have my will in order, treatment plan in order, caregivers, etc. it feels like I'm an actor in a movie. I am hoping I come out of this alive, but it is all quite bizarre.

I really hope Josh's new combo treatment works. I pray for everyone suffering (physically or mentally) on this board every day.

- Paul

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Anonymous's picture
Replies 6
Last reply 12/22/2016 - 2:21pm
Replies by: Anonymous, Aubreesmommy41, Nemesis

I went in to have a spot on my neck looked at and the doctor(s) said they saw a blue halo, did a punch biopsy and said it's highly likely that it's melanoma. Combine that with me having an 8 week old and recently pregnant, I'm scared out of my mind from the correlation some people put with pregnancy and melanoma and how it makes it spread faster.

 

any input would be so appreciated. Everything I'm reading is setting me up to believe that this could be very very bad. 

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