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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gopher38's picture
Replies 22
Last reply 4/3/2018 - 7:45pm
Replies by: Edwin, bjeans, gopher38, jennunicorn, BillB, tedtell1, Bubbles, Anonymous

After I had my WLE/lymph node removal in February, the dermatologist scheduled me for a PET scan, which thankfully came back clean.  Seemed like a pretty logical next step, to see if the cancer had spread to other organs.  Well yesterday I got a bill from the radiology company, and the insurer (BCBS) hadn’t picked up any of it (>$6K).  I call the radiology company, thinking that they’d forgotten to submit the insurance claim, but they said, no, they’d submitted it, but it had been rejected.  So I called BCBS, and they said that, indeed, it had been rejected as an “Experimental/Investigational” procedure and I was responsible for the whole thing.  I asked which category they put it in, because I didn’t think there’s anything experimental about PET scans, and yes, it’s investigational in some sense, because they’re trying to see if I have mets on my lungs or elsewhere, but I thought that that was normal procedure after finding cancer in the lymph nodes.  The guy on the phone was saying it was experimental, experimental, then investigational, and then finally said he wasn’t sure, but that it’s outside their coverage.  After a bit more discussion, he said that I could file an appeal, and told me that I had to get my medical records and some other info and then I could try to appeal their decision.

I guess I could understand an insurance company refusing a PET scan as “unnecessary” if you tried to get one every month or something, but has anyone every had a PET scan refused as “experimental/investigational” for the first one after a melanoma diagnosis?  I mean, I didn’t sign myself up for the PET scan.  The dermatologist just told me after the operation, “You’ve got melanoma in the lymph nodes; you’ve got to go here for a PET scan”, so I went.  Seems bizarre to me on the part of BCBS.

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Hi everyone,

My father was diagnosed at the beginning of March with stage four melanoma with brain metastases. It's been a heartbreaking month, as you can imagine. He was admitted to the hospital pretty much the moment he was diagnosed, due to brain swelling and the need for immediate radiation treatment. He's also begun the targeted therapy treatment since he is BRAF positive.

Now that he has been there for nearly a month, the hospital is looking to discharge him. He is stll incredibly weak, dealing with expressive aphasia (meaning he can't speak or communicate what he needs), can't get up to use the restroom, etc. Basically, he's bedridden with very few options to let people know what he needs. 

My family has been looking into our options--namely, nursing homes and home care. Home care seems nearly impossible at the moment with the level of care and attention he requires. In all my research, it seems that the nursing facilities in commuting distance for my mom don't have much information on how they help cancer patients. It has also been extremely challenging to find a nursing home willing to administer the targeted therapy medication my dad needs (they are taken orally, but due to his difficulty swallowing, they have been putting them through a feeding tube). 

So...any insight? Has anyone else had difficulty finding a nursing facility that is prepared to deal with the extent of care and the kind of treatment melanoma patients require? We are in the Southern California area and welcome any suggestions!

Thanks so much.

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Bbombers2's picture
Replies 9
Last reply 4/3/2018 - 5:43pm
Replies by: jrtufo, Bbombers2, Bubbles, tedtell1, Anonymous

My father in law has stage 4 melanoma. After numerous surgeries and clinical trials (targeted therapies and ipilumumab) over the past 2.5 years - he is being sent home tomorrow to NJ for hospice. The doctors at Sloan, UPenn, and Yale have told him there is nothing else they can do for him. His liver is too weak for anymore trials and the cancer is throughout his body. Should we just let him be comfortable at home his last weeks-months? Or does anyone believe he can still be treated? Please let me know.

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mrsaxde's picture
Replies 15
Last reply 4/3/2018 - 8:15am

Somewhere upwards of 20 doctors just left the room, including the incredible Dr. Rosenberg. Dr. Yang, my attending, went over the process and what to expect from the cell transfer and the IL-2. This is it!!

The nurse last week suggested that I might want to put together a playlist to play as the cells infuse. So this is what I put together on Spotify (I just realized I should have included Marvin Gaye's "Let's Get It On."):

1. "Ride Of the Valkyrie," from "The Ring" -- Richard Wagner

2. "Wrecking Ball" -- Bruce Springsteen

3. "Rise" -- David Guetta featuring Skylar Grey

4. "Standing On the Verge Of Getting It On" -- Funkadelic

5. "It's Time" -- Imagine Dragons

6. "I Saved the World Today" -- Eurhythmics

I hope all my Christian friends have had a blessed Easter season, and my Jewish friends are enjoying their Passover celebrations. Happy Ishtar to those who celebrate that, and to those who follow faiths without a holiday this past weekend, or those who do not practice any particular faith, I hope your weekend was as wonderful as mine. This board has been a constant source of strength, information, and inspiration over the past few years.

Today is the first day of the rest of my life!

-Bill

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IT Nivo combined with IV Nivo at MDA

https://clinicaltrials.gov/ct2/show/NCT03025256?cond=leptomeningeal&rank=6

Maybe I know more than I don't know.

If I were 35 years younger and knew what I do now maybe an education in the medical field would have been my choice.

 

Again my broken record reccomendation is get to MDA.

Rob

Adriana

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Anonymous's picture
Replies 11
Last reply 4/3/2018 - 1:36am
Replies by: Shann, Janner

Hi

I have recently been diagnosed with in situ melanoma.  Would like some help with my pathology please.  I have had a WLE.  It says the following:

Excision Margins 3mm from 12 oclock 3.2 from 6 oclock.  

Ulceration - Absent

Pigmentation - present

Mitotic n/a

Lymp invasion n/a

Distribution Focal

Density Sparse

Regression - Not identified

Assoc benign naevus

growth - nested, lentiginous and pagetoid

subtype superficial spreading

Excision of scar appears complete.

Sections show skin excision with biopsy site changes.  There is residual atypical melanocytic proliferation along the dermoepidermal junction exhibiting nested, lentiginous and focally pagetoid growth pattersn and comprising highly atypical melanocytes with focal pigmentation.  No invasion is identified.  The features are those of insitu malignancy melanoma of superfical spreading subtype.  No evidence ulceration.

My questions are the surgeon was taking 5mm but in the end it was 3.00 than 3.2 which he said was due to shrinkage.  Is this common?  And he said all margins clear all good and I would not need anymore taken.  He also said the border was mostly a-typical cells?  The lesion was taken from the side of my face in front of my ear. Thanks 

 


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llchelseall's picture
Replies 10
Last reply 4/2/2018 - 8:05pm

My brother Jered is a Stage lV Melanoma patient in ICU sedated, with a trach on a vent. Because he is BRAF positive he is eligible to take Vemurafenib, which cannot be crushed and is acid dissolving/activated. His oncologist has not received any confirmation that this treatment can be administered successfully without being swallowed. Any ideas or insights on a patient taking a pill like this any other way than swallowing and it be effective?

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dbJoe's picture
Replies 6
Last reply 4/2/2018 - 6:55pm

Hey folks.

First off, let me say this board is tremendous. My doctors (not my surgeon), my wife, and friends seem to think I am knowledgeable regarding my disease, but the regulars here make me feel as if I'm in high school. Back when those in high school didn't have all the answers.

My older brother was diagnosed 2010 MUP. Mets to lung and gut. He was unable to tolerate Ipi after his second(!) HD IL-2, and sadly passed in 2013. In my ignorance I didn't pay enough attention.

I was diagnosed in January 2015, MUP. Mets in left supraclavicular and axillary nodes, which were removed in February. BRAF-. April through June I did Ipi, 4 infusions 3mg/kg every 3 weeks. Moderate AE's, mainly elevated ALT and rash. No tumor burden to observe.

All subsequent scans have been negative (positive for me!) except for one or two sub-centimeter pulmonary nodules that were of the 'now you see um, now you don't' variety. Hunky dory, right?

Now I read that OS and PFS stats are twice as high for those that caught the next train (PD-1, my plan 'B') ahead of Ipi. I've also learned I'm approaching the 3-year 'end of the tail' for ORR. I believe I am more anxious at this stage than I've been at any other. I know I should be shouting out I'm 'cancer free', but between you and me, I no longer make purchases based on length of warranty.

So, is there anybody out there with these circumstances? I got 3, Naturally I'm looking for a pen pal going on 20..

Thanx for being here, everyone.

Joe

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swillson's picture
Replies 1
Last reply 4/2/2018 - 6:06pm
Replies by: Janner

Hi All!

New here. Was wondering if anyone has had complications after surgery? I had melanoma on righ shin very near my knee. I have about a 4 inch long incision. Since surgery over a year ago I have knee pain, muscle tightness behind the knee and in hamstring. Also stinging pain at the bottom of the scar. Maybe nerve issues? Still have some numbness nearby the site. Had the surgeon and and orthapedist look at it last year and they all said it was fine. I'm very upset because prior to surgery I had no issues with my knee or leg. Now I can no longer run, do knee bends, lunges or much of anything. The leg is also slightly tight and swollen most of the time.  I had mohs surgery. Any feedback is welcome! Thank you!

 

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Replies by: BillB, Maureen038, Bubbles, Linny

Hi,

  I’m writing for a friend whose wife has Braf positive 600 melanoma. She sees a melanoma specialist at Georgetown Hospital in DC. They’re not sure where it started, but when it was discovered it was in her lung, liver and left hip bone. She was put on the drug regime of Tafinlar and Mekinist and in six months there was 90 percent reduction of nodules. After getting a brain met, Sue was put in the Ipi/ Nivo trial and just had a scan after the second dose of  Ipi. The scan revealed three more brain mets and the other brain met growing and a spot on the Meninges. The specialist recommended she see a radiation oncologist. I’m trying to suggest a second opinion at Sloan Kettering or Yale. Does anyone have any other advice? Thanks so much!

Maureen

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Tjvcc's picture
Replies 3
Last reply 4/2/2018 - 9:49am

On my 3rd treatment of Opdivo. After 5 days developed mild headache on right temple. Not crazy pain just dull pressure annoying, all day. It’s been 3-4 weeks of it. I’ve had an MRI and Blood test for headache drug related symptoms all negative. Anyone else have this or know what it could be? They said I have fluid in my sinus took antibiotics didn’t help. 

 

Thanks 3B diagnosed In Oct 2017

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Hey all - 

Just wanted to do an update and ask for advice. My mom did her 3rd round of the combo infusion March 12th. She was battling low sodium so it took a couple weeks to get that treatment. After she started having migraines. We had an MRI yesterday that showed she had some brain tumors that we haven't had before. They seemed to pop up pretty quick, her MRI at the end of December was completely clear. Is this a response to the combo treatment or is this just a progression of the cancer? They are switching up medications but I haven't actually spoke with the Dr. yet. 

Any positive stories or advice? She went back on the steriods and it seemed to lessen the pain today. We thought maybe the migraines were just a side effect of all the medication combos and the prednisone was helping those but now she is scared and losing hope. 

Thank you,

Aubrey

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SRVilly's picture
Replies 2
Last reply 4/2/2018 - 6:25am
Replies by: dessie, Bubbles

Hello everyone!

I first want to say "Thank you!" to everyone who replied to my first post in December. The encouragement and stories really helped! I'm not much of a "poster" but check out the site every other day or so.  My onc is always amazed at the facts and information I come in with at my appts.  It's thanks to all of you. 

Just to recap:

DX in May 2016 with stage 1b to lower right leg

Found enlarged lymph node in groin, positve for melanoma, and had CLND in July 2017...stage 3

Routine 6 month CT found enlarged external iliac node, positive for melanoma, ordered PET and found 10 small mets in liver, and uptick of activity near my CLND site...stage 4

Started Opdivo only due to history of colitis on Jan. 3rd. Have had 7 infusions with only slight nausea

Now for the good news.  Had my first PET this week since stage 4 dx, and met with Onc the same day to go over results. She hadn't looked at them yet when we met, so I was pretty nervous. She could tell and just told me these are the first scans and the only "bad" results would be if there are any new mets that had popped up in kidney, lungs, or any other organs.  She said she would be happy with no change, or even if things only grew by a little. She opened the report, and her first words were, "Oh my!" The first line of the report was "Overall treatment response". She then went line by line. The lymph node went from 3.2x2.2 to 2.1x1.6 with the SUV going from 15.2 to 2.1! The site near my CLND SUV went from 5.5 to 2.1! Now for the liver: "Interval resolution of prior hypermetabolic lesions from last PET".  I asked her what that meant and she said the radiologist could find no mets at all in the liver!! She did a side by side comparison from Dec. with the current PET, and went slide by slide through both and I could see the little glowing spots in Dec. and NOTHING in the liver this time.  We were ecstatic!! She said this was by far the best results we could have hoped for. 

I am continuing my Opdivo every two weeks and will have another PET or CT in 3 months. I know this is just step 1 in a long journey, but I had to post and let others know there is good news and reasons to be hopeful with these new therapies. 

Thank you all for your input, stories, and knowlegde of this subject.  It has helped me more than you all wil ever know.  I wish you all success with this fight and continued hope for the future.

Steve

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Replies by: Janner, aliw121212

I had two moles removed last November.  The doctor first looked at them and didn't even think they were moles.  They were on my back in a place I couldn't see then (in bra strap area) but because I said my husband noticed them and thought they were new she removed them (saying I really don't expect them to be anything).  So I was surprised when I got a call back saying one was precancerous and needed to go back for a further shave as she hadn't got it all the first time. I asked what time it would have been had it progressed and she said melanoma.

My first question is - four months on the scar is itching terribly and appears raised all the time.  Is this normal?

Secondly my GP who is always a bit of a skeptic said well what is precancerous anyway, it is only cell changes it wasn't cancer.  So now I am confused and wondered if anyone could read what I see on the pathology report and let me know if it was a serious one (I see nothing that grades it) if I am at risk going forward and need to take extra precautions (I live in the south east where we have long got summers) or whether I should continue as normal.  Also does the very last statement mean there was something wrong with mole B too?  The doctor didn't give me much confidence because when I went back she numbed me up and got the scalpel out and then asked me "which one was it?".  I thought your the doctor lady - I hope you know what you are doing!

A - dysplastic melanocytic nevus, junctional type

B - seborrheic keratosis, pigmented

Comment:

A - a lateral edge is positive for neoplasm.  Conservative excision is suggested in order to perform additional histologic analysis and to ensure this proliferation has been removed from the patient.

Clinical History - 2 dark moles R/O atypia

Gross Description

A - received in formalin is a shave biopsy of skin measuring 0.5 x 0.4 bisected and entirely submitted

B - received in formalin is a shave biopsy of skin measuing 0.6 x 0.6, bisected and entirely submitted

Microscopic description:

A - a junctional type melanocytic nevus is present demonstrating architectural disorder and some cytologic atypia

Based on initial morphologic findings and clinical history, stains were evaluated in order to establish teh diagnosis

MART - 1: positive in lesional cells

B - there is a basal and squamous proliferation within the epidermis with deposits of melanin associated with the basal areas. 

 

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calm227's picture
Replies 6
Last reply 4/1/2018 - 12:35pm

Hi everyone,

I'm new to this community but not very new to melanoma.  I had a Stage 1 melanoma in my left calf that was removed via wide excision surgery in early 2010; nothing was done to my lymph nodes.  I have had regular derm. checkups (twice yearly, then yearly) since, and nothing has shown up.

After having acute gallstone pancreatitis in 2014, my alkaline phosphatase was not quite normal over time, so eventually, in 2017, my primary care physician decided to do bloodwork beyond the stardard "metabolic panel" for my liver:  GGT and LDH.  GGT was normal (which ruled out a liver problem), but LDH was just above the range.

I thought the high LDH was odd, so I asked to recheck it at my annual visit, and it had increased.

Altogether, I have had it checked 4 times  (plus the one time it was checked in 2010 in conjunction with the melanoma surgery when it was normal).  The normal range is 116-250, and my scores are:

5-11-17: 251

10-19-17: 275

1-31-18: 326

3-27-18: 300

My primary care physician sent me to an endocrinologist to rule out hyper parathyroidism, and in the process, we figured out that the high alk phos was likely due to osteopenia and low vitamin D.

But I was left with these high LDH scores.  After the 3rd LDH test, having read about the connection between LDH and melanoma, I asked my primary care physician if she would refer me to an oncologist.  Instead, an oncology team reviewed my case and recommended I get a PET/CT Scan, which my insurance approved and I'll be getting on April 3.

Obviously, they are taking this seriously.  My questions are:

1.  Is there anyone who gets these somewhat high LDH readings, and what have they indicated?

2.  Is there anyone who had stage 1, been told all is fine, and then had it reemerge or spread internally years later?

I'm not even sure what else to ask.....    I figure that since the oncology team requested it and insurance approved it, it must be serious.... I have just been trying to stay calm about it!  Thank you.

 

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