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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BetsyM1214's picture
Replies 5
Last reply 4/30/2017 - 10:52am
Replies by: Anonymous, Jamie1960, MichelleRHG, jennunicorn

I just got back from MDA for a 2nd opinion and have scheduled a WLE & SLN with them on Monday. The surgical oncologist confirmed that I am a 1A BUT offered a SLN. This confused me and I did walk out of there feeling like I did not get an answer as to why I was offered the SLN. I did accept the offer but was hoping for any info from other 1A's that were offered an SLN?

1st Pathology: .6mm, Clark 2, no mitosis, no regression, no ulceration, 'lesion extends focally to lateral margins & base of biopsy'

2nd Pathology: only differences are .5mm, Clarks 'early 4, only 1 involved peripheral margin. Deep margin clear. 

So.... in trying to understand why I was offered the SLN,  I asked if it would be covered by insurance since I'm 1A? Dr said she would emphasize the sentence of the 1st pathology report where it notes the lesion extends to the base of the biopsy.

I do want the SLN because for me it will hopefully be piece of mind if clear ( I understand never any guarantees). But I just got these results yesterday, booked last minute flights & hotel for WLE & SLN tomorrow and am now concerned that 1. my insurance won't cover it, 2. the doctor wasn't being fourthcoming with my prognosis when she said '99% certain this will not recur' or my staging at 1A. Lastly, I'm a 34yo Female and was diagnosed shortly after my 2nd baby was born.  Thanks all!

 

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baesill's picture
Replies 9
Last reply 4/30/2017 - 8:08am
Replies by: Nicky, Mark_DC, MikeW, Mat, Polymath, Bubbles, Ed Williams, Anonymous, miaka618

At every turn in my diagnosis for stage 4 all the doctors seem overly optimistic. After every scan and biopsy it's  just more bad news. Looking at my first X-ray that sounded the alarm bells it seemed clearly horrible. 9 days into ipi plus nivo I feel like the first dose isn't going to do the trick, I know I have 3 more, but I just don't see how this can turn around. I feel destined for all bad news all the time and that I'm not going to be lucky like jimmy carter or whoever. I don't know what I'm asking. I'm just sad and wondering if anyone feels or felt how I do now.

 

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cmbstarr's picture
Replies 8
Last reply 4/30/2017 - 7:52am

Hi everyone. Just wanted to share my story so far with melanoma. I noticed a spot on my shoulder in about 2005. After mentioning it many times to my dr. And being told it was nothing it started changing more rapidly in 2013. At which point Dr still said it was nothing and saw no point to refer me to dermatologist. By 2014 I had met my out of pocket max for insurance and although my dr. Said the spot was still nothing she agreed to refer me to dermatologist (even though he will not understand why she sent me). As soon as dermatologist walked in he said it looked like melanoma and called in his colleague to confirm. They immediately did a punch biopsy with a most likely I would be back diagnosis. Sure enough in a few days I was called back in to talk with them. It was melanoma and a removal was scheduled. Resulting in a 5 inch scar down my shoulder. I was told it was just under the cut off depth for lymph node testing and proceeded with routine skin checks as only follow up. In January 2017 my armpit near the original site started to fill strange. By February I noticed a hard lymph node and went to my dr. (I had changed primary dr.s at this point) he said we could just wait and see but when I mentioned the melanoma I had previously had (he had forgotten?) He said we could still wait or do a surgical biopsy. I chose biopsy. It came back positive for melanoma. Now I have stage 3 and an oncologist. I meet with a different dr. On Monday to schedule a complete right axillary lymph node removal then either immunotherapy or a clinical trial. Haven't decided which yet. So I'm finding out how much I have to be my own advocate. I know the dr.s I have had are good and defiantly mean well but if I hadn't continued to push I hate to think of where I would have been at this point.

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/30/2017 - 3:54am
Replies by: sgreenberg, Janner

Hi,

My dad was diagnosed in July 2016 - in U.K. with fast growing nodular melanoma on forearm. He had WLE and Sentinel node biopsy which was negative. Also clear CT scans. He was given no breslow thickness/clarks level/miotic rate or even staging. I worked out for myself it was serious. The nodule was so large that he had 8x8cm WLE. Sent home "all clear".

Right enough 9 months later large lump under arm. Confirmed recurrent melanoma in the 2 biopsied nodes. By the time he got to surgery all nodes matted together and stuck to sweat glands and artery which was accidentally nicked in surgery and caused huge haematoma. Again CT scan clear. Again no staging.

I am pulling my hair out with worry knowing this will prob come back again quickly. But dad offered no options for treatment. He has never spoken to oncologist only a plastic surgeon. Is that normal?

Thanks for any replies.

 

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/30/2017 - 2:06am
Replies by: sgreenberg

Feeling really nervous. Everything seemed pretty well under control when I was on the Taf/Mek combo since it shrunk my tumor considerably but my SLNB turned up on lymph node where a bit of tumor was growing and bits of it where found in the fat surrounding it. I had to have another round of radiation for that reason. I'm going through the usual paranoia of fearing any odd pain that I feel, is related and that my results are going to come back bad. How do you cope with this? 

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yoyopt's picture
Replies 3
Last reply 4/29/2017 - 11:43pm

I'm currently waiting to heal from my 1st surgery in order to get my 2nd surgery (Complete Lymph Node Excision) at that point my stage will be updated and I will meet with my oncologist to plan immunotherapy treatment.

Right now I feel ok. My doctor does not want me to return to work during my treatment- 6 months to a year- I am a Physical Therapist, so my job involves a lot of activity and heavy lifting. Not working is so strange for me, especially when I dont feel sick...My doctor says the treatment can be hard hitting...its also weird to have so much wait time before I start treatment that will make me sick.

I'm 40yrs old. I am a single mom with a 1 year old daughter. I love boxing, and spinning, and yoga. I love sunshine and water and being outside. 

I have no idea how to feel right now, or what to expect for this next year of treatment. If anyone can help with their experience please let me know.

 

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AB's picture
Replies 15
Last reply 4/29/2017 - 10:54pm

Anyone feel their doctor is interested in them versus just what they can write about the success and or failure they have had with Patient X? I need a doctor that will give me an idea of my real options, side effects and estimated timeline for the mets to spread to my brain, chest, abdomen & pelvis. Thanks again

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Jdc's picture
Replies 6
Last reply 4/29/2017 - 10:41pm

Hello all, just found out this past Tuesday that my original melanoma on face has spread to left lung just over 3 x 3 cm, scared to death! PET scheduled for next Wednesday. My fear is I just started a buisness and I do not have insurance and have no idea what direction to go. My wife is a mess, any suggestions is much appreciated

Joe

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My mom presented to the ER on January 17th of this year with right sided weakness and a bit of confusion. They did a head scan and saw what they thought was a brain bleed. Rushed her by ambulance from our small hospital to the larger one in St. Louis (about an hour away). They did a comparitave CT and decided it had not grown. Surgery not recommended, admitted for monitoring and further tests. They did an MRI with the following results:

"There is a left superior frontal gyrus focal hematoma present. This measures about 1.5 x 1.5 cm in size. This has an hematocrit within it. Within the hemorrhage there is a focus of enhancement centrally suggested on coronal images. There is also noted to be a focal area of enhancement within the left lentiform nucleus. This is T2 bright. There is no surrounding edema. There is an additional enhancing lesion noted measuring 8 mm in the left inferior frontal gyrus."

Neurosurgeon graced us with her presence for all of 3 minutes to inform us that they were all in places too risky to even biopsy and they're probably cancer so 'expect a swarm of oncologists' to look for the primary. The swarm didn't come. We knew Mercy was NOT the hospital for us and we got them to release her Jan. 19th.

Her primary care from when I was a child had advanced in his career to internal medicine at the best hospital in the state. Also about an hour away from us. We went to see him, and I'll cut down all the goose chases he had us go on. PET scan showed one lung lymph node lit up a little. Biopsy, negative. One small spot on 'terminal ileum' in bowels, likely will have colonoscopy and investigate that bugger later.

MRI on March 7th:

"There are multiple lesions within the brain. There is a 1.6 x 1.4 cm enhancing T2 hyperintense T1 isointense lesion in the left frontal lobe (series 20 image 18). 6 mm T1 hyperintense enhancing lesion in the posterior left putamen (series 4 and 20 image 17). 1.3 x 1.1 cm heterogeneously T1 hyperintense enhancing lesion in the left frontal lobe (series 4 and 20 image 8) in the pre- central gyrus. No additional lesions identified."

So there we see that the 8mm frontal has now gone to 1.6 x 1.4 cm. The initial one went from 1.5 x 1.5 to 1.3 x 1.1 (margin of error perhaps) and the one deep in the putamen has finally been defined and it's 6mm. 

I finally tell my mom I think we need to give up the chase and do the brain biopsy. She agrees, and we find a neurosurgeon. He requests a 3T MRI. 

MRI on April 13th:

"The 3 previously seen rim enhancing lesions in the left frontal lobe, parietal lobe, and putamen have increased in size. For reference, the largest lesion in the frontal lobe previously measured 1.6 cm and now measures 2.8 cm. In addition, a new small frontal enhancing lesion is identified"

So that one frontal lesion started at 8mm January 17th and was at 2.8 cm April 13th. 

The neurosurgeon said he thought it best to skip right over the biopsy and go straight to crani for debulking. He said if he could get it all safely that he would, but that going in the intents were to debulk and provide tissue for pathology.

Frontotemporal crani went better than I could have ever hoped. The first neurosurgeon said she couldn't even biopsy. He excised the whole damn thing. She was in and out of the hospital in 54 hours. 

But now we have that new little bugger that popped up right by it. Pathology was available on my app (I know, helicopter daughter) on the 22nd. The meat of it reads as follows:

"Hematoxylin and eosin stained sections of the left frontal brain tumor (specimens A and B) show multiple fragments of a neoplasm and lesser amounts of brain parenchyma, joined by a broad, non-infiltrative interface. Arranged in sheets and perivascular pseudopapillae (formed by perivascular sparing in areas of necrosis), the tumor cells have variable amounts of brown cytoplasmic pigment and predominantly epithelioid/rhabdoid morphology, with variable amounts of eosinophilic cytoplasm, one or two atypical oval/reniform nuclei, and prominent nucleoli. Rare cells appear spindled. Mitotic figures, often atypical, are common. Immunohistochemical stains (single antibody procedures, B1) show the tumor cells to be diffusely and strongly positive for S100, Melan-A and HMB45. Reactivity for mutant BRAF protein (p.V600E) is equivocal; tumor cells show a faint blush which may simply reflect high background staining. 'Molecular' testing may be required to provide a more definitive determination of BRAF mutation status, if clinically indicated. These histomorphological and immunohistochemical findings support the diagnosis: Metastatic melanoma."

IF CLINICALLY INDICATED? Yes. Clinically indicated. Very much so.

I called the neurosurgeon's nurse and told her that I wanted an order put in for genetic testing for the BRAF mutation. She seemed a bit confused but assured me she'd figure it out. 

I also called Siteman (cancer center located within the massive hospital complex, the best place around) and will be getting a return call Monday or Tuesday to set up an appointment with Dr. Kaufman, the melanoma specialist I picked (we have four of them somehow). 

I feel like I'm sitting at a chess board playing the most important game of my life.

Do we go for immunotherapy? Gamma knife? Both? I have a strong feeling that chemo and WBR are useless and probably dangerous considering her age and lack of tumor burden/disease presence systemically. 

Also, there is a neurosurgeon that is a colleague of the one who performed her crani that does LITT. Apparently that's not widely available, much like the stealth guided technology they were equipped with to assist with the crani. So I'm thinking that the LITT laser ablation may be an option.

Do we tinker with gamma knife, risk more bleeding, wait to see if they shrink disappear or recur... Do we go for immunotherapy and hope that there's a clinical trial that would accept her or hope that insurance would cover the 150 THOUSAND dollars that it costs? 

Or do we go straight for the LITT?

I know we'll get more answers when we get in with the melanoma specialist but I'm trying to keep us one step ahead of everything and from what I've read on this board the experiences and input of others can be absolutely invaluable. I'm not really asking any direct questions here, mostly posed some hypotheticals... But ANY and ALL input is not only welcome but incredibly appreciated. I know there are several people here who have survived quite well with brain mets and that gives me hope.

Sorry for the lengthy post, guess it's a lot to get out there all at once. I handle all of this for my mom to relieve the burden on her. She trusts me implicitly and has told me her limits. I'm doing my best. I hope it's enough. She's my best friend and I'm quite honestly terrified by the erratic behavior of this sudden whirlwind that's been thrust upon us. 

So, hello to everyone, and thank you for reading :)

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casagrayson's picture
Replies 11
Last reply 4/29/2017 - 12:46pm

To only do punch biopsies?  My husband has had two primaries, both of which were biopsied with shave biopsies.  He's had dozens of biopsies since, and the derm *always* shaves.  I even asked last month, when they were removing a really ugly lesion (which turned out to be squamous) if he would do a punch, and the med assistant said that he wouldn't.  We have another appointment tomorrow for another bad spot on his skull, and I *really* want to move to punch biopsies.  Any suggestions for how to approach this?  (He's a really great doctor, very caring, but just very busy and I think shaving these things takes less time.)

 

Strength and Courage,

Susan

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Lddaughter's picture
Replies 6
Last reply 4/29/2017 - 10:42am

So my mom  got back that we are BRAF positive and we have a few more scans for her eyes, pelvis and heart. They want to start her on a S1320 trial. Honestly googling it I have a hard time interperating the results, facts and informations posted online. So I decided to stop. Has anyone heard of these? Is the BRAF Positive indicatior a good thing?

We had a great first meeting with the specialists where they want to work on pain management and then start treatments. The tests are to make sure she qualifies for this trial. I will tell you, a good specialist seem to make a world of difference. 

Any input would be fantastic. We still have so many questions but we know that is going to be the case for a good while. 

Thank you!

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zfishberg's picture
Replies 3
Last reply 4/29/2017 - 9:44am
Replies by: zfishberg, Bubbles

Hello!

i wanted to check whether anybody tried the combo treatment after several Keytruda infusions.

My husband had 3 infusions and 2 Gamma Knife treatments.

His last Two MRI tests showed progression - significant enlargement of majority of existing lesions and multiple new lesions.

The conclusion was that Keytruda is not working and the plan is to start on the combo following Opdivo as a single agent.

Are there any concerns  regarding efficacy of the combo after Keytruda?

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Anonymous's picture
Anonymous
Replies 9
Last reply 4/29/2017 - 3:31am
Replies by: Aloha14, Christinad, Anonymous, jennunicorn, SABKLYN

Hi All,

 

My dad was just recently diagnost with melanoma . He is going to see an oncologist this friday, but I was reading on the comments and suggestions that its a good idea to be seen by a melanoma specialist. Does anyone know of one in the Sacramento area?

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/28/2017 - 4:23pm
Replies by: jennunicorn

http://imgur.com/R9CGUVg

So I've had this mole for the longest. There hasn't been any pain, tenderness, bleeding, or scabbing (the common symptoms of a melanoma). I've known it's been there for the longest and maybe even since I was little. I just want some input of whether it's likely to be one. I haven't really noticed any changes since I haven't actually put any attention to it till now. 

I got it removed Wednesday and getting a biopsy for it. The dermatologist wasn't concerned. He said it's triangular shaped and would have same halfs if cut in half. Also, he said its mostly unison in color with small patches of dark brown. 

 

whats your input?

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newmanmark's picture
Replies 18
Last reply 4/28/2017 - 3:33pm

I have been on the Ipi/Nivolumab treatment since December.  During the combination portion of the treatment several patches of facial hair turned white.  Now that I am on the Nivolumab maintenance phase I am now starting to develop depigmentation on my hands, arms and face.  For those who have had similar side effects did the vitigilio progress and get worse over the course of the treatment or did it tend to stay in the spots where it started?  I know it's a good sign that the immune system is active but im not excited at the thought of it spreading everywhere.

Mark

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