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.

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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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Anonymous's picture
Anonymous
Replies 5
Last reply 5/1/2017 - 4:02pm
Replies by: Anonymous, UBContributor, Janner, casagrayson

I was diagnosed with stage 1a melanoma on my upper right back 5 months ago. It was shallow, .30mm and I had an WLE with no further treatment.

A couple of days ago, I discovered a hard, immovable lump on the back of my neck. it is just about an inch and a half  or so to the right of the very middle of the back of the neck and is perhaps 0.5 to 1 inch above my hairline.

the size is small, and it feels somewhat smaller than a pea. to give you a better idea, if i am sitting with my neck up, and if i pass my hand over the region, i feel nothing. even if i move my neck in all directions, and just pass my fingers over the region, nothing can be felt. but if i tilt my neck to the bottom and press hard, it can be felt. if i tilt to the bottom and to the left, it can definitely be felt even more.

it's not causing any kind of discomfort so far. but if it is pressed hard on and off for a 10-15 seconds, there is a level of pain sensation, though nothing excruciating. it does, however, seem to be embedded deep within.

I am scared as I have been told if melanoma spreads, the first place it can go is the lymph nodes in neck or armpit. I am otherwise healthy and fit and have not recently been ill or had any infections. . Have made an appointment to see the doctor but wondered if anyone here has any experience with something like this

Thank you so much

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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 4
Last reply 5/1/2017 - 9:18am

  Does anyone have any suggestions for someone that is on Opdivo/Yervoy and their mouth is so dry it is difficult to eat.  Water does not seem to help and he is using a rinse for dry mouth, but its difficult to use it as often as he feels the need.

 Thank you!

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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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ECHO's picture
Replies 5
Last reply 5/8/2017 - 10:18am
Replies by: ECHO, jyc, Cindyco

hi everyone,
my mother suffers from mucosal melanoma now and we couldn't find an effective drug. because of this disease, her right face swells for over five months. we've tried PD-1,and PD-1& yervoy combo, but they didn't work. She did a genetic test. It’s a ctDNA test using NGS. The result shows that there’re 4 genes mutated out of 66
MAP2K1 c.199G>A(p.D67N)
GNA11  c.547C>T  (p.R183C)
NRAS   c.182A>G  (p.Q61R)
KIT    c.1961T>C  (p.V654A)
As recommended, she took cotellic&PDL-1, but sadly, it didn’t work either. I felt that we were running out of our way to cure the disease. So can anyone give some suggestion? I really appreciate!!


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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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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 5
Last reply 5/4/2017 - 10:32pm
Replies by: AB, Lydia, Cynlee

I have a mole on the sole of my foot. It appeared around 18 months ago but recently it became really itchy. When I looked it had changed, it appears to have grown legs! I went to see my doctor last Saturday, who referred me to a Dermatologist. They rang Monday and booked me in for Wednesday. I received a letter from my doctor with advise on 'cancer referral' - oh he didn't mention that! 

Anyway, I went to the dermatologist who had a look through the scope and photographed the mole, he spent about a minute looking at it and then said it will need to be removed. The nurse said I would receive an appointment 2-4 weeks through the post. I got a call today (Thursday) to go in tomorrow to have it removed (Friday) 

 

sounds silly but but this has me worried now the speed of it all! Should I be worried?? 

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Momofjake's picture
Replies 20
Last reply 6/1/2017 - 4:28pm

Hi there,

Just wondering if anyone has heard from Josh? I don't check in too often, but hoping I didn't miss an update. 

Jake is amazing BTW:) He has gained almost 20lbs and is moving out this weekend to take a class or two. It's 20 min down the road, he can still come grab meals...but he feels like his own guy for the first time. He will be 20 in May. He started this almost 3 years ago, so happy to get to see him feel like a real adult and go have some fun! Brain scan May 21 to see if the SRS worked. But he's not worried about it! 

Always praying for all the daily struggles found here. 

Kerri

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Christine.P's picture
Replies 7
Last reply 4/27/2017 - 1:56pm

Greetings fellow warriors - I recently found out that I have new tumors in my leg, hip, and back (primary tumor was in calf 2015) which means that ipi/nivo and long term nivo did not work for me. I am currently waiting for molecular testing results to find out the make-up of the tumor to determine the next step.

One of the options my oncologist told me about is a herpes vaccine that is injected directly into a tumor. I was wondering if anyone else has used this treatment and what their experiences have been.

Thank you.

Christine P. 

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Anonymous's picture
Replies 2
Last reply 4/30/2017 - 9:52pm
Replies by: Anonymous

Has anyone have mohs surgery after excision did not get it all?  3rd primary in a year.  The first 2 required a surgeon due to thickness.

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Dear MPIP Community:

This week we were contacted by Schlesinger Associates (www.schlesingerassociates.com), a market research company, that has a research opportunity available for patients in the Phoenix, AZ area. 

They are interested in interviewing melanoma patients diagnosed with Stage III or Stage IV. The interview would be in-person in their Phoenix office and will last 1 hour. Participants will be compensated $150.

If you are interested in this study, or know someone who is, please email Alia.Khan@schlesingerassociates.com by Friday May, 11th  to see if you qualify.

Thank you, as always, for your valuable input. 

Best,

Shelby - MRF

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Anonymous's picture
Anonymous
Replies 1
Last reply 4/26/2017 - 12:29pm
Replies by: Bubbles

  Hello--I am new here.  First of all, thanks for all the topics and posts-really helps to know we are not alone!

 My husband was diagnosed with stage 4 melanoma and is now on the Opdivo/Yervoy regimen.  He had his second infusion yesterday  (25th).  His main complaint is extreme tiredness and "cotton mouth".  His glucose level was 222.  He was told to fast the next time he has labs (three weeks away) and see if it comes down.

 Could this be a side effect--or should we be concerned with diabetes and this is something that should be checked now and not wait three weeks? I keep thinking that if it was a big enough concern the doctor would have suggested it be tested sooner.

 Anyone have any thoughts about this?  Thank you!

A Concerned Wife

 

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Anonymous's picture
Replies 1
Last reply 4/26/2017 - 1:15pm
Replies by: Anonymous

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