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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J.bun's picture
Replies 7
Last reply 11/24/2017 - 3:41pm

No matter where you are, or what you do - wishing all who celebrate a 'Happy Thanksgiving.'

My melanoma nightmare began 1 year ago at this time (diagnosis day before; consent forms for treatment day after) - and so I cannot help but reflect.  This year I am thankful for all the advances in medical treatment - and for all of you!

Your posts have provided endless inspiration, answers to lingering questions, and lots of support!  While the battle is different for each of us, I know we are on the same team.

 

 

 

- J.

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1Cbras's picture
Replies 7
Last reply 11/24/2017 - 3:33pm
Replies by: Anonymous, 1Cbras, Janner

Hi,

On November 13, I had an excisional biopsy of a suspect lesion on the sole of my foot. The pathology report is still outstanding. ( It's going to be an anxious Thanksgiving). Is this a normal wait time for results. Thanks in advance for input. Extremely Anxious.

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Anonymous's picture
Anonymous
Replies 16
Last reply 11/24/2017 - 2:30pm

Hi, I'm new to this. My husband has just recently been diagnosed with melanoma stage four. He has 4 lesions on his brain. I am looking for survivors of this. He is only 50. We have 3 small children, 1-8. Please good or bad I want to know if anyone had mets on their brain.

Greg and Elisabeth 

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Dina108's picture
Replies 19
Last reply 11/24/2017 - 11:22am
Replies by: Jeff_in_FL, Sailor, Becky, Cindyco, Dina108, Bubbles, Anonymous, coltbnme, jyc

hi All: 

Just yesterday the doctor informed me that I have mucosal melanoma in my sinus (ethnoid). I had no symptoms, except for what I thought were sinusities--stuffy nose,slight nosebleed. now waiting for PET scan. Im in Richmond VA. Does anyone have any suggestions for support groups here. 

Please let me know what I should research -- everything is so overwhelming and in reading the posts, there are so many acronyms that pretty soon I am sure I will master. 

What should I expect in terms of testing -- they have the PET after which the treatment protocal will be set. 

What are some cutting edge treatments out there? What should I ask the doctor? No idea what questions I should even be asking. It's been a roller coaster ride. 

Any help and suggestions would greatly appreciated. 

Dina

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Jubes's picture
Replies 5
Last reply 11/24/2017 - 6:00am
Replies by: Mat, Jubes, cancersnewnormal

Hi all

 

i haven’t posted for a while but I’m back at work and my last 2 pet scans were clear! They show inflammation consistent with my ankylosis spondalytis in my spine hips and right shoulder. I see my rheumatologist regularly and am on a mix of sulphazalasine plaquenil and anti inflammatories  but at the moment I have a lot of pain in my right shoulder and bicep. It’s been like that for five months. I have had 2 cortisone shots which have helped me get to work but the pain keeps coming back. At this point the rheumatologist has offered me either surgery or infliximab. Down side of surgery is it takes 6 months to heal. Also not sure if the surgery would just drain out the fluid ( there’s lots) or also fix the torn tendon. Down side of infliximab is possible side effects of MS ! Or melanoma. I did infliximab for 6 months last year and it worked very well. Then my melanoma in lung grew and we had to do a left lower lobe resection. The oncologist is not convinced that there’s a connection but the rheumatologist is not so sure as we don’t have much evidence to go on. Also he says if it’s even only a 1% chance of progression due to infliximab I might well be in the 1% as it’s happened before. 

Are there any stats of recurrence after infliximab that might help me with the decision?

btw the rheumatologist thinks if infliximab is not a problem then overall it will be better for me if I live longer, as if I keep going with all this inflammation I might have very serious joint problems as I get older if I don’t take it

 

thanks for listening and much love and respect to you all

 

anne-Louise 

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Anonymous's picture
Anonymous
Replies 2
Last reply 11/23/2017 - 4:58pm
Replies by: Tressa48, Janner

Had a shave biopsy last week.  Nurse called yesterday and said I had to have an excisional biopsy done soon but not to worry because it's not melanoma.  I'm scheduled for the next biopsy on December 4th.  I'm just not sure why I have to have another biopsy if it's not melanoma.  This is what my path report says:

Diagnosis:
Skin of lateral back, T4, right, shave biopsy:
Melanocytic nevus, compound type with unusual architectural features and
severe cytologic atypia. See microscopic description and comment.
Margins negative for nevus in the plane of the sections examined.

MICROSCOPIC DESCRIPTION:
Histologic sections are that of a shave biopsy of skin to the deep
reticular dermis. Centrally, is a compound melanocytic proliferation. The
majority of the lesion is an epidermal melanocytic proliferation consisting
of enlarged vacuolated melanocytes with variable cytologic atypia forming
irregularly sized and shaped nests and single cells which are unevenly
spaced along the dermal epidermal junction. In the superficial dermis are
smaller melanocytes forming nests with a tendency for smaller nests and
single celled growth with descent. A rare mitotic figure is present in the
superficial dermis. There is an associated mild to moderately dense
superficial lymphomononuclear infiltrate and associated dermal melanocytes.
Immunohistochemical stain for MART 1 performed and interpreted here
highlights the aforementioned features and rare scattered melanocytes
demonstrating upward migration but no well-developed upward migration or
confluent growth is identified. Deeper sections have been reviewed.

Any help interpreting this would be greatly appreciated.

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Anonymous's picture
Anonymous
Replies 1
Last reply 11/23/2017 - 1:45am
Replies by: MelanomaMike

First, I want to thank everyone on this site. It is a wealth of information and the compassion here is amazing. I posted yesterday about the accuracy of my biopsy results related to the streak in my nail. I got some great advice from Janner and polydad, then I received a call from my doctor today since I spoke with only the nurse yesterday. She said she was reassured that there was no cancer found, when I asked her what the cause of the pigmentation was she said “it is possible that the site of the pigmentation was so small that it was missed on the biopsy. Another option would be to remove part of the nail and repeat the biopsy.” Im flabbergasted, we had discussed removing the nail and on the day of the procedure she convinced me that she was confident we could biopsy only under the nail fold to determine what was causing the pigment. What should I do? I was already questioning the results and then she drops this on me. Is this common? Any thoughts would be appreciated, thank you!

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MelanomaMike's picture
Replies 8
Last reply 11/23/2017 - 1:37am

smileyYeeeeHa!, first off, hope everyones doing good or at the very least "stable", i have some good news, i saw my Oncologist today & shes puttin' a bit of a "Rush" on my treatment, Keytruda that is, i start next week Nov 22nd versus waiting for all my scans to be completed, blood work is completed & looks good, bone scan great, i just need MRI and CT those are already scheduled in the next week or so..Man i cant wait!, it feels like an eternity since the bad news of my lung surgery being cancled due to multiplication of tumors, treatment made more sense.Im ready warriors! i have my TapOut shorts ready, my YouTube "RED" loaded with Fight Songs, boots are by the door im ready, all i need now is Big John McCarthy {UFC Ref} to let me at the mofo {Mel tumors} and its on!..ill keep ya posted after my infuse & document my journey for the new folks who may start Pembro...you all rock here at MRF!...Love ya all!, Mike...

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Anonymous's picture
Replies 5
Last reply 11/22/2017 - 8:04pm
Replies by: TexMelanomex, Anonymous, Bubbles, sister of patient

My husband is currently undergoing immunotherapy for stage 4 melanoma due to tumors found in his lymph nodes.  My niece just called and mentioned her daughter has a small grade fever and is wondering if they should stay home tomorrow (Thanksgiving) as to not bring germs around my husband.  His Dr. has never said one way or the other rather he should take extra percautions not to get sick.  He works, and is out and about around people all the time.  I left a message for our Dr's nurse but am told there aren't to many people in the office today so it may take them a while to get back to me.  I thought I would ask this group what your experience has been.  He is otherwise healthy, seldom gets sick.   I am worried that if he gets sick that they might want him to skip a treatment until he is better, and we don't want to skip any treatments as he is responding so good to them.

 

Thank you.

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/22/2017 - 5:55pm
Replies by: Dhva, jennunicorn, Anonymous

Has anyone experienced flushing of the face while being infused with Nivo?  The flushing (deep red) has occurred about halfway through the infusion for the past two (4 treatments so far) treatments. Severe fatigue at the same time and then a sweaty sheen. Is this common?

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Anonymous's picture
Anonymous
Replies 3
Last reply 11/22/2017 - 1:03pm
Replies by: Anonymous, Richard_K, Prd10

Question:  once you have been on taf/mek, can zel still be an option if needed?

thanks in advance. 

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/22/2017 - 11:29am
Replies by: Anonymous, Polydad, Janner

I do not have a pathology report yet but received a call from the nurse today to let me know the biopsy of my nail matrix revealed no cancer. She said the report stated that the nail matrix tissue was completely normal. I’ve asked for a copy of the report obviously, but i was expecting some sort of explanation as to what is causing the pigmentation in my nail, this has been such a stress to me and I would like to have closure. Should I just accept that this is benign Melanonychia with no explanation? I’m afraid of a missed diagnosis. I’ve had three dermatologists look at it before the biopsy and all were of the opinion that it was benign. I’ve had it for at least 3 years and there has been no noticeable change (although I haven’t monitored it closely), can I be sure that if it were subungual melanoma it would have been revealed via the biopsy? 

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sweetaugust's picture
Replies 15
Last reply 11/22/2017 - 11:22am

Hi guys,

I haven't been on the site in ages.  I just haven't had the time with two jobs.  I wanted to update you all that I started the trial for Pembro (Keytruda) back on Halloween in 2012 and I came off of the trial back in January 2017.  I had a great response and am totally healthy.  So lucky! 

So I just wanted to check in and say hello and give a great update. 

All the best, Laurie

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/21/2017 - 9:24pm
Replies by: Anonymous, jennunicorn

I had my biopsy last Wednesday, my dermatologist told me I should have results by Monday (yesterday) and assured me I would have them before the holiday (Thursday). Still no results, and now I am freaking out thinking that the reason for the delay is because it is not going to be good......I emailed this morning and received a response from the nurse that they were still in process. Can someone please give me some insight, is the delay a bad thing? It's Kaiser, not sure if that makes a difference. My anxiety is so bad and this process has taken so much time, it's been 3 1/2 weeks since my initial appointment, and that was only because I was lucky enough to grab an appointment someone else canceled. 

Any thoughts or insight is appreciated......

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Anonymous's picture
Anonymous
Replies 4
Last reply 11/21/2017 - 2:43pm
Replies by: Anonymous, jennunicorn, Becky

I had my biopsy yesterday for the streak I had under my nail. My dermatologist sampled my proximal nail matrix and did not remove my nail. I sent her an email today asking if a dermatopathologist or general pathologist would review the samples and she said it would be a general pathologist. Is this a big deal for the biopsy? It’s Kaiser so I don’t know if I have any other options.

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