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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Anonymous's picture
Anonymous
Replies 4
Last reply 4/14/2018 - 11:11pm
Replies by: jrtufo, cancersnewnormal, guynamedbilly, Anonymous

Hi. Summer 2017 I was diagnosed with a Satage 1A Melanoma. It was pretty random. A tiny scab that wouldn't heal on my right calf. Very small but it came back Melanoma and a month ago another mole came back atypical. Now I have developed a hard immobile pea sized lump under my left ear up by the jawline. Do you tell your melanoma doctor about this or do you call your normal physician. And what are the chances it is even related? Kinda is ruining my day fussing about it. I don't like the "unknown" part of all of this. Like to me stage 1a should mean no worries go get checks but I find myself connecting all sort of weird dots. Is that normal or hypochondria?

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Anonymous's picture
Anonymous
Replies 3
Last reply 4/12/2018 - 4:13pm
Replies by: Janner, Anonymous

Hi. Summer 2017 I was diagnosed with a Satage 1A Melanoma. It was pretty random. A tiny scab that wouldn't heal on my right calf. Very small but it came back Melanoma and a month ago another mole came back atypical. Now I have developed a hard immobile pea sized lump under my left ear up by the jawline. Do you tell your melanoma doctor about this or do you call your normal physician. And what are the chances it is even related? Kinda is ruining my day fussing about it. I don't like the "unknown" part of all of this. Like to me stage 1a should mean no worries go get checks but I find myself connecting all sort of weird dots. Is that normal or hypochondria?

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/12/2018 - 5:30pm
Replies by: Anonymous, Bubbles

Beginning new trial of Cobimetinib and Atezolizumab.   Anyone have any experience with this or know anything about it? 

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Raco's picture
Replies 7
Last reply 4/13/2018 - 9:03am

Ok call me Dumb but this BRAF thing is getting me.  

Which pathology report should tell me what is the makeup of my Melanoma ?   Who do I ask?
I have 3 reports from the following should it be listed on any report?
1. Dermatologist from the initial mole that sent it  to be biopsied?
2. Surgeon Oncologist who did initial surgery that removed tumor and two lymph nodes. Sent to be biopsy?
3. Surgeon Oncologist who did the second surgery to remove the rest of my lymph nodes Sent to be biopsy?
4. Oncologist who has started me on Opdivo?

I really really do not want to go through this, NONE of us should.
All this information is mind boggling.
I hate you Melanoma, you do not play fare be gone.

Sorry for my rant

Robbie

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Meet stage IV survivor and baseball hall of fame star Mike Schmidt. Meet others, find support and have fun.

www.safefromthesun.org

 

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tedtell1's picture
Replies 2
Last reply 4/12/2018 - 12:07pm
Replies by: tedtell1, Janner

Friends;

I have discovered a weird thing with my left pinky fingernail. Since I have an unknown primary...wondering if it could be subungual. I have a picture, but don't know how to post them, does anyone know how to post a picture? It probably isn't as it seems it would be unlikely for me to have subungual. It has no "black streak" but it is a streak that affects the whole nail, just doesn't have any color to it.

Thanks,

Ted

Ted

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Anonymous's picture
Replies 2
Last reply 4/12/2018 - 3:59pm
Replies by: Emma91, Anonymous

During Christmas of 2016 (15 months ago) I was 28 weeks pregnant with twins. I got a pimple that wouldn’t heel and bleed a lot. It would develop a scab then I would knock it and it would start bleeding again etc.

when I had my twins (feb 2017) it finally heeled and was always bright red. (I just thought it was a red scar.) fastward to about January 2018 (1 year on) it had started to grow out again. (Once again I am pregnant if that affects anything) I started knocking it because it was getting quite big and again it will bleed and bleed. Now it is the size of 5 mm in diameter and about 3-4 mm raised. When my dr shaved it off said it was extremely vascular, bleed a lot and needed to be burnt off for about 15 minutes. I have to wait a week for the results, being 28 weeks pregnant with 1 year old twins and a 2 year old I am really stressing. From what I have read I feel this is the only thing that fits my story and am concerned because I have had it sooooo long. 

 

Please all thoughts are welcome. I keep telling myself I am being silly and it will just be because I am pregnant with extra blood causing it to pop out. 

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tedtell1's picture
Replies 5
Last reply 4/15/2018 - 8:35pm
Replies by: jjk17, gopher38, Hukill, doragsda

Greetings everyone;

Things have been going well recently, clear scans and generally the Nivo has been treating me okay. I am currently receiving the treatment every 2 weeks. I have been given the opportunity to start the once a month regimen. I know other people have started this....does anyone have any information/input on that? I know initially there were some negative reports. My doc has several patients doing it and none of them have had any problems. They have seen a small amount of inflamation in my right lung that causes a persistent cough and doc thinks it is probably from the Nivo, but it is manageable for now. I also have pain in my hips...but again it seems manageable. 

Like to hear from anyone who has experienced/read about the new regimen,

Thanks and keep trucking,

Ted

 

Ted

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MrG's picture
Replies 1
Last reply 4/11/2018 - 8:36pm
Replies by: Janner

Hello All,

I had a mole removed in March and the diagnosis was 'compund nevus with moderate dysplasia' and it noted the margins appear free of melanocytes.  With that said, I had a severe dysplastic mole removed a year ago and went back in for a wide margin removal of the site. The report notes that should the pigment persist or the lesion recur, more complete removal is recommended. Given my background, should I go ahead and insist on having another wide margin removal?  

Thanks for the advice!

 

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Anonymous's picture
Anonymous
Replies 12
Last reply 4/17/2018 - 3:47am
Replies by: Anonymous, bjeans, Janner, Nicole78

Hi Everyone, my name is Nicole , I’ve just been diagnosed with melanoma and that changed everything, I can’t sleep properly :( I have up and downs thinking that I have cancer and that is shocking :( The report from the shave biopsy show a Clark level 1 , Breslow thickens - N/A which is not sure what’s that... peripheral: 2mm, deep 0.5mm. I had the excision and waiting now for the biopsy . The doctor said that he took as much he can and I really hope that the biopsy will come up good. I have another one on my back which is just pyaplastic compund so I will remove that one as well. I’m sure there are people with worse case :( I never thought that I will ever be diagnosed with melanoma as my doctor always said that European people are unlikely to have it so it was a big shock for me the result :( I’m crying a lot , I have two kids and I’m thinking at the worst :( I have moments when I think , it’s ok ,it will be ok but then I’m thinking, it’s cancer , it’s there , anytime can come back , I’m suspicious of each mole on my body now :( it’s not easy...I feel sorry for everyone here having melanoma and I think we just have to hope that the science will discover a cure and we all be safe! 

Nicoleta Tufis

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Scooby123's picture
Replies 6
Last reply 4/17/2018 - 5:17pm

Hi Guys,

To all taking vitamins, I would like to know what vitamins you guys take and did you have to get the thumps up by your consultant before taking them. I never get a yes and no if ok and at moment on keydruda.

i am going through meanupause, thyroid issues and on keydruda.

vitamins I take are zinc, magnesium, garlic, b2, vitD,cod liver oil, Cq10, plus a gut bacteria tablet.

After taking zinc, magnesium, B2 my wee was bright yellow anyone on these have had same issue. If so is it normal,

Thanks guys

Scooby ❤️

 

 

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Steve D's picture
Replies 7
Last reply 4/19/2018 - 9:45pm

My wife is on a Opdivo/Yervoy treatment and has had cyber knife on her 5 brain mets. We are 8 weeks into treatment and the docs are starting to talk like its not workking. (for 6 months earlier she was on Tafilar and mekinst and responded well till we found the brain mets) Docs are talking about returning to TAF/MEK medication but my understanding is that it doesn't work well above the neck. Any ideas about how long this immunotherapy can take to work (12 weeks I've heard) and when to jump to something else?  

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abeluta's picture
Replies 1
Last reply 4/10/2018 - 12:05pm
Replies by: Janner

Hello. I am a 41-year-old woman from Romania and I apologize if I do not express myself correctly. In December 2017 we got the diagnosis of melanoma in situ completely excised with clean edges. For my silence I asked for the second opinion and the result came in three months (March 2018) totally different - Spitzoid type extensive melanoma in the surface Breslow 1.3mm Clark 3. The anatomopathologist who worked the first time does not explain why she the result came so that all the damage in depth was under 1 mm (she had seen 0.6 radial growth in the epidermis) and sent the lasers to 3 of the opinion that came with malignant melanoma Breslow 0.7 and Clark 3. I'm totally debuslated. I have 3 totally different results, if I analyze the results nothing coincides. neither the depth nor the mitosis or the rest of the details in the description. What do you advise me to do? Spitzoid melanoma how does it look? my lesion had an atypical appearance with irregular edges. I did CT with a contrast substance on 4 segments (head, thorax, abdomen and pelvis) and went out well, my lungs said I had two 0.5 mm nodules but were calcified and unrelated to melanoma and the echo soft parts in the inguinal region came out ok with ganglia in normal limits. I am scared, I do not know what to do, but I can help with advice. I'm thinking of sending biopsies to another country but I do not know where.

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Anonymous's picture
Anonymous
Replies 10
Last reply 4/13/2018 - 9:54am

Hi, my husband is currently getting nivo treatments for stage IV. 

We have asked his Dr. if he should stay away from alcohol and have never really gotten an answer.  We are not big drinkers by any means but would like to know one way or the other if this is an issue.  A few months ago he had four beers at our daughters wedding.  He told his Dr. and he just said "oh, that's fine, special occasion".  That comment sounds like it's something he shouldn't do on a regular basis.  It seems to me, when fighting cancer you would want to stay as healthy as possible, so why risk doing anything unhealthy.  On the other hand, his Dr has never said anything about any restrictions, or about nutrition either for that matter.  I understand some things are common sense but I think if eating a healthy diet for example was essential to recovery, someone would of mentioned it to him. 

I'm just wondering others opinion on both drinking and eating healthy, for someone with cancer, as opposed to someone whithout. 

Thank you!

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Anonymous's picture
Anonymous
Replies 2
Last reply 4/15/2018 - 9:50am
Replies by: Anonymous, jetdoctor67

Hm. Got a letter from my insurer saying the denial of claim was reversed on appeal. I was aware Castle Biosciences was appealing, but did not expect they would succeed. (Castle was not going to collect from me anyway.) 

”Upon review of the documentation submitted, the request is approved. The DecisionDx-Melanoma signature indeed may be an independent predictor of metastasis risk to assess and design individual preventative measures of metastases for patients such as this patient. The reviewer that made this decision is a Board Certified Medical Doctor in Dermatology. The reimbursement associated with this approval has been processed and you will receive a corrected explanation of benefits.”

(Happily no metastatic occurrence almost 2 years post diagnosis but keeping an eye on things..) 

Thanks to all who share here, and best wishes (and prayers) especially to those fighting active active disease.

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