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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laulamb's picture
Replies 6
Last reply 6/21/2016 - 3:08pm
Replies by: ilikepralinen, fortiz, MoiraM, KimberlyVU, Anonymous

Hello,

How do you know if your melanoma is BRAF postive or not?  Should it be on the pathology report when they removed the sental lymph nodes and wide area excision? 

Thanks!

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FromPerth's picture
Replies 5
Last reply 6/21/2016 - 3:55am
Replies by: Patina, Anonymous, DZnDef, MoiraM, desertsun

Hi all,

I have been reading a few posts and thought I would share my own story.

I am a 35yr old male from Perth, Western Australia. I was recently diagnosed with Stage IV melanoma.

It started almost 2 months ago when I discovered a lump under my right armpit. After ultrasounds and a biopsy I was told I had metastic melanoma. The lump was an enlarged lymph node.

I then went to have a PET scan which confirmed I have a met on my left thigh. My biopsy also confirmed that I am BRAF positive.

This week I start my first treatment of ipilimumab and nivolumab. I have been placed on a clinical trial at Sir Charles Gairdner hospital. I have read some promising results from this trial, but I am not getting ahead fo myself.

I will try and keep this updated on a regular basis for anyone who might be going through the same thing. 

I try not to let my thoughts wander into a negative space, but I guess in situations like this it cant be helped.

Good luck to everyone else out there going through the same thing.

 

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Landlover's picture
Replies 5
Last reply 6/20/2016 - 10:26am
Replies by: Lori Ann, Landlover, Fen

Surgery for my  left neck dissection was last Tuesday and I am finally feeling well enough post.  What a mentally and physically rough ride- but as with most things in life the "This too shall pass"  mantra was true and each day got a little better.  I was discharged thursday (with drains pulled!) and was never so grateful for my own bed.  My surgeon is Dr. Kelly Malloy at U of M and I can't say enough about the great care I got there.  My post op visit is this coming wednesday and I hope to get the path results then too.  Then, on to the next part where I meet the oncologist and discuss treatment options.  What a wild ride. 

I took a short walk outside today-it has been a sublime spring weekend in Michigan and it did me a world of good. 

Thanks for being a support for me and for each other. 

Peggy 

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Jennab0525's picture
Replies 10
Last reply 6/20/2016 - 7:56am
Replies by: laulamb, Anonymous, Jennab0525, MoiraM, jennunicorn

Hi everyone! I don't post on here often but I can assure you I read each and every post everyday! Yesterday I just had my 3 month scans. I was absolutely terrified for this scan because for weeks I have had a barrage of aches and pain all over my body (bones, knees, elbows, cough, you name it!). The biggest concerning pain was a dull ache under my right rib cage  which radiated to my lower back. Instantly I thought liver mets! I've been googling and terrifying myself for weeks. Well, low and behold I go to my scan and it came out completely CLEAR! Nothing, nada, perfectly healthy! 

i am only nine months out from my stage IIIB diagnosis. 3.5mm ulcerated tumor on upper right shoulder, two nodes removed, one with two isolated tumor cells. No treatment only doing watch and wait.

My point of this post is to give encouragement to all those other hypochondriacs like me that it is so easy to convince ourselves of the worst and to immediately jump to that conclusion but we should always take a step back and a deep breath that not every pain is cancer. Most of the time there is a logical explanation. Like for me, it is a muscle strain! My aches in my bones, well I've been working a lot around our new house (painting, yard work, cleaning, etc) so that's the explanation for that! Please don't get me wrong, we must stay vigilant with our diagnosis but it's best not to worry and cause anxiety over something you don't know for sure. Don't freak out until the docs give you an answer to freak out about. Let's live our lives one day at a time and take our diagnosis one step at a time. 

I have an amazing oncologist and we have the best relationship. He said that in his 20 plus years of melanoma experience, of all his various stage 3 patients that less than 20% have progressed to stage 4 And of those who did progress, most of them are now NED!! How's that for some reassurance!? 

So, for all the doom and gloom we sometimes read, I just want to give some reassurance and hope to all my fellow stage 3 and 4 friends on here. Even though we've never met I pray for you all the time! We're all in this fight together!!

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Ajwells's picture
Replies 2
Last reply 6/20/2016 - 6:28am
Replies by: Anonymous, youngann

My suprahyoid neck dissection is tomorrow. As I understand it, there will be a pretty significant incision down the side of my neck.  Drain tube and all of that. As far as care for my neck after surgery, will I be in any kind of neck support contraption? A brace or something in that genera?  I can't imagine being able to move my head around a whole lot without pain. Which, duh, pain. But it should be immobilized for a while until the insidious has healed, right?  I really don't know why I'm asking. Wandering mind. Like it really matters if I have to wear a brace or not. I'll be in bed for a significant amount of time.  I got myself a nice cooling pillow. Since summer is happening in Nebraska.  I'm freaking out. Scalpels and fingers digging around right at my jugular and all of that jazz. But I'm ready to get this thing over with!  Is the scar bad ass?  Can I ask them to like not do the cosmetic closure to try and hide it so it can look bad ass?  Just kidding.  Off to Hibiclens!  Surgery is bright and early at 7:30am tomorrow!  

27 year old mother of three. Diagnosis stage 3a.  Awaiting immunotherapy. 

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Dachipmunk1's picture
Replies 2
Last reply 6/20/2016 - 3:23am
Replies by: Anonymous

LONG story back in august of last year I went to my derm for a full body six month check up, I go every six months because i work out doors and it helps me check areas i may have missed everthing looked good he resceduled for my next six months begining in november i was taking a shower i noticed invetween mt toes was bleeding it was a mole my gp did a full excision and rechecked my body said it was nothing thinks i just rubed it open came back benign... right after thanksgiving i took my shirt off and noticed blood on my neck got a mirror out infront of my other mirror and noticed another bleeding mole on my neck i placed a bandaid on the torn open skin and called my gp that monday,the bandaid caused an reaction to my skin all over the back my my neck doctor looked at my neck said he didnt see anything suspicious give it a week or so to heal up and call him back...so instead i called my dermotoligest sceduled an apointment and told her what happened she looked at it noticed my full body check up 29th of aug just under 4 months ago and said it was nothing I told her i wanted a biopsy, she got pissed [guess she was busy] and did a biopsy and she burned it shut biopsy results came back ulcerated compound or interdermiss almost impossible to tell but no atypia cells in sample but has deeper margins if reocures reexcision my be relevent.... this worried my so i went back, she was pissy again said there was nothing she could do it was benign, so i request a second doctor, he read the patholigy and did a wider deeper excision noted the previous one and had them compared, new one came back no nuvis identified skin clear margins compared to sample a nothing found he said no cancer there yah go so i noted my swollen lympnodes in my neck he gave me an anti biotic nothing happened so back to my gp told him what happend he felt my nodes said give them a few weeks reactive to the biopsys they never went down now he sent my to a ENT told him what happened he sent me for a neck ct with contrast no tumors found but 4 swollen lympnodes largest being 1.6cm he was not conserned but ct caught a massive sinus infection he gave me ciprofloxan for 4 weeks to see if it would help never helped now to sinus surgery.. all i wanted was a node biopsy .....so he did a fn biopsy and sinus surgery benign needle sinus surgery did nothing for my nodes now im getting gut pains by my liver blood in my stool swollen nodes by my groin full blood work ultra sound on liver kidneys panc and gall bladder unremarkable full blood work 10 times everything great still having pain and blood full abdominal ct was done unremarkable also doctor starting to think im crazy so i requested a full node biopsy on my neck three nodes were removed all came back benign i now have three more nodes poping up by groin still have visable blood in stool dark red and constant headaches doctors think im crazy i been sick for months they just did a endoscopy all clear on biopsys mild gastritis im confused and scared doctors dont take me serious and more nodes poping up idk what to do

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Dachipmunk1's picture
Replies 7
Last reply 6/19/2016 - 7:35pm

LONG story back in august of last year I went to my derm for a full body six month check up, I go every six months because i work out doors and it helps me check areas i may have missed everthing looked good he resceduled for my next six months begining in november i was taking a shower i noticed invetween mt toes was bleeding it was a mole my gp did a full excision and rechecked my body said it was nothing thinks i just rubed it open came back benign... right after thanksgiving i took my shirt off and noticed blood on my neck got a mirror out infront of my other mirror and noticed another bleeding mole on my neck i placed a bandaid on the torn open skin and called my gp that monday,the bandaid caused an reaction to my skin all over the back my my neck doctor looked at my neck said he didnt see anything suspicious give it a week or so to heal up and call him back...so instead i called my dermotoligest sceduled an apointment and told her what happened she looked at it noticed my full body check up 29th of aug just under 4 months ago and said it was nothing I told her i wanted a biopsy, she got pissed [guess she was busy] and did a biopsy and she burned it shut biopsy results came back ulcerated compound or interdermiss almost impossible to tell but no atypia cells in sample but has deeper margins if reocures reexcision my be relevent.... this worried my so i went back, she was pissy again said there was nothing she could do it was benign, so i request a second doctor, he read the patholigy and did a wider deeper excision noted the previous one and had them compared, new one came back no nuvis identified skin clear margins compared to sample a nothing found he said no cancer there yah go so i noted my swollen lympnodes in my neck he gave me an anti biotic nothing happened so back to my gp told him what happend he felt my nodes said give them a few weeks reactive to the biopsys they never went down now he sent my to a ENT told him what happened he sent me for a neck ct with contrast no tumors found but 4 swollen lympnodes largest being 1.6cm he was not conserned but ct caught a massive sinus infection he gave me ciprofloxan for 4 weeks to see if it would help never helped now to sinus surgery.. all i wanted was a node biopsy .....so he did a fn biopsy and sinus surgery benign needle sinus surgery did nothing for my nodes now im getting gut pains by my liver blood in my stool swollen nodes by my groin full blood work ultra sound on liver kidneys panc and gall bladder unremarkable full blood work 10 times everything great still having pain and blood full abdominal ct was done unremarkable also doctor starting to think im crazy so i requested a full node biopsy on my neck three nodes were removed all came back benign i now have three more nodes poping up by groin still have visable blood in stool dark red and constant headaches doctors think im crazy i been sick for months they just did a endoscopy all clear on biopsys mild gastritis im confused and scared doctors dont take me serious and more nodes poping up idk what to do

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Boo79's picture
Replies 1
Last reply 6/19/2016 - 4:48pm
Replies by: casagrayson

I have posted on here a couple of times and received great information. I am wondering about a new mole I just discovered. Background: last summer I had two moles removed, one severely atypical and the other moderately atypical. Another was removed later that was moderately atypical but clear margins so didn't have to have any further excision on it. I go back in a couple of weeks for my six month skin check. 

A couple of weeks ago I noticed a new mole?? I only realized it was there on my neck because it was hurting right there. The mole is nothing like any others. It doesn't have any color to it. It also feels like a little pea is under it. None of my other moles are hard at all. Is this normal? 

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Ace226's picture
Replies 9
Last reply 6/19/2016 - 9:45am
Replies by: Richard_K, WithinMySkin, Ace226, Bubbles, Linny, BrianP, Anonymous, SABKLYN

My father has metastatic melanoma. Originally diagnosed in 1982 but relapsed in 2014. He has had several brain tumors (treated with gamma knife) and he has been on yervoy (still had spread) keytruda (worked really well but caused colitis) and now Opdivo. The opdivo has caused less side effects but now there is concern for 2 more brain tumors and melanoma in his cerebral spinal fluid. He had been seen this whole time at UVA but I want him to get a second opinion. Can anyone please recommend melanoma specialists for advanced melanoma? Preferably on the east coast but would be willing to travel. 

Also, if any body had had experience with melanoma in the CSF and tell me about it if appreciate it. 

Thank you!!

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ecc26's picture
Replies 3
Last reply 6/19/2016 - 5:44am
Replies by: Mat, Polymath, Bubbles

I haven't been able to post in quite a while again, for various reasong involving both work and treatment. I believe the last time I poted I had convinced the Melanoma department at Dana Farber in Boston to open a phase II trail for a CDK 4/5 drug that showed promise from phase I trials and was specifically targeting those with brain mets. I had to wait for my mets to be big enough for the trial, but did start the trial.

Each cycle was 21 days of oral medications and I was supposed to be there on day 1 and again between days 14 and 21, but given travel distance they allowed me to combine those 2 appointments as scans happened at the later appointment and bloodwork, ect happened on the day 1 appointment. I started the trial, and just had what should have been the appointment to start cycle 3, but have been removed. 

2 weeks ago I had a cluster of focal muscular seizures in my right hand/arm and lots of conultations ensued with the result being a low dose of steroids and starting an anti-seizure medication. At that point I had my suspicions that this trail wasn't going to work for me, but since the next round (which was to include additonal scans) was coming up I decided to wait to get some more results.

Well, the results came in after the scans and as I suspected, I was removed from the trial. While my body showed stabiligy, there was some growth, including a new met in my brain. Additionally, it appeared that one of the older tumers (that had had some growth) had some bleeding, which was the likely cause of the seizures. I'm aware that Melanoma brain mets are notorious for bleeding, but with all my 40+ brain mets I've been lucky enough to never have experienced it before.

Given all of that, my doctor in Boston was on the phone with my local oncologist before we even left the building, imaging discs and reports in hand.

I had already discussed a few days before a "back-up" plan with my local oncologist that will involve a (hopefully) lower dose of the Ipi/PD-1 combo. The lower dose combo was somethng presented at a recent conference that showed results were just as good, but side effects were much lower than with the original combo. I'll also be making an appointment for a Gamma Knife to get to the brain mets before they get any worse and try to get off at least the steroids. I'm still a little skeptical that a combination of 2 drugs I've already failed will do anything, but we'll see- I have to do something.

They're going to still keep looking for other trials (as will I) and mentioned a trial coming up also for those with brain mets, but it is not yet available. I can't remember exactly what the combo is, but it's a BRAF/MEK combined with one of the PD-L1 drugs. Not really even sure what phase- since it wasn't yet availalble we didn't spend much time on it.

Things will progress starting Monday, when I get a chance to follow up with my other oncologists and start making plans/appointments, but in the mean time, I'm wondering if anyone here has or knows someone that has failed both Ipi and a PD-1, then gone on to try the combo with any success. Currently all the data is for people that are naive to at least one of the drugs, and only some anecdotal evidence of people who failed both individually then responded to the combo.

Anything would help as I move forward with this plan.

Thanks,

Eva

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LibbyinVA's picture
Replies 8
Last reply 6/19/2016 - 1:23am

Just wanted to share some good news from an "old timer" here on MPIP. I am a stage IIIb warrior and right before Christmas I had a clean PET scan. I will be NED for 10-years this June and cannot wait to celebrate. I sincerely hope my story inspires anyone who is feeling down to keep fighting. When first diagnosed, my prognosis was very grim and here I am almost 10-years later and still a member of the "NED Club." So stay hopeful and let me know if you need help!

Libby

I have melanoma but melanoma does not have me!

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KimberlyVU's picture
Replies 4
Last reply 6/18/2016 - 2:48pm
Replies by: DZnDef, SABKLYN, youngann, Anonymous

I received my results of my WLE and SNLB yesterday and everything has come back negative! So I remain stage 1b and my doctor is very hopeful. 

I want to thank everyone on this board for sharing their stories and support during the last few months.  

Kimberly 

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Anonymous's picture
Replies 22
Last reply 6/18/2016 - 12:35pm
Replies by: Anonymous

I have no diagnosis of any skin cancer. A few days ago, when I got out of the shower there was an itch on my skin under my left forearm. I looked down, and saw this weird reddish bump where the itch was. I wondered if maybe it was allergies and thought that wow this is one heck of a reaction. The itchiness has subsided over the past few days, but the weird bump is still there.

Characteristics:

Location: Under left forearm on skin.

Size: Nearly the size of a U.S. penny on one side (19.05 mm), and shorter on another side.

Shape: A kind of irregular elliptical shape, asymmetrical. Some concave areas.

Color: A generally reddish color, with a more pinkish color near the border on one side. A few dark specks that I guess are dead hair follicles.

Feel: Still a little itchy. It is raised above the skin.

Relevant features: I am light-skinned with natural blonde hair.

Picture: Not very good, as I don't have a camera other than my big heavy laptop, but the bump should be clearly visible.

I'm going to walk in to my doctor's office today, as they have walk-ins on Saturday. In spite of the lack of dark colors, my fair features make it still cause for concern. The abrupt development of this "bump", its persistence, and its characteristics have me concerned.

 

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Anonymous's picture
Anonymous
Replies 3
Last reply 6/18/2016 - 12:02pm
Replies by: mjanssentx, Anonymous, Janner

I was wondering if some of you could chime in as I am somewhat confused after my dernatologist visit.  I went to my derm for a heat rash on my torso. Did a half marathon in 95 degree heat :-(.  She examined the rash and then wanted to do a mole check.  She said this isn't good you have a lot of moles you need to keep on top of these because your very likely to develope melanoma.   She wants me coming back every 6 months and she didn't cut abything out.   I've been stressed out since her comment.  I wanted to know if this is true?   I am 35 years old, in great shape, don't smoke or drink and come from a family that never had melanoma.  I have had a few decent sunburns in my life but never blistening.   I tend to tan pretty quickly when I'm in the sun. I pretty much lived in the sun since I was a tot and now im sick over this.    None of my moles bothered me before this comment but i now notice a lot of them.  I have maybe 150-200 on my body but they are all rather tiny maybe 1mm-2mm with about 6-7 in the 3-4mm range.   So does having a great deal of moles destin me for Melanoma ?  

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