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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lakegirl67's picture
Replies 5
Last reply 7/21/2016 - 6:20pm
Replies by: Anonymous, lakegirl67, SABKLYN

I was diagnosed with Melanoma in situ on my neck in April. My slides were read by a dermpath and I got a second opinion from another dermpath within the same group who concurred with the first. I have already had the WLE with 8mm clear margins, however, I want a second opinion from a different dermpath. May i request any dermapath anywhere in in the US? If so, may I please have recommendations? Thanks so much.

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Maria C's picture
Replies 6
Last reply 6/23/2016 - 11:05pm

Hi all,

I've been thinking about everyone here lots this past week and am so very grateful to have this community to turn to. I've never been a fan of roller coasters - their extreme ups & downs are like torture to me - but that's what melanoma has felt like during this past year since my June 2015 diagnosis. I'm on this crazy ride and I can't get grounded.

A week ago today, I "celebrated" my 1-year mucosal melanoma dx with my first craniotomy. Here's a recap of the Ride Down to that step:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-pa...

Ride Up: Very happy to report that the surgery went spectacularly well in that I have been in zero pain since waking up and am still 100% "me" - my husband says I haven't missed a beat. I still have my lion's roar and exercised it the moment my family gathered around HOURS LATE after recovery because they followed the hospital rules that said no visitors until everyone arrived (I have 4 20-yo's!, all traveling separately from CT to NYC). Who taught them you have to follow every hospital rule?? Not me!!

So here's how it went down - my second opinion at Sloan with Dr. Gutin, a highly experienced neurosugeon with the same first name as my dad (Philip!), was characterized by an urgency that we need to move fast to get my tumor out. That was last Monday, he squeezed me in his schedule for last Thursday, and THEN on the day of the surgery, he pushed the operation up from 1 p.m. to 10 a.m. after viewing the pre-op MRI. It turns out the 4.3 cm mass contained a 1 cm tumor that escaped the gamma knife treatment and kept bleeding and growing. The anticipated 4-hour surgery only took 2 hours, and again, I woke up in no pain at all. Needless to say I am thrilled to have been in Dr. Gutin's care.

But yesterday I left the first follow-up appointment with my new team at Sloan feeling deflated. It was really just an info-gathering session as I get on the team's radar as a new patient (Fridays are their team meeting days). There is still urgency because of the 2 new brain mets from the June scans, which of course indicates that the disease is progressing, and fast. While the oncologist commented that I don't look or act like someone who has my stage melanoma, he did make a comment that I have "uncontrolled brain mets" and mucosal melanoma is particularly aggressive. Putting two & two together, I am freaking out.

It's so unnerving, as I feel like my brain is jiffy pop and I don't know when another "pop" will take off and take me down with it! 

Again, so very grateful for this community, and for this particular day when my favorite childhood friend will be bringing me a pot of ginger-chicken-meatball soup from my ever-growing anti-cancer recipe trove...

Maria - Stage IV, MM, brain mets, responder to ipi/nivo combo

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scpage's picture
Replies 5
Last reply 6/24/2016 - 11:42am

WLE and SLNB completed yesterday....results in five to seven days.  Oncologist indicated that should the results be positive, I will require more surgery to remove all the lymph nodes from the area where the SLNB was performed(right arm pit).  But.....is that my only option???  Am I wrong in thinking that before we remove those lymph nodes, that maybe we should be looking for cancer elsewhere in my body, and develop a plan to treat that?

I sincerely appreciate any advice you can offer!

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Toby0987's picture
Replies 2
Last reply 6/23/2016 - 4:22pm
Replies by: youngann, Anonymous

I'm 3b since 2013, had a small bout of pap thyroid cancer but had it ablated and now that is gone. I'm at mayo and doing watch and wait. Went for my 6 month pet in April 2016 and radiologist called me at 9pm and told me to get to er because he thought I was having an appendicitis. I told him I was staying the night across the street from mayo hospital and have no physical symptoms of appendicitis. I went to my Mel onc the following morning and he said it may be a smoldering appendicitis but wasn't sure. He had me come back for another pet in 2 months (June 2016). My LDH in my blood work went from 185 to 222-still in limits but 225 is top normal (I think it is LDH-whatever the tumor marker test is) well did the pet last week and the lymph node next to my appendix is down in size and my white count is back to normal (I had a cold last pet). But my appendix and area around it shows pet activity still. Dr said it is not as bright as Mel normally would show but said he couldn't rule it out. He said he couldn't do a fine needle because it is bad to perforate the appendix. He referred me to the general surgeon there and surgeon said in so many words-melanoma has been known to go to a persons gi tract before but she didn't know either. She also wasn't sure if it is appendicitis then why is it still active after 2 months and there are no symptoms of appendicitis. My Mel onc is supposed to call me next week/the gen surgeon said maybe an elective appendectomy if it doesn't resolve itself. So what do you think. The Mel onc (dr mcwilliams) is open to my thoughts and will shape care based on my wishes. Do I insist on surgery? Let it marinate? Do another pet in 3 mths or 6 mths? Ultrasound? Any other ideas? Head in sand? I'm 42 and in shape. 

 

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BrianP's picture
Replies 3
Last reply 6/24/2016 - 10:12am
Replies by: Bubbles, BrianP

This might to be the next generation of CAR T-cell Therapy. 

https://www.newscientist.com/article/2094832-first-human-crispr-trial-gi...

Sounds like it may be going to phase I soon.  I searched CRISPR on clinicaltrials.gov and nothing came up. 

Did find this trial that is not yet recruiting but seems really interesting as well.  Anyone out west looking for a trial might want to contact Dr. Ribbas' office to see if it might be starting soon.

https://clinicaltrials.gov/ct2/show/NCT02775292?term=ny-eso-1&rank=2

Brian

 

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Gene_S's picture
Replies 0

This is a great website that has a lot of comparsions info about drugs and comments from patients taking them, There are a lot of comments from this forum group. 

https://treato.com/Melanoma/?a=s

Best Wishes,

Gene

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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ecc26's picture
Replies 6
Last reply 6/23/2016 - 9:04am
Replies by: Bubbles, Maria C, ecc26, Polymath, Mat

Having been removed from the clinical trial Frday afternoon and sent home with discs and reports, I took both to my local oncologist's office first thing Monday morning. On my way out I stopped by the Radiation oncologist's office to let them know what was happening and that images/reports would be uploaded into the system for viewing soon. They happened to have had a no show, so the put me in for a quick appointmet, went and got the discs to view at least quickly, then after the appointment took them back to be scanned.

I expressed my desire to get an appointment ASAP for Gamma Knife, but also my understanding that this might not be possible for a week or so given scheduling. They said they would get in touch with the facility and see what they could do.

Yesterday around noon I had the follow up with my local medical oncologist that had been scheduled before my trip to Boston. We discussed when to get started on the back-up plan (Ipi + one of the PD-1's in combo), tossed around ideas of waiting until after the brain mets were treated vs possibly starting before. Steroids were a factor in the conversation related to whether we would wean off first or go ahead and start since I didn't yet have an appointment for Gamma Knife. No real decision was made, but the general thought was that it would be ok to start on the higher doses with the steroids, then as I am weaned off steroids, perhaps reduce the dosages of the drugs (especially Ipi) to help reduce possible side effects.

After that appointment, I got the call from the Gamma Knife facility- they made an extra appointment on a day (tomorrow) that they don't usually do treatments to get me in. I was not expecting that at all. Called my medical oncologist to let him know, and got a quick answer that we would start infusions on Monday. Waiting on a follow up call from him today with a few more details, but in general pretty happy about how quickly things have moved along. In the process of shuffling things at work (meetings, etc) to make sure things get covered appropriately for when I need to be out for things, and hoping I get some success from these drugs that I've already failed without a lot of side effects. Have to try.

-Eva

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hawaii marcus's picture
Replies 7
Last reply 6/28/2016 - 8:59pm

Aloha, my name is Marcus Reimel, and a 3 yr survivor of Sinonasal Mucosal Melanoma in Honolulu, Hawaii. I started with these MPIP boards in 2013, and also joined a private FaceBook support group specifically for MM patients and caregivers.  

If anyone wants to join the private FaceBook group, please go to FaceBook and reach out to me.

You are not alone with the 1% of MM out there, so please feel free to comment, email me or Facebook me.

 

Aloha from Honolulu!

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quincy3068's picture
Replies 3
Last reply 7/1/2016 - 9:02pm

I am new to this form and have several questions.  I have numerous sun damaged spots on my face and head.  Some of the spots are crusty and others , lesions, bleed if I scratch them.  I have one on the right temple area of the face.  It hurts really bad if I push it in or rub it.  I feel like I am getting pin pricking that goes way down deep.  In fact any of them that I touch have that pin pricking feeling all the way down.  Any comments on these spots and bleeding lesions?


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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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Anonymous's picture
Anonymous
Replies 8
Last reply 6/22/2016 - 1:44pm
Replies by: Anonymous, DZnDef, Ed Williams, jennunicorn

My sister had an in-situ several years ago and I am confused by the advice her dermatologist.  He said with her skin type to try and get some sun exposure everyday.  He claims that vitamin d is crucial for the skins immune system.  I believe she only gets 20-25 minutes of sun a day. Has anyone ever heard of this ?

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LibbyinVA's picture
Replies 7
Last reply 6/21/2016 - 8:18pm

I know many look to this support site for positive messages. So I'd like to share that this year, 2016, is my 10-year NED anniversary...not bad for someone who was told in 2005 to "get my affairs in order." I remember that time like it was yesterday and it was a terrifying. In early spring of 2005 I was diagnosed with stage IIIb metastatic melanoma. My prognosis was grim...6-9 months, 12-months at best. Well, here I am and it's 2016 and I am doing great.

If you are where I was in 2005, please remember you are not a number. You are a person and no one is born with an expiration date stamped on them. Use the Melanoma Research Foundation site to educate yourself about melanoma...this site has everything you need so take full advantage of the excellent services offered here.

Also, seek treatment at a designated melanoma center. If you don't have one where you live, find one and go there. Look into what clinical trials could offer you. Please don't say no to being part of a clinical trial until you have at least taken the time to learn about them. Find a doctor who will take the time to answer all your questions no matter how many questions you have. You want to be an active participant in your care.

Trust me, it's well worth the travel and extra effort involved in seeking care at a designated melanoma treatment center. I can only speak from my own personal experience but in my case I firmly believe that it made the difference between life and death. I traveled to New York and participated in a clinical trial under Dr Anna Pavlick at the NYU Clinical Cancer Center's Melanoma Program. Deep down inside I know she saved my life. 

I sincerely hope my story will help other melanoma patients stay strong and hopeful. A melanoma diagnosis does not mean you've been given a death sentence. I personally know countless stage III and IV people who are alive and well 15, 20 and even more years following their initial diagnosis. Miracles do happen...I believe I am one.

Two of my favorite sayings relative to melanoma are, "I have melanoma but melanoma does not have me" and "I am living with cancer, not dying from it." Feel free to claim one of these slogans for yourself or come up with another one. Whatever you do, just don't give up!

Feel free to respond, disagree or ask me questions. You are not in this alone!

LibbyinVA

I have melanoma but melanoma does not have me!

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