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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ecc26's picture
Replies 16
Last reply 7/7/2016 - 10:31pm

With Roswell Park's relatively new frameless Gamma Knife system, they treated 19 brain mets over the course of about 2 hrs. I have to say, having had 4 procedures with the frame, I can't imagine why anyone would choose that method- I have permanent dents in my skull and each time when the frame came off it took me a long time and a lot of medication to get over what I can only describe as the worst migrane you can possibly imagine (nausea and vomiting inclued) despite some pretty significant pain medication intened to combat that.

I had to get up about half way through because my back doesn't appreciate being in that position and not moving, but so much better, and for anyone that doesn't have that many mets, I expect it would be much easier. They said there was only one other person who had had as long a treatment as I had- drove up from NYC specifically for the frame free for the same reason I was so happy it was available- many mets and many previous treatments. Personal choice, but I am certainly glad I had the frame free option.

Otherwise, starting today steroids are being reduced, though I'll keep the Keppra for a few more weeks. First infusion of the combo Monday morning, so we'll see how that goes, but very happy to have something done about the brain mets. Always worked well for me in the past, hoping it does this time as well.

Good luck to all of you who are in the midst of, or just starting your fight. Please try and take some comfort in the fact that I've been fighting since 2011, have had whole brain radiation and now 5 rounds of Gamma Knife in addition to every FDA approved treatment (one right after the other- often as they became approved). I've never had an any time since the start where I was "in remission" or even "stable" and off meds, but I'm still going. It took me a very long time to come to terms with my disease and be comfortable enough to talk about it with anyone, so you will not get any judgement from me as far as how you come to terms, or what you share/when or what decisions you make for yourself regarding treatment.

I am well aware that every person and their case is different and I've been lucky, but keep fighting, keep looking for the next thing. It's ok to be upset and confused and feel down for a while with new diagnoses and setbacks, just don't stay stuck there. Use this forum, and any other support systems you can fine and lean on them to help keep you going, but don't give up. It's hard, but keep going, get yourself as much time as possible and don't look back and say "I wish..." or "I should have...", just keep looking forward, even when it's hard. We all have a good reason to fight- find that and keep going.

-Eva

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I am 47 years old; mother of 3; my youngest being almost 8 years old. Just looking for advice from anyone who is undergoing targeted therapy ( Zelboraf & Cotellic). I am Stage 4....in January my yearly scan showed 2 masses in my leg where the cancer originated in 2006. Between January and now, shortly after starting immunotherapy, which I had to stop after 2 infusions because of elevated liver studies, the cancer spread to my right kidney. A month after spreading to my kidney, it spread to my stomach. I finally was given the go ahead to start the targeted therapy....had to wait for liver studies to be normal again.....which seemed like it took an eternity! Now I'm scared to death that that I'm going to eventually have to stop this treatment if my liver studies become elevated again. Any suggestions on how to get your liver to cooperate with the meds? I'm trying to eat as healthy as possible but if anyone else is going through the same treatment, I would love to hear from you. Even if it's to compare side effects. Right now I'm going into my second week and nausea and some vomitting have been my main side effects; along with extreme fatigue. This morning, however I woke up with the raised, red rash that's super itchy under both armpits and on my kneecaps. Everything I've read so far is the oatmeal baths help the best. Anxious to hear from someone....I feel very alone in all of this...even though I'm constantly surrounded by family members who want to help. I just know I would feel so much better to connect with others who are going through what I'm going through. Hope to hear from someone soon! 

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Ajwells's picture
Replies 5
Last reply 6/29/2016 - 9:54pm
Replies by: Landlover, kathycmc, Gene_S, desertsun, Anonymous

I know that some temporary nerve damage was going to happen, and the risk for permanent was there. I'm just a little surprised about some of the things that were affected. 

My neck dissection was Monday.  Boy was that a lot worse than I had originally expected. Large incision down my neck, about 10 inches from my ear to my collar bone.  

They took out 27 lymph nodes. And I should probably note that my labs came back CLEAR!!  Not a single little node had any cancer in them!  So no more surgery and I'll be ready for immunotherapy once I'm all healed up!  

But back to the point.  I woke up from the surgery with very little control over the left side of my face. Doctors weren't worried about the facial paralysis being permanent. Every time they came in they made me make a kissy face and every time they did they were happy with whatever happened. My smile looks like popeye right now. Just the left half of my bottom lip won't move at all. It's really strange.  They did note that the numbness in my left ear is very possibly permanent. They had to peel s lymph node off of that nerve. Of course my neck is stiff. I can't really move it side to side and I can't turn my head to the left at all. It isn't particularly painful, my neck just won't let me turn it.

and now for the weird part.  The range of motion in my left shoulder is terrible. I can't lift it past like 80 degrees up. I can't reach for things. I can't lift it to tie my hair up. I try and stretch and loosen it up, which helps out some, especially right away in the morning.  

My doctor never mentioned the possibility of having to do physical therapy for anything like this, but this seems like the type of thing that would require some. My mom just went through some shoulder surgery and she was having the same range of motion issues I'm having now and she goes twice a week for PT.  

has anyone else dealt with weird spread out nerve damage from surgery? especially in the neck.  

Also one more time: MY LABS WERE CLEAR!!!!!!!  

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

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Landlover's picture
Replies 16
Last reply 6/30/2016 - 12:31pm

Hi-  I am currently weighing my options for my stage 3C melanoma which I recently posted about.  One thing that surprised me was my Onc (Dr. Lao U of Michigan) said that he would get scans "every so often" vaguely and stated he'd do a brain MRI about once a year.  That seems too long to go to me.  What are other people experiencing as the standard for stage 3?

I am getting a little overwhlemed by all of the unknows, guessing, worrying, and not great options.  I want to have faith in my doctors and care, but I am worried.

Thanks

Peggy 

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Happy_girl's picture
Replies 6
Last reply 6/27/2016 - 11:59am

I posted yesterday abt a spot near my kidney.  That was incorrect - it's a sub cm spot on my liver.  I am just terrified that it as spread.  I just hit my 2 year mark.  This appointment put 26 months- so I was becoming confident- now I'm back to fear.  I'm praying this is nothing next time I get scans.  Could that be???

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/25/2016 - 12:27am
Replies by: desertsun, Casitas1

Just thought I'd mention this since I hadn't read about it.  Concurrently with tapering off of prednisone about 6 weeks ago, I developed a "head cold".  MRI (done for tracking tumors, not the "cold") showed lots of inflammation in the sinus area.  Tried everything--anti-biotics, allergy meds, etc.  Nothing helped.  No sense of smell and limited sense of taste (no jokes).  "Cold" moved into my eyes to the point where my vision was affected by constant mucus.  After 6 weeks of feeling like crap (not complaining; minor nuisance in the scheme of things), finally bit the bullet and went back on prednisone (short course and low dose).  What a difference.  I hate being on prednisone and will have to deal with its side effects (though the extra energy is welcome)--but it's nice to get relief.

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Bubbles's picture
Replies 2
Last reply 6/25/2016 - 10:11am
Replies by: Bubbles, beans920

I figure you're heading toward a week of breath holding and zappage! Just wanted you to know I've been thinking about you! Hang tough! C

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Sara.Alexander's picture
Replies 4
Last reply 6/26/2016 - 7:52pm
Replies by: Everymoment, Anonymous, Bobman

In August of 2009 I had my annual full-body skin check. My doctor chose to biopsy 4 moles as a precaution but told me I had nothing to worry about. The results were not expected as 1 was melanoma, 1 was pre-cancer, and 2 were severe atypia. Based on those, she did another biopsy which came back as melanoma insitu. I've since had over 50 biopsies with everyone coming back atypical. I just had my 6 month skin check and I pointed out 2 moles that concerned me. The doctor was not concerned but did biopsy one of them as a precaution. Needless to say it was melanoma insitu. So I've now had 3 melanomas in 6 years and I just turned 37. I have also been diagnosed with dysplastic nevi syndrome. I go back for my 3 month skin check in 2 weeks and I'm scared. I feel like there's more I can or should be doing. I'm the only patient like me for my dermatologist. I love her and don't want to leaver her practice, but I wonder if I should see someone else in addition as none of my moles looked like melanoma and the doctor was surprised by the pathology results. I live about 50 miles from Baltimore and Washington DC. I plan to discuss this with my doctor, but would appreciate feedback and suggestions on doctors as well as how to proceed prior to seeing her.

Thank you in advance,
Sara

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Anonymous's picture
Replies 4
Last reply 6/24/2016 - 6:40pm
Replies by: lisa joy, Anonymous, Janner

Hi everyone, 

I was diagnosed with Stage 1A Melanoma - .75mm, non-ulcerated, very low mitotic rate. I located it on my stomach (left flank). I do once per year to my dermatologist for skin/mole check. I grew up on the beaches of Destin, Florida. Growing up we didn't know about sunblock or at least we didn't care about it. We never knew about skin cancer. I would also visit tanning beds here and there before school proms or events. Ugh...so stupid!

I had a WLE and one lymph node removed as well. I always thought with a stage one diagnosis that I wouldn't have to have a lymph node removed. My doctor (melanoma specialist) is VERY proactive and did not want to risk "guessing" if it spread or not. All Margins were widely clear and lymph node was clear - no evidence of metastatic melanoma. 

I also had a brain MRI and PET scan. Again, so scary to go through all these tests and didn't realize with a Stage One diagnosis that I needed them. But, I'm thankful now that I had them. All scans are clean and clear. Thank God! 

This entire process took 10 days. All of it went by so fast and I'm still trying to process it all. I have two young girls and  so scared. I still am scared because of all the scary stories I've read on the internet. I should probably stop searching on the internet. I still feel like a cat with claws stuck on the ceiling and I'm afraid to come down. Now I look at every spot on my body afraid that it's Melanoma. My doctor tells me that we are in prevention mode now and I will go see him every three months to check my skin. He tells me to be thankful that we caught it at an early stage. I am thankful but I'm also afraid. I'm trying to find my new normal without being afraid. 

My goal is to become an educator on Melanoma and teach our youth about how to protect their skin. I will also preach to my adult friends about getting their skin checked. Another goal of mine is to change the tanning bed business in our country. I know it's a big hill to climb but I'm up for the challenge. 

Thank you for reading my post. Knowing that there are so many Melanoma friends out there helps. 

 

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wifeofron's picture
Replies 3
Last reply 6/23/2016 - 9:32pm
Replies by: jennunicorn, wifeofron

Is it normal to run a low grade temp and feel like one has the flu after a WLE? 

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Happy_girl's picture
Replies 1
Last reply 6/24/2016 - 9:59am
Replies by: Bubbles

Hey everyone! Well- needless to say I am terrified right now.  The dr office just called and said they saw a tiny spot near my kidney- too small to do anything with.  I have been stage 3a for 2 years.  I am panicking that this is melanoma.  Could it be something else? 

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Anonymous's picture
Replies 3
Last reply 6/24/2016 - 10:40am
Replies by: Janner, Anonymous

I also hear that moderate or more cases highly Atypical moles carry a risk. What is the risk of Melanoma forming in a normal moles?

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JoshF's picture
Replies 7
Last reply 6/24/2016 - 12:05pm

Well things continue to creep along. I'm almost a month out post surgery. I've got a long week coming up at MD Anderson. I'm entering the Phase 2 trial of Adoptive Cell Theraphy combined with low dose IL-2 and ipi.

I found out today that my blood tested positive for HLA-A201. I had already knew I was HLA-A2 positive but needed a higher resolution blood test for the 01. I also tested positive for the Mart-1. So I'm scheduled to have CT Scan, do cardio work up, see doc and leukpheresis done on Thursday. I'm also going to see surgeon to have tumore harvested in hopes they can create TIL's in the event that I need it in future. I certainly hope not but after dealing with this for 5 years, you just never know. It's the damn roller coaster Maria talked about in earlier post. Not to mention that any ache or pain is related to the crap that lurks in my body. I'm praying this is another complete response for me that is DURABLE!!!! The key word that eludes so many of us.

Thank you to everyone who has chimed in with support, information and just genuinely caring for each other. It's difficult to relay to friends and family unless they've been in our shoes. You always hear....stay positive, stay strong etc... well that's another battle we all fight. Who doesn't fight to be positive or stay strong and fight through this...we all do but I'd be lying if I told you the darkness doesn't creep in. Everyone means well and I hold nothing against them but coming here I know everyone deals with much of the same so like I usually do, I give thanks for all of you. Be well.

Josh

Let's work for better treatments....for a cure!!!!

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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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