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
Replies 4
Last reply 12/31/2015 - 7:15pm
Replies by: Bubbles, LASS

My husband was diagnosed with melanoma in 2010. His melanoma was found in a cyst on his head. He had surgery, a skin graft, sentinal node was negative. He had a satelitte met off from the primary. He did a year of interferon and had radiation on his scalp. He was NED for five years. In September of this year, 2015, they found multiple mets in his liver. He is BRAF negative. He is 47 years old and otherwise very healthy. He got into a clinical trial for yervoy and opdivo. After 3 treatments (the day before the 4th treatment was scheduled) he had a scan that showed the tumors had not responded to the treatment. The tumors were growing rapidly. They had spread throughout the liver. Numerous mets in both lobes, the majority being the left lobe. Mets had also spread to the mesentery membrane. 2 small mets in lungs. His LDH levels were 2443. His oncologist admitted him to the hospital to get taxol/carbo in him right away in hopes to slow the rapid growth. He has had one treatment and will have another on Jan. 8th. We saw his oncologist yesterday (dec. 30th) the swelling in his liver seems to have gone down. He feels tired, discomfort in abdomen, of course. He has lost a little over 20 pounds. He is very strong, works still partly from home. His oncologist referred us to Dr. Salama, a high risk melanoma specialist at Duke. We live in SW Virginia. Does anyone have any opinions about Duke's melanoma center or any other advice to give? Thank you for your support. Prayers to all of you who face this terrible disease.

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/4/2016 - 1:06pm
Replies by: Lil0909, Anonymous, mjanssentx, Cee, Becky

I have read a lot of people are against in and saying people are a fool to do the treatment 

 

I was given 3 options 

wait and watch 

interferon

yervoy

 

i had choosen interferon because I don't want the long term effect damage from yervoy like liver damage tyroid problem etc etc..  

 

I am am just wondering for those that was on interferon treatment what side effect was the most problem and did you really loose a lot of hair?   What is the best advice to get through the hard treatment, what help keep you immune system up etc..   Please don't call me a fool I am just asking for some advice and hear from other that was on it.... All that matter is we are all fighting in the battle and asking for the same support,,, 

 

thank you and my thoughts are with all of you 

Melissa 

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Lindsayblueyes's picture
Replies 5
Last reply 12/31/2015 - 10:46am
Replies by: Anonymous, SoCalDave, Lindsayblueyes, kylez, Janner

Going on a 10-day Caribbean cruise next month. Any suggestions for the best type of sunscreen to use? Any ingredients better than others? Thanks.

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Replies by: CHRISNYC, kylez, Anonymous

So my husband had to change healthcare plans , and kicks in on jan 1 with orginal medcare, part F and prescription part D.  He is only 64 but disabled from a car accident 14 years ago.  When we first started his medication, the specialty pharmacy hooked us up wiht the Patient Access Network - she was so kind, they took care of everything.  Our allotment of $ is coming to a close, and won't cover next months medicine.

Its kind of scary, we need to switch pharmacies and tomorrow I will call the Patient Access Network and ask them if we can reapply.  I have a good job, but without support our meager saviings will quickly disappear.  The cost of the drugs is freaking my husband out.......I will be on the phone tomorrow, I just went onto the Novartis site and another co-pay support site.  Charles is on the Braf combo MEK and Tafinlar.........he is stuborn and proud and now sick with worry about using all of our $, making initial noises of if we can't afford it he won't take it anymore.  I know that he doesn't mean it, but the stress that is starting to build around money is a dark clound on us.................

Can anyone share of any sites or resources that you used to assist you to pay for your medication?  We file jointly, we might have to split tax returns........do crazy financial wizardry just to get by.  Any stories or what has been working for you would be such a relief to recieve. I see so many Go Fund Me pages....that can't be us, there has to be other resources.

Thank you, 

Rita

Rita

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Donnasue0611's picture
Replies 3
Last reply 12/30/2015 - 12:12am
Replies by: Janner, Donnasue0611

Hey guys. I'm new here. My son has had several severely atypicals removed (he's 15)...and we had another removed yesterday. I understand his. I know what to look for now and I even have pointed out several to my Derm who agreed that they needed to go. 

 

I had a mole removed that bothered me. I picked at it several times (I know bad idea)...and this last time it grew back darker and stung a bit. It also looked very few around it periodically throughout the day. My Derm said it looked okay but he always takes off what I want. It was perfectly round but was elevated. It came back as "severely atypical melanocytic hyperplasia" which my Derm says isn't melanoma or melanoma in situ...but the step before it. 

 

Many questions. What do I look for in these lesions to insure that I don't have more?  How close to melanoma is it?  Do all melanomas cause some sort of discomfort???  Or  not?

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chrisholder's picture
Replies 4
Last reply 1/4/2016 - 8:30am
Replies by: chrisholder, tbh1835, jyc

I've posted a few times, but many may not remember... Diagnosed with mm in right max. sinus in May of this year, started ipi/nivo course in June but knocked out of trial after two infusions with hepatitis, blown thyroid and long hospitalization.  Once recovered from side effects started Pembrolizumab (Keytruda) in Sept which has kept tumor confined to sinus - and no mets so far.  But since the tumor is still growing I will start aggressive radiation next week for 7 weeks while continuing Pembro to retain its benefits and to possibly gain the Rad-Vax effect (synergistic effect of dying cells being transformed by Pembro into a 'vaccine' against further cancer cell growth).  Likely will lose the sight in one eye where the tumor is encroaching, but hopefully will drastically reduce tumor size.  As many of you more experienced than I know, the side effects of the radiation will be very difficult and some likely permanent.  Would be grateful to hear from face/sinus radiation veterans about how you dealt with sores/burning/loss of salivary/loss of appetite, etc.  Thanks!  Will update as I can.  Chris

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EJJ's picture
Replies 3
Last reply 12/30/2015 - 11:30am
Replies by: davekarrie, EJJ

I am a third generation melanoma survivor in my family. Dx in 06 returned 08. My Derm. I have been seeing since 06 has retired and I am now looking for a new Derm. Those of you like me know just any old Derm won't do. Does anyone have advice on Derms. At Mayo in Rochester MN?

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On Christmas Eve I noticed a dark spot on a mole that I've had since my teen years (52 now).  It is located directly between my breasts in an area that is extremely bony.  (images attached, one is closeup--I am now horrified that the discoloration is larger than I was able to see when the photo was just saved on my phone.  Glasses, soon!)  I am having it removed at my primary physician's office tomorrow and the nurse mentioned doing a shave biopsy, rather than a punch, when I told her the location.

I just had a punch biopsy done on a the lower leg for a brand new dark spot that appeared (was atypical nevus with dysplasion--clear margins on the biopsy) and it seemed deeper than it would be possible to go on my chest without hitting bone.  

Has anyone had a punch biopsy over a bony area (chest, shoulder blade, elbow, kneecap, shin, etc.)?  

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Gwenmorgan's picture
Replies 5
Last reply 12/29/2015 - 12:04pm

So, I made it through 2 treatments of ipi/nivo and then hit the ER for a night and the hospital for a 6 day IV treatment.  Paperwork says Colitis and I am on big doses of prednisone and working on the step down now.

I am a difficult patient and a control freak so my stay was memorable for many I am sure - I pulled my IV and ran for it the first night in ER after the CT and chest Xray- why stay in ER when you can go home and wait for results- and get a bath??  Plus I have children that needed to have Christmas party stuff done for school - can't do what you need in the hospital for the holidays...Anyway, I had to convinve myself it wasn't prison and the hospital did let me go outside with an escort and I napped in the super warm December sunshine one afternoon - I had secretly escaped earlier with my IV squid and the help of a friend to make sure I wanted to ask for the freedom first...it has to be fun for me too:)

The children came to visit and tortured the nursing staff with the call button - they were trying to turn the tv on...it was quite a surprise for the nurse to see 3 kids in my bed snuggled up coloring pictures but they were very sweet to everyone.

And of course, there is still the obsession with the bugs that I think are crawling in my skin that cannot be seen - that made for a memorable night of some poor nurse searching the bed with tweezers collecting dirt and sending it to the lab.  Maybe it is the brain mets, maybe the ipi?

BEST news is the news from the Chest CT is that both lung mets are no longer measurable.  There are some swollen nodules that will be monitored but it was nice to see my personal tumor chart drop from 11 mets (brain and lungs) to 9 in the brain - some of which have been hit with cyberknife but are still hanging out.

A few weeks more for brain MRI.  I am nervous.  I want to continue the treatment.  I told Dr. Gibney and anyone else who would listen that I would rather have diarhhea forever than cancer just keep me in the program...we will have to see what they decide.  If it looks good I think he will let me stay on Nivo.  If MRI shows progression then we need some new options.  He mentioned that there is a new brain met trial starting at Lombardi and possibly WBR - but I seem to feel that is palliative only and I want something more aggressive.

I want the children to be old enough to remember what I look like, smell like, what I fussed at them about.  I want them to hear my voice as their conscious when they are older and remember their mom.  I don't want them to remember only the cancer.  I am hopeful for days when I forget that it is even here.

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marceline_queen's picture
Replies 5
Last reply 1/1/2016 - 6:58pm
Replies by: jae p, JoanieM, Anonymous, marceline_queen, stars

Hi everybody,

I'm a law student in my mid 20s, and in the midst of finals I was taking a bath and noticed the mole on my leg was bleeding slightly. I'd had it for years and always meant to get it looked at, but it seemed impossible to me that it would actually be cancerous. But I guess with the added stress of my first semester of school, it started looking pretty suspect to me. I scheduled a dermatology appointment for the week after.

This was a few weeks ago - since then, I have been diagnosed with Stage IB and I'm having surgery next week to excise the skin around the mole (it was bioposied at that first appointment) and to have a sentinel lymph node biopsy.

 

Honestly, I'm still in shock. My parents and boyfriend told me it was good I was getting it checked, but surely it wouldn't be anything- and it was! It was thin, but the mitosis rate is worringly high, thus the lymph node check.

There's only a ~10-20% chance that it's spread to my lymph nodes, but less than a month ago this wasn't a thought in my mind. I can't believe I got a cancer diagnosis. I'm trying to stay positive and figure out how/if to share this news with the people in my life, but it's incredibly surreal.

I know most of the people here probably have much more dire situations and I don't mean to dramatize what I'm going through; it's hard to keep a sense of perspective with things like this. And it's strange knowing that, even if it hasn't spread, I'll be getting skin checks every few months for the next couple years, and always worrying- at least a little. 

Anyway, I just wanted to introduce myself, and I'll report back with my results post surgery. Hope everyone is finding comfort and support this holiday season. 

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jennunicorn's picture
Replies 8
Last reply 12/31/2015 - 5:45pm

I just wanted to write a short update for anyone else who is on or will be on the Yervoy 10mg/kg dose and might be anxious about side effects. 

I had my first infusion on December 15, so it has been almost 2 weeks now. The only side effects I have delt with are fatigue, dry eyes, and eczema flare ups. I have had eczema for a long time and I get it on my fingers. Every morning since the infusion my fingers have been broken out and itchy, I have cream for it so I use that like I normally would and they are fine within an hour or so. It doesn't bother me the rest of the day.

Being tired a lot kind of sucks, but it is definitely manageable. It has gotten better since the first week, I'm not as exhausted throughout the day.

Dry eyes is something I didn't really know about beforehand. My oncologist said it is something she hears frequently from patients on Yervoy. She advised me to get moisturizing eye drops and use them when needed. Those definitely help.

Overall, it has been fairly easy so far. The next infusion is January 5th, keeping my fingers crossed for continuing manageable side effects.

Best wishes to all,

Jenn

Jenn - Stage IIIB  (currently doing Ipi [Yervoy] adjuvant treatment)

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Beehappy's picture
Replies 1
Last reply 12/27/2015 - 1:57pm
Replies by: geriakt

My husband (3c, 43yrs) has been on the ipi vs nivo trial for a little over 3 months.  All seemed to be going well and he completed the 4 possible ipi doses last month.  He has been only on the possible novo for the past month.  

He was doing well - only suffering constipation issues, hemmeroids and fatigue until the last 3 weeks - his mood has changed drastically and recently his arm has begun to swell and turn purpleish (from shoulder to finger tips).  We ended up in the ER yesterday because we were on a trip and the on-call doctor wanted him to be evaluated for blood clot possibility (because of the swelling, we were afraid to fly 3 hours home.  No blood clots were found and no one can tell us why this swelling is occurring.  It comes and goes randomly but his arm never fully goes back to "normal".  This is his "good" arm - the other arm is the site of the lymph node removal.  The side that is swelling is, however the side that has the port.

He is not dealing with this very well.  I believe the drugs are impacting his ability to handle things appropriately so I am here trying to figure out if anyone has heard of this arm swelling as a side effect?  If so, is it temporary or permanent?  

I am grateful he is getting treatment, but it seems the docs are sometimes as clueless about the side effects as we are.  They just don't seem to get the amount of fear and disruption this can have on daily life or a family system.

The weary wife of a warrior.....

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blastr11's picture
Replies 3
Last reply 12/28/2015 - 9:37am
Replies by: Anonymous, geriakt, gregor913

Hi all, I have just joined the MRF and have started reading some in the forum. I am stage 3c, diagnosed on Oct 13th of this year. My tumor looked nothing like Melanoma. It is called Amelonotic as it had no pigment or color to it. I waited a long time to have it checked. It was 5mm external, 8mm internal with cells found in 4 lymph nodes under my arm. I was sent by my Oncologist for a brain scan immediately, it was clear, thank God. I had to wait some time before my PET to let my surgical area heal. My PET was clear, thank God.

I now have started ipi in the 10mg/kg dose as it was approved for stage 3 by FDA 15 days after my diagnosis.I have had one treatment and the next one is due in 3 days. My side effects have mostly been fatigue up until the past week. The itching and rash has progressively been getting worse.

I was looking to see if anyone else may be at my stage and be using the ipi as their treatment.

God bless you all......Mike

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Anonymous's picture
Anonymous
Replies 6
Last reply 1/7/2016 - 8:01pm
Replies by: Anonymous, ldub

Christmas night going to bed at my in laws I walked by a mirror and noticed a dark spot on the back of my arm. It looked like someone got me with a sharpie marker. I tried to wipe it off. I realized it wasn't coming off. I looked at it closer and it is a black, slightly raised, mole. I have never had a mole in this location. It is a new mole.  I have no moles that look anything close to the color black on my body. I haven't measured it yet, but it is bigger than a pencil point, maybe between 2 and 3 mm.  

I am out of state and will be visiting with my PC and a dermatologist when I return home next week. I don't think I would've noticed this had I not been at my in laws, the mirrors in my bathrooms are much higher than theirs.

Has anyone's melanoma stared out as a small new black mole? Could you share your story, or link me to a story already in the forum. 

Thanks.

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jamieth29's picture
Replies 21
Last reply 1/9/2016 - 10:33pm

Just wanted to thank everyone here for the immense information and support everyone gives. After being on the braf drugs for about 4 months and using them for as a sort of neo adjuvant I'm going for surgery dec 30th at university of Chicago. I will have a resection of my leg where I've had many intransit spots but confined to about a 4 inch area. I am also laproscopic surgery to my iliac area to clear some lymph nodes out of that area. I had one external iliac node show up on pet and ct enlarged to 18mm. The drugs reduced it to 7mm and that was on my sept ct scan. The spots on my leg also disappeared. Hopefully pathology shows necrotic tissue. I'm nervous to say the least but also know i have to get through this and see what happens. The plan is to stop drugs after surgery and see if it comes back. I am going to look for some kind of trial. Not sure what yet but might be a vaccine trial. The last four months have been almost normal going back to my carpentry job and having 0 side effects from drugs. I'm really nervous about lymphedema but if i get it i will cross that bridge when i get there. Also nervous for the kids seeing me in the hospital again. I will be inpatient for a full week through new years so that sucks. Be kind of interesting to see how this approach works. Doctor says i will still be stage 3c after surgery and if all goes according to plan 3c ned so finding a trial will be a challenge. I do believe right now the drugs have rendered me ned. Anyway have a beer for me on new years. Hope everyone enjoyed Christmas. I'll update with path results after i get motivated after this surgery. Doctors are saying 6-8 weeks till I'm fully recovered so I'm setting my sights on 5 weeks just cause i like proving something to myself. Take care everyone.
Jamie

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