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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Gordknight's picture
Replies 4
Last reply 8/16/2016 - 11:39am
Replies by: jennunicorn, Gordknight, MoiraM, Anonymous

First to start off I know that so many of you warriors out there have it so much rougher than I do and how you find the strength and will to carry on I only hope I can achieve some day in my life.

I had a stage 1a melanoma removed from my neck back in November of 2014 and have had many scares and removals since then (all of which were benign or midly atypical) I am kind of a moley white guy.  Age 33.  Anyway I noticed a new spot developing on my PALM of all places.  Luckily I was at my family Dr for an unrelated issue and he took a look at it and said he didn't think it was a melanoma (but I know he isnt a skin specialist) but it would be wise to follow up with my Derm.  I got an appointment with my derm for the 31st of this month and put on the wait list in case anyone cancels an appointment but of course I did the worst thing you can do and googled.  

Now I am convinced that this is an Acral Lintiginous Melanoma.  The pigmentation is on the ridges which is what inclines me to think so after reading liturature about them.  I know Im doing the right thing in going to see my derm (who is great) asap but it still makes me just want to crawl into a dark corner until that morning arrives.  Im sick with worry.  

I used to be a care free guy until I had my first melanoma and ever since then I have had my good days, but I still feel like the majorty of my life has been lived in panic and fear.  Anyway I guess I am just looking for opinions and encouraging thoughts.

I have included a picture of the new spot.  ( I know nobody here is a doctor and cant diagnose me).  Im just having a hard time imagining going through surgery again and more years of fear waiting for the other shoe to drop.. again.

http://imgur.com/qIaAiQD

Thanks in advance for your help.

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Anonymous's picture
Anonymous
Replies 3
Last reply 8/16/2016 - 10:41am
Replies by: sfyfe, SABKLYN, MoiraM

Hi there,

I'm 24 and I've never really had a problem with any skin growths/discolorations.  But last week (about Wednesday) I noticed a sore/tender spot just below my left eye that was a slight pinkish color.  Fast forward to today, it's a large skin irritation with a large black spot to the left (picture below.  It's grown very fast, and while it's not very painful (about as much as a popped zit) It's obviously very concerning and stressful.  

Would you guys have any advice?  I didn't really know where to turn.  Thank you!

http://i.imgur.com/0X9ZWNN.jpg

 

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Lee Parlier's picture
Replies 6
Last reply 8/17/2016 - 5:21pm

I finished my lasy yervoy 10 mg treatment almost 3 weeks ago. I got through the first 3 with minimal side efffects but my luck ran out as I was expecting. colitis, fatigue, nausea and abdominal pain. I began urinating blood which clears up through the day with water consumption. I know this is a rare side effect but was wondering if any other ipi users experienced this during or after the ipi treatments? I see my onco on Wed and will tell him but has anyone else experienced this side effect? 

Lee Parlier

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Anonymous's picture
Anonymous
Replies 8
Last reply 8/25/2016 - 10:50pm
Replies by: brewgirl68, Anonymous, Duffy's Mom, Polymath, btcedarr

My doctor told me on June 13/16 that I had melanoma. Stage 1b. I have since had it excised with 1.4cm and 2cm margins on the side and under, respectively. They say it's good news. Now my job is to be sun smart, do regular skin checks and try to figure out how to live my life with melanoma.

I am not a sun worshipper, but do love to be out enjoying activities like gardening, hiking, photography and kiteboarding. The latter is the easiest since I am completely covered in a full wetsuit, booties, gloves and helmet.

Since getting this diagnosis I have been afraid of the sun. I wake up in the morning and my first thought is "what can I wear that is safe and not too hot?"

I am weeks away from retiring. My husband has been patiently waiting for me to do so. We are all set to carry out our long prepared plans to travel in our RV through the southwestern US national parks and open areas. Now I am scared to do what we have worked so long to do. We are looking into having window film put on the RV windows to screen out UVA/UVB rays. Hopefull that will help and give me a safe shade place.

My question is could someone please, please tell me about clothes? I have spent more money on SPF clothing than on clothing in years.  Does everything have to be rated SPF 50+ to protect me? Plus, where can you buy SPF clothes besides on line?  Does anyone know if the Sunguard Laundry additive really works?

There must be a way to do this, but I don't feel at all confident about how. I don't want to make mistakes, due to my ignorance that will cost me my life. Any help will be deeply appreciated.

 

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laulamb's picture
Replies 7
Last reply 8/17/2016 - 3:42pm

Hello,

I am Stage 3a and did not qualify for S1405 (ipi/interferon arm vs pembrolizumab arm) because I only had 1 sentinal lymph node positive and not 2.  Dr. Kirkwood at Hillman Cancer Center recommended interferon as a treatment option.  I declined and got a 2nd opinion with Dr. Schucter in Philadelphia.  She recommended no treatment because my original melanoma was superficial spreading, 1.3 mm, clark III and Mitosis rate = 0-1/mm2.  She said I was low risk.  She asked me how I felt about that and I told her I understood what she was saying but I was looking for a treatment option.  She sent pre-authorization to my insurance company for ipilimumab at 3mg rather than the 10 mg and I had my first treatment two weeks ago.

Questions are:  How will I know if I am a responder to ipilimumab?  And will ipilimumab work on BRAF negative melanomas?

Thanks in advance!

Laura

 

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ecc26's picture
Replies 20
Last reply 8/25/2016 - 12:07pm

got back from the oncologist this morning and he confirmed my suspicions that the Ipi/pd-1 combo is not working. now what? there was talk about chemo and hospice and we set another apt for Wed so I could have time to make a decision. I've just finished looking the cliicaltrials.gov listiing and don't see anything for me.

I need help and any suggestions are welcome

-Eva

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/15/2016 - 6:26pm
Replies by: Anonymous, Brice311

Here's the Mole

 

https://imageshack.us/i/pozbaHfZp

 

 

No idea how long it's been there It's under 4mm I think. The problem I have is I can't afford to shell out for s Biopsy without sacrifice so please looking at the mole is it safe to watch and wait? Or because it's new should I remove it?

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/14/2016 - 6:02am
Replies by: stars
JoshF's picture
Replies 32
Last reply 8/19/2016 - 10:31pm

I've been through a lot recently and ended up in ER this afternoon. Just feeling lousy and got nauseous. Long story short, CT scan showed 8mm hypodense lesion in left frontal lobe. I had no idea, not a symptom. Waiting to do MRI now and hopefully act fast with treatment course next week. I'm devastated guys... but based off earlier posts I'll take it day by day. I need to enjoy my wife and kids. Everything happens for a reason. 

My onc emailed me and said gamma or cyber knife. Kyle, Matt...thoughts? I'm bummed because I'm fairly certain this delays trial at MDA. This hurts...but fight on, we can beat this! I know many of you have...share or give advice please.

Josh

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

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Jubes's picture
Replies 4
Last reply 8/15/2016 - 1:49am
Replies by: Jubes, landlover, Bubbles

Hi all

i have not posted for a while as (fortunately) not much has changed 

however my 2 yr anniversary of stage 4 diagnosis had just past and I have gone back to work and so happy

if it helps anyone, pembro did the trick for me

i did 9 months worth but had terrible inflammation through my whole body so I couldn't move so I had to stop

as the tumour in my lung had shrunk down from 9 to 3 cm stable the doctors were happy to stop. We tried various drug combos for the ankylosis spondolytis symptoms but nothing worked until I started infliximab (remicade) in April. I have done a course of 4 infusions and have almost weaned off steroids now. Now we will decide if it is worth doing the maintenance doses but either way I am functioning fine for now and so very happy and grateful to all of you Celeste, Ed mat josh and not forgetting dear Artie 

anne-Louise 

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Shaneswife's picture
Replies 7
Last reply 8/14/2016 - 12:47pm

Hello,

I hope you are all winning your battles against melanoma. My husband is having a lymphadenectomy on Monday. It was supposed to be only the superficial nodes but the CT scan yesterday showed that all of the deep nodes are enlarged quite big so they have decided to remove those as well. Has anyone here had their deep nodes affected? How was the surgery and recovery? Did you stay in the hospital over night? He used to be stage 2b but now with this news hes stage 3c.

Thanks

Janis

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Coach337's picture
Replies 1
Last reply 8/13/2016 - 1:10pm
Replies by: jpg

Anyone have a success story?  

Diagnosed in November 2015.  Originated from a mole on my inner thigh/knee area.  Since then:

1. excision

2. sentinel node biopsy (positive)

3. partial inguinal lymphadenectomy (all negative)

4. Yervoy (discontinued after 1 infusion due to uncontrollable side effects)

5. recurrence of tumors in the thigh/knee

6. TIL harvest

7. admission into clinical trial @ MD Anderson

8. several months of T-Vec injections

 

Found out a few days ago after an ultrasound that the tumors are spreading and increasing in size (and returned to the groin), so they are removing me from the clinical trial.  Brain MRI & chest/abdominal/pelvic CT in the next few days, then the "team" will recommend a new course of action.

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LizaC's picture
Replies 14
Last reply 8/15/2016 - 9:47pm

Hi
My partner is on day 4 of her first ipilimumab treatment. The cancer is progressing aggressively and we pray that the IPI starts kicking in. (She responded to brafi keytruda) why not ipi. .

She went back on brafi for a short time 2 months ago and ct scan showed mixed response. Mainly in the liver, since then shes had internal liver radiation, radiation for bone mets.

We decided to go back on brafi but only the dabrafenib not mekinist due to side effects. Cancer has continued to progress. We spoke to Onco last night and asked about going back on braf full dose. He said no point with dabrafenib as she still got resistance, but I feel that the dose wasnt enough.. he suggested continue with Ipilimumab and we could bring in mekinist. Does anyone know much about how these 2 drugs are together?, I can find anything on the net.

Things are getting very desperate now.
Regards
Liza
(Partner to Melissa)

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Anonymous's picture
Anonymous
Replies 1
Last reply 8/14/2016 - 10:07am
Replies by: Tim--MRF

"Brisk lichenoid tissue reaction with dermal melanin pigment incontinence and focal solitary intradermal melanocytic nest.  The histopathologic features are not entirely specific. The main body of the lesion contains a brisk lichenoid tissue reaction with prominent melanin pigment incontinence into the dermis associated with lymphocytic inflammation. The findings are suggestive  of and favor a lichenoid keratosis.  However, I cannot entirely exclude the possibility of an almost fully regressed melanocytic lesion that is no longer discernible in these sections.  Additionally there is a solitary dermal melanocytic nest in the peripheral most aspect of the biopsy present at one lateral tissue edge.  This nest is present at some distance from the lichenoid tissue reaction and felt to be unrelated and incidental. An incidental solitary nest may be represented or perhaps the edge of an intradermal nevus focally sampled within the excisional tissue. Margins are narrowly free of the lichenoid tissue reaction."

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Anonymous's picture
Anonymous
Replies 4
Last reply 8/13/2016 - 4:27pm
Replies by: geriakt, Beehappy, Polymath

Just curious to see what opinions there are out there.  My husband, stage IV, had 8mm tumor removed almost a year ago, unknown primary.  scans have been clear, Thank God.  12 opdivo treatments that ended in April.  The after effects of the opdivo have been worse now than when he was on it.  Theres been no other growths since the one removed, which is good.  Dr's are keeping a very close eye on him since theres nothing really to measure if the Opdivo is working for him or not.  The last 3 months he's seen his Derm and yesterday she noticed a spot she called pre cancerous on his face.  zapped it and said he would have a blister that would go away in a couple of weeks.  Seemed unconcerned.  Well Im now wondering, is this indicative that the Opdivo is not working or am I overthinking?  Something I am definitely prone to doing. 

I wonder if he should mention this to his onc?  He is scheduled for a PET scan next week too.

Thank you everyone.  You've been my rock. 

 

 

Bin

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