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.

Expand/ Collapse Topic
 
Replies By
View Topic
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?

Login or register to post replies.

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!!!!

Login or register to post replies.

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 

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

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)

Login or register to post replies.

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."

Login or register to post replies.

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

Login or register to post replies.

TerisalyT's picture
Replies 7
Last reply 8/20/2016 - 9:32pm

Hi,

I would like opinions on available Trials for Stage IIIa Melanoma as an adjunctive therapy for patients with high risk of reccurence.  I have already had CLND and am considered NED but due to the size of and traits of my original melanoma I have been told that I should continue treatment.  It was suggested that I get involved in a trial and I am looking into a Vaccine Trial with MHP6. 

Has anyone had personal experience with this trial? 

Do you have recomendations for other trials that are open to Stage IIIa as adjuntive therapy after surgery especially around the Washington DC area, VA, MD?

Will studies that I am in today make it difficult for me to get into studies later should I have a recuurence and progress to Stage IV?

I want to thank you in advance for any information.  I was having a crisis over my decision to have the CLND and everyone was very helpful.

 

Login or register to post replies.

jennunicorn's picture
Replies 10
Last reply 8/17/2016 - 3:39pm

I recall reading that some people have developed pneumonitis while on immunotherapy drugs. I have had these symptoms for the past week: deep cough with not a lot of mucus but not totally dry, burning feeling in lungs (like the feeling after a run or heavy exercise), heavy chest, more fatigue than usual.

Wondering if anyone else who has dealt with pneumonitis can tell me if these symptoms sound familiar, or maybe it's just the crappy air quality of california that's doing it. Had pneumonia as a baby, not sure if that makes me more susceptible or not. Emailed my onc, should hear back from her tomorrow, but wanted to get some input from you guys.

Thanks :)

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

Login or register to post replies.

susanspotless's picture
Replies 4
Last reply 8/13/2016 - 6:13pm

 

About 3 weeks ago while showering I noticed a black spot at the base of my big toe. When it wouldnt wash off I tried scraping it off when I got out of the shower, but it didnt budge. I got busy, planning and getting ready for vacation and totally forgot about it.

Then we went on vacation where I got a bad dose of food poisoning on the last day. I am still not 100% but I started trying to scrape off that black spot again and when it still wouldn't move I started looking online.

I have had dozens of moles removed, they were all dysplastic. In Feb. 2009 I had  WLE & SNB for a stage 2A melanoma, ulcerated with a high miotic rate.  Unfortunately the WLE & SNB took place by a surgeon in a hospital AFTER the dermatologist had already excised the mole and then done his own WLE of the area.  I try my best to forget that and have done a darn good job of it for 7 1/2 years!

But now this black spot, sorry for the ugly senior citizen foot (:big toe left foot

It hasn't grown in 3 weeks or so as far as I can tell and doesn't look anything like the photos of melanoma of the nail I have seen online. I have to admit I haven't seen a dermatologist in 3 years but do you think I should start looking for one now?

susanspotless

Login or register to post replies.

KAF's picture
Replies 8
Last reply 8/16/2016 - 12:15pm

hi all

Has anyone lost hair from the ipi/nivo combo?  If so, did it grow back?

Also, my eyebrows, eyelashes and other body hair are turning grey - did this happen to anyone else?

Did 7 weeks of ipi/nivo and had to stop 2 weeks ago due to pituitary inflamation 

Login or register to post replies.

Mtnears's picture
Replies 18
Last reply 9/2/2016 - 7:07pm
Replies by: Mtnears, jennunicorn, Ed Williams, Becky, Fen, Anonymous

First, this community has been great for getting information as we've been learning about the road ahead of us.  Now that we have more information I thought I would post it and get feedback from others!

My wife was recently diagnosed with Melanoma.  49 years old, no family history that we're aware of.  Developed a nodule under a blue mark on her skin that she had forever, decided to have it removed and we found out the results.  

Since then, she has had a PET scan which was negative as well as a WLE and sentinal node which the pathology from that was all negative as well (phew).  Tumor was on her bicep, from a report I have it says:

Tumor thickness 7mm, Clark's level V, Not ulcerated, histology unknown, no evidence of metastasis and Serum LDH elevated.  Classification T4 N0 M0 AJCC Stage IIB.

So, based on that info they want to proceed with Interferon Alpha 2B for 4 weeks at a high dose, 48 weeks at a low dose.  

Doctor said that with a IIB it is debatable on adjunct treatment but that most recommend it, especially with her age and health being good, better to attack hard now.

Any comments / suggestions / expectation setting appreciated.  We have a couple weeks before she will start treatments.

 

Thanks!

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 0

I was diagnosed with Stage 4 metastatic melanoma of unknown orgin in March 2014.  Over the course of two years I've been on interferon, then IL-2, Yervoy and Opvido.  Had some good response with Opvido, but have stopped responding.  I am currently enrolled in clinical study at  Sammons Cancer Cener in Dallas.  This is a genomic study and have been matched with the drug Palbociclib.  This was recently apporved for breast cancer.  Just wondering if anyone has any experience with this drug/study as it pertains to melanoma?  Been on this for 3 wks (3wks on/ 1wk off) and so far side effects are tolerable.  Thanks for any info!

Login or register to post replies.

Pages