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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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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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.

 

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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)

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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

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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 

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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!

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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!

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Mat's picture
Replies 14
Last reply 8/16/2016 - 12:11am

Well, it's been more than a thousand days (3 years) since my stage IV diagnosis with a heavy tumor burden.  My diagnosis came somewhat out of the blue (I didn't recognize the few symptoms I had) after being stage I ten years earlier.  Trust me, at diagnosis, no medical professional said to me--"don't worry, you have at least 3 great years left."  I've had (and may still have) multiple liver tumors and I've had 3 brain tumors.  If you read this forum and other sources, you know that those can be signs of a poor prognosis.  

Who knows what the future holds?  I take it one day at a time (or try to).  On this day, I'm happy to say that I have another set of stable scans under my belt since starting ipi-nivo in January.  I feel very fortunate to be where I'm at.  I don't assume for a minute that I have this thing beat.  Rather, I assume the opposite--my resilient melanoma cells will continue their Darwinian battle for survival.  I only hope that by the grace of our maker and highly competent medical professionals (together with some randomness and luck), I'll be able to continue my personal fight for survival and have the opportunity to continue to raise my kids, be with my wife and family, work and otherwise live life and pursue well-being.

Josh, Brian and Eva (and others, including Paul and Jamie), I've read your recent posts.  I feel your anxiety and frustration.  As you know, while not everyone has success stories, there are many folks that do (including those who have had success following multiple challenges).  I hope that you're able to move past your present challenges as quickly (and with the least amount of difficulty) as possible and that your stories are success stories.

Lastly, I've seen a few posts asking about whether ipi-nivo can work if you've otherwise failed ipi and/or PD-1.  While there is no clinical trial data on this, the answer is "yes".  (I failed both individually.)  I don't know if will work long-term, but I can tell you that it can work for at least 7 months.  I hope to be able to report back that it will continue to work for another 1,000 days--one day at a time.

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JoshF's picture
Replies 22
Last reply 8/13/2016 - 7:26pm

So I'm just going to reiterate how sick & tired I am of this crap. To give a quick update...a few posts ago I mentioned tiny bump on scalp. Derm thought probably a hair follicle. Well of course not...it was "the crap" again. Now I'm in full panic mode because I really have to question if the ipi is working. I know in many cases it takes time and their is progression. I'm just distraught...I need things to start going in my favor. I wonder if I'll even make it to the infusion date...what else could go wrong? I just need a break from it all...

Be well everyone, I pray for nothing but the best for all of you!

 Josh

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

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Amanda's picture
Replies 1
Last reply 8/11/2016 - 7:54pm
Replies by: landlover

Hello all, I havnt been on the site in forever it seems. Most might not know my boyfriend Randys journey, but I'm sure someone will remember us.

Randy has been getting pembrolizumab, or keytruda as they call it now for 3 1/2 years and counting. He's had his ups and downs but had a good response then stable disease thereafter. He's had many multiple hospital stays from pnumonia turned septic, but recovered. A tumor in his lower lung is blocking the lowest part of the lung so he gets pnumonia easily.

He has to take pills everyday because his adrenal gland failed from the treatment.

After his recent pnumonia/sepsis episode where he was unconcious for 3 days we learned 2 new Mets were in his right and left thigh respectively with all other tumors slightly smaller or stable. They did a biopsy on one of the thigh tumors I assume to test for mutations etc. On the plus side one tumor on his chest has disappeared and the other on the chest is a bit smaller. He's still receiving the keytruda and this last dose has him feeling sick for a week after infusion. Severe fatigue. He was in bed all day for 4 days and then came out of it by day 7 and is back to feeling good and being really active.

So Dr. Ribas says the good guys and the bad guys are fighting right now. Will know more about biopsy on 2 weeks.

Oh and the side effects he was feeling this week which he didn't really get in the beginning were extreme fatigue hot and cold flashes and sweating. Sleeping a lot but still feeling tired. But a week after infusion he feels good again. Oh yeah nausea and stomach ache too. Couldn't eat. No appetite. But that's all back to normal a week after.

-Amanda-

"Give thanks in all circumstances"

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Mli0709's picture
Replies 12
Last reply 8/12/2016 - 4:30pm

Hi Everyone!

 

I just wanted to give you all an update on my mom after my recent post a couple of weeks ago (doctors gave up on my mom post - if you didnt read it). I just want to thank everyone for the amazing positive feedback I received on my post through MPIP. The advice, encouraging words and resources suggestions really helped me and motivated me to find a solution to my mom's prognosis/insurance issue. I have some good news and bad news.

 

The bad news is that my mom was recently hospitalized due to a pleural effussion that the doctors said is due to the malignancy so that means that the cancer is advancing fast. My poor mom had to get 2 thoracentesis and will have to get a permanent catheter placed in next week. If any of you have any experience with this process and have some advice on how to better manage the symptoms/catheter related issues, please let me know. They repeated a head CT in the hospital and no signs of new leasions in the brain (thank God for this). The problem is that it has been almost a month since no treatment so this concerns me. Of course the in-house oncologists gave us the same sad story when they came in the room ("I'm sorry there's nothing else that can be done for your mom") but we tried to still remain positive and tried to not let their words bring us down. My mom is doing alot better now compared to this weekend.

 

The GOOD news is that I was able to find a hospital in Dallas (4 hrs away from us) that has a melanoma clinic and accepted my mom despite having no insurance. She will be seen at UT Southwestern in Dallas and the melanoma specialist she will see is Dr. Arthur Frankle. Does anyone have any experience with him? If so I would appreciate it if you shared. I was told he has 35 years of experience in melanoma and he is the head head of UT Southwestern’s Phase 1 clinical trials. Our appointment is set for next week tuesday and although its great news that we were able to find a new doctor for a second opinion I am terrified of what they would say. I am really hoping he has a positive view on the situation and we dont walk out of that appointment with another "I'm sorry, there's nothing we can do" discussion. I am really hoping that he will be able to give us some insight and provide reasonable treatment options. I am also proactively trying to register my mom in Moffitt hospital in Florida (they also have an assistance program for cancer patients and have melanoma clinic/clinical trials) in case Dallas doesnt work out. We have a family member in Florida who told us about the hospital and said many good things about the place.

 

Lastly, I am scheduled to take my NAPLEX (pharmacy licensure examination) next week after the appointment and I am really anxious and nervous that the outcomes of the appointment will affect my performance on my exam. I have been studying very hard and I am still trying to keep a positive attitude and remain focused while I study. I thank God for this group and I am certain that God has directed me in the right direction so far despite the circumstances. At this point  I am placing all my trust in him. Please if you can, send us positive vibes and prayers as we prepare for next week's busy schedule!

 

Thank you everyone!

Maria

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landlover's picture
Replies 6
Last reply 8/11/2016 - 7:27pm
Replies by: landlover, Anonymous, rosa1, MoiraM, jennunicorn

My first CT scans & MRI were in April. I had two small lung nodules at that time & pathological nodes in my neck.  I have since had a nevk dissection and am stage 3c.  I had scans this week in preparation for joining a clinical trial- but got word today that I have something new in my left neck and that one on the nodules has grown from 3mm to 7mm, and that I have one new lung nodule. Now they have ordered a PET. 

What experiences have others had with growing lung nodules?  It seems ominous to me.  Am I about to join the stage 4 folks?  

My daughter is getting married on a week and I don't want to share this news with my family yet. 

Thank you for your input!

Peggy

Stage 3C, primary on neck, neck dissection May 2016.

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Aaron's picture
Replies 6
Last reply 8/12/2016 - 10:34pm
Replies by: KAF, Aaron, slh4448, MoiraM

Well it is what was suspected. My MRI was swollen and I have now been taken off my scheduled treatment plan. I meet with an endocrinologist tomorrow and will get another more detailed MRI. My blood test revealed that my ACTH, TSH, and cortisol levels are very low and I am now on prednisone. Strongly believe I am beating this and that this is all going to mean good things in the end. 

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