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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Julie in SoCal's picture
Replies 7
Last reply 8/22/2016 - 6:25pm

Greetings friends!!

It's been awhile since I've posted anything - mostly because nothing had changed.  I was doing Pembro, (I've done 21 bags) and it was working! Up until now, it has taken care of all of the peskey little in-transit buggers.  It was so cool to watch / feel the little suckers melt and go away.  I figured Pembro was winning the mel battle.  But in this past month I've had another in-transit pop up.  So I don't know what to think. Dang Mel! 

I have scans again on Monday.  It's been 6 months since my last scan, so there' s a possibility of change (also a possibility that there's no change- but somehow that's not in the forefront of my mind). I'll talk with my Rock Star Doc and see what he has to say, but waiting and watching and wondering if I've failed another treatment take some active doing.  

So anyway, this is how it is. I appreciate the comfort and wisdom of the community here.  There's nothing like it.

Shalom,

Julie

Stage 4  (TXN2cM1b)-- 2018 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 ???

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julia80211's picture
Replies 3
Last reply 8/22/2016 - 5:23pm
Replies by: debwray, julia80211

Hello-

I've seen some others post their biospy results so I'm hoping that someone can take a look at mine too.  

 

A little background: A friend of mine passed away from Melanoma last fall.  She asked all her friends to get skin checks, so I did.  I had one mole that had changed but nothing that seemed concerning as it had always been skin color.  Then part of it develped pigment.  Then the pigment formed a dark line in the mole, so I made an appointment.  She drilled how important the "E" is when looking at your moles.  The PCP said "It's probably nothing" but referred me.  The derm thought it was nothing but took the biopsy to put my mind at ease.  Everything came back fine in March.  

Once the biopsy area healed a tiny dark spot showed up and grew rather quickly from a tiny dot to a 3mm spot in the matter of a few weeks.  I was in for something else and the derm saw it and asked so I recounted what happened.  At that point they decided to take a punch biopsy.  

I got a call last Monday.  The derm said that the biospy came back with "severe atypia" and she said the pathologists couldn't decide if it was atypical or melanoma.  So I have a excision scheduled for Sept. 2nd.  From reading other path reports on here, I don't seem to have some of the key measurements though. :( 

I just picked up a copy of the report today to try to put my mind at ease.  The whole "maybe it is, maybe it isn't" made me nervous.  

On the tissue exam part it reads "erthematous papule x 6 hours, reactive erthema vs erthema multiforme vs bullous arthropodB- hyperpigmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

It was reviewed by 2 pathologists.  The first one said "recurrent junctional nevus with architectural disorder and severe cytologic atypica, surgical margin free of involvement."  Sounds good, I think?   The report says thsi person is a pathologist but doesn't specify dermapathologist. Second pathologist (who is specified as a dermapathologist) says: "hyperpitmented 3mm macule in site of previous shave biopsy for nevus, recurrent nevus vs atypical nevus vs melanoma."  

Normally, I wouldn't worry but given how quickly the spot grew at the point of the shave biopsy is making me a little nervous.  Any thoughts? 

 

Thank you!

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Anonymous's picture
Anonymous
Replies 2
Last reply 8/22/2016 - 12:23pm
Replies by: debwray, Anonymous

I recently had an entire mole removed (including the roots) recently.  It was severely atypical.  I don't have any other abnormal moles.  It seems that this was the exception. Does this increase my chance of melanoma?  Also, can the severely abnormal cells come back from the same place?  The derm said he took out a very generous margin.  

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GAngel's picture
Replies 6
Last reply 8/22/2016 - 9:22am
Replies by: Jon M, GAngel, SABKLYN, Casitas1

Hello to all! It has been a while since I have posted here although I do check in from time to time to see how everyone is doing. We have been busy with living life and our biggest struggle has been letting go of the fear of recurrence.  Today Rudy had his 4 month check up and PET/CT scan which revealed that he remains NED! For those of you new to this site you can read my profile for details of my husbands melanoma journey. A quick summary is that he was diagnosed in February 2013 with stage 4 nodular malignant melanoma.  Originating from a mole on his lower left leg with metastases to his liver (15+ tumors) and his left groin lymph node. Treatment started with Zelboraf (which was working but he had severe side effects) and then when the Dabrafinib/Mekinist combo became available he started the combo and eventually began an intermittent dosage schedule and by November of 2013 he showed no evidence of disease.  

Rudy took a 6 month break recently from the combo with no return of disease as the scan today reveals! Amazing! I am compelled to share with you that since the first week following his diagnosis he began taking cannabis oil in the recommended amount to cure cancer and remains to this day taking it at a very low dosage.  That is the only medication/treatment that he has steadily taken since being diagnosed.  I know it was a gamble to go off of the combo and his oncologist did not support him doing it but it was something he felt he had to do. I think mainly it was for two reasons the first being a quality of life issue and the second being he wanted to know what role, if any, the oil played in his success at beating melanoma thus far. We realize that there is no science to his study so to speak (most would say only stupidity, lol) but he was told that if he were to stop taking the combo that melanoma would come back immediately and with a vengeance.  Is six months enough time to give it to come back? According to his doctor for most people the answer is yes. Rudy is not like most people according to his oncologist.

I should also note that Rudy's oncologist was very leery of the cannabis oil and its effect on cancer in the beginning of his treatment, however, at every appointment he and I shared information on latest treatments which included cannabis oil and he now advises me that a huge percentage of his patients are taking the oil as additional treatment to conventional treatment.  I believe that one day soon there will be clinical trials being done in all major cancer centers on cannabis oil as a cancer treatment as the positive results of it curing cancer can no longer be denied and his doctor now agrees with that sentiment. Go figure! I have no reason to give false hope to anyone and I just want to give you good information and maybe some hope because it  worked for my husband.  It may not work for everyone but it is worth trying as there are no toxic side effects at all and it can be taken in conjunction with most conventional treatments. My best advice is to be open minded and combine both conventional and alternative treatments along with a fighting spirit, full of hope and lots of love, and most importantly to us is faith in a higher power and knowing that our God is in control of it all.  Good luck to you all on your journey and know that I pray for you all! Blessings!

Gina (wife to Rudy, melanoma warrior winning the battle)

 

"Don't worry about anything; instead, pray about everything. Tell God what you need, and thank Him for all He has done."- Philippians 4:6

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Anonymous's picture
Anonymous
Replies 0

Thermolysin is a thermostable neutral metalloproteinase enzyme produced by the Gram-positive bacteria Bacillus thermoproteolyticus. It requires one zinc ion for enzyme activity and four calcium ions for structural stability. Thermolysin specifically catalyzes the hydrolysis of peptide bonds containing hydrophobic amino acids. However thermolysin is also widely used for peptide bond formation through the reverse reaction of hydrolysis. Thermolysin is the most stable member of a family of metalloproteinases produced by various Bacillus species. These enzymes are also termed 'neutral' proteinases or thermolysin-like proteinases (TLPs).

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btcedarr's picture
Replies 8
Last reply 8/20/2016 - 10:37pm
Replies by: Jacklyn, btcedarr, Janner, Alce123, Anonymous, Bubbles

Someone mentioned that Janner has a forum for these stages, but I can't find it. Can someone post the link?

Thanks

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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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Ajwells's picture
Replies 3
Last reply 8/20/2016 - 9:20pm

Sorry for the TMI, first of all. I'm not all about talking about my poop

i had my 2nd ipi treatment yesterday. I woke up in the middle of the night with some abdominal cramping. I drank some pepto and went back to bed. This morning after another couple bouts of cramping, I had a mainly normal BM, but there was some mucus in it. Now I had another moment of cramping with the feeling of urgency, but I got nothing but a tiny bit of mucus. My doc said to call if I have more than 3 loose stools in 24 hours. I was just wondering if there is anything I can do to prevent this from turning in to something serious?  I take a probiotic every morning. But I'm afraid of taking too much pepto or Imodium because I have IBS with constipation. Do I risk the constipation to avoid the diarrhea?  Or just bite the bullet and call my nurse and give her a forewarning? 

Thanks for any advise. 

27 year old mother of three. Diagnosis stage 3a with the primary on my scalp. Currently receiving Ipilimumab as adjuvant treatment. 

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Mtnears's picture
Replies 17
Last reply 8/20/2016 - 11:38am
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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Patina's picture
Replies 6
Last reply 8/20/2016 - 8:23am

It's three month shy of 3 years, but my Mom, at 80, just got the approval to get her commercial drivers license back!  She is ecstatic!

Her doctor's all call her a miracle considering the stage and number of brain mets, which totaled 28, including a craniotomy for a recurrence. She has had no cognitive issues and is certainly A-Typical because of her outcomes thus far and her remarkable strength and resilience. - She acts like a 50 or 60 year old and has been dying to get back to driving for a local tour coach company she use to work for. - Staying home or taking it easy it too boring for her!

Hopefully one day everyone will have these results. In the meantime, this gives others in this situation some good news from a Stage IV survivor.

History:

At 77 she was diagnosed with Stage IV and then brain mets, which had been missed!?! She had gamma knife radiation for 8 of 9 brain mets, they missed one !?!, followed by Yervoy 4 days later. She had amazing results, are related to the abscopal effect from gamma knife radiation. However, still had to deal with 17 more brain mets 4 months later with gamma knife treatment again, a reoccurrence about 16 months later which needed a craniotomy and then another brain met 1 month later. She's been on Keytruda for 1 treatment shy of one year, and they can't find any signs of cancer in her brain and most of the remnants from treatment are gone. - Her last CT scan showed 2 or 3 small smudges in internal organs... Everything else is gone and other than the brain mets nothing else has ever shown up.

My Mom is being treated at USC in Los Angeles. Her team has been awesome and I doubt that anyone, but Dr. Eric Chang and his team, could have done a better job with treating her brain mets without any cognitive issues to date. - He was called in 4 months AFTER her first gamma knife treatment because we were told she had 1 new brain met.  We found out that not only had the first team MISSED a brain met, but that she didn't have just 1 new brain met, but at minimum 5 in her prefrontal alone. We had been told to watch and wait by the first team and I can't imagine what would have happened if we had done that. With certainty my Mom would be in the same position now if we had followed those instructions.  - It pays to get second and even third opinions.

 

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Anonymous's picture
Anonymous
Replies 5
Last reply 8/20/2016 - 7:34am
Replies by: debwray, Bubbles, Linny, Anonymous, JuTMSY4

Hello. I had a lymph node disection done on my right groin on Monday. They had to take both the superficial and deep nodes out. I've now developed a case of lymphadema in my scrotum. I want to get compression garments but don't know where to look. I'm in Canada. Also should I see the surgeon about the swelling? I'm not sure there is anything he can do.

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Alestrada88's picture
Replies 2
Last reply 8/20/2016 - 12:54am
Replies by: kylez, jennunicorn

Anyone here familiar with any melanoma doctors? I'm looking for a second (and maybe third) opinion!

Thanks in advance!!!

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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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gaby's picture
Replies 2
Last reply 8/19/2016 - 6:42pm
Replies by: dmturner, mjanssentx

You always gave me their support in difficult times so today I want to share this good news. Today we visited the oncologist with the result of SCAN, and everything is clean !! Thankfully, my husband  is NED since  August 15, 2012

 

We live an  emotional roller coaster. From diagnosis in June 2012  with  melanoma and kidney  cancer my husband had 38 years, everything was very difficult, but he's a fighter, and decided to make interferon for two years. He had several questionable PET and suffer much distress but thank God the beast yet to return ....

 

Greetings and thanks for the support.

 

gaby

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My onc was telling me about this research she was a part of last time I saw her. This article posted yesterday, thought I'd share. Always love to see new research and advancements that will give patients a better idea of how well they might respond to certain treatments.

http://www.ucsf.edu/news/2016/08/403831/immune-cell-population-predicts-...

Off to get a chest CT to see why my lungs have been jerks lately... hopefully just a weird chest cold.

 

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

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