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
Anonymous
Replies 6
Last reply 6/27/2017 - 8:59am
Replies by: Anonymous, Sophietx, stars, Ridingaroundwith27Jennifers

29-year old healthy male. Went to Dermatologist on 6/22/2017 with a lifelong mole (literally on my right thigh my entire life) that had crusted/scabbed over and bled a little bit (I may have been scratching it as I was out in the woods with mosquitoes the day before I noticed the blood). He said it is "more likely than not" melanoma, but would not counsel on what type or depth. Did a punch biopsy and sent to lab. Awaiting Results. Are doctors ever wrong after dermatascope or are they pretty adept at diagnosis w/o biopsy?

 

A few things: there was hair growing in the mole. Is this a good sign? Also, I have a nasty bruise on the inner thigh semi-close to the mole site. Is this dangerous? Thank you for your comments. The waiting game sucks. G-d bless all of you.

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Sam33's picture
Replies 8
Last reply 6/27/2017 - 6:36am

Hi everyone,

10 months after learning one of the sentinel lymph nodes contained micro metastasis of 0.03 mm.(no dissection of lymph nodes) and 14 doses of mono Keytruda (minimal side effects), I had malign melanoma metastasis on one lymph node (positive Pet CT scan and positive fine needle biopsy), yesterday.

What should i do? Two options to choose from my oncologist.

1) To add Yervoy to Keytruda and watch around 2 months if it will work on the lymph node (to understand the effectiveness of combination therapy) and remove the lymph node after 2 months.

2) Make a partial lymph node dissection (2 or 3 levels) of neck and adding Yervoy to Keytruda.  

I appreciate your recommendations..

Best,

Sam  

 

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Replies by: Cwikholm, Janner, SABKLYN

Hello.

My girlfriend recently noticed an odd looking lump on my back that looks very similar to a blood blister.

I have had moderate back acne for quite sometime now (I'm 22) and she will sometimes mess with the acne on my back and squeeze / pop zits that form, and that's when she noticed this lump.

(I know you should never pick at zits, and this recent scare has deeply engrained that now. No more.)

Anyways, about 5 days ago she was over, and didn't notice this blood blister like marking on my back. Which means it had to of formed somewhat recently. And I remember tossing around this morning before waking up for work and feeling pain around the area where the blood blister was found.

But... after over Googling, looking at pictures of my back, and learning what melanoma and NM looks like I have managed to freak myself out completely.

It looks so similar to NM, skin cancer is herditary from what I've read (both my grandfather and mom have it), and I have pale skin, burn easily.

All the symptoms are there from what I can tell, and that's what worries me the most.

Obviously I'm hoping that I've over-hyped a simple blood blister that formed from my girlfriend squeezing something too much, but I can't be entirely too sure yet.

Is it common for a 22 year old male to come down with melanoma?

I have been burned several times, 3 that i can remember that were fairly bad. (Blistering / peeling).

But for that reason, I haven't had much sun exposure or bad burns for about two years or so.

And my next question is, what's next?

Do I schedule an appointment with a dermatologist? Do I go to a GP, ER, cancer center? What do I do?

I'm at a loss, and I'm terrified because from what I've read often times doctors mistake NM for a blood blister. And that's what this looks like, as I've said.

I'm too young to have something like this happen (at least I thought) but my newfound awareness of melanoma has me thinking the worst case scenario may be my reality. I'm now a melanoma expert, by the way. Appreciate it, Google.

Thanks for reading this lengthy, whiny post, and I look forward to hearing from everyone.

Best,

Connor

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RitysMom's picture
Replies 7
Last reply 6/27/2017 - 2:05am

My last post was on 6/8 when we found out Kristine has mets in her spine. The last couple weeks have seemed to fly by while also going in slow motion...it's a very odd feeling. I flew out to her in AL on 6/9, by then she had had a high dose of radiation on one of the tumors in her spine, but still had no functionality from the waist down. Her husband and I spent some time with a home health nurse and learned how to care for her, we then decided to continue with our travel plans.

I had contacted a few drs in the Los Angeles area and Dr. Chang from USC and Dr. Hamid from The Angeles Clinic both wanted to see her. Dr. Hamid was in contact with her dr at MDA, Dr. Tawbi, and said they were both in agreement to get her started on ipi/nivo before we went to Hawaii even tho she's still on 4mg/day of dex.

We flew from Pensacola to LAX on 6/13 and it was a nightmare, Kristine was bruised by the end of the trip after all the transfers by inexperienced employees. We also had a Southwest Airlines pilot who told us that 'life isn't fair' when I complained about yet another indignity that my sweet girl had to endure. I almost got kicked off the plane when I responded to him. Really? We don't know by now that life isn't fair??

After arriving at LAX, we made our way to The Angeles Clinic for an appt with Dr. Hamid. He scheduled her to have her first ipi/nivo treatment that Friday, 6/16. We decided to cancel with Dr. Chang due to how exhausted she was. Dr. Hamid also did a brain MRI and CT of the body. The brain still had numerous brain mets, but she only finished WBRT in 5/24, so we still may see a response to that. Her body had one lesion on the lungs.

Her treatment on 6/16 went smoothly. We flew to Hawaii on 6/20. She has had no improvement in mobility and has deteriorated in some ways. During transfers from wheelchair to car or bed, she sometimes loses consciousness if her head goes back too far. It usually only lasts a few seconds, but yesterday was a long one. My son-in-law called Dr. Hamid and he upped her steroid to 8mg/day. She also seems extremely fatigued, like falling asleep as she's sitting up. And she was vomiting yesterday.

My fear right now is that we're at the end. I'm worried she won't be able to get the 2nd dose of ipi/nivo due to the increase of steroids. 

She's been spending her days here in Hawaii sitting on the back patio watching the waves and embroidering when she's not dozing. She hasn't felt up to going anywhere after the first day. I want to do whatever I can to make this trip enjoyable and memorable for her and the whole family. 

I don't know if I have questions or just need to hear other experiences. I'm just feeling lost.

Cindy 

Mom of the beautiful Kristine

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CindyJ's picture
Replies 2
Last reply 6/26/2017 - 6:43pm

I've read in this forum that a tumor can become bigger before shrinking due to immune system cells attacking during the early stages of immunotheraphy. I'm picturing it as one big blob.

I'm wondering if anyone has heard from a doctor if that too could explain a crazy SUV number of 17 on an approximate 4cm tumor? ...that there's so many cells involved (good and bad) and the battle is why it's so high?

Or am I just hopeful?

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murnaloo's picture
Replies 2
Last reply 6/26/2017 - 5:54pm
Replies by: Anonymous, Janner

Hi all,

This is my first post here, although I have been reading the posts since my Stage 1B diagnosis in April 2016. No other forum has had such kind, practical and authentic posts, in my opinion.

I was just wondering how those of you diagnosed with stage 1 have carried on with your daily lives. How do you balance your diagnosis with sun safety? How do you keep from living like a vampire? How do you live with the fear of another primary or a recurrence? And, what do you do when you get really down about the diagnosis and how it has changed your life?

I was diagnosed with systemic lupus in 1982, when I was 12, so I hardly went in the sun for years. In my late 20s, I did start going in the sun more, as that no longer seemed to trigger my lupus, but I never layed out by the pool or got heavy burns. I lived in Texas, so avoiding the sun is essentially impossible, especially in the heat of summer when you want as little clothes on as possible. But, I hate hot weather, so I am not inclined to seek out the sun even without the lupus factor.

Since 2010, I have lived in London, where we don't see the sun that often, although when we do it is glorious! I had a mole on my right calf that caught my eye - I don't really recall why, but it was enough to make me go to my GP three times to ask about it. Each time I was reassured, including by one doctor who told me the mole was "cute and heartshaped." While I was visiting my parents in the U.S, I went to the dermo, who took one look at it and said it wasn't fine. I had the WLE within a week -- with no health insurance. Ouch.

Because I have lupus, the one thing I did NOT worry about was melanoma. No family history and I've never been a sun worshipper. Given my experience with the British health system, plus my concern that any day now I'll lose the health insurance I got in the U.S. after my diagnosis (it's through the ACA), I feel like a ticking time bomb, and I can't live like this. The short, grey winter days in London used to make me blue, but now my mood dips when the sun comes out.

I thought as time went on I'd get better, but I am getting more scared and anxious. I know we are all different people, but I wondered if you have any tips for dealing. This Saturday is an annual boat trip down the Thames with friends. It used to be the highlight of my summer, but now I'm hoping it rains and the trip gets canceled. I'll be coated in sunscreen, with clothes covering almost every inch, but the joy of the day is gone. This is just no way to go through life.

Thoughts?

 

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adriana cooper's picture
Replies 5
Last reply 6/26/2017 - 5:31pm

I know this post doesn't have anything to offer regarding melanoma treatment but I feel it does offer a window in to a specific area that understandably is not often addressed and surely a place no one want's to be in. Over the past year I have looked for stories such as this as I have tried to prepare myself for what may and has come. Plus I I find this is the only place I have to share the love I  have for Adriana.

 

Things had been going fairly well the last few weeks for Adriana and I, we got her son graduated from high school on June 10 and began our trip to Los Angles area on the 13th with her son, along with her daughter and friend. The trip was full, visiting the beach the first evening. On Wednesday we visited the Hollywood Star Walk, La Brea Tar Pits,  and attended a scene being shot at CBS studio “The Bold and the Beautiful” where my daughter works in the wardrobe department. We met actors John McCook and Thorsten Kaye who were very gracious. Thursday we were at Universal Hollywood most of the day, we went on The Mummy roller coaster  but probably shouldn't have as well as many others. The Simpsons ride was more jolting than the Harry Potter Ride, go figure?  I have to say Universal was much more attentive and accommodating to those with disabilities than Disney, moving Adriana and I and other family when with us to the front of most every ride line and at the front of every photo opportunity (we actually declined much of the time as those folks had waited in line too) and offering us a personal staff assistant as we needed, really quite impressive and appreciated.  Friday was spent at a taping of MTV's Ridiculousness (special thanks to 1iota staff for getting us all in to the audience), Hollywood area and to the Santa Monica Pier. Saturday a bit of sight seeing and to my daughters home. Sunday and Monday were planned (and paid for) at Disney (alas California Adventure was not to be for us, but the kids made it.) Foremost I absolutely made sure Adriana was getting any and all  the rest she wanted and I thought she needed through out the week. We went on a few Disneyland rides and photo-ops from 12-5 when Adriana started not feeling well after a few bites of turkey wrap at a late lunch. I actually think that was a coincidence.  I took her  back to the hotel room and spent that night and the entire next day with nausea and vomiting, even after a few sips of water.  She could not keep any meds down either. She also started exhibiting signs of confusion and memory short term loss and headache. I attributed it to likely fatigue in addition to possible side effects from WBR starting and hoped rest at home would help.  She made it through Tuesday's flight home and in to bed to rest but still not keeping anything down. Her ability to communicate was rapidly declining. Consulting with palliative care over the next day assessing if it is indeed advancement of LMD (had the BRAFi finally stop working) and if she should come in to ER (long wait and to what end) or  call in hospice again. During all of which I had to prepare and find a replacement for a huge job I was supposed to do on Thursday. Both Wednesday and Thursday I had to leave her at home in the care of other family for a few hours. My time caught in traffic was excruciating but she was there each time I returned. Each day she said “Not Today.”

Adriana's communication was now very limited but mid morning on Thursday I asked her if she remembered what an MRI was like and if she wanted me to take her to the hospital, she said no. Lifting a bit of the decision burden off of my shoulders I was now fairly clear on what to do. Hospice was out Thursday afternoon. With some new meds on board Thursday we had her pain under control but things seemed grave. Just after the admit nurse left, Adriana started grabbing me and kissing me and moving about, agitated and putting her feet on me and the like. I called hospice and asked (after being on hold seemingly forever, 3 minutes?) to have someone come back right away, which our awesome nurse did. Adriana had a couple of hours of “terminal agitation” and with more meds, finally calmed down for the rest of the night. At that time she was determined to be in the weeks to days classification at the end of her life as a result of the advancement of this horrible disease. She  had made it past her bucket list milestones and had experienced some exhaustion doing it and her body now was likely ready to be done with this cancer nonsense. It was very difficult night for me. Thursday night Adriana said “Not Today.”

Having made it through the night, I had been up and around early for meds and coffee but had laid back down to rest. Her sister had been here but had just left for the airport to pick up her daughter and mother arriving at 11AM from Ohio. I tried to get up to give more meds but was dizzy and lightheaded (probably stress and exhaustion on my part) and had to phone her sister to come back to assist as I was laying on the floor with nausea at this point. After I got back in to bed, seemingly barely conscious herself, Adriana rolled over and embraced me and rubbed and patted me on the back to comfort me. I was touched and amazed by my incredible wife. I was shortly able to recover out of necessity and get back to caring for her. Friday afternoon still seemingly declining with an increased heart rate but more stable we started the next evening. At one point during her waking times between meds, she continued to badger be to help her to stand. Although this seems it should be a private moment I offer this incredibly touching moment of love between Adriana and I. Remember she is seemingly not mostly lucid and having a restless moment.  I had been in my PJ bottoms with no shirt and had been laying down. She badgered me to help her stand up which I finally obliged. She then removed her shirt so that her skin was touching mine and we laid back down and embraced for a period. She just wanted to feel me against her. Really two of my most treasured moments during my life with her.  Later that night she had a rather restless first half of the night but settled down after her 3:30AM meds. During the next couple hours I noted a racing pulse with shallow and intermittent reparation which the hospice nurse indicated could be an indication that she may be close to the end. In fact on two different occasions I thought she had passed on. Adriana said “Not Today.”

Saturday brought a fair amount of alertness along with some fluid intake and  small amount of soft food. In consult with her I gave some Mek (small pills, easy to swallow) to give her some kind of a chance as doing nothing = 0 and she has always indicated she wants to try reasonable opportunities. Saturdays nurse visit brought news that her heart rate was irregularly low and high  along with intermittent reparation (which can be expected in this state) and that she felt that Adriana was probably now in the days to hours category. Saturday night was peaceful and Adriana said “Not Today.”

Sunday she had quite a bit of energy and has been quite alert, aware and engaging which has been to the delight of visiting relatives which at times numbered 6 in our small bedroom with record 95 degree temps and no AC. I was challenged to manage the group and their energy level in an effort to conserve Adriana's available energy for healing and an effort to not risk sliding backward on her progress. Sadly, although there were offers to “help with anything”, when the time came to change the bed, change her pull-ups, bathe her, brush her teeth or  shift her in the bed all had disappeared or were not to be found. No one has offered to clean the bathroom or do the continuous loads of laundry. No one has offered to learn her medication requirement or what they might feed her. Not her mother or 21 year old daughter that have been staying here. In fact I have had to do a bit of tiding up after the latter. I have to say the visitors today were a bit frustrating for me as when they arrived Adriana was quite alert to the delight of all and I felt that they kind of felt like that the current state was the norm with out a great deal of effort on Adriana's part and mine as a caregiver.  In fact one comment was that “look the bed is made all nice and fresh” without any acknowledgment that it got that way because I had groggily gotten up this morning at 7:30 AM for meds without a lot of sleep and changed it (for the first time with Adriana in the bed) because Adriana's pull-ups had overflowed on to the bed and past the protective pad, even though I had changed them at 3:30 AM and again at 4AM.

This afternoon brought a new nurse that felt Adriana should have an enema  now as it has been a week since her last BM as well as a catheter because she thought her bladder felt firm (although she has been urinating quite regularly, with more volume now and more frequently with her increased intake.) After two unsuccessful attempts at the catheter and a mess on the bed (which again had to be changed #!*<-%$**!!! during a very hot part of the day) as the protective pads were not placed properly, I called it off.  Her ambient O2 was only 69% whereas it increased to 98% when assisted. I am concerned and am sure to not get any false hopes.

Sorry if it seems I am complaining, just frustrated sometimes.

I would do this for a hundred years to keep my wife from pain, and if she has to leave me I would gladly take on that pain to relieve her pain.

BTW again so far today Adriana has said “Not Today.”

Adriana

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Anonymous's picture
Anonymous
Replies 2
Last reply 6/26/2017 - 12:42pm
Replies by: jennunicorn, sgreenberg

hallo Warrios, I need your Help 

My mother tok her first dose of Pembro Last thursday  and since saturday im observing serous disturbances in her behavior as 

Agitation 

confusion 

seeing think that are not really there 

she is desoriented and dont even knoe who she ist

 

sombody hier got the same experiannce on Pembro  or  that could be  the first signs of brain metastases

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smyers5015's picture
Replies 4
Last reply 6/26/2017 - 3:34am

Hi,

I'm a 52yr old male, and In April I was diagnosed with metastatic melanoma, a 5.1cm tumor on one of my adrenal glands and a small 13mm tumor on the right lower lobe of my lung.  They were unable to find the primary.  Last week I received my 2nd cycle of yervoy/opdivo and have few lasting side affects... mostly fatigue but occasionally a fever or sore muscles/joints.  Although I am letting my oncologist suggest the course of action, I know there are things I can do to try and help myself, such as taking the correct vitamins and supplements to help my body fight the tumors.  Currently I'm taking a men's multi, 1000iu D3, Tumeric, and Resveratrol.  Are there any suggestions out there that could/would make this regimine more theraputic?

 

Thanks!

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adrianc's picture
Replies 1
Last reply 6/26/2017 - 3:17am
Replies by: pharmasmruti

Since upon office visits the NP's always keeps track on the medicines and supplements take,I thought it would be useful to post the list of the supplements I am taking on a daily basis:

Turmeric 500 mg

Echinacea 760 mg

Vitaminn D3 3x2000 IU

Vitamin C /preferably from fresh squeezed lemons rather  than the pill formula/

 I know the turmeric's  health benefetis had been discussed  multipletimes  on this forum. Whilst there is no proven scientific evidence it prevents or even cures cancer as implied by studies, it's a powerfull anti-cancerogen  that greatly boosts the  immune system .There was actually conducted  research on the cancer rates in India where turmeric, chilli, corriander,curry,cumin,cinnamon are commonly used in their menu .The research  found that the cancer rates in India are four times less than those in the developed countries.I always try to include these powerful anti-oxidants in my menu when possible,  even though my stomach is sensitive to spices.I thought it was worth mentioning that I have been taking Turmeric every day for the last 7 years.

I hope that helps,

Have a good day everyone

Teodora Chasse

/Reposting due to inadvertenly posting as anonymous the first time,sorry/

 

 

 

 

T.Chasse

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Tabbott's picture
Replies 3
Last reply 6/26/2017 - 3:06am
Replies by: pharmasmruti, Tabbott, Anonymous

Could someone recommend a Melanoma specialist in Alabama? We live near Mobile, Al but willing to travel for the right specialist. I appreciate any information provided. This is all very new to me and my family. Thank you!

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adriana cooper's picture
Replies 2
Last reply 6/26/2017 - 1:05am
Replies by: adriana cooper, Bubbles

There was a post here some time ago (I think) about rectal administration of medication, specifically BRAFi for those who can't swallow. I have unsuccessfully searched. If anyone can find or experience with it, would be appreciated. Also with opening Taf. capsules and mixing in yogurt or the like (just started this with Adriana today as a last chance.) she has been taking some of her meds rectally (oxy, dilauded, dex, topomax) but have gotten some oral replacements.  

Adriana update coming. Obviosly not good.

Thanks, Rob

Adriana

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Anonymous's picture
Anonymous
Replies 5
Last reply 6/25/2017 - 10:39pm

My husband was recently diagnosed with stage IV melanoma which has spread to his Lymph Nodes.  We are still waiting for some additional test which will determine which type of treatment will be suggested.  So far we like the Oncologist just fine and he has a good reputation as a Oncologist/Hematologist.  I'm not sure how much Melanoma he has delt with, he seems knowledgable, but he's not a Melanoma specialists.  How important is that? 

What about getting a second opinion (like on the treatment for example)?  I'm not sure what would be involved since we've already seen him several times and I don't want to waste time before getting started, also not sure if that would be covered by our insurance.  Like I said, I have no reason to believe my husbands Dr. doesn't know what he's doing, it's just with something this serious we want to make the best decision. 

Interested in feedback by others who have been through the beginning steps. 

Thanks so much!

 

 

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Jubes's picture
Replies 4
Last reply 6/25/2017 - 6:35pm

Hi all

i haven't posted for a while. I've been waiting for my next pet on July 4 (no long weekend here)

meanwhile I have a next door neighbour who also has stage 4. He did 2 years of Pembro, had had two new mets since he was on it and 5 months ago had to have the duodenum surgically removed because the new met was between that and his pancreas. He is  just starting to recover from that op. It was traumatic. He is sbout 70. His last ct was clear but he is very thin and naturally he and his wife are thinking what the next plan would be if another met appears. The original was in his media Steinem but he had also had it in his adrenal gland and had that respected too. He's been off pembro since January and has not had too bad side effects. When h gets them they tend to be bad rashes and vitiligo. 

His doctor says he would not put him back on keytruda since he had new mets while on it, so the next step would be chemo which my friend is not keen on. 

Does anyone have any ideas of what the most effective next step would be if not chemo? I know there is the new treatment that Georgina long presented at asco but apparently that has bad side effects. Does anyone know anything about that?

thanks

 

anne-Louise 

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Bubbles's picture
Replies 2
Last reply 6/25/2017 - 3:44am

We're here!  The end of my ASCO review for this year.  I thought it fitting, and important, to end on this note:

http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-friends-in-need-are-friends.html

I wish you all my best.  Until next year....'Thank God and greyhound she's gone!!!!! ' c

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