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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RitysMom's picture
Replies 1
Last reply 5/16/2017 - 9:18am
Replies by: Janner

After Kristine's diagnosis last August, I made my other three kids begin seeing dermatologists. My 20 yr old son recently had two moles biopsied. His dr called today and said that one was abnormal...it's not cancerous, but if left it could become cancer. They had done a punch biopsy and didn't get it all, so they are having him come back in to remove the rest.

I know it isn't cancer, but is it possible to request a scan based on the family history? Kristine never had a scan after her primary was removed in 2013 and I can't help but wonder if it would've been caught sooner had she been getting regular scans. 

My oldest daughter also had a mole removed that came back as "changing cells" and they basically said the same thing, that it could become cancer if left alone.

So basically my stress level is way up there. I want to know what we can do to be proactive and hopefully prevent another devastating diagnosis.

Cindy 

Mom of the beautiful Kristine

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mrsaxde's picture
Replies 5
Last reply 5/16/2017 - 7:19am

If you've seen my last few posts you know that my latest scan, a PET done in March, revealed that Keytruda had gotten rid of my lung nodules and my skin spots, while still visible, were no longer active. But I have lymph nodes in my chest that are now positive after being confirmed by biopsy. Plan A was to start radiation, and afterward resume Keytruda.

On Wednesday we shifted to Plan B. I saw Dr. Sharfman at Johns Hopkins. We discussed whether my oncologist should resume Keytruda while I was getting radiation, to try and take advantage of the "synergy" that has been discovered between radiation and immunotherapy. But he also mentioned that he had asked his research nurse to look for trials that I would fit into.

Shortly after we got home Dr. Sharfman called. He offered me a spot in a trial comparing the effectiveness of a new immunotherapy agent, known as "anti-LAG-3" at the moment, when given alone and in combination with Opdivo. He said he thought my prospects were better in the trial than with radiation and Keytruda. So I told him that if that was his recommendation then that is what I would do. Now they're doing that time honored American tradition of waiting for my insurance to clear me, so I can

I was wondering whether anyone else here is participating in this trial, at JHU or elsewhere. If so, what have been your experience with side effects and such? And more importantly, is it working? The nurse I spoke to today told me that Dr. Sharfman recommended this because there have been several melanoma patients who have gotten good results.

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TexMelanomex's picture
Replies 4
Last reply 5/16/2017 - 7:16am
Replies by: raun cesar, Anonymous, Christine.P

Hi guys! Its been awhile and I hope this finds you all kicking some melanoma butt! I'm still healing from the skin graft (I had a setback when the donor site opened WAY up and it was full thickness graft, it was infected so the decision was made not to close it, a 4 inch wide by 1.5 inch thick cut takes a while to heal without sutures!!). The actual graft on my head is still healing but getting close to being done with it (I think). I notice that it is shrinking and what started out about the size of a silver dollar is now about the size of a quarter.

Since the WLE, SNLB, and graft I have been assigned to Dr. Amaria at MDA for medical oncology although at IIc there were only two options: Interferon Alpha (no thanks, and Dr. Amaria concurred) and a trial that I was going to miss due to time since surgery and when the study starts.

The genetic testing has been completed and I am BRAF positive, so if recurrence happens I will be armed with that knowledge (actually MDA will be armed with it).

No real news on this end except I apologize for being away from the boards for so long. I have been living life and trying to enjoy every day. This brief journey definitely made a mark on me (and not just the scars!) so I have been reprioritizing many things in my life to slow them down a little, relax a lot, and just take it all in.

My first round of post-surgery scans (CT and MRI) are in about 3 weeks so I'm hoping for the first all clear of what will be many, many scans over the next several years.

Fight on Warriors!!

Tex

Tex

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messedmelanocytes's picture
Replies 1
Last reply 5/16/2017 - 5:00am
Replies by: Scooby123

Do anyone  know of any connection between HRT and an increased chance of MM? I tried to see what was on the web and there isn't much but what I did find says there is not a proven connection. So, is MM considered not a horomone based cancer?  Has anyone recieved advice against taking HRT if they have had MM?

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matthew111's picture
Replies 13
Last reply 5/15/2017 - 10:32pm
Replies by: Anonymous, matthew111, Jeff_in_FL, AliCat61, GeoTony

Are nodular melanomas raised or are they flat?

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messedmelanocytes's picture
Replies 1
Last reply 5/15/2017 - 10:29pm
Replies by: jennunicorn

I'm wondering if there is risk from UVA UVB rays through the windows in my car. Does anyone know if typcial glass windshields block these harmful rays? Should we be taking precautions when driving? There is also the sunroof glass, so if there is risk, then there is a lot of rays from the sun that can find you while driving, in a busy urban centre, we spend a significant amount of time behind the winshield commuting. 

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matthew111's picture
Replies 9
Last reply 5/15/2017 - 9:58pm

I always thought a dysplastic nevi mole was considered normal, but looking at some things people have said they got a dysplastic nevi mole and had to go back for more excision with margins and it sounded like it was almost as bad as melanoma. My mom had a mole removed that was dysplastic nevi stage 1 and didn't need to go back for more excision. At what stage does it require more excision?

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KatelynAmber's picture
Replies 4
Last reply 5/15/2017 - 3:30pm

Hi there everyone, I have been having some symptoms and was wondering what you guys think. I am a sophomore in college and have not had any previous cancer history. Both of my parents do have many freckles and moles though. I also have multiple moles and freckles on my body. Probably around 50 per arm or so. My first symptom was two moles on my neck raised and were a little itchy. I didn’t know why they were like that so I just picked at them until they were down to their normal size (I know, I shouldn’t have done that). A month to a month and a half later I started bruising very easily. I would wake up and have 4-10 bruises between my arms and legs that I did not know where they came from. Then two moles on my right arm raised and became inflamed a couple weeks ago so I watched them closely. When I touched, them they were more sensitive than my other ones. They were red around the mole too. After two days, mole number one started to have a dark brown spot that covered about 20% of the mole. The two moles then began to form a scab. I made sure not to touch or pick at them but after about 3 days, mole number one was fully a scab and mole number two was about half a scab, and half still the mole. I went to see a doctor on campus and she thought I was just picking at my arm in my sleep (very unlikely) and she picked off the scab. Under the scab was not a mole anymore! It was like the mole just fell off. The doctor then found a mole on my back that was brown but had a black spot in the center. She was concerned about that one more than the ones on my arm. Besides the bruises and the scabbing of the moles, I feel normal. I was wondering what you guys think this could be. Thank you so much for your help!

Katelyn Gallun

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seireland0611's picture
Replies 6
Last reply 5/15/2017 - 11:40am

My mom is stage iv, brain mets (1.8 cm left parietal lobe, 8mm left posterior putamen, and 3 or 4 mm frontal lobe lesion that appeared recently next to the 3cm left frontal lobe lesion she had resected a few weeks ago.

Gamma Knife is on Wednesday the 17th, PET scan on the 22nd, first keytruda is on the 24th. 

We're waiting on BRAF testing though melanoma specialist plans to keep those drugs in his pocket for later if needed, if she's positive for the mutation. 

We don't know where the primary is. She had a PET scan in january after the parietal lesion bled and caused her right sided weakness and unsteady gait. She was taking max daily dose aspirin for unrelated neck issue when the bleed occurred. She hasn't taken aspirin since.

Today we met with her neurosurgeon for post op consult. He seemed to think she's checking out okay. She mentioned that she was again having the right sided weakness (mostly slightly unsteady gait, mild bumping into things, needing concentration for fine motor skills) but not to the extent it was before.

I asked him if it could be that same met bleeding again and he said it's possible.

I'm scared. Could she have some kind of massive hemorrhage and die? I was too scared to ask any more questions I didn't want her to hear the answers to. I know that's not good. 

Last time, to my understanding, the bleeding didn't extend beyond the lesion. I'm hoping this is just a blip. Radiation oncologist and melanoma specialist are super optimistic about gamma knife and keytruda considering that she only has evidence of disease in her brain.

I'm terrified one of these is going to blow and kill her before they can be killed themselves.

I'm terrified this next PET scan is going to show systemic spread. 

I'm terrified gamma knife and immunotherapy won't work.

As a final note, the only two spots that lit up on her first PET scan were a hilar lymph node outside of lung that was biopsied and negative for cancer (it barely even lit up) and a spot in her terminal ileum in her intestines....

Then I find this....

https://www.hindawi.com/journals/crigm/2013/958041/

Reassurances, honesty, anything is appreciated,.. I'm back in panic mode :(

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Happy_girl's picture
Replies 26
Last reply 5/15/2017 - 10:23am

I know this topic has been brought up before.  I have tried to do a lot of research about it on my own. Is there a true correlation between pregnancy and melanoma.  I was diagnosed 6 weeks After giving birth to our first baby.  She will turn 1 in a month. ( hard to believe! :). We are not ready to have another one yet, but I have just been thinking about if it's a reality or not to even think of having another baby.  I went to mskcc for a 3rd opinion.  The dr I saw there, when having more children was brought. Up, said wait about 3 years.  My oncologist at the james center (Ohio state) said wait a year.  I'm just curious what your thoughts and opinions are.  I want to have another one, but also don't want to leave my daughter and husband.  I'm not sure what to think. Help! 

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magnus31's picture
Replies 2
Last reply 5/14/2017 - 12:40pm
Replies by: magnus31, Polymath

Dear all,

I hope you are well despite being affected by melanoma.

I have been stage IV since late 2014 and have been treated with Ipi, Nivo, both in isolation and combination. Now after over two years of successful PD1 treatment, a new lesion was recently discovered in my intestines. Although it was surgically removed a few weeks ago, I am still extremely anxious that I might be developing resistance to PD1 drugs.

Does anyone know how proper resistance is defined? Are we talking any sort of disease progression after a period of PD1-induced response or is the scale of progression taken into account in any way?

Has anyone here had long-term PD1 response despite localized lesions having appeared in the interim? Does my newly discovered lesion confirm first signs of PD1 resistance? The PD1-treated patients making the plateauing survival curve we so often see, do we know if they have been completely without new lesions since treatment started?

My doctor say it's impossible to know where I stand and says I could have next new lesions in two months or in ten years and I just want to believe the latter... Encouraging testimonials much welcomed.

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AliCat61's picture
Replies 2
Last reply 5/13/2017 - 9:21pm
Replies by: RitysMom, betsyl

The good news....Roy was able to get combo Yervoy/Opdivo treatment on Monday. Still no serious side effects .  No fever since his pneumonia was treated. We switched oncologists (same practice, different doctor) and we like this one better. We both prefer a doctor who uses his stethoscope for more than decoration around his neck. We're going to attempt once more to get a port placed to make the treatments easier.  We tried once already, but that's when we found out he had pneumonia, so it was a no go.  The port insertion is scheduled for May 28th.  He is scheduled for his 4th combo treatment on May 29th. 
     The not so good news...We met with a pulmonary about his specialist about his pneumonia/asthma/breathing issues. I don't know what all of this means, but it doesn't sound good.  Quoting from report, "Lungs appear mildly hyperextended with prominent reticulonodular pattern in the mid and lower lung zone. This could represent changes related to chronic interstitial lung disease. Possibility of acute infection or inflammatory process can not be excluded. A less likely consideration would include nodules related to metastatic disease. Chest CT scan recommended to assist in diagnosis. Possibly calcified gallstones,"
     So, next Wednesday, May 17th, CT scan, meeting Friday the !9th to discuss results with pulmonary specialist. We are so blessed that other than the shortness of breath he's feeling okay. The tumor along his jawline (in parotid gland) has shrunk very significantly and can barely be felt.Until they tell us otherwise,  I  choose to believe that if the largest tumor is shrinking then the tiny spot on his lungs should be shrinking as well, and that the current problem with lungs is non-cancer related.   Prayers are much appreciated.

     This is such a roller coaster. I am so grateful that he hasn't experienced any severe side effects and with the tumor visibly shrinking, I want to believe he's going to be ok and be with me for many years to come. But then I get news like this and it literally knocks me to my knees, forcing me to face the fact that despite all of our very best efforts, it may not be ok. I know I have to be strong for him, so please pray for me to, that I can keep up a positive and brave front even when I'm not feeling so positive and brave, It means so much that I can come here to unload and know that y'all understand. Be blessed! I'll post an update after we meet with pulmonary specialist next Friday.

Alison - wife of Roy, Stage IV Metastatic Melanoma

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RitysMom's picture
Replies 3
Last reply 5/13/2017 - 8:36pm

Last Thursday, my daughter met with a radiation oncologist, neurosurgeon, and her melanoma specialist at MDA. All three said her only option was a second round of WBRT. Her first round was 3 weeks in August of 2016. This time they're planning to do 2 weeks. Afterward, they will start her on Keytruda. They also said that gamma knife might be an option in the future, once the number of brain mets is a more manageable number.

The neurosurgeon said that one of the long-term effects of WBRT was memory loss, but that if she's experiencing that 1 or 2 years in the future, we should celebrate that she's still here...that was hard to hear. In spite of that, I truly am hopeful that she will overcome this most recent setback. What I'd like to know is what might we be looking at side-effect wise...is memory loss the worst thing she might experience? I'm not discounting how frustrating that would be for her, but as her mom, I just want her to live.

This is from her MRI

Findings: As noted on the recent prior comparison examination there are multiple hemorrhagic lesions seen within the brain parenchyma. The dominant lesion is seen in the LEFT occipital lobe measuring 32 mm with central necrosis and moderate surrounding vasogenic edema. There is a largely solid lesion seen within the RIGHT single gyrus measuring 19 mm. Minimal additional lesions are identified most of which are smaller in size. A 21 mm cyst seen lobe.

Impression: Rapid development of greater than 20 hemorrhagic intra-axial enhancing lesions associated with mild/moderate vasogenic edema. These are consistent with hemorrhagic metastases.

 

Any insight is appreciated.

 

 

Cindy 

Mom of the beautiful Kristine

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Julie in SoCal's picture
Replies 7
Last reply 5/13/2017 - 7:39pm

Good morning friends!!

Just want to let you know that I'm home from the hospital and Larry the Lung Tumor has been evicted.  

For the most part the VATs lobectomy was straight forward and I had no complications. I had an amazing surgeon and all of the hospital staff were wonderful.

Yes, it hurt.  Especially the first two days. But that's what good drugs are for. And the hospital staff were on top of it.  My pain was well managed.

Yes the chest tube sucks...literally. And while it's in it feels like you've got someone stabbing you in the chest.  But once it's out, everything is easier- breathing, coughing, walking, everything!

So now I'm just waiting for the path results. And of course I hate waiting.  Hoping that this is the end of the lung cancer journey and I can get back to kicking Mel's butt.  She's had it too easy recently.

Thanks! And Shalom to all of you!

Julie

Stage 4  (TXN2cM1b)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, (intransits) 2013 IPI, (intransits) 2014 PEMBRO, (intransits and lung met) 2016 VATs

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Momofjake's picture
Replies 18
Last reply 5/12/2017 - 10:31pm

Hi there,

Just wondering if anyone has heard from Josh? I don't check in too often, but hoping I didn't miss an update. 

Jake is amazing BTW:) He has gained almost 20lbs and is moving out this weekend to take a class or two. It's 20 min down the road, he can still come grab meals...but he feels like his own guy for the first time. He will be 20 in May. He started this almost 3 years ago, so happy to get to see him feel like a real adult and go have some fun! Brain scan May 21 to see if the SRS worked. But he's not worried about it! 

Always praying for all the daily struggles found here. 

Kerri

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