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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Jennycrn1's picture
Replies 27
Last reply 7/20/2015 - 6:55am

Forgive me--I looked back and didn't see this topic recently so I'm posting and looking for advice. I'm starting Interferon this week (Friday the 17th vs Monday the 20th). I'm looking for advice from anyone that has taken Interferon or is family of the Interferon taker.... How disruptive is it really to the day to day life? What real things can I do if I have bad symptoms to feel better?  What helps? What makes things worse? How soon after dosing would I start feeling bad? Can I drive myself alone back and forth to the appointments so my kids can stay home with a grandma? Should I dose in the mornig or afternoon? Sorry if I sound needy, but I'd like to hear from someone with real experience and not just the doc or nurse from the office with no personal experience. Thanks in advance, Jenny

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JoshF's picture
Replies 4
Last reply 7/16/2015 - 11:42am

I have Pet/CT on Wednesday. I must have forgot it was a Pet. For those familiar with my story, after I had surgery in January to remove the recurrence or whatever was left after ipi and IL-2 they did a Pet which was clear followed by a CT in April that was clear. Just not sure why another Pet so soon. Of course I'll ask. Think I was too excited last time to even think about it and now some serious scanxiety is setting in. As usual trying to rationalize everything going on in my head.

Josh

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

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CC19's picture
Replies 4
Last reply 7/13/2015 - 9:06pm
Replies by: CC19, Janner

Hello...I'm new at this so please bear with me.  I had a shave biopsy done at MSKCC on 6/1/15.  It came back melanoma with margins exceeding biopsy.  The pathology report was very brief and did not contain any other useful information.  I have an appointment on 7/15/15 with a surgeon to discuss path report.  And they have already scheduled my WLE  at the end July.  My question is......can they tell from a shave biopsy that the melanoma is a melanoma in situ ( because a shave biopsy is not deep) or will they biopsy the WLE as well to tell the depth of the melanoma?? 

Thanks :) 

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Anonymous's picture
Replies 5
Last reply 7/30/2015 - 10:11pm
Replies by: amandabren711, AshleyS, Anonymous, Kim K

I was notified about the melanoma July 1st and this process feels like a rollar coaster.  I have not seen the dermatolgoist since I had the biopsy done June 25th and I'm scheduled for more surgery to remove more skin July 23rd and the melanona was/is on the stomach between my breasts and belly button.

1)  Is it normal to wonder if I could have more melanoma other places on my body?  The dermatologist only removed this one mole because it did not look like the others.

2)  Would it be within my rights to ask the dermatologist to remove more moles at that time to rule out anything suspicous?

Unfortunately I will be 36.5 weeks pregnant at the time of the wide local skin removal surgery and there is concern about the dermatologist not being able to close the site afterwards because my stomach is so stretched out.  The OB is concerned about if she opens the inscision during labor or a c-section (I am not planning on a c-section).

The high risk maternal fetal medicine doctor recommends they do NOT do the wide local incision to remove the skin until after the baby is born and he wants me to be induced at 38 weeks (baby is full term at 37 weeks).  However the OB saw the site again and is comfortable with the dermatologist taking the skin out (on the stomach).

The dermatologist told me that the pathology report states that they believe that all of the melanoma came off of me when the biposy was performed.  It was .34mm thick (so pretty thin) and very slow growing.  However, protocol dictates they remove more skin around the site.

Every doctor I have spoken with has stated that there are only a handful of cases where melanoma has passed to the baby, but because they have brought this up so frequently, it has started to freak me out.

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Anonymous's picture
Anonymous
Replies 11
Last reply 7/13/2015 - 6:59pm
Replies by: Anonymous, Janner, casagrayson

Hello Everyone

I'm so desperate emotionally and have no one to talk to so this was the only place I could register and actually have someone listen to what I have to say. The fear of having melanoma is ruining my life. I have started to do poorly in school and have lost all my friends because I have become a depressed mess. 

I have not yet been diagnosed with melanoma but somehow I have convinced myself that I have melanoma. 

This is how it all started. I'm 25 years old male. 

I first noticed this mole 3 years ago when I had a sudden sharp pain on my thigh and looked and noticed a mole there. I'm not sure if I had it before or not. The mole is flat and not raised. The mole sometimes itches and hurts when I press hard on it. It feels like the muscle under the mole is sore. I have convinced myself that I have melanoma but since I have extreme anxiety and fear of cancer I didn't see a dermatologist in the past 3 years but I finally decided to get over my fear and see a dermatologist. My appointment is on August 11th. 

I showed the mole to my family doctor and he said he doesn't feel concerned unless it gets bigger. The mole hasn't really gotten bigger in the past 3 years, if any, the change is very minimal. My mole is 3-3.5mm in diameter and is brown with a black center. No history of melanoma in my family. 

What scares me is the fact that the mole itches, and looks exactly like Google images i find of melanoma. The edges of my mole are not defined. If this is in fact a melanoma what is the latest treatments? I have read some articles about some amazing new treatments but I'm scared the fact that i waited 3 years might have caused it to go deeper into my skin. 

I know this forum is for people who have been diagnosed with melanoma but i just feel so lonely and this is something I can't talk to anyone about because they think I'm fine. My parents, my friends think I'm crazy. I have even seen a psychologist and i'm not getting any better. I'm depressed and have basically locked myself in my room. 

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Anonymous's picture
Replies 4
Last reply 7/15/2015 - 6:11am
Replies by: AshleyS, Janner, Patina

Hey guys. Bad news for my family today. My brother (maternal half-brother, 14 years my senior) found out he has Stage IA melanoma, upper left shoulder, Breslow = .6. He's having a SLNB next week. I told him to ask for a PET as well. Any other tips for him, especially because of my history?

Thanks,

Ashley

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Brendan's picture
Replies 16
Last reply 7/27/2015 - 1:28pm

Hi Everyone,

I have been on PD-1 for about 18 months now.  The melanoma has been behaving as my single,defiant, 5mm met in my left lung has been stable for over a year.  I have recently had a tingling sensation in my left leg and sometimes my left foot seems to be 'heavy' when I walk to the bathroom in the middle of the night (which is all the time!!).  I had a seizure in June and my keppra was upped to 2000 mg/daily.

Anyone experience have a similar sensation?

Thanks!

Brendan

 

 

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Anonymous's picture
Replies 2
Last reply 7/11/2015 - 9:46pm
Replies by: Patina, Anonymous

Friend recently diagnosed w stage 3 , depth is 2.1.   Thankfully PET scan and Ct came back negative earlier this week. Friend is self employed mother w NO INsurance!!

know they are million factors - but trying to get even very rough range of potential surgery costs to remove. 8k?, 40k...?   

 

Fundraising efforts underway but would be helpful to get even generalized idea of what surgery alone will be. And no one will prove.  Again- know million factors...but any guess even is appreciated. Thanks. 

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Friend recently diagnosed w stage 3 , depth is 2.1.   Thankfully PET scan and Ct came back negative earlier this week. Friend is self employed mother w NO INsurance!!

know they are million factors - but trying to get even very rough range of potential surgery costs to remove. 8k?, 40k...?   

 

Fundraising efforts underway but would be helpful to get even generalized idea of what surgery alone will be. And no one will prove.  Again- know million factors...but any guess even is appreciated. Thanks. 

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Friend recently diagnosed w stage 3 , depth is 2.1.   Thankfully PET scan and Ct came back negative earlier this week. Friend is self employed mother w NO INsurance!!

know they are million factors - but trying to get even very rough range of potential surgery costs to remove. 8k?, 40k...?   

 

Fundraising efforts underway but would be helpful to get even generalized idea of what surgery alone will be. And no one will prove.  Again- know million factors...but any guess even is appreciated. Thanks. 

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Kelly---11's picture
Replies 2
Last reply 7/12/2015 - 3:18am
Replies by: Kelly---11, Patina

So I ended up in hospital due to my stomach swelling, we thought this might be due to ippy but they gave me a ct scan and showes I have several new tumors probably 100% more than my ct scan 6 weeks ago, it's hard to no weather ippy has made tumors look bigger due to tcells going around Tumor or I just am not responding at all I still have anothe 2 ippy treatments to take. I'm really scared.

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LisaName's picture
Replies 4
Last reply 7/12/2015 - 5:32am
Replies by: LisaName, Janner

Hey, I have mentioned that you guys here have many God answers, so I hope to hear your opinion on my dx)

i am a girl who leaves in Czech Republic, Europe, but originally I am from Ukraine, so when I decided to remove my mole, I did it in Ukraine. 

My childhood friend there is having the whole family of professors, so her brother(surgeon) removed my mole with radio wave method(surgitron) and they sent it to the pathologist who is my friend's grandfather) 

So the diagnosis from pathologist is following:compound dysplastic nevi, with proliferation of tha pagetoid cells. 1 cm in diameter, removed with healthy tissues.

but also it was sent to immunegistochemical examination which said: tyrosinasa,HMB 45 - bright positive cytoplasmic reaction in the epithel with cells up to basic layer. Negative reaction in the dermal layer.

Ki67 - positive reaction up to basal area in the epithelial layer.

conclusion: morphology and immunefenotype are similar to melanoma evolving from nevi.

 

interesting fact, when path report was read by General oncologists in Ukraine they all said it was melanoma in situ.

but as I live in other country in Europe, I took my report to the DERMATOONCOLOGISTS here in the main hospital, where they also deal with melanoma and my dialog with doctor there was following

- darling, where did u see melanoma in situ dx here?

-in the end.

-as I can see here, it is just dysplastic nevi that tried to evolve, but didn't as it was removed.

 

so for my safety, she went to consultate with doctor who specializes in melanoma, as far as I understood she didn't see anything critical there too.

but of course they did a regular check up for me and sent for WLE(as it is the same thing they do for dysplastic nevi).

my WLE histology was : no atypical,malignant etc cells were found in the sample.

 

Still I was not sure and went to other dermatologist who has experience in dermatooncolgy and now works for private clinic and he said absolutely the same thing

- It is not in situ yet, he sees it as evolving nevi and it was just a call for me to check my skin from time to time.

 

Still it was not enough reassurance for me, so I called professor who did my hystology who said following:

"I didn't mention any formed tumor, what I saw is the spreading of atypical cells. Melanoma is atypical cells, but not all atypical cells are melanoma. If you were not like a grand daughter for me, I would just write dysplastic nevi, but I decided to send for check. Yes, this type of cells could have formed tumor if not removed, or they just would have continue move, without forming a tumor. But instead of guessing we just removed the mole"

 

so so he doesn't seem very worried too.

and I spoke to many doctors here and they say that immune tests are not informative in differing melanoma from severely dysplastic nevi. Melanoma from regular nevi - maybe yes, but not dysplastic.

 

and what is your opinion on that? Many doctors here seem to be sure, that it is not even in situ yet.

i understand that in Central Europe in melanoma center doctors are more experienced that regular oncologists in my small city(who did resection of both breasts to my 17yo friend, when she just had bening fibroma as the biopsy showed), but still I am worried and now checking all my body((.

now I cannot sleep because I think that my lymph node in the neck are enlargdd(the doctor said that they are normal for a person who was often sick in childhood and who had very bad otitis just this winter) and I think this is due to mole(even though it was in my right armpit and I am worried for my lymph nodes next to the left ear).

 

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Anonymous's picture
Anonymous
Replies 2
Last reply 7/11/2015 - 9:57pm
Replies by: DonnaK, Mat

Hello

I hope that this is not inappropriate for this site, but recently there was a story on CBC news about Camp Erin, a camp for children who have had a loss.

In the story, were two children who shared their experience of losing their father to melanoma.  Here is the link for the story.

http://www.cbc.ca/news/canada/camp-erin-blends-play-help-for-grieving-ki...

I am sharing this, as I recently lost my husband, and my children lost their father to this stupid horrible cancer. It was 8 months from the time of diagnosis to the time he died.  We did not have the opportunity to speak to him about dying.  My kids did not have a chance to share their feelings with their father, as the children in this story did, as at no time, despite multiple requests, did the oncologist share his prognosis. My husband was attending appointments and Ipi treatments.  The day after his second ipi treatment he had a brain hemorrhage and died a few weeks later.

Not sure if this is usual for a doctor to not share the prognosis.  All the doctor kept saying when we asked was "as long as it doesn't spread we are good".  We trusted the doctor and thought we were like many others with melanoma that live for years.  I was not prepared for the dark side of melanoma.

I am having a tough time grieving and have many regrets of not researching alternatives and guidance as many of you do here. I just wanted to share this, as if anyone ever unfortunately finds themselves in this horrible spot in their lives, that they advocate for themselves.  We had no idea where our path was leading.  I am thankful for this site and would like to find a way to spread the seriousnes of this cancer so others are aware.  

Does anyone have any suggestions of good organizatons to support in creating a greater awareness of melanoma?  I am a bit synical in my thoughts of  some organizations, with either the mismangement of funds or involvement with pharmaceutical companies at this time.

Again, I am sorry if this was inappropriate to bring here.  The love, support, and hope on this forum is truly incredible.

 

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Replies by: kylez, Patina

My husband Charles' brain mri came back with NO mets!  Yahooo!  After meeting with a melanoma specialist and our oncologist, Charles has opted to start with a BRAF targeted therapy rather than immunology. 

A little background, 15 years ago he was in a horrendous accident - broke most everything, collapsed lungs, spleen out, hip, leg, ribs, shoulder blade - so lucky to be alive.  Broken back pain has haunted him through the years, plus his hip........he lives with pain.  To look at him you wouldn't know - but everything seems to hurt.  

For the past year he has hurt more than ever. now I wonder if that was any warning signs. He also developed these "mystery spots" that no doctor was able to figure out - rash, itchy over his legs, chest, arms - really bad at times and truly his legs - wow!  He had his derm biopsy the spots, we went to a rheumotologist..........no one could figure it out. ANA titer through the roof........what finally helped the spots was prednisone and he has been on and off it for the last 5 months or so.

The past two months have been overwhelming - he is not the normally positive guy, I am that part of the relationsip. He battles with depresson as well as pain. 

So............we start with BRAF + MEK for lung tumor and subcarinal lymph nodes........we opted not to surgically remove all the lymph nodes and the mid lobe.  He wanted to keep off the table as long as he could.  

Strength wise, and because of the spots, we are not doing Nivo first..............

So here we are.  I am terrified that we are making the wrong choice - but who knows?  I read about Keytruda and wonder if that is better than the BRAF + MEK.............but knowing him, the targeted therapy to show some quick results , get his spirits up, make him feel better. 

Its a crap shoot I guess?

If anyone has any good results going with BRAF + MEK - please share. As well as any side effects he might have.........plus how you took the pills. 

Thank you!

Rita

Rita

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kjgregg89's picture
Replies 14
Last reply 7/16/2015 - 8:39am

Hi there and happy Friday! 

My fiance, Dave, was recently diagnosed with stage IV melanoma.  Unfortunately, this is not my first rodeo with this disease, as my stepfather was diagnosed in 2012 with metastatic melanoma as well (he's doing great!  Treated with high dose IL-2 and has been NED for a full year now. Yay!).  Anyways, I am on here almost daily reading posts and sharing your stories with Dave.  He is encouraged by the success stories and finds comfort that he isn't the only one fighting this awful disease (melanoma [and cancer, in general I think!] can make you feel so isolated and alone!).  Thank you all for that - it is so helpful.

Dave wanted me to reach out to see what other people have experienced on Keytruda/Pembro or Opdivo.  He received his first dose of Keytruda on July 1 and has been absolutely exhausted since the infusion.  Prior to his diagnosis, Dave was an extremely active guy - he played baseball, softball, golfed, and went to the gym regularly (he is only 35!).  He of course doesn't have nearly the energy he had before, but he wanted to know if anyone else's oncologists recommended exercising as much as possible while going through treatment or to let his body rest.  I would think that exercise and movement would be helpful for added healing, but wanted to hear what others had to say. :) 

Regarding his other side effects, he's had some migraines (he has multiple small brain lesions and had a craniotomy on June 9) which we have been told are normal and to be expected by his neurologist and oncologists. 

Thanks again to all of you wonderful people for your stories and support!  You make recently diagnosed individuals not feel so lost and alone, and, most importantly, give us hope.  

Best wishes,

Katie 

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