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.

Expand/ Collapse Topic
 
Replies By
View Topic
Mrs.GL's picture
Replies 6
Last reply 7/16/2015 - 12:17pm
Replies by: Mrs.GL, Anonymous, Kim K, jessica_f, Janner

Hello - I am revisiting this site as I am going through a bit of a scare recently and was hoping to get some advise/thoughts, I appreciate the information you all have provided others.

I had a chest x-ray that came back with a small lung nodule. (My original MM diagnosis was 1mm clark level IV, neg SNLB). I insisted on a CT scan, that came back with a 4mm (not from original 3mm) and a 8mm some degree of airspace density may be inflammatory.

I have one PCP that says I have no reason to follow up on this and another that says if it were her she would see a pulomonary Dr just to be sure. Sometimes I feel I am overreacting -  I'm very confused. I have a referral to see a Pulmonary Dr. in Vegas.

Thoughts / advise please?

 

Login or register to post replies.

dfeng's picture
Replies 14
Last reply 8/2/2015 - 5:23am

Saw doctor yesterday. MRI brain clean. CAT for chest founds few very small spots that could not be identified what they are.

 

In my case, average one year left. Let's see how long I can make it. 

 

Three months treatment will start from as early as Thursday, depends on when my insurance company approves it.

 

Had four treatments Kemo 17 years ago, I think I am ready for any side effect.

D. Feng

Login or register to post replies.

Steph001's picture
Replies 2
Last reply 7/16/2015 - 9:51pm
Replies by: Steph001, Janner

I had a biopsy done that came back as melanoma and was sent to MD Anderson. I had my wide local excision today. Today I was also given a report that the MDA pathologist did on the original biopsy. It differs just a bit from the report that the first pathologist did. Is this common? The Breslow depth and Clark levels are the same but they differ on mitosis, ulceration, vertical growth, radial growth, and tumor infiltrating lymphocytes. As far as I can tell these things don't make the diagnosis worse, is that right? 

Login or register to post replies.

Rita and Charles's picture
Replies 11
Last reply 7/16/2015 - 3:05pm

HI All, 

It's like Christmas [ well sort of if you had a very grim Christmas] and we received Charles' medication.  Can anyone that takes this combo/ or has taken it share if you took it on an empty stomach or after eating for best "feel good" life??  

Does if make your tummy super upset?

Thanks - any comments are helpful!  

Good news, our first 5 months we got covered by a patient access $ pool - super nice gal at the pharmacy worked with us...........see, like Christmas?

 

Rita

Rita

Login or register to post replies.

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

Login or register to post replies.

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!!!!

Login or register to post replies.

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 :) 

Login or register to post replies.

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.

Login or register to post replies.

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. 

Login or register to post replies.

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

Login or register to post replies.

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

 

 

Login or register to post replies.

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. 

Login or register to post replies.

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. 

Login or register to post replies.

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. 

Login or register to post replies.

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.

Login or register to post replies.

Pages