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 3
Last reply 10/4/2014 - 9:54am
Replies by: kalisama, Teochasse, Anonymous

I am extremely itchy in my groin area and on my hands. I have bad sweats night and day, when I am not sweating I am freezing, constant severe headaches and a dull aching pain in the upper part of my stomach. Just wondering if anyone else has these symptoms also? Wondering if these symptoms are common with melanoma, or maybe it's something else? Thanks in advance for any imput!

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Twistermom3's picture
Replies 1
Last reply 10/4/2014 - 9:43am
Replies by: Janner

So here's where I am. At my regular check up last month I asked my GP about a change in a mole on my face that had developed a small dark spot. She also noticed one on my back and sent me to a dermatologist. The dermatologist stated that there were actually two on my back she thought questionable and she recommended a biopsy on those before removing anything on my face. One was fairly small and she removed the entire mole and the biopsy for that came back as abnormal, not melonoma. The second was larger and she removed only part for biopsy. That one came back as melonoma in situ. I go back next week to have the entire mole removed and to re-evaluate the one on my face. 

I"m not even sure what to ask now. Was it a mistake not to remove the entire larger mole the first time? Too late to change it now, but I don't want to make things worse. If the one on my face also comes back as a melanoma does that mean by definition it has spread?

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lidiapeters's picture
Replies 2
Last reply 10/4/2014 - 12:32am
Replies by: Janner, arthurjedi007

In the beginning of 2013 I went to my doctor with concerns about a pea sized lump on my upper right chest. I had noticed it a few months before and had kept an eye on it as my parents have both had  skin cancer, and my entire family has red hair, fair skin, and countless bad burns over the years. My lump had no colour, but after about 3 months it grew a red coloured like mole on it....my doctor booked me an appointment with a dermatologist. Took a while to get in to see him as we only have 3 dermatologists in our area, anyways as soon as he looked at my lump with his scope, he told me it looked like melanoma and then he froze it, told me I would need to come back for a shave biopsey. A month later he did the shave biopsey and told me to come back in a month for the results. When I went back for my results he told me it was not cancerous but he told me he saved my life that day?? He said he did not get the entire lump and it had to come out because it had the potential to change very quickly so he was sending me to a plastic surgeon for a wide excision.The plastic surgeon's office called me the next day and the day after that I was at the hospital for my wide excision. I asked for a copy of my pathology report, that is when I found this site and posted (My Pathology report word for word, What does it mean? 9/16/2013)

TISSUE SUBMITTED

1 shave/ excisional biopsy, right chest

GROSS DESCRIPTION

SCO one piece of shave/ excisional biopsy tissue from the right chest measuring 0.8 x 0.6 x 0.1cm

the specimen is trisected and all tissue embedded.

MICROSCOPIC DESCRIPTION

Multiple serial sections of the submitted skin biopsy sample have been examined. There is a somewhat asymmetrical 4 to 5 mm diameter melanocytic lesion in the center of the skin surface. Most of the S-100 protein positive nevus cells are seen in the dermis and there is associated marked lymphocytic infiltrate suggesting some degree of regression. A few junctional nests are noted. These are epithelloid cells with larger nuclei and nucleoli. Biopsy findings suggest the so called Spark's nevus (ie, nevus with features of Spitz nevus and Clarks nevus). Considering older age and histological atypia with some dermal nevus cells present at the dermal margin focally, conservative re-excision of the lesional area recommended.

DIAGNOSIS

SHAVE/EXCISIONAL BIOPSY, RIGHT CHEST; ATYPICAL SPITZ NEVUS; CONSERVATIVE RE-EXCISION OF LESIONAL AREA RECOMMENDED

 

. The plastic surgeon told me my lump was childhood melanoma, which he said isn't really melanoma at all and is completely safe. I went back for my second pathology report on my wide excision and he told me the margins were clean and there was nothing to worry about. Which brings me to today... I have another spot which looks like the first lump, but it is smaller, it is a couple inches from the scar of my excision, my doctor has told me to keep an eye on it for change. I have been so sick since just after my wide excision and everything my doctor has been doing for me has not helped and I am wondering if my physical symptoms have anything to do with these lumps? I have low blood count and low iron, I am always cold or sweating, aches and pains, itchy in my groin area and hands that keeps me up at night, constant severe headaches,  I feel like my brain is in a fog just cant think properly and I am so beyond exhausted all the time it is really affecting my daily life.....I am a different person than I was 2 years ago. I am at my wits end and so frustrated. Is it possible I was misdiagnosed? Do clean margins means its over and done with, nothing to worry about? I am 48 years old!! How often is someone my age diagnosed with childhood melanoma? I was recommended to get a second opinion on my first pathology report because of my age but opted to wait on my second report as I had posted just a day before getting those results... that my margins were clean, thought I had nothing to worry about but now am wondering with how I have been feeling for so long? Also in my pathology report where it says 'associated marked lymphocitic infiltrate' Does anyone know what exactly that means?

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Jewel's picture
Replies 3
Last reply 10/4/2014 - 12:17am
Replies by: Janner, Squash, Teochasse

My husband had a clnd in his left groin in 2011. His lastest scan is showing a hot node in his pelvis. If this turns out to be melanoma would that take him from stage 3 to 4? We find out Monday.

Thank you

Jewel

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JoshF's picture
Replies 3
Last reply 10/3/2014 - 8:39pm

So got preliminary scan results...there was some "fuzziness" in right lung but my oncolgist said it wasn't concerning for malignancy as lung nodules don't present themselves in that manner. Not to mention that I was on a Z Pack for sinus related issues last week. I was told that this is not uncommon in what they see in scans because basically you "see everything". Any thoughts?

Still has me nervous but things can always be worse...so I won't complain much. Bloodwork amd everything else was normal...thyroid meds are finally working after ipi took that out last winter. Overall feeling good and praying to remain NED and that many others join the ranks of NED....praying for you all!

 

Josh

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

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Invented by Array BioPharma Inc. and licensed to Novartis in 2010, binimetinib is a small molecule selective inhibitor of the kinases MEK1 and MEK2.  
 

Results from the 117 patient Phase 2 study showed median progression free survival (mPFS) of 3.6 months and objective response rate (ORR) of 14.5%, including one patient who achieved a complete response.  These findings were consistent with previously disclosed interim results at the American Society of Clinical Oncology 2012 annual meeting.  In addition, the median overall survival (mOS) of 12.2 months is encouraging for this patient population, which has a particularly poor prognosis.  NEMO, a global phase 3 trial currently enrolling patients with NRAS mutant melanoma, is designed to measure the difference in PFS between patients treated with binimetinib versus those treated with dacarbazine, a current standard of care.

I'm me, not a statistic. Praying to not be one for years yet.

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Anonymous's picture
Anonymous
Replies 4
Last reply 10/3/2014 - 4:31pm
Replies by: JerryfromFauq, Anonymous, Janner

Ok, this is going to be a long story, and probably confusing. I have been reading on these forums for a couple of weeks and everyone seems so kind and knowledgeable. I don't think my questions can really be answered, I think I just need to let some stuff out and see if anyone has had a similar situation. 

 
A couple of months ago I noticed that I had a swollen lymph node under my left ear. I wasn't too worried about it because I had been really tired and getting dizzy spells so I figured I just had some type of virus. After a couple of weeks it was still there and I was still feeling feeling sleepy I made a drs appt. It had been awhile since I had a general check up so I made an appointment with a new doctor. I go to the gynecologist yearly, but can't remember the last time I went to a gp. 
 
Anyhow, while I was there I showed her a mole on my right forearm that was really odd looking. Over the summer it had developed a black spot. I also showed her a large bump on my left shoulder. She said it was a cyst but did not want to do anything until a dermatologist looked at it. She confirmed that it was a swollen lymph node under my ear but wasn't to worried about it. I also told her about a  fibroadenoma in my left breast that my gynecologist had found about a year and a half a ago. At the time that my Gyno had found the lump I was also having clear nipple discharge. So my Gyno sent me for diagnostic ultrasound and mammogram and had bloodwork to check my prolactin levels. My prolactin levels came back normal. They said the lump was a fibroadenoma and that the discharge was physiological. I have had to go to the breast health center twice for them to check for changes and if no more changes at next appt I won't have to go back. I still have the nipple discharge. 
 
After telling my gp about the boob situation she had no idea why my hormone levels weren't checked. So she ordered some bloodwork and referred me to a derm about the mole and cyst. I made an appt for the following week. All of my bloodwork came back normal. 
 
At the dermatologist appt she removed the mole and wanted me to get the cyst removed asap. So they set up an appt for two weeks later for excision. A week later she called back with biopsy results from the mole and it was melanoma in situ. So she set up an appointment for me to get wle on forearm at the same time they removed the cyst. She also had me come in for a full body scan. 
 
So this past Monday I had a full body scan and she removed a suspicious mole from the right side of my face. Then later in the afternoon I had wle and cyst removed. After the cyst was removed I asked to see it. It was huge, about the size of an eyeball and white. They prescribed antibiotics and sent me on my way. The cyst was weird, but I never was worried about it.i noticed it about 8 years ago. It was tiny at first, about the size of a bebe on left shoulder. It ended up growing to about half the size of a golf ball and had a head so my old dr had drained it. It went down and just felt like scar tissue. Fast forward to this summer, it came back but was under the skin and solid. 
 
So now I am waiting on lab results from biopsy on right side of face, wle on right forearm and cyst on left shoulder. I thought maybe the antibiotics would have made the lymph node better if it was from a virus, but it still there and rock solid.
 
I wasn't too worried until last night. I woke up with a feeling of dread that the mole, the cyst, the lump in breast and the swollen lymph node are all related. I know worrying won't change the outcome of anything, but I am really curious if it is possible for all of these things to be related. The mole was just melanoma in situ, but is it possible for it to spread? I am hoping to hear from my dr today, but I know it will be a good chance that I won't hear a thing till Monday. I hope I am just a lumpy person! 

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JoshF's picture
Replies 6
Last reply 10/3/2014 - 2:32pm

Well hard to believe it been just over a year since I had recurrence and went to Stage 4. After doing Ipi last Oct- Dec and HD IL-2 in Jan, if this scan comes back clean it'll give me about 7 months of NED. Can you tell I'm nervous? Haven't been able to sleep......only 5 1/2 hours to scan time!!!!

 

Josh

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

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I will do my best to make a very long story short. 

I have Melanoma and recently had yet another scare (I had, what I am hoping to have been, a lipoma removed from my back last week - still waiting on path results).  My husband felt the mass on Labor day, it was about 3-4cm in diameter and about an inch or so under my scar from my primary.  Any lump, bump or mass on us people with Melanoma is completely terrifying for obvious reasons.  So, needless to say, this month has basically been mentally hell.

Now a little bit about my husband.  He has low testosterone and gets bi-weekly injections to combat this.  With these injections comes a crazy sex drive.  Let’s connect the dots…

Since my diagnosis a year and a half ago I have not been as ‘frisky’ as I was.  We are married – been together for 10 years – our sex life isn’t what it was like during the first 3 years together.  The most unfortunate side effect from Melanoma has been the constant fear of that nasty beast coming back and as I am sure all of you are aware, that thought never travels too far from view. 

I am already emotionally shut off (which is why I tend to write my feelings – this is why my blog has helped me through this whole shit-show).  I like to joke that I am a phenomenal ‘wall builder’ and essentially use that as a defense mechanism.  During times when I am freaked out about one thing or the other, I close right up like a clam.  Sex can be so far from my thought process – and half the time my husband has been drinking and that doesn’t help the situation either.  We’ve been fighting quite a bit lately about this…our fights can be nasty and he tends to throw out the “D” word (divorce).  It’s exhausting and frustrating and I just wish it would stop.  But just simply wanting it to stop doesn’t “turn me on” – especially when we’re in the middle of one of these nasty arguments. 

My question is how to help this?!  Have you dealt with this and how? 

~(lack of sex)ually frustrated  

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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I will do my best to make a very long story short. 

I have Melanoma and recently had yet another scare (I had, what I am hoping to have been, a lipoma removed from my back last week - still waiting on path results).  My husband felt the mass on Labor day, it was about 3-4cm in diameter and about an inch or so under my scar from my primary.  Any lump, bump or mass on us people with Melanoma is completely terrifying for obvious reasons.  So, needless to say, this month has basically been mentally hell.

Now a little bit about my husband.  He has low testosterone and gets bi-weekly injections to combat this.  With these injections comes a crazy sex drive.  Let’s connect the dots…

Since my diagnosis a year and a half ago I have not been as ‘frisky’ as I was.  We are married – been together for 10 years – our sex life isn’t what it was like during the first 3 years together.  The most unfortunate side effect from Melanoma has been the constant fear of that nasty beast coming back and as I am sure all of you are aware, that thought never travels too far from view. 

I am already emotionally shut off (which is why I tend to write my feelings – this is why my blog has helped me through this whole shit-show).  I like to joke that I am a phenomenal ‘wall builder’ and essentially use that as a defense mechanism.  During times when I am freaked out about one thing or the other, I close right up like a clam.  Sex can be so far from my thought process – and half the time my husband has been drinking and that doesn’t help the situation either.  We’ve been fighting quite a bit lately about this…our fights can be nasty and he tends to throw out the “D” word (divorce).  It’s exhausting and frustrating and I just wish it would stop.  But just simply wanting it to stop doesn’t “turn me on” – especially when we’re in the middle of one of these nasty arguments. 

My question is how to help this?!  Have you dealt with this and how? 

~(lack of sex)ually frustrated  

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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oldblue's picture
Replies 7
Last reply 10/3/2014 - 12:33pm
Replies by: Ginger8888, Squash, DZnDef, oldblue, ecc26, Anonymous

 

Hi all,

I recently read the avemar research and was surprised that most of it was never followed up with larger studies or trials over longer time in the west. Most fowhat I read came from Russia or Hungary. Maybe there is more research but I haven't found it.

I'm also awareof a clinical trial currently recruiting for high dose vitamin D supplements for those at stage 3 - at least it is in Australia.

Is anyone aware of any other alternative options out there? I am interested in it as an adjunct to more formal treatment regimens as long as it doesn't interfere with them.

Or,is there a website that has them?

Thank you,

Nigel.

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adriana cooper's picture
Replies 2
Last reply 10/3/2014 - 11:01am

I go in for my scans on Oct 6th I will find out the next day what the results are. I do love Seattle Cancer Care. I will be 16 weeks out from my first IPI infusion, only made it thru 3 infusions. My body attacked itself more or less, extreme pain and joint swelling walking with a cane for a short time, and every symptom that came with IPI I got. With the help from my rheumatologist who has put me back on prednisone, I know its not the preferred medicine, but as of now I am not in pain. I will soon find out if my lung mets are still there. The recurrence in my arm is still making it presence known. I hate the hurry up and wait game but that all we do when we have cancer. But thanks to my wonderful boyfriend who is always there for me I am holding strong at stage 4 and I will win this battle. Good luck to all of you.

Adriana

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Anonymous's picture
Replies 1
Last reply 10/3/2014 - 12:32am
Replies by: JerryfromFauq

I have been told that all malignant melanoma tissue sent for biopsey contain s-100 protein, and that almost all non melanoma tissue does not. Is this true?

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Kerrid74's picture
Replies 4
Last reply 10/2/2014 - 4:12pm
Replies by: Kerrid74, hbecker, DZnDef, Janner

I just got a call that the wide excision of my right upper arm and sentinel node biopsy came back clear.  Which is good.  But I still feel like I'm holding my breathe.   I know this cancer is vigilant and always wants a way back in, and I will be just as determined in my follow ups.  But after all that I've been reading there are so many stories that begin like mine, all clear and then boom,6 months or 6years later one little guy got away and now it's stage IV.  Be honest- should I be demanding a scan or blood work or anything that might help in just a tiny way to secure my mind that we really did do everything we should have?  The lesion was considered "not thick" at .9mm in thickness and a mitotic rate of <0 with no ulceration. But deep enough to warrant snb. 

thank u everybody and may the force be with u.  The strength ppeople exhibit on this site is  overwhelming.  

Kerri

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