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.

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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"


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Anonymous's picture
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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gemmy32's picture
Replies 3
Last reply 10/4/2014 - 3:43pm

Hello everyone my mother in law has been diagnosed BRAF neg she has a tumour on her right lower lobe still awaiting her treatment. What's does it really mean BRAF negative am I right in thinking it's slow growing cells. Would surgery be the best option as she only has the one tumour an she had the skin cancer 10 years ago. She has been waiting 7 weeks now for her treatment. 


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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!!!!



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

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stayhealthy6's picture
Replies 5
Last reply 10/4/2014 - 9:48pm
Replies by: stayhealthy6, Janner

I had a melanoma removed May 2005 it was .45 Clarks level 2. Recently, my wife discovered a reddish zit like bump on my back on 9/10/14 and slowly but gradually it has decreased in size. Also, about a week ago she squeezed the cyst and white pus came out. Now, I went to the Derm 2 days ago and she said it was just a cyst.

So, as a Stage 1A patient from 2005 should I be worried about this cyst? What should I do? Just wait for the body to take care of the cyst on its own? It has slowly but gradually seem to be getting smaller but again as a Melanoma patient I freak out. Is it a worry or just paranoia?

Any thoughts?



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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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Anonymous's picture
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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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.


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ENaggle29's picture
Replies 15
Last reply 10/13/2014 - 3:33pm

First off, researching something when you get diagnosed is not the way to handle things, but unfortunately, it is what I am having to do.  This is going to be my first post, and probably my most frightening, not because I found out I have Melanoma, but because I know NOTHING about what I am about to embark on.  Sure, I've heard all about it, been scared about it, but always had this "never will it happen to me" idea stuck in my head.  But, here I am, writing about it because it is true.  Regardless on how I want to think.

My derm is having me go to the oncologist for treatment and finding the stage.  I have been having moles removed most of my life.  This last time I went, I only had one removed from my right, middle back, and was going to have more removed later during a surgery (it was scheduled for Tuesday of next week).  That has since been cancelled and they are wanting the oncologist to take care of further removal along with plastics.  

This is all forgein to me.  I have read through a lot of posts, but most of the new diagnosis seem to have a few answers.  Me..I have none.  The diagnosis came from left field.  I am not even sure of what questions I should ask.  Shoudl I call and try to get my appointment moved up to stop the madness going on in my head?  What do all of these words mean?  What will my treatment be like?  

What kind of assistance can any of you help with?  Where should I start?

Thank you all for listening to my rant and help!  I appreciate it!

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RJoeyB's picture
Replies 6
Last reply 10/7/2014 - 3:12pm

As scheduled, I had my brain MRI on Monday, and while the images weren't pretty, frankly, they weren't surprising given the symptoms I've had.  As far as my left-side motor control issues, there has been some additional improvement since my last post with the reintroduction of the dexamethasone steroid.  Nothing dramatic, but I can move my ankle and toes a little more and my arm, hand, and fingers are becoming a bit more stable and functional again.  I'm still using a quad cane and need assistance with some trivial tasks (like parts of getting dressed), but again, have seen some improvement.  My wife continues to be helpful and patient with me despite my steroid-induced deteriorating attitude ;-) — speaking of which, the now familiar irritability, jitteriness, fatigue, sleep disturbances, and fat deposits from the steroid are all returning, too.

The MRI images showed a significant increase in the area of cerebral edema (swelling) over both my June and July scans.  It had improved from June to July with the steroid, so rather than continue to improve on its own as the steroid was tapered, the radiation necrosis and accompanying edema both worsened.  My wife was pretty upset seeing it, but as I said, I wasn't surprised myself — there was no way it was going to look better radiologically with the symptoms as bad as they've been.  The central area of necrosis itself was larger than I expected, but according to both the radiologist who read the scan and my radiation oncologist, it still appears consistent with necrosis and not tumor.  
The question remains about what to do next.  The common approach that I've written about before is to play the game of trying to manage the symptoms with the steroids, which won't treat the underlying necrosis, while waiting for the necrosis to resolve on its own, which often happens but not always.  The downside is the possibility that this could go on for a year or more of going up and down on steroids, which isn't good for anyone, especially a Stage IV melanoma patient who has had some benefit from multiple immunotherapies and doesn't want anything suppressing that "amped up" immune system.
On the unexpected side, my radiation oncologist is leaning towards using Avastin (bevacizumab) to treat the RN.  Back when this started in June, she briefly mentioned Avastin as a possibility that we might consider down the road.  There are some small studies that have been conducted in the past five years or so that show pretty good results treating RN, regardless of the original tumor type, because this use really has little to do with treating cancer.  Rather, just as it can restrict the growth and permeability of blood vessels (angiogenesis) needed for tumor growth, Avastin can use this same effect on necrosis tissue in the brain.  While there are some newer trials using Avastin in combination with other agents to treat melanoma, it hasn't been shown to be very effective with melanoma as a single agent.  But again, this has almost zero to do with melanoma and is about treating radiation injury to healthy margin tissue.  An upside is that rather than just manage the edema symptoms, if it works as hoped, it should treat the underlying cause of those symptoms, i.e. the necrosis itself.
There is still some coordination and consultation to do over the next couple of weeks before we officially decide to proceed this direction.  First up, I have an appointment with my neurosurgeon next week for him to see me and for him to weigh in, then he, my radiation oncologist, and medical oncologist will all talk and hopefully come to consensus.  Surgery is a possibility, but as far as we know, no one thinks we're at that point yet.  Ultimately, if we do the Avastin, it will be my medical oncologist who will need to order and manage the treatment delivery — for RN, the study protocols have typically given four IV infusions, each three weeks apart (same schedule as ipi).  I also have my next regularly scheduled full-body PET/CT in two weeks, so we want to get through that before deciding to do anything else, on the chance that the PET discovers anything new elsewhere that would contraindicate either Avastin or continued dexamethasone.  They may also be able to do a computer image fusion of the brain portion of the PET and the MRI to provide a little more insight into the necrosis itself; it's not typically all that useful, but since they'll have them both, it's worth a look.  We're of course praying that the PET comes back otherwise clear, but are too experienced at this now to not be prepared for a surprise.  In the meantime, I'll continue on this current dose of dexamethasone and hopefully see some additional improvement, and I have both OT and PT starting up to help keep me functional and operating a little better through this.
Thanks for reading and if anyone out there has any experience with Avastin as treatment for symptomatic radiation necrosis, I'd love to hear about it.

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 An Invitation to Witness the Regression of a Stage IV Melanoma (a cure?)

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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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.  


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Eileen L's picture
Replies 4
Last reply 10/1/2014 - 1:26pm
Replies by: Eileen L, Tim--MRF, Fen

I am a seven year stage 4 survivor on /Vemurafenib/cobimetinib combo as part of the Phase 1 trial. Have been NED for the past 18 months or so, have had a wonderful response to the Braf/MEK combo.

Have lived long enough to have developed breast cancer! Looks like it is HER2+ so treatment will consist of targeted therapy, probably Herceptin.  

Anyone out there on a Braf/MEK combo being treated for a second cancer with targeted therapy? My oncologist hasn't heard of anyone in my position but believes it can be done without drug interactions since the targets are so different!

This turn of events has totally thrown me into a tailspin! I feel like I have battle fatigue, can't  quite believe I need to be a breast cancer warrior as well as a melanoma warrior! 

Eileen L

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Shollands's picture
Replies 8
Last reply 10/15/2014 - 2:46am

Hi Everyone

I have my first mole removal coming up and am very nervous!


i have been a regular sun bed user with fair skin that burns easily.

Has a new mole appear on my chest but wasn't worried as heard that it is common to develop new moles up till your 30's.

However, in the space of the last few weeks it has evolved, changed colour, got darker and is getting more raised by the day, nothing like any of my other moles.

am very scared at what the outcome may be. 

Any advice you can give would be really appreciated.

Thank you all


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ABELL's picture
Replies 10
Last reply 10/2/2014 - 11:58am

Hi everyone,

Please read prior posts for history of the patient...

Need a little advice, really confused and in the dark. Best friend had cyberknife sometime in early August... Started Yervoy August 14th. Only on 2nd treatment now. Her condition has declined 110%. 

 At first, she was tired... Still allowed visitors, communicated via text & answered phone calls. Then the texts got jumbled, didn't make sense. Then those stopped. Now, she can no longer walk or talk on most days.

About a week and a half ago, she went the doctors (for declining health) they advised that she might still have swelling in her brain. They put her back on steroids.  She ended up in the hospital last night, dehydration plus she was not able to talk at all, could not get up out of bed.

They kept her overnight for MRI's, once last night & scheduled another one this morning (not sure why 2 MRI's would be needed).

Is this a normal reaction to Yervoy? Is this a sign that she is not responding to the drug?

I hear of people continuing to work while doing this treatment... Why is her body/mind just shutting down?


Any insight would be incredibly helpful...

Thank you!



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