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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AusLoveBug's picture
Replies 2
Last reply 9/30/2014 - 5:30pm
Replies by: AusLoveBug, Janner

Hi all,

I'm a 36y.o. Female from Australia. I know I've been very lucky in catching my Melanoma early, I was just hoping someone could put my biopsy report into layman terms for me, for my own understanding. I have to have more skin cut out tomorrow to be certain it's all gone. The part that worries me is that it seems like it was right on the margin & things I've read online say things like, when too close to the margin, cells can be pushed further in. I refuse to google anymore as I'll just make myself paranoid.

My story goes: I noticed a mole on the back of my shoulder that I just couldn't recall noticing before. I wasn't sure if it was new, or was something that was always there just incognito or if I'd seen it a million times but not actually paid attention. I went to the doc as I had a nagging feeling that something wasn't right but even my GP thought it was ok but suggested removing it & checking it anyway if I wanted to. Funnily enough, I said "Can you just take it out as even if it's ok now, it looks like the kind of thing that may be a problem later"... There was nothing overly suspicious looking, it was flat, 5x5mm, but it did have a paler colour in the middle - but that feeling kept nagging away so I trusted my instincts. Whew!

The microscopic examination: Level 1 superficial spreading in-situ melanoma. Nests of atypical epithelioid & spindled melanocytes at the dermal epidermal junction. There is lateral confluence of nests & there is confluent growth of single melanocytes along the junction extending along adnexal structures. There is limited upward drift. There is a dense superficial chronic inflammatory infiltrate, consistent with early regression. There is no dermal component. Lesion lies 0.2mm from the nearest lateral margin.

So I know it's only in the top layer of skin & all should be ok, at least for this one, I just want to know what all that stuff is explaining. Could someone help me?

 

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ronald duclos's picture
Replies 32
Last reply 9/30/2014 - 3:36pm

I have stage 3c melanoma and I am starting biochemo this friday.  I am wondering what to expect? Will my hair fall out? How much excersize will I be able to do (I like to hike and walk/run)...Most importantly, after the treatment, how long before I will be able to go back to work.

 

Any other info on side effects of the biochemo would be greatly appreciated.

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dvd's picture
Replies 7
Last reply 9/30/2014 - 1:57am

A little less than a year ago I was trying to understand the meaning of being diagnosed with advanced Stage 4 melanoma. It was difficult to comprehend the possibility of time running out, of not having to plan for the future, of the world moving on without me. With meditative focus, I ultimately prepared, intellectually and emotionally, to leave - a difficult and almost surreal task. The investigational drug trial was something to do in the meantime.

But I, like others in this forum, have been given a gift of more time. Yesterday, the results of my fourth CT scan over the past six months were consistent with the rest -- no evidence of recurrent disease.

The radiologists are still arguing whether or not the small sclerotic bone lesions are mets or just "bone scarring,", but they are few, small and haven't changed in 6 months, so I'm optimistic.

It's been a little rough climbing back up after being in a deep valley for a while, but I feel like I'm nearing the top. My strength is coming back, my weight is back, surgical scars have all healed, radiation burns are but a memory and there are days that I truly feel energetic. Bicycling, swimming, hiking, tennis - they're all a part of my life again. I'm taking advantage of the extra time I've been given.

Hopefully, this trend of good news from melanoma survivors will continue to grow. I'm a retired physician, and when I was in medical school, my diagnosis would have been a death warrant, but not now. The trend is a welcome change, and a very hopeful one.

 

DVD

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Scribe's picture
Replies 4
Last reply 9/29/2014 - 8:25pm
Replies by: Scribe, Janner

I realize that so many here have much more serious situations, but if someone wouldn't mind commenting on this, it would be much appreciated. My husband, who is 72 and has some cognition issues, was diagnosed in February with melanoma and had a wide exicision in March. He hasn't asked many questions of his doctor about this. It has taken some time, but I was able to go with him today to the dermatologist and got a copy of the original pathology report. I realize there is probably nothing much to be concerned about, but since he is older and has a long history of other skin cancers, including some large sqamous, I just want to have a sense of this:

Melanoma in situ. Reviewed by dermapathologists. 2.0 x 1.5x 0.1 cm.  Poorly defined lateral margins and comprised of atypical melanocytes throughout all levels of the epidermis.

(Later, after the WLE, the plastic surgeon told him the biopsy report had said they had missed 1 cell.) 

Thanks in advance for your comments. 

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JerryfromFauq's picture
Replies 6
Last reply 9/29/2014 - 4:49pm

HAS ONYONE BEEN ABLE TOENTER THE CHAT ROOM IN THE PAST WEEK?  I HAVE TRIED EVRY  FEW DAYS WITH A ZERO SUCESS RATE!

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

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Doug-Pepper's picture
Replies 7
Last reply 9/29/2014 - 2:43pm

Routine chest x-ray showed something on lungs. Pet scan showed nodule in right lower lobe measuring 1.6 cm x 1.5 cm. & another smaller one.  Another ct scan scheduled for tomorrow on lungs &  brain also. We meet with a surgeon on Friday.Not sure if they will biopsy or remove. Any advice or prayers are greatly appreciated.

"God is our refuge & strength, an ever-present help in trouble." Psalm 46:1

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oldblue's picture
Replies 11
Last reply 9/29/2014 - 12:18pm

My oncology surgeon told me that she felt that they were related. She estimated that over half her clients reported extreme or very high stress in the previous 12 months before a melanoma diagnosis.

My personal experience confirms her hunch. But, is there any research that people are aware of relating the two?

Thank you.

Nigel.

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missourimom2008's picture
Replies 7
Last reply 9/29/2014 - 9:16am
Replies by: oldblue, Anonymous, missourimom2008, malika, Tim--MRF

My husband was diagnosed a few short months ago with Malignant Melanoma, right before his 25th birthday. He has undergone 1 surgery and his pet scan just came back negative for which we are feeling very blessed. We have however been referred to a specialist at Barnes-Jewish Hospital in St. Louis due to the fact that he has a mitotic rate of 15....I know his Oncologist said ideally it should be 0, does anyone have any answers, advice, experience or information about having such a high mitotic rate? I have done some research but just am not finding much. Thank you!!

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brooke's picture
Replies 14
Last reply 9/29/2014 - 7:02am

Hello!

I've been reading about various 'cancer fighting'  supplements and wondering if anyone has opinions or experiences with them.

I've heard especially good things about curcumin, wondering what common dosing is.

My  husband has also been juicing every day and I've bought him green tea extract and vitamin D. 

(We are not doing this in lieu of standard treatment, just additionally!)

Thanks,

Brooke

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kylez's picture
Replies 1
Last reply 9/28/2014 - 7:03pm
Replies by: Thandster

Has anybody heard from NYKaren? I haven't seen her post in awhile. A couple of months ago she was starting pembro after a long fight to get the treatment.

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RJoeyB's picture
Replies 8
Last reply 9/28/2014 - 6:54pm

After my update in July…

 
…it's been a tough go.  With the positive trend from June to July on my brain MRI showing a reduction in the enhancement along the previously (February 2013) radiated tumor bed along with reduced cerebral edema (swelling), my doctors started to taper my dosage of dexamethasone, with the goal of getting me off the steroid as soon as possible within safe taper limits.  Although the edema was still present, the thinking was that as we tapered over 4-5 weeks, the edema would continue to resolve, along eventually with the issues with left-side motor control.  And getting off the steroid was welcome, because the side-effects were miserable and getting worse.
 
Unfortunately, the motor control issues persisted and slightly worsened during the final few weeks of the taper.  At the highest dose before tapering, I was on 8-mg daily (4-mg a.m. and p.m.) for about six weeks, then for the taper it was cut in half to 4-mg, then 2-mg, then 2-mg every other day, with the cuts happening about every 10 days.  When I transitioned from 2-mg to 2-mg every other day is when I started to notice things getting worse.  I read a lot about people who experienced "steroid myopathy" in various forms during and after an extended course (> 2 weeks) of dexamethasone, and despite the fact that the issues were predominately left-side, I was generally weak in all my limbs (typical with steroid myopathy).  Since I've had so many issues with my left side earlier as part of my melanoma journey (all for bone mets:  partial shoulder replacement with 10" titanium rod, plus radiation and surgery to mets in my femur and tibia just above and below the knee, all left side) that I thought perhaps it was a combination of myopathy being amplified on my already traumatized left side.
 
But about 10 days ago, right around two weeks after completely finishing the steroid, things got even worse and it was pretty clear that this was different than myopathy.  I couldn’t bend my ankle or move my toes at all, grasp or pick up anything with my left hand, and my arm’s range of motion was much worse than its already previously reduced state.  No real pain to speak of, but I couldn't walk, get up from bed or a chair, shower, or get dressed without assistance from my wife.  We planned to call the doctor last Monday following the weekend when things really got bad, and after falling in the yard walking from the car to the front door, it was just further proof that we needed to call.  Everything is consistent with unresolved edema and the location on the map for left-side motor control, all what we'd expect, but still very frustrating and disconcerting.
 
Last Monday, my radiation oncologist started me back at the dexamethasone dose, 2-mg, where I had started noticing the symptoms worsening, to see if that would start to make a difference.  She feels, and we agree, that the symptoms and timing are still consistent with radiation necrosis that hasn't resolved, rather than tumor regrowth at the original tumor site.  But, if things continued to worsen, she considered moving up my next brain MRI to help rule out a new met elsewhere.  I spent the week between bed, the recliner, and some time at my home desk, but needed help just getting from spot to spot, doing one-handed typing while trying to get some work done.  I had an unrelated appointment at the hospital, but had to use a wheelchair in the building.
 
By Thursday, we hadn't noticed a change, but it also hadn't gotten any worse, so she increased the steroid dose to 4-mg.  After a few days, by Sunday or Monday, there was very subtle improvement.  If I had to give it a number, it was maybe 5% better.  Where I couldn't move my ankle or toes at all for a week, I could now see very slight movement and a twitch when I tried to move them.  Same with my smaller fingers (my thumb and index finger have been less affected, an interesting quirk of the brain's motor control map), they could start to help grasp things.  But the improvement was still so small that I couldn't be sure if it was just wishful thinking and/or getting better at compensating for this (hopefully temporary) disability.  
 
We picked up a quad cane which has helped with stability and mobility and allowed me to get into the office this week (with my wife doing the driving), and still having to hunt and peck when on the computer.  The past few days have shown a little more improvement, again nothing major, but enough that I can stand up from the recliner and get out of bed on my own, awkwardly but under my own power.  I think I'm past it being wishful thinking or better compensating, but it is slow going.  I also had an evaluation for occupational therapy (OT) yesterday and will start a program next week, along with a physical therapy (PT) evaluation.  Until we see more improvement and resolve the root cause, PT won't help much, but OT can help with some "getting by" strategies in the meantime.
 
Next step is my regularly scheduled brain MRI this Monday (8 weeks since the last one).  We fully expect that the swelling will be present, along with signs of radiation necrosis enhancement at the site of the original tumor bed.  We know that the MRI can't differentiate between necrosis and tumor, but given the subtle response to the steroid reinduction, assuming the edema and enhancement are where we expect, it won't be a surprise.  Hopefully that is as we expect, at which point my doctor may decide to again increase the steroid dose.
 
From what we've discussed and I've read elsewhere, sometimes this is the game and balancing act that is required with radiation necrosis, requiring multiple go-rounds with dexamethasone, trying to manage, control, and reduce the edema symptoms while also minimizing the time on the steroid.  My doctor has also said in more difficult cases that a second craniotomy to excise the necrosis might be considered and there is some off-label use of Avastin (becacizumab) with necrosis because of its anti-angiogenesis properties, but we’re not at the point of looking at either yet.
 
Long story short, has anyone else out there had a similar experience (or any experience) with radiation necrosis following SRS?  It's been frustrating and discouraging to be this far out from the actual treatment and now dealing not with the tumor itself (as best we know) but a late onset side-effect of the single session of SRS over 18 months ago since my last true new met.  The estimate is that 10-15% of those who receive SRS to the brain will have diagnosed radiation necrosis, but that as high as 50% may have it at some point but be completely asymptomatic and therefore undiagnosed.  Onset is usually in the 6-24 month range, post-treatment, with a plateau and stabilization after two years, even for those who struggle with it.  Personally, I went from exercising regularly again and feeling better than I had in four years since diagnosis to the worst I've felt, and again, not from new disease but a relatively rare complication of radiation to the brain.
 
Curious,
Joe
 

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katie1's picture
Replies 7
Last reply 9/28/2014 - 6:30pm

I'm wondering how people are doing with their adrenal insufficiency over the longer term.  Have you had to change your steroid dosages over time.  If you have had recurrence has it necessitated a change in dosage.  Have you had symptoms of adrenal insufficiency without a known cause (ie illness)?

There doesn't seem much in the literature about long term maintenance of Ipi induced adrenal insufficiency. I have only found articles that describe the phenomenon.   My husband participated in the adjuvant Ipi (3mg/kg) trial and developed hypophysitis a year ago following the 4th induction dose. 

The general attitude seems to be take some medication and all will be well.  I'm wondering if that is the general experience.

Kate

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oldblue's picture
Replies 2
Last reply 9/28/2014 - 6:06pm
Replies by: oldblue, RJoeyB

Thanks!

Nigel.

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