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

Thanks!

Nigel.

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oldblue's picture
Replies 2
Last reply 9/28/2014 - 5:40pm
Replies by: oldblue, Bubbles

Hi all,

I am a recent diagnosed stage 3b and have been offered this trial. Its 50:50 whether I get the drugs or the sugar pills (placebo). The drugs are the BRAF inhibitor dabrafenib and the MEK inhibitor trametnib.

I had two inguinal lymph nodes positive on SLNB in 07/2014. This was followed up by one positive lymph node on the complete lymph removal from my L groin in August.

They say this may 'mop up' any cells still in my body. Every oncologist or surgeon or trial professor has used the term 'mop up.' This apparently is the first time this drugs have been used for stage 3.

Is anyone on this trial - its multi centre - or does anyone have any views or expereinces of it?

I'd be grateful for anything you wish to share.

Thank you in advance.

Nigel.

PS I'm being treated in Sydney, Australia.

 

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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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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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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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JerryfromFauq's picture
Replies 1
Last reply 9/27/2014 - 7:59pm
Replies by: BrianP

GSK and Pfizer combine melanoma drugs in new trial
Will investigate effects of adding palbociclib to Mekinist
The phase I/II trial will look at the effects of adding Pfizer's investigational drug palbociclib to treatment with GlaxoSmithKline's already-marketed MEK inhibitor Mekinist (trametinib), one of two GSK drugs for melanoma approved earlier this year.

Palbociclib is an oral inhibitor of cyclin-dependent kinases (CDK) 4 and 6 and one of Pfizer's top pipeline prospects, having been granted breakthrough status by the FDA in April as a treatment for breast cancer.

Trial 200344 is a dose-escalation, open-label study designed to determine the recommended combination regimen for trametinib plus palbociclib in patients with melanoma. It will also evaluate the effect of the combination on tumour biomarkers, safety and anti-cancer activity in patients with BRAFV600 wild type melanoma, including those with NRAS mutations.
http://www.pmlive.com/pharma_news/gsk_and_pfizer_combine_melanoma_drugs_in_new_trial_520905

 

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

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JerryfromFauq's picture
Replies 3
Last reply 9/27/2014 - 7:52pm

Special prayer request for 10 AM Saturday 27 Sept 2014. For Christian Kennedy. 18 month baby with melanoma., and his family. Please all that can join in from wherever you are. {https://www.facebook.com/ChristiansSpecial Spots }

6 hours ago
To Christian's prayer warriors, Cincinnati Children's Hospital in Clifton has agreed to allow a gathering for prayer in their Chapel tomorrow morning at 10 am.

 

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

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RJoeyB's picture
Replies 2
Last reply 9/28/2014 - 12:56pm
Replies by: mary1233, JerryfromFauq

As expected, the FDA today committed to a six-month priority review with BMS for nivolumab ("Opdivo"), following a similar process as that done with Merck for pembrolizumab ("Keytruda"):

http://www.reuters.com/article/2014/09/26/us-bristol-myers-fda-idUSKCN0H...

 

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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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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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ecc26's picture
Replies 10
Last reply 10/1/2014 - 8:45pm

Hi everyone!

I hope you all are having a good day today. I had been training for a 5k charity run for our local Cancer Resource Center that was to occur at the end of October. With my recent craniotomy, 5k is just not going to happen, but there is also an option for a 2 mile walk, which given my recover is definitely possible and I plan to participate in that segment instead. I have a few team members (my mom and some co-workers), but we need a good team name and I was hoping perhaps some of you out there might have some good ideas. 

I'd love to hear any ideas any of you have for a team name

 

Thanks, and again, I sincerely hope you are all well today

 

-Eva

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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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