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
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.

Login or register to post replies.

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...

 

Login or register to post replies.

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
 

Login or register to post replies.

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

Login or register to post replies.

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

Login or register to post replies.

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.

Login or register to post replies.

arthurjedi007's picture
Replies 17
Last reply 9/26/2014 - 3:36pm

I was wondering how long after the TIL treatment they have you come back for scans which I assume is to see if there are signs yet of it working?

I'm trying to figure out my plan B of TIL. I know the intial wait for the visit. Then the harvest and if that's good the 6 weeks to cook up the cells. Then the week of depletion. The new cells and week of whatever to stimulate which probably for me would be il-2. After that I'm not sure.

Still hoping for plan A of pd1 to be fantastic. Got a good start with over a dozen tumors shrinking and scans in a couple weeks I hope will show great. But pretty much overnight I lost some functionality of my left leg. Like if I'm sitting in a chair I can't lift my foot off the floor. But standing I can and walking is getting better without much pain. Also not as much pain in lower back and left hip. I also noticed in my last scan report there were 7 growing tumors instead of 5. So dunno if the leg issue is due to the left sacral ala tumor or what. I just finished radiation to lower spine and head last Monday and 7th pd1 Tuesday so haven't really felt like fighting another round of something going wrong. The leg issue started Monday morning.

Thanks,

Artie

 

Login or register to post replies.

Rocco's picture
Replies 4
Last reply 9/26/2014 - 12:50am

OK, likely nothing but..went to see my PCP today as I've felt a small lump under my jaw, close to neck for about 3-4 weeks.  No pain, no real growth/increase in size, just there.  PCP says next step is a CT so attempting to arrange this thru Onc's office rather than PCP.  Leaving PCP he notes that it could be return of Mel....dah..no kidding.  Of course it could be anything but Mel and I need to focus on that until cold, hard facts are in.  Just a bit frazzled to think of having a CT..

Trying to hang in there....

-Rocco

Stage IV since 2005

 

Luke 1:37

Login or register to post replies.

ecc26's picture
Replies 6
Last reply 9/25/2014 - 12:04am

Just wanted to say how nice it's been to see so many good news and happy stories the last day or so. I had my local follow-up this afternoon and also recieved a bit of good news: the tumor I had removed last week was completely necrotic- no active tumor at all. Probably explains (at least in part) why I never had any symptoms. 

Still don't have the final biopsy and there's still a few questions, but given that bit of info, I'm a bit hopeful that I may not have to return for radiation to the surgical site or, perhaps even the other lesions that were seen on the MRI prior to surgery in other locations. A few more questions still to be answered and hopefully I'll get more answers (and maybe a plan) tomorrow as my local (but very diligent) oncologist tracks down imaging, path reports, etc. 

Thrilled that tomorrow morning is my last dose of my steroid taper, and looking forward to resuming PD-1 as soon as they'll let me, and pretty happy that the tumor was actually dead- perhaps there's hope for PD-1 in patients with brain mets after all! We'll see what other info I get and what kind of plan gets proposed, but in the mean time, it really is good to see that others are doing well and getting some good results with their therapies. I think it's good for everyone's morale, at least it is for mine!

Keep fighting everyone- it's worth it and congratulations on all the good news! You all deserve it (and a little bit of a break)!

 

-Eva

Login or register to post replies.

tbmorgan's picture
Replies 5
Last reply 9/26/2014 - 2:39am
Replies by: JerryfromFauq, tbmorgan, Patina, Marianne quinn, Anonymous

My son TJ was born on August 28, 2013 and diagnosed with congenital malignant melanoma in his first four weeks of life.  He was born with a large mass on the back of his brain that was resected and biopsied at 10 days old by a pediatric nuerosurgeon who saved his life.  At two months the tumor returned and grew to slight larger size and was removed again.  At same time multiple small lesions started appearing on his arms, legs, hands, feet, back.  These were biopsied and confirmed as melanoma.

My son has been on Temozolomide orally 100 mg a day for 5 days a month for 9 months and Everolimus 2 mg a day every day for 3 months now.

The tumor in his brain did not show up again on scans but came back at 6 months and is now stable at about the size of a penny.  The skin bumps seem to be just slowly growing but scare me.

His current treatment is a wait and see approach and it scares me very badly.  I asked my doctor about what we should be doing and he really did not have a long term plan.  I told him that I try to research and look at google once every few weeks and he told me good, because he has a lot of patients and that he was not a melanoma expert and was not able to do that level of research.

I know the doctor team here is good and saved his life, but I cannot accept that answer, I started searching and found this site so easily, I was surprised they had not recommended this site to me.  Then I saw they had a family conference just two weeks ago and I missed it.  I was so sad.

TJ is an amazing child, he is strong, loving, and smart.  He has no developmental issues from the surgery, and is walking, dancing, and smiling all the time.

What do I do?

I need help.  I need to find the Doctors that can confirm my sons treatment is the best available or recommend something else.  I want a plan that I can live with.........

 

Login or register to post replies.

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

Login or register to post replies.

Ginger8888's picture
Replies 18
Last reply 9/26/2014 - 11:19am

Ok finally home from my visit and it's great news!! The spots in my lungs are GONE and the one in my neck went from 1.5 centimeters to 8 millimeters..All i can say is God is good and thank you to everyone for the prayers and positive thoughts..Scans again in 3 months to check to makes sure it's still working...Thank you Yervoy!! Stage 3 C and hopefully NED soon..

Login or register to post replies.

sweetaugust's picture
Replies 14
Last reply 9/28/2014 - 12:11pm

Hi Everyone,

I just wanted to let you know that I scanned last week and found out that all is well and I am still very healthy.  My disease is down to only that one bad node that had been the size of a peach, and is now the size of my thumbnail.  If you read my history, you'll see that my melanoma at the time of diagnosis (Oct 1, 2012 when I was 38 years old) was in several lymph nodes, all across my body, and I had a mass on my liver.   I have been on Merck's MK-3475 since October 31, 2012 (almost 2 years) and I couldn't be happier or feel luckier to be so healthy.

Just trying to pass on the good news and I hope it helps those that are struggling.

Much health and happiness to you all,

Laurie

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 9/24/2014 - 9:49am
Replies by: Anonymous, Patina, Janner

I noticed a couple weeks ago a small weird shaped mark on a toe of mine. I recently got a promotion also at work and have been working many more hours ( at least 10-12 a day ) in a very phsyical job. At first i thought it could be a bruise but after it did not go away i decided to get it looked at. I saw my primary and they took pictures and sent them to a dermatolgist who recommended a biosopy and possible full removal. But they only said "suspicous" lesion. They never said Melonoma but from what i have read that is not diagnoised untill after testing after removal thou. I had a consolt recently with a podiatrist and she said she was going to remove the whole thing and that it would be minor surgery. I would be put off work for up to two months because it's on the bottom of my feet it is harder to heal and i would be wearing a boot and useing crutches. If you have read all of this thank you, My problem is the timeing is horrible. I was suppose to be getting married by the end of the year and was just approved for a home loan. I had to jump through many hoops to get the loan and my fiance and I wanted to get a home before we get married. They do not let you get loans when you are on temperary disability. I am feeling pressure to post pone getting the removal surgey everyone is telling me it's no big deal. That i should wait a few months. I am not afraid to wait but am i making a horrible descion in waiting? I just think most people have no idea what the dangers or signs of skin cancer are includeing myself. Sorry if i'm ranting now. If i wait for a few more months am i putting myself in increased danger? Although i did tell my fiance if we can't find "the one" by the end of october i am schdueling and will not wait longer because of the wait of escrow and all that i would not even be able to schedule hte surgery untill months after we find "the one". Thanks for reading. 

Login or register to post replies.

JoshF's picture
Replies 8
Last reply 9/28/2014 - 1:55pm
Replies by: oldblue, ecc26, JoshF, Mat, rick1981, dvd

Hello Friends-

A friend of mine has a friend that is now stage 4. I don't know all the details but intial diagnosis was Stage 3 in 2012 with cells found in a lymph node. This year went to stage 4 and did IL2 with progression right away. I'm told there is metastasis to soft tissues, bones, liver and I believe lungs. The way my friend has talked about it...maybe he'll have a year left. Not sure if he is BRAF + or -.

I guess I'd like to know from Stage 4 patients who have a a moderate to heavy tumor burden and are still fighting or NED. As many of you know I'm stage 4...currently NED and in a Promethesus combo trial of Ipi and IL2. I did yervoy last Oct-Dec and then did 22 of 24 bags of IL2 in January. Scan since have been clear and I have scans coming up Oct 3rd. I did not have any lymph node invovement, the crap just decided to show up in my lungs. That being said I had low tumor burden and I'm not sure how much it matters. This guy was Stage 3 and fell into the 70% survival rate for his staging...I wish they'd update that. The way it sounds...he was told he was in better place than many but as we all know...this beast is tricky.

I have reached out to these people to try and get more info. They're going through a lot and I'd like to try and provide support....hope. I just hate when I hear someone is given a "timeline" to live. He clearly is prepared to fight but the way it sounds death is imminent. I've heard some great stories here and given the opportunity I'd like to share....give hope that he can be around more than a year!!!

Josh

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

Login or register to post replies.

Pages