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
_Paul_'s picture
Replies 11
Last reply 5/30/2015 - 11:30am

I remember quite distinctly sitting in my new oncologist's office last year on Wednesday, September 10. I had had a second recurrence, and I was sitting in his office to discuss the results from a PET of two days earlier. My prior melanoma oncologist had accepted a position at Stanford, and I think this was the initial meeting with new one.

I had had quite a few scans up to this point, but this time it was different. All the prior ones had shown NED. But this time I had mets in lungs, liver and gall bladder. I remember asking him what my prognosis was, and he said the conventional outlook was less than a year. So in my mind I assigned a drop-dead date a year out (apologies for the bad pun). I would be lucky if I made it all the way to midnight on September 9, 2015.

The big problem of course is the uncertainty. What did less than a year mean? A couple of months? Six?

In the past, I would just take time off work to meet with my oncologist when there were scan results to listen to, then go back and finish off the day at work. That had been my plan on this day too. But after hearing the results, I called my boss, and told him I would not be coming back. Maybe ever.

My next thought was I better enjoy my life while I still feel good so I booked a trip to Hawaii and in the meantime took off on a road trip throughout the south west.

After a few weeks I still felt pretty good. I had some side effects from treatment (ipi) but nothing from the cancer. So then I sheepishly returned to work, thinking I had overreacted. But everybody there welcomed me back and the embarrassment quickly faded.

I recently started going to a cancer support group because I wanted to see how other people deal with this strange state of existence. That’s when I heard someone jokingly use the term “expiration date”. That person had outlived hers and I am beginning to think I will too.

What I found was that over a period of just a few months, my fear of the unknown (unknown being how much time is left) has gradually been replaced with this strange outlook. It still seems quite likely that any chance of living to a ripe old age has been greatly reduced, but if I make it to my expiration day, that seems like a reason to celebrate!

I don’t think I am the only one that feels this way. I suspect there are a lot of us that go through a similar process. The end result is that for now anyway, my day to day life from the outside looks unchanged. But I have been left with this heightened awareness that I better appreciate each day of what is ultimately an uncertain future for anyone alive.

I hope someone can relate to this.

Paul

Login or register to post replies.

Mhardes's picture
Replies 2
Last reply 5/23/2015 - 1:46pm
Replies by: Mhardes, Janner

Sorry..still new to the site .. not sure if I should reply to the old topic or create a new one . I went to the dermatologist yesterday and had the melanoma superficial spreading removed. I t was a 1cm...before he did it..said that It was th lowest stage above zero.basically as low to ? Situ as it could be. He also said there was no need to see an oncologist and that with the stage its in no one would fault him for not even recommending it..but he knows I have been reading up on it and said if it makes me feel better he will refer me..he said no need though..no though..no one has ever discussed anything past the 1cm as treatment..they did have to do the skin graph so that was fun having two people working..one on each leg.in the end he said all looked great..good thing we got it as it could have been easily mistaken for a bug bite or something else..didnt look like a melanoma..going back in two weeks to take stitches out and j asked him to check me over then we will meet every 3 months for the first two years. I really want to take a breather and stop worrying ..I feel blessed that it elegant the stage it was...am I missing anything or should I be worrying about anything else.?Just want to finalize this bump in the road and move on...looking on my body..see all these other marks...just hoping all done now

Login or register to post replies.

Banders's picture
Replies 1
Last reply 5/24/2015 - 5:13pm
Replies by: Anonymous

Hello:

 

I'm stage 4 metastatic melanoma and yesterday (Friday morning, May 22) I had an oupatient excision in my upper right eyelid.

 

Feeling pretty good a day later (Saturday morning the 23rd) with no pain, but I can't open the eye.  The sheet I was given from the hospital didn't mention this topic and a pretty good google search also reveals no inforation about this topic specifically related to melanoma excisions.  

 

So to the point:  Anyone had an eyelid excision?  After how long were you able to open the eye?  I don't know if I should be trying to open it or the opposite.  

 

Thanks ahead of time for any info.

 

Brett Anderson 

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 5/23/2015 - 11:26am

Just curious what people see as the top trials for stage 4 right now. All opinions appreciated.

Thanks

(1 Peter 5:7 NLT). Give all your worries and cares to God, for he cares about you

Login or register to post replies.

Anonymous's picture
Replies 3
Last reply 5/24/2015 - 6:04am
Replies by: Anonymous, Linny, arthurjedi007

I had a SNB a year ago which came back positive for melanoma in one lymph gland and I elected to monitor by ultrasound rather than do the CLND.

I just had my three monthly ultrasound check up and the scar tissue where one of the lymph nodes was taken out a year ago now looks bigger and has some vascularity according to the doctor.

The doctor said it didnt look like the melanoma that was taken out in the SNB and was unsure what it was and has referred me for a Pet scan to make sure.

The doctor said all the other lymph nodes were clear on the ultrasound.

Has anyone else had this situation?

Can you just have melanoma in the scar tissue and if so what does this mean as far as treatment options go?

I so dont want to have a CLND as I live alone and dont have anyone to look after me.

 

 

 

 

 

 

Login or register to post replies.

Mhardes's picture
Replies 7
Last reply 5/22/2015 - 10:54am
Replies by: Mhardes, Janner

Hello, I got your message last night and thank you.  I have learned a lot during this process and am embarrassed at times with how I have let this put my life on hold..even had my deductible set aside for my max payout on health insurance.  It has really bothered me.  I guess I have been fortunate so far.  It has been a tough year in my life, in my marriage and I am upset with myself that I waited 1 1/2 years before getting checked again.  I am mostly upset that I have taken so many things for granted when others are so much worse off than me. If you remember, I had a regular checkup and the mole he said was fine a year 1/2 ago,he thought had changed.  He took a biopsy..then called me to get my permission for a second opinion.  I then visited him to get a worse case..as it had been almost 2 weeks. My dermatologist said that he thought it was worse case scenario a melanoma in situ.  He sent it to an expert at Harvard and said that he was one of the best at this.  Fast forward to today...I want to be happy that it wasn't a worse diagnosis...but I just want to hear form an expert that my chances are good...

Here is what I was told by the nurse today:

- she called and pulled up the report - said that it was diagnosed as malignant melanoma with superficial spreading

- she said the expert recommended a 1cm removal and a follow up every 3 months for 2 years and every 6 months until 5 years...( I go every year now) - his exact wording was...recommend a 1cm removal and careful follow up

- said it was early but no stage or anything - but didn't say in situ

- after reading a 1cm tumor is usually stage 1?- but that is what they are taking out

- apparently I don't need to. See an oncologist...so that part of it make me feel better i.e.

- she said that once it's taken out -just need to visit every 3 months

- they have scheduled me for tomorrow to have it removed - I was a little worried about why so soon ( that is how my mind works) then thought, that's good that they want Ito get it done now

- said they may need to do a graft from my leg ( the melanoma is on my back calf)

- you had mentioned in a previous post that this was just a bump in the road and the prognosis was excellent... Does this thought still apply with this final diagnosis?

thank you so much,

mike

Login or register to post replies.

Gordknight's picture
Replies 1
Last reply 5/21/2015 - 9:10pm
Replies by: Janner

I posted a few weeks back about a dark spot that had been in my WLE scar since it started to heal.  Always had dead skin in that area but just thought it was healing differently or I had an ingrown hair or a suture not dissolving.  Anyway it started to bleed and so I had my derm look at it and remove it.

He didnt think it was anything. 

He called me today and said that no melanoma cells were found, but he did say the biopsy found abnormal squamous cells and that I should keep an eye on it.  If it patches or gets a bump or itches etc etc.. I should come back to have more removed though he said it shouldnt be a rush.  Just soonish if I get those symptoms because it could potentially turn into Squamous cell cancer.

My question is:  Has anyone else experienced this?  Would it be normal for abnormal or atypical squamous cells to be in a healing wound from a WLE of melanoma?  Any advice?  What are the chances that it could turn into SCC?  I know its not really a melanoma question but I didnt really know where else to ask it, and because its in a scar from a melanoma removal I thought it might be relevant.  So many of you on here have experienced so much and are far more knowledgeable about this stuff that I.

Thanks in advance!

Login or register to post replies.

Mhardes's picture
Replies 1
Last reply 5/20/2015 - 11:26pm
Replies by: Janner

I was looking for advice last week and I was feeling better after I went to see my doctor. He had sent my biopsy out for second opinion and I was having a hard time with the waiting. I went to see him last Thursday and he said that if he were to diagnosis he would say pre melanoma but take out enough to cover a melanoma in situ. He wants to be sure. I was ok with the worst case scenario ..but the results were suppose to get back by Monday. .I called yesterday and no answer..now I am concerned. .I know it went to harvard last wed....maybe just patience..not doing very well...

Login or register to post replies.

Anonymous's picture
Replies 5
Last reply 6/5/2015 - 8:33am
Replies by: _Paul_, jessnflip, dentholla, Anonymous, BrianP

My husband,father of 5 young boys, had a few "annoying" moles removed about 2 weeks ago.
The Dr. Sent the moles to Mayo clinic and today called us into the office to hear the results.
Mayo did a FISH test and im not fully understanding these terms.
Obviously, my heart and head are in a whirlwind and ive been trying to gather as much info as possible.
All moles came back normal except for one on his lower back. It came back positive for malignant melanoma.
Here is what mayo sent back
Malignant Melanoma,type unclassified,is identified forming a polypoid mass in the dermis without definitive emanation from the overlying epidermis.
The tumor is invasive to clark level IV, Breslow depth 3.1mm, nonulcerated.
Radial growth phase is absent. Vertical growth phase is present (epithelioid cell type). Focal vascular invasion is identified.
Mitotic rate is 1/mm2. Tumor infiltrating lymphocytes are absent.
No regression or microscopic satellites are identified.
The tumor extends to 1.5mm of the peripheral margin.
HMB45 is positive in the lesion cells. Ki67 shows foci of increased proliferative activity.

Interpretation:
The results are abnormal. Increased copies of RREB1(80%), decreased MYB:CEN6 ratio (74%), increased copies of CCND1(72%), increased copies of MYC(40%), increased MYC:CEN8 ratio(14%) and loss of both copies of CDKN2A(50%) were identified.

My husband is 41 yrs old, father of 5 boys (ages 7-16!). Very active. Never had any signs of being sick or something being wrong....
Im in a panic.....im scared for him.
Our normal family dr. Doesnt have experience in this department so he wasny of much help in explaining. He did set us up for a full body ct scan for this friday and a surgeon appointment for tues.
Can anyone help me process these numbers and what it all means....thank you :(

Login or register to post replies.

vince1962's picture
Replies 4
Last reply 5/22/2015 - 9:48pm

Would like to know what type of side effects to exspect or what if any should I really look out for.

Login or register to post replies.

Keepingyourchinup's picture
Replies 14
Last reply 6/1/2015 - 9:25pm

I appreciate all of the input and support that I have found on this site thus far. Yes, I am one of the newly diagnosed patients with melanoma. I had a mole on my back that was considered "no big deal" and then turned out to be melanoma, initially thought to be stage 11b. I have had the wide excision completed with SNL and removal of both axillary nodes in April. My left arm biopsy turned out to be positive so I just had a complete removal of my lymph nodes under my left armpit (axilla) on 05/08. The node contained 0.15 mm of cancer cells and the rest of the nodes were negative. Now I am considered stage 3 with options that are confusing... The choices are : do nothing just observe, interferon and be sick for a year, pegylated interferon and be sick for 5 years or possibly receive ipilumumbab (spelling may be wrong...). 

I know that this has to be my decision; however, I was wondering if anyone knew where I could find any statistics on these drugs. I know doing nothing is not an option for me and the 5 year long course really isn't appealing either but I am just so confused at this point in time. If anyone has any help, it would be greatly appreciated. 

 

Thank you! 

Login or register to post replies.

ccco's picture
Replies 3
Last reply 5/20/2015 - 7:58pm
Replies by: ccco, Janner

I was recently diagnosed (via initial biopsy) with Melanoma. Just got back from my wide excision. The surgeon said that it was a Stage 1 (.3mm) and no further treatment/action was necessary. He said there was no need to do any lymph node testing. Will being seeing my dermatologist every 3 months for awhile. While I feel like shooting off fireworks, I am hesitant in believing everything I am told. Is there really no chance of lymph node involvement if melanoma was thin (.3mm)? I feel silly asking since so many people on this site are dealing with some really big issues but don't want to fast forward and find that the cancer spread. Thanks for any advice!

Login or register to post replies.

arthurjedi007's picture
Replies 14
Last reply 5/27/2015 - 9:50am

Just thought someone would like to know what I've learned about phase 1 trials. Basically they are very hard to get into. If I understand right from the several places I've talked to they seem to work the same. Basically they start with usually 3 open slots. If this trial is shared among multiple sites then the slots are shared too. When the last of those slots are filled the clock starts. In about 8 weeks they examine those folks and determine if the trial can continue and what they need to do like raise the dose or whatever. Then 3 more slots open and the process repeats. Sooo very narrow window of getting an open slot. A huge amount of time waiting. Lots of people wanting too few slots. Then we have to deal with some of the results reported might not be that stellar. Like the mga271 med had pretty much no response so they are testing now for the b7-h3 and hoping it will work.

Fortunately I've heard twice this week from NIH in Bethesda so I'm hoping that continues good and it will happen. It sounds like it will. The last numbers I saw had a 50% response rate and 12% cure. Which is incredible but who knows. But I've been on the wrong side of the 85% braf stuff sooo I'm hoping and praying if it happens this will work for me. Fortunately I'm still feeling ok and walking ok. I'm looking forward to it despite what some folks think about it. Dunno yet if it will happen but I'm hopeful. They did say the last step will be il-2 so I would rather do it this way than by itself.

Anyway enough rambling. Just thought I would share about the phase 1 stuff.

Artie

Login or register to post replies.

Anonymous's picture
Anonymous
Replies 2
Last reply 5/20/2015 - 5:05pm
Replies by: Anonymous, Janner

Hi I recently had a "severely atypical" mole excised from my neck.  I read a paper that says these sometimes are diagnosed as actually melanoma after the full excision is biopsied.  This thing has been on my neck for at least 1.5 years, and I'm kind of freaked out that it is actually melanoma.  Can I generally rely on the original pathology report that called this "severely atyipcal?"  How generally common is it for these severely atyipcal moles to actually be misdiagnosed melanomas?

Thanks,

Login or register to post replies.

Pages