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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ecc26's picture
Replies 8
Last reply 10/9/2014 - 6:54pm

or, at least I'll try to be quick- I tend to be rather verbose...

On Monday I travelled to the Roswell Park Cancer Institute in Buffalo, NY for a recheck MRI and surgical follow up. It's been about 3 weeks since my craniotomy for a 3.5 cm metastasis in my right frontal lobe. The original plan when I was discharged was to heal for 3 weeks then come back for gamma knife on a couple of other spots they had seen on the pre-op MRI that were not surgically accessable. Then the pathology came back on the one they removed- all of it was radiation necrosis, no live cells at all. That made me happy- I'm always glad to hear that one of my tumors is dead, but it also meant that they were now questioning whether I really needed another (would be my third) gamma knife, or whether the PD-1 might be getting in there and doing some work.

Under the impression they were going to hold off on the radiation, I was rather surprised when I recieved a phone call saying I had been scheduled for gamma knife. After talking with them, then with the surgeon it was agreed that instead of the radiation I would get an MRI to take a look at things and we'd discuss what things looked like and what the best path would be. 

The MRI happened at about 7:30 am, and the follow up/consult was at 9 am. I am so very very happy to report that the end result of that was that the spots they were concerned about appear less distinct than they did on the pre/post-op MRI so there will be no radiation (for now). Instead we'll re-scan in 6 weeks and see how things look. I'm good with that. I should also note that I was able to resume the now FDA approved PD-1 locally last Friday, so I'm really not even off schedule with that. 

Regarding the surgical site- the cavity is still a bit large, but it is reducing in size and the incision on my scalp looks quite good so everyone is happy.

Best of luck to everyone out there who's fighting their own battles- keep fighting, it's worth it!

-Eva

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MattF's picture
Replies 4
Last reply 10/9/2014 - 4:26pm

Quick Update

Stage IV in Dec 2013

BRAF Combo MEK and TAF ...Dec 2013 to Jun 2014

Yervoy completed a couple weeks ago.

 

Latest PET/CT showed some of the tumors have shrunk, some grown and some stable....there are however a few new items that showed up.

Paperwork and Authorization went in today for Keytruda. Which Doctor hopes starts within the next 14 days.

Just as backround....I have a number of tumors on my thighs, pelis etc and have had radiation there.....also 7 Mets in brain and have had SSR to brain in Aug 2014.  I am borderline Anemic.....I also have swelling in feet and ankles over the last 4 weeks...

Thoughts on the plan....

 

I mean Keytruda is pretty much next right?

 

Matt

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Carole K's picture
Replies 2
Last reply 10/9/2014 - 1:57pm
Replies by: Carole K, DZnDef

HI Everyone

     I don't know how it happened but my post below posted as ANONYMOUS.  NOt sure how I did that.My aplogies.  

     I am interested to see how many of you use the chat room and if you don't , would you mind sharing why you don't.  I found the chat room a wonderful plaece when i was here  The best way to do chat is to use it continually.  I have been on facebook for five months and yes it'sa wonderful place to go  adn there are several groups there.  The thing I LOVE ABOUT MPIP  is the community spirit we had.  It's stmall enough that you can get to know each others story.  Chat just takes thisngs to another level   You really get to know each other and honestly at times it becomes a place to just vent and yes  LAUGH.  It was a formum for many to come to when they were down  There were several conversations going at once  It resulted in many of us meeting several times in Asheville, Dallas, Michigan and Florida.  IT WAS SUPPORT LIKE NO OTHER.  The one thing about chat is as a group you have to respect when someone new comes to chat and welcoe them. What i usually do is I stop when someone new signs in  I welcome them and ask if they have any questions.  Let them share for a bit and explain what goes on in chat.  You may be having a conversation with two or three people and someone else may just be readng. It's different all the time  Sometimes the HUMOR Iis vry refreshing  I hope all of you try it and just keep going back  I promise you will get to love it  

That being said?  Is anyone up for a chat session?  I will post and e mail to several OLD TIME SURVIVORS TO MEET US HRE  

Just post and let me know .

Sending everyoe big hugs and positive thoughts.. Hang tough !!!! WE CAN DO THIS.. 

i OPENED MY EYES TODAY, IT'S A BEAUTIFUL DAY.  

Love and Light 

Carole K

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LisaMH's picture
Replies 8
Last reply 10/9/2014 - 9:43am
Replies by: DMU, FormerCaregiver, Anonymous, DonW, slpinion, Carol Taylor

Hi all.  Newbie here.  I got the call last week that my biopsy showed melanoma.  The details of my pathology report:

0.6 mm depth

non-ulcerated

Clark's Level II

1 mitosis

Non-brisk lymphocytic inflammation

 

I have an appointment with a general surgeon tomorrow morning.  The pathology report suggests excising with at *least* 1 cm margins, and from some of the research I've done, it looks like 2 cm might be best due to the mitosis.  I plan to ask the surgeon about that, but is there anything else I should question?

I have no idea what to expect at tomorrow's appointment and I'm pretty nervous.

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summergirl75's picture
Replies 6
Last reply 10/9/2014 - 3:03am
Replies by: summergirl75, JerryfromFauq, POW, Anonymous, Janner

I was diagnosed with Malignant Melanoma on Aug 21st/13.  I had a tiny mole on the inside of my thigh that I had never noticed before.  The doctor said it looked a bit suspicious but said I should not be concerned.  He took it out stating that it would give me peace of mind.  Imagine his and my shock when the results came back.  It was a clark level three, superficial spreading variant.  The tumor thickness was 0.65 mm.  No lymph vascular or perineural invasion was identified.  The pathological stage was pT1b, pNX, PMX (No idea what that means)...The margins were not clear...so I had the treatment below.  

 

My treatment:  I went to a dermatologist who found two basal cell tumors on my face which were removed by sort of a burning treatment...(no pathology report was possible).  A wide excision was performed on my leg and the pathology report came back clear.  Chest x ray clear, blood work clear.  

 

My questions:  I'm nervous that I should have had a pathology report on my basal cell tumors?  Please give me your opinions on this but don't scare me too much :)

Secondly, I have pain in my left chest and my left hip...I think this is because I had a baby two years ago and I believe that this is just aches and pains related to pregnancy, delivery, holding baby, breast feeding, etc etc...I am going to go to a chiropractor to see if im out of alignment.   Doctors ran a chest x ray which was clear and extensive blood work which all came back clear..  Should I be concerned that even though my pathology report said I am clear that I might not be...? Is there any advice considering the information provided above.  

 

Also, are there any links to good reliable natural prevention for this.  My oncologist does not believe that this was sun exposure related.  

Thanks in advance, I am just having some anxiety right now about the questions above...

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kentuckycat's picture
Replies 12
Last reply 10/8/2014 - 2:08pm

Hi,

 

I had a nodular 3.5mm primary melenoma  on leg 18 months ago with a positive lymph node and 1 local in transit met.  I was staged at 3c.  I was then on the ipi vs interferon trial and randomized into the 3mg ipi arm.  I completed ompleted the first 4 doses every 3 weeks and then 4 more doses at 3 month intervals.  This was completed in July.  I just found 3 small subq mets 2 inches from primary site.  A fine needle biopsy was done and positive for melanoma.  Ct scans were just done last week as well and all clean.  My melanoma specialist oncologist wants to do an MRI of brain and full body PET scan just to make sure no further disease.  Assuming all clear he wants to have surgery to remove the 3 mets and then interferon as an adjuvant therapy.  

My doc says I am still stage 3c.  What other options do I have?  Can I leave the mets and do some type of systemic treatment?  Can I surgically remove the mets and then do some type of adjuvant treatment besides interferon?  Any clinical trials available that I should look into?  I have looked into some clinical trials and it seems there is one with anti-pd1 but it requires no previous use of ipi.  However in looking at some of the infromation on this site, it seems others have been stage 3 and gotten some systemic treatment.  Is IL-2 normally available for stage 3c?  Thank you in advance for any suggestions.

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hyb222's picture
Replies 6
Last reply 10/8/2014 - 8:38am
Replies by: Janner, Carole K, hyb222

I had a weird mole on my thigh that changed a little last year after sun exposure and then rapidly changed the last 6 months as I began trail running. I had a shave biopsy that came back as an ASN but couldn't rule out Melanoma. I had  WLE that has come back clear but they STILL cannot tell me what I had...basically...we won't say you had melanoma but we are treating it as if it were. A pat on the back and hearty, "see ya in six months". They never even did a full body basic check. I have a spot that looks perfectly normal (just like the one did a year ago before it was excised) that had sharp pains underneath this weekend. Very similar pains were under my ASN. I guess I just don't have peace with "we got it out...but we aren't sure what 'it' was". If I post my pathology report, does anyone have an interest in seeing if they're familar with the terms?

 

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BrianP's picture
Replies 17
Last reply 10/7/2014 - 9:43pm

Just got my third 12 week scan in a row with the two key phases "Grossly stable" and "no new metastasis".  Not sure why they use the term "grossly stable".  I think "awesomely stable" is a better description.

For a quick recap, I started last August in a Nivo/Ipi/Nivo sequential trial with 4 cm and 3 cm nodes around the liver area.  After 12 weeks of Nivo the two nodes were about 40% smaller.  After the next 12 weeks of Ipi nodes were mostly unchanged but had numerous new mets in my lungs.  Ever since returning to nivo the lung mets have completely resolved and the two original nodes are holding steady.   

The durability reports of the anti-PD1 drugs gives me hope that I can stay this way for quite some time.  Not sure what will be next come August when the trial is scheduled to end.  I listen with great interest to those on the tip of the spear like Celeste and Laurie to see what they are hearing on that front.  Right now I'm just counting my blessings and so thankful for these new wonderful drug options.

Brian

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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.
 
Joe

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rick1981's picture
Replies 3
Last reply 10/7/2014 - 3:03pm

Hi everyone,

It seems like progress on cancer/melanoma treatment is moving at an incredible pace - which is a good thing. When my wife was diagnosed with Stage IV in June, our oncologist referred to Nivolumab as that "wonder medicine" he'd which he'd have access to - and only a couple of months later Pembrolizumab has been approved in the US and Expanded Access has open in Europe and Nivolumab is not far behind.

It's great to have options after the BRAF/MEK inhibitors (or in the future maybe as first line), but it thought it would be good as well to think even further out and look at what medicines may be next up in the Big Pharma's pipeline - so we can discuss this & potential trials with our oncologists.

So therefore this topic :)

(If it already exists, please point me in the right direction and this one can be closed).

The two melanoma medicines that have come to my attention very recently are:

BAVITUXIMAB: http://money.cnn.com/news/newsfeeds/articles/marketwire/1149321.htm. "statistically significant tumor growth suppression compared to anti-PD-1 antibody treatment alone in an animal model of melanoma". Trial with Yervoy/Ipi being started.

LIRILUMAB: http://www.mskcc.org/cancer-care/trial/12-224 Trial with Nivo. Ashley here on MPIP has mentioned this trial.

Good to know who's on these trials, what other medicines are being tested - and in the future to keep each other posted on Trial outcomes.

Best regards, Rick

 

 

 

 

 

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Patina's picture
Replies 1
Last reply 10/7/2014 - 1:55pm
Replies by: Anonymous

Very off topic...

I saw a spammy post again tonight and wanted to ask if anyone knows if there is a process to report them in order to have the posts taken down and the user account deleted? If there isn't a process for this feel free to send me an email and I'll at least I'll report them to Google.

I reported the site gojivitabr.com referenced in the post from yesterday to Google via Webmaster Tools. - I do online marketing for businesses and report links/site as spammy when I find them...

Here is the post I mentioned: "Because I was just too tired"

 

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cbe's picture
Replies 5
Last reply 10/7/2014 - 1:16pm
Replies by: cbe, sweetaugust, RJoeyB, Bubbles

My 48 year old husband has stage IV melanoma (N-RAS mutation), currently in several lymph nodes and spots on liver. After 2 rounds of ippy (stopped because of elevated liver functions), he is now on Merck anti-PD 1 (Keytruda). Despite being told that there are few side effects, he's feeling quite sick --tired, lack of appetite, low grade fever, persistent non-productive cough. (He had no side effects from ippy) He's on 20mg of prednizone--he's tried going off it but then he's completely wiped out. Also being treated for Thrush which helps somewhat.  CT scan last week showed liver spots still there, possibly bigger, but no spread to lungs or abdomen. Doctor considering adding MEK inhibitor.

How long before we should expect to see effects from the anti-PD 1? Has anyone had these kind of side effects from anti-PD 1? We can't tell if its from that, the steroid, or the cancer... Anyone have experience adding a MEK inhibitor for N-RAS mutated melanoma?

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katieherwig's picture
Replies 8
Last reply 10/7/2014 - 12:02pm

I was diagnosed six years ago with Stage 3a while 22 weeks pregnant. I went through one year of interferon and had been cancer free. On July 28, 2014 I was diagosed with Stage 4. I have melanoma in my liver, lungs, bone, and had in my ovaries. I had a intense surgery on August 8, 2014 that removed my ovaries. 

On August 20, 2014 I started my tafinlar treatment. On November 14, I go back to MD Anderson to have scans and possibly start my Yervoy treatment. 

i have a great husband and sweet 6 year old daughter. I am still able to work full time and really feel pretty good. Sometimes I wonder if I am in denial or just handleing this well. To be honest I'm not sure which one it is. I do have a strong faith in God. But I'm still scared and sad. 

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Lyric17's picture
Replies 25
Last reply 10/7/2014 - 9:22am

Hi everyone,  my name is Lyric and yes that is my real first name. I am 30 years old and I seem pretty healthy except for an issue I have going on with my index finger nail.

 

About a year ago I noticed a small skinny pale light brown streak on my nail. The line is near the side of the nail and not the middle of my name. It runs from the cuticle to the end of the nail. And to be honest I use to smoke and had quit about a month before I noticed this discoloration of a line on my nail. So when I spotted this I thought it was nothing more than cigarette tar stain to my nail and it would slowly go away since I was smoke free.

 

Six months went by and nothing changed. The small skinny light pale brown streak was in the same spot with no changes. My fiance kept telling me I was worrying over nothing and just to forget it and as you age your body changes. At the moment I went along with what she said but at times in the back of my head I didn't feel right about ignoring it. Kind of like it was my body telling me something or a possible warning. 

 

Finally at about a year I got tired of looking at it and after several hours of non stop looking online the only thing I seen remotely was something called Subungual Melanoma. My fiance did her own research and it's all she could come up with as well. She grew a little worried by now and so did I.

 

Next day I called my local clinic and doctor to get an appointment. I was able to see the doctor about an hour later. So the doctor looked at my index finger nail and was speechless. She said she had no idea in all her years of practice had she seen something like this. I mentioned to her what I found online and she left the room to do some searching. She came back and stated she had no idea and she called making a referral and appointment with a Dermatologist Clinic and Cancer Specialist next town over.

 

I had to wait about a month before I went to see the dermatologist. Once the dermatologist looked at my fingernail she asked if I'd like to have a biopsy done that day or later and of course I chose now. So the dermotologist comes back and ssys she is doing a punch biopsy of my nail and the skin area below the nail which is where melanoma/whatever it is is. She does the punch biopsy and not to much discomfort. 

 

Now I had to wait a couple weeks for the results of my biopsy. If I got a letter in the mail it was benign and if the called me it's malignant. Well today my results came by a phone call. But the RN says the results showed nothing but something is there and we need to figure out the cause of it. She said that this time I will be seeing the head main dermatologist next visit who will performing a deeper biopsy sample of the area. The RN stated they knew it was some type of melanonychia but don't know exactly why or what. So they don't know if it's benign or malignant or nothing. So now I have to do a second biopsy of the same spot and a little deeper. And now i gotta wait another month till my next biopsy. This concerns me a lot and has me extremely worried. My fiance keeps saying things will be alright but that people die young everyday - which this is not very helpful.

 

Can anyone give their thoughts and opinions here? I'd really appreciate it a lot. If you know anything about, anyone who has been through or if you have been through this please let me know more information. I feel lost and kind of like it's a type of cancer that many doctors don't know about. Help please!!!

 

BTW I have recently became a member also of Cancer Compass asking for help and thoughts. The people there have been really nice and I have had a couple replies but I would like to see thoughts and help also from those from melanoma.org site here. Please if you've have had experience, know someone who has or any information please let me know. I have included a couple pics as well of my index finger with the supposed issue. In the photo you will see the light pale brown line near the edge of my nail and you will also see where a recent punch biopsy was performed. As stated above that biopsy came back inconclusive and I have to now go in for a second biopsy which will be deeper. 

I'm a 30 year old white male btw just to give a little idea of my age and race.

I'm very terrified and scared. I have cried almost every day over  and can't imagine dying and leaving my two dogs and two cats. I can't imagine leaving my fiance as well who will not discuss or talk about it all. I have no family to talk to as I was adopted and have not talked with my adopted parents in over 10 years. I don't know my real parents and family so medical history and support is not there. I have no one to really turn to and I'm sorry for asking for help and support. But then again this could all come back benign but from what I've read one benign cases are more common in african american but with caucasian it's very rare and more possibly malignant. Plus the life expectancy is horrible. Help me with information or anything if you can.

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