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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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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TinaB's picture
Replies 5
Last reply 10/6/2014 - 7:58pm
Replies by: Bubbles, BrianP, RJoeyB, TinaB

Hi

A year ago I returned home from a 10 day business trip to find the "depression" symptoms my husband (we were only married for 8 months) was displaying had worsened. I started a concerted fight to get someone look at it seriously. He was very apathetic, so I had to cajole, connive and lie to get him to a doctor 3 times in 8 days. Finally I had him admitted to a psychiatric clinic and the psychiatrist decided on an MRI - Thank God!. She told me not to worry, there is a 1% chance of it showing anything, but that was the moment I knew - he has a brain tumor. I was right...(sometimes it is awful to be right!). He had a 5.3X5.2 tumor in his right frontal lobe with severe swelling of the brain. During the two days we had to wait to see a neurosurgeon he deteriorated rapidly - paralysis, confusion and just total incomprehension. He became a little boy.

On the 23rd of October the surgeon removed the tumor. Then two weeks of silence. I kept on asking about the histology and just got silence back. Finally the doctor saw us to remove the staples from the craniotomy. But his first words to my husband was: "Take off your shirt." I knew. Melanoma.

He had already set up an appointment with a radiation oncologist for us for the next day. This is why he waited so long to give us the histology results. There was no time to look for a second opinion or to do more research. I was panicky and hubby still apathetic. The radiation oncologist (telephonically) informed my husband (who couldn't care) that he is changing the radiation treatment from SRS to 3D conformal radiation therapy. I couldn't get answers since I am not the patient. He had 5 sessions of radiation - how much I don't know - because I am not the patient.

I started hunting for a medical oncologist and finally found one through my husband's nefrologist. He is one of only 10 in our country! It seems patients are by default sent to radiation oncologists since there are so few physician-oncologists. Never mind a melanoma specialist. (Our country has the second highest incidence of melanoma after Australia). This doctor is great! Yet he only offered watch and wait - it would have been our preference too. In the mean time he has had MRIs every three months and is due for a PET scan in November. So far No Evidence of Disease! Thank you, thank you, thank you.

How is my husband doing? He sleeps most of the time, he is sometimes confused, he has developed epilepsy and is on two different medications, he has stage B chronic kidney disease, he has short term memory problems, there is something wrong with the way he walks, he has very little interest in anything outside the home. The way things look now, he will never work again. He even forgets to water the plants.

The man I married only 21 months ago is gone. Gone is the highly intelligent, very musical Maths genius with an acute social awareness. In his place I have a little boy eager to see me, who pines for me when I'm at work. I get nervous when we are in social situations, since he is bound to say or do something completely inappropriate. Some days are better than others. I still love him with all my heart and will always take care of him!

Currently I just feel overwhelmed and alone. I stopped talking about all of this to friends and family - thinking they must feel I'm always complaining. Financially it is a struggle, we both have college aged kids from previous marriages and just my income. Luckily I have very good medical aid (medical insurance), but I still have to contend with ever increasing cost of living and the realities of living in this country.

I am reliving every moment of one year ago. I am double guessing myself. Most of all, I think I should have stopped the radiation therapy - I suspect that is the reason for his current state, and why his confusion is growing. Suddenly I cannot stop crying...

I am grateful that he is with me and "healthy", I am sad that at 52 he is suddenly a very old man. I am truly glad I knew him before he got ill. I am all in all happy to have him around and to care for him. I just really wish I can have him back the way he was...

Now I'll dry my tears and cook a nutritional supper, while doing some work in between, because I fell behind today what with all the feeling sorry for myself!

 

 

 

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Hello,
 
As the subject says, I need the below explained please.
 
Mole biopsy report says:
 
"within the dermis, there is a moderately heavy lymphohistiocytic infiltrate including melanophages"
 
What does this mean? Is the presence of melanophages normal?
 
Thanks in advance.

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Replies by: DZnDef, Squash, JoshF, washoegal

Not sure what happened with the other TWO postings, I wish there was a way to edit/delete topics, I accidentally posted them without putting the subject/title in there.  Anyways:

 

I will do my best to make a very long story short. 

I have Melanoma and recently had yet another scare (I had, what I am hoping to have been, a lipoma removed from my back last week - still waiting on path results).  My husband felt the mass on Labor day, it was about 3-4cm in diameter and about an inch or so under my scar from my primary.  Any lump, bump or mass on us people with Melanoma is completely terrifying for obvious reasons.  So, needless to say, this month has basically been mentally hell.

Now a little bit about my husband.  He has low testosterone and gets bi-weekly injections to combat this.  With these injections comes a crazy sex drive.  Let’s connect the dots…

Since my diagnosis a year and a half ago I have not been as ‘frisky’ as I was.  We are married – been together for 10 years – our sex life isn’t what it was like during the first 3 years together.  The most unfortunate side effect from Melanoma has been the constant fear of that nasty beast coming back and as I am sure all of you are aware, that thought never travels too far from view. 

I am already emotionally shut off (which is why I tend to write my feelings – this is why my blog has helped me through this whole shit-show).  I like to joke that I am a phenomenal ‘wall builder’ and essentially use that as a defense mechanism.  During times when I am freaked out about one thing or the other, I close right up like a clam.  Sex can be so far from my thought process – and half the time my husband has been drinking and that doesn’t help the situation either.  We’ve been fighting quite a bit lately about this…our fights can be nasty and he tends to throw out the “D” word (divorce).  It’s exhausting and frustrating and I just wish it would stop.  But just simply wanting it to stop doesn’t “turn me on” – especially when we’re in the middle of one of these nasty arguments. 

My question is how to help this?!  Have you dealt with this and how? 

~(lack of sex)ually frustrated  

"Everything happens for a reason"

holymolymelanomy.blogspot.com

 

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ecc26's picture
Replies 9
Last reply 10/6/2014 - 6:52pm

I feel like a yoyo these days. I finally got the path report (last week) from the mass they removed from my brain about 2 weeks ago: all radiation necrosis- no live cells. 

In some ways that's great- better than having active disease! But now they can't seem to decide what to do with me. Pre-surgery the plan was to give me about 3 weeks to heal after the surgery then bring me back for gamma knife to the surgical area and a few other spots that were seen on the MRI in non surgically accessible areas. That was fine, but with the path report now they're concerned that perhaps that's not the best course of action given that what they took out was radiation necrosis. If the other spots are as well then more radiation is NOT good. I feel like I'm being tugged back and forth between some who still think I should get a gamma knife and those who don't. To be honest, not that gamma knife is such a big deal, but if I didn't have to do it, I'd be perfectly happy. 

At the moment the plan is for me to go back to the hospital where the surgery was done (Roswell Park in Buffalo, NY) on Monday for a follow up MRI. If things look at least stable, no gamma knife. If there's growth or anything new- the conversation starts all over again. I'm really hoping things are stable and I (and  my husband) can get a break from all travel and doctors stuff. I'm still not cleared to drive myself after the surgery (even though I never had any symptoms of any kind pre or post surgery and have been back to work full time this past week). Having another gamma knife would delay that clearance for sure. 

I'm happily off all medications except the anti-seizure, which I suspect will continue for at least a few more weeks.

On the bright side- I got my first dose of the now FDA approved PD-1 here locally yesterday! So excited to be back on that and to not have to drive over 6 hrs to get it! Even with the surgery I'm really not even off schedule with it (maybe a couple of days as I used to get them on Mondays and this one was on a Friday). Super excited I can get it at home now. Yesterday was dose number 6!

Wishing everyone out there all the best as you do battle with this horrible disease. Hold on to hope and remind yourself that it's becoming more managable every day- I am now almost 3 years since progressing to stage IV, and 2 years and 3 months since my first brain mets. I've been through every FDA approved therapy (currently on the Merk PD-1) had whole brain radiation, 2 (possibly soon to be 3) rounds of gamma knife, and a craniotomy for brain mets and I'm still here! You can do this, it may seem like an impossibility, but you can do this! If I can, you can

 

-Eva

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G-Samsa's picture
Replies 2
Last reply 10/6/2014 - 3:12pm
Replies by: kylez, BrianP

Recap:  My last treatment (Nivo/IPI) was withheld based on scans which indicated some growing unknown in my lungs...I have melanoma there (and pretty much everywhere else), but it has been stable for about a year and a half.  There were a number of possibilities -- with the most likely being a  cumulative reaction to the drugs (but the rearing head of melanoma not ruled out)

Resolve

 

Seems after an interim scan the docs are confident I have been reacting to the NIvo.  This seems to have been bolstered by the inflammation of my joints which was becoming extreme by the time I stumbled into the office for the verdict/checkup.  The reaction in the lungs seems to have hit its high water mark already and the joint inflammation is being dealt first with Aleve and if necessary steroids.  ( whether I get my final treatment, scheduled in  six weeks is up in the air). 

If there is something to be learned by the community here, it may be that pneumonitis and joint inflammation are beginning to be seen as "classic" symptoms of Nivo taken over time.  I was told of a number of instances, including someone who had never reacted to the drugs until the last treatment, and then had a fairly extreme reaction requiring hospitalization.   There's a lot of experience in the facility where I am treated so this is good to know about .... I've heard again and again that the Nivo is Ipi's benign cousin.... but it's  a powerful drug nonetheless. 

 

 

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