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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Anonymous's picture
Anonymous
Replies 1
Last reply 1/1/2017 - 12:08am
Replies by: debwray

Was diagnosed with Stage 4 Mel in 2014. Have tried interferon, IL-2, ipi & opdivo. I've had good responses with the opdivo, but have stopped responding now.   My dr wants to try a new clinical trial.  It's a combo of Glembatumumab Vedotin & Varlilumab.  Is anyone familiar with this?  Feel as if I'm running out of options.  Any info/advice is greatly appreciated!

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Anonymous's picture
Replies 1
Last reply 12/31/2016 - 11:39pm
Replies by: debwray

What were your experiences? I don't see a lot of research on this. 

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Hriggenbach's picture
Replies 7
Last reply 12/31/2016 - 9:52pm
Replies by: Hriggenbach, debwray, _Paul_, Janner, Anonymous, Aloha14

A few subcentimeter hypodensity in the interpolar region of both kidneys 

 Irregular soft tissue  density and the left inguinal Area secondary to recent limp node dissection. No ascites 

 

can anyone explain what this means??

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/31/2016 - 7:41pm

Hi,

This is my pathology report for in situ: 6x5x1 mm specimen. There is a profilerat6ion of atypical melanocytes present in the epidermis with irregular nests of melanocytes aggregated at the dermoepidermal junction and solitary melanocytes present within the epidermis. The process is confiend to the epidermis. These changes represent primary malignatnt melanoma in situ. Is this pretty standart report for in situ? To me it looks like that there are abnormal melanocytes. Who make the decision if it's in situ or atypical mole? I had this mole slowly growing over 12 years.

It will not change my outcome.. but just wondering... Thanks and appreciate all your help on this forum so far.

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JoshF's picture
Replies 31
Last reply 12/31/2016 - 6:18pm

So plan is Abraxene and Keytruda. The panic button has been hit. Sounds like if this doesn't work, my time will be limited (6-10 weeks)before I go into liver failure. Oddly enough the oncologist at MDA Mike Davies didn't share that news. Coward. Yes I'm bitter about my experience at MDA. Don't blame them but I definitely have issues with the way they handled some things. This post isn't about that though. I am bitter about not getting compassionate TIL...my cells, they should give them to me...I'd absolve them of anything.

Anyway trying to get treated ASAP...possibly this week. They're going to keep close tabs on me and scan frequently to check on progress. Sounded like Biochemo, chemo embolization or radio embolization may be options but at this point 3 melanoma specialists feel my best chance is this systemic treatment. I believe if this doesn't work, I'm finished. Outside of having an LDH of 10,000 my blood work isn't horrible. I've felt pretty good. I'm stunned and adding the fact that so many others are hanging in balance is just painful. I can take this but tucking my kids into bed last night just tore my heart out. I'm going to pack as much living in with them, my family and friends. But it's bittersweet. We've never personally met but I think many of you have figured me out. I'm a former Marine who is as tough as they come but I've always have had a soft heart. People suffering impacts me greatly, people are invaluable...especially good people. So it hurts to see others suffering. My family is everything and they will suffer and there's nothing I can do. It has broken me. The other thing about me is I don't quit, I'm a realist and not afraid to discuss the realities of where this can go. So now I get ready to fight and pray that this buys me time so I can get into TIL or another promising trial. I didn't mean to get long winded but I'm not sure I'll be back here and wanted to conclude with that so many of you have been like family to me. The kindness, sincerity and love I've received has been a blessing. We've celebrated successes and grieved as we lost friends. Finding this group almost 6 years ago was a good thing. I love you all! To those who contribute knowledge and advice...keep it going, it's invaluable. Those who just support and offer comfort...stick around, it's uplifting and meaningful. I hope to be back but if I'm not I wanted to get this out and let everyone know what this community has meant to me. Finally special nod to Celeste, Ed, JBroncki, BrianP, Mat, KyleZ, Jaimeth29,casagrayson, Patrisa and so many others who have been here with me for a long long time. I'm sure I missed many others...not intentionally. Just emotionally worn out. Love and peace to you all!

Josh

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

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Anonymous's picture
Anonymous
Replies 12
Last reply 12/31/2016 - 6:15pm

Today has not been dull. Two hours after my 4 AM infusion I had a reaction. It was intense shivering (rigors) similar to the ones from two days before but this time it was accompanied by what felt like an inability to breathe (Strider).

 
The trial lead investigator told me one more treatment could kill me. But I had only received 3 bags of IL-2, on top of  low TIL yield. 
 
It was an agonizing decision to make, since I will die soon without treatment and this looked like my best shot. 
 
I asked the lead investigator what she would do if she were here in the bed not me and she said that she would go for another infusion.
 
I finally said go for it, so long as all the countermeasures were in the room first: 50ml Demerol syringes, anaphylactic stuff and steroids.
 
So then the lead investigator spoke to my regular oncologist. He reminded her that I already have had many immunotherapy treatments which could be causing all kinds of strange reactions. Also I respond very oddly sometimes to immunotherapy such as being one of the first patients to develop type one diabetes in response to ipi.
 
They said there have been instances at MDA of people completing the first two portions of the treatment but for whatever reason not able to take any of the IL-2, and still have some form of response.
 
They have to wait for six weeks for the next set of scans because the TIL works slowly and they cannot get any meaningful data until at least six weeks.
 
Frankly I don't know if I'm going to last six weeks. So now I have to spend time and come up with my best Plan B. So I am going to go back to Celeste's post with the set of links, and Ed's link about with the De. Hamid interview. I need to really get wheels in motion now, not 6 weeks from now.
 
I will be honest. That breathing thing was the worst experience of my life. And it is a response nobody has seen before. I honestly thought I might die.
 
But, as you can see that was not the case.
 
But now I have to recalibrate my personal 1 - 10 pain scale.
 
When they told me no more bags of IL-2, it was both the best news and the worst news.
 
Even though things are a bit more dire, I'm not giving up. Life is just too damn awesome to let go easily (although that was not my thinking during the Strider/Rigors combo).
 
I feel compelled to say this last thing. I am not religious at all. But I believe deeply in God. When asked if I wanted another bag of potentially terminal IL-2 I prayed to God for an answer. Shorty after that was when I received the news that there would be no more IL-2. The need to make a decision was removed, that was his answer.
 
Sorry for the typos--it's my accursed autocorrect.

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Aloha14's picture
Replies 6
Last reply 12/31/2016 - 2:19pm

I'm sort of afraid to go out in the sun even with sunscreen on since having melanoma. I have severe osteoporosis and was originally told to get some sunlight to get Vitamin D, and use Vit D/Calcium supplements. Has anyone here had a recommendation regarding this issue from their dermatologist? 

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ToddC's picture
Replies 4
Last reply 12/30/2016 - 4:52pm
Replies by: ToddC, jpg, Bubbles, Ed Williams

I know my story is totally anecdotal and I don't intend to try to convince people not to pursue medical options with this disease, certainly anyone reading this who has active Mel should seek the advice of qualified oncologists but I like to check in from time to time here since I got some fantastic ideas from this forum many years ago from a gentleman named James Sennel whom I thought was a total quack when I first read what he wrote here. Turns out he was on the right track however and I just want to continue the discussion for current readers.  

I never took Chemo (Inf) or Yervoy but my stage 4 melanoma vanished in 2011 and never came back. I was waiting for yervoy to get FDA approved back in 2011 but I never needed to take it because there was no longer any detectable tumors after my last sterotactic procedure in Nov 2011. I had a total of seven surgeries or radiation procedures to remove or kill melanoma tumors in my lymph system over the course of about 3 years from 2008-2011 and thought I would be dead from this cancer.  I was very lucky this never invaded any significant internal organs or my brain, it did grow in my gallbladder (removed) and about 1/2 inch from my heart (near my Aorta - fried by gamma radiation beam)

I think it was the following changes I made in lifestyle that cause a remission:  I purchased a Vitamin D/ UVB lamp from a company called Sperti and used it 3 times a week for about 10 min time, perhaps 30 minutes total each week. I ceased bathing my skin with soap other than the parts that really needed it, this increased sebum on the skin surface which really helped raise my vitamin D levels. My VD level was always low even though I took pretty large doses of vitamin D in pill form, upto 6000iu per day but it was when I started using this lamp the levels really raised up to mid 50s and sometimes 60+ while before that was always around 20 or so.  This is not a tanning lamp which is mostly UVB and is meant for very short duration use, not enough to seriously damage your skin cell dna, UVB does not penetrate skin as deeply as does UVA.

In addition to using this sort of UVB lamp, I ceased using fluoride toothpaste and began really scrubbing any produce I ate to remove any pesticide or fumigant residue which is also very high in Fl. Anyone that gets cancer should be aware of the degrading effect that this stuff has on mitochondrial enzyme production which is how vitamin D is modified to become active in the kidneys and liver. Also I would point out nearly all our steroidal hormones are the result of enzymatic processes so if these enzymes are not effectively working due to fluoride interference you will become low in some very important endocrine hormones.

I also ceased eating pretty much all processed dairy products such as cheese (I loved cheese before), skim milk, basically anything with high levels of casein protein. Casien protein is a sticky molecue which I think gums up your lymphatic flow and can prevent your immune cells from mounting an effective attack on tumors. This is because casein protein is highly imflammatory to the immune system resulting in reduced effectiveness of your T and NK cells whcih will usually wipe out cancer growths. Casein I would also point ouit is used in medical research to actually induce inflammatory responses for cellular research so you need to curtail most processed dairy products as you want your low level inflammation gone. 

I know people that get this disease are also super worried about sun exposure and sunscreens, I went thru the same thing.  I have not worn sunscreen at all in 5 years and havn't taken a vitanin D supplement in all this time yet my bloodwork shows I have super high vitamin D levels FWIW. Sunscreen is a very stupid product since it will generally prevent you from being able to produce any vitamin D since this is formed when UVB light wavelength catabolyses the cholesterol in your sebum and upper skin levels, that is this light frequency opens up the steroidal ring by removing a chemical bond in that hydrocarbon ring structure. That precursor is then reabsorbed into your skin since it is a lipid and makes its way to your liver for further modification by cellular enzymes. I used to grow all sorts of weird skin lesions and strange moles but that has ceased and my skin has actually improved a lot in 5 years. 

One other thing I feel is important is you must supplement your trace mineral intake including magnesium, zinc, iodine, boron, etc as all these substances are really important building blocks for all your hormones. Steroidal hormones are a controlling agent for genetic expression affectinve many bodily functions and feedback mechanisms. Get plenty of raw green leafy vegetables in your diet as well, they are high in Mg, vitamin A and C along with vitamin K, all of these are necessary in your fight.

The warnings about sunburn and UVB rays may have some merit but if you over-react by wearing sunscreen all the time and thus never receive enough mid-day sunlight which is highest in UVb contect you are asking for further cancer growth IMO. Apparently some people (like me) cannot absorb the pill form of vitamin D for some reason. Anyway, please just consider my message which I know seems implausible but yet here I am still alive and doing pretty well. My bloodwork today shows an LD reading below 20 which is awesome, it was well over 70 when I had active tumors. My wbc's are upto 25% levels from a low of less than 10%, my vitaminD is over 50 from around 20 previously, my blood sugar is much lower now, usually high 80's (early morn) and was always 110-115 range when I had active disease. (BTW - keep all of your bloodwork in a binder for later reference - the above markers are great for following progress in your fight)

IMO and based on my own experience with this thing, Mel is actually a reversible condition and not a death sentence. BTW-none of what I recommend will interfere with chemo or gene therapy medicines, higher vitamin D level will absolutely help all of these efforts for you to become health again. Good luck 

 

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PFritz's picture
Replies 3
Last reply 12/30/2016 - 4:47pm
Replies by: casagrayson, PFritz, Janner

I was diagnosed with stage 1b in May 2016 and only had the WLE completed, was told no to the sentinel nose biopsy. Mine melanoma was .55 Clark 3 and mitotic of 3 on left shoulder. Beginning of December I felt a lump on my right groin lymph node area. I went the next day to my primary care doctor who thought it was not a lymph node but possible a deep boil/cyst/zit. It seemed to go away after quite awhile however it's back (or maybe it never left just was not as noticeable). I saw my endocrinologist today for my diabetes and she did her residence in endo cancers at md Anderson. She said it's definitely a lymph node. It's not tender and it's hard.....very nervous and scared. I see my melanoma derm on 1/13 and going back to primary care this afternoon. With my staging I've just felt I'm waiting for the other shoe to drop and now feeling like it has. 

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Anonymous's picture
Replies 8
Last reply 12/30/2016 - 4:41pm
Replies by: Anonymous, ida_aud, Janner

Hello Everyone,

I have two questions in regards to this new journey.

First, I will talk about my diagnoses, I am 22 and was recently diagnosed with stage 1a melanoma with 

0.23mm in thickness

ulceration: absent

Regression: present

deep margin: negative

peripheral margins: positive (have already had the WLE procedure and got the all clear that got everything)

Mitotic Rate: 0

Microsatellitosis: Absent

Lymph-Vascular invasion: absent

Lymph nodes: N/A

The mole that was cut out was on my upper trunk above my scapula near my shoulder, I am almost certain this was caused by a nasty blistering sunburn I had as a child. I have known about the dangers of melanoma way before this diagnoses, and before this mole was biopsied, I have had 15-17 other moles biopsied before this, all have come back mildly atypical at the worse. With this being said, my question in regards to my recent diagnoses is how low of a risk is this mole? I know that my risk falls somewhere as the ten-year survival rate of stage 1a is 95% but just wanted to hear some others that can add to these findings. I am pretty scared but am ready to move past this and am glad that I found it early. Is there any advice anyone can give for this diagnoses and how to deal with it?

 

Second question:

I am also worried about now having another melanoma on me right now.. I wanted to see if anyone could give any advice on how common it is, if it is at all to have two primary melanomas on your body at the same time. I have read that my risk for a new primary is around 4-8% but wanted to see if anyone could point me to studies or from own experience on if they have had two primaries at once or if they occurred later in life. Thank you for reading this, and please let me know your thoughts. 

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Anonymous's picture
Anonymous
Replies 3
Last reply 12/30/2016 - 3:35pm
Replies by: triciad, Bradley75, MaPerny

Does anyone have experience with metastasis to spine vertebrae? What is treatment?

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Anonymous's picture
Anonymous
Replies 5
Last reply 12/30/2016 - 1:00pm
Replies by: cancersnewnormal, Ed Williams, Anonymous, Janner

In sept i got sick really bad with a cold. In early oct i was getting headaches and lightheadiness. I went to see a doctor who diagnosed me with viral sinusitis and said it would get better.

I had a pet/ct scan full body in nov that was all clear.

As of a few days ago i was having same symptoms. Went to dr and he gave me a mri of brain cause of cancer history. My brain came back clear (no tumors) and the mri stated thickening of mucous in sinus's. Ive had a ct scan in july and oct and both said sinus disease seen.

Could this be mucosal melanoma? Or is it just a sinus infection. Im going to see a ent soon. Sorry i have really bad anxiety ever since i was diagnosed. Ive had this since oct 5th 16.

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Anonymous's picture
Anonymous
Replies 6
Last reply 12/30/2016 - 11:51am

My elderly father was diagnosed with Stage IIb melanoma in October 2015 which was removed with a WLE.  In October of 2016 he was diagnosed with metastatic melanoma which had spread to his lungs, sub-qs and brain.  Doctors performed a craniotomy on one tumor and SRS on the remaining brain mets and started him on Keytruda (2 infusions to date).

Things were going well until about a two weeks ago when he fell due to weakness/numbness on his left side.  It has since been revealed that his brain mets have continued to grow, they are hemorrhagic and there are new ones.  The conclusion is that this treatment plan failed and now his only options are (1) whole brain radiation and a trial of ipi/nivo combo or (2) palliative care with just a few weeks to live.  My father has expressed that he wants to keep on fighting and I will support him, but his oncologist has strong reservations against WBR as there are many side effects/personality changes which impedes on quality of life.

Does anyone here have experience with WBR?  Could it extend his life by any amount of time? I think part of all of our shock is how quickly this has happened - from seemingly fine in September to now being told there is only weeks left - and that has left all of us wondering if there is anything more we can do.

Thanks.

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Everymoment's picture
Replies 8
Last reply 12/30/2016 - 11:39am

Hi,
Does anyone have a good recommendation for a melanoma treatment specialist? I was thinking of going to Duke or Chapel Hill. It looks like my disease has progressed.
Thank you.

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